@JES I've had IV Vitamin C without results, have thought about liposomal Vit C but haven't gotten round to it
I also did sustained high dose IV vitamin C for 2 years, first with my cancer treatment (successful), then for my infections. It helped, but wasn't enough for the infections, as my immune system was too broken to work.
@Learner1 What did your family member use to cure those conditions, I'm always interested in hearing about people who beat this thing
Finding celiac and allergies to milk, eggs, fish, and coffee. Healing the gut. Righting zinc/copper imbalance. Lots of methylation supplements. Amino acids. Algae- based omega 3s. Supplements like inositol, CDP-choline, CoQ10, and acetyl-l-carnitine.
I don't remember what sort of test it was that was used to find EBV, four antibodies were tested, it has been a while since Ive had one done.
Of the other viruses you mentioned only CMV have I been tested for, it came up negative. If those others came up positive what would it mean? Would it indicate a need for rounds of some antivirals?
Define "negative." I had several doctors look at my results and say they were negative, as I mainly had high IgG titers and no IgM. And the standard 4 EBV testes were negative on several occasions.
However, IgM is high with an acute infection, which I'd had years before, and my high IgG titers fit the latent, recurrent, chronic version. My naturopath correctly identified these and we tried energy natural treatment we could with some success, but we chased them for several months as they kept coming back. My liver numbers were high, too, serum ferritin, AST, and ALT, which have improved with treatment for the infections.
I looked locally for an immunologist, but couldn't find one, but found a ME/CFS expert and flew 2 states away to see him. He looked at my titers and said "I know what we were taught in med school, but you are very ill with these infections." He found the EBV which had been hiding - research says there are people like me that don't respond normally to the standard tests. I had high VCA and PCR.
He measured my IgG subclasses and found low subclasses 1 and 3 which fight bacterial and viral infections, common in ME/CFS patients. At that point, my total IgG was at the bottom of the normal range, though it later dropped 150 points and was low, too. My other immunoglobulins were low normal.
EBV, HHV6, and chlamydia pneumoniae are nasty bugs. They fo a lot of damage and are hard to kill. The doc thinks they caused the adrenergic antibodies that have given me POTS and the muscarinic antibodies linked to ME/CFS.
Having an immune system that couldn't fight was keeping me sick and causing a cascade of health problems no matter what wonderful natural treatment I tried. I will say, I don't look sick, and I'm more functional than I should be given how sick I am, so the sizes and supplements have helped my body cope with the ongoing battle and kept me out if bed or a wheelchair.
I just needed to add bigger guns to the program. I'm taking antivirals, IV antibiotics (the bugs just laughed at the oral versions while screwing up my gut) and IVIG - immunoglobulins from healthy people to boost my immune system.
Given what you've shared, its be wise to really look and see if your immune system works and be thorough about seeing if you have any sneaky hidden infections.
I have been tested for reverse T3, TPO, and probably for thyroglobulin antibodies, think I had one other antibody specific to the thyroid tested as well, they are negative every time I test them
I have tried a thorough allergy diet for over a month without any results and haven't excluded grain since
It sounds like your gut is an ongoing problem. Identify any current food intolerances and avoid them. Leaky gut can cause undigested food particles to get into the bloodstream, where the immune system. learns to attack the unexpected invaders, giving you food intolerances.
How did you find you weren't celiac? A lot of times it can be missed - even with a biopsy and standard blood tests only look for some antibodies. You might look into a Cyrex test which tests for call the various gliadin antibodies. They have some good cross-reactive good testing, too.
Or, you can be on a Paleo Diet and avoid grains altogether. Everyone in my immediate family has a gluten problem, but I'm also allergic to corn and quinoa and my child is also allergic to rice. We've found grains are not our friends - they mess up our guts.
Given your history, its likely there's at least one good in your diet giving you problems. Likely more.
Its challenging to figure out, but the cost of not doing so messes up your gut, makes you nutrient deficient, promotes inflammation, tikes up your immune system, and keeps you sick.
Every fourth IV my doctor gave me wouldn't be chelation but rather vitamins n minerals to replace what might have been lost, kidney and liver were monitored through blood testing as well
That sound sensible.
Just found out my GSH levels are low, been taking methylation supplements but, while they were enough to lower my high homocysteine they havent done much for my GSH so i'm starting to supplement reduced glutathione and plan to retest in a few months. On a side note, there were other things on that same test I ran that interested me, specifically, low CoQ10. Hopefully I'll get some good results by getting my CoQ10 high normal.
You don't seem to be using your aminos to make GSH - glutamine, glycine, and cysteine aren't low. On the other hand, are you using it up too fast or not recycling it well?
Fighting infections can use up glutathione, so that may be a clue. Taking IV or liposomal glutathione may help temporarily.
CoQ10 is needed for mitochondria - being high normal should be fine.
I don't know if I live near toxic stuff but I think the cause of my illness is the ADHD meds I took for many years as a kid, when I was on them I developed photosensitivity, paranoia, occasional insomnia, and a shy withdrawn personality when I was formerly outgoing. I wouldn't have bowel movements on days where the pills were taken and the constipation became chronic and didn’t go away till I started betaine hcl w/ enzymes years after stopping the meds. I also developed strobing behind my eyelids and visual distortions like TV static that still haven’t gone away. Also, on the days I took those pills I wouldn’t eat lunch because of lack of appetite which can’t have been good for me, and, in addition, my energy was just generally low when on those pills, couldn’t really think straight either.
ADHD meds can negatively impact mitochondria and deplete you of B vitamins.
Root causes of ADHD are food allergies/intolerances (particularly gluten and milk, but others, too) disturbed gut microbiome (which makes the majority of your neurotransmitters), zinc/copper imbalances, oxidative stress and nutrient deficiencies, especially Bs, aminos, and omega 3 fats.
A anti inflammatory, nutrient dense, Paleo/ketogenic diet is helpful in many cases.
The other thing is that I inhaled a lot of fumes from burning plastic shortly before my CFS became something much more severe than it had ever been before. So I need to find a way to test for/detox that.
Hard to test for. Keeping GSH high and liver and intestinal function working well will help you excrete it. PolyMVA can get it if its sequestered in your mitochondria, but then you need to be able to process it and excrete it.
Have checked out my genes w/ 23andme and genetic genie, delt with that using a bunch of methylation supps, probably has improved me some but not enough. Definitely was worse though before I started with the doctor who set me up with those methylations supps but I was also doing her other treatments like the chelation, zinc supplementation, testosterone boosting using a herbal supplement, and others so I can't say what did it for me
I supplement zinc a good bit, plasma zinc is always low on tests unless I'm supplementing and I have tried to correct deficiencies where I found them without luck
I've tried all of these:milk thistle, curcumin, artichoke, B vitamins; no luck unfortunately
That sounds wise. You may not notice but fixing deficiencies helps give your body what it needs to be normal.
From the info you've provided, I suspect the problem lies with your gut, your immune system, and possible infections.
It sounds like your had decent help, but may not have investigated these areas enough. There's not a lot of expertise out there.
I suspect that avoiding foods that are bugging you, killing any parasites, being on a different diet, and working to optimize the strains of bacteria in your gut will help a lot. Then figuring out any immune system problems and finding and treating any lurking infections.
I've never heard liver infections mentioned before. What would be a good way to detect and deal with them?
Your liver filters everything in your body, including infectious agents, which can tajecup residence there.
Testing for infections and treating them systemically would help.
About amino acids, my BCAA's and methionine were borderline low, I supplemented for over a month without results.
You likely need methionine because your methylating so much. Most people don't need it. I do, and find I start to get edgy, depressed, and cranky tired, when I do. My doc monitors homocysteine and when it goes below 6, I seem to need it.
Low BCAAs have been found in PwME. I take them and don't notice anything specific, nut I've also learned if I'm deficient, my body probably needs it to be normal.
Amino's that were high: Arginine, Threonine. Amino's that were borderline high: Lysine, glutamine, 3-methylhistidine. Amino's that were low: Ethanolamine, phosphoserine. Amino's borderline low: Urea, Tyrosine. I supplemented tyrosine also without luck.
Do you have PEMT, MTHFR A1298C, and/or CBS SNPs? You may have issues with your Kennedy pathway, which work with phospholipids used in your cell and mitochondrial membranes. Supplementing with NT Factor may help. (Look up Garth Nicolson). Even without those SNPs, you could have increased oxidative and nitrosative stress damaging your membranes. Keeping sufficient folate and B12 in you is helpful, too.
Tyrosine is used to make dopamine. No tyrosine, no dopamine. I spent a long weekend on the couch, unable to move...my naturopath told me to take 6g of tyrosine and I was revived immediately... I take 3g daily still.
NK cells are fine, never checked immunoglobulins or cytokines but have supplemented IgG for my gut without results.
Probably worthwhile to investigate theseQQ.
Yippee!! Get checked again yo be sure and look for coinfections, too... Lyme testing isn't always accurate.
Man, that sucks having lots of infections, hope treating them gets you well for good.
Yes it does. I hope so too. The weird thing is I didn't feel sick for the last 5 years and my WBCs were normal. But, when I started IVIG to boost my immune system, then I felt sick and WBCs went up.
No celiac, I've been tested.
Again, how? It, or at least, gluten intolerance, may have been missed.
I've tried the xymogen probiotics and a bunch of others without any overt symptom improvement, currently I'm using S. Boulardii based ones, a beneficial yeast, can't tell if it is working but I'm still taking em.
Lookin over my stool tests I see that my lactobacillus came up as nonexistent while the other beneficial bacteria, Escheriachia coli and bifidobacterium came up as high as possible so I suppose I should try and balance those out. These are from a Genova lab's Comprehensive Digestive Stool Analysis
Having done stool tests for years and taken hundreds of dollars of high quality probiotics only to now have no lactobacillus and bifido bacteria myself, I can say that this is far more complicated than it seems.
Having no lactobacillus isn't good. Nor is having a huge amount of any one thing, to the exclusion of others. There's no right answer, not enough known, but eating prebiotic foods and a wide variety of healthy foods (avoiding foods treated with RoundUp (grains and legumes), pesticides, and antibiotics) is a good start. Then, looking into more exotic probiotics like Equilibrium, Mutaflor, Symbioflor, PrescriptAssist, and Dr. Ohhiras may help cultivate diversity.
I was pretty thorough with limiting food allergies during that month plus I did it, it was even a rotation diet just in case I had some weird sensitization going on.
Unfortunately, its more like a 4-6 month project.
I don't know how my stomach acid is doing but since it was central to my getting well the first time I had a serious remission from CFS and might have had a lot to do with my getting CFS again when I supplemented too much I figure it is a fairly important thing in my case so adjusting it up or down might get me good results.
Hmmm... Could it be affecting your microbiome? Maybe test to see if you really need it?
I've collected all the gut focused tests from my notes, those that I haven't taken yet anyway, I'll post them here for those interested; hoping one of them will be enlightening for me
Nice list! Worth checking some of them out, especially the liver and gall bladder ones. I'm not a fan of Xrays or anything that can perforate intestines. And you don't have pancreatitis - you'd know it if you did...
Sounds like even though you be hsdcsome decent care and done a lot of testing, you still don't have the answers you need. I ccan see why your parents might be frustrated, and the easy answer is that its all in your head. It's not. You have a serious medical problem and need to find out what it is and treat it. Theres something going on that's treatable and you need yo find it and deal with it.
This is vexing, not fun, and its not fair. But you've come this far and you can keep going. You be already learned s lot about what you need. Its just this problem is more complex than you ever expected.
Hang in there snicker us know how it goes!
Best wishes...
DISCLAIMER - I am not a doctor, and what I've said is my opinion as an experienced patient, not as a medical professional..you should discuss with your doctor before taking any action on the above advice.