@Lerner, thanks for all of this. I will try and digest all of it. I can’t recall all the tests I’ve had run over the years lol!
For PC, it was by IV. I had to do like baby doses, 1 ml - 2 ml.
From what I gather in talkingbyo the docs, the form matters for some patients. Was it derived from soy? sunflower? And was it water or lipid based. Perhaps another product woukd be better.
I think we will start with the antivirals and then go from there and delve deeper. I had an awesome nutritionist / Lynch trained doc I worked with about 2 years ago, and she was the one that identified all the methylation issues, mitochondria deficiencies etc that I had. We worked together for about 9 months and honestly it was the most in-depth analysis I’d ever had done. That being said, 9 months of supplements that should have helped did nothing for me. I reacted to almost everything or it didn’t do anything for me.
That's unfortunate. Excellent interventions can be a problem if not handled in the right order.
Given your OAT test results, I doubt you will get very far without certain supplements.
However, you have several problems stacked up, and, having gone through many of the same issues I think you need to work thtiugh your lust a but differently.
So we moved on to a mold / CIRS specialist and spend $40,000 last year cleaning out our home etc — again, no result and I kept getting sicker. So I’m kind of “burned out” on the supplement / methylation path as that hasn’t ever yielded results for me
Did you do a NutrEval, or just the OAT? The problem with the OAT, is it doesnt give you a good picture of antioxidants, just C and glutathione.
Given your results, I wonder what your levels of ALA, A, and E are. I've found that oxalates deplete them. The whole antioxidant sysyem works together, so if you are depleted in 2 or 3, it's not good. And then even though you mobilize toxic stuff, you can't get it all the way out of you and it just redeposits.
Methylation feeds glutathione, and a key nutrient needed throughout the process is B6. Your B6 was extremely low, likely because of oxalates. I had to go up to 400mg a day to start gaining ground. I know it sounds ridiculous, but B6 is used in a litbof other places, like heme production and making cell membranes, so if you're short, everything comes to a screeching halt.
My EBV IGG is above 600, and at last check my early antigen EBV was in the 40s (eek). We are rechecking that as its been about a year since that was ran (and we were focused on mold at the time). In about a week I’l start my first antivirals.
You need a PCR, both just antibodies. Does your immune system work? Did they test immunoglobulins, with subclasses? I had to go on IVIG to get anywhere. Also, is it just EBV? What about HHV6, CMV, zoster, HSV1/2 or other infections? Many of us have 2 or 3 herpes family infections and need to be on something like high dose Valcyte to get anywhere. Others can get by with Valtrex or Famvir.
Hopefully those will go well and if we peel back that layer, then if necessary I can re-start the path of methylation / detox.
I'd look at being on at least B6 (P5P not pyridoxine) and B12 in the short tern, given your labs.
We are also trialing some medications for mast cell activation.
Good idea. We monitor Chromagranin A and prostaglandin D2. I did well with high dose cromolyn sodium, ketotifen and benadryl. I have most meds compounded due to allergies to fillers. My doc has some patients on Gleevec. Neuroprotek, quercetin and jetotifen are helpful too.
I have a lot of autonomic dysfunction, lightheadedness, am dizzy 24/7 and have this weird burning sensation all over my body and brain that no one can seem to pinpoint.
Severe B12 deficiency? B6 deficiency? Some weird autoantibodies? Infection in yiur nervous system? Mitos?
The more I read here, the more I think that what is going on with me is that I’m having recurrent mono infections that are hitting my vagus nerve and maybe some of my peripheral nerves, and just causing tons of brain inflammation. Oddly enough, any supplement I try for brain inflammation doesn’t help (ugh) except doing keto which helped for like 2 weeks (felt like a rock star) and then it stopped helping.
I take up to 8g a day of Designs for Health CurcumEvail and 4g Thorne boswellia a day fir brain inflammation side effects of IVIG. Benadryl helos, too. Last ditch, as a mast cell stabilizer only, might be a benzo. Or dexamethasone.
All this said, oxalates are a driver of all if the above. Most doctors are woefully ignorant. They provoke fungal problems - lower oxalates and fungus improves. They sap antioxidants and B6 and create lipid peroxides and damage membranes. They are sharp crystals that cause pain.
The answers are not pleasant. A probiotic and enzyme are in clinical trials and will likely become expensive orphan drugs. In the meantime, a low oxalate diet and taking calcium or magnesium citrate with every meal, along with a probiotic like VSL #3 or Klaire Labs Therbiotic Complete is the answer. Best to do this first, should minimize candida. Oxalates also swap places with sulfur in the body - B6 is key to stopping this, as much as 5-7mg per kg of body weight.
Then, upping depleted antioxidants, like ALA, A and E will help info oxidative stress caused by oxalates.
You might look at low oxalate.info or the Trying Low Oxalates FB group for more info.
Once you've worked the oxalate problem for awhile, things should start to improve.
