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I am not aware of anything you can take related to your high CMV and EBV test results that would help your heart. It sounds like you already had all of the right testing done, regarding how your heart functions. I assume you had an echocardiogram? I am not familiar with a heart MRI.

Why do many of us suffer from heat and cold intolerance? Do you feel politics has played a role in holding back ME research? If so, then what suggestions do you have to move forward? What keeps you motivated to continue your mission to help PwME? What can PwME be doing everyday to support new...

Regarding the timelines, then collectively what do you propose we do about improving them? Are you involved in fundraising, awareness, or research? I am involved in clinical research mainly, and my age is a barrier to most scientific research studies. I attended three ME Millions Missing...

Sometimes Jen couldn’t move. But her condition seemed to be intermittent because when she went to the desert she seemed healthier.

Thanks for the info. I have acid issues, so does my Father. If I try them out, it would only be a short term trial.

I was just curious. I don’t show any signs of iron imbalance either. I am heterozygous for the HFE C282Y Mutation. 50% of my MDs patients are heterozygous for a HFE gene mutation (C282Y or H63D). Roughly 10% of the population are HFE heterozygous.

I think H1 are the standard allergy antihistamines.

Agree, that tachycardia is a downstream effect, not the cause of OI.

Hi @Woolie Have you been tested for hemochromatosis (HFE)? Since this thread is public facing, feel free to PM me if this is private info.

Do you have access to the full text? I am curious if she was CRP positive.

That is an impressive start to your (n=1) experience, we’ll done! I may ask my MD for a Zantac Rx, especially if it takes care of both H2 and IL-6. I will let you know, if I start. Edited: looks like it’s OTC. My CRP was once elevated, but no longer is. I think that was your curiosity.

Correct. But the relationship between exercise and Histamine was interesting, since you may be gaining a benefit in that way too. Have you previously tried H2 blockers? I understand it’s difficult to gain helpful info from studies that are done on healthy people. This topic has peaked my...

A single dose of histamine-receptor antagonists before downhill running alters markers of muscle damage and delayed-onset muscle soreness. https://www.ncbi.nlm.nih.gov/pubmed/27493198

I have labwork dating back to when I was healthy, and can see the sharp contrast of healthy vs ME for calcium, sodium, and potassium. So I was curious if @ahimsa had low values in her labs too.

How many minutes can you walk now?

It’s listed on their website.

We call it Tramadol in the US

These are the wheels Jen Brea owns, the KDSmart Chair. https://kdsmartchair.com/ If you contact the company, they can fill you in on the gently used, “pre-owned” models , offered at a significant discount. Some have never been used, just people opened up the box, didn’t like it, and returned...

Yes, for me those values are relevant. Since we are having a discussion, I assumed it would not harm anyone to look at their lab work. I must be confused, who said OI in ME has anything to do with low blood volume? Please define low volume.

I think looking at your recent lab work, done with fasting, is a good place to start to understand OI with ME. Are you usually low in sodium and potassium? How about calcium? I feel treatments need to be customized for each person, under the supervision of your doctor.