Possible ME/CFS Subgroup -- Cardiac

[TenuousGrip]

One day I posted this on 'the other forum,' intent on doing the same thing here. But I've been struggling. Since I didn't want to lose the potential value of the hyperlinks I created over there, I'm just going to post a link here and hope that a) that's okay, and that b) the link works.

https://www.s4me.info/threads/eleva...ol-study-julia-newton.1745/page-3#post-137841

tl:dr - I've had immune problems my whole life. Immune problems are almost surely at the cause of a severe adverse drug reaction that I suffered in December 2013. Nine months later I had sudden onset symptoms that looked a lot like ME/CFS but had significant cardiac features. About 4-1/2 years after that sudden onset day, I have been diagnosed with severe (terminal) heart issues -- Restrictive Cardiomyopathy and WHO Group II Pulmonary Hypertension.

The almost certain cause was the December 2013 drug reaction.

I'm headed back to the Minnesota Mayo Clinic in a couple of weeks for yet another evaluation but it doesn't seem there are any treatment options.

But I think some of us may actually be suffering from a very rare and easily/often/usually missed cardiac issue.

 

[Wolfcub]

I wish you well @TenuousGrip and hope something can be found to help you. I am sorry you are suffering like this.
What was the drug which caused such a reaction?

 

[Mary]

Hi @TenuousGrip - I read your post on the "other" forum. That's a horrific drug reaction - I'm so sorry you are going through this. (BTW, it's fine to post the link here)

I have no idea if this will help you with your particular cardiac issues, but thiamine has been shown to help with certain types of heart failure: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3865826/ It might be worth an experiment to see if it could help.

My brother-in-law, who has heart failure ( and I can't give you the specifics as to what type), had more energy and stamina after starting to take thiamine. Thiamine has helped my energy too, though I don't have major cardiac issues. Though I very likely have some of the normal ones associated with ME/CFS - probably low blood volume. Several years ago I had abnormal impedance cardiography results which I believe are typical of ME/FS.

I know I'm dealing with different cardiac issues than you, but just wondered if thiamine might be of some benefit to you as well.

 

[Mary]

@TenuousGrip - FYI, we already have a forum subgroup called "Autonomic, Cardiovascular and Respiratory" under Symptoms, Symptoms and Treatment.

 

[Gingergrrl]

One day I posted this on 'the other forum,' intent on doing the same thing here. But I've been struggling. Since I didn't want to lose the potential value of the hyperlinks I created over there, I'm just going to post a link here and hope that a) that's okay, and that b) the link works. https://www.s4me.info/threads/eleva...ol-study-julia-newton.1745/page-3#post-137841

It is so good to hear from you @TenuousGrip and truly cannot thank you enough for all of your kindness and support in the past. I just read and "liked" your thread (even though I do not post on the other board) and the link works. I am so sorry to hear about how much you are still suffering.

The almost certain cause was the December 2013 drug reaction.

I agree.

I'm headed back to the Minnesota Mayo Clinic in a couple of weeks for yet another evaluation but it doesn't seem there are any treatment options.

I am praying for you that they will be able to help you and the research that you have done on your own situation and condition is incredible.

But I think some of us may actually be suffering from a very rare and easily/often/usually missed cardiac issue.

I also agree. I think there are many conditions that "mimic" ME/CFS or that in the early stages actually meet full criteria for ME/CFS but then later another cause is found. Is it a sub-group or misdiagnosed group? I am not sure, and definitely do not want to side-track this thread, but it is something that I have wondered about often.

I wish you well @TenuousGrip and hope something can be found to help you. I am sorry you are suffering like this. What was the drug which caused such a reaction?

@TenuousGrip has shared in the past on PR, and also in his link, that the drug was Trileptal. Here is part of what he wrote in the link (and the bolding is mine):

In December 2013 I was given an Rx of Trileptal (anticonvulsant) to treat nerve pain in my eyes. I had a severe Adverse Drug Reaction called DRESS Syndrome. It wasn't treated (normally, IV steroids and/or IVIG). After a few months recovery I flew to Minnesota to be seen at the Mayo Clinic. They declared me fortunate and unfortunate and sent me home.

@TenuousGrip I was curious, is IVIG considered an established treatment for DRESS Syndrome? As you know, I had a neurotoxic reaction to Levaquin in 2010 (that nearly tore my right triceps tendon and was the true beginning of my illness). I searched for treatments for about a year and one allergist/immunologist actually mentioned IVIG but I did not pursue it at that time (and actually did not even know what it was at that time).

I know this is truly a long shot, but is there any chance (no matter how slim) that IVIG could still be of benefit to you now? I did not have DRESS Syndrome, but I had a cascade of immune triggers starting with Levaquin, then Mono/EBV, then toxic mold exposure, etc, and my main symptoms were cardiac, pulmonary, autonomic, and neuromuscular. I did not start IVIG until July 2016 (almost 6.5 years after the initial injury from Levaquin) but it was life changing. I am throwing it out there but please disregard if you've already discussed with your doctors and it would not be useful.

I am praying that something will be found to help you.