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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Keeping a master list of all abnormal results in my case

frozenborderline

Senior Member
Messages
4,405
I think, but cant post the exact test, but there was some sort of autoimmunity that made my doc decide to try hydroxychloroquine in 2018. It may have been these sjogrens antibodies which were at least partially positive. I don't have all results in front of me and I just had probably concussion, resulting from being dropped on my head by the doorman at my doctors office... which sucked and my PEM and sensory sensitivity has doubled or tripled
 

frozenborderline

Senior Member
Messages
4,405
I also have had a lot of infectious disease , usually viral, titers tests that I'm not really sure how to interpret if abnormal, but may post later. Certainly at least one was out of range but a lot seemed to not have a normal range, but according to knowledgeable ppl, I think one has to track the patients baseline and compare the titers in time, rather than there being an absolute value. Or maybe Igm compared to igg titers.

I have also had high bilirubin, and high cholesterol. The former was over a number of tests, the latter was only one time, at my doctors office in new mexico in October. Cholesterol is evidently linked to mold exposures in a possibly protective way so they'd the explanation I'm going with.
 

frozenborderline

Senior Member
Messages
4,405
After my initial positive test and my course of antibiotics for lyme, I tested positive on one of the standard tests for lyme at an urgent care, about a month or two after my initial diagnosis. I had no idea about chronic illness and only went to that urgent care bc based on my symptoms and severe brain fog I thought I had another case of acute lyme.. As far as test interpretation goes, they gave me a month of doxycycline, and referred me to an ID doctor who said that the urgent care people were idiots and that I didnt have another case, but that everyone who has had lyme produces antibodies that make them test false positive for anywhere from weeks to years on that test. I'm assuming they're talking about western blot, not elisa, bc Iirc western blot is antibody based and elisa is some type of test for actual bacterial material, like pcr based or something.

I never paid it that much attention bc subsequent tests were negative and subsequent antibiotics after the first ones unhelpful , but there was a positive testresult, and I'd say my only positive one in summer 2016 to october 2017, my first year of illness
 

frozenborderline

Senior Member
Messages
4,405
Maybe in addition to meds I would like to try I should start a tests I would like to have thread. But in short:
  • any test for classic mitochondrial diseases even tho I suspect negative.
  • Sorta wondering about a lumbar puncture for lyme even tho it could be wayy more harmful now that I have cci and pressure issues, and neurological lyme is not in my top ten list of things they could be causing my symptoms.
  • Mastocytosis testing (since high tryptase)
  • Fluoroscopy to test lactate levels in brain like paul Cheney mentions they did in the old days
  • Channelopathy tests
  • Another upright flexion extension mri, but only after I have a plan to recover from it... to look for lower than c2 instability
  • Halo trial. But with caveat that u really have to be ready for surgery bc it will weaken neck muscles a lot
  • Anti-CCP antibodies test ... important to rule out arthritis. No idea why I haven't had it done already
  • Hereditary alpha tryptasemia genetic test--unsure of treatment but seems non quackish, clear about cause at least, sister has mcas symptoms and slightly high tryptase and histamine
  • Whatever heavy metals tests exist and are valid... I strongly suspect mercury at the very least, and lead, and a very distant third, gadolinium. I read a nytimes article about them using fluoroscopy on the bones of a marine to look for accumulated lead when a blood test didnt show it
  • Echocardiogram done while upright to compare to lying down, which is always normal... Cheney says this shows diastolic dysfunction
  • Holter monitor while visiting various extremely toxic areas and pristine areas, with thorough notes. Not for my sake, but for the sake of science. I already know toxins affect my heart, but this would be illuminating for science
  • Repeating tryptase and histamine testing without my antihistamines and mast cell stabilizers. It was high even with th them. Imagine without
  • Urine histamine or methyl whatever histamine or whatever it's called, 24 hrs
  • Prostaglandins
  • Vasopressin
  • Thorough endocrinollgical workup
  • MSH
  • VIP levels
 
Last edited:

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Sounds like you have a mast cell problem, not sure why you want more tests. Just treat it.

A genetic test would tell you have a genetic, or primary, mito disease. A MitoSwab test would give you function.

You could do a Doctor's Data provoked urine heavy metals test. And a comprehensive nutrient test to understand your

It might be useful to start treating your low Immunoglobulins and autoimmunity with IVIG and whatever infections you have and to treat your mast cell issues.
 

frozenborderline

Senior Member
Messages
4,405
Sounds like you have a mast cell problem, not sure why you want more tests. Just treat it.
I do treat it. I treat it intensely. But the reason for more tests is that "mcas" is very different from "mastocytosis" , and while itsunlilkely I have mastocytosis, it has a way different treatment approach than mcas . In every guide to treatment I've seen so far , they emphasize that mastocytosis should be ruled out If tryptase is high and that its treated more aggressively since its clonal?? And sort of like a blood cancer. Like in masto you would be trying to get rid of the mast cells whereas my understanding of mcas is that it's a poorly understood part of a broader innate immune system response to toxins, and that one is calming the mast cells, not aiming at eliminating them. And with regard to hereditary alpha tryptasemia, yeah it doesnt have a stated treatment yet, but if I had it I would be possibly eligible for NIH trials and it would be a simpler explanation for a lot of phenomena I have.

Re having a mast cell pr0blem, that's the problem. Imo the difference between masto and other types of mast cell activation disorders may be essential for treatment, one of them involves mast cells being overproduced in a way that involves an error or malignancy, reacting constantly to possibly harmless triggers, ,such that one wants to aggressively destroy the cells; the other involves mast cells possibly reacting normally to noxious triggers.
 

frozenborderline

Senior Member
Messages
4,405
It might be useful to start treating your low Immunoglobulins and autoimmunity with IVIG and whatever infections you have and to treat your mast cell issues.
Do you think Ilene Ruhoy would do this. Because dr levine will not , well she won't respond to emails or calls more 5han once a month, but regardless she won't. And it's over my pcps head.
 

frozenborderline

Senior Member
Messages
4,405
Here's a quote from someone knowledgeable about the subject off forum, on why he thinks I should figure out whether I have mcas, allergy, or mastocytosis:
"elevated tryptase could be blood cancer

mastocytosis is a kind of blood cancers.

another one would be mast celll leukemia, but you'd know by now

idk enough about tryptase/mcas, but wouldnt you want to at least rule out clonal disease?

masto is not necessarily progressive

also you are jumping to conclusions. why mcas - it could be some allergy."
 

frozenborderline

Senior Member
Messages
4,405
But basically, while I'm happy with the idea that cci and brainstem inflammation and mcas cause most of my symptoms, the deeper explanation for the immune dysfunction and feedback loops that caused the problem in the first place seems to be (oversimplified ) that:
The complex, adaptive immune system failed me--either from birth or was disabled from lyme. Empirical proof (my consistently low IgG , total and subclasses, and my low IgA).
The failure of the more targeted immune system , that has antibodies, etc , and is more like [if we need to use clumsy war analogies while concussed and sleep deprived] snipers, or targeted ICBMs --or maybe iron Dome defense system ?? , leaves the body needing the innate immune system, which is less complex and had more friendly fire potential. Mast cells are part of the innate immune system but only part of it, I need to learn more, there are other white blood cells part of it, I believe glial cells are also part of it... and they all dump stuff like histamine , glutamate, cytokines , etc in a sort of paracrine fury , like they are arditi or the defensive version of them... or like they are defending a fort after the snipers have failed to pick off the enemy from a long range and they are left with pistols (inaccurate at long range) and hand to hand combat, leaving lots of bloody detritus, lead, and in the real world, non analogy version cellular detritus and mast cell mediators , cytokines etc
 

5vforest

Senior Member
Messages
273
@frozenborderline It definitely sounds like there is a lot more going on than just the tick bite that started it all. But have you been tested for other tick borne infections? There are others besides Borrelia that would not respond to the same antibiotics that you have mentioned taking in the past.

It can be expensive to test for all of them if insurance does not cover it, but there is a chance you could get financial assistance with https://www.lymetap.com/
 

frozenborderline

Senior Member
Messages
4,405
@frozenborderline It definitely sounds like there is a lot more going on than just the tick bite that started it all. But have you been tested for other tick borne infections? There are others besides Borrelia that would not respond to the same antibiotics that you have mentioned taking in the past.

It can be expensive to test for all of them if insurance does not cover it, but there is a chance you could get financial assistance with https://www.lymetap.com/
I'm just not sure from everything I've researched how accurate all these private tests are for those confections are and stuff. It just seems like the same doctors who promote them also promote the discredited igenex test. I know not all private labs or things you have to pay for are quack things but I did not get a good enough understanding of why the LLMDs are correct about coinfections and the conventional doctors are wrong

I also know people who have spent a lot of time and money on that route only to get worse and be told "its just herxing" even when it is nothing like a jarrisch herxheimer reaction ... Even some well regarded me/cfs docs have pushed those treatments and I'm confused why Idk
 

5vforest

Senior Member
Messages
273
I'm just not sure from everything I've researched how accurate all these private tests are for those confections are and stuff. It just seems like the same doctors who promote them also promote the discredited igenex test. I know not all private labs or things you have to pay for are quack things but I did not get a good enough understanding of why the LLMDs are correct about coinfections and the conventional doctors are wrong

I also know people who have spent a lot of time and money on that route only to get worse and be told "its just herxing" even when it is nothing like a jarrisch herxheimer reaction ... Even some well regarded me/cfs docs have pushed those treatments and I'm confused why Idk

Yeah, unfortunately there is a lot of bad science in the Lyme world and there are a lot of patients who end up repeating things that are not sound, eg calling any adverse reaction a herx, etc

you don’t have to use a specialty lab, but the two coinfections that would not respond to doxy would be Babesia and Bartonella. The major labs have antibody tests for each, but there are different strains that might not be picked up. A pathologist would theoretically be able to see these in a blood smear, but in reality they won’t take the time needed to manually examine your red blood cells. The advantage of iGenex would then be that they have a FISH test for both bartonella and babesia which is a flourescent probe that makes it more easily visualized under a microscope. I am not sure about Bartonella but I know the Babesia FISH has been validated with blind samples. I can dig up the article if you want.

I tend to agree tho that there are many bacterial infections that aren’t even worth testing for, if you have already taken antibiotics that theoretically would have treated them.

As for the possibility that you have a chronic Borrelia infection, we don’t have to go into that...
 

frozenborderline

Senior Member
Messages
4,405
you don’t have to use a specialty lab, but the two coinfections that would not respond to doxy would be Babesia and Bartonella. The major labs have antibody tests for each, but there are different strains that might not be picked up. A pathologist would theoretically be able to see these in a blood smear, but in reality they won’t take the time needed to manually examine your red blood cells. The advantage of iGenex would then be that they have a FISH test for both bartonella and babesia which is a flourescent probe that makes it more easily visualized under a microscope. I am not sure about Bartonella but I know the Babesia FISH has been validated with blind samples. I can dig up the article if you want.
I actually think at one point a relatively open minded urgent care doc ran tests for that when I was initially having my post Lyme troubles ... And negative

What Abx do u use for those anyway. I also tried amoxicillin and some nasty ones ending in azole
 

5vforest

Senior Member
Messages
273
First-line Babesia treatment is Atovaquone + Azithromycin.

Bartonella is usually Rifampin.

There are also herbal options that can be effective.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Here's a quote from someone knowledgeable about the subject off forum, on why he thinks I should figure out whether I have mcas, allergy, or mastocytosis:
"elevated tryptase could be blood cancer

mastocytosis is a kind of blood cancers.

another one would be mast celll leukemia, but you'd know by now

idk enough about tryptase/mcas, but wouldnt you want to at least rule out clonal disease?

masto is not necessarily progressive

also you are jumping to conclusions. why mcas - it could be some allergy."
That is not a knowledgeable answer. You might look at www.mastcellmaster.com www.mastattack.com, papers by Lawrence Afrin and this:
https://pubmed.ncbi.nlm.nih.gov/32324159/
 

frozenborderline

Senior Member
Messages
4,405
Maybe you would find more help on a forum with others with this hereditary problem?
I don't think so, as I don't think its very distinct from me/Cfs , I'd guess a lot of me/CDs patients have this gene. And it explains most me/cfs symptoms. But not enough is known about treatments for it to provide more specifics there than mcas or me/cfs
 

frozenborderline

Senior Member
Messages
4,405
Well, I was diagnosed with occult tethered cord but unlike cci it doesn't require an abnormal result on an MRI or formal test, just clinical diagnosis.

Also something grew from my urine in culture after I noted Prime painin bladder but the ID doctors in hospital thought urinalysis was normal so they didn't treat this . but my pcp says urinalysis isn't totally normal either and has some blood .
 
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