HealingWell
Search Close Search
☰

IgeneX results

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/22/2021 11:08 PM (GMT 0)
Sent out to IgeneX. All I wanted to really have run was the bartonella Immunoblot, but I figured while I was having it run and jumping through the hoops, I'd do a whole panel and spend the $.

Thought I'd have to go to NJ to mail it, but my Dr informed me that day that NY had just gotten their IgeneX license and we could mail it from there.

Of course, he didnt mention that NYS does not allow you to run the Bartonella Immunoblot. The one test I wanted. What f'ing business is it of theirs whether or not I run a Bartonella Immunoblot is beyond me. Must have their hands in everything in some of these states.

Anyway, I tested negative for all co-infections by IgM/IgG/PCR/FISH(babesia).

I did test positive for lyme IgG bands 18 and 93, negative IgM.
I also tested positive by IgG for TBRF, negative by IgM.

So it seems to indicate some exposure to Borrelia, likely from childhood. Would really like to know what Bartonella would show, w/ my neuropathy and tendon pain always wondered. What to do with the info, not sure given my intolerance to treatment.
Posted 12/23/2021 8:09 AM (GMT 0)
I guess some good news there on the lack of other co-infections.

What a PITA with the NY rules fiasco.

I’ve seen that pattern before.
IgG only but lots of symptoms, and given your immune dysfunction i think you are right to regard it as an active infection. Especially given what we know about borrelia and its ability to change its outer surface proteins to outwit the host immune system.
Tbrf can only be adding to the mix. That seems to come up a lot now that they are testing for it.

Incidentally i have been reading up on biofilms since my microscopy results and ongoing trials with proteolytics.

Many of the experts talk about tissue damage to surrounding tissues by neutrophils detecting the biofilm is foreign and releasing their granules but these do little to the biofilm and instead damage the surrounding human tissue.

Could perhaps be part of the explanation for tendon, and arthritic issues. Borrelia loves collagen and would not grow properly in the lab, even in special media, until they added collagen to it.

I was encouraged to find how many scientists are working on the issue as its present in everything from the oil business, to medical manufacture to water distribution ( as well as medical implants, catheters, cystic fibrosis, COPD, chronic urinary tract infections, diabetic wound infections, heart valve vegetations, c-diff, etc etc - basically all chronic bacterial infections). and the solutions will likely be broadly applicable.

Will they let you rerun the bart test if you post it from elsewhere?

Post Edited (Garzie) : 12/23/2021 4:10:54 AM (GMT-7)

Posted 12/23/2021 11:39 AM (GMT 0)
i suspect you will have read more than me into these mechanisms - but the paper below goes into some detail about neutrophil degranulation - its involvement in chronic inflammatory diseases ( which also happen to be many of the same diseases associated with chronic bacterial infections - asthma, COPD, arthritis etc )

it also describes the contents of the various granules - which unsurprisingly include a large number of enzymes, chemokines and cytokines that degrade collagen and other human proteins - like elastase, MMP-9 (one of the main raised cytokines in lyme) and also signal further inflammation.

https://www.ncbi.nlm.nih.gov/pmc/articles/pmc2876182/

in some ways this would seem to indicate your innate immune system is responding to the pathogens in an aggressive way - which is a cause for optimism - as often the problem is it is so suppressed the disease goes unchecked. But in your case it seems parts of it are in overdrive - doing more harm than good.

the paper mentions a few experimental drugs that appeared to be effective at suppressing neutrophil degranulation, and p38 MAP kinase seemed to be an appropriate target, but from my studies western medicine is in its infancy in modulating immune activity.

"Indeed, treatment of neutrophils with the p38 MAP kinase inhibitor SB203580 led to reduced primary and secondary granule exocytosis in response to f-Met-Leu-Phe."

herbs seem to be superior in this regard - but i think you have had extreme reactions to some in the past

from memory there are herbs that are highly active at suppressing MMP-9
- curcumin ( a slightly tricky one due to absorption issues - but usually very well tolerated )
- knotweed - ( more powerful and broader in its action - but some report strong reactions - can't recall if you have tried this one)
- i am sure there are others - some will be specific for p38 MAP Kinase - but will have to check my notes

anyway - even though I know you are likely well ahead of me on this stuff - my mind made the connections so i thought i would share in case if was of any help.

Post Edited (Garzie) : 12/23/2021 4:42:00 AM (GMT-7)

Posted 12/23/2021 11:49 AM (GMT 0)

dcd2103 said...
What to do with the info, not sure given my intolerance to treatment.

I think it would be beneficial to lower your stress and the amount of time your body is in fight or flight. Shifting what you are doing during a week and rotating different things that help with that, should help your overall system.
Posted 12/23/2021 7:54 PM (GMT 0)
checked my notes and they say two of the best P38 MAP Kinase inhibitors are
-Chinese Skullcap Root
-Cordyceps

both seem some of the easier herbs to tolerate - cordyceps especially - as skullcap has some mild antimicrobial action i think - and both are in my protocol as by trial and error they seem to help me
Posted 12/23/2021 9:42 PM (GMT 0)
Hi Sandy.

Thankyou for your thanks. I am happy to help wherever i can.

I do recall Buhner suggesting echinacea augustofolia for collagen protection.

And its great to hear it helps you.

I would just add a slight caution to others who might want to try it. In that doses for hyaluronidase inhibition are typically pretty high.
Whereas its more common primary use is as a powerful immune stimulant.

From memory it ramps up the innate immune system most and this can cause symptom flares for some people.

If it helps you thats great. And if you tolerate higher doses that is probably a very good sign regarding recovery.

I just thought i should mention the potential for flares for others.

My symptoms increase with only a few drops of tincture and it also seems to play havoc with my gut, so i have put it away for now.
Posted 12/24/2021 6:00 PM (GMT 0)
dcd - Do you suspect you have Bartonella and it just didn't show without immunoblot? That is the test that showed Bart on me.
Posted 12/24/2021 9:07 PM (GMT 0)
Deep_sleep, i had been limiting stress very much for quite a while, meditating in the morning, gratitude journaling. And i was doing better because of it. But after going downhill recently post vaccine (and developing PsA), i've been pretty bad about it. Just feel so awful it makes it hard. Ironically thats when I probably need it the most, but being in so much muscle pain, which i know is autoimmune, kind of saps my will. I have also started tryin to work again as I cant not work forever, which has put stress on me. I definitely need to start exercising (muscle/tendon pain makes it hard) again too, doing cold showers and meditating. I've developed POTS, fatigue and blood pooling in the feet as well. This all happened post vaccine, it's really thrown my immune system for a loop. Or maybe I was going to develop this anyway. But I was doing so much better before that. Ironically, the neuropathy is still improved. Almost like the vaccine triggered PsA and whole new host of issues that operate on a different inflammatory pathway. Who knows, but youre right I need to start reducing stress.

Sandyfeet, I havent tried echinacea. Have always been afraid of that one because it's so immune stimulating. I will, however, look into rosemary. Sounds pretty benign and maybe it can help me.

RW, only test they ran was the Bartonella PCR, which as you know has low sensitivity. So I def needed the immunoblot to at least see if I have past exposure.
Posted 12/25/2021 8:27 AM (GMT 0)
Sent in an email instead.

Post Edited (Deep_sleep) : 12/25/2021 5:28:47 AM (GMT-7)

✚ New Topic ✚ Reply