How to Know When to Stop Treatment & How to Prevent Relapse

Dr MR released an article with his opinions on these questions here; https://www.treatlyme.net/guide/finished

He also talks about CD57, which I found interesting. He filled in some missing information for me. I was not aware that the normal range was 150+. Highest mine ever was was in the 80’s. Lowest was 30’s.

Dr Marty Ross:

“If a person can remain symptom free for two years after treatment, it is safe to say they are cured.”

I guess I can say I’m cured.
I’ve been symptom free for over two years now.

I am now exercising (bike riding/tennis) to get my muscle tone back (I had lost it with Lyme and CO’s)

More:

1)Albumin (body structure protein) and globulin (immune cell protein) together make up part of the "total protein" test too. So those levels can be low.

2)White Blood Cell count is also usually low.

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WBF-

" IgA was 72 (flagged LOW), range (87-352)"

Astro- watch this, test several times a year to get sold basline or up/down? need to know

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WBF - "So, what did the FMD say about treatment for hypogammaglobulimia?"

Astro- He said continue to test these from whatever clinics I go to in the future (insurance covered/conventional) and if no improvements,to seek an Immunologist, which is a rare Dr. That was seven years ago.

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I first went to two of them about six years ago. They cross-tested with different lab testing agencies. Results were the same. I dont treat it yet My IgG is way under the range.

I also went to a blood cancer Dr, as this can have similar lab results sometimes. (no cancer).

Treatment is IV immunoglobulins, IVIG in my case. This requires documented insurance approval: with out, the full price is 20K every six weeks. Im not "sick" (most are with this condition), so I dont treat it.

I survived COVID, so the low IgG I have seems to be strong at least. Immune cells (all types) are tested in volume NOT strength.

(Edit/note: my CD 57 has been below 30 probably for ten years, even though my symptoms improved. Before, then, I never had it tested, nobody would so we don’t know what our baseline was. I should get it tested again just to see how well it still correlates with the other immune cell test that I do)

As you can see, this is important, yet so many ignore to do further testing BEYOND CD-57.!!!!!!

Post Edited (astroman) : 7/4/2024 7:29:02 AM (GMT-8)

Fronton said...
My new doctor tracks CD57 throughout treatment. It has been very interesting to observe actually. In my early Lyme days, my CD57 was below 100 (80s). Last year when I was finally diagnosed through testing with Bart, TBRF, and Rickettsia and we started to target the co-infections, every three months I would get labs done that included CD57. As my symptoms improved, my CD57 over the course of 9 months went from 105, 160, 195, and now it is at 205 and I've cleared those coinfections. Really a text book example of at least the early CD57 theory.

Good for you, you have a normal operating immune Cells!

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I appreciate MR's commitment to sharing information for free, offering both pharmaceutical and herbal protocols, and organizing information well with accessible language to help as many people as possible. I often recommend his website as a starting point for folks recently diagnosed with TBD.

But I agree with others that he's not always 100% correct. (To be fair, how could he be? There are no decent studies on most of the things he's trying to fix!)

In this case, I can't concur that "cure" happens simply because someone is symptom-free for two years. I was symptom-free for seven years - through deaths in the family, traumatic childbirth, surgery, a stressful job, mono, the flu, etc. - but I got worn down over time, and symptoms came back gradually until I was once again undeniably disabled. I feel like describing people as "in remission" makes more sense. Remission can last a lifetime! But It's not guaranteed. And because Lyme is so multi-factorial, and because there's no test that indicates remission/cure/microbe-free-ness, it seems overly confident to proclaim that a permanent cure has taken place.

I suppose there's no harm in people thinking of themselves as cured, though. If they relapse, they can just assume it's a new infection, and at least they had a period of time feeling healthy in the interim!

As for CD57, I never had mine tested when I was very ill the first time, nor any other measures of immune function. (I was very ill for two years in my early twenties, then was symptom-free for seven.) And of course I was never tested when I felt fine. So I often wonder how long I have had low immunoglobulin subclasses, whether my relatives have such deficiencies, how many healthy people do who will never be tested, etc.

saraeli said...
And of course I was never tested when I felt fine. So I often wonder how long I have had low immunoglobulin subclasses, whether my relatives have such deficiencies, how many healthy people do who will never be tested, etc.

My thoughts exactly.

Hypogamma (under class IgG) is currently thought to be a 1 in 30,000 rarity.

Online info dated 15 years ago said 1 in 50,000 were discovered to have this deficiency.

I'm guessing its more common than that. These immune cells are rarely tested in anyone with out cancer or AIDs.