Proof chronic lyme is just autoimmune

Lostcoast:

Regarding CFS, have you heard of Dr. William "Skip" Pridgen? If you Google "pridgen protocol" you will find some information about how he's been able to help some people with ME/CFS.

Here's a few links, if you're interested:

http://www.tuscaloosasurgery.com/tuscaloosa-surgical-associates.htm
http://www.innovativemedconcepts.com
https://www.google.com/search?q=pridgen+protocol

In the following links, search the comments for "Rob Buelteman" and what he's written:

http://simmaronresearch.com/2017/03/valley-death-fibromyalgia-pridgen
http://simmaronresearch.com/2017/10/chronic-lyme-disease-not-lyme-disease

Best wishes.

Lostcoast - There are and have been other tests besides antibodies for lyme bacteria.

Examples:

1)Igenex- antibodies like you mention

2)iSpot- tests your bloods immune cells (not antibody) in contact with a lab specimen sample of lyme bacteria (Im not exact here)

3)Blood culture - lab watches it grow in your blood

of course there are some others too. Prob with above its they are testing from blood, not cerebral or spine fluid. Lyme runs from the immune cells, which are only in your blood.

Astro;
I know the culture test exists, but have never heard of anybody actually having one done. I think it requires cns fluid and is rarely done.
To my knowledge, when we talk about Lyme test, we are really talking about the antibody test that is commonly used, the Elisa and Western Blot. Which do nothing to tell us active vs past infection.

Astro - DNA connexions did a pcr test right?
It wasn’t cultured tho? Or am I wrong.

A pcr test detects the DNA of the bacteria so it is reliable if you get a positive - unfortunately high false negative rate.

I think the culture takes a few days - to see the bacteria grow.

The pcr is detecting DNA of bacteria - no culture.

https://dnaconnexions.com

Trying to remember the other lab that shut down

dcd,

You clearly have researched this angle and have read a lot of stuff.

Have you read Shoemaker’s work on CIRS? Most people connect CIRS with mold but Lyme and other biotoxins also trigger CIRS. According to the Shoemaker, if you follow the steps in identifying the triggers and removing exposure and then address lab abnormalities and take Cholestyramine to remove the toxins, you can recover. Some need VIP at the end. The whole premise is that if the patient is removed from exposure, the toxins are removed and body functioning is assisted until normalized, then the gene activation is switched off.

The Shoemaker protocol is very difficult to implement effectively and some doctors have decided it was flawed. Regardless, the whole idea is that there is a way to turn off the inflammatory immune response that is responsible for symptoms.

Buhner also identifies the inflammatory cytokines activated by the different infections and includes herbs to modulate those immune responses. You said you read his books and did all kinds of testing. Did you implement his recommendations for how to remodulate the immune responses?

When you say autoimmune, I think of that is your immune system creating antibodies against your own tissues or organs. When I think of CIRS or chronic Lyme, I think of specific genes (especially HLA-DR) being switched on to create chronic inflammation. In both cases, there’s supposedly a genetic susceptibility paired with an environmental trigger.

I do believe the aberrant gene activation can be switched off, but it’s not easy. It requires the environmental triggers to be removed and the body to be supported in the areas it isn’t functioning normally. The immune system has to be supported as well. The consensus seems to be that non-inflammatory diet and high levels of nutrition are the most effective at providing the support the immune system needs. All that has to be kept consistent long enough for the immune system to right itself.

When I was looking for alternative medical help before I knew I had CIRS and Lyme, I cam across a practitioner in my state who recovered from advanced RA through diet. He has a clinic where he treats patients first with a water fast followed by non-inflammatory high nutrition diet. He uses supplements sparingly. He has helped others recover from various autoimmune diseases this way. Of course, Terry Wahls achieved recovery this way, too.

As I write this, I marvel at how we strive to overcomplicate everything. In spite of everything I just said, I myself, have resisted and neglected to focus intensely on diet and nutrition and avoiding inflammatory triggers.

I should add that with CIRS the inflammatory triggers are not only external, but internal as well, in the cases of MARCONS, borrelia, mold. The toxins produced by these internal pathogens are an ongoing environmental trigger even after removal from exposure (removal from exposure to water damaged buildings, treatment of Lyme and coinfections, treatment of MARCONS). The immune systems of those with genetic susceptibility don’t adequately identify and remove the toxins, allowing them to be recirculated through the body creating ongoing inflammation. Cholestyramine (bile sequestrant) can remove the offending toxins.

Post Edited (WalkingbyFaith) : 2/4/2020 4:11:54 PM (GMT-7)

dcd,

“Hoping to open up the extracellular matrix and start nourishing my cells. ”

- how do you do that?

Also wondering about WBF's question, and curious about your friend's algae!

Sorry I forgot to city my source.
He hints at something missing or something making Lyme invisible in one of these two videos, I can't watch it cause it won't work on my phone:

https://archive.org/details/excerpts-from-interview-with-willy-burgdorfer
https://archive.org/details/willy-burgdorfer-talks-about-lyme-disease

It's confirmed in this study:

"The outer membrane of most spirochetes is a lipid bilayer that lacks the lipopolysaccharide molecules present in most gram-negative bacteria"

https://www.ncbi.nlm.nih.gov/pmc/articles/pmc4688064/

Girlie said...

I was reading on a website - for Autoimmune patients who took minocycline for their 'disease' and got better.

And...there was that study on MS patients who got well on minocycline.

I'll try to find something to back it up.

yes but minocycline has immune modulating properties on its own:

"The mechanisms responsible for the pharmacological actions of minocycline in EAE are its influence on T-cell activity, its ability to inhibit microglial activation and its neuroprotective effects. In vitro studies have revealed that minocycline inhibited antigen processing for presentation to human T-cells (Kalish and Koujak, 2004), T-cell proliferation and production of inflammatory cytokines (Kloppenburg et al., 1995; 1996), and T-cell transmigration across a fibronectin matrix barrier, most likely via the inhibition of MMPs. In vivo assays have found that this antibiotic promotes immune differentiation from a type 1 helper T-cell (Th1) to a type 2 helper T-cell (Th2) phenotype, thus modulating the susceptibility to EAE (Popovic et al., 2002). Regarding microglial activation, Popovic et al. (2002) found in relapsing-remitting EAE that activated microglia were absent in rats treated with minocycline. Moreover, minocycline inhibited microglia MHC II expression and the subsequent reactivation of T-cells, which resulted in attenuation of the clinical severity of EAE (Nikodemova et al., 2007) and reduced infiltration of T lymphocytes into the CNS parenchyma (Brundula et al., 2002; Popovic et al., 2002). In addition, the direct antioxidant potential of minocycline attenuated reactive oxygen species (ROS)-mediated neuronal and axonal destruction in vitro (Wilkins et al., 2004) and its ability to chelate Ca2+ may prevent the activation of calpains and preserve axonal integrity, as observed in minocycline-treated EAE rats (Stirling, 2004; Yong et al., 2004; Maier et al., 2007)."
https://www.ncbi.nlm.nih.gov/pmc/articles/pmc3651660/

so the sad reality with lyme is that yes, it is not clear what is going on. Autoimmune triggered by borrelia - which is gone OR autoimmune sustained by borrelia presence, which never leaves ... it's not clear. and that says so much about our healthcare system. the price of human beings is very low on an overpopulated planet. so who needs healthcare when u have almost 8 billion. This is why healthcare is under-budgeted and when an event like coronavirus happens, we are grossly under-prepared....

dcd2103,

Apologies if you have already updated on your progress, but I found this thread interesting and I was wondering how your strategy fared.

You said, correct me if I'm wrong, this is a long ass thread lol, you were using some adaptogens, removing amalgams, and trying IVIG. If that didn't work you would try immune suppressing biologics. How did this all play out and how are you doing today?

Lymie24 said...
dcd2103,

Apologies if you have already updated on your progress, but I found this thread interesting and I was wondering how your strategy fared.

You said, correct me if I'm wrong, this is a long ass thread lol, you were using some adaptogens, removing amalgams, and trying IVIG. If that didn't work you would try immune suppressing biologics. How did this all play out and how are you doing today?

Hey lymie,

Before I asnwer your question about how i'm doing now, let me give you some background about myself and my symptoms, because it may be relevant for you to make a decision if you think we're similar.

I grew up in Connecticut and played in the woods pretty much daily. I have 2 known tick-bites as a kid, both times the tick was engorged for a long time. I never felt quite right as a kid, but around 30yo i developed "vestibular migraines". This was around the time that we noticed that my ANA was positive at 1:160. I then developed muscle pain and "fibromyalgia", depression, anxiety, frequent urination, exercise fatigue, and then the worst symptom of all in 2019, small fiber neuropathy.

My ANA is now 1:1280. So clearly I do have an autoimmune condition at this point. But I also have known tick bites and lived in an endemic area, and my lyme titers came back from MDL labs positive for 41, 58 and 66 two times wtih MDL labs.

So I have autoimmune, but the question is, do I have lyme? My neurologist who is also an LLMD says i 100% had exposure. And he thinks thats what triggered my autoimmunity. This seems to be a common occurence in lyme patients. I know Running Wild is currently dealing with a connective tissue disease from Lyme, Garzie has a positive ANA. Others on this board have developed not so much a traditional connective tissue disease, but more of a CIRS inflammatory response. Also plenty on this board with low WBCs, which usually indicated autoimmunity.

Dr K, my neurologist thinks that the residual lyme spirochetes are nearly impossible to kill. They sit in the background triggering the immune system. He uses bicillin LA becasue its stealth and doesnt awaken their defense and very tolarable which is what you need for chronic lyme, but unfortunately I developed serum sickness from it. But...he truly believes the best way to shut down chronic lyme is with IVIG, which dampens the bodies response.

I was on it for 6 months. Unfortunately RIGHT when it started to kick in and help me, I got cocky and upped the infusion rate and wham, developed serum sickness again, this time to IVIG. Its a rare side effect, but something I'm prone to. I'm actually starting SCIG this week which is a subcutaneous form which is better tolerated, so hopefully it can work this time.

Wrt to herbs, I cant seem to tolerate them. Every time I start one up, i get intense neuropathy that continues until i stop. I can never get to the the other side, and I dont think that i'd even be able to kill every last spirochete anyway. I personally think that if you've got an autoimmune condition, all youre doing is poking the beast with herbs ie flaring, not herxing. And that also begs the question, even if I killed them all, would my autoimmunity disappear? The problem is that once the autoimmunity begins, you start reacting to everything. Stress, unhealthy habits, but particularly stimulating food.

So for me the biggest benefit I've gotten was cutting out every bit of inflammatory food from my diet. No processed food, sugar, dairy, grains, gluten, nuts, or nightshades. This has improved my neuropathy by about 50%. Hoping I can stick it out long enough that it keeps improving, the gut lining heals, my body stops reacting to food and the autoimmmune antibody titers go down. In combination with the SCIG, maybe then I can try treating with herbs. As I detailed on here, i spent 3m at the spero clinic as well doing autonomic retraining. It helped my neuropathy some and fixed my posture and calmed me down, but my autoimmunity is still there. I also plan on tryin to chelate metals with OSR.

Post Edited (dcd2103) : 11/16/2021 1:03:26 PM (GMT-7)

Im a strong vote on something else is going on. Whether its your bodies inability to handle an infection, autoimmune, inflammation run amok. The evidence for antibiotics for years is just not there to convince me its a viable strategy. Its an easy strategy take these pills and kill everything and hope. Something about going to the pharmacy to pick up something handed to you by someone professional looking creates a sense of this must help me. Folks argue they are herxing which makes sense its a broad spectrum antibiotic who knows what its killing good and bad.