Proof chronic lyme is just autoimmune

Been helping, noticed my neuropathy seems a little bit better. Adding the lions mane and cordyceps in soon, others in the SFN chat on FB have noticed the lions mane has helped their neuropathy.

How you doing buddy, feeling better?

Is it possible that what we are calling autoimmune here could potentially be mast cell driven, and not our body attacking itself? Either too many mast cells or improper response. Mast cells are cytokines, right?

I thought of this when dcd said those with autoimmune react to everything.

Interesting. If it is autoimmune.... why do antibiotics cause a herx?

Great point...

However, I'm sure dcd2103 would say what we're feeling is just a cytokine flare, similar to something like Lupus....

But again, why's the herx so precise right after taking antibiotics?

Remember Lostcoast and Girlie, not everyone is as sensitive to herxes as other lyme patients. I think this is both due to coinfections like babesia and that autoimmune state dcd2103 is referring to.

My guess is, after reading dcd2103's symptoms, he has still has some full blown coinfection(s) in his system such as babesia, could even be other viruses as well, where all of them may be keeping his immune system suppressed... And he's not as sensitive to antibiotics/herbs or herxes like Mandy Hughes with the seizure herxes she suffered in Under Our skin.. A good question would be is, dcd2103, in all the years of treatment have you felt a lyme like seizure or at least a herx that sent you to the Emergency Room?

Just so you know, I didn't receive my first seizure like herx until I finally knocked back Babesia.... That's 7-8 years after antibiotic treatment and the Michigan lower level tier doctors weren't aggressive enough with this parasite like the way Dr. H or Dr. J treats it. I think most are highly underestimating this parasite!!! Going back to the yale study again...

So if babesia, as well as other coinfections are holding your immune system back, it's very likely that you're not going to herx as severely compared to someone who's dealing with just bartonella and borrelia, or even just borrelia.

Now in the 9th year of treatment, I now have to be careful of adding in a herb like oregano to my antibiotics because that may send me to the ER because of the herxes being so severe and extreme.

Looking back at my early stages of lyme, I could easily understand why one could easily assume heir body is an autoimmune state because they're not responding to antibiotics after 4-5 years of treatment or longer, and overall the herxes are minimal if felt any throughout those years. I know, because I went through it... My herxes were never that severe and progress was very slow...

But again, what made me know this wasn't autoimmune, is when in the 2nd year I felt a difference with flagyl within a week. After a few months though, progress tapered off and I platuead. I wouldn't see that similar type of huge progress like flagyl for another 6 years until I tried dapsone. What do both of these drugs have in common? They're both antibacterial and antiparasitic, so they hit a wide range of infection and also cross the blood brain barrier quite well due to bioavailability.

If I were you dcd2103, I wouldn't give up and just think your disease is autoimmune. Do what you can to try some of these new drugs that are getting people out of wheel chairs and beds.

Father bedbound by Lyme disease is back on his feet due to a drug for alcoholism
https://www.yahoo.com/lifestyle/father-bedbound-by-lyme-disease-is-back-on-his-feet-due-to-a-drug-for-alcoholism-110955745.html

I'd say 99% of the Medical Doctors would say Ciaran Hughes's case was autoimmune and irreversible...

Oh and hey, look at that dcd2103... He never really responded to any antibiotic treatment either.

said...
Desperate, Mr Hughes sought private treatment. Although this led to his diagnosis, the prescribed antibiotics failed to ease his symptoms.

I'd put money on it that Ciaran Hughes never herxed on antibiotic due to having babesia as well as other multiple confections. It's very likely dormant viruses may be working with babesia to keep the immune system suppressed..

I tested positive for Parvo and EBV when I first contracted lyme.

Keep hope dcd2103, cases like Hughes along with my story, should give you just that... I hope what I'm saying sounds mighty familiar what you've gone through...

I think as you progress with treatment, the autoimmunity and inflammation comes down, the herxes should be a lot easier to spot along with matching symptoms to a particular confection.

While treatment can be slow with just antibiotics, I think you can still progress slowly at a snail pace and bring down autoimmunity and inflammation, allowing your immune system to respond and make it much easier to treat the coinfections easier down the line. There's a Michigan doctor by me that does monotherapy minocycline, I'm sure this works, but sooner or later him and his lyme patients will have to address babesia or bartonella, and really that's where his treatment fails. As we're starting to find out, both these coinfections only respond to certain particular drugs.

Disulfiram really is the best drug we've ever seen, it seems to hit babesia hard, doesn't alter the microbiome while raising your immune system and probably keeping down autoimmunity and inflammation down, while also waking up dormant spirochete persister cells and killing them. And from what Dr Kinderlehrer said, it seems to hit bartonella partially too. Really couldn't ask for a better drug! Amazing we've been sitting on this drug since the 40s... And now in 2019-20, Dr. Rajadas said it may win the to get the molecule of the year award, lol, go figure...

Post Edited (Charlie55) : 12/14/2019 4:01:30 AM (GMT-7)

Girlie said:
True - you wouldn’t hink abx would ramp up an autoimmune condition.

A herx is a cytokine release. Which mast cells release cytokines. So my theory is that some here have a mast cell issue - too many or improper response. So possibly not our body attacking itself. I think the question would then be, are the mast cells released from killing the bacteria or the antibiotic itself. For me, I’m pretty certain it’s the antibiotic itself.

And Charlie said: But again, why's the herx so precise right after taking antibiotics?

Because your mast cells are reacting to antibiotic. If I take one capsule of most antibiotics my bladder will flare and I can’t sleep. It doesn’t go away but persists. That’s not a herx from killing bacteria. I react the same way to stress, hot baths. And not everyone’s presentation of MCAS is the same. Sebreg had posted on here about people herxing fast and speculating it was actually a mast cell problem. I wonder if some (not everyone) are mistakenly thinking it’s a good sign - a herx - and to push through bc you’re killing bacteria. But possibly you could just be having an MCAS reaction. Just a theory which aligns with my own case.

Post Edited (k07) : 12/14/2019 8:13:41 AM (GMT-7)

MS and mast cells:
https://www.ncbi.nlm.nih.gov/pmc/articles/pmc3509630/

This was interesting to me:

Of interest in the context of MS, NGF (Nerve growth factor) has been found increased in the CSF of patients during acute attacks of disease [37,42] and both MCs (mast cells) and NGF have been reported to increase in chronic inflammatory states such as MS.

Also:
Because of the plasticity and complexity of MCs responses, they have been suggested to play roles in autoimmune diseases, including MS and its animal model EAE. In these disorders, depending on the specific pathological context under investigation, MC has been proposed to either enhance or dampen self-reactive immune responses.


But again, mast cells are triggered by something, or at least initially, right? So I don’t think MCAS is really a root cause. And we could argue that they are just going nuts bc the bacteria is still there.

Post Edited (k07) : 12/14/2019 10:15:24 AM (GMT-7)

k07 said...
MS and mast cells:
https://www.ncbi.nlm.nih.gov/pmc/articles/pmc3509630/

This was interesting to me:

Of interest in the context of MS, NGF (Nerve growth factor) has been found increased in the CSF of patients during acute attacks of disease [37,42] and both MCs (mast cells) and NGF have been reported to increase in chronic inflammatory states such as MS.

Also:
Because of the plasticity and complexity of MCs responses, they have been suggested to play roles in autoimmune diseases, including MS and its animal model EAE. In these disorders, depending on the specific pathological context under investigation, MC has been proposed to either enhance or dampen self-reactive immune responses.


But again, mast cells are triggered by something, or at least initially, right? So I don’t think MCAS is really a root cause. And we could argue that they are just going nuts bc the bacteria is still there.

Yes MCAS isn't the root cause but once triggered, it may be the primary problem. It seems that whether it be toxins, infections or both that trigger them, even if you rid yourself of the initial insult you now have MCAS to deal with

There was a person here years ago (5 - 6) with major Mast Cell issues.

Ive completely forgotten about what I tried to understand on the subject; I did get some sort of several MC blood tests, dont even remember the details other than the ND Drs figured I didnt have it.

If it’s autoimmune and not a herx - how do you explain continual improvement and lessening of symptom numbers over the years of treatment?

I think because that has been a justification to deny treatment for so many in the past. Treatment that may have been very helpful.

Again, the title of this thread is a major problem. We shouldn't be talking in 'absolutes' when it seems we all know better

Girlie: all of this post illness syndromes/ Chronic Fatigue are expected to improve over time. Sometimes months, sometimes decades.
I have often wondered if the healing attributed to treatment ( on average takes like 1-3 years (?)), Is really just the passage of time, and not the treatment itself.

Again, maybe I'm wrong, nobody really knows for sure. But it's interesting. I think we should keep an open mind and consider the possibility of a cause other than active infection.

We should also remember that the Lyme test is testing antibodies, it is only proof of past exposure to Lyme. Indicating either an ongoing or past infection, with no way to know which. The test means very little for people like me who have been bitten by hundreds of ticks. Of course I've been exposed and have borrelia antibodies. That doesn't mean it is nescassarily the cause of my symptoms. Many people contract borrelia and remain asymptomatic.

Personally, these days, I'm leaning more towards Chronic Fatigue triggered by past infection. Probably was Lyme for me. But other people feel the same way after Mono, or other past infections.