Also saw, @Gingergrrl , that you said you have Hashimoto's in this thread. Seems we have abnormally similar things going on. It's possible we might be on the same path.
I do have Hashimoto's (diagnosed in 2013) and still have it, and as far as I know, I will have it for life. It is unknown what the original infection was that caused the Hashi's but it certainly could have been the severe Mono/EBV that I had in 2012.
I have Hashimoto. Just got my ARUP results back, showing high Echovirus Type 11. Seems like more than just a coincidence.
I've never had a doctor suggest that enterovirus can cause Hashi's (but maybe it can and I am just not aware)? As far as I know, even if you could determine the original infection that led to Hashi's (and other autoimmunity if you have it like I do?), there is nothing you can do to change it except to treat the autoimmunity itself like I did. I am not sure if that is what you are asking and please feel free to send me a PM if helpful.
Actually... now I'm not sure if you are asking about treating the original (past) infection, active infections (if you have them?), or treating Hashi's and other autoimmunity? In my case, the EBV and any other infections were long gone and it all flipped into massive autoimmunity. Once my doctor figured this out, I was able to get the right treatment that led to remission (of my overall illness, not Hashi's, which I'll have for life and take meds for).
Echo 11 was the ONLY EV Type that was abnormal, I'm at 1:640. All other EV Types were normal. I would very much like to hear more from you and see if we have any more connections including symptoms, timeline, severity, other abnormal tests, etc?
In my case the Echovirus 11 titer from ARUP (if I remember correctly from 2015) was never higher than 1:160 and was ultimately considered to be measuring a past infection and was not something that I treated.
You asked about my "symptoms, timeline, severity, and other abnormal tests" and this would literally take pages for me to fully explain! I had several immune system triggers (neurotoxic reaction to Levaquin, then severe Mono from EBV after a minor surgery, and then very extreme exposure to toxic mold & mycotoxins in a prior rental). By early 2013 I had severe (undiagnosed) POTS & Dysautonomia with insanely low blood pressure 80/50 and very high tachycardia in the 160's & 170's on a daily basis. By the end of 2013, I was diagnosed w/Hashi's & POTS.
By mid 2014 I was using a wheelchair b/c I had severe shortness of breath & muscle weakness. It was not PEM by any definition that I have ever seen but it was progressive and it was horrifying. I used a wheelchair for almost 4 yrs b/c of the shortness of breath, muscle weakness & POTS. In addition, in early 2015, I developed severe MCAS & allergic reactions and was hospitalized to try to get the anaphylaxis reactions under control.
Then I had testing at Stanford including blood work sent to Mayo Clinic which discovered I had the LEMS autoantibody (Lambert Eaton Syndrome) which is an autoantibody that blocks the calcium channel and it's functioning. I also tested positive for GAD65 autoantibody and for seven Cell Trend Autoantibodies and was diagnosed w/Autoimmune POTS. I already had the two Hashi's autoantibodies so I then had 11 autoantibodies total which was crazy. So by early 2016, my doctor realized that just about everything I was dealing with was autoimmune and my immune system was having insane allergic reactions to all food in 2015 & 2016 until I started high dose IVIG.
The IVIG stopped the allergic reactions & anaphylaxis by end of 2016 which have never returned. I also started Rituximab mid 2017 and within nine months (by May 2018), I no longer had to use the wheelchair. My muscle strength and breathing strength returned to normal and this has remained in remission. The last thing to go into remission from the IVIG & Rituximab was the remaining POTS symptoms.
In my case, I do not believe that the elevated enterovirus titers had anything to do w/my illness and that the ARUP tests were picking up on a past infection (probably from childhood). All of my doctors suspect that it was the EBV virus (from the severe Mono) that wrecked havoc on my body and led to all the autoimmunity (combined w/the toxic mold exposure).
Out of curiosity, have you done EBV tests? Would be crazy if yours were anything like mine....
I have not done them in many years but at the time they were insanely high titers (much higher than the enterovirus titers in my case). My EBV titers remained high for several years after having Mono (all five of them: IgM, IgG, EA, etc) until they finally became normal (maybe in 2016, I honestly cannot remember). Initially my doctor treated the EBV titers and I took Famvir for 8 months (in 2014 & early 2015 which did not help) and then I briefly tried Valcyte (which I was not able to tolerate even at a micro dose).
If this helps lead me to my cure, I'm going to hunt you down so I can give you a hug, and like a gift basket. Filled with anti-inflammatory supplements... and like, gluten-free snickerdoodles
I know you were talking to Hip but can I have some of the gluten-free snickerdoodles, too, for typing that whole saga? (I am just joking
)
