Potential Lyme Diagnosis?

hi Eddie

it is reasonable and understandable to be wary and confused given the conflicting information out there

it should be clear to you by now there are two schools of thought in the infections diseases world - you should also be able to see that most of the neigh sayers are members of or employed by large institutions with vested interests - some of which have been publicly acknowledged as conflicts of interest.
most of those that support the idea of difficult to diagnose and difficult to treat chronic infections are engaged in small private practice or research projects aimed at trying to help those of us with these conditions - and while they do of course also have a vested interest - i tend to think there are much easier ways to make a living if money is what you care about.

you will also see a large number of accounts from people here who got better with appropriate treatment for diseases which conventional doctors denied or misdiagnosed.

you will sense the frustration of members who have been through similar situations and are angry at the inappropriate treatment they have received and the dramatic impact on their lives that this has resulted in - none of this is personal or aimed at you - just frustration that the system does not work better than it does.

i think you have been given good advice so far - only you can decide which is the right path for you.

the early stages of diagnosis are challenging - so much information to get your head around - and so much of it clashes with what we are told elsewhere - but do hang around and ask questions - we are a helpful bunch.

Did a mycotoxins test. Anyone fimiliar with these results? Are they bad?

https://imgur.com/a/LaKfjQM

Eddie353 said...
Did a mycotoxins test. Anyone fimiliar with these results? Are they bad?

https://imgur.com/a/lakfjqm

YES. You definitely have mycotoxins - almost all of them. I am not at all surprised considering you personally remodeled a bathroom that had previous leaks. The Trichothecenes group includes toxins produced by Stachybotrus, aka “toxic black mold.” That is one of the worst and is found where leaks have occurred - i.e. that bathroom you remodeled.

You are positive for Ochratoxin A, Trichothecenes Group, and Gliotoxin. You have an equivocal for Aflatoxins. The only one that was considered negative was Zearalenone, and you had a lab value for that one. You have been exposed to a lot of species of mold and many mycotoxins.

Gliotoxin is VERY immune suppresive and basically shuts down glutathione production. Glutathione is your master antioxidant that enables your body to remove toxins.

When you remodeled the bathroom, you very likely spread the mold spores airborne where they could then travel on air currents and through the duct system all over the house. I’m guessing you did not completely remove and replace ALL the materials - including drywall, insulation, wood framing, and clean to remediation standards.

You basically will now need to either deal with mold contamination in the house or move to a house that hasn’t had any water damage and tests very low for mold. Let us know if you have more questions or need help. Some of us here, myself included, have been through this.

If you plan to stay in the house and deal with the mold and contaminated air/surfaces, let us know what part of the country you’re in. We can recommend a good inspector/tester.

If you decide to just move, please ask about possessions. It is often recommended to discard most or all possessions in the case of Stachy. There’s a lot you need to know about this.

Also, dealing with mold/mycotoxins should take priority over treating Lyme/co. Lyme/co treatment can completely derail a body that is already overwhelmed with mycotoxins and unable to detox.

Post Edited (WalkingbyFaith) : 9/9/2021 7:32:42 AM (GMT-6)

I don’t know that I would agree with what skinny joe said. My understanding about mycotoxins based on what doctors have told me is that when normal, healthy people are exposed to mycotoxins, their bodies efficiently remove the toxins. They don’t test positive. You can have a number of people in the same house and the unaffected ones won’t have positive test results. That’s my understanding about it.

Are there other people in the household? Did any of them get tested?

WalkingbyFaith said...
I don’t know that I would agree with what skinny joe said. My understanding about mycotoxins based on what doctors have told me is that when normal, healthy people are exposed to mycotoxins, their bodies efficiently remove the toxins. They don’t test positive. You can have a number of people in the same house and the unaffected ones won’t have positive test results. That’s my understanding about it.

Are there other people in the household? Did any of them get tested?

When I corresponding with the lab director at great plains on provoking. Buried in his response was "Only about 2% or less of our mycotoxin samples have all the results in the normal range."

Does that mean the other 98% of the people are suffering somehow from mycotoxin exposure? I would venture a guess no. Their body is churning along clearing it as it should.

Anyone been to Lyme Mexico? Im considering going. Apparently i might have cirs, lyme and maybe bart. The lyme doc said my lyme symptoms are atypical.

Any input on this place? Looks like i would be there 4 weeks and do IV abx, plasmapheris, and a bunch of other things to support the immune system.

Eddie the bands on western blot and positive / negative results on Elisa come and go naturally for many people with Lyme - it has little significance other than the infection is doing what it does and interfering with the normal functioning of the immune system, I'm afraid.

ref the protocol

Doxy has activity for Lyme and some activity against Bart - but not normally curative on its own

MB has good activity for Bart - but again normally used in combination with with a macrolide and/or Rifampicin

ivermectin has its uses - and i take it myself for its immune modulating effects for lyme - but i have not seen anything in the literature suggesting it has direct activity for either Lyme or Bart - i wold be interested if you or your MD have seen anything like that.

ref stomach issues / candida = note Bartonella is well known for causing stomach issues as well as many other gut related symptoms - ref Burrascano's guidelines, bart induced colitis, bart induced cholestasis etc etc and OAT test could give some insight into whether there is fungal overgrowth in the gut or not.

what type of hyperthermia treatment did you do
-general anaesthetic/107 degrees/ 4hrs with antibiotics - like the German clinics
or
-42 deg C / 30mins - milder sessions

Eddie353 said...
Hi Garzie,

Regarding the bands. Ive been told once you have truely cleared and eradicated an infection, even the igg will permanently disappear.

Regarding your question of hyperthermia.

Full body hyperthermia, except head ofcourse. No anaesthic. No antibiotics. We reached 107.2 induced fever. 1 hr and 50 minutes in the chamber.

nope - the igg can remain for years -

but because they can come and go in lyme patients anyway - it becomes v hard to know if they have gone because the infection has gone - or just the antibodies have disappeared for a while.

You will read lots of accounts of people on here who were negative for years then become positive or visa versa. Sometimes showing up only after a particular treatment and sometimes going away again but with symptoms remaining.

there is no test that can prove lyme has been eliminated as yet - unfortunately

many LLMD's seem to believe its not possible to eradicate completely - but only to get levels down to a level that the immune system can handle and therefore no symptoms - but since there are no tests that can reliably tell the difference between small numbers and none - its just opinion at this stage.

107.2 without anaesthetic - wow! - that sounds INTENSE!
as far as i know - the German clinics will not do it without anaesthetic as they dont think people can tolerate it .....

Post Edited (Garzie) : 11/21/2021 11:56:59 AM (GMT-7)

Ok, so first off, IgG bands can last for years, some people have them for life. IgG is secreted by plasma cells which can live for years. You can lose bands, and that seems to be happening with Covid, which surprises me how quickly it seems to happen and makes me a bit suspect something else is going on, but Lyme they can often hang around for years. Either way, it would be odd to lose the bands that quickly. I think the problem is Vibrant. I consistently had the same bands through MDL labs and stony brook (2x each), and then we went to vibrant and i had completely different bands, made me think the whole test is garbage.

Second, and people are probably sick of me saying this on this board, but you likely have some form of demyelinating polyneuropathy, either small fiber or large fiber i'm not sure, likely the former. But it just blows my mind the amount of people who come through here with this issue, and their LLMD tells them to eradicate the lyme and it will go away, and it doesnt or gets worse. Sometimes it does, but often you have to treat the immune system too. The treatment, the only treatment for this, is IVIG. How do these LLMDs not know this? I just cant fathom it. It's starting to anger me.

Post Edited (dcd2103) : 11/21/2021 11:58:35 AM (GMT-7)

i don't know much about SOT Eddie

just some anecdotal reports i have come across - others here may know more

ref the protocol above if it were me and i suspected Bart - i would want to add a macrolide and maybe rifampicin - but your LLMD may want to go step by step - rather than go al in at once

Dcd makes a good point about the neuropathy like symptoms - most people have this to some degree with Lyme and bart especially it seems - for some it just flares and flares when you try to treat with anti-microbials - for others its manageable.

Ive had a skin biopsy for small fiber neuropathy, completely normal. Emgs and NCS suggests no nerve damage at this point.

Regardless even if there is nerve damage, something caused it, likely Lyme or Bartonella. Once those are in control, ivig or stem cells would be options. But i think it’s important to get rid of the culprit first.

dcd2103 said...
Ok, so first off, IgG bands can last for years, some people have them for life. IgG is secreted by plasma cells which can live for years. You can lose bands, and that seems to be happening with Covid, which surprises me how quickly it seems to happen and makes me a bit suspect something else is going on, but Lyme they can often hang around for years. Either way, it would be odd to lose the bands that quickly. I think the problem is Vibrant. I consistently had the same bands through MDL labs and stony brook (2x each), and then we went to vibrant and i had completely different bands, made me think the whole test is garbage.

Second, and people are probably sick of me saying this on this board, but you likely have some form of demyelinating polyneuropathy, either small fiber or large fiber i'm not sure, likely the former. But it just blows my mind the amount of people who come through here with this issue, and their LLMD tells them to eradicate the lyme and it will go away, and it doesnt or gets worse. Sometimes it does, but often you have to treat the immune system too. The treatment, the only treatment for this, is IVIG. How do these LLMDs not know this? I just cant fathom it. It's starting to anger me.

Eddie353 said...
Ive had a skin biopsy for small fiber neuropathy, completely normal. Emgs and NCS suggests no nerve damage at this point.

Regardless even if there is nerve damage, something caused it, likely Lyme or Bartonella. Once those are in control, ivig or stem cells would be options. But i think it’s important to get rid of the culprit first.

dcd2103 said...
Ok, so first off, IgG bands can last for years, some people have them for life. IgG is secreted by plasma cells which can live for years. You can lose bands, and that seems to be happening with Covid, which surprises me how quickly it seems to happen and makes me a bit suspect something else is going on, but Lyme they can often hang around for years. Either way, it would be odd to lose the bands that quickly. I think the problem is Vibrant. I consistently had the same bands through MDL labs and stony brook (2x each), and then we went to vibrant and i had completely different bands, made me think the whole test is garbage.

Second, and people are probably sick of me saying this on this board, but you likely have some form of demyelinating polyneuropathy, either small fiber or large fiber i'm not sure, likely the former. But it just blows my mind the amount of people who come through here with this issue, and their LLMD tells them to eradicate the lyme and it will go away, and it doesnt or gets worse. Sometimes it does, but often you have to treat the immune system too. The treatment, the only treatment for this, is IVIG. How do these LLMDs not know this? I just cant fathom it. It's starting to anger me.

Youre having nerve pain, you have neuropathy. The biopsy for SFN will only pick it up after considerable damage has been done.