MISTAKES I HAVE MADE in my journey--what about YOU??

[grapes]

@grapes Which test would you recommend for amino acids? Anything available in Europe?

And..who is the guy that improved 80%? Any thread here about his approach?

BTW: seem to have relief from anxiety & depression by supplementing GABA, Tyrosine, 5-HTP, Tryptofan, B-3 and Inositol. According to Trudy Scott's book.

@ljimbo423 About choline (PC). Dr. Walsh says to avoid it if undermethylator - along with Mangan, B-5 and folate/5-MTHF. Has to do with acetylation vs methylation of DNA histone tails, hence affecting epigenetics.

@JasonUT OAT?

Hi Jason. The guy who said he improved 80% with amino acids is on another thread...but can't remember where at the moment. If I do, I'll post. Pretty impressive.

OAT stands for Organic Acids Test. By far gave me the most valuable information about myself.

 

[grapes]

@grapes Which test would you recommend for amino acids? Anything available in Europe?

I forgot to answer this. I did Doctors Data, but that's for the US. You'd need to find one in Europe, as the urine has to arrive cold.

 

[grapes]

I made a mistake above. It was NOT Doctor's Data that provided my enzyme test. It was this: http://www.truehealthlabs.com/Amino-Acids-Urine-Test-Great-Plains-Labs-p/gpl_amino_acids.htm

AND BY THE WAY, I want to add another mistake I've made: not getting treatment quick enough when I was massively exposed to mold a few years ago. It's that incident that led to all these problems I am having.

 

[Timaca]

I do believe I am dealing with multiple reactivated pathogens. But, as it turns out, I'm also dealing with multiple food intolerance issues. I had no idea this was part of my problem until I did an elimination diet a few years ago. While I'm still working through which foods do and don't work for me, I am sorry I didn't try the elimination diet sooner.....

 

[grapes]

TO THOSE READING THIS STRING: I need to announce something. Because of Hip on this website, I found out that instead of having ME/CFS, I have CIRS, or CHRONIC INFLAMMATORY RESPONSE SYNDROME. The symptoms can be very similar to ME/CFS, but the treatment is different.

My clear CIRS is both the result of acute mold inhalation I had a few years ago, plus the fact that I have a mutated gene, the HLA-DRB, which means my immune system can't totally get rid of the mold on its own. Thus, that mold in me has festered and wreaked havoc.

And I think this is important to tell you...because it's clear that some people who come on this forum "may" have CRIS rather than ME/CFS. I personally didn't have flu-like symptoms when I inhaled all that mold as you might with a virus, but some do. Instead, I had a very over-reactive immune function for months and I was exhausted to the bone 24/7. Had to have mold allergy shots to recover.....and I thought I did slowly recover...but I didn't...because of that gene. It continued to cause problems, including messing up my mito alongside growing methylation issues.

There are certain tests to do to see if one has CIRS. They include:

• MSH (aka melanocyte-stimulating hormone/anti-inflammatory hormone made in hypothalamus--mine was very low).
• C4a (immune system marker which reflects inflammation--mine was very high)
• C3a (also related to immunity--mine was fine--a fine C3a with a high C4a points to mold)
• MMP-9 (immune system marker--mine was very high)
• VIP (aka Vasoactive Intestinal Polypeptide/important down-regulator of inflammation--mine was too low)
• HLA DRB--determines if you are part of 24% of population that gets very sick and can't get rid of mold on your own--mine was positive)

There are others. I also have had a high Reverse T3 (RT3) for awhile now--that is the inactive thyroid hormone that comes from T4 when on has chronic inflammation or health issues. To counter it, I've had to be on T3-only.

And by the way, I had GOOD levels of ferritin and CRP--both markers of inflammation, yet the above tests told the truth of my chronic inflammation due to lingering mold.

You can read more about CIRS, the tests and more here: http://www.survivingmold.com/docs/Berndtson_essay_2_CIRS.pdf

I know that some of you will have clear ME/CFS, but I suspect there are going to be some who actually have CIRS since the symptoms can be similar.

 

[grapes]

I would be wary. Most of us have found what we 'really' have, now, multiple times...

Nope, this is the real deal. Confirmed in multiple ways. And turns out I'm not the only one. A guy named Ryan reported that after 10 years of misery with the CFS diagnosis and very similar in symptoms, it turned out to be CIRS, and in five months of treatment, he's totally well. So just wanted to bring this up, just in case this might end up being true for one person reading this...

 

[Manganus]

I'm rather stubborn. So I've taken (prescribed) medications for much longer than I ought to have done. I did realize that they didn't have the expected effect. But I was stupid enough, again and again, to follow the prescription ...in some kind of try to convince the physician in question.

(Chiefly SSRI and other psychiatric pills supposed to mitigate pain.)

I have been far more successful finding things that bring some relief and improvement through my own research and trial and error experimentation.

Haven't we all?

 

[ebethc]

Definitely doing aerobic exercise on days I felt 'ok' and continuing even after experiencing and recovering from PEM for years.

Taking immune modulators that caused a relapse.

why do you think immune modulators caused a relapse? which ones did you take?

 

[Mij]

I suspect IRIS (Immune reconstitution inflammatory syndrome). Latent viruses such as HHV6 and EBV reactivated. I was a mess.

I took Transfer Factor and Immunovir. When someone tells you, "you need to feel worse before you start to feel better", don't believe this.

 

[ebethc]

I suspect IRIS (Immune reconstitution inflammatory syndrome). Latent viruses such as HHV6 and EBV reactivated. I was a mess.

I took Transfer Factor and Immunovir. When someone tells you, "you need to feel worse before you start to feel better", don't believe this.

The problem is that sometimes it's true and sometimes it's not, so it's hard to parse.... IRIS is a new term for me.. How do you know viruses were reactivated? High IgM?

Do you know if immune modulators are better for AI vs immune deficiencies?

thanks

 

[Mij]

@ebethc . . . yes highly elevated IgM on both and high WBC within one month of taking them. One day I was ok and next my legs almost gave out on me on the street. I couldn't walk for 3 months.

I was rx'd immune modulators because my CD4, CD8 etc were all below normal range.

 

[JAH]

I thought I'd get better