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Can you explain this further b/c in Hashimoto's Disease (at least in my case), I have both autoantibodies, TPO and TGAb. There are other autoimmune diseases like LEMS in which a person could have both the P/Q type and the N type Calcium Channel autoantibodies. Would these be exceptions to that...

I didn't mean to imply that mold illness equals ME versus, in my personal opinion, that mold/mycotoxins is one potential trigger of ME. It is certainly not a trigger in every case but I believe it is a trigger in some cases.

I didn't vote either but I believe strongly that environmental triggers are one (of many) causes of ME in some cases. Environmental medicine is legitimate (at least in the US) and the mold doctor that I saw in 2015 was phenomenal. She helped us with all aspects of dealing with recovery from...

Is there any known treatment for this virus? Does it respond to HIV medications?

I don’t think you can say yes or no b/c the triggers are so varied (and many have multiple triggers). My illness (whatever it will ultimately be called) had a series of immune triggers: 1) Neurotoxic reaction to antibiotic 2) Severe Mono from EBV 3) Toxic black mold exposure 4) Second unknown...

I think environmental triggers like toxic black mold, certain pesticides/sheep dip, vaccines, etc, can be the trigger of ME/CFS in certain cases just as viruses and pathogens can be the trigger in other cases. That is my own opinion which of course I cannot prove or disprove.

Absolutely beautiful and equally heartbreaking.

I just watched this video and agree that it is very well-done. It was interesting because the doctors in the video spoke about the calcium channelopathy theory (as if they had proof unless I misunderstood them?) and also spoke about the connection to mast cell activation. I get so confused re...

Thanks @Inara and it sounds like we are interested in a lot of the same topics and research. I know all of this research is in the preliminary stages, like you said, but we have to start somewhere and even the biggest breakthroughs started with a tiny glimmer (unless they got really lucky the...

I totally agree with you! I do not dismiss that all of these potential treatments have risks (IVIG, Rituximab, IA or PP) but I would still want to study them much further and isolate the responders to figure out why they are responders? I would love more Q&A on all of this and agree with you...

Sorry, I didn't mean that you (or anyone!) wasn't allowed to say it. I just wish there could be more of a discussion amongst the individuals who are experiencing the illness or have certain symptoms or got certain tests results. I find it strange that both of my doctors (who are really solid...

Sorry, I did not realize you meant EBNA (and that is one of the tests I have been positive on since having Mono). I just Googled yonks (and still don't know what billy means!) and I sometimes feel I do not know enough British terminology to follow some of these discussions (but that is my...

It explains it to me and there is a really interesting discussion about it on the other board. I wish there could be one here too vs. all the research being immediately dismissed. I thought maybe it was just the studies from Dr. Sheibenbogen & Cell Trend & OMF but this is from Cincinnati...

This video was posted on the other board and it explains how the EBV virus leads to autoimmune diseases. It explains it better than I ever could!

I guess we agree to disagree as usual :banghead:;). My doctors who know my entire case are convinced it was viral (EBV + others) that shifted into autoimmunity several years post-Mono. I would have to ask them re: the specific evidence but they state it as a if it were a given (but I guess...

Because they are an enormous money maker for Ortho-McNeil/Johnson & Johnson. They are one of the top drugs in the US (maybe worldwide, I am not sure) which shows that they are given out like candy if a drug that you take for seven days is given as frequently as a med that someone would take...

Thank you (re: my mom) and it really is true re: our system. You pay a small fortune for the insurance every month, but this is absolutely NO guarantee that they will pay for what the doctor says you need, even if it is just a basic medication from a pharmacy. The hospital (at least 5-6...

Thanks for explaining all of this, LB, and I really want to learn more about the different systems. In the US, if you have an HMO, then you are assigned to a PCP (GP) who is like the gatekeeper if you want to see a specialist. But if you have PPO, then you are not required to even have a PCP...

I do not believe that EBV is a risk factor for everyone who encounters it. Some people get severe mono, they recover, and it never affects them again. But in others, it can lead to ME/CFS, to MS, to autoimmunity, and even to cancer. It is a risk factor in those who are susceptible to it (even...

Welcome @Thinktank and great to see you over here. You know my story already but a neurotoxic reaction to Levaquin was the very beginning of my entire illness and the first trigger in a series of hits to my immune system. Hoping for the day that Levaquin is banned from the planet.