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High b12, neurological symptoms, digestive issues - what's going on?

Answered on March 21, 2017
Created October 08, 2013 at 1:20 PM

So, I've been a lurker for a while, and going through some health issues for the past couple years without really knowing what to do about it. I haven't eaten any gluten grains in two years. I did eat some grains and legumes this past summer, as I was living at a vegetarian yoga centre. Aside from that, I stay away from them. I eat primarily fish/shellfish and vegetables, with occasional sugar-free nitrite free medicine free bacon, grass-fed lamb and beef, and skinless non-medicated chicken. I eat all organic. Before I became ill, I was an organic farmer and permaculture designer - I am very anal about what goes into my mouth and my body. One of the couple neuroses I've developed over the past couple years.

Brief history: SAD for formative years, anxiety/social issues, ended up gaining a lot of weight and topping at 320lbs at 5ft 4inches (male). Changed life, became a monk, also vegetarian, lost 100lbs. Became vegan, for 5 years. Total weight lost 155lbs. Paleo/parasite/screwed health - 160-165lbs lost. Hernia operation. Much antibiotic use throughout my early life, and some recently. Definitely have neuroses around food - been through the gauntlet of anorexia, bulimia, orthorexia.

Anyways - a breakdown - a couple months ago I was diagnosed with blastocystis hominis in response to complaints I had of weakness, fatigue, loss of equillibrium, depression, anxiety, sensitivity to light/noises, brain fog/inability to maintain focus, general malaise. At the time, by B12 levels read at 410, and creatinine were a bit low as well. My doctor said everything was normal. I pushed, and eventually found the parasite.

I was treated with flagyl, the holy trinity of herbs (walnut, cloves, wormwood), diatomaceous earth, and colonic irrigation (because honestly, I want to feel better and wanted them GONE). Recent test showed up no presence of B. hominis. I've been getting colonic irrigation done for the past 4 weeks, and today is my last scheduled day. I'm going to stop because I've just been feeling worse and worse.

I had a period of time where I was doing OK neurologically - suffering from headaches every day, but I was actually able to go to the gym and climb stairs. Then I started to get light-headed and strange-feeling again. Ability to focus went down the drain. Moving at all feels like lifting a mountain, sometimes. I feel tired all of the time, yet can never sleep for more than 4 hours at a time - whether I'm low-carbing it or medium-carbing it.

I went back to see my doctor. He said parasites were gone, go away, nothing wrong with you! I had to argue with the guy to continue testing me. He tried to send me to a psychologist/psychiatrist for stress/anxiety. These problems presented post-digestive issues (which are still present and include either diarrhea or constipation, no pain really unless I get very constipated, but bloating accompanies) and seem neurological to me in nature, not psychological. These problems don't just come from nowhere. I meditate (I used to be a buddhist monk, actually) and practice anxiety-management techniques, take peaceful walks, yet I seem to have absolutely no control or moderating ability over it.

My most recent test shows all normal results except for B12 and creatinine, which out of range on the low side again. In March, my b12 read 410 (after 5 years of being vegan). Now, after more than half a year of paleo, for the most part, my B12 reads at 1633, well beyond the normal levels. AST and ALT read in the normal ranges, though in March my AST (I believe) was at the high end of normal, just on the cusp.

The guy who was doing my colonics has told me that there is virtually no peristaltic action in my colon, even after 4-6 weeks of treatment. I am usually constipated, unless I take a bit of magnesium, which causes it to suddenly become more like diarrhea.

I don't really know where to go with this. My doctor, I expect, will smile and nod and tell me to go home and de-stress "you silly hypochondriac". Meanwhile, I'm rather scared. I don't expect anybody here to have any answers for me, but was wondering if anyone has any experiences that might relate and spread some light on what direction I should go. I have a feeling a may need a new doctor. I have consistently had to tell him what to do in order to find things that were happening with me, for the past 5 years - if it were up to him, he'd send me away with high fiber, de-stress, do some yoga, and here's a lolly-pop kiddo.

So. Any relevant info would be much appreciated. Thank you.

Medium avatar

(238)

on October 08, 2013
at 03:15 PM

Hard to respond, could you trim down this post, maybe in list form of symptoms. Hard to follow, may need more coffee on my end.

4426b9b77d6cc822cbb9525d10e20e5e

(20)

on October 08, 2013
at 01:24 PM

Also, I have not been nor am I supplementing B12.

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10 Answers

0
E50a631c0188121df02573d5f70cd6a6

on March 21, 2017
at 11:55 PM

Flagyl and herbs will not eradicate Blasto. The best test is a PCR test from DRG Labs. Dr. Apelles Econs in London will treat people via Skype. The most successful treatment to date is a triple antibiotic therapy offered by the CDD in Australia.

This is a protozoa whose pathogenicity is disputed and whose influence in human illness has been breathtakingly neglected. It could be that it is mutating into more pathogenic forms in the presence of glyphosate. Hopefully more research will be done in the future so we can get to the root cause of such illnesses as autoimmune disease, mold sickness, myalgic encephalomyelitis (ME/CFS), neurodegenerative disease, food allergies, depression and anxiety disorders, and cancer.

Good luck to you, my friend!

-- Alethea

0
E95e9ee5022bd736fcc1bf2130530ac2

on September 11, 2015
at 04:41 PM

Your story reminds me very much of how I felt last fall. Thank goodness I haven't had as many symptoms as you. Kudos to you for taking control of your diet, mental/spiritual health, and lifestyle. Ditch your doctor. My doctors were nice enough to admit that they didn't know what was wrong with me or how to fix it, and referred me to lots of specialists. The 5th referal finally paid off - the allergist. In addition, I get care from a great accupunturist, masseuse, chiropractor, and therapist. If your doctor doesn't treat you with respect, they are useless. I would be careful about invasive techniques like colonics. With gut problems you have 2 patients: yourself, and your microbiom. Both need treatment. I think of my gut bacteria like a farm - it needs energy, water, selective weeding (not round-up), selective fertilizing, etc. When it's out of whack, I put up with some discomfort and focus of fixing the root of the problem with probiotics, specific foods (some bacteria like me to eat different foods than others), rest, sunlight, exercise. Your microbiom relies of your muscles to move food past them, like anemones rely on the tide to move seawater thru their tentacles.

0
8fd40eee29290a6a26240a2440f0f9d8

on September 07, 2015
at 09:56 PM

I also cannot add how much being gluten free helped me, since 2004.  I had a lot of issues crop up around 2004 and I went gluten free after being diagnosed with some candida and gluten intollerance, and within a few months to a year, after quitting all gluten, and taking some anti-candida capsules via my homeopath, i felt like a new person.  I mostly attribute it to removing the gluten.  My immune system was haywire from the gluten and I had lots of inflammation.  I suspect that the Blastocystis infection will mess with your immune system for a while (as Jackie Delaney notes on her bad bugs website), in the similar fasion of gluten (for me), and it can affect mood (hormones) and your thyroid hormones. That is why I am interested in the AHCC for protecting the immune system and modulating inflammatory response.

0
8fd40eee29290a6a26240a2440f0f9d8

on September 07, 2015
at 09:35 PM

By the way, I take SAMe for mood, and it helps.  I suggest you take 400mg/day.  I get mine from iHerb in the 60 caps bottle by NOW foods.  Also, Ashwagandha by AOR helps for stress as well... been taking that for several years with the SAMe.  I can't tell when I got infected but this definitely helped me stave off serious depression/anxiety since 2007.

0
8fd40eee29290a6a26240a2440f0f9d8

on September 07, 2015
at 08:11 PM

Also, I recommend you STOP the colonic irrigation.  I suspect my problems came about after it was suggested I do coffee enemas by some quack "doctor" Lawrence Wilson (USA based quack) and his minion Josephine Zanetti working out of her site, Natural Health Protocol in Vancouver BC.  This fucked up my entire digestive colon.  I can't tell if I was infected with Blastocystis before I did the enemas and it made the infection worse, or what happened.  But I would strongly recommend against doing anything invasive like that.  It can wreck your gut lining.

0
8fd40eee29290a6a26240a2440f0f9d8

on September 07, 2015
at 08:04 PM

Have you checked your thyroid?  I was just diagnosed with hyperthyroidism at the same time as being positive for blastocystis H.  One of my first blood tests came back with low creatinine as well.  I assumed this was due to the hyperthyroid malfunction, as they usually go hand in hand.  I also read that Blastocystis or any parasite can cause thyroid problems, which can lead to the low creatinine...so its all weirdly connected.  I just finished a course of 10 day 3xday flagyl.  I cannot say if it worked.  I still need to go back for a retest which I will do shortly, and I am getting my cat tested as well.  I am presently taking Douglas Labs Anit MFP (mold fungus parasite).  Its strong on my stomach and I don't feel great.  Also taking saccharomyces boulardii (by AOR) and bacillus coagulans by thorne, along with L-Glutamine for gut healing.  As well as IAG powder by Biotics - it is larch powder and supposed to help immunity, similar to what AHCC does, the mushroom immunity pills for cancer patients.  I also bought that but not taking it yet.  I know what you mean about the depression. I also have the joint pain in my lower back, hips and legs area.   Its probably the worst part.  Along with the bloating and distention of the gut.  

On the positive end, its good to hear you killed off the Blastocystis with the stuff you used.  

 

0
783dcb3c7dce365d3da6027513f0b054

on April 02, 2014
at 08:00 AM

Just joined paleo hacks this morning. I am very interested in Blastocystis Hominis. I have been diagnosed again with it and assume that it has been there all the time even though I tested negative. I have been ill now for 16 years. I would probably have a similar set of problems but I take support for adrenals and nervous system, amino acids, vitamins and minerals, oil, magnesium etc. I intend to do a 3 x anti biotic over one month. Extremely strong stuff. Having read lots of info on the internet it seems very difficult not to get infected again. The big problem afterwards, is that there will be a big gap in my system where all the bacteria, good and bad, will be killed. Therefore a space is left vacant to be inhabited and unless I get mountains of good bacteria in there very quickly the bad bacteria will take over again and I will be back where I started. Hope you have recovered.

0
2a6025992746ff6cd4ffb6ccf0aa03fc

on October 09, 2013
at 04:57 AM

I would warn against excessive detox/cleansing activities. This aggressive approach is not going to do your digestive system any favours in the long term. You need to restore proper gut function in a gentle way. As well as getting rid of the bad stuff in your gut, you may have wiped out the good stuff. So you need to eat a nutritious, easy to digest diet which is providing enough nutrients, and then start adding fermented foods in moderate quantities or maybe probiotics.

Start off with a simple diet based on bone in meat, organ meats like liver, fish bone broth, cooked vegetables and coconut oil. Bone broth and coconut oil are digestive super foods, eat them every day. Remove common allergens and irritants like eggs, dairy and nightshades. You can google GAPs diet for quite a strict protocol. Also try eliminating FODMAPs as they can cause bloating and other digestive problems. This is temporary, eventually you should be able to eat a wider diet. But for now stick with easy to digest foods and avoid too much raw, including lot of fruit in one sitting. You may even find fruit needs to be 2-3 times a week rather than every day.

Make sure you are getting enough vitamin A, D, K2 and magnesium. Ideally get this from your diet and sunshine. Otherwise, wise supplementation is good. Liver once or twice a week should be fine for A, but many people find D and magnesium supplementation necessary. Omega 3 can also help - ideally from oily fish 2-3 times a week.

Get 8 hours sleep minimum every night in a pitch black room. Meditate, do yoga and breathing exercises. Remove stress as much as possible. Walk for at least 30 minutes everyday and avoid excessive periods of sitting around - break it up with house chores, moving around and other low level activity. Healing the gut takes time, but it is possible.

0
Medium avatar

(238)

on October 08, 2013
at 04:31 PM

Unless you feel like you are at deaths door, I'd stay away from doctors for the moment.

I was vegan for 7 years and never felt great although my weight was in a good range, flabby but low. Interestingly my WBC dropped low during that time and has never recovered, my doctor said some people just have low WBC, no big deal. He couldn't explain why it dropped. I had brain fog, light headedness, etc. as well as constant sinus infections. It has all got much better in the past two years for me.

If it was me I'd start by trying different foods being added back to the diet. Go a week eating potatoes every day. Next week try something else. Also run a few days of your eating through a food tracker to see what nutrients you are getting and what you are missing. Are you getting sun? If not Vitamin D supplements.

That's all I got.

0
4426b9b77d6cc822cbb9525d10e20e5e

on October 08, 2013
at 03:28 PM

Since it was rightly requested - I can get rambly.

High b12 - 1633 (was 410 in March, and I haven't supplemented)

Low WBC 3.2

Low Neutrophils 1.4

Low creatinine 55

Gastrointestinal: Lack of peristalsis, constipation-dominant, bloating.

Neurological: Brain fog, lack of focus, depression, anxiety, developing neuroses, malaise

Fatigue, weakness, light-headedness or loss of equilibrium.

Sensitivity to light, noise.

Diet: low-med carb paleo, all organic/grass fed/wild. Avoiding all common allergens - essentially autoimmune protocol.

History: Parasite (b. hominis, recent test shows no presence), weight loss (165lbs total), depression, vegan 5 years.

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