Proof chronic lyme is just autoimmune

Thanks for the responses.

dcd2103:

I've read several people's stories about getting bit earlier in life and only developing disease after a period of time. This reminds me of Dr. Rawl's pot boiling over analogy. It seems that a confluence on factors brings this on. I'm suspicious genetic disposition might be an issue. It's interesting that some people that spend a lot of time in the woods, with numerous tick bites, don't get sick. Personally, I got sick right after. In fact, just a few days after my bite I moved in with my then girlfriend now wife. I remember calling her moving day and telling her I wasn't feel great. The first couple months my main symptoms were a mild increase in headaches (nothing that worried me as a fit delusional 28 year old male(, and a stiffness/pain in the bone that sticks out as a lump in the back of the neck (Dowager's lump). Then, in a 24 hr period I had what I would refer to as the "pot boiling over" and ended up in the ER thinking I was having a stroke.

I'm not familiar with the testing scores of ANA. I'm guessing 1:1280 is super high? My LLMD ran a test with a positive/negative value twice. ANA came back positive. Then he runs a panel looking for antibodies associated with common autoimmune illness's and they come back negative. He told me that he sees, how often I don't know, ANA resolve in those who are treated successfully. I like my LLMD. He's a private practice Dr., and I'm not saying he's the best LLMD in the country, but I think he does a pretty good job, doesn't screw over patients financially (relative to some other LLMDS), and I trust his advice. I'm a pretty skeptical person so if my doc is a scam artist he has fooled me. That being said, he does believe there are autoimmune reactions going on in those with chronic Lyme.

Honestly, and I don't mean this in offense to anybody on this board, any doctor, researcher, policy maker, I don't trust anybody that says they have a comprehensive understanding of chronic Lyme, PTLDS, whatever you want to call it. I agree that after being sick for some time that you can't just antibiotic your way out of illness. It'll take a whole health type of approach. Any LLMD worth their salt tries to emphasize this. But I can't ignore that some do get better with longer abx treatments. Disulfiram has worked for some that have been sick for years and years. What's the mechanism behind that? When I first visited my LLMD I was one and half years the tick bite, and the previous year I had been on and off Doxy. I was having increasingly severe symptoms. The first 9 months or so of rotating treatment of Lyme, Babesia, and Bart resolved some of the more worrying symptoms, but it wasn't enough to restore health.

In spring 2019, I got a strong positive T-cell response from ArminLabs in response to two different types of Borrelia. This is after years of abx. Is this test reliable? Some studies do show persistent infection. In summer 2019, 4 years of illness, I started DSF at 500mg. I herxed badly! It was awful. But after a couple months I was able to get into the gym semi-regularly, use their sauna, and be more social. The results snowballed. Then, the pandemic hit, I stopped going to the gym, came off DSF a few months later, and went downhill again. Why did the initial abx work? Why did DSF significantly help after 4 years of illness? I'm not sure. DSF is shown very effective against Lyme in a test tube, but we all know many substances are.

So what's the issue? I've heard blebbing theroies. Buhner says some people have full blown autoimmune, some have DNA fragments left over in which the immune system reacts, and some have persistent infection. I think I've read where there have been healthy people test positive for borrelia. Perhaps some people can harbor it and remain in homeostasis? Perhaps others can't even harbor low levels without debilitating symptoms? At this point, I kind of fall along Dr. Rawl's thinking. Do something that is low in risk, like herbs, that can suppress microbes, while simultaneously focusing on calming the overactive immune system.

This makes me wonder if the ability to modulate the immune system, provide a systemic powerful anti-inflammatory effect, and possibly have some anti-microbial action is why therapies like BVT and Ozone work for some.

Hypothetically, and perhaps, dogmatically (I'm not sure if there is evidence behind the claims of these therapies, these therapies could be considered "whole".

BVT is more popular than Ozone. My suspicions for the reasons of this is as follows:

1. Ozone is more expensive.
2. Ozone is far less convenient. If you need multiple times weekly then your veins might give out. PICC line? I've never heard about someone getting a PICC for long-term Ozone therapy. Additionally, that would be super duper expensive.
3. From my experience in the FB groups, don't take offense BVT people, the vibe is wayyyyyyy more cultish. I do think BVT works by some mechanism. My LLMD thinks it helps retrain the immune system over time. It has a long history of use in pain and autoimmune conditions.

To sum up, individually, I don't really care why something works. I've been ill for over 6 years. I just want to feel better and enjoy life. Collectively, I want this stuff to be figured out so those yet to be stricken ill don't have to go through what we have.

Sorry for the long post. I've been formulating my thoughts on this topic for a couple days.

dcd: I'm sorry to hear about your serum sickness. Is that common or were you just unlucky? I'm a bit confused. Was it Bicillin or IVIG that you developed serum sickness from? Did you take IVIG based on anecdotes from others or your doc's advice? How expensive is IVIG? You spent 3 months practicing autonomic retraining? Was that worth it? Within the last year I got into non-dual meditiation, and philosophy. This has helped quite a bit at times. The mind is powerful. I have had some days in the past year when I woke up feeling decent, and performed a 20 minute meditation that would have me feeling good for most the day. However, usually I would relapse at night. Over the last several weeks I added in many Buhner/Rawl's herbs in addition to Hottunyia and this has seemingly caused a major uptick in nervous system overreaction. Is this because the herbs are working or am I hurting myself? Ughhh, it's all a guessing game.

Anywhooo, all the best you. Keep us updated.

Post Edited (Lymie24) : 11/20/2021 11:57:34 AM (GMT-7)

i haven't read all 7 pages so don't shoot me if its been covered already - but its seems from some of the posts i have read that the discussion is kind of pivoting around a binary concept - i.e. its either auto-immune or its persistent infection

but i see no reason why it has to be one Or the other - i think it can be either or both
e.g. you could have a person who is simply ill from the infection and has no recognisable auto-immune illness
but the person next to them could have a persistent infection but also auto-immune illness

this concept extends to auto-immune reactions that are as yet unnamed ( eg ones that might cause ongoing musculoskeletal issues or cognitive dysfunction )
these auto-immune reactions may subside naturally after proper treatment irradiating the microbes - or at least allowing the immune system to get the numbers under control - and at that point these reactions may calm down or they may continue - perhaps dependent on other factors like general lifestyle( perhaps other triggers remain), genetic susceptibilities (we are all quite variable in the ways our immune systems work ), levels of inflammation in the body etc etc.

it may also be that some auto-antibodies - or the mechanisms that sustain them - are more easily resolved than others - for example i am pretty sure ANA can become negative again in many people, thyroid antibodies have been known to drop back into the normal range ( mine have) - but you v rarely hear of anyone with type 1 diabetes getting fully reversed

I would say Bartonella.

What all have you taken to treat Bartonella?

(Sorry if it was mentioned - I just came on for a few minutes and saw this post))

Interesting looks just like a rash I had a couple months ago. My bart IgG always negative tho. I’d believe bart was an issue for me based on the neuropathy tho.

I’m having IgeneX run Dec 7th, curious what they say about bart

https://ibb.co/mgp297d

I don’t believe that linear stretch marks are caused by bart. I gained 50 lbs in college and got those exact stretch marks I see in all the bart pictures, and it corresponded exactly to the 3 months I gained all the weight. Striae like that are from a stretching or pulling apart of the skin and are permanent, and I feel like llmds do these infections a disservice by calling every stretch mark bart

But I do believe that these red “stretch marks” which pop up and vanish a day later are bart. But again, that’s not a true stretch mark where you have tearing of the dermis, which is permanent. Or weird papules rashes and “stretch marks” as seen in the picture I shared can be caused by bart


Someone shared a great link a while back if bart pictures, anyone have it?

dcd I have a very similar experience.

When I got sick with Lyme I started eating really bad as it was so difficult to take care of myself.

I gained 40 or 50 pounds at the time just like you.

Now I also have stretch marks.

I lost most of the weight again but the stretch marks remain.

So where does that put us? I have no idea.

It's hard for me to watch long videos due to the fatigue, but I saw part of an episode of Bartonella Babe on youtube and she was interviewing someone. But she made an interesting argument herself.

Which was something along the lines that maybe the same people with bartonella who gained weight (or became pregnant) would not have had stretch marks if it wasn't for the bart.

In other words, maybe you and I could have gained weight without the stretch marks if we had not had bart. Meaning, we might have been more prone to it, maybe..

I think the conclusion was something like 'we just don't know'.

Checked out that bartonella FB group. Looked at a lot of pictures. I have to admit some of the stretch marks are in strange places and not what you'd expect for typical striae. I'm open to it now

I made that arugment a long time ago, either or, was very green. My whole argument past 18m or so has been its a continuum

Lymie 24 said: “Buhner says some people have full blown autoimmune, some have DNA fragments left over in which the immune system reacts, and some have persistent infection.”

- “some have DNA fragments left over in which the immune system reacts” - I think this is me.

I never felt like I had active Lyme. My symptoms seemed to indicate strong bartonella with a possible sprinkling of babesia tangled up with mold hypersensitivity and mycotoxin poisoning.

I have been having these striae for years now. They mostly pop up with an intensifying of symptoms. This can be due to regular variation, but I can also induce them sometimes by adding in a new treatment and/or performing intense exercise that gets the hear rate up to max range, boosts oxygen intake, and heats the body up. I've shared photos previously here of when they happen on my back. They are always on my back and butt. Rarely you will see them streaking up my sides from the waist.

Girlie: I have treated for Bart before, but never long-term. I've done a combo of rifampin and azithromycin for a several months before. It doesn't seem that it was enough.

As always, I think it's prudent not to become over-certain about anything in these illnesses, but at this point, I'm thinking a chronic stealth Bart infection is holding me back. I have many symptoms specific to how you see Bart described chronically. Ealier this year I was reaaallllllllyyyy struggling. I went to the ER in February and July this year. I had not felt the need to do that since Jan 2017 which was right before I started treating with a LLMD. I was having episode after episode of tachycardia, palpitations, sweaty hands, tremors, feeling of doom and gloom, chest pain, along with many other common symptoms. I would have the episodes quite frequently at night and be able to fall asleep at all. After my ER visit in July I started tapering down on Disulfiram and I added in Crypto and Hottunyia. These seemed to help. I am having significantly less of these episodes, and when I do the severity is much decreased.

Currently I have added in many Buhner/Rawls herbs alongside crypto and Hottunyia. I'm taking JK, Cordyceps, Reishi, Sida Acuta, Chinese Skullcap, milk thistle, and hawthorn. Per Buhner, and Townsend's online letter, I just ordered some l-arginine to see if that can help alleviate symptoms.

The last couple days I've added in serrapetase. I'm hoping this can help blood flow and possibly get the biofilms/fibrin nests. In addition, I've found, quite contrarily compared to most advice, intense exercise seems to bring on flares for me, but, after the flares I typically feel better. I wonder if this is due to the old hypothesis of driving your blood, oxygen, medications/herbs into more distal parts of the body and deeper into tissues. Also, we know heating up the body is good for wiping these critters out. I'm going to try more HIIT and jogging to see what happens. The last time I made significant progress in my illness was when I was on high dose DSF combined with a semi-regular weight lifting regimen. I aimed for 4x workouts a week (2 upper, 2 lower) followed by a day on the stair machine. Of course, being ill, I wasn't always able to stick to a schedule, but I did reasonably well compared to when I wasn't feeling well.

My whole life, even before the tick bite, I have noticed I get colder easier than most. My blood flow to my hands/fingers has always sucked. Several times in my life, before illness, when I was outside during winter, my fingers would get frost nipped fairly quickly, and it hurts like a SOB when they defrost. 0/10 would not recommend lol. For example, 10 years ago this Thanksgiving, I did a 4 mile run the morning of Thanksgiving. So I was outside for probably just over an hour with gloves on running. My fingers became frost nipped when nobody else I was running with did. If I remember correctly they weren't even wearing gloves.

I wonder if this is connected?

Dr. Marty Ross recommends Liposomal Cinnamon and Oregano. Has anyone tried this? It's pretty expensive ($88) but worth it if it helps.

Has anyone went to, or know somebody, that has been to one of these supposed Bart experts like Dr. Moyazeni? I wonder if they actually have some sort of clinical experience/knowledge that would make a difference compared to an average LLMD. I wouldn't mind, even though I'm sick of abx, trialing a Rifabutin combo short term to see what happens.

WalkingbyFaith said...


- Reading this gave me a good laugh. I needed it, too, as I was crying an hour ago. I didn’t look at the picture. Your description was clear enough, LOL!!!

Lymie24 said...
These marks along with other symptoms I get that are aligned with Bart such as bottom of foot pain/cramps (not as bad as others I've read about), shin pain (ditto and it's not constant), a feeling of burning in throat and/or feeling like coming down with a sore throat but never actually does, cardiac issues.

- Sounds textbook

Lymie24 said...
There have been times, such as this July 4th where I literally cannot stand noise. I had to sit down, and meditate for like an hour to make it through that night.

- Sorry about that. I had a similar time this past July 4th. I had been looking forward to it for weeks, but I was not feeling well when the day arrived and got in a really funky mood. Instead of sitting in the front yard with my mom watching fireworks and lighting sparklers, I retreated to my car, put on sunglasses, closed my eyes to block out the flashing lights and covered my ears until the fireworks were over with. Instead of fireworks coming from the street behind us like the year before, they were coming from all over in every direction. I got totally overwhelmed and over-stimulated

Lymie24 said...
I have seen many on the DSF FB group claim there Bart flared during or after treatment.

- I have heard likewise from those who posted here. That doe not surprise me at all. At one of my first appointments with my current Lyme doctor, she told me that treating Lyme and coinfections is like playing whac-a-mole. You beat one down and another pops up. You keep treating until it’s all gone. I have experienced the same thing. Bartonella and babesia symptoms used to be like a seesaw. For whatever reason, treating parasites herbally used to cause bartonella flares.

I'd imagine we can all use a good laugh! lol

I'm sorry you went through that on July 4th. Solidarity fist! It's weird how knowing someone is also going through what you are going through is comforting.

I have the same problem with over-stimulation. I can't shake it. Stimulation levels that before getting sick were just normal send me into a tail spin. Other than some of the symptoms I've described in previous posts it's probably one of the things holding me back the most. Have you found anything that helps? Eating well, exercise, meditation, taking it easy when needed helps, but when I get into a stimulating situation I fall apart. Symptoms come on fast and intense. For example, tomorrow I'm going over to my parents for Thanksgiving. My brother, his wife, and my 3 nieces will be there. I'll prob be over there for 4 - 5 hours. When it's over I'll be a puddle of goo, and that's in a situation in which I'm comfortable and can relax.

Lymie24 said...
IAnother thing that I find crazy is these symptoms seemed to get worse or sprout up after DSF treatment. I have seen many on the DSF FB group claim there Bart flared during or after treatment. Now listen, if I was a skeptical doctor I think I would probably be wary of this claim. "Sure, not only do you have persistent Lyme, but now that you've cleared or greatly reduced that Bartonella took over" It sounds stupid. Maybe I've been done with the other infections for a long time, and Bart has been the problem. Perhaps the symptoms have changed over the years. I'm not sure, but the role of stealth co-infections might play a big part for people.

This seems to be the go to "theory" in the group when it makes someone much worse. I personally don't buy it, I think something else is going on. I havent seen anyone come back and say I treated Bart after I got really bad on DSF and came back and took DSF and it really helped. The group is pretty toxic to folks who have really bad "side effects" or flares.

Thanks for that garzie.

I've watched several of Bartonella Babe's videos. I like them. Very informative.

Actually, I can't handle HIIT workouts or perhaps more accurately, if I'm feeling well enough I can do them, but the next day or more I flare and feel like crap. I did one yesterday (I did the insanity workout that is on Youtube and it is wayyyyyyy too much. Took a million breaks) and feel terrible today. This happened several times last week as well. My hypothesis is to perform them to hopefully drive blood, oxygen, herbs, supps to more distal parts of body, and deeper into tissues. Of course, I can't do them everyday. When it warms up a little I'll try some jogging. I hope to mix in less intensive workouts like yoga, bodyweight, and fitness bag exercises. It might be a bad idea as it runs contrary to all advice I see posted, but it seems, key word seems, that after I have recovered from the HIIT workouts that I felt better. I've only been doing this for about a week so I can't make any type of confident statement. We will see what happens.

Have you had any problem taking Alchornea long term? I thought I read that it wasn't recommended more than a few weeks.

Thanks for the advice on the Bart group. I'm going to join.