A Tale of Recovery from Panic Disorder and OCD

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.

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220 Comments.

  1. What an amazing story Allison, thank you for sharing, these are difficult conditions to deal with and it helps so much to share information with each other. Your story has been really helpful in understanding my own symptoms, as I continue on this very interesting journey of discovery. I recently did a bioscreen test and found, as expected after reading your story, streptoccocus overgrowth. I suspect that it has been there for a long time as I have had problems with anxiety and displayed OCD like behaviours from childhood, going on to develop panic disorder in my teens. As a teenager and young adult I also developed IBS and CFS (CFIDS) which have recently (10 years on) worsened along with some other very unpleasant symptoms of stress sensitivity and anxiety. I discovered that I had a number of nutritional deficiencies (Selenium, Vit D, B 12) and signs of impaired methylation through a homocysteine test which came back elevated (23). I have also done some gene testing to confirm multiple mutations in the methylation pathway e.g. MTHFR which affect B12 metabolism and folate. After reading some of Amy Yasko’s work on autism I was hoping to find out about the sulphur mutation but it wasn’t included in my test which came through Smart DNA. I don’t seem to have any bad reactions to the sulphur though. I haven’t taken any antibiotics for strep (yet) as the practitioner suggested a more indirect approach with supplements and increasing alkalinity since strep thrive in an acid environment. I don’t know if this has helped much especially since strep create acidity so it is an uphill battle, also Dr Butt who studies gut bacteria in Melbourne, mentions that sugar feeds strep so I feel that following a low sugar/carbohydrate diet is more important and have always felt better when I have done this. I would also like to find a long term solution to the dysbiosis issue. My doctor actually did mention the fecal donation treatment to me over a decade ago when first diagnosed with IBS. Would love to hear about your experience with this when you have the results Allison. Would be great to keep to keep in contact and share info too if you feel like passing on an email address, I am also in Australia and on a similar personal and career path towards treating symptoms of anxiety holistically and generally raising awareness about these underlying physical conditions that get glossed over by doctors. It’s a nightmare to have one of these conditions, let alone not being taken seriously.

  2. Hi Gina,

    Thanks for sharing your story – it sounds very similar to mine.

    Personally, if the strep levels are really high, sometimes antibiotics are the only way to go. Having said that, you can also try these things for strep:

    – lactoferrin or colostrum
    – xylitol
    – grapefruit seed extract (not grapeseed)
    – 15-16 hour overnight fasts as per the Perfect Health Diet book, that outlines how effective fasting is for pathogens like strep

    The first three items are according to Amy Yasko.

    Fasting has been very helpful for me, I believe it is keeping strep under control until I have the faecal transplant (in two weeks time).

    Have you been tested for pyroluria or had your plasma zinc and serum copper tested? It sounds to me like this may be a factor too – poor stress tolerance is a hallmark of this condition and the high copper state can often lead to an overgrowth of gut pathogens (I don’t know the exact mechanism behind this, it may be more anecdotal information from practitioners).

    Re the sulphur mutations (SUOX and CBS), sometimes you can see an effect on sulphur metabolism via an organic acids test (pricey at around $400 from Metametrix) or a Functional Liver Detox Profile from Healthscope which is $140. My sulphations levels are too high which matches with the heterozygous CBS mutation I have. I tolerate sulphur OK it seems (aside from sulphites in wine/cider), but I try not to have too many sulphur supplements.

    Feel free to email me:

    cinnamonproducer77 [at] gmail [dot] com

    Can you post a comment here to let me know when you have emailed me – that’s a spare email address, I will give you my “proper” email address once you email me at the above address (didn’t want to publish my proper address just in case the automated spam bots find my email address!)

    Allison

    • You could also order 23andme testing to find out your CBS status too, but the shipping cost is ridiculously expensive for that test!

      • Also homocysteine being too high can be from low B6 (apart from low B12 and folate) – B6 is deficient in pyroluria.

        • There is no such thing as pyroluria.

          • Gee – thanks for that contribution!

          • javascript:grin(‘:roll:’)Some really great scientific minds have proven the existence of Pyroluria, and done great good in treating this debilitating disorder in many people. Who are you that you question the likes of Dr. Carl Pfeiffer, Dr. Abraham Hoffer, Dr. Hunphry Osmond, and Dr. William Walsh? I myself have Pyroluria. I was diagnosed at the Pfeiffer Treatment Center when Dr. William Walsh was the senior scientist, so I know that it is real.

          • These days it’s called Pyrrole Disorder by researchers such as Dr William Walsh (now of the Walsh Institute in Illinois) whose work trained the doctor that diagnosed me and treated me. After 20+ years of very similar symptoms to those described by Allison I consider myself ‘cured’ in just 2 weeks.
            Obviously all these conditions are similar and seem related in some way so it may not be THE solution for everyone but it’s worth considering.

  3. Hi Allison,

    Thanks for this, I have sent you an email now, and will write back in more detail soon!

    Gina

  4. Hey ! Im 24 years old and facing the same symptoms as you did since i was 15.Tried antidepressants, benzos…all of this stuff.Everytime i take some antimicrobials all my symptoms get 100x worse.Its clearly and infection.And i tested positive for a strep infection when i was 15.Could you please give me the link to that article you have read? I couldnt find it on the power of poo blog.Thanks !

  5. And can you please tell me what blood test you took for the strep ? im only aware of the Anti-streptolysin aka ASLO…

    • Hi Mario
      I initially had a stool test done which picked up the strep, not many labs have stool tests that look for streptococcus – I went through Bioscreen in Australia. About a year or so later, my doctor tested DNASE and ASO by blood – my DNASE was elevated over range but ASO was in range. DNASE is supposed to be a more sensitive marker, but it’s ideal to get both tested at the same time.

  6. Hey Allison,

    So my doctor, supposedly a super duper PANDAS specialist, tested me for PANDAS, and sure enough, my Strep B markers were high. However, she does not think it is affecting me since my immune system panel looks “beautiful”. Sigh. At least I have had tons of relief through T3 thyroid meds, Deplin (methylfolate), magnesium and B12 shots. But I still feel there is room for improvement. Almost wish she would put me on a trial of antibiotics.

    • Hi Amber,

      It’s quite disappointing that you have a high positive strep result and potential symptoms of a strep-mediated mental health problem but the doctor won’t even try antibiotics. Can you go back to her and insist? It took 3-4 rounds of erythromycin before the black cloud of panic started to lift for me.

      I don’t think enough is known about PANDAS and other strep-mediated conditions for the doctor to rule out strep as a factor altogether. I am convinced that eventually, more conditions that are not the same as PANDAS but involve strep will be discovered as a factor for mental illness.

      Considering that erythromycin is quite safe and affordable, I think you should go back and request a trial. You will just need to consider what to do about replacing gut bacteria at some point though.

      In the meantime, some things you can do that may help:

      – overnight intermittent fasting (As per the chapter in Perfect Health Diet)
      – strep in the gut apparently thrives in an acidic environment, so my doctor had me taking bicarb soda in water well away from meals (or Alkamax)
      – lactoferrin or colostrum
      – xylitol
      – grapefruit seed extract

      I hope you can get some progress with these strategies or hopefully convince the doctor for a trial of antibiotics.

      Is there a functional medicine/integrative MD you can see that might help?

      take care,
      Allison

      • Antibiotics aren’t necessary, and have been shown in many cases to permanently alter gut flora.

        Surprisingly, simple baking soda will work for strep infections:

        http://www.ncbi.nlm.nih.gov/pubmed/12017929

        Also, one little dirty secret about xylitol — it promotes oxalates.

        • Kelly – my doctor had me taking baking soda every day between meals as strep prefer an acidic environment. It did not work for me.

          Before making simplistic statements and assumptions, please have some consideration for the person who has lived through this themselves.

          I have found fasting to be helpful for strep, but in my case, I was in such a bad way, that I don’t regret taking antibiotics. They gave me my life back. If someone has a lower level of strep and isn’t so badly affected, I am all for using less risky interventions than antibiotics. In my case, I was on the verge of suicide so again, I don’t regret taking antibiotics.

      • Dear Allison,

        How rude of me to forget all about responding to your helpful comment! Thank you for letting all of us learn from your experience and being willing to get on here and write us back! Really grateful! (I’m the Amber above.)

        I got the courage to ask my doc for antibiotics per your suggestion, and she did give me a 10 day round of Zithromax (Azithromycin). I was already having a nosedive when I started two days ago, but it seems to be getting worse, and I have no way of knowing wether the antibiotics are what’s making it worse, or if it’s just psychological triggers that would have cause this worsening even without the xbiotics (very possible), if that makes sense.

        I know that everyone is different, but you described feeling like you were “hit by a truck” when you started the antibiotics. Could you give me a few details about what you felt like/what the side effects were? I am primarily interested in see if it caused your anxiety/OCD to WORSEN for the first couple rounds? Or did it just stay at the same level of intensity before starting?

        I know it was probably a while ago for you. Just curious if you can remember from your experience.

        • oh PS, She is a functional Dr., but I guess just didn’t think the PANDAS would be active (despite pretty high DNASE) since my immune system looked great.

          • It may well not be PANDAS but there are surely other ways strep can cause mental health problems – I think that’s a bit presumptuous of the doctor but I don’t think there is much research out there about strep and mental health outside of PANDAS.

          • It was so brave of you to push through so many rounds of antibiotics without knowing for sure if anything would happen the next round! What made you so determined to keep trying?

            And you did 2x/day? I wonder if Zith is the same strength in one pill as Enryth…Googling.

            I’m pretty sure if nothing good happens after this round, my doctor (supposed PANDAS treater) won’t think it’s important to try another round or two or three. But we’ll see. If she’s hesitant to dose out more (which I think it’s good to be hesitant sometimes), I’ll have to decide whether to push her for more, get another doc, or just say it’s not worth risking my gut health for something I’m not sure will even help in my case. :/

        • Hi Amber,

          Glad you managed to get the script. I remember feeling not much at all with the first round of antibiotics, neither good nor bad but perhaps my memory is hazy as that first round didn’t have dramatic effects (so I’m less likely to recall).

          I was paying more attention when I had subsequent rounds – apart from positive effects with reduction of panic attacks , the negative symptoms were purely physical – very achy back and neck muscles, very low energy. It was like having a really bad flu with all its aches and fatigue. It happened with pretty much every round of erythromycin except perhaps for one round where either my body got used to it or the strep levels were low by that point. I don’t know what mechanism causes those side effects, whether it’s bacteria dying off or something else. So, my psychological symptoms didn’t get worse, but it’s always possible that this could happen. From memory, the side effects would kick in about 5 days in, not early on in the course. In all, I think I did 10 rounds of 12 days over about 2 years. So, that gives you an idea of just how hard it can be to get on top of bacterial overgrowths.

          Don’t forget to add in things like xylitol, lactoferrin or colostrum. And of course the 16 hour overnight fasts seem to be very helpful for bacterial overgrowths. I’m not sure about grapefruit seed extract anymore, some naturopaths I am on a group with believe that it is too indiscriminate and may kill off too many types of bacteria, not just strep alone.

          Hope that helps, don’t give up 🙂

          • Thanks so much! Hopefully this will be worth it. Elevated DNASE in the 300s has to count for something.

          • Yes it was 2 x 400mg erythromycin every day for 12 days x 10. The 10 was spread out over two years though. Initially did only one round with no change, then found info that was the lightbulb moment so went back to my doctor and did another 2-3 rounds back to back which is when I noticed I was feeling better.

            The lightbulb moment was finding my friend Tracy’s blog http://thepowerofpoop.com/ (but the previous incarnation) and it all made sense. She had the same problem I did and the same testing here in Australia. I am so thankful I found her blog.

            Based on my experience (biased of course), I don’t think 1 round of antibiotics will be enough to give you an answer.

          • Gulp…well…crossing fingers that she will give me more and that I won’t be tearing up my gut only to see no results. Sigh.

            I noticed you do well on T3 only meds as well. They were a total life changer for me. I personally had extremely high (38) RT3 compared to T3, so that’s why I needed T3 only. But now on paper (labs) I appear hyperthyroid, though I still feel hypo. The whole cellular uptake problem…it’s in the blood, but cells not using it. (wilsonssyndrome.com) I know this is usually caused by stress, but sadly, it’s a vicious cycle. Get off the meds, get anxiety, have to get back on the meds.

            I know that’s somewhat off-topic, but I know thyroid is (1)paramount to mental health in and of itself, (2) can be thrown out of whack BY chronic infections, and (3) is important to immune health to OVERCOME those infections, like strep!

        • Hello!
          It’s very reasonable to consider that this antibiotic would worsen psychiatric symptoms. As a psychiatrist focused on gut/brain axis and the microbiome (I have articles on my site http://www.kellybroganmd.com), the deleterious effects of killing beneficial flora are real. This is a friend’s blog that also discusses the mitochondrial issues surrounding antibiotics. http://www.hormonesmatter.com/fluoroquinolones-101-antibiotics-to-avoid/

          • Hi Dr. Brogan, I was surprised to see your comment because I follow your posts on Fb and read your site. Thanks for your insight.

            Would you think that there are still times when antibiotic use is more helpful than harmful, as in a case of PANDAS/severe OCD and high strep levels?

            Thankfully, it sounds like the enrythro/Zithromax are not in that class of antibiotcs, but I don’t question the harm they can still do.

          • Hi! Based on my training, we first use botanicals (berberine, oregano oil, etc), and consider antibiotics if necessary. Many of my colleagues use antibiotics with good results, but they do so thoughtfully, obviously. Alex Vasquez has some good immune-oriented protocols…

          • Gotcha. I wish I had started with a practitioner that might have started me on more natural path…but I guess I got to the point where I couldn’t keep searching for answers.

            Hopefully if my doctor has me do another couple of rounds, it will be worth it in the end. I hate the idea of doing it with no results. But I guess there is no way to know unless I try.

          • Kelly,

            My issues for the past 2-3 years have been anxiety, panic attacks, dizziness, hypoglycemia, insomnia, various food intolerances and fatigue. A couple of months ago I discovered enteric coated peppermint oil and it’s been a godsend! I’ve been taking 3 a day for the past 2-3 months and it’s helping so much with everything except for the hypoglycemia. Also, when I don’t take them my symptoms come back. I’ve noticed my anxiety’s the worst when I feel bloated. If take a peppermint capsule at that point an hour or two later the bloatings down and so is the anxiety 😀 It seems like the bad bacteria must be emitting something like a gas? And when the gas is neutralized most of my symptoms disappear. . . I’ve added in two more things this week, one clove of crushed raw garlic in the morning in water and an enteric coated oregano capsule before bed. So far so good! Any further suggestions or ideas? I’d like to get this annoying hypoglycemia under control as well, it’d be nice to be able to do some intermittent fasting without feeling like I’m going to pass out or panic (I also get panic attacks when I don’t eat).

          • Dr Kelly,

            My children have a strep infection and one developed a rash (scarlet fever I assume). Should I get antibiotics for this or could grapefruit seed extract work? Just don’t know how much to give. They still have sore throat.

  7. I’ve been experimenting with a million things for anxiety, dizziness, fatigue and insomnia but currently am taking LDN, HCL, the occasional no-fenol, kefir and using reduced breathing exercises. The one persistent, annoying symptom is the dizziness and insomnia. I’m pretty sure it’s all gut related, last night I had a big cup of kefir and hadn’t had any in a week. My vision cleared up a few hours later and I slept like a rock. I’ve had so many tests but haven’t found it. Does that sound like it could be streptococcus? On the metamatrix stool test the only thing that showed up was h pylori and low levels of good bacteria.

    I’m not sure what to do at this point, I’ve been having these symptoms for more than 2 years. I’m almost considering just trying the antibiotics for strep.

    • Hi Alex

      It could really be any variant of dysbiosis contributing to your problems, not necessarily strep. Are you able to get ASO and Anti-DNASE (strep antibodies) tested by blood draw to see if there is a strep issue in the body (it may or may not be gut-related if positive though). Another affordable set of tests is plasma zinc and serum copper to see if these are not in balance. Do you have a good doctor who can run these for you?

      Allison

    • Oh God I also want to know how to manage hypoglycemia. It’s such a nightmare. I actually what triggers it considering I have not diabetes?

  8. Wow, this article has really got me thinking.
    Ever since I was young I have had on and off issues with ocd type ticks and ‘having to say certain sentences’ over and over otherwise it was like doomsday was coming to town. But it has always only ever been a mild issue in the sense that I could go on with my life without it really becoming excessively annoying. However, last year I got sick suddenly and felt extremely weak, along with a horrible sore throat that would never go away. I stayed like that for a week before going to see my doctor who told me I had strep. I took antibiotics and it seemed to go away after 2 weeks, but not eve 3 days later it was back again and just as bad. I eventually got rid of the sore throat, but I was prone to fatigue and illness for nearly 3 months later…I also think the strep bacteria may have caused some issues with my ocd, because ever since I was sick I have had more severe symptoms of ocd with highly disrupting tics and ‘must repeats’. Your article really made me wonder if my issues are related to my having gotten strep.

  9. Dear Alison,

    What a great read and a very interesting story. I work as a Clinical Psychologist in Australia and happened upon your blog when researching mental health and gut and Pyroluria etc.. This is such an area of interest to me. I share your frustration regarding mental health and gut health and bacteria and such. How we compartmentalise parts of the body like they don’t all work together, particularly the role of our physical health and mental health. Things are changing slowly and your story and others like it help to get the word out. Have you seen Kelly Brogan’s website, an Holistic Psychiatrist, there is a god! Thank you for sharing your amazing story and well done for doing your own research and getting to the bottom of things.

  10. Hi Alison

    Do some research on bovine colostrum and its antibodies to strep. Maybe also check out mutiflor which is for gut dysbiosis.

    best of luck

    • thanks Chris!

      I had low e coli levels – Mutaflor and Arabinex combined unfortunately didn’t help (was on this combination for months and it had no effect on the levels).

      Are you saying that bovine colostrum is a good thing or a bad thing for those with strep overgrowth?

      thanks!

    • Anyone have information on BLACK SALT…aka..KALA NAMAK ..in India. This salt from the himalayas is supposed to address digestive issues and could possibly help with ANXIETY/PANIC disorders. THANKS.

  11. Hi Alison,

    Your story is very inspiring! I have OCD, Tic disorder, general anxiety and panic disorder. My symptoms first presented around age 5 (after first having tonsillitis) on and off but came back pretty much permanently at age 16 after a serious bout of tonsillitis. I am now 34 and have suspected PANDAS for over a year after much research. I have been to many drs and they all look at me blankly when I mention it. It’s very frustrating! Can you recommend anywhere in Melbourne I may be able to get help?

    • Hi Jen,

      I would suggest called up Bioscreen lab in Melbourne to ask them for a GP recommendation, I’m not too familiar with doctors down there.

      I will ask a friend though about her current doctor.

      Will get back to you!
      Allison

  12. Hi there Allison,
    I was wondering whether you have Hypermobility Syndrome. I have similar problems to yours. The reason I am asking is that it is a relatively common condition but Drs are generally unaware of it and people often get symptoms like you have described. I hope you don’t mind me asking.

    Criteria for diagnosis:

    5 point hypermobility questionnaire (Hakim and Grahame 2003).
    •Can you now [or could you ever] place your hands flat on the floor without bending your knees?
    •Can you now [or could you ever] bend your thumb to touch your forearm?
    •As a child, did you amuse your friends by contorting your body into strange shapes or could you do the splits?
    •As a child or teenager, did your kneecap or shoulder dislocate on more than one occasion?
    •Do you consider yourself ‘‘double-jointed’’?
    Answering yes to 2 or more of these questions suggests hypermobility with sensitivity of 85% and specificity 90%.

    Box 1 Beighton score5
    Give yourself one point for each of the manoeuvres you can do, up to a maximum of 9 points:
    ▪Can you put your hands flat on the floor with your knees straight? (1 point) May be negative in those with flat feet and tight hamstrings
    ▪Can you bend your elbow backwards? (left 1 point, right 1 point) 1)>10° in females 2)>0° in males .When fully extended, the arms bend further than normal (beyond straight).
    ▪Can you bend your knee backwards? (left 1 point, right 1 point)
    When standing, the knees are abnormally bowed backward when viewed from the side
    ▪Can you bend your thumb back on to the front of your forearm? (left 1 point, right 1 point)
    ▪Can you bend your little finger up at 90º (right angles) to the back of your hand? (left 1 point, right 1 point)

    Box 2 Brighton criteria5
    Major criteria
    ▪Beighton score of >4 (either currently or historically)
    ▪Arthralgia for longer than 3 months in four or more joints

    Minor criteria
    ▪Beighton score of 1, 2, or 3 (0–3 if age 50 years or older)
    ▪Arthralgia (>3 month duration) in one to three joints or back pain (>3 month duration) or spondylosis, spondyloysis/spondylolisthesis
    ▪Dislocation or subluxation in more than one joint, or in one joint on more than one occasion
    ▪Three or more soft tissue lesions (eg, epicondylitis, tenosynovitis, bursitis)
    ▪Marfanoid habitus (tall, slim, span greater than height (>1.03 ratio), upper segment less than lower segment (<0.89 ratio), arachnodactyly)
    ▪Skin striae, hyperextensibility, thin skin, or abnormal scarring
    ▪Ocular signs: drooping eyelids, myopia, antimongoloid slant
    ▪Varicose veins, hernia, or uterine or rectal prolapse
    ▪Mitral valve prolapse

    Requirement for diagnosis
    Any one of the following:
    Two major criteria
    One major plus two minor criteria
    Four minor criteria
    Two minor criteria and an unequivocally affected first degree
    relative in family history

  13. Hi, Allison. Sorry that I’m so post happy today! I just thought to ask…if you don’t my me asking…if you had the faecal transplant you were talking about getting done and how it went?

    Also you mentioned tonsils…I saw some doctor mentioned how tonsils are very connected to OCD. I personally have had random tonsil swelling/pain and tonsil stones ever since I was 15. But I know it’s “major surgery” now. Ugh. Have you considered it? Just thought we should start a tonsil discussion. 😛

  14. Hi Allison,
    Hypermobility (flexible joints), although benign, can pose multi system problems-mainly related to postural stress (although not necessarily apparent), response to infection, gut immunity, dysbiosis and leaky gut. It goes on and on due to the inherent collagen weakness (our body is made of 60% collagen). I am not saying you have it. I only want to create awareness of this condition which is said to afflict 10% of European population.

    http://www.ncbi.nlm.nih.gov/pubmed/20963520
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3365276/

  15. Following with interest

  16. My daughter contracted PANDA from a strep infection and had horrible OCD symptoms until we found the research of an Australian named Trevor Marshall and his Marshall protocol. We did not do the entire protocol but we took her off supplemented vitamin D(it is really a secosteroid hormone) and gave her pulsed minocycline for 6 months. Her ocd symptoms were gone after several weeks of treatment and have not returned in 10 years so far. Good luck and many blessings in your journey. Sam

  17. Hi I wanted to know if erythromycin is the only antibiotic that’s good to treat for pandas. Could a zpak also known as Zithromax work also. Can you also repeat the dosages.

    Thanks

    • Hi,

      I really don’t know the answer to that question, you would need to do some more research and perhaps consult with a doctor that treats PANDAS.

      Also keep in mind that bacteria can become resistant to particular antibiotics if the same one is used repeatedly.

      I highly recommend trying some overnight fasting for 16 hours as it is helpful for strep. Also things like xylitol, baking soda (away from meals), grapefruit seed extract, lactoferrin.

      Best wishes,
      Allison

  18. Allison, do you have an email you can be contacted at ? Would love to discuss a few things with you. I can relate to this story you shared so much.

    • Sure – it’s narison [at] gmail [dot] com

    • Brandon, did you happen to post or reply to something related to OCD on youtube? Your picture sounds familiar and if you are indeed the same person I was wondering if i could actually ask you a couple of questions as well?

  19. Email me as I have answer of your questions as I am a patient and went through all of this but now free of symptoms.
    contact me as this story resembles to my friend and it relates to me somehow.

    • Hi Nina, can you please share what worked for you? I do not have your email? I am struggling. Currently on a round of emycin. Thanks

  20. Hi Allison, and Paul,

    Thank you, Allison, for sharing your story!

    I have been working to heal my own version of Depression/Anxiety/Panic/OCD for many years now – and my latest chapter (the past six months) have been greatly influenced by reading The Perfect Health Diet.

    With the hope that my experience can help others, I’ve just (with some trepidation!) posted my story here: http://www.lifeisapalindrome.com/updates/thinking-about-me-and-ocd . I’m intending a post in the near future to outline the changes I’ve made in my diet over the past several months.

    I am hopeful that my body can be made strong enough to fight additional infections. I have experienced profound Results (although not all positive or linear!) from the consumption of resistant starch, and I am convinced that the gut/brain connection is one to be profoundly respected and investigated.

    Thank you for all that you do.

    Regards,
    Sarabeth

  21. Have any of you looked into the gaps protocol. The point if the protocol is to heal the gut and repopulate it with good bacteria. You have to follow a strict set of dietary guidelines but it is aimed to “heal and seal” the gut lining to prevent toxins, undigested food, parasites/yeast from entering the blood stream and passing the blood brain barrier. The book by Natasha Campbell mcbride is called “gut and psychology syndrome” and covers much of what has been discussed in this post. What’s best, is that once you complete the program, which consists of mostly whole foods, lots of bone and meat broths, good fats and fermented foods (to repopulate good bacteria,). You can come off of it, however it could take a few years. Look up Natasha Campbell Mcbride on you tube. There are a few good videos that explain how and why the protocol works.

  22. Is canker sores from PANDAS

  23. I get canker sores when I get wheat from a “gluten free” meal in restaurants. Sometimes, even careful questioning of waitstaff is not enough. I also get them if I don’t eat enough liver. Four ounces uncooked/week is not quite enough for me. I also need 2–4 oz. chicken liver or canker sores threaten. If I eat wheat and feel a canker sore coming on, chicken liver can make it go away. I try to keep beef/lamb liver at only 4 oz./week to avoid ODing on copper.

  24. Hi. I thank you SO much for sharing your ordeal for so many years. He says “tiny pinch zinc acetate (about 1/32 teaspoon) plus mixed 1/4 teaspoon of xylitol dissolved in 1/4 glass of water, slow slip, 5 minutes apart. This one works better, for me on the strep as I suspect the strep I got, were somewhat resistant to certain strains of streptococcus. There is supporting evidence on xylitol and zinc as I attached below.”http://www.earthclinic.com/CURES/strep_throat_questions.html Take care ~Beth

  25. Food Is More Than Fuel | Eat, Pray, Lift - pingback on September 18, 2014 at 12:02 am
  26. my 20 year old daudgter’s immunologist is diagnosing as many as 16 cases a week. Yes it stands for pediatric but does effect adults. My daughter has a compromised immune system I believe since she had all her childhood vaccinations. After age 5 we obtained a waiver and only get what she needs which has been 1. They have brondened the Pandas community to include viruse . Now the syndrome is PANS. pediactric autoimmune neurological syndrome. It is October 2014 and November will be 1 year since my daughters first episode. Her autoimmune trigger..herpes viruses.ie; fever blisters, chicken pox (varicella) and roseola(HHV6 . Her dad is the trigger . He has fever blisters to control they both take 1000 mg valtrex 2 x a day. Good luck. This is more common than you think. Note she has never had a fever blister but her antibodies are Very high to HSV1. She is fighting it and in the fight the antibodies turn and attack the basal ganglia of the brain creating the ocd and in my daughters case, psychosis now. she was in a psychiatric hospital for 20 days

  27. Allison, I’m just curious, how much starch do you eat? People who have been reading about endotoxemia know a thing or two about gut critters causing all sorts of mental issues. I’m curious if you would be willing to give diet a try. Nope, I’m not talking “holly paleo”, I’m talking, orange juice, fruit juice (tropical fruits, starchy would be less preferably of course, like underipe apples) Milk, if tolerated, cottage cheese without added starches. Generally speaking, things that digest pretty quickly, not living enough food for oportunistic bacteria. So, I’m curious, how many potatoes or sweet potatoes do you eat (do you crave them around a specific time of the month?)

    • Hi Ferns; are you saying don’t eat sweet potatoes/ potatoes re strep? Have just cut back a little as sweet potatoes also contain a decent amount of copper – not as high as other things. Thanks

  28. *leaving (oops)

  29. Hey mate…GAPS diet!! Check it out!

  30. I had similar symptoms like you. I found that holy basil helps a lot and it has also anti fungal properties. I am taking probiotics with lactoferrin as well. Lactoferrin is important because it bonds the iron the bad bacteria and fungi thrive upon:)

  31. WOW this is so similar to my story. All started 5 years ago I went from a happy 23 year old male and turned into a nervous wreck. planes, trains, traffic jams, any tight space, crowded space you name it would set me off into a panic. I was fighting addiction from the age of 19 and Im 100% sure now I was using that to keep anxiety at bay as best as I could 4 years of managing those symptoms and not living a particularly enjoyable free like when I could no longer cope.

    One morning I had a complete nervous and my life has been a living hell ever since. Unbearable anxiety 24/7, brutal panic attacks, absolutely crippling PURE O OCD, insomnia, shaking you name it, lost my girlfriend, friends the lot.

    I was told over and over its in your head you need sectioning but I am pretty clued up with nutrition and started researching all day everyday whenever I could. Long story short I managed to put a connection into the gut brain axis and knowing that my mum and crohns and bowel cancer plus psoriasis and my nan the same,and I also have a very unstable bi-polar father something started to click. I suffered from awful GERD too.

    I went ahead and got a stool test which showed no lactobacillus growth, low bifido growth, super high strep bacteria and other pathogenic bacteria, very low PH, hardly any pancreatic elastase production, and parasites 😯 😯 😯

    I got straight onto the berberine and grapeseed extract along with probiotics, a paleo diet and some lifestyle changes but it only helped a tiny bit, hardly at all really.

    I am now on the GAPS diet and 4 days in I “think” there has been a slight improvement and i’m thinking a little clearer with reduced anxiety. I’m a bit frightened to say i’m getting better because the illness really does hurt you mentally and its a miracle i never took a jump off the nearest bridge to date because iv’e been so tempted.

    Anyway im staying positive as Im also on a cleanse from all natural cleanse to help wipe any parasites and candida. Im a bit concerned about my psychological recovery because my OCD has been absolutely punishingly brutal

    If anyone wants to give me any tips, comments or look at my stool tests for advice i would be greatful

    • Louis have you tried inositol and supplementing b vitamins?

    • I feel for you and anyone suffering from this terrible disorder. I have brutal pure O OCD and after spending boatloads of money on various remedies, I have had tremendous success with essential oils. Email me if you want to chat. Amber Pesce @ Yahoo . Com (no spaces of course)

    • hi louis, where are you based? I’d be interested to hear how you’re getting on and whether you continued to have success using the gaps protocol..?

  32. Oh, and by the way, I think all of this could also be related to electromagnetic disturbances, there are a lot of people going through the same symptoms.

  33. Dear Allison, thank you so much for sharing you story and having this thread. Thank you others for posting and sharing also; and please keep it up. It’s so good not to feel alone. You are now doubt helping many. Thank you also Dr Kelly Brogan for commenting, I must get some oregano oil (or capsule form for my son also). It appears a little high in copper; however I guess you don’t take very much at a time? Approximately what dose if anyone knows? I listened to you and many others on the Anxiety summit. as it’s soo very difficult going through all this; when trying to find needles in a haystack; and spending thousands of $ to try get help. We had to pretty much give our business away this year; as I could not deal with all the stress. I only wish more research and how to fix bad bacteria issues and other things come up soon!! My son and I are experiencing severe problems in this area. We were tested by bioscreen in Oct 13 also; high strep and me; ecoli. Kids had parasites, which were treated with strong antibiotic. Took time to recover; however was worth it – my oldest son- 13 has excelled after a yr; was awful when he couldn’t get out of bed or think straight. My youngest age 9 has high copper – which he has started detoxing for 2 weeks ago. Not fun at all! He also appears to have sulphur issues. Dr said he may go a little crazy for a few days (more than normal mood swings / anxiety when dealing with that.. I think idea is to give more sulphur? Oh; years ago he was diagnosed with OBD Oppositional behaviour disorder/ anxiety. So glad didn’t go down the unfortunate main stream route; as no doubt he would have been put on some horrible pharma drug! Even though going on gaps (yeh, the stress getting kids to do that!) for approx 10 mnths (it helped) 1 yr 2 rounds of emycin; I think the strep has come back in a vengance as he also had high inflammation marker a few weeks ago and just kept getting virus after virus – I think that is ESR marker (sorry if incorrect). Bio dr has put him on supps to reduce copper. Dr said this is first thing to treat now. Selenium, Vit C, Primer with zinc, Interfase, creon (stomach enzymes) bi carb prob. for the bacteria/inflammation; I also give/have some tumeric. However there are so many foods containing high copper; it’s a mine field. (and depends which nutrition value list you read) I suggest watching organ meat, oysters etc! My son has/is missing months of school. 🙁 My gut feeling (excuse the pun) is to go back on emycin and also try natural approaches. Do you think emycin effects the liver much however? My joints hurt a real lot. (back especially and joints are degraded for my age 46) Yes will get some stocks going again; oh and I am hyper mobile. I suspect we have mthr gene also. Oh and my mum has had severe mental illness most of her life – Bi-polar, delusions, paranoia etc. My brother was addicted to drugs; Schizophrenia. He died last year – emphysema. I suspect too much oxy contin made things a lot worse for him. Dr put me on primer with meth; I have just read niacin helps side effects. I have also ordered some potassium – it is depleted from out soil. I also have pyrolura and quite sure my son does too. We have been on zinc, mag, p5p etc since 2013. (me with meth). We do gluten free now; I just can’t do gaps fully due to time, losing too much weight and high histamines. Do what I can. Oh; and I have SVT; had heart ablation last year. It comes back for only 2 mins instead of 1.5hrs over 200bpm. now. (Trigger- msg which is hidden; especially when the packet sais no added msg. So have been having no processed foods for a long time now; even gluatamic acid – I was so sensitive couldn’t even eat tomatoes and some enzymes in cheese.) Maybe low potassium didn’t help. Right now my 9yr son is having a hard time detoxing copper. Headaches, nausea, stiffness, he said his heart was sore yesterday; I suspect it was his liver. I just hope his body is allowing him to detox the copper. I bought some milk thistle yesterday. Please keep posting with more ideas and how you are doing; I so appreciate it. I just wish there is an easy way to get strep under control! I will take up some suggestions here and thank you once again Allison. Continued sharing is wonderful and so helps us learn. Can you please advise what does of – lactoferrin or colostrum
    – xylitol
    – grapefruit seed extract you take? PS I think NAC helps with OCD. It also helped my friend stop gambling and can help with some addictions. (it also contains sulphur I believe)

  34. If you can’t eat a lot of sugar (including some fruit) and strep craves carbs also? What do you eat for carbs? Thanks for ideas

  35. Have you heard of a condition called “Pyroluria?” The very low levels of B6 and Zinc stood out in your story and are the main symptoms.

  36. Hi Allison,

    I have just discovered that I am going through this!!

    I have emailed you, did you get it? (email is newplacetostay so you can search for that)

    Thanks,

    Nick

  37. Ebook Program Diet Ocd – tips menghilangkan perut buncit - pingback on March 7, 2016 at 11:42 pm
  38. Hey guys,
    I don’t have PANDAS, but I was diagnosed with Chron’s and prescribed to take drugs lifelong.
    SCD diet (Specific Carbohydrate Diet) showed improvement with 6 months, and a year later I was off the drugs. I starved the bad gut bacteria off the carbs (from grains) and sugars; and stuffed myself with home-made yogurt.
    Thanks for sharing your experiences.
    About

  39. Hi I was wondering if Allison is still online somewhere? a blog maybe? She obviously no longer answer this post but her journey was very interesting and it would be interesting to know how is she doing now especially after the transplant? Was she able to beat this once and for all?

  40. Hi from me too! I was impressed about the story. It’s the same as mine. I even cried when I read it.

  41. Hi Paul,
    I am in Melbourne and was wondering if you can tell me the doctor you referred to as one that neurofeedback practitioner as I would be very interested as copper zinc balance is a big problem. Most appreciate you help , thanks, mia

  42. Nature,s Plus has a product that contains parsley seed oil with garlic. Parsley oil is supposed to clear infections. Just my 2 cents .Always let your doctor know if you plan to try herbals. Hope all of you find relief from this malady.

  43. Allison thank you for sharing your story.
    I have a family member who’se history is so similar to yours complete with glandular fever, chronic fatigue and anxiety. I live in Sydney and am interested in finding her a sympathetic and knowledgeable GP who may be able to help her get the tests and treatment she needs.It has been a few years now and she has gone down the path of anti depressants with some success but still suffers viral/anxiety episodes.
    is there any way I could email you also for further information?
    Also I would really like to know if you went through with the faecal transplant and if you felt some benefit from it as it seems like a logical answer to repopulating a damaged microbiome.
    Thanks again.

  44. Thank you to Allison for sharing her story! I felt like I was reading my own story in many ways.

    I’m 33 and have suffered with panic attacks, food intolerance, chemical sensitivities, sound sensitivities, intrusive thoughts ocd and hypoglycemia over the last 3 years, and rosacea, pcos, and cold hands and feet since I was young.

    I feel like there must be something pretty wrong with my gut, and am very curious about fecal transplants. Has anyone tried this and had luck for these types of symptoms?

    No one in my family has issues like me, and it seems like a lot of the issues started at very stressful periods in my life.

    I’m thinking of doing the fmt ASAP if anyone can provide any feedback. Thanks all! Best of luck to you!

  45. I have tried a gut cleanse, and supplements but my severe ocd is still killing me. what can I do?
    I have disabling OCD/tics; cbt does not work and medication caused tinnitus and hyperacusis so am unable to return to that route.
    I am getting worse and my life is a living hell. I have other issues, immune related: chronic fatigue, psoriasis and the athritis, athsma, allergies, believe I have fibromyalgia and M.E though awaiting diagnoses.
    I am fighting suicidal depression because of how hard my life is; it is a real battle and there is no hope for me.

    I learned about leaky gut/brain and realised this could be why all these supplements have no helped. I am clearly not absorbing them. I want to detox the gut and brain, heal the leakage and infuse with the nutrition it needs to balance my brain. I am very poor, on benefits and live in Manchester Uk. I am willing to partake in studies, tests or any trials that may be going but nowhere seems to be taking anyone on at this time. I have asked all over and getting nowhere. Can you suggest anything please? I can’t bear this anymore, and don’t know how long I can hold on. I am incredibly strong but have reached my limit to what I can stand. I am reaching out to anyone, anywhere for help.

    Best Regards

    Miss Armstrong

    • Hi Ursula, and others,

      I have suffered from OCD for years. After much searching, the view I am coming to is that depressive and intrusive thoughts insisting that you perform compulsions actually are intrusive. That is, they may not be coming from you but coming from malicious spirits. (Obviously this is a controversial view, although it was widespread in Catholicism until the 60s and 70s ) Although at first such a view might seem frightening and dark, I find it to be helpful and liberating. Those negative thoughts about yourself are not true; they are propaganda attacking you. The videos “How to deal with evil spirits – Swedenborg and Life” or “Where thoughts come from – Swedenborg and Life” by the Swedenborg Foundation are fascinating, as are several others on the same site. The presenter has himself suffered from OCD in the past.

      From a more scientific/mainstream point of view, the book “The Man Who Couldn’t Stop” by David Adam is helpful both scientifically and in showing how you are not alone.

      • Hi again Ursula et al, just thought I should add a couple of positive points to what I said earlier. In the Catholic tradition and in Swedenborg you are also being influenced by, and can pray to, good spirits including your guardian angel or angels. I was also surprised to find that, in Catholic tradition, oppression by evil spirits tends to happen to the more virtuous people, including saints.
        Lastly the Swedenborg videos’ presenter discusses his technique in “How to Stop Unwanted Thoughts — Spiritual Toolkit” (6 min)

        Finally, Paul J, I am forever grateful to you. My wife gave up wheat when I told her your advice and her decade long IBS, causing problems and worry whenever we went out, disappeared in about 3 weeks. We have told many others but people are surprisingly reluctant to believe wheat could be a problem. However a few listened and have had a similar experience. One elderly man told her he had got his life back. So, if you sit still and quiet, you should be able to feel huge thanks and huge respect flowing over to you from the UK.

    • Hi Ursula

      In case your issues are caused by a bacterial/viral infection(s), it may be worth trying a ketogenic diet, as Paul recommends for people with neurological disorders.

      If you notice improvements, a brain infection is a possibility. Do you own a copy of Paul’s book? If reading for a long time’s a struggle, just Google “ketogenic diet paul jaminet” instead to read one of his articles on ketosis.

      Wishing you a full recovery,
      H

  46. Im sorry im too stressed to read the whole story. I have disabling, severe ocd and also many chronic health issues and want to try this gut methylation diet but there is no help I can find out there. Certainly cannot afford a functional med doctor and the tests… I am desperately poor.
    I have worn myself out searching and still dont know what diet to go on. Im vegetarian too. Driving me insane and getting nowhere…

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