By the way, anyone interested in how different viruses can cause Hashimoto's Thyroiditis may find the following review interesting:
https://link.springer.com/article/10.1186/1743-422X-6-5
Thank you for posting that article
@Pyrrhus and I bookmarked it to read when I am more alert. I need to re-do some labs and will be doing a phone consult w/my Endo in the next few weeks. I think there is something going on with my thyroid/Hashi's right now (although I don't think it has anything to do w/the original viral cause vs. progression of the illness). I don't want to take this thread off track and may post about it elsewhere in the future.
@Gingergrrl Is POTS the same thing as Dysautonomia and Tachycardia ?
Not exactly. Dysautonomia is the umbrella term that means "Dysfunction of the Autonomic Nervous System". Many different illnesses, syndromes, and symptoms fall under that term and POTS is one of them. POTS stands for "Postural Orthostatic Tachycardia Syndrome" and if you Google it or look at Dysautonomia International's website you will find a lot of info. Tachycardia is one of the main symptoms of POTS (but there are many other symptoms, too). Everyone with POTS has tachycardia but not all tachycardia is POTS (and there are endless other causes of tachy). Hopefully this all made sense!
Note: I think it's noteworthy? to say up front that I caught all of this pretty early (am able to elaborate on why/how), and that when symptoms started and tests started coming in positive I was in my peak physical condition as health, exercise, and training was basically my #1 hobby (also able to elaborate here). Meaning, I'm concerned I haven't seen the worst of this, and that I have the opportunity to address potential conditions before they completely manifest.
I think it is noteworthy and the earlier you catch something and get the right diagnosis and treatment the better (in addition to ruling out the wrong diagnoses). It took me several years to get to that point and I had several wrong diagnoses and treatments in the process.
The allergies and POTS don't particularly resonate w/ me.
I think if they don't resonate for you than you probably do not have POTS and MCAS (mast cell activation syndrome).
But I should probably stay on top of both and get tests done. Cause I worry that those are the types of things that might end up happening to me later on.
I agree with you and it is certainly possible to develop new symptoms at later points in your illness (like I did). I tested positive for Histamine at 4x the normal level in Dec 2014 but I had no allergic reactions and was absolutely certain the test was wrong... and then in Feb 2015, I had my first episode of anaphylaxis (to a yellow dye in a candy). And then by May 2015, the allergic reactions progressed until I was allergic to all food but water. This all went into remission by the end of 2016 from IVIG (long story and I don't know if it's relevant to your case).
I did notice in your symptom chart (I couldn't get it to copy from your other post) that you have allergies so it couldn't hurt to be tested for some of the mast cell markers if you have a doctor who is willing to order the tests (but it doesn't sound like a priority in your case). Also some of the symptoms that you mentioned (fatigue, hair loss, and weight gain) are CLASSIC hypothyroid symptoms. Although everyone is different and I have never had any hair loss.
Sounds like I need to start doing all these autoimmune tests. Any you feel might be top priority for starters?
The fact that you already have two autoimmune conditions makes me think that it would be important to your case (and even if it finds nothing than you know you can rule out). I guess if I was giving feedback to myself in retrospect, I would have done the Mayo Panel called "PAVAL" earlier b/c then I would have known that I had the LEMS autoantibody (called N-type calcium channel autoantibody) which explained my progressive muscle & breathing weakness and was a game-changer in getting approval for IVIG and the right treatments. It is also a paraneoplastic autoantibody (which means it can be linked to cancer) and it led to me getting lung cat scans for 3 yrs to make sure I did not have cancer (which I did not and in my case it was all autoimmune).
I am also glad that I did the Cell Trend Panels b/c they confirmed that I had Autoimmune POTS (vs. a non autoimmune cause of POTS) and this was even more evidence to my doctor that the only logical way to proceed was treatment for B-cell driven autoimmunity. I am not sure how relevant this would be for you since you don't seem to have POTS.
@Gingergrrl Do you fit into any of these "types"?
Multiple autoimmune syndrome
Technically, my comorbid autoimmune would currently be labeled as "polyautoimmunity". Until I find a 3rd, which would then officially be Multiple Autoimmune Syndrome (MAS) which I guess is you.
Thank you for this article which I also bookmarked to fully read tomorrow. I do fit into "type 3" IF you put LEMS in place of myasthenia gravis (which I do not have) and if other autoimmune diseases count that are not listed? If so, then I have Hashimoto's (autoimmune thyroid), LEMS, and Autoimmune POTS (all in remission except Hashi's). I also had MCAS (mast cell activation syndrome) but there is a lot of debate if that is an autoimmune disease and the jury is still out. But it is definitely a severe allergic over-reaction of the immune system. So I am not quite sure if I fit that chart and if it must be three of the exact conditions that are listed, then I do not.
@Gingergrrl Hey, sorry, did you say you had Parvovirus B19 (PB19)? If so, then that confirms for me that i have got to get tested for that.
I did not have parvovirus and you might be confusing me with someone else? When I had all the viral testing in 2014 & 2015, it did show that I had (low) IgG antibodies to Parvo so I was probably exposed to it as a child but I was never IgM or PCR positive to it.
So, I guess Oxymatrine isn't for me since I've got the autoimmune stuff.
It definitely would not be for you. I did a one-off consult w/Dr. Chia in early 2016 and he said that I was not a candidate for Oxymatrine b/c I had Hashi's (and I did not even know yet that I had all the other autoimmunity). I did all of the other Mayo testing shortly after seeing Dr. Chia but even with Hashi's alone he said that it would not be safe for me.
You might look at tenofovir, but you would have to do this with a doctor, as it requires regular kidney tests. Other than that, you can look at general ME/CFS treatments that are not virus-specific, like B12 injections, LDN, GcMAF, Mestinon for PEM, etc, to see if you benefit from those.
Another treatment you might want to research is high dose IVIG for autoimmunity and for your psoriasis. I don't have psoriasis but my grandmother did. I am not familiar with the type that you mentioned but I know that IVIG can be a treatment for some kinds of psoriasis and other autoimmune skin conditions.
Please let me know if I missed anything that you tagged me about!
