3 years to life…

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  • #112629

    cburke007
    Member
    Topics: 1
    Replies: 4

    Hi everyone,

    I just registered with the site, though I have been a lurker here and on curezone and various other sites for the last couple of years. Here is my story, sorry but it is a long one…

    I believe I have suffered from an impaired gut ecology and auto-immunity since a very young age. I suspect it could be somewhat hereditary as well since diabetes, heart disease and death at a young age run in my father’s side of the family. My maternal grandfather had intestinal cancer that resulted in the removal of most of his intestines and a colostomy bag.

    As a small child I had constant ear infections with swollen lymph which eventually led to removal of my tonsils at around age 5. Later around age 11 I contracted Hepatitis, but they couldn’t tell what strain it was (this was in the mid-80’s), but based on the severity and extreme jaundice I had it seems to best match Hep-A. I have tested a few times for Hep-C and have never shown any anti-bodies for it thankfully.

    Shortly after my run-in with Hep, I started developing eczema on my face around the eyebrows and nose. At first I was able to get by with lotions, but eventually it got inflamed enough we sought a dermatologist. They unfortunately believed then, and still do, that eczema is a topical infection, and their prescription was steroidal cortisone cream. I used their prescription stuff, but when it ran out and the eczema was still there I went to OTC hydrocortisone cream, which I continued to use on my face for roughly 20 years. I finally weaned my self off of it slowly about 4 years ago and started using a more natural non-steroidal cream.

    In 2006, I came down with a cough that just would not go away. I was eating so many hall’s that I was making my self nauseous, and could not control the cough. I went to my GP and he prescribed a Z-pack. 2 days into the Z-pack I started developing tingling in my toes. it started working its way up my legs to the point that I knew I needed to go back to my GP and find out what was going on. By the time I was going for the MRI, my left eye would no longer move left and the numbness was up to my waist. The MRI showed that I had immune system activity and inflammation in my cortex and spine. The “soft” diagnosis was MS and the initial treatment was a very strong steroid. Over the 6 weeks I took the steroid the numbness (and by then muscle weakness) quit advancing and by week 4 started receding. During the treatment I found lots of info about mercury fillings and their potential to cause issues like this. Once the treatment was over and the symptoms gone, I had 11 fillings replaced with non-metal fillings. Thankfully the symptoms have not returned, despite my doctors’ insistence that I needed a spinal tap and probably lifelong treatment for MS. That was 7 years ago.

    3 years ago in late 2010, I had a tooth infection which I decided to get a root canal (That may or may not have been a good idea). I had one previous to this, and I have had another since, right next to the second one. During the round of Amoxicillin for the root canal in late 2010, I developed clay colored stools, lightheadedness, feelings of low blood sugar, scary stuff. I contacted my dentist and he recommended I start taking a probiotic so I did. I did some research and ended up starting on a 15bil CFU multi-strain probiotic. Within 2 days I was feeling better, my skin had completely cleared up on my face and was soft and smooth, something I had not experienced since I was a kid. My hair had also become much softer. It was very strange. However, on the 5th day I started to notice little tingling in my finger tips, but didn’t think too much of it. Each successive day it got worse and I noticed my skin on my arms was becoming less sensitive to touch and immediately started to panic that it was the MS again. I quit taking the probiotic and went to the emergency room. They ran lots of tests, but couldn’t find anything so just ended up recommending going back to my GP.

    Naturally my GP scolded me for no following up on my follow-up MS testing and sent me back for another MRI. Come to find out I was clean in that respect. He also sent me to a neurologist and Gastro doc due to the clay color stool and diarrhea which he informed me were indicative of serious liver inflammation, and possible gut bacterial infection.

    Got nothing from any of the neurologist testing/bloodwork. The gastro doc did more bloodwork given that I have a history of elevated liver enzymes and bilirubin that my GP never thought worthy of diagnosing. He also sent me to get an abdominal sonogram to check out my liver. There we found that I did have some minor fstty infiltration of the liver. This was most likely due to my being overweight and alcohol usage history. Other than that he had nothing to go on to explain the neurological symptoms I was having and even suggested that it might be all in my head and to speak with my GP about that.

    At that point I was out thousands of dollars, had no outcomes other than what can only be construed as ridicule and belittling, especially when I mentioned the possibility to my GP of my symptoms being related to a potential yeast overgrowth and the resultant die-off being caused by the probiotic. It was at this point I sought out a naturopathic MD, but I had to wait a month and a half to get in to see him.

    During this time I continued to research and experiment. I had quit using the probiotic, and after several days I started developing bad rashes in underarms and most unmentionable cracks in the body. When I started taking the probiotics again the rashes would slowly dissipate. However, I found that continuing to try the 15bil CFU probiotic would, after just 3 days, start to give me very strong side effects of skin numbing, my complexion got pale, and I would feel drunk. This lead me to stop taking them and start finding some much lower dose.

    Around February of 2012, I started taking a homeopathic sulphur remedy that my naturopathic doctor had prescribed, and I had stopped taking probiotics and any anti-fungals for a 2 week period so I could get tested for Candida (which came back at only +1, almost non-existent). However, after the first dose of the Sulphur remedy, 6 hours later I started feeling very flush and my skin became splotchy. Within a day I had full blown urticaria over most of my body. I looked like I had a bad sunburn (and felt like it). It itched like mad and was very scary. This continued for about 4 weeks. I was scared to try any more probiotics or antifungals because we could not determine a root cause and I wrongly thought it might be the good guys. Finally at 4 weeks I decided to experiment with L-glutamine because I had read that urticaria can be caused by leaky gut. I also started on a 1bil probiotic pearl. The next morning my redness had immediately started calming and my skin started to dry and flake. Within a couple of days most of the urticaria had gone leaving behind some specific patches that finally healed over the course of many months. Unfortunately I found that I cannot tolerate L-Glutamine. After just a couple of days of 1g doses I develop bad headaches, inability to think clearly, fatigue. So when I take glutamine it is in smaller doses and infrequent. I haven’t taken any in a while.

    It was at this time that I had discovered that I had overnight become intolerant of the vast majority of foods. I could no longer eat gluten, dairy (casein), yeast (incl. Kefir and S.Boulardii), honey (pollens), as these all exacerbated my urticaria symptoms and added heart palps, elevated BP, panic attacks, etc. I had already cut out fruits and sugars due to extreme bloating, numbness and brain fog symptoms whenever I would consume any sugar or starchy veg. That was in Mar 2011. It took me about 2 weeks to get over the low blood sugar issues associated with cutting sugar out of my diet and converting to fat as a fuel. I lost about 30 pounds in about a month and a half once I was forced into an elimination diet. It was bad enough that I, and many around me, were wondering if I had come down with some sort of cancer.

    So fast forward to Sept 2012. By this time, I had slowly worked up to 4bil CFU probiotic and a product designed to consume candida, called Candisol. After a month on the Candisol, and not seeing significant improvement (yeah, I should have given it longer), I decided to test the theory that maybe I had given myself SIBO when I first started taking the probiotics and had been nursing it ever since. I decided to stop the probiotics and Candisol. After a few days I felt much better. No more die-off symptoms, the rashes had already cleared up during the probiotics and Candisol treatment the month of September, and they weren’t coming back. It seemed like maybe I was OK.

    Then we had a company get together with some of our customers. I wound up drinking some wine and eating some desserts which included gluten and of course sugar. I was out of work the next 2 days and all of my symptoms were back with a vengeance.

    I started to lose weight again, except this time it coincided with hyperthyroid symptoms. Blood tests showed my T levels were out of whack along with constant hunger, cold sweats, jitteriness, light-headedness. It felt like low blood sugar issues again, but that wasn’t it. My tri-glycerides were also elevated (which was one of the things that had always been good for me), and my liver enzymes, which had been back in the normal range on my previous blood work, was elevated again.

    During this time I spent the money on another round of tests, which included the leaky gut challenge (negative), the DMPS heavy metals challenge (negative for high metals), and the Metametrix GI Effects analysis (High Prevotella bacteriodes, low Lacto, VERY low Bifido, but no pathogenic bacteria/parasites/yeast found).

    I have spent the last 12 months trying to get back to where I was last September and I think I am finally there. Earlier this year I fermented some sauerkraut and started with 1/4tsp of juice which gave me bad die-off, and slowly increased from there and grew into sub-dividing my Bio-Kult probiotic capsules into 250mil doses. It looked like I was cutting up lines of coke on my mirror, lol.

    I am back on 4 bil every day now. I have been trying to add back different antifungals with very little success (success being I can still function at work). I work in a high output job for a large hosting company, and the vast majority of my work is mental. If you google my forum name you can probably suss out what I do. Die-off, and having a strong percentage of my mental processes focusing on weird sensations, dizzyness, itching or twinges of pain that continually crop up, make my job extremely difficult. I also frequently have congestion in my ear that results in weaping of a yellow-ish fluid that results in inflammation of the inner ear and scaling and peeling of the skin in my ear. This is usually coincident with sore/swollen lymph nodes directly under my ears.

    Some of the anti-fungals I have tried in the past:
    – Grapefruit Seed Extract – Massive skin numbness, tight back and shoulder muscles, heart palps, throat muscles sometimes feeling tight.
    – Olive leaf extract – lightheadedness within 10 minutes of drinking a dose mixed with water, numbeness, tight back and shoulder muscles, heart palps
    – Candisol (have also tried Candidase and Candex with the same reaction) – More gentle action, but generally results in MORE stronger food intolerances that I wasn’t having problems with before. Also leaves me feeling as if I have eaten yeast products, see text above for what that does to me. My suspicion is that it is dead yeast left over after the cellulase is consumed that is being absorbed back into my system which then produces the same effect as if I had eaten the yeast.
    – Cocount oil. I use this every day in cooking. I used to eat it by the spoon before cooking with it. When I first started taking it I had the same numbness and muscle issues as other anti-fungals
    – Candigone – This one was very mild. Very minor effects the first couple of days, nothing after that. I did a couple of rounds of this stuff and given the ingredients I expected to be knocked on my ass. It may work, but I can;t say it did anything for me.
    – Paragone – same thing as Candigone
    – Caprylic acid tablets – very bad brain fog, numbness, heart palps, muscle stiffness
    – Nystatin – I got my naturopath to prescribe this for me last fall. I started with a small dose of 1 tab per day. On day 3 I was at the grocery store and the lights started to get bright and I started noticing I was getting dizzy and having bad heart palps where it was very irregular and skipping. I started thinking I was having a heart attack, but I didn’t have any of the common pain symptoms. I put down everything and went for the exit and went home. I got into an epsom salt bath and used the toilet. I started feeling better, but the symptoms were still pretty strong. I have not taken it again.

    Something I have not mentioned yet is that when my die-off symptoms get really bad, I will have occasional periods where my whole body will start to weaken and go numb and I will start to feel like I am going to pass out. Shortly after I start to feel the urge to go to the bathroom. Once I do that I am always feeling better in about 30 minutes, not tip-top, but no longer panicking. It is VERY scary, but from what I have researched I believe it may be toxic buildup in the colon and as it nears the exit, any remaining toxin filled water is reabsorbed through the hepatic portal vein. No idea if it is true or not, but seems to make logical sense. Going low and slow with my probiotics and anti-fungals seems to keep these episodes at bay.

    I cannot take Psyllium or Apple Pectin as they both give me hives and other allergic reactions. So my ability to expedite the elimination process is impaired. I generally go 2-3 days between. Occasional enemas help to move things along, something I never in a million years would have though I would even try, but desperation often wins those battles.

    I bought an infrared sauna earlier this year (based on McComb’s recommendation) and use it whenever I start feeling toxic, followed up by some electrolytes and an Epsom salt bath. This usually makes me feel a good deal better. Funny thing is when I am feeling particulary die-off toxic, when I get out of the Epsom salt bath I usually have little red dots on the underside of my forearms that itch. My shins also itch pretty bad. They go away within about 30 mins, but I have always taken that as toxins leaving the body. I don’t get them when I am not feeling too bad.

    I have been down the road of GAPS (during the massive urticaria phase and some time after), SCD, Bee Wilder’s site, McComb’s site of which I cannot do the diet due to the food intolerances and inability to eat any of the rice or fruit and I cannot do the Undecylenic acid without the probiotics as the constipation would absolutely destroy me.

    My diet for as long as I care to remember has been meat, eggs, low starch veg (primarily zucchini or cooked to mush green beans), and water. Food has become my enemy. If I didn’t have to eat to survive I would quit today.

    I am currently about to start trying undecylenic acid again. Previously I have tried it and just one cap 2 days in a row leads to debilitating numbness, heart palps, brain fog, and muscle cramping in my back and shoulders. That has been a couple of months and much lower doses of probiotics ago. I am hoping it will go better in a week when I try again. Last year when I was at 4 bil previously I was able to withstand anti-fungals a little better. Hopefully that holds true, but back then I had been at 4bil for longer than I currently am.

    Anyways, sorry for the long diatribe, but I wanted to get it all out there. I look at my whole health history as being related to my current situation. I am keen to figure this thing out and get back to 100%. I consider myself an expert troubleshooter by trade and use self experimentation to poke and prod and find what works. I have been completely cured of any desire for the SAD diet. I have no interest in sugar, bread, alcohol or any other pleasurable food. Maybe someday, but right now they cause nothing but suffering and a shorter, unenjoyable, life.

    Being the sole income for a family of 5 (a wife of 18 years and 3 boys aged 12, 9, and 6) I NEED to find the fix for this so I can enjoy living again. We moved to London for my job in Jan of this year, and this illness has made it incredibly difficult to enjoy our time here exploring and doing things we should be doing in a foreign land full of endless history.

    I wouldn’t wish this on my worst enemy…

    If you made it this far, thanks for reading!

    #112630

    candida_sucks
    Member
    Topics: 3
    Replies: 148

    cburke007;51150 wrote: I believe I have suffered from an impaired gut ecology and auto-immunity since a very young age. I suspect it could be somewhat hereditary as well since diabetes, heart disease and death at a young age run in my father’s side of the family.

    The history of heart disease stands out to me — heart disease can be a risk of high homocysteine levels, which in turn can be associated with genetic defects in your MTHFR enzyme. Defects in MTHFR can cause your methylation cycle to be off. The user ‘impossible’ has been posting a lot about this in recent weeks. Check out some of his posts.

    Cheers,
    CS

    #112632

    raster
    Participant
    Topics: 104
    Replies: 6838

    Well the way I look at it is you have multi-pronged health problems. You don’t have enough beneficial gut flora caused by prior antibiotic use. You likely have a methylation cycle problem which impairs a variety of things within the body. The thyroid is likely impaired slightly and is under-performing.

    The main thing that sticks out to me is that you also very likely have a general toxicity problem. This is why the sauna helps so much, because it helps you detox via the skin, the bodies largest organ. Your elevated liver enzymes indicate that your liver is being stressed and if the toxins remain in the body, then you will feel bad essentially. You never really focused on detoxing the toxins it sounds like to me and this is something you need to focus on in my opinion. Healing the liver affects so many things in the body, its the final organ in the body in the long process of digestion. This is why you develop skin problems because your liver cannot detox properly, and so your body has to detox via the skin or via the lungs.

    You likely have a variety of flora that have overgrown and not just candida. Microbes, parasites, bacteria, strept, etc. You could have flora located in places that it shouldn’t be (like SIBO) and this could cause problems.

    It also sounds like you have a hard time dealing with die-off and that it completely messes you up. This is unfortunate and I would stress that you need to come up with a detox plan to address this. If you can do the sauna every day when you take antifungals, and help address the liver, then you should feel pretty good when compared to your prior experiences. Because of this, you will have a hard time making a dent in the candida and/or other bugs that have overgrown and you won’t make very much progress. I personally went through the same symptoms and in my opinion you just gotta tough it out because its only temporary (typically).

    My suggestions for you would be to heal the liver, go back to your naturopath, consider continuing with the sf722 (undecenoic acid), and try out a human derived strain of probiotic. The most popular human derived probiotic is HMF neuro and you haven’t ever tried this it sounds like. In canada there is another human derived probiotic that contains 6 strains. I think getting the human derived strains is very important in getting better.

    -raster

    #112638

    BethanyAlaska
    Member
    Topics: 1
    Replies: 6

    Absolutely no advice, total novice to this. But I just wanted to say I did read all your post, and you have my admiration. What a terrible time you have had, what a burden on your shoulders. I really hope that some real answers and solutions are close at hand for you. In the mean time, take pride in the fact that you have provided for your family through all this, that takes some real strength of character.

    #112641

    cburke007
    Member
    Topics: 1
    Replies: 4

    CS,

    Thanks for the suggestion around the methylation. I will check out impossible’s posts. I do believe most of my issues are liver detox related.

    Raster,

    I do have a fairly rigid detox regimen. I didn’t add that to my diatribe above, but multiple times a day I take molyb, pantethine, vit c, NAC, Milk thistle, vit D (I tested low), a product called detoxication factors that my naturopath had prescribed me for phase I and II liver detox support. I have also been trying to readd another supplement he prescribed a long time ago called lipotrophic complex which is designed to assist the methylation, but I have been having some strong symptoms in conjunction with taking it and have not been sure if it was the supplement or other things I was doing at the time. Both of the last products are by integrative therapeutics. Now that my last bout of dieoff seems to be dissipating, and I am stable on my probiotic dose, I will try to add it in again a week before I start playing with the undecylenic acid again.

    The detox factors have been key to getting my probiotic doses up. Before I reintroduced them I was stagnating at just 500mil cfu. Once I started them I was able to start moving up in probiotic dose again to where I am now. I also drink decaf green tea and dandelion tea pretty regularly.

    Despite all of the above I still really struggle with die off which is where the sauna and epsom salt come in. I will definitely look further into the methylation stuff and make sure the lipotrophic complex I already have contains what I need to get it going better. I will also look into the human derived probiotics. I currently take Bio kult which is the one recommended on GAPS and it has done ok for me, but I am always up for trying a new one as long as I don’t end up backsliding. That would just destroy me at this point.

    Unfortunately, my Naturopath is in San Antonio. Now that I live in London I have really struggled to find one locally.

    Bethany, thank you for your kind words. I can’t take all the credit. Without my wife cooking my meals and running our house I would be screwed. The toll this illness takes on me brings me home from work just exhausted, and feeling toxic most days. It is hard to have any energy for the rest of the family, which just adds to the feelings of guilt that keep me on the border of depression and feelings of hopelessness. I just take it a day at a time and hope each day that I can get through without having a panic attack in the middle of a meeting, or that I can actually think clearly when working with a client.

    This is some hardcore stuff…

    #112644

    candida_sucks
    Member
    Topics: 3
    Replies: 148

    cburke007;51162 wrote: Unfortunately, my Naturopath is in San Antonio. Now that I live in London I have really struggled to find one locally.

    The Institute for Functional Medicine has a search tool that can locate holistic doctors around the world:

    Functional Medicine Practitioner Search

    These are doctors that will treat people for candidiasis and whatever other problem one might have; they don’t just treat the symptoms like mainstream medicine. I did a search in London and the list is long. It includes Naturopathic doctors, as well as medical doctors.

    Cheers,
    CS

    #112648

    cburke007
    Member
    Topics: 1
    Replies: 4

    Wow, fantastic. That’s exactly what I needed. One question though. I see there are a lot of different specializations. What ones would you target specifically? One of the nutrition specialists on there I saw earlier this year, Antony Haynes, is listed as autoimmune conditions as a specialty, which is partially what I am dealing with even if the source of that autoimmunity is the dysbiosis itself. He did help me identify another possible cofactor in my illness, that I have high antibodies for epstein Barr and one of the herpes simplex viruses, from when I had mono as a teenager. The antibodies themselves don’t really prove that they are reactivated, but it could be a factor.

    The supplement he prescribed for me was humic acid, and took me off of probiotics and antifungals entirely to try to focus on getting the viral thing in check. It only made me feel worse, without the usual balance of feeling some improvement. Mostly it just elevated my blood pressure to a scary point at which time I stopped taking it and went back to treating myself by getting my probiotic dose up again.

    He did seem very good at what he does, but he does not specialize in dysbiosis specifically, so he seemed to struggle with what to do for me regarding the dysbiosis and especially the liver detoxing. There was no real discussion of that.

    I would think maybe the best place to start would be with someone that specializes in the gut, and hope they also understand detoxing and autoimmunity? Or maybe I need to see multiple docs?

    #112653

    candida_sucks
    Member
    Topics: 3
    Replies: 148

    cburke007;51169 wrote: Wow, fantastic. That’s exactly what I needed. One question though. I see there are a lot of different specializations. What ones would you target specifically? One of the nutrition specialists on there I saw earlier this year, Antony Haynes, is listed as autoimmune conditions as a specialty, which is partially what I am dealing with even if the source of that autoimmunity is the dysbiosis itself. He did help me identify another possible cofactor in my illness, that I have high antibodies for epstein Barr and one of the herpes simplex viruses, from when I had mono as a teenager. The antibodies themselves don’t really prove that they are reactivated, but it could be a factor.

    The supplement he prescribed for me was humic acid, and took me off of probiotics and antifungals entirely to try to focus on getting the viral thing in check. It only made me feel worse, without the usual balance of feeling some improvement. Mostly it just elevated my blood pressure to a scary point at which time I stopped taking it and went back to treating myself by getting my probiotic dose up again.

    He did seem very good at what he does, but he does not specialize in dysbiosis specifically, so he seemed to struggle with what to do for me regarding the dysbiosis and especially the liver detoxing. There was no real discussion of that.

    I would think maybe the best place to start would be with someone that specializes in the gut, and hope they also understand detoxing and autoimmunity? Or maybe I need to see multiple docs?

    I don’t have any personal experience with nutritional therapists, but I’m assuming (perhaps incorrectly?) that they do not have the same level of education as an MD or ND. I also don’t know what all the credential acronyms (like ION and MRCP) mean next to some of those people. If it was me, I’d start with an MD or ND, probably someone with a specialty listed as general medicine or internal medicine, like Dr. Mantzourani, MD or Dr. Maizetova, ND. It certainly sounds like Haynes wasn’t up to the task for your particular issues.

    Here’s an article written by Dr. Hyman, MD on autoimmune problems. He is the chairman of the board for the Institute for Functional Medicine. Yeast overgrowth is mentioned in the article:

    Autoimmune disease article

    Cheers,
    CS

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