Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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mitochondria, mercury, methylation, mycoplasma

Discussion in 'General ME/CFS Discussion' started by stridor, Oct 25, 2015.

  1. stridor

    stridor Senior Member

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    I have put off writing this for a while. I have been waiting "for the other shoe to drop" but it has been months now and I am still moving, albeit slowly now, towards "better". I am almost recovered.
    I got this way by finding people that I identified with and who had success with what I wanted to do.... and then I did what they did. With this in mind, I am going to give a quick history and then list the things that helped me. Just in case there are others on my path.
    I had a long history of Bipolar symptoms with hospitalizations. I never responded well to treatment and took over my own care in 2007. Successes and failures. By the summer of 2010 I was having anxiety attacks, OCD-like thinking (one topic for months), agoraphobia - I played the mercury card. I had huge exposures on the farm
    When the fillings were removed unsafely ME/CFS symptoms cropped up but I didn't know what they were at that time. I only knew that after any activity I would collapse 2 days later, plus I was too tired to move, couldn't stand, and had brain-fog and cognitive problems that were interfering with communication.
    By the summer of 2011, my wife was helping me to stand. My muscles were wasting. I was on thyroid and adrenal replacement therapy. I would lose my breath trying to talk.
    On the bright side, all cycling related to Bipolar was gone and on the down, I had a colourless, humourless, "all-low-monoamine-depression" that was part of my ME and so was diabetes insipidus.
    On my second methylation attempt, (there is a post somewhere "A B2 Story") mB12 turned on the lights and I was able to return to work. Urine production returned to normal within 48 hours of starting mB12.

    By this time, I had the diagnosis of Hyperplastic Polyposis and was being scheduled to have my colon taken out (ileorectal anastomosis). I also had been tested and had blood flowing the wrong way in my neck = CCSVI.
    Freddd's Protocol allowed me to function reasonably well in 2013. I could be up all day and so long as I didn't push things I was able to go to work. There was some brain-fog but it was better. I could do light yard work for 2 hours without any payback. I could still trigger a "fatigue event" but it took about 3 hours of walking by the fall of 2013. With regular breaks, "life wasn't bad".
    In 2015 I went after mycoplasma (also have HHV-6) and this has been as big of a step up as mB12 was.

    I also have lattice degeneration (holes in retinas) - no new activity; psoriasis - approx 50% better if I stay away from certain food; eczema - remission but expect some this winter maybe; tinnitus - 75% better. My gut still does not work very well. I have to work hard to keep iron, B2, folate and Vit D levels up.
    I am able to lift light weights and am increasing but I am 61 and do not feel the need to reach for the stars :) I go out to the workshop for 7 hours planing wood by hand. I am beat by the end of the day but am ready to go again by the next morning.

    OK, you've been very patient with me. Thank-you. Here is my list:
    Things that helped with brain-fog and fatigue..

    Vitamin C - and lots of it. Liposomal when I was the sickest. I put a recipe on this site somewhere.

    Thyroid override. I have a TSH of .01 or there abouts. My thyroid is shut down and I keep my T3 level pegged at the upper limits. This also quelled mood swings (IMHO).

    Hydrocortisone - Was taking 13 ACE caps and my wife was still helping me to stand. I took 35 IV treatments as well. Nothing worked. You don't get to think without adrenals. My first doses were OTC ointment put into capsules. It meant that with effort I could get up the stairs without doing hand-over-hand on the banister.

    Magnesium - assumed. Added with a bunch of other things so can't be 100% sure.

    Thiol diet - I can have some thiols now. At one time thiols would make my sick for 2-3 days.And by sick, it was always brain-fog. fatigue and malaise.

    Nicotine patches - nicotine is neuroprotective against glutamate toxicity in rodents. It has a mild stimulating effect and when added to thryoid and hydrocortisone allowed me to be out of bed. Used it for 1 year. Do not use gum if there are amalgams in place.

    methylfolate and methylB12 - The B12 turned on the lights for me. When I feel an increase in fog, I open a mfolate cap and pour it into the buccal pouch. I can't seem to absorb this stuff well. I take a lot of B12.

    biotin - this one was a surprise. I was taking 6-8 caps a day but am down to 2 now.

    B2 - not really a rung in the ladder on its own but could not do methyl supports without it. I have had the symptoms of low B2 twice before I figured this out. Used 3 places in energy production.

    Potassium - needed it in the first year or so of methyl support but don't take it now. Like B2 did not help with fog directly but allowed me to take the things that did.

    l-carnitine fumerate - I battled with a different form = acetyl-l-carnitine 4 times. Horrible setbacks but it seemed to me that it would be something that was good for me. I was "carnitine shy" and held off on trying LCF too long. World of difference between the two for some of us.

    Adenosylcobalamin - The 2nd form of B12 - used in mitochondria to produce energy. When needed the first dose is quite a lift!

    n-acetyl glucosamine - helps with immune function Supposed to help with CYP enzyme problems. Took it for a year.

    bupropion and tyrosine together - neither worked particularly well on its own at first. Dropped tyrosine after a year because I was getting irritable and bupropion did fine on its own. Trialed off bupropion as well in 2015 and there was a drop in function. Will try again in 2016.

    Treating mycoplasma infection. 27 weeks of antibiotics and 20 H2O2 by IV. This was as big of a step as the B12. This doubled my capacity for activity during the day and dropped brain-fog to zero for much of the time. I also have HHV-6. I hope that with mycoplasma out of the way that my immune system will deal with this on its own.

    NAC - This takes weeks to kick in for some of us. I couldn’t take it for a long time when chelating - it increased fatigue and brain-fog. Phoenix Rising says that this is because it can strip B12. I guess I take enough to deal with this now because I added it in the spring of 2015 and it has improved energy.


    These are the things that I am reasonably sure about. There were others that worked or seemed to work for varying periods of time and were either placebo effect or temporarily helpful. Everything occurred against the backdrop of chelation therapy using the Cutler Protocol. As well, gluten-free, very, very corn-careful, mostly dairy-free and generally trying to avoid anything that pissed my immune system off.

    “Recovery” may or may not be an appropriate term. Is Bipolar gone or just very successfully treated? I have no plans to go off of thyroid pills to find out. So, my thyroid and adrenals never made it and I had my colon removed in 2013. (Hyperplastic Polyposis is related to disruption in methylation, low glutathione and my genetics).

    I will carry the scars of this metabolic storm with me forever.

    In 2012, before Freddd's Protocol, I was sent home from work "incapable" after 3 months I was asked to be Team Lead. After retirement this year I was asked to return as a “Consultant”. I am pursuing several interests and am in a photography club and writer’s group. I am able to be active for about 7 hours a day. I get tired but sleep is restorative and I am ready to go again the next day.

    I will capture my story in a series of You Tube videos as people on this path get too sick to read. It will be my winter project.

    My memory is better but far from perfect. My wife says that I can remember anything that I want to though :)

    I want to thank @Freddd and the many people here who helped and inspired. I promise to drop by from time to time and will follow this thread if it becomes one :) brad
     
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  2. jess100

    jess100 Senior Member

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    Stridor, I'm so glad to hear you are well. And, mostly without pharmaceuticals. (I'm guessing the T3 is levo or similar)
    Thank you so much for such a detailed (and hopeful) post. It sounds like the amalgam removal (plus prior exposure to mercury) set the CFC/ME in motion. Do you think that's what set it off? I don't see any tick borne diseases that could account for the onset of ME?CFS.

    Thanks again for posting
     
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  3. helen1

    helen1 Senior Member

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    Fantastic news @stridor! And what a lot of work and such persistence.
    A few questions for you:
    When did your sleep start improving? What do you think caused that improvement?
    How did you manage the night time dosing in the cutler protocol?
    How did your gut handle the 27 weeks of abx?
    About the NAC, did you increase b12 when you started it and if so by how much?
    Thanks so much for letting us know this good news.
     
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  4. aquariusgirl

    aquariusgirl Senior Member

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    Hold in ...didn't you chelate Mercury for years.,? Wasn't that the first big gain?
     
  5. stridor

    stridor Senior Member

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    Yes, @aquariusgirl it is hard to capture my story in a couple of paragraphs. Buried in there somewhere it says that everything occurred against the backdrop of chelation. I do not believe that I would have been able to get my methylation pathway up and running as well as I have if I had mercury on board.
    However, I was sick as a dog after 100 rounds. Chelation alone was not going to cure me. I was starved for mB12 and I had infections.
     
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  6. stridor

    stridor Senior Member

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    @jess100

    I was exposed to mercury at a very tender age. we used it on the farm, I had open mercury in my bedroom and later a mouthful of fillings. I contend that genetically I was not able to clear mercury and started hoarding at an early age. Mercury also crashed the immune system and allowed mycoplasma and HHV-6 to set up house.

    Epigenetic changes and plain old poisoning led to the Bipolar symptoms. I was "Mad as a Hatter". I think that problems with the methylation system played apart in a gene not being told to shut-up and I ended up with over 100 polyps. Little is known about this rare disease only that there is a disruption in the methylation of DNA and low glutathione.

    While mercury likely got the ball rolling, problems with methylation means impairment of the detox pathways. IMHO everyone with our type of problems should be tested for metals.

    @helen1

    Sleep was terrible in 2011/12. It started to get better after I got mB12 on board. 6 months ago if you had asked me I would have said that my sleep was pretty good. It is only after treating the infections that got me thinking, "oh yeah, this is what sleep used to be like, I forgot".
    Waking at night was just something that I did for 4 years. I had this vibrating watch that I taped to a cookie sheet and put far enough from the bed that I couldn't shut it off in my sleep. My wife deserves a medal/
    By gut has done well with the doxy I was worried because without a colon I am supposed to be susceptible to diarrhea. There's something that's interesting....when I started the treatment all my food preferences changed. I just woke up one day and wanted lots of fruits and veggies. Without trying my diet went paleo or zone. All I want is meat, nuts, oils, fruits and veggies and eggs. I actually get excited when I think about raw broccoli, I didn't even believe that it was food 6 month ago.
    I did not increase the mB12. I take 2 x one mg injections a day. I seem to have just stumbled on the right dose. It's weird. When I try to cut back I get worse and every now and then I take extra but things stay the same. I haven't had many breaks on this journey but I guess that was one :) brad
     
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  7. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    How did it come to be that you had open mercury in your bedroom? I grew up on a farm and the only mercury I can remember (or knew of?) was in the thermometer.
     
  8. ahmo

    ahmo Senior Member

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    @stridor Thank you so much for posting. Congratulations on your mighty successes.:trophy::hug:
     
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  9. M494MC

    M494MC

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    Stridor, congratulations on your big improvements.

    How did you know you or think that that you had CYP enzyme problems?

    What type of testing did you do for HHV-6?

    What did you take the biotin for?

    I tried hydrocortisone for awhile at 15 mgs but felt better off of it.
    What was your dose?
     
  10. stridor

    stridor Senior Member

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    @ScottTriGuy
    Hi Scott, An electrician who was visiting the farm gave me the ballast from a transformer. It would have contained about 25-50 thermometers worth of Hg. It was spilled into the shag carpeting beside my bed and whatever could be salvaged was scraped into the lid of a peanut butter jar and put on the dresser. So 2 sources within 3 feet of where I slept in a basement bedroom with the windows painted shut. I was just a kid. I didn't know that mercury evaporated.
    Hg was used to spray the orchards. We used an old wooden sprayer as our "clubhouse". This thing was around for decades as the wood was impregnated with Hg, plus lead-arsenic sprays. When I was old enough I sprayed the orchards without any protection.
    The important thing to remember is that everyone here has been exposed to enough mercury in their lifetimes to kill them a few times over. It isn't necessarily a question of exposure so much as a question of whether a person's detox pathways can handle that exposure. It is my contention that most people reading this are potential mercury hoarders just like me.

    @M494MC
    Hi, The CYP SNPs were from Sterling's report. I did not take the NAG for that though as I did not know about this until later on. I took it as part of my search to heal my gut which remains my biggest remaining hurdle. It was one of those supplements that I just felt better on at the time. If I ran out, I felt worse. I was never able to quantify any of this - it was just a sense of doing better with it. This stopped when I started the antibiotic treatment but I have no idea whether there is a tie-in or if it is a coincidence.
    The mycoplasma and HHV-6 were part of a "Chronic fatigue Panel" that my Dr was doing. It also had chlamydia and Why it took him 4 years to offer this is anyone's guess. The testing is kind of expensive because it involves screening for the DNA of the little blighters. There was at least one other on the test but I don't remember what it was now.
    http://www.ncbi.nlm.nih.gov/pubmed/12887507
     
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  11. Tammy

    Tammy Senior Member

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    @stridor....................the use of Mercury in our history for all different kinds of things is frightening! Do you think metals can be passed down...........from mother to baby?
     
  12. stridor

    stridor Senior Member

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    @Tammy Back in the '70's a bunch of race horses started aborting foals in Kentucky. Million dollar foals. The mares looked healthy enough. It turned out that there was an insect eating the foliage and the feces was poisonous. The mares were pushing the poison across the placental barrier. This is what mammals do. It isn't a "right or wrong" thing. it just "is".
    Somewhere there is a video by Dr Boyd Haley (also from Kentucky) and he plotted autism against maternal amalgam fillings. It contributed to the mercury theory for autism which has yet to be swept completely from the table. Although we think that it is more complex now. So yes, moms pass mercury to their kids. My mom drove tractor when the orchards were being sprayed in the spring of 1954 and I was born in the fall.

    @M494MC
    Back to your questions. Biotin -
    http://www.fitday.com/fitness-artic...n-what-is-it-and-why-is-biotin-important.html

    This was recommended by the same guy who came to my rescue in 2012. He said, "you have Bipolar, CFS, mercury toxicity and bowel cancer? You are welcome to a family reunion anytime - we have methylation problems". At that time I was an absolute mess after trying SAMe and TMG. One of my worst depressions ever....and I know depressions. I had just found out about the CCSVI.

    He could have told me to try just about anything and I would have :) He saved my life. Matt, if you ever read this brother...thank-you.

    I take hydrocortisone 5 mg x 5 daily and try not to go over 30 mg with stress dosing unless I am physically sick. Have you tried the flashlight test or the blood pressure test? When my adrenals crashed I couldn't stand up on my own sometimes, I rocked back and forth in chairs to get momentum to stand, just like an 80 year old.

    I couldn't follow conversation - couldn't process what people were saying. I wished that everyone would just shut-up and leave me alone. An entry like this would have taken me maybe 4 hours to post. The Dr's said that I was depressed. I told them I was sick.

    I was denied HC and so I bought empty capsules and a tube of HC ointment after clearing it with the poison control center. This allowed me to think well enough to find a Dr who understood what mercury does to the endocrine system.

    I also had a TSH of 3.5 and had antibodies but could not get thyroid meds. I can not describe how sick I was - buried by ME/CFS, mercury toxicity and with my adrenals and thyroid subpar.
     
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  13. stridor

    stridor Senior Member

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    I am always on the look for the next rung for my ladder. I am still doing well.
    I have added nigella sativa http://next-level-nutrition.com/?p=12014 to help heal my gut...failing that, to at least let a damaged gut function optimally.
    Piracetam - this is a nootropic that my Dr is recommending. He saves this to the end of treatment....I guess I have arrived. I will report on these at a future date.

    This is weird. Less than two weeks into the treatment for mycoplasma, I went to the fridge and took out all different foods than usual. I have gone paleo without trying. I want fats, veggies, fruit, nuts, eggs and I make myself have a bit of meat. It is broccoli that is funny. I have never had a food craving before and it is pretty funny - I want raw broccoli 3 times a day. This has been going on for months. Many people without a colon can't eat all the veggies that I am. I guess I am finally lucky about something :)
     
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  14. Violeta

    Violeta Senior Member

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    Thank you for posting your story, @stridor. It's very encouraging. That's great that you could work through all that, it's difficult when you are tired and have brain fog.

    Thanks also for taking the time to answer all our questions. It's very nice of you to come back and try to help others.

    I have three questions, too.

    When you stopped using liposomal vitamin c, what form did you switch to?

    I've never seen the term lattice degeneration of the retinal. What type of issue does that cause for vision? I've had something wrong with one of my eyes since youth, it looks as though I'm looking through a black veil.

    Do you know what changed that you are now able to eat thiol vegetables? They do make me sick, too. I have tried eating them all different ways and with a lot of kelp, but it is only getting worse.

    Thanks again, and congratulations.
     
  15. stridor

    stridor Senior Member

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    @Violeta
    I agree. I seem to have an almost savant ability to connect the dots and understand relationships that has allowed me to pick the important things from Dr Google and leave the irrelevant behind. But I didn't do it alone - I got here through "the kindness of strangers". Their stories and suggestions helped to keep me moving forward.

    I went on to regular Vit C for 2 years but have returned to liposomal again. If you have made this you know that it doesn't happen on its own. I am a pretty lazy guy :) I imagine that I will stay on LVC for the next couple of years at least.

    Lattice degeneration causes holes in the retinas and occurs in probably about 15% of the population - so not rare. The first symptom that people often notice is the "black hole" of a retinal detachment. Maybe I got lucky. I had sensitivity to florescent lighting that was so uncomfortable that I wore sunglasses indoors for about 3 years.

    One day when walking in the bush I tripped and impaled my left eye on a stick. During the operation to save the eye the surgeon noted a fairly advanced case of lattice deg. Sensitivity to florescent lighting went away with laser treatment - I have never heard of anything like this with others so I may be weird or this could be a coincidence.

    There have been no no holes since moving against mercury and putting the antioxidants in place.

    The "black veil" thing that you describe is not that far off of what I had in 2010 and 2011. I had a couple of visual disturbances ( for lack of a better term). I had tunnel vision that was worse in the mornings - this is hard to describe but it was like the center of my vision was lit normally and the peripheral was a bit darker.

    People could sneak up on me from the side - there was absolutely something happening with peripheral perception. Along with this I had a hard time to focus on the computer screen for a couple of hours every morning. By mid-morning my eyes would learn to accommodate distance, but I had to do this every day.

    Mercury is not evenly distributed through the brain. Two areas of increased concentration are the visual cortex and the hypothalamus. The latter fuels all the dysautonomia and endocrine symptoms. The 3rd cranial nerve passes through this area and can become contaminated as well. https://en.wikipedia.org/wiki/Oculomotor_nerve

    The visual stuff were some of the first symptoms to leave with chelation.

    Thiol foods were a disaster in 2011. They increased brain-fog and fatigue. It was indistinguishable from PEM except that it started well within 3 hours of the meal - it would hang on for a couple of days. In May 2011, one day I woke up feeling like crap and then I had 2 boiled eggs for breakfast. 2 hours later I could hardly stand. I still was not putting 2 and 2 together back then and thought that it was Mg toxicity from too many IV treatments. I was at the Drs office and I had their attention.

    Tolerance of thiol foods started after the dump phase (I am using Hg-tox terminology here...about 9 months after starting chelation). I could pretty much eat what I wanted in terms of thiols since 2012....but that wasn't very much as it didn't talk to me.

    I have had raw broccoli 2-3 times a day for weeks and weeks and still get excitement preparing it. Maybe it will help with my PSA quadrupling in 2 years. I am TYMS++ so don't repair DNA well, I guess. That is one of the reasons I chose to go back on the LVC. Cheers. I hope that you find the answers.
     
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  16. Violeta

    Violeta Senior Member

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  17. stridor

    stridor Senior Member

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    @Violeta Thank-you again. I'm going to that site right now.

    Quick look shows that broccoli is one of the highest foods in boron. Holy crap, how cool is that?
     
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  18. stridor

    stridor Senior Member

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    Update:
    The antibiotic continued into December until I just couldn't go any further. The dysbiosis created by doxy coupled with my lack of an ileocecal valve has proven to be a bit of a perfect storm - suspected SIBO and leaky gut.

    One-by-one I started to react to other foods. I was already restricted with no gluten, corn, raw tomatoes, little soy, little dairy, and others. Now, I am down to veggies except tomatoes and peas (hummus?), oil/fat and meat/fish. I can have fruit, (no bananas) but I have lost my sweet-tooth. I lost peas last week.

    I have newly revealed antibodies to dairy and egg white and yolks but they are only IgG. I feel better with the eggs gone - I was eating a lot. Dairy I had removed from my diet except goat cheese once a month.

    The more I eat a food, the more I am likely to start reacting to it. The less types of food I can eat = me eating the same foods all the time.

    I still get hungry but feel mild nausea and get a fullness after a few bites - while being hungry at the same time.
    Foods give me hives and rashes, eczema, scalp psoriasis and scalp folliculitis. I have always been a skin-writer = dermographia and the odd hive maybe once a week. But things have changed fast.

    I suspect SIBO and leaky gut which are not rare with people who have had bowel surgery.

    I was diagnosed with Mastocytosis which is a relief because it also starts with the letter "M". (That was a stab at humour.)
    Antihistamines interfere with the prostate and I reserve them for emergencies. I take quercetin and Singulair to strengthen mast cell walls.
    I am putting all my eggs into the Histame basket. I had foods last night that should have lit me up and I only got a bit itchy (didn't look to see if there was any hives as I was in a social setting).

    I can not reverse my lifelong histamine instability. I can not replace the ileocecal valve. I will start with trying to lower dietary and bacteria generated histamine. I am going to do a round of Humaworm. If I have to work on the gut I'd rather do this knowing that the parasites have been cleared.

    Should have done this ages ago. I drank water out of the Nile in 1980. The product is bactericidal and I am going to pay close attention to how I feel with some of the bacteria are killed off. Option to follow with coconut kefir. Commercial probiotics in December made things worse.

    I have had a partial return of some fatigue/low energy but no OI or PEM. Sleep is still restorative. Brain-fog is a mere shadow of what it was and is often gone altogether.

    I have lost 28 pounds since last year at this time and am force-feeding myself one bit at a time. I lost 2 pounds this week. I might need to find a Dr who knows about this stuff.
     
  19. justy

    justy Donate Advocate Demonstrate

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    Was it Mastocytosis you were dx with, not MCAS? what type do you have? Most people with Mastocytosis will need to get on a whole cocktail of drugs in order to stabilise - H1, H2, Mast cell stabiliser + gastrocrom /singulair.

    You need a specialist masto Dr to work with you and sort out meds - it can take a lot of time to get there. Can you get to Michigan? Dr Afrin is there, I would go and see him if I could - hes pretty much the world leading expert in MCAD/Mastocytosis.

    Sorry to hear you have this diagnosis, but if it is Masto it would most likely preclude any kind of M.E/CFS, which is probabaly a good thing. How was the Mastocytosis dx?

    There are a lot of good support groups full of very knowledgeable people on FB - have a look around and see which ones you like the look of.

    I have a dx of MCAS, but am not convinced it isn't mastoyctosis. Ketotifen has increased my functioning in a way I had'nt expected.
     
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  20. ahmo

    ahmo Senior Member

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    @stridor Hi Brad. sorry to read of your ongoing troubles. I had excellent results with rutin for antihistamine, and royal jelly as mast cell stabilizer. I was able to almost eliminate them totally when I started activated form of B2, which I've written about in blog, FMN, linked in my signature.
     
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