Autoimmune Diseases Caused by Bacteria?

[Daffodil]

maybe this is all drivel...just grasping at straws here looking for hope...again

 

[Daffodil]

I know a woman who has lived without CFS because she treated early and needs 25 g of IVIG a month to live normally. I guess if the disease was caused by intracellular bacteria, there wouldn't be need to keep treating...once she had it under control, she could get off the IVIG....but once she stops or even lessens it, everything comes back.

so there is something else weakening the immune system

I met another woman who treated very early with antibiotics. she is able to work f/t as a nurse but must stay on the antibiotics.

anyway, any relief however I can get it would be heaven

 

[Daffodil]

some more interesting reading..excerpts from book:
https://books.google.ca/books?id=0j...onepage&q=biofilm bacteria autoimmune&f=false

 

[5150]

I know a woman who has lived without CFS because she treated early and needs 25 g of IVIG a month to live normally. I guess if the disease was caused by intracellular bacteria, there wouldn't be need to keep treating...once she had it under control, she could get off the IVIG....but once she stops or even lessens it, everything comes back.

so there is something else weakening the immune system

I met another woman who treated very early with antibiotics. she is able to work f/t as a nurse but must stay on the antibiotics.
anyway, any relief however I can get it would be heaven[/QUOTE

"there is something else weakening the immune system"
This is happening to me too. Whatever the true pathogen, it's not showing up in any standard Western medicine efforts. As soon as I stop abx, the problems reappear in a couple days. Fraekin VA won't do a fecal transplant and Regular GI guys are so weak I can't trust a word they say,

sorry Daff, to hear about things as of now. Wish i could help. Thinking of you & hang in there.

 

[nandixon]

I met another woman who treated very early with antibiotics. she is able to work f/t as a nurse but must stay on the antibiotics.

If by chance she's using a tetracycline antibiotic (like minocycline or doxycycline), those have potent anti-neuroinflammatory effects in addition their better known antibiotic effect. The anti-neuroinflammatory effect is mainly with respect to inhibiting activation of microglia, I believe.

Minocycline in particular was used in a very interesting animal model theory that might, conceivably, be applicable to her (or not). It was presented in a research paper which was the topic of this thread:
Immune-induced model of CFS - Interleukin-1 in brain may trigger fatigue (2014)

I gave a post on that same thread here in an attempt to give a simple explanation of the paper and, possibly, the practical implications.

 

[Daffodil]

If by chance she's using a tetracycline antibiotic (like minocycline or doxycycline), those have potent anti-neuroinflammatory effects in addition their better known antibiotic effect. The anti-neuroinflammatory effect is mainly with respect to inhibiting activation of microglia, I believe.

Minocycline in particular was used in a very interesting animal model theory that might, conceivably, be applicable to her (or not). It was presented in a research paper which was the topic of this thread:
Immune-induced model of CFS - Interleukin-1 in brain may trigger fatigue (2014)

I gave a post on that same thread here in an attempt to give a simple explanation of the paper and, possibly, the practical implications.

very interesting, nandixon.

there is definitely something I cannot wrap my head around about the theory that it is intracellular bacteria at fault and the rocephin was acting on that:


if rocephin really cleared so much of the infection in the CNS, why did it return in a week?? intracellular bacteria such as borrelia and chlamydia Pn. doesn't spread that fast. if it did and that was the cause, wouldn't we be dead long ago??

If Rocephin was acting on translocated bacteria from a huge leaky gut problem, that might make more sense?

What if we all had a partial leaky gut problem before the CFS (I think most of us had IBS). and some stressor (such as EBV) came along and totally ruined our guts (I read somewhere that EBV replicates preferentially in the gut or does something bad to the gut)? And that is the reason for this whole thing......literal holes in our gut letting bacteria into the bloodstream?

My mucosal IgA is VERY low.....it is low In people with conditions such as CFS, autism, etc. This is a further indication that our guts are a mess.

How do we fix this? Can diet alone fix it? Maybe not, if it has gone on a long time. My doctor says low IgA can be genetic and not even fixable. Indeed, babies who were not breastfed (like me), are prone to lower mucosal IgA.

What if gut integrity is severely lacking (IBS) and so we were not able to control the further damage the immune stressor was doing?

Just brainstorming again....

 

[Daffodil]

but hold on...IBS is caused by intracellularr bacteria too, they say.....so the EBV (or whatever) made it spread and increased the leaky gut so we have to treat both the gut and the bacteria OH HELL IGNORE ME I go through this thought process every week for 20 yrs never get anywhere drive myself crazy

 

[Daffodil]

well anyway my recent CD4 count was 760. I guess thats better than the 400 and some it was when I was on my deathbed.

CD8 still high

CD3 low......I think that is the total count of the T cells....

 

[physicsstudent13]

I've been trying 100k a week of vit D in 7 divided doses and 2g a day of vitamin C, I've also tried 2g injections of vitamin C which increases NK function
I've heard that Lyme's can be encapsulated in biofilms and doxycycline alone isn't effective. maybe nitroxoline or herbal antibiotics might help also?
In Vitro Effectiveness of Samento and Banderol Herbal Extracts on the Different Morphological Forms of Borrelia Burgdorferi, lead author Eva Sapi, PhD, of the University of New Haven

 

[Daffodil]

Yersinia causes Reiter's disease, as do various other intracellular bacteria. However, there is no evidence for specific immunity against self in Reiter's so it is not an 'autoimmune disease'. I have never heard of any reliable evidence linking these organisms to diseases with true autoimmunity in the form of autoantibodies like Hashimoto's. If there was such evidence I think I would have heard about it. Kawasaki is an odd one which as far as I know is not known to be autoimmune. The term autoimmunity has been very loosely used in the past which confuses everything.

The difference between T cell mediated and antibody mediated:
The adaptive immune system that produces specific immune responses to newly encountered antigens like viruses and bacteria and gives you 'memory' for such responses involves two main types of cell: T and B. Moreover, the T cells are divided mostly into CD4 and CD8.

The job of CD4 cells is chiefly to 'help' B cells make antibody to antigens floating about between cells. The interaction involves HLA-DR and DQ molecules, which is presumably why autoantibody production is often linked to certain DR or DQ genes. The diseases of this CD4 T dependent B response are the knwon autoimmune disease like lupus, RA, coeliac, scleroderma, pernicious anaemia etc etc.

The job of CD8 T cells is to recognise viral and bacterial antigens that have got inside cells. Since viruses always get inside cells CD8s are particularly relevant to virus immunity. CD8 T cells have their antigen presented to them by any cell, not just B cells, and this involves HLA-A,B and C, not DR and DQ. Diseases associated with A,B and C genes do not show autoantibodies or in fact any evidence of autoimmunity from the T cells but seem to involve a non-specific over-reactivity of T cells. They include ankylosing spondylitis and Reiter's (B27 linked) psoriasis and its arthritis (Cw6 and B27 linked) and Crohn's or UC arthritis (B27 linked). Behcet's disease is B51 linked but may involve the interaction of HLA-B with another type of cell - NK cells.

So as far as we know Reiter's disease is an over-enthusiam of CD8 T cells (which also like to talk to CD4 T cells but not B cells) that is not truly autoimmune. In almost all cases the bacterium that starts things off either dies off or is killed by antibiotic within two or three weeks. However, the T cells do not seem to settle down. This might seem odd but in Ank spond the T cells seem to get over-reactive without any involvement of bacteria so it seems that persistent overactivity is something that can occur anyway,especially if the B is B27.

Hi Jonathan. Is it possible to have high CD8 cells because of intracellular bacteria and not viruses? Or would long term intracellular bacterial infection (just supposing we have that) cause a depression in CD8?

THank you

 

[Daffodil]

I've been trying 100k a week of vit D in 7 divided doses and 2g a day of vitamin C, I've also tried 2g injections of vitamin C which increases NK function
I've heard that Lyme's can be encapsulated in biofilms and doxycycline alone isn't effective. maybe nitroxoline or herbal antibiotics might help also?

I asked my doc if I should get IV Vitamin C..i found a place that does it cheaply here...but he said it doesn't stay in the system very long

 

[physicsstudent13]

In Vitro Effectiveness of Samento and Banderol Herbal Extracts on the Different Morphological Forms of Borrelia Burgdorferi, lead author Eva Sapi, PhD, of the University of New Haven
rocephin is a really great antibiotic when taken with a gallbladder medication

 

[Daffodil]

very interesting, nandixon.

there is definitely something I cannot wrap my head around about the theory that it is intracellular bacteria at fault and the rocephin was acting on that:


if rocephin really cleared so much of the infection in the CNS, why did it return in a week?? intracellular bacteria such as borrelia and chlamydia Pn. doesn't spread that fast. if it did and that was the cause, wouldn't we be dead long ago??

If Rocephin was acting on translocated bacteria from a huge leaky gut problem, that might make more sense?

What if we all had a partial leaky gut problem before the CFS (I think most of us had IBS). and some stressor (such as EBV) came along and totally ruined our guts (I read somewhere that EBV replicates preferentially in the gut or does something bad to the gut)? And that is the reason for this whole thing......literal holes in our gut letting bacteria into the bloodstream?

My mucosal IgA is VERY low.....it is low In people with conditions such as CFS, autism, etc. This is a further indication that our guts are a mess.

How do we fix this? Can diet alone fix it? Maybe not, if it has gone on a long time. My doctor says low IgA can be genetic and not even fixable. Indeed, babies who were not breastfed (like me), are prone to lower mucosal IgA.

What if gut integrity is severely lacking (IBS) and so we were not able to control the further damage the immune stressor was doing?

Just brainstorming again....

so i asked my specialist......how can symptoms return so quickly after rocephin is stopped, when the bacteria does not spread that quickly?

he said that when you wipe out 80%, the 20% that is left is very strong or gets all the food or something and can replicate quickly....or something like that. my memory isnt too good sorry. anyway he had an explanation for it.

i asked if it was acting on gut bacteria too and what was the interplay between the two but i think this is an important part of the research so i could not get much info.

 

[cafe]

hi @Daffodil you mentioned earlier in this thread a nurse staying on antibiotics and "feeling" ok like this- how did she achieve to find a doctor willing to prescribe her antibiotics on a regular basis?
If I could stay on amoxicillin/ampicillin I would give myself a 6 or even 7 on a scale up to ten. Without it my health deteriorates to a 3 max. 4. But there is no doctor willing to prescribe it regularly and there is no ampicillin I could simply buy around the corner, which probably makes totally sense - but I really, really would like to know why this substance has this effect on me! So far most doctors stared at me in disbelieve - that´s probably a different story.
Unfortunately I haven´t had the opportunity to try rocephin...

 

[Daffodil]

hi @Daffodil you mentioned earlier in this thread a nurse staying on antibiotics and "feeling" ok like this- how did she achieve to find a doctor willing to prescribe her antibiotics on a regular basis?
If I could stay on amoxicillin/ampicillin I would give myself a 6 or even 7 on a scale up to ten. Without it my health deteriorates to a 3 max. 4. But there is no doctor willing to prescribe it regularly and there is no ampicillin I could simply buy around the corner, which probably makes totally sense - but I really, really would like to know why this substance has this effect on me! So far most doctors stared at me in disbelieve - that´s probably a different story.
Unfortunately I haven´t had the opportunity to try rocephin...

hi café. what you must do, is find a local doctor and tell them your story. usually, you can find a sympathetic doctor to help. you just have to keep looking. if I can find some here, surely you can find some too. sometimes younger doctors are better. if this does not work, someone on this board who lives near you might be able to help connect you to an open minded doctor. you can also see a CFS specialist.

there are many boards to try too. the lyme disease forums, cpnhelp.org, etc. there are thousands of people who are getting help and will connect you to some doctors who will prescribe long term antibiotics.

if you want IV antibiotics, things get a little trickier.

of course, the smartest thing to do is see a specialist who could test you and maybe find an organism to target..maybe they will find out why you seem to respond to some antibiotics in particular.