Allison is a nutritional medicine student in Australia whose story illustrates many of our favorite themes – the importance of a healthy ancestral diet and good nourishment; the significance of infections in disease; the value of diagnostic profiling such as stool tests; and the potential value of antibiotics and fecal transplants as therapies for diseases not normally considered to be infectious. Most of all, she shows that in chronic disease, there is always ground for hope. Here’s Allison! – Paul
When you are convinced that it is raining inside of a bus, sensing the rain drops on your skin, you know that something is very wrong. That was my experience after collapsing at work in London in July 2008, where I had moved in 2007 for the working holiday that’s so much a part of the Australian experience for many young people. After working too hard in my job, I’d picked up a virus which started off as a sore throat and then suddenly escalated to much more. I tried going back to work after two weeks at home resting, but it was to no avail. I had no energy, had trouble standing upright and was so spacey, I felt like I was on another planet – or not on any planet at all.
I’m now writing this from the safety of the other side of what can only be described as a personal hell on Earth. Four years on from that virus, and about ten years after I first started to experience post-viral fatigue episodes, I have finally been given the gift of answers as to what has wreaked so much havoc on my life. I feel incredibly lucky after all this time that the universe has given me answers, when so many people I care about in the online health groups I frequent, don’t seem to be so fortunate. I’m not particularly religious, but getting answers is akin to a miracle.
I’ll backtrack a little to 1999 at age 22 when I had a bout of glandular fever (known as “mono” in the US). I’d watched my elder brother deal with chronic fatigue syndrome in the late 1980s and knew just how bad it could be. It took me about 6 weeks to recover, but I don’t think my health was ever really the same. As a young girl, I was very sporty and academic. But as I got older and I experienced these viruses (to this day I don’t know exactly what virus they were), I was not the same healthy person. I always felt much more tired than other people and was prone to depression, stress intolerance and self-loathing. In the early 2000s, I was able to work full time and had a pretty good social life but I had odd reactions to straightforward procedures like wisdom tooth removal, root canal and vaccinations. Those dental procedures left me feeling flu-like for weeks and the Hepatitis B vaccination needed for overseas travel left me with a large grey patch of raised skin on my inner thigh. In 2006, things started unravelling for me. After a bad relationship breakup, I picked up yet another virus and felt very dizzy and spaced out. I quickly developed severe muscle weakness and could hardly get out of bed. After about 6 weeks, I returned to work but experienced excruciating headaches and a sudden bout of claustrophobia on a train while commuting to work. In early 2007, I had a repeat of the very same thing for the same length of time. Mum would drive me to the beach for some sea air and I struggled to get my leg muscles to work so I could simply walk on the sand. When I returned to work, I resigned as it was quite a negative environment anyway – except for some of the lovely people I had the pleasure to work with. I was determined that my plans to move to London for a working holiday in mid-2007 would still hold. After “recovering” from that latest bout of post-viral fatigue, I found a contract job so I could save money for my big adventure. The only problem was that at that new job, I developed severe anxiety which left me paralysed at work and wanting to flee – almost all day, every day. My stress tolerance was non-existent. I didn’t seek help at all for the anxiety, I wish I had. Somehow, I managed to make it to the end of that contract and felt proud of myself for getting to the end of it and leaving the project in a pretty decent state for handover. With that, I took off for London.
In London, things were great for the most part but I still had anxiety at work, poor stress tolerance and was pushing myself too hard at work in a less than ideal physical environment – think cramped working conditions with not much fresh air and no air-conditioning. Welcome to modern London! I made it to December 2007 and planned a trip home to escape the London winter, but I developed a serious flu which finally subsided after several weeks but not without making me feel awful and scaring the life out of me. I did well when I was back home for three months and then returned to London again. I only lasted a couple of months before that sore throat I mentioned showed up and kicked off a whole lot of problems.
Literally overnight, I developed about thirty upsetting symptoms that were so bizarre I just couldn’t wrap my head around them. This was not the usual virus and post-viral fatigue episodes I had experienced. It was different. The worst symptoms were:
- Severe thyroid pain that alternated between stabbing sensations and a vague feeling of pressure
- Hot and cold body temperature fluctuations, so much so that on a 23C day in London, I could only relieve my body heat by taking a cold bath for half an hour
- Intense muscle aching around my shoulder and neck region that was only partially helped by holding a bottle of frozen drink to the area
- I needed to urinate every half hour and every hour overnight – that was quite unpleasant!
- Constant crying at the drop of a hat. I would call my parents back home in Australia every day and cry. I also saw a couple of health practitioners when I was there (some were doctors, some were “alternative” practitioners such as a naturopath) and I would just constantly cry. Obviously, I was really afraid of what was happening to me, but the crying was excessive
- I had disturbing thoughts, usually at night time, such as thinking I wanted to jump out of the window of my fifth floor apartment. I also had that very odd experience of rain inside the bus
- The apartment building also had no lifts, so getting back up to the apartment was a real test of my will, since my legs had stopped functioning
- I was very dizzy and mentally spaced out
- Alcohol tolerance was non-existent. During this period, it was my birthday and one of my dear new London friends took me out and I felt so drunk on just a few sips of cider.
The doctors that I consulted during this period were not all that helpful. One was very blunt and told me I had chronic fatigue syndrome and to come back in two months for assessment for a hospital in-patient program. A neurologist I had seen in Sydney in 2007 about my excruciating headaches concluded that since an MRI showed no abnormalities, that my problems were all psychological and I should get myself some Vitamin Z, medico slang for Prozac. He also prescribed Endep for the headaches which didn’t help. Of course, being a crying mess out of frustration and fear from all of these post-viral episodes will typically make a doctor assume the whole thing has a psychological basis.
After two months of no improvement, I had to make the difficult decision to come home to Australia as it represented the best chance I would have to recover, surrounded by supportive family, friends and an environment more conducive to healing. Sorry London, but sunshine and clean air are a necessity for me! I felt like a failure but I knew it was the best choice I could make. I naively assumed I would be back in London in no time at all.
On the flight back home, I couldn’t access the sea salt I’d put in my bag that had successfully resolved the excess urination problem, so that meant I was visiting the plane bathroom every half an hour for almost the entire trip. I wonder what the passengers next to me thought! I got back home to Australia and remember feeling very, very spacey, cold and out of it. I was very relieved to be back home though without the pressures of paying for rent and looking after myself. My Mum to this day has no idea how I made it home on my own and I don’t either. I guess I was just on auto-pilot, desperate to get back home to start healing.
I had pinned all of my problems on thyroid and adrenal issues – this turned out to be partly true, but these were more symptoms of an underlying problem than an actual cause itself. It took me a while to figure that out, which unfortunately was time I could have been treating the foundations with diet and targeted supplementation. I was unable to convince any endocrinologists I’d seen that I had a thyroid problem. All the testing I had (hormone levels plus antibodies) was “normal”, though an ultrasound showed decreased vascularity. They had no explanation for the thyroid pain I had, which incidentally disappeared once I started taking selenium in London. I was diagnosed by a holistic GP with hypothyroidism based on symptoms and started on T4-containing thyroid medication. Every attempt at any medication with T4 in it, synthetic or dessicated porcine thyroid, was a disaster leaving me even worse than off the medication. I’ve been on T3-only medication for a couple of years now and do quite well on it. I was also diagnosed in 2009 with a significant imbalance between levels of zinc and copper but I didn’t understand the implications of that, nor that I’d need to monitor it for life, so I took the supplements prescribed by a GP (general practitioner – the Australian equivalent of an MD) for only three months and gave up.
In late 2009, on Christmas Eve, I was driving back home after visiting a friend and I suddenly had an overwhelming sensation of intense fear wash over me and I thought to myself “I can’t remember how to drive, I have to stop the car and get out”. Time stood still and I desperately wanted to get out of the car and lie down on the median strip. I luckily made it back home but collapsed in a pool of adrenalin. That was the start of the most intense panic attacks you can imagine, something far worse than the anxiety I’d experienced before. I couldn’t drive because the panic was so intense and then the panic was occurring almost all the time – when I was a passenger in a car, on a train, on a bus, riding an escalator in a store, even going for walks in my beloved local park on the bay. I would get a sensation of primal fear and then think I wouldn’t be able to get home safely. Panic attacks were sometimes like a sudden powerful punch to the chest – at other times like a slowly rising tsunami. Home became my safe haven, but I even developed panic attacks at home. I would dread having to leave the house and cry because I hated that this had become my life. If it wasn’t bad enough having the physical symptoms I’d dealt with for years, the panic attacks almost did me in. I could feel agoraphobia approaching quickly and I knew without any doubt that I did not want this to be my life.
Skip to 2011 and things were so bad that I felt at breaking point. I couldn’t see a way out. I was having not just panic attacks but very intrusive thoughts of jumping in front of trains. I was despairing but not suicidal, so these thoughts scared me greatly and I felt I couldn’t trust myself. It made doing normal things that people take for granted almost impossible. I somehow managed to get by with family support, learning mindfulness techniques and breathing exercises. I tried neurofeedback for many sessions and sometimes felt an improvement only to regress again. I was trying to work during this period but it was just not manageable, my sleep quality was at an all time low and I would go to work in a daze, just waiting for the panic attacks to come which they did without fail every day. Having to commute home for an hour added to the problem – thinking about trying to catch the train home in peak hour was just torture. On one occasion, I had to run off a train as it was pulling in to a crowded station as I felt incredibly claustrophobic and fearful. I had somehow managed to complete a Masters Degree in 2010 but it was a struggle to sit in class with all of this going on. I would always sit near the door and didn’t contribute as much as I would have liked during class discussions. Often when I was a passenger in the car my Mum was driving, I would actually get out of the car at traffic lights while the car was stopped because I couldn’t handle being in the car stopped at lights as time stood still for an eternity – it was torture. Trying to rationalise just didn’t work – wherever this fear was coming from, it sure didn’t respond to rational self-talk.
A doctor that I started to see out of desperation in 2011 ordered a Bioscreen test to look at the gut levels of bacterial strains deemed by the researchers who established the lab to be significant in “mystery” ailments like chronic fatigue, behavioural and mental illnesses. Lo and behold, there were a lot of problems that came up on my results – extremely high levels of particular streptococcus strains and non-existent levels of many other bacterial strains considered essential. I had virtually no digestive symptoms at all though. My doctor didn’t really explain the significance of the streptococcus result as it pertains to mental health. I took a 12-day round of erythromycin, felt no different and left that by the wayside. Shortly after, I went to see another doctor that the neurofeedback practitioner worked with and the zinc:copper imbalance came up again and was confirmed as a likely contributor to many of my symptoms. I also had very low levels of B6 according to a Metametrix organic acids test. My dream recall was non-existent but returned with P5P and B6 supplementation, so I obviously really needed it. I also had an igG subclass deficiency which has now resolved with guided zinc supplementation. Working on the zinc:copper balance has made a big improvement to my health – my immune system is now much more resilient. I haven’t had a post-viral episode for about two years now. I also made the switch to a Paleo diet in early 2011 after getting frustrated with my lack of progress. That has given me a great foundation with which to repair my broken body.
But, I still had panic attacks and increasing agoraphobia which were preventing me from participating in life and making me despair. I was doing mindfulness and breath work, but they were really no match for it – they helped me cope but only just. Even the mirtazapine I had been taking, which at first was a godsend, had stopped being effective, so I knew I was in trouble. I stumbled on a blog from a fellow Australian called The Power of Poo when I was looking up some information for someone about histamine. In it, the author detailed the connection between streptococcus and mental health. That was a real lightbulb moment. I took this as a sign, so went back to the doctor who had prescribed the erythromycin and asked for two more rounds to see if it would make a difference. The side effects were awful – I felt like I’d been hit by a truck. But after a few weeks, the darkness enveloping me lifted and I felt so much more calm than I’d felt in a long time. I really couldn’t believe it.
Since then, I have re-tested the levels of gut bacteria and taken a few more rounds of erythromycin when I felt the panic attacks returning. I took that to be a sign that the streptococcus was still too high – that was confirmed with the re-testing which showed the streptococcus levels had reduced, but not nearly enough. I still have some episodes of anxiety, but they are nothing compared to the panic attacks I experienced. I am able to do things I had stopped doing – I’m now able to sit through an entire film in a cinema without leaving. I can leave the house without the thought of impending doom stopping me. I am slowly returning to driving but am taking things slow. I feel that the avoidance behaviours that took hold when the panic disorder was at its height need to be addressed somehow, so I try to do some informal exposure, though this isn’t easy when such strong memories are still there. But they are just that – memories.
In 2012, I came across information about a condition that is mostly documented in children and adolescents called PANDAS. The etiology of this condition involves strep throat triggering an immune and neurological response which leads to a range of symptoms including OCD, anxiety, autoimmune complications and excess urination. Bingo! When reading about it, I was convinced that this was what had happened to me. I spoke to one of my doctors about this and he has heard of adults being diagnosed with PANDAS, though there isn’t a lot of awareness of this condition – even less so when it applies to adults and even less so in Australia. My doctor tested my strep titres and one of them was high over range and the other was high in range. This, combined with my history and symptoms was enough confirmation for me. I am considering consulting with an immunologist who recognises PANDAS, though I don’t believe I need a formal diagnosis. I know this is what had tormented me.
I’m now looking at what my options are in the long term as I really do not want to be dependent on antibiotics to keep streptococcus levels under control and endless probiotics to re-populate the bacteria that have been decimated over the years. I’m investigating faecal transplant which has been incredibly successful in Clostridium difficile infections but is not widely recognised as a treatment for much else, especially conditions that are not obvious digestive problems.
Something that I don’t understand that bothers me greatly, is that the medical profession does not currently recognise the link between gut bacteria and mental health. There is acknowledgement that bacteria can cause illnesses such as bacterial pneumonia, endocarditis and rheumatic fever, but there is a gaping hole in the area of mental health and its connection to bacteria. Enlightened health professionals are well aware of this, but the average GP is not. How many people are needlessly suffering and only getting partial relief (if that) with medications? I know from my own experience that if I didn’t get the answer to my situation, I would either be dead, sectioned in hospital or completely agoraphobic and unable to leave my house. I am one of the lucky ones. Lucky that I had a supportive family, lucky that I could get information from the Internet (which often gets an unfair rap from medical professionals) and lucky that in my country, I can access and afford the testing and treatment I need.
I thank my lucky stars every day.
via this link:
I have been on the Perfect Health Diet for over a year now and have never left a comment but this post was very compelling. I suffered from severe panic attacks and very low stress tolerance my entire adult life. I had a severe case of mono in college, a lot of dental work since I was about 8 and a terrible case of Lyme disease in my early 20’s and was never the same since. Then, almost one year ago, my 6 year old daughter was diagnosed with PANDAS after a serious illness. Given my low stress tolerance, her symptoms (OCD, terrible thoughts about hurting, killing people…a six year old!) sent me into a tailspin of panic/anxiety. It had come to the point in my life that I had to keep my experiences extremely limited because everything upset me and caused panic attacks. They became severe enough twice in my life to warrant anti depressants that I was reluctant to take. So anyway, the Perfect Health diet helped me in many ways. I lost weight that I could never lose and improved my cognition and memory. I also felt more together and calmer than I ever had in my life but I still had panic attacks. I had certain triggers that couldn’t be erased. So when my daughter got PANDAS, I did a lot of research and read a lot of accounts of children being helped by homeopathy (I know….I hear the collective groans of disbelief)I was completely resistant and dismissive when I first read about homeopathy but the stories of cure and healing I read could not be ignored. We went to one homeopath who wasn’t skilled or helpful and then after more research stumbled upon the heilkunst method of homeopathy. Miraculously, there was a practitioner close to home. My daughter and I have been going to her once a month since September. Most of her issues have been completely resolved and I am completely panic free and my insomnia(which I had for over a year…could not sleep without drugs) is completely resolved. I have inner strength that I have never had and I sleep like a baby. It’s a little harder to gauge the progress in a 6 year old but her whole demeanor has changed. Her only sign of OCD is not wanting food to touch on her plate…otherwise a normal, happy 1st grader. I know many people are skeptical about homeopathy or know little about it but I am proof that it works and would be happy to discuss it further since I truly wish more people knew about it. I do credit the Perfect Health diet for allowing homeopathy to work as spectacularly as it has for me since I think my issues would remain chronic if I weren’t on an optimal diet.
Hi Jennifer,
Thank you, your story is very moving too. I’m so happy for you and your daughter.
I have never heard of Heilkunst homeopathy, will have to read up on it.
Thanks Paul-
It’s also known as sequential homeopathy. It’s a fascinating medical system developed in the early 1800’s in Germany.
I want to tell you that I am completely amazed at the physical and mental improvements I’ve experienced on the PHD. My entire body structure has changed to an effortlessly leaner type and I am never sick. My constant struggle with weight had become dispiriting and frustrating, affecting everything in my life. PHD changed that forever. Thank you.
Hi Jennifer , I am very ill myself diagnosed with cfs and for some time now with several issues , but depression and insomnia needing some urgent attention And with my gut problem connot tolerate antidepressants , Are you in USA or Australia , Iam in Australia and would like to look at the homepathics asap as I need sleep badly could you let me know please contacts in Aus
Hi Nev-I’m so sorry to hear of your troubles and I feel your pain. If you are not following the Perfect Health Diet, I would say that is the first thing you need to start doing. I am in the United States. You can contact the Hahnemann Center for Heilkunst & Homeopathy at http://www.homeopathy.com/clinic/154/contact-us. You can often use skype to contact a homeopath so don’t be discouraged if there are no practitioners in Australia. Good luck to you. Let me know if you need further assistance.
Hi Jennifer,
Another PANDAS story! The doctors that work in this field (and my own GP) think PANDAS is a lot more prevalent than currently realised. Of course, the general lack of diagnosis makes that a given, but just to think how widespread this could be amongst people suffering mental illness (kids and adults alike) is mind-boggling.
I’ve never heard of anyone using homeopathy for PANDAS – perhaps you could share your experience on PANDAS groups.
You’re right when you identify the criticism of homeopathy – it seems like a very easy target doesn’t it.
Good health to your and your daughter 🙂
Yeah that dilution thing, is really crazy.
But I have also seen it work, though not personally. I have taken it for Jaundice and other diseases successfully. My mother was cured of Ulcers and my wife of Rheumatoid Arthritis.
So even though logically it doesn’t make sense, but I can’t deny that it works. I also prefer it when I have some misgivings as to how the modern medicine will work, ie most of the time :-).
You still need to find a good practitioner.
Hi Allison –
Yes, once I started researching PANDAS, I read so many people’s stories and blogs about the disease…mostly affecting children and some incredibly severe. That was where I first heard about homeopathy and rejected it out of hand at first. But when conventional doctors want to prescribe lifelong therapy and/or antidepressants to your 6 year old, you decide you have nothing to lose and everything to gain, which is exactly true of homeopathy. There are no side effects (well, some fairly powerful healing reactions) It has been a miraculous experience for me and I credit the Perfect Health diet for allowing it to work so spectacularly for me and my daughter. If you’re curious….http://www.homeopathy.com/clinic/152/heilkunst-treatment
I believe you can do skype appointments so it’s very convenient….
Thanks for posting your story. Take care.
Hi Anand
I’m so glad to hear you know of people helped by homeopathy! It truly is an elegant, mysterious system of medicine. I really believe it works partly through the principal of nano particles. It does take a leap of faith to try it at first. It really works well for chronic illnesses against which conventional medicine has a limited repertoire in some cases.
Allison,
I just had the tests run that you recommended. Plasma zinc is 64, copper 100 and ceruplasmin 23.4. How do those numbers look? I have anxiety and panic attacks, I’m trying to figure out the cause. Thank you for any help you can provide.
Hi Alex,
it would be helpful if you add the unit type to your info (measurement units differ around the world).
& the lab ranges would be good to know as well, which can vary a bit between labs.
Darrin,
The copper is 100 ug/dl (range 72-166) the zinc is 64 (range is 56-134) and ceruplasmin is 23.4 (range 16-45). I’m located in the US.
So they look in range but the zinc should be higher than the copper?
Not my field of expertise, sorry.
But i will add this,
on the copper/zinc ratio, Allison posted a link to this article http://naturalinsight.hubpages.com/hub/Hypercupremia-High-Copper on the topic.
it says, “In a healthy body the ideal ratio of serum Copper:Zinc is between 0.7:1 and 1:1”.
So going by that, it would seem that your zinc is too low.
Jennifer, I am not sure if you will get this message, but I am praying you will. My daughter is very ill with PANDAS and I have read a little about Heilkunst Homeopathy. I would LOVE to ask you some questions. PLEASE will you be in touch with me at Jeanne.pacheco.monteiro@gmail.com
God bless you and I pray I can also say my daughter improves some day. I will await an email from you.
Congratulations to you for persevering in your quest toget to the root of your health issues. I know as well that gut bacteria imbalances play a much bigger role in many mental illnesses and am dismayed at the unwillingness of most traditional doctors to realize this correlation. I hope you are soon able to find a more permanent solution.
Thanks Renee, I also hope for a permanent solution! Just having answers is very powerful for me, so I’m thankful that I could at least get antibiotics to assist me, but it also brings up its own issues of potentially making the dysbiosis worse and it’s ironic that perhaps it could have been use of antibiotics in my past (though I never used them excessively) that contributed to the streptococcus being able to take over so dramatically.
great post, i have often wondered if my weird symptoms over the years were some story similar to this. in my case however, going down this “western medicine” road of testing for individual “diseases” did 2 things for me: 1- took all my money, 2- never explained some of thye more holistic, entheogenic altered states i experienced throughout my life.
so what do i do now, instead? i consult with chinese medicine doctors and i practice shamanism and try to approach nutrition and behavior from a shamanic perspective. it just feels better, and that’s all i really care about. even if i do have some bizarre viral strain in my gut causing my immune system to go haywire from time to time, i’d rather look at that aspect of myself as part of nature that i asked to teach me something.
thanks for sharing and surviving.
Thanks for sharing Darius. The road to recovery is a really personal one and I’m glad you have found something that sits right with you. That is so important to find something that resonates with you rather than following what everyone else is doing.
I agree with you that there is some sort of learning to be had for anyone with chronic illness. It’s very difficult to get to that point of acceptance though, where self-reflection is allowed to flourish and we accept whatever lesson it is that we were meant to be given. I’m glad you’re at that stage.
I should correct you though – streptococcus is far from bizarre! If that’s what you were referring to 🙂
Wow, I can relate to just about everything that Allison said here. I’m currently plagued with chronic fatigue and panic attacks which are very constricting to enjoying life. I would love more info on what I could do for proper testing to see if this could be my issue.
Hi Tyler,
It is believed that chronic fatigue and anxiety or panic are very commonly experienced together and I don’t believe it’s simply because anxiety has come about because of the chronic fatigue. I believe they share common causes. Depression is also commonly seen in people with chronic fatigue – in that instance I feel that some of the depression comes about because of the experience of chronic fatigue but it also has a biochemical origin too that is also contributing to the fatigue.
Whereabouts are you based? I can point you to some good diagnostic testing and practitioners if you like, based on my experience of what sort of areas I think would be useful to investigate.
Thanks for the info, I appreciate it! I’m currently based in northern MN and there’s not much around me as far as lab testing facilities (direct labs). I’m looking to possibly be headed to the Chicago area soon so I will definitely have more options. It’s just going to be one hell of an adventure trying to get there with all these symptoms in the way. I’m noticing that b6 and zinc deficiencies might very well be an issue too. Pyroluria has been on my mind.
Hi Tyler,
I suggest joining the Pyroluria Facebook group: https://www.facebook.com/groups/pyroluria/
A friend of mine is on there and she’s from MN so she may be able to direct you to a practitioner.
Nearer to Chicago, Mensah Medical are considered leaders in pyroluria treatment: http://www.mensahmedical.com/Main-Clinic-Outreach-Clinics.html
Something to note is that I don’t think Dr. Mensah treats gut dysbiosis so you probably need to find another practitioner to help out there – frustrating I know. I work with two GPs (Aus. equivalent of an MD) and one ND because they all have their strengths and weaknesses. They’re all across my treatments though.
I think Dr. Mensah also treats methylation problems – this also has its own impact on mental health -though they take the more simplistic approach of just asking if someone is an under or overmethylator rather than looking at the genetic mutations that may be affecting the methylation cycle. That is something Dr. Amy Yasko does, though her protocol is much more involved.
As for testing, I strongly suggest getting an organic acids test from Metametrix. It clued me up to the B6 deficiency and also to an MTHFR C677T homozygous mutation (very important). Also, the pyroluria testing (along with plasma zinc, serum copper and ceruloplasmin).
As for testing gut bacteria, I would suggest Metametrix GI Effects but it does not test for Streptococcus which is a major failing in my opinion – otherwise that test is fantastic. I think Doctor’s Data may test for streptococcus though I’m not entirely sure. The Bioscreen test I had done is via their lab in Melbourne, AUS and I’m not sure they can accept samples from overseas due to viability concerns.
Disclaimer: I’m not a qualified practitioner and Paul’s site is not about giving medical advice. Definitely seek out a qualified medical practitioner and perhaps ask them about the suggestions I’ve given.
Tyler,
I ran the following test for myself, two kids and wife. A Dr’s endorsement is not needed to order, run the test and receive the results:
http://www.riordanclinic.org/mm5/merchant.mvc?Screen=PROD&Store_Code=BCL&Product_Code=LPyr.
It’s very easy to do, and according to some research I’ve done, is considered the “gold standard” for pyroluria testing.
Turns out that I was the only one with a high result (the rest of my family were in the “borderline” range). This result was not unexpected for me as I suffer from depression as well as anxiety, two traits strongly associated with my test results. I was surprised to learn that pyroluria has also been associated with metabolic disorders such as Type II Diabetes, which I’ve been diagnosed with as well.
I also live in MN, am excited to pursue treatment, and will try to remember to post back the name of a good Dr. if I find one (and I get their permission to do so).
As to pyroluria, the condition itself is confusing to me as I don’t understand how it could have come about as a genetic trait, yet all of the info I’ve read about it considers it an inherited condition. I lean more toward some form of gut dysbiosis and/or metabolic problem that disallows the proper absorption and/or metabolism of Zinc and B6. That said, if the problems associated with it can be treated by simply taking Zinc, B6 and maybe a few other nutrients in supplemental form, I’ll be more than happy to go that route until I find the true underlying cause.
I’d like to note that all of the articles I’ve read warn against trying to treat yourself with supplemental Zinc and B6 as both can be toxic in high doses over an extended period of time. Even though the treatment is done w/ common nutrients, the dosages typically need to be high so therefore treatment needs to be monitored by a qualified practitioner.
I hope you find your answers and I hope I found mine as well.
God Bless.
Also….a lot of symptoms that are typical CFS symptoms like noise and light sensitivity disappeared with the streptococcus treatment in my case – that is a big indicator that gut health plays a very big role in the CFS picture. I think copper:zinc treatment helped me in this regard too. It’s nice not to have to wear sunglasses all the time and to tolerate fluoro lighting (even though I hate it!)
Thanks for sharing such a powerful story Paul! 🙂
Allison, keep on the path! It sounds like you’re moving yourself in the right direction and you’re definitely an open minded soul which helps things no-end.
I’m an Aussie as well. Have you found anywhere in Australia where you’re able to have Fecal Transplants done for your specific case? From what I’ve read the F.T centers only accept people with specific digestive problems such as Chrohns, IBS, etc.
I can’t imagine what getting up every 30-60mins during the night to pee would’ve been like. I’ve found myself recently having to get up once (sometimes twice – rarely though) every night and it really annoys me! I’m not sure why this happens.
Thanks for the inspiring story, both Allison and Paul.
Best in health to you both,
Kristopher
There is one person well known in the area and possibly others. They did a Catalyst story on him as we’ll so google him. In Sydney so not sure where you are from.
Prof Thomas Borody
Centre for Digestive Diseases
Five Dock, NSW
Hi Kristopher,
Thanks for the encouragement 😛
Yes the CDD are the experts in faecal transplants (Borody is considered a world leader). I suspect I may not qualify as I don’t have a digestive disease, even though I have evidence of dysbiosis and that strep was a major factor in the panic disorder. I am planning to make an appointment in the next month or so to see what they say.
Re excess urination, could be low sodium. The importance of sodium in the diet can’t be overestimated and my opinion is that a lot of people on Paleo diets (and low carb diets) could be too low on sodium – once processed food is removed, salt must be added to food. But even then, in some cases, even more salt is needed (in my case my aldosterone is quite low so I can’t retain it). I’m used to getting up once or twice at night, it doesn’t bother me too much – it’s the once an hour that gets to me! If I don’t have salt water at bedtime, that is more likely to happen.
Good luck 🙂
Allison is a nutritional medicine student in Australian
I didn’t realize Australian was nutritional medical specialty 😉 Do they teach you how to put another shrimp on the barbie?
She only studies in Australian. Fortunately she communicates in English also.
I’ll fix that now 🙂
sometimes!! 🙂
hi allison
please help me find someone in melbourne australia who knows about this and mthfr – please reply
Hi Joanne,
A naturopath called Fiona Chin is pretty good with the methylation cycle treatments (including MTHFR). As for the Bioscreen and gut bacteria, she can order this test too, though you may need to get a GP on board for some part of treatment.Fiona also knows about pyroluria and zinc:copper imbalances if you want to check that aspect.
Melbourne seems to be a bit lacking in practitioners. I’ll see if I can get a GP recommendation for you and will post another comment.
take care,
Allison
we call them prawns here btw 😆
In my head it’s a shrimp on a barbie, stop messing with my cherished cliches of Australia! Next you’ll be telling me Mad Max wasn’t a documentary.
that’s probably thanks to the Paul Hogan ad back in 1984.
http://www.youtube.com/watch?v=Xn_CPrCS8gs
Where he actually says
“i’ll slip an extra shrimp on the barbie for yer”
i’m guessing as the ad was geared for the overseas market they used the word shrimp…tho other markets also use the word prawn.
there’s hours of fun to be had looking in to the whole shrimp vs prawn thing
…cos on the one hand they are different species,
but also the same species can be called by either name, depending on where you live…
or something like that…ice cream headache.
http://en.wikipedia.org/wiki/Shrimp
http://en.wikipedia.org/wiki/Prawn
Hi Allison,
Since your streptococcus seems very resilient, have you looked into Anti-Biofilm treatments?
Hi there
Yes I’m on a 3 month biofilm treatment now but I only started when I was on the 6th (and last) erythromycin round. The strep actually responded really well to erythromycin on its own, I didn’t need a biofilm protocol. The strep level was so high that 6 rounds of erythromycin were needed, however I do worry about my bacterial population now. I’m doing the biofilm protocol because I have some other microbial issues to address and it made sense to get the job done properly before I further investigate future treatments.
Hi Allison,
You say that you can trace all of your health issues back to an initial bout of mono, so have you investigated viral infections as a possible cause/contributor? Mono aka Epstein-Barr aka HHV-4 in particular? Your story, from ALL of the symptoms that you describe: fatigue, depression, excessive urination at night, panic attacks, constant crying, disturbing thoughts, dizziness, mentally spaced out, hot and cold fluctuations, hypothyroidism to your health history: mono and multiple strep infections as a child among other viral infections, everything you describe sounds like you could be my wife Tiffany in another life!
A couple years ago Tiffany decided to stop taking birth control and her health took a turn for the worse as those hormones were apparently helping to keep her “functioning” all the previous years and she suddenly developed amenorrhea and hypothyroidism. Finding an endocrinologist who would actually agree that she was hypothyroid was impossible but we kept trying until she eventually progressed to be so bad that she was officially diagnosed but after trying many different thyroid medications, none ever helped her “feel” better and no one could find the cause of her thyroid issues. We finally came across an ad in the paper for a chiropractor who said he specialized in thyroid disorders and chronic fatigue syndrome so we went to see him and he ordered hundreds of blood tests looking for infections. In the end he diagnosed her with a chronic viral infection of Epstein-Barr Virus (mono) among a couple others and he told us that he has seen this in multiple patients and Epstein-Barr is always related to chronic fatigue and thyroid issues. Chiropractors cannot prescribe medicine in the state of Florida so he transferred her to a semi-retired infectious disease specialist who he had worked with for previous patients, Dr David Reifsnyder in Lakeland, FL. Dr Reifsnyder agreed that Epstein-Barr is the main cause of her hypothyroidism and chronic fatigue and told us how he has treated hundreds of patients for this throughout his career and that they always have active Epstein-Barr infections but that most doctors don’t know how to test and diagnose an active chronic Epstein-Barr infection, even before he could test for the virus he said that he discovered patients with these symptoms would respond to antiviral treatment, and that Tiffany would have to take antivirals daily for the next 2-4 years but that he was sure this would eventually clear up all of her issues, however recovery would be a slow process as her HPA axis recovered and got “back into sync”.
We noticed her improving almost immediately after starting the daily antivirals and it’s now almost 1 year later and she’s stopped taking antidepressants and just seems to have no desire to visit psychiatrists any more, something she had been doing for all of her adult life, I think they had tried putting her on every antidepressant possible over the years. She has also stopped taking thyroid medications and her body has normalized her thyroid levels on its own. She doesn’t have fatigue issues any more, she wakes up feeling more refreshed in the mornings and doesn’t want to sleep all day any more, she’s even started wanting to exercise and go jogging, something she enjoyed as a kid on the school track team but had given up as she got older and dealt with these issues. And after 1.5 years with a complete absense of her menstrual cycle her female sex hormones have normalized on their own and her regular menstrual cycle returned.
It seems that Tiffany is on her way to being “cured”, however we may have to investigate PANDAS more because I’ve never heard of it but from reading the link and from what we know of her health as a child it really seems very possible that Tiffany could have been diagnosed with it. She has not had her gut bacteria tested, however we’ve been following the PHD for the past couple of years and we make our own homemade sauerkraut, kimchi, and kombucha which I hope is keeping both of our gut bacteria healthy. I have not had such extreme health issues myself however I have noticed positive changes in my health since beginning to eat fermented foods daily, including mental health changes. It kills me that the medical community in general doesn’t recognize this connection and instead tries to cover up the problem with dangerous medications like antidepressants and amphetamines instead of investigating the actual root cause of the sickness. I have friends I’ve tried to explain this to but they just dismiss me and keep popping their pills. I guess as long as there are sick patients who believe that there’s a pill for everything there will be doctors who will cater to them.
Hi hunter,
I have had the exact same thing happen to me. I came off birth control after being on for 10+ years and now am slightly hypothyroid and have irregular menses. Would you be able to tell me what EBV test they ordered actually for your wife if it was a specific one different then the standard? Thanks!
Hi Hunter,
Thanks for sharing.
I do suspect that the re-occurring viruses were probably Epstein Barr. In 2008 when I returned home I saw a Professor of Immunology that specialises in CFS (supposedly). He diagnosed me within 10 minutes with “post-viral fatigue” but also felt that anxiety was a big factor in my problems. Now I think about it, I agree that low stress tolerance and a high stress lifestyle contributed, but the way he presented it was as though I was just a neurotic patient so I didn’t return to see him. I’ve made a lot of progress without the help of specialists. There are a couple of progressive immunologists in my state, so it may be something I look in to, though I’ve been burned by specialists in the past and I’m not sure I have the funds to put towards that anyway.
Fatigue and low sleep quality are the two main remaining things I am dealing with – everything else I have an answer for. But having said that, my gut bacteria are still a mess and I have read that these influence both sleep quality and fatigue so if I can resolve the dysbiosis once and for all, I wouldn’t be surprised if those last main problems resolve.
Reading your wife’s story is inspiring. It could be that I still have Epstein Barr in my system, I wouldn’t doubt it at all. I just need to find an open minded immunologist to help!
Good luck resolving the last of your health issues, Allison. I was hoping you had already had EBV tested so I could compare. And I checked old blood tests but Tiffany never had been tested for streptococcus. I remember the Dr who ordered and analyzed all of her extensive testing was sure that the cause of her symptoms was going to be viral, however he also checked for a few specific tumors thru MRI’s and urine testing. BTW, he also recommended a monolaurin supplement called Lauricidin and it’s supposed to be very good for killing strep too, we don’t buy the supplement though, we just eat lots of coconut milk and oil which has lauric acid that converts to monolaurin.
Hi Hunter,
Apologies for my slow response.
I don’t have any of the old test results from that period.
I’m taking monolaurin at the moment as part of biofilm protocol. Fingers crossed.
Wishing Tiffany healing 🙂
Have any of you considered the possibility of mercury toxicity as well? Panic, extreme fears, social phobias, the feeling of doom, etc., are KEY symptoms of mercury toxicity, and may not completely resolve until mercury is chelated from the body.
I’d highly recommend googling “Andrew Hall Cutler” and/or his book “Amalgam Illness” for more info. (Mercury can come of course from many other sources, vaccinations being one of them.
My story is quite similar to Allison’s.
I can see now that throughout my life I had always had an intolerance to dairy (although I just thought I ate too much)I would suffer from cramping, bloating and reflux for as long as I can remember.
In April 2011 I went overseas through Europe with my boyfriend. I had the time of my life but I felt I was always quite tired over there and zapped of energy (I just put it down to too much drinking)
Then I came back to Australia and I started to get intense burning in my chest, throwing up after I ate as I couldn’t keep my food down and severe bloating and diarrhea which would last for hours.
I ended up convincing my doctor to give me a Gastroscopy which picked up I was lactose intolerant.
Then in December 2011 my symptoms returned only more severe.
I found that if I ate I couldn’t drink anything for about a good 5hours otherwise I would be in intense pain from under my ribs all the way down my stomach.
It didn’t matter what I ate or when I ate it I was just in constant pain.
Then in March 2012 I lost my grandmother suddenly and exactly a month later my body packed it in.
In the space of 2months I had lost 12kg’s from my tiny frame and you could see my ribs protruding (meanwhile I was eating constantly but never feeling full – especially sugar!)
I had chronic fatigue and I was bedridden for months, I was constantly cold and no matter how many clothes or blankets I put on myself I couldn’t warm my body up.
I would have constant panic attacks that would confine me to the house and my mind would just race with bad thoughts and I wouldn’t be able to turn it off.
But the icing on the cake was when I lost my short term memory, you could tell me over and over and I couldn’t remember anything.
Finally after 4months of going from doctor to doctor I finally found one who was willing to help me and didn’t want to put me on antidepressants cause they thought I was crazy!
She sent me through for another gastroscopy but also a colonoscopy as well and ended up finding I had Helicobactor which is a bacteria that hids in the lining of your stomach.
After a triple antibiotic therapy I’m happy to say that the bacteria is gone, but I am now working with an amazing naturopath who is helping me with repairing my gut and supplementing with vital minerals that my body so desperately needs.
While recognition of the link between gut flora and mental health is still not in the “radar” of mainstream practitioners, the research in this field is increasing. I highlighted this connection in two blog posts I wrote in October. One dealing with depression and the other with anxiety.
You can access them here http://syontix.com/why-do-i-feel-so-blue-the-role-of-endotoxemia-and-leaky-gut-in-the-cause-of-major-depression/ and here http://syontix.com/anxiety-disorders-its-not-just-all-in-your-head
Hi Ray,
Thanks for posting – I always love to get my hands on more articles and information about this area. It looks like you’ve gone above and beyond to research it, so I look forward to reading it.
I also was trying to remember your website to pass on to someone with SIBO, so it’s good you posted here! I’ve read some of your comments over on Chris Kresser’s site.
cheerio
Allison
Wow! I love, love this story. Allison, I’m so happy for you that you’ve finally regained your health! And while weight loss stories are amazing and awesome, I’m just fascinated by stories about mental health and gut bacteria, and how it’s all interconnected. I’m currently at war with my own gut bacteria because I know they’re messing me up, I just don’t know how. More and more I’m convinced that addressing the role gut bacteria plays in literally EVERY area of health is crucial to the future of medicine and public health.
With my own history, coupled with the need that exists for a better understanding of the gut biome, I would love my career to be heavily focused on gut health, specifically relating to gut bacteria. The problem is, I don’t even know how I would learn about this stuff! Even the best research is still in the very beginning stages, as far as I know, and it seems like most of the treatments for bacterial imbalance issues are trial-and-error. I so wish there was a degree program in gut microbiology, but I haven’t come across one yet!
It’s just so frustrating that psychiatrists and psychologists ignore diet and gut health when looking at mental health. I used to have anxiety issues (not NEARLY as bad as yours, Allison), and they got so much better when I changed my diet.
Congratulations again, Allison, and good luck improving your health even further!
Thanks Alyssa for the kind words.
I’m also fascinated by the importance of gut bacteria (and all microbes really).
Have you been able to access any testing to see what your levels of different bacteria are? It’s really useful.
I agree with you that it’s hard to know where to start but there are some good Microbiology textbooks out there to give you some foundational knowledge and then you could top that up with reputable information published on the Internet. Chris Kresser posts a lot about bacteria and his upcoming book is all about gut health. Also Ray’s site posted above is a great resource. Are you studying in the medical or nutrition field?
I’m totally in agreement with your comment about psychiatrists and psychologists. There is absolutely an important place for what they do, but unless the biochemistry is addressed, all the talk therapy and drugs in the world won’t make much of a dent really. I do feel that it’s people like you and me, the Jaminets, Chris Kresser, enlightened medical practitioners and researchers that are the ones that will bring in a new way of treating these illnesses. It probably won’t come from the top down in the medical establishment.
A few years ago I had a stool microbiology profile done by Doctor’s Data, and they found no growth of bifidobacterium, lactobacillus, or enterococcus, all of which you’re supposed to have. I had normal levels of bacteroides fragilis and e. coli, which are also supposed to be there. It showed ‘beta strep, group B’ and ‘alpha hemolytic strep’ as being imbalanced, but it showed nothing under the ‘dysbiotic flora’ category. It also didn’t find any yeast.
At the time, I was taking tons of acidophilus, so I was disappointed that there was no growth. I had active ulcerative colitis at the time, though, so I’m sure that messed everything up. And now, I doubt these results are very relevant to my current digestive problems since I lost my colon a year ago. I’m not even sure what bacteria I’m SUPPOSED to have in my small intestine! Agh. I ordered a kit from American Gut though, so I’ll get some info from that. If you haven’t seen the American Gut project, you should check it out!! I think they’re going to turn out some fascinating research.
I love Chris Kresser, and I’m so excited to read his book about gut health!! Microbiology is a good idea…I’ll have to look into some classes. I just checked out Ray’s site briefly, and will definitely be looking through everything he has! Right now I’m studying Public Policy because I’m considering working in health/nutrition/food policy to make our messed up healthcare system and food industry work a little better, but I’m also completing the pre-reqs for a Public Health/Nutrition graduate program that would give me RD certification. I keep going back and forth as to whether I want to work on the whole system via policy, or on the individual via clinical practice. Maybe I can do both! But I think you might be right that top-down change is unlikely. I tend to be a little idealistic, and I wish I could just make major changes and help thousands of Americans by going into public policy, but I’m not sure that’s very realistic ):
Hi Alyssa,
I don’t see why you can’t do both policy and clinical work, though I think you would do more good via clinical work considering how bureaucracy often gets in the way of progress. My personal view is that change is coming from the bottom up, so to speak, from the patients themselves and enlightened practitioners and health writers.
I’m looking forward to Chris Kresser’s book too. It’s much needed.
Good luck!
Hi Allison,
Thank you for sharing your story. I really appreciate that people like you and the Jaminets emphasize the importance of good diet and checking for chronic infections! I didn’t consider the chronic infection part until I came across their website. I’ve been pretty interested in gut flora effect on health ever since. Also, interesting that you bring up PANDAS. The other day I read about a medical mystery in LeRoy, NY about 12 girls who developed tics in 2011. There was a segment about it on the Today Show:
http://www.youtube.com/watch?v=T9RPs_ysYgE
I have a few questions. You mention testing for Streptococcus. Is Streptococcus tested through blood, urine, or stool? What kind of symptoms would warrant a streptococcus testing?
You recommend getting an organic acids test from Metametrix. Three tests came up when I searched for this under http://www.directlabs.com Which test are you referring to?
Organix Basic Profile $281
Organix Complete Profile $403
Organix Dysbiosis Marker $281
Also, I recently received results to my Metametrix Microbial Ecology Stool test. I am negative for both Pathogenic Bacteria and Yeast/Fungi. But I am positive for “Parasite present taxonomy unavailable”. Do you know how to interpret this result (does this mean I am dealing with a protozoa and not a helminth, or neither)? What should my game-plan be (try to identify the specific parasite through a stool test from a parasitology lab like Parawellness Research)?
I read that “Metametrix can report false positives since DNA/PCR will identify even dead parasite DNA that you ate as well as live.” Is this true? Does this mean a PPTU result can either mean: (a) Protozoa (b) rare unknown Parasite (c) dead parasite eaten from food?
Hi Monnyica,
Streptococcus antibodies or titres are tested in blood. Here is an explanation of what it means: http://www.enotes.com/streptococcal-antibody-tests-reference/streptococcal-antibody-tests-172435 I had ASO and Dnase tested. I am certain that if these were tested in 2008 they would have been even higher, but in my case they were definitely indicative of a problem.
Stool testing will indicate if there is an overgrowth of strep in the gut. I don’t know what the best testing in the US is for strep testing in stool – I used Bioscreen in Australia which tests for streptococcus parasanguinis and salivarius.
Testing would be indicated if there is a history of strep throat and ongoing health issues that have no other explanation. Also if there is any evidence of dysbiosis – the presentation of which can be really quite broad. Personally, I think anyone with ongoing chronic illness (especially ones without simple explanations and resolutions) should get checked for dysbiosis.
I haven’t heard about dead parasites showing up on the Metametrix test. I suggest contacting them directly about your question as I don’t know. I have asked someone about the “taxonomy unknown” (as they posted about it on a health group recently) and will see what they come back with. I had this result myself for yeast/fungi and I suspect mold in my case.
The exact test I had done was Organix Comprehensive: http://www.metametrix.com/test-menu/profiles/organic-acids/organix-comprehensive (sounds like what you’ve listed as “Complete” but just double check on that).
Hi Allison,
Your story made me think of my own experience as a very young kid. First, markers of inflammation in my blood which the doctors did not know what to attribute to. Then, the development of tics and fobias of fainting – by age 8 I already knew where to sit at school or church to avoid panic attacks. I actually fainted several times and knew very well it was my mind/fobias causing it. My life has been marked by fears – they literally dictated most of my choices. Finally, a diagnosis of autoimmunity that triggered an 8-year long search for remedies. I started addressing gut infections – gut imbalances and H.Pylori – then herpes viruses, then mono then, under Paul’s suggestion, I requested a course of fluconazole for a fungal skin condition that might actually be systemic. I saw improvements only when I addressed these infections together with a PHD compliant diet. The tics are still with me and are cyclical – which makes me think of some parassite I have not identified yet. But many other symptoms disappeared and for the first time I have a different perspective in life. In addition to infections I had several nutrient deficiencies – I was prone to break bones and hurt myself continuously, partly because of an anxious behavior and partly because of low vitamin D. I know very well what you mean about overcoming the memories and the habit of living life to cater fears. Plus, I spent so much time finding a psychological cause, torturing myself with any possible technique to train my mind…I wish I had known. What do you think we can all do to get better diagnoses and prevent more suffering in the future?
Jo
Hi Jo,
It sounds like you have made a good amount of progress- that’s wonderful 🙂
I so relate to what you mean about torturing yourself on the path to getting better. The self blame is the worst part. Mental illness is not a character flaw, it is usually of biochemical origin, but not many doctors are trained to investigate what the causes may be and then treat accordingly. And meanwhile the rates of mental illness are skyrocketing around the world.
As for getting better diagnoses, that’s a tough one because it is very difficult to get official validation without a switched on, open-minded doctor. I estimate roughly only 10% of medical practitioners truly fit this description, so in the end it comes down to the patient themselves and their support network to research for themselves and try to seek out one of these good doctors. Easier said than done, most of us have spent years and a lot of money trying to track down a good doctor!
Have you ever had your copper and zinc tested? I genuinely believe the balance of these two plays a key role in mental health issues. The doctors who are trained in this usually order plasma zinc and serum copper and look at the ratio.
Hey Allison.
Thanks so much for sharing your story.
It is so incredibly interesting. I suffer chronic fatigue syndrome and my younger sister has recently been diagnosed too but we are so very different in terms of symptoms, triggers etc.
I can definately relate to some of your experiences but I am more speaking here on behalf of my sister who has severe anxiety and ocd and has since a very young age. She has physiological symptoms as well (chronic fatigue, poor stamina, brain fog etc) but her mental state is likely the most debilitating of all. It is horrible to watch.
I am trying to heal myself and currently looking at what pathogen/immune dysfunction etc after years of healing is potentially holding me back but also worry about her and try to use my knowledge but it gets too exhausting.
I think getting this bioscreen test would be ideal. She has been consulting with Chris Kresser (we both have) and did the metametrix organix basic test. He didnt comment on her b6.
Your post has some great suggestions. It gives me hope for my sister.
Thanks, Amy
Hi Amy
Apologies it’s taken me some time to get back to this page.
Yes, it does seem that everyone has different experiences with CFS. It’s very unique. Some of the symptoms that could be attributed to CFS in my case, such as severe noise and light sensitivity have both disappeared with the treatment for streptococcus and working on zinc:copper balance. I really feel that there are explanations for the symptoms of CFS but those explanations are going to be different for everyone. Eventually, I don’t think CFS will be such a mystery, I only hope that day comes around sooner rather than later because I see how much suffering it causes.
I absolutely know what you mean about trying to help others when you are not well yourself. I’ve been trying to help my Mum, Dad and brother for a while and it does get draining. Your sister is so very lucky to have you 😀
So did your sister’s Metametrix results indicate a B6 issue? I think this is actually really important to address. I had no dream recall until I started on B6 and it’s important for many functions including neurotransmitter production and conversion.
The Bioscreen test is only available to Australians – where are you located?
This story makes my experience look like a walk in the park:
http://www.guardian.co.uk/books/2013/jan/13/susannah-cahalan-brain-fire-interview?INTCMP=ILCNETTXT3487
To the Australian readers…with regards to pyroluria,
Do Australian doctors (GP’s) recognise this condition/disorder, or are even aware of it.
& do you know if any testing is covered by Medicare.
Or will i have to organise my own testing.
I am in Sydney by the way.
Thank You
Hi Darrin,
Here’s a list of practitioners that treat pyroluria:
http://www.biobalance.org.au/patients/find-practitioners
I see the doctor in Marrickville, he bulk bills appointments but cannot bulk bill the pathology tests – the pyroluria testing is never covered by Medicare (it’s about $80 – well worth it) and plasma zinc, serum copper, ceruloplasmin are sometimes covered by Medicare depending on the GP’s discretion as they come under heavy scrutiny by Medicare, so often they do not bulk bill these as they will get a warning for “over servicing”. Since that doctor does not charge for consults, I happily pay the pathology fees so he doesn’t come under scrutiny with Medicare.
There’s also a helpful Facebook group you may want to join: https://www.facebook.com/groups/pyroluria/
Take care,
Allison
The zinc, copper and ceruloplasmin comes to about $80 as well. If you have another GP that can test these and bulk bill them you could try that as long as you get the exact ones above I mentioned (plasma or serum as above).
Thanks Allison, very helpful
Hi Allison,
I plan on seeking help from a naturopathic doctor. But I was wondering if you can help answer a few questions. I received results to my Metametrix Organix Comprehensive test. I tested high for p-Hydroxybenzoate which indicates “intestinal bacterial overgrowth”.
Do you know if “intestinal bacterial overgrowth” from a urine test indicates SIBO? Or can it be in the large intestines? (I experience warm acidic feeling in stomach and tongue plaque)
Is 1.8 for p-Hydroxybenzoate borderline between normal and high? How would you interpret a value of 1.8? Is this considered minor bacterial overgrowth?
Link to Test Result
http://postimage.org/image/6adywyfit/full
Hi Monnyica,
Apologies for the slow response.
I just had a look at your results and with that very high sulfur result, I would strongly suspect a genetic mutation of CBS C699T which you can read more about here: http://metabolichealing.com/michael-s-blog/metabolic-gateways-cbs-gene-mutations-and-glutathione/
SUOX is another gene that may cause a problem with sulfur metabolism.
I also had high kynurenate – turns out the pyroluria was the reason my B6 was so low. Treating that restored dream recall. B6 is essential for neurotransmitter formation and conversion. Because I’m heterozygous for CBS C699T, I don’t take regular B6 but take P5P (the active form).
As for the bacteria, I can’t really answer that question but there is an intepretive guide for this test on the Metametrix site which may help answer that.
Did you manage to see an ND?
Also, curious about the D-Lactate being undetectable.
Hi Allison,
Thanks for your reply and for bringing up Pyroluria! This is my first time hearing about it. I identify with some of the symptoms like anxiety and rarely remembering dreams. I’m wondering if some of my bloodwork may indirectly offer some clues? My Hemoglobin is low but my Testosterone seems normal… what to make of this info?
Hemoglobin 12.8 (lab range: 11.5 – 15.0 g/dL)
Testosterone total 26 (2 – 45 ng/dL)
Testosterone free 2.5 (0.1 – 6.4 pg/mL)
If testing for pyyroles, why the need to test for serum zinc/copper/ceruloplasmin? Is it just to ensure accuracy of results?
Would you say this is a good website to get pyyrole testing from? A commenter above suggested it.
http://www.riordanclinic.org/mm5/merchant.mvc?Screen=PROD&Store_Code=BCL&Product_Code=LPyr
Regarding the undetectable D-Lactate… any theories as to why it’s undetectable? Is this a bad result or just odd? By the way, for my Metametrix stool test, I scored high for Lactobacillus sp. (5th percentile).
Actually I have not seen an ND yet. I was reading such positive reviews on Humaworm’s ability to wipe out pathogens that I was gonna give it a try. But now I’d rather get a professional’s help. I want to make sure to pick a good ND before booking an appt, but I’m not sure how to. I’ve looked on ND directories and Yelp but it seems like some of them write their own reviews! Chris Kresser is nearby, but he’s not open to newcomers yet. For someone possibly dealing with SIBO, parasite, and maybe Pyroluria, would you suggest seeing an ND? TCM? Is there another type of doctor I should be looking into? (I have seen 2 MDs).
I forgot to mention that the week of my urine test, I experimented with Epsom Salts as a way to get more magnesium. For 5 days, I soaked my feet in warm water/1 cup Epsom salt for 30 min. I think I overdid it!! That may explain the high sulfur. Oopsie!
Hi Monnyica,
The B6 result on the Metametrix test could either indicate pyroluria or just a straightforward lack of B6 in the diet (or absorption problems). I have low free testosterone too, though this could be due to poor zinc status or another issue such as adrenal insufficiency or lack of the right building blocks for hormones (also in some people, DHEA is converted to estrogen more than testosterone). It’s not really possible to say from those results what your zinc status may be – I would definitely get the right tests run.
Testing for pyroluria is notorious for false negatives because many labs do not handle the samples correctly – the pyrroles in the urine sample degrade quite easily so by the time the sample gets to the lab, the levels may be too low to generate a positive result. Many practitioners will treat “borderline” and even negative results in the presence of symptoms because the test is absolutely not foolproof (as with any pathology test really). In Australia, the pyrrole testing is done much more stringently than in the US, based on experiences reported on the Facebook group. To find a reputable lab in the US, join the Facebook group as I am not up to date with which labs in the US are the best. https://www.facebook.com/groups/pyroluria/
It’s important to get the plasma zinc, serum copper and ceruloplasmin tested along with the pyrrole levels (urine) as this will give an indication of current status.
Re the D-Lactate, I’m not really sur about why there is a DL result, perhaps that metabolite could not be detected? I have a few DL results myself which I should have followed up but haven’t.
As for a practitioner, I would definitely suggest a good ND because they will be able to help with interpreting your Metametrix test and order the other tests I mentioned (plus any others you need). Whereabouts are you based? I can ask around for practitioner recommendations or you may ask people on the Facebook group.
Even though you used the epsom salts in the days leading up to the urine test, I would still be suspicious of your result – it wasn’t just high, it was over range. I have observed as a layperson that many people dealing with chronic and “mystery” complaints that sulfur is usually a problem for them, often due to a mutation in the CBS gene. But again, you definitely need to hunt down a practitioner to help you sort through all this. I’d recommend trying to find someone that has knowledge of the methylation cycle as this is where the CBS comes in (plus a whole lot of other things).
Take care 🙂
Hi Allison,
Thanks for answering my questions! You’re so knowledgeable about this stuff. Let me know if you happen to have a website/blog. I’d love to check it out.
I have a few questions about prepping for pyroluria testing.
Should I fix the SIBO and parasite infection before getting pyrrole/zinc/copper/ceruloplasmin testing? (as to avoid false negatives since gut infections can cause malnourishment) or does it not matter?
Also I eat a lot of oysters everyday, which is full of zinc. Should I back off the oysters before getting my blood test?
Hi Monnyica,
Thanks for the compliment – that’s very kind of you.
You can go ahead and get tested for pyroluria and the zinc/copper regardless of your SIBO and parasite testing.
Please be aware that even though oysters contain a fair amount of zinc, they also contain a lot of copper which defeats the purpose when someone is trying to reduce their body levels of copper. Treatment involves restricting high copper foods (even those that also have good levels of zinc). The idea is to eat high zinc,low copper foods – there aren’t many of those to be honest. Red meat and pumpkin seeds are great in that regard. High copper foods also include chocolate (boo), avocado, cashews, beef liver (and other forms of liver). The diet changes need not be permanent, but in the early stages of treatment, it’s usually better to be stricter and then ease up once the zinc:copper ratio has become more optimal.
Definitely go ahead and get tested so that you can form a strategy 🙂 It may not even be an issue for you, but I think it’s good to get tested so that you know either way.
Good luck!
Allison
Hi Allison,
I notice you had a zinc “issue” (zinc/copper imbalance).
Just wondered if you ever tried one of those zinc taste tests (zinc tally tests), before &/or after you addressed the imbalance.
The zinc taste test is just something i have been ‘researching’ lately & I’m interested in personal experiences with it.
thx
Hi Darrin,
No I’ve never had the zinc taste test done – as far as I know, it is sometimes useful but not always. It really is better to see a trained practitioner and get the blood tests I mentioned.
Chris Kresser has written about the zinc:copper and also the taste test in the past: https://chriskresser.com/rhr-could-copper-zinc-imbalance-be-making-you-sick Under the sub-heading of the transcript “Get these tests done if you have nervousness, anxiety, or mood swings” you will see discussion about the zinc taste test.
Also someone in the comments posted a link to a paper about the zinc taste test.
Best wishes
Allison
Allison,
What is your perspective on antibiotics for PANDAS now that you used them? My anxiety and OCD is out of control right now, and I just discovered Strep B in my system. I am so ready for relief, I am VERY tempted to just take antibiotics! I am so tired of the fight for my health. But I don’t want to do it if it is going to ruin my health further. It just seems like all the natural antimicrobials would take too long.
By the way, reading this post back when Paul first posted it is what really made me decide to go ask my doctor to test me. I’d heard about it before, but this was the final push I needed. Thanks!
Hi Amber,
I absolutely felt that in my situation, the antibiotics saved my life. To anyone who hasn’t had severe panic disorder, that may sound like an exaggeration but when you are consistently on edge and almost non-functional, taking antibiotics can be a temporary quick fix to ease the problem. Keep in mind it took me 3 rounds (400mg twice a day for 12 days each round) of erythromycin before the veil lifted, and I took 6 rounds altogether.
I feel strongly that the underyling cause must also be treated though, I have an appointment on May 10th to pursue the fecal transplant – I really hope I will be permitted to undergo this treatment.
Good luck to you Amber – only you can make the decision but in my case, I don’t regret it. Either way, I already had dysbiosis before I took the erythromycin which would have to be resolved at some point with something like fecal transplant, so it was a no-lose choice for me to take the erythromycin. I would only regret taking antibiotics if I did not have dysbiosis.
take care,
allison
Thanks for replying, Allison. I just now saw it. 🙂
SO does that mean you do not feel antibiotics are a long term solution for getting well, but just a Band-Aid for temporary relief? Just curious.
I have an appointment mid July to see a doc in Jacksonville, FL (where I live) who is known as a PANDAS specialist. They say she treats it in her sleep. Fingers crossed.
Would love to hear what the fecal transplant specialists say!
P.S. My anti Dnase Strep B levels was 314 (with 120 being the highest in normal range).
Lower on the scale for most PANDAS diagnoses?
Copper 93 (70-175)
Zinc 87 (60-130)
Hi Amber,
That result shows you have either a previous or current strep infection so it absolutely warrants investigation – good you are seeing the PANDAS doctor. The levels would have been higher if you tested this previously, for example if you had strep throat at the time they would be higher. These numbers always change so usually with PANDAS, the levels are tested at numerous points to see what the pattern is.
I think antibiotics are needed to get the strep under control in the short term (before a faecal transplant for example) and sometimes possibly even in the long term after a faecal transplant depending on how successful the transplant was. A faecal transplant done in a clinic will always include antibiotics given by the clinic, though I don’t know how effective they are against strep in particular.
I am also investigating if strep is hiding out in other areas of my body like the nasal and sinus areas, and possibly tonsils. There is a psychiatrist in LA who treats Adult PANDAS and has written about it, and he says that strep must be located and resolved wherever possible.
http://www.psychologytoday.com/blog/attention-please/201107/evil-pandas-part-ii-adult-affliction-treatment
http://beverlyhillsshrink.blogspot.com.au/2012/03/adult-pandas-bare-facts.html
I’m planning to see an ENT about a biofilm protocol using baby shampoo as I have rhinitis so I want to use it for that and also ask him to assess me for strep in the sinuses, nose and tonsils. Apparently even the tonsils and adenoids can harbour strep in the absence of any obvious inflammation or infection. You can read more about that in the comments of those links above.
My doctor wants me on long term erythromycin, so I need to juggle that with faecal transplant. I don’t think that just addressing gut strep alone will fix this, which is why I’m going to the ENT and am also trying to find a neurologist to help. I had a return of symptoms recently and strep levels are high again in the gut, so I have to take a comprehensive approach as I think everyone does with this. I found a neurologist in Australia that has written about PANDAS (and I think he treats it) but he can’t help me because he only treats children and adolescents – so incredibly frustrating that this condition is not recognised in adults except by a very few professionals around the world.
Is your zinc level plasma or serum? It looks like there’s a minor imbalance, but the doctors that treat zinc:copper imbalances always test plasma zinc not serum zinc as the latter is always higher and they believe that plasma is a better indicator.
Hi Allison,
you will have to keep us updated on how you go with the ‘shampoo’ thing (please).
I wonder if its similar to what Chris Kresser discussed in a q&a here,
http://chriskresser.com/the-highly-effective-but-little-known-treatment-for-chronic-sinusitis
This interests me as i have a chronic runny nose, which would seem to be Not related to seasons or allergies.
A CT scan of my sinuses showed ‘mild mucosal thickening’, which may or may not be related to my my runny nose.
I’m glad this post prompted something in you – that is how I figured out the strep connection too, via the Power of Poo website. I am in debt to Tracey who runs that website. I know what you mean about needing relief. I also had a a good response to mirtazapine but that wore off after a few months and thankfully, I came across Tracey’s website and the lightbulb went off in my mind just in time 🙂
Hi Allison,
I was so touched to read your story and blown away by what you have had to experience. I admire your determination in taking every step to get yourself well again and wish you ultimate success in achieving optimal health mentally, emotionally and physically. I think you are incredibly brave!! Thank you for sharing your story with others. I hope it helps you as your sharing also helps others. Warmest wishes, Robyn
Thank you Robyn for such kind words – I will come back to your comment when I need to draw on some strength. I am still in the process of recovery (not quite there yet with everything) so this will really help me to keep plugging away!
Oh and Allison, I encourage you to keep up meditation, even if its only 5 minutes a day, and there is some great CD’s available to make meditation easier now (Perfect Meditation). I really believe our health picture is not complete, even with the most perfect diet, without meditation. There is a big body of scientific research out there to prove this. Once again, all the best, Robyn javascript:grin(‘:grin:’)
Thanks Robyn,
I used mindfulness meditation techniques at the height of the panic disorder, but my discipline has fallen away. I’ve done a couple of courses at a Buddhist Library so I have definitely used it. But your comment comes at a time where I’ve realised that going back to it (even without panic disorder) can only help me.
I really drew a lot of comfort from using mindfulness, I really do connect with the Buddhist teachings though I need to find some more discipline to practice regularly.
I have quite a few mindfulness recordings so I will get back to it! No excuses 🙂
What test should I ran if I want to check for streptococcus? Is a stool test helpful? Thanks.
Hi Chris,
Where are you based?
To test for streptococcus in the gut, a stool test is required however I know a researcher in this field believes that a high result for Anti-DNase B (one of the strep antibodies) usually indicates strep infection of the gut. This is a blood test and can be ordered by any MD or GP and is usually ordered with the Antistreptolysin O (ASO) titer though the DNase is considered to be more indicative.
In Australia, Bioscreen test for streptococcus in the gut but I don’t know which labs in other countries do this.
Good luck 🙂
Hey Allison,
I’m from Germany and I think Anti-DNase B is done regularly when tested for streptococcus here.
I’ve done the Metametrix GI Effects lately. Do you know if strept. would show up on this test? Otherwise I found a local laboratory which offers stool test for streptococcus.
Have you heard of the Japanese researcher Katsunari Nishihara? He thinks that mental illness is caused by intracellular infection of cerebral neurons via common enteromicrobes without pathogenecity.
And antiviral and/or antibiotics in line with other measures (similar to PHD) is the thing to do to cure mental illness. http://www.nishihara-world.jp/dissertation/pdf/100.pdf
Thanks 🙂
Hi Chris,
Unfortunately the Metametrix test doesn’t check for streptococcus only streptomyces – very frustrating!
Can you tell me the name of the lab in Germany that tests for strep in the gut? It’s always good for me to know which labs are testing this as there are not many around! Especially in Europe.
I will have a look at the Nishihara document – it looks fascinating.
thanks
Allison
Chris – if you do end up getting the streptococcus tested in the gut and also Anti-DNase, I would be interested to see if these correlate. In my case, they do, though I suspect strep may also be hiding out in different areas in me apart from the gut, so the DNase result may or may not be pointing to the gut (though it seems most likely given the Bioscreen strep results). I have been referred to an ENT doctor (Ear, Nose, Throat) who uses baby shampoo to break up biofilms so I’m hoping to eradicate strep wherever it might be hiding!
Hi Allison,
The laboratory can be found at http://www.hauss.de
I am going to test via stool and only if my doctor is willing to run a blood test – so it is covered by insurance – I will have Anti-DNase as well. I’ll let you know then.
I am interested in what you – or anybody else – has to say about the Nishihara document because frankly I understood only about the half of it.
Cheers
Chris
Hi Chris,
Thanks for the lab name, I will keep it on file as I do have people in Europe asking me about testing strep in the gut. Do you know if they accept samples from other European countries? I know someone in the UK is wanting to test for strep in the gut.
I will have a read of the Nishihara document – I had a quick scan last night and yes, it does look pretty complex. I’m studying nutritional medicine so I do understand some of it – what would be great is if Nishihara would write (or perhaps has already written) a more accessible document that lay people can understand and then hopefully take to their doctor if they want to follow up.
Good luck with the testing, I hope it helps you get some answers 🙂
I would also suggest trying to get zinc and copper levels checked – I can’t tell you the number of people who have this problem that are seeking help. Just this last weekend, I went to a classroom clinic for my course and there were 3 cases where it was obvious (to me, since I seem to be looking out for it) that there is a significant zinc:copper imbalance playing a role. I always tell people to investigate a few different areas when they are trying to decipher what is going on with their health – there is usually never just one factor at play, even if their condition is only showing one type of problem (eg. mental disturbance). It seems inflammation, zinc:copper imbalance and microbial infections are factors that can play a role for mental and behavioural disturbances. (Food intolerances also).
Allison
If you do get zinc and copper tested, what you need are:
– plasma zinc
– serum copper
– serum ceruloplasmin
All the doctors that treat zinc:copper problems always get plasma zinc – serum zinc always tends to be higher for some reason and the doctors believe that plasma zinc is more reflective of actual status.
Hi Allison,
my stool test for strept came back negative. I wonder if one stool test is reliable enough or is it like candida and parasites where you usually have to run a few tests?
You are right, both zinc and copper is low. But I don’t supplement because I get drug like reactions amd nervousness from almost all supplements for a few years. Makes me somekind untreatable.
My Metametrix test showed blastocystis. I am having a hard time to find a doctor who is willing to treat this and I am not sure if it even is something which should be treated at all.
Good question, I’m not really sure. It could depend on viability of the sample and lab technique. Can you access the blood test for the ASO and DNASE antibodies?
Hi Allison,
Thanks for the info. I talked to lab today and they said they accept orders from abroad as well.
Cheers
Chris
Hi Allison,
you will have to keep us updated on how you go with the ‘shampoo’ thing (please).
I wonder if its similar to what Chris Kresser discussed in a q&a here,
http://chriskresser.com/the-highly-effective-but-little-known-treatment-for-chronic-sinusitis
This interests me as i have a chronic runny nose, which would seem to be Not related to seasons or allergies.
A CT scan of my sinuses showed ‘mild mucosal thickening’, which may or may not be related to my my runny nose.
(i just posted this above as a reply, but easier to see here)
Hi Darrin
Will do. The ENT if you’re interested is Dr. Kwok Yan in Sydney. I haven’t seen him just yet (he doesn’t seem to answer the phone!)
Yes it is what Chris Kresser has talked about. When my doctor mentioned it to me, I remember Chris talking about it. So happy to find an ENT who is progressive!
Here’s more info about the protocol (similar):
http://www.boogordoctor.com/2011/02/5-step-program-to-eliminate-chronic-sinusitis/
I had sinusitis appear on a CT 6 years ago (around the time I was having all the post-viral episodes) so I’m hoping this helps me in my strep and biofilm-fighting escapades 😉
cheerio
Allison
Thanks Allison & good luck & pls do update. Hope Dr. Kwok Yan is a goodie.
I just went looking for a cheap nasal irrigator (ie. the plastic bottle type). Did not feel like forking out for a fancy powered one just yet.
Anyway, picked up a Fess sinu-cleanse starter kit for under $9 (chemist warehouse, Chatsood).
You get the bottle & 5 washes. I wasn’t actually after washes, but was happily surprised to see that the washes included xylitol. Surprised because i had heard that the xylitol washes had not be ‘allowed’ yet in Australia. May be that has changed now.
http://www.fess.com.au/our-products/fess-sinucleanse-hypertonic-wash-starter-kit/7C86A150A6E32042BB313CFDC726F1B6
Xylitol is supposed to do the biofilm thing (disrupt?) as well.
Hi Darrin,
Well it turns out I can’t get in to see him until October and he has 40 people on the waiting list!
So I might see if I can try the protocol for myself safely.
Xylitol is an odd one – I used to order it from iHerb in toothpaste, as the crystals for baking and also as nasal rinse. And a few months ago, iHerb added it to the list of items they won’t ship here. I contacted quarantine myself who confirmed it was OK to import but iHerb wouldn’t follow it up properly. So I had to get a 1kg bag from a personal trainer friend. Perhaps only xylitol for baking can be purchased here? Bizarre.
funny, i had a similar experience with iherb & xylitol.
xylitol powder/crystals are actually easy to get here, they are sold in a lot of health stores & vitamin shops.
i am guessing that the iherb blanket embargo on xlitiol may be due to the TGA classifying Xlear Nasal Wash as a medical device.
ref, http://www.naturallysweet.com.au/xylitol-faqs/#answer%2030
I think a lot of it is derived from corn though 🙁 I did manage to get a birch-derived one.
Hi Allison,
I just saw a question on paleo hacks here,
http://paleohacks.com/questions/201420/help-me-understamd-my-blood-test-results-acne-sex-drive-problems
where a user has posted some blood test results,
because she has posted up copper, caeruloplasmin & zinc, i thought of your expertise,
may be you could take a look & respond if you can shed any light on her numbers…
Oh you made me go back to Paleo Hacks!
sorry ’bout that 🙁 Allison, but thanks, looks like you helped someone out.
did you give up PH cos it was burning too much time or cos it went downhill…
Hi there, I stumbled upon this thread today as I’m looking for answers to my sons recent Bioscreen results and I suspect he has PANDAS. His Copper levels are also extremely high. He is only 4 and his OCD traits are evident, as well as separation anxiety and cognitive decline. Please can anybody suggest a specialist in Australia who has knowledge of this and particularly in children. I would also be open to a faeceal transplant if possible. Many many thanks in advance x
Hi Courtney
Where are you based? As far as I know, the only specialist who can assess for PANDAS in Australia is Assoc. Prof. Russell Dale at Westmead in Sydney. Are you able to get the ASO and Anti-DNASE antibodies tested (blood test)?
If you wild like to join a group who discuss bacterial gut infections and faecal transplant, there is a great Facebook group – instructions for joining are here: http://thepowerofpoop.com/archives/13
Is the high copper being addressed? Has he been tested for pyroluria? I assume so. Copper can be so hard to decrease – I’m about to start a compounded product called MT Promoter that boosts activity of metallothienin enzymes to help reduce the copper.
take care,
Allison
Here is info about Assoc. Prof. Dale: http://sydney.edu.au/medicine/people/academics/profiles/rdale.php
Thanks Alison for your reply, much appreciated. He has not had the blood test done yet. I will ask our Biomed Dr. We are in Perth, Australia. We are about to start GAPS diet which is as far as we have got. I am assuming that we will also be directed to start antibiotics to treat the Strep however I want to investigate the IV method as compared to the oral. Thanks so much for the link to the facebook, I’ll check it out.
Hi Courtney,
I’m so glad you’re getting answers – that in itself is so very valuable. As far as I know, the approach with PANDAS is to immediately start antibiotics as soon as an active strep infection is suspected (that is, after PANDAS is diagnosed and some initial antibiotics have been completed). Unfortunately,I can’t access anything other than oral antibiotics as there is no specialist recognition that strep can cause mental health problems in adults. I can’t see Russell Dale as I am an adult not a child. So very frustrating. He is a helpful person though, so you could email him to get some pointers on diagnosis for your GP to follow. Definitely the ASO and DNASE antibodies are important, kids with PANDAS have this testing done regularly to track the pattern.
Other things said to be good for step are lactoferrin (which is in colostrum or as a standalone supplement), xylitol and grapefruit seed extract (not grapeseed extract). I am using these along with erythromycin and looking to have the faecal transplant later this year to hopefully get on top of the strep once and for all. I am considering seeing a neurologist but am weary of seeing specialists and having to educate them about strep and mental health.
Good luck with the treatment for your son 🙂
Hi Allison, Can I just say thank you so much for your detailed reply, it means a lot. I will contact Dr Dale and see what becomes of that. I have an appointment with the biochemist on the 15th and I’ll report back. I will look up those supplements you mentioned. I’m really grateful for your reply. x
Hi Courtney,
good luck. I have had some amazing results this week using 15hr overnight fasts. The Perfect Health Diet has a whole chapter on using fasting to promote autophagy to fight intracellular pathogens like strep. After only a few days the thyroid pain I’ve had for five years which started after the throat infection in London disappeared just like that. I am more convinced than ever that strep infected my thyroid and I am determined to get rid of strep wherever it is hiding out in my body as it can re-infect the gut. This is why I had a relapse of symptoms recently – strep just came back pretty easily because I have not enough other bacteria to oppose it and also because it is probably still in other areas of my body aside from the gut.
Good luck Courtney, keep me posted. Can you try some fasting with your child?
Best wishes,
Allison
your story was great and so much informative as well as it gives me strength to fight against obsessive compulsive disorder
I’m so pleased I came across this story. It confirms for me many things I have suspected about my own health. I suffered severe anxiety in my mid twenties and have struggled ever since. I have also suffered abdominal pain with no explanation for many years. My digestion started to get really bad last year and I was having problems sleeping, then one afternoon I suddenly came down with severe fatigue which didn’t go away. I went to doctor after doctor and was told I was anxious and just needed to chill out. No one could tell me why I was so fatigued or what was happening to my digestion. The other thing that was happening was that I was becoming more and more allergic to different things. My immune system was going haywire. Last week I was so tired and achey and I had severe stomach cramps, that all I could do was lie on the couch and sob. I remembered I had some peppermint oil capsules that i’d been meaning to try for the abdominal pain, so I took one and was surprised that I started to feel better. The next day I woke up and felt more refreshed than I had in over 9 months. I took some more peppermint oil as I suspected it may be helping. I took the peppermint oil with me to my naturopath and she said it was good for me and to keep taking it. I had 4 days of feeling a lot better than I had for such a long time. Unfortunately I crashed the other day after drinking a couple of beers with dinner, and have spent the last 3 days recovering. But I can feel that the peppermint oil is helping and I’m getting better each day. I believe it’s killing off the bad bacteria that I now believe has been the problem all along. I truly believe I can heal my gut through avoiding the bad stuff that feeds the bacteria and putting in the good stuff, coupled with taking apple cider vinegar before meals and peppermint oil between meals. I am still very unwell but I really think I’ve managed to unlock the mystery. I just wish that the medical profession knew about this and made gut health a frontline treatment for fatigue, anxiety and depression. It just makes so much sense to me and I finally feel like there is hope that I will one day lead a normal life. Thank you for sharing your story. It was like reading about myself. I’m so happy that you have been able to solve the mystery for yourself and you’re on the path to good health. I have started making plans for my future again, which shows how much I’ve improved in just a few days.
This is interesting to me due to my situation. Anxiety, digestive issues, thyroid, adrenal… I have never suffered from anxiety on a regular basis, but have had occasional occurrences of night terrors/panic attacks. As a child it was night terrors and the one episode I can recall was shortly after my family moved overseas. As an adult I can best describe it as sort of a chemically induced fear that I would wake up with. I have had them the last few days and the last time was 2 years ago. Similar situation where it was instrumental in ending a long relationship and I was always being told I was healthy and it was most likely mental. I have also had unexplained severe gut issues during this time. I have also tried every remedy such peppermint oil, black walnut, wormwood, iodine, eliminating artificial sweeteners and sugar alcohols, coffee enemas, you name it. Some work well, but never permanently.
One thing in common between this week and 2 years ago is dental work involving amalgam fillings. 2 years ago was having two fillings drilled out to be replaced. 1 week ago was having the first quadrant of amalgams removed by a biological dentist and replaced with non metallic materials. I am waiting on hair and urine analysis to see if I have high levels of any heavy metals.
In my case it seems to coincide with vaccines and dental work. I am guessing it has to do with mercury and I am pursuing that. My blood work shows I am severely deficient in vitamin d and possibly zinc. Supplementing with zinc, B12 and vitamin D emulsion has helped my gut and energy levels tremendously. Actually molybdenum also helped tremendously with the irritation and spasms in my colon.
I am curious how many others with these issues has amalgam fillings.
I have a feeling it’s very, very common. I would strongly suggest checking out the ‘frequent-dose-chelation’ yahoo group, or google “Andrew Hall Cutler PhD” or “Andy Cutler” to find his page about mercury toxicity and how to safely — and inexpensively — chelate mercury and other heavy metals from the body. But if you’ve just had dental work, then there are certain chelators that must not be used, and one that is safe. There are also other nutrients like high-dose vitamin C and selenium that may help.
I have had hair testing and have high excretion of mercury and aluminium. I have used EDTA which was a mistake as it leeched a lot of zinc as shown in blood testing (I monitor zinc and copper every 3-6 months). I have a mutation on the CBS gene so I won’t be trying any sulfur based chelators like DMPS or DMSA – I know many people who have gone backwards doing these even under the care of medical professionals. I don’t doubt at all that mercury or other metals can be a factor in mental or behavioural disturbances. Just one factor amongst many possible ones. I plan to boost glutathione levels and also promote the metallothienin enzymes – these are the body’s intrinsic mechanisms for helping the body to excrete heavy metals. I think chelation agents are risky.
Hi Allison,
I was wondering if you could help me out. As a young child I was hospitalized in Madrid, Spain due to a “mysterious” viral infection that no doctor could figure out. This was at age 9. I am now a 31 year old adult and have suffered from extremely debilitating Depression,Anxiety and awful OCD. I have been hospitalized 3 times because of these “psychiatric disorders” throughour my adult life and have literally been put on every antidepressant, benzodiazepine and sleeping pill in the book. I still live in Spain and I don’t even know where to begin. Would you mind telling me what tests I should get done and where I should start?
Carol, Besides checking for strep, check out StopTheThyroidMadness.com and WilsonsSyndrome.com. I would have never believe if someone told me I had a thyroid issue, lo and behold…
Also, see if you can find an open-minded doctor to give you a trial of antivirals. Warning: I took the full 2 tablets a day that my doc prescribed, which made for major emotional upheaval. Had to back up to 1/4 tablet and work my way up.
The thyroid meds were life changing for anxiety/depression! Unfortunately, something in my regimen is off now, but working on figuring that out.
Allison,
I’ve been dealing with intense anxiety and panic attacks, a lot of symptoms that you describe, for the past 2 and a half years. I’m fairly certain it’s gut related, I feel terror all the time, like I’m screaming on the inside, and cry constantly. Crowds and driving can be a nightmare, I had stopped driving but slowly started up again. The doctors that I’ve been to tell me it’s in my head. A metamatrix stool test just showed h pylori and low levels of good bacteria. I experience very vivid dreams, constipation, fatigue, off and on insomnia, what feels like hypoglycemia, slight salicylate and histamine intolerances, occasional acid reflux…it seems like the list is endless 🙁
I’m located outside of Chicago, so if you know of anyone in the area I could go to I would really appreciate it. I’m interested in getting strep in the gut tested, as from what you wrote that sounds like a plausible idea. Do you have any other suggestions for me to look into?
The treatments I’ve used: mindful breathing, I just started seeing a therapist/hypnotist, yoga, walking, implementing a lot of the PHD, a big cup of kefir daily (kefir is what has helped me calm down the most,I’ve occasionally stopped or cut back because of the histamine but then the terror and panic rises), fecal transplant (I took antibiotics for sibo only for a few days because it was making me feel suicidal).
Any suggestions would be greatly appreciated, I’m getting tired of doctors telling me it’s all in my head.
Alex-
You should call Mensah Medical in Warrenville, IL. I had experienced severe(and I mean severe) panic attacks and generalized anxiety my entire adult life. After considerable research, I found Mensah Medical whose two doctors specialize in healing mental health issues using supplements after conducting numerous blood tests to determine that I have a thing called undermethylation, along with a severe copper/zinc imbalance. I have been on their protocol for about 4 months now and I am a different person. In the last 4 weeks, I have not experienced any anxiety whatsoever and am beginning to understand how “normal” people function. I think Allison has mentioned these issues in her comments as well. Since you are likely close to Mensah, please look at their website and facebook page where they have videos and articles done by their doctors describing their protocol. It has changed my life. In a true healing regimen, you may experience periods where you feel worse before you feel better, but each time you emerge through this healing reaction, you experience a higher level of well-being. Life is good now. Good luck and let me know if you have any questions!
Jennifer, I am really interested in your story of recovery. Is there anyway I can contact you personally via email?
Jennifer,
I looked at their website. They do only nutrient therapy? I get negative side effects from just about every vitamin that I’ve tried to supplement with.
Hi alison and others,
I know that my 9 year old daughter has PANS, which is the version of PANDAS that kids get from the Mycoplasma bacteria instead of Strep, but we can’t find a GP or pediatrician in Australia to recognise it as a legitimate illness.
Do you know of anyone? I hear there is a Dr on the Gold Coast who supports PANDAS/PANs, but I can’t find him.
Any help would be appreciated.
Jo
If you check the biobalance website there are doctors there that support PANDAS.
dr duff in Melbourne or Russell dale at Westmead (I think)
Absolutely Carol!
I am feeling so good I want the whole world to know about this 🙂
I wanted to add to my comment that my daughter is being treated for ocd/pandas(or what we thought was pandas) with Mensah Medical’s protocol quite nicely. I also have to emphasize that this protocol would not work as brilliantly as it does without being on the perfect health diet.