Healthy to Lyme to Autoimmune Disease in 2 1/2 Years

Been sick, in pain & exhausted since the ticks bites 2 & 1/2 years ago. The medical system declares me as 'treated for Lyme' because I took 21 days of Amoxicillian. I keep getting sicker but my concerns were basically ignored until the nasty huge red rashes on both hands and 1 foot. Finally, dr ordered actual blood tests which showed positive for autoimmune disease. They're thinking lupus & connective tissue, perhaps. None of these rapidly changing symptoms existed before the tick bites. The sickness never went away it just kept changing and making me weaker and more exhausted. Now being sent to a dermatologist & rheumatologist. I believe 110% this is all, direct result of the tick bites. So sick of being sick. Especially annoying to have large-red-rashes on exposed areas of the body. Anyone else develop rashes or autoimmune diseases soon after Lyme disease infection?

I have been dealing with Lyme for many years, but in the last year have developed autoimmune symptoms - heat intolerance, strange skin patterns on face, vitiligo. But despite having about four or 5 sets of autoimmune tests, almost all have been negative except complements C3 and C4, and a mild ANA positive once. Multiple Lupus tests negative, multiple sjogren's test negative, multiple scleroderma tests negative, many ESR and CRP tests showing very low scores, as in low good.

I'm still confused if it means Lyme causes autoimmune symptoms or actual autoimmune disorders.

Wow Running Wild. That's a good question! I tested positive on the ANA one time & for RA factor 2 years ago, once but had no other autoimmune testing done yet. So frustrating to have so much testing done that doesn't show you jack. No real answers, no real cures, little relief. Just a lot of bewildering symptoms that drive you nuts. Sure hope you find some answers soon. Hope we all find relief from this cryptic mega monster.

Also I’d like to see your bloodwork (if you wanna share) that’s got them thinking lupus or ra. I can probably shed some light as I’ve done deep down the rabbit hole on this stuff.


Describe the rashes how long did they last what do they look like? Is there heat/swelling? Do you have nerve pain?

Post Edited (dcd2103) : 1/3/2020 5:17:03 PM (GMT-7)

These are very subtle questions at their heart, so maybe makes sense to start from the beginning and describe how the immune system works and that will help you see the difference.

There are two halves of the immune system, the innate and the adaptive. The innate immune system is the most basic part. It consists of large WBCs like macrophages and neutrophils that sense a pathogen or an injury. If one of these happens they swarm the area, releasing cytokines to call others to the area. They literally ingest pathogens and friendly cells that have pathogens in them. They also create heat and swelling to rebuild an injury. This part of the immune system is inflammatory (in that cytokines are released).

But the innate immune system is very basic, its not good at recognizing pathogens. This is where the adaptive immune system comes into play, the part that has memory. Its split into two parts, the cell-mediated and the humoral. The cell-mediated portion is controlled by T-cells and deals with pathogens that are hiding inside cells. It recognizes proteins on cell walls using the MHC (major histocompatability complex) and releases cytokines telling the innate macrophages to swarm and injest the cells. In this way it also tends to be inflammatory, as cytokines are released and they tend to cascade and get carried away. The second part is the humoral immune system, controlled by B-cells that attack pathogens in the blood, or humor. These b-cells create antibodies that recognize a specific pathogen. Once they see that pathogen (antigen), the antigen literally fits perfectly into the antibody and they bind, signalling macrophages to consume the pathogen. This isnt inflammatory as there are no cytokines released (although B-cells can release cytokines through the complement cascade and signal t-cells into action, but the general rule of thumb is they are much less inflammatory).

So I believe, and there seems to be supporting evidence, that most of the "autoimmune" symptoms (fatigue, joint swelling muscle pain, etc) from lyme are due to inflammatory cytokine cascades getting out of control. The inflammatory portion of the immune system is on high alert and goes nuts. This is why i prefer to describe this portion as autoinflammatory, instead of autoimmune. Its not necessarily that the body is trying to purposely attack itself, its that its lost control and is creating inflammation that is attacking everything...the bad guys, but also the good guys as collateral damage. This is why there's so much focus on controlling inflammation. I do believe that once you remove the pathogen, that the out of control inflammation can right itself. This is also a little different than a true inflammatory T-Cell disease like MS or Sjogrens, where the main mechanism of action is cytokine potentiated inflammation, but its specifically directed at the "self" because its gotten confused. Autoinflammatory (most Lyme symptoms) creates runaway inflammation that accidentally damages the self. Autoimmune T-cell diseases attack the self on purpose because the MHC has gotten confused. In a similar way, autoimmune B-cell disease attack the self on purpose because the theyve gotten confused and create autoantibodies against the self. This b-cell process is self perpetuating and very hard to stop unless you completely over-write the adaptive memory.

So to summarize, lyme causes the immune system to go nuts. Most lyme symptoms are caused by runaway inflammation (cytokine cascades) that damages indiscriminately. These can be corrected by controlling inflammation, removing the pathogen and calming the system. Lyme can also cause the body to get confused and create real autoimmunity, where it starts to recognize the self as the enemy and attack itself, not by accident or as collateral damage, but on purpose. This is the difference. Generally these become part of the immune memory and have to be controlled by immunosuppression as you mentioned, although it does seem like some people are able to achieve remission through immune rebuilding and/or trigger removal.

W/ respect to vitiligo, I dont have a ton of experience w/ that one. I think its poorly understood, and I've never heard of it associated w/ lyme, but my guess is its probably a true T-cell autoimmune disease, which would mean immunosuppression. I would look into IVIG. Its immunosupportive not suppressive, will help all your lyme syptoms, and theres some evidence it helps vitiligo (although its super expensive and hard to get approval for unless you have demylenating nerve pain). Like i mentioned, some people do achieve remission simply by immune rebuilding and pathogen removal. I'm very interested in this water fast that piroutte mentioned, might try a 5 day one soon, and if that works consider something longer. Lyme isnt the only trigger for autoimmunity, there's a ton of nasty stuff in our biomes that can cause it.

Post Edited (dcd2103) : 1/3/2020 7:04:13 PM (GMT-7)

dcd - This is the best explanation I have ever seen as you go into technical aspects of it all then simplify it. Great, great post. Do you work in this area? Your knowledge seems beyond the normal "find it on the internet."

In my situation, to answer your questions, almost all is normal. ANA has been high once, either 1:80 or 1:160. RA factor <10 (0-13 normal), ANA with reflex negative (multiple, 3, times), SED rate 2, ESR and CRP 1, Free k and L light chains all normal except Kappa (22.9), Sjogren's Ab, Anti-SS-A/-SS-B <0.2 (multiple times), anti dsdna negative (multiple times), Smith antibodies negative (multiple times), and more.

The one thing that was suspect is complements C3 and C4, which were mildly low and can indicate autoimmune.

That is what throws me as the tests have been done a number of times, yet my hands and feet freeze, vitiligo, weird symptoms. One negative test wouldn't mean much to me. But as many as I've had, I wonder if it just takes long to go positive.

Just at point of giving up on it all. Worn down from not knowing and being worn down.

Astroman - I remember when I got the test results back concerning C3 and C4 looking into whether it is same as C3a and C4a. From what I could find, they are different. However, I believe I remember seeing that a high C3 or C4 can cause high C3a.

Mildly low C3 and C4 together can indicate lupus, especially lupus nephritis. This might explain the kidney issues I'm dealing with. Trying to find a doctor who can look past all the negative tests and figure out what is going on with possible lupus impacting kidneys.

Still wondering what Black Tara's tests showed when she mentioned positive autoimmune tests. And also still hoping treatment for Lyme may still help with autoimmune, if that is what it is.

Also to answer your question I don’t work in this area, but I have a strong technical background and as soon as I started to realize it was autoimmune I went deep down the rabbit hole. Met w several top neurologists and rheumatologists to pick their brains. Read some college text books on the immune system so that I could understand what all these papers were taking about, that was very helpful. And then just read whatever I could on autoimmune diseases. Dr K in Orange was instrumental and helping me see how Lyme triggers autoimmunity, he’s amazing. But outside of him and a few other top guys in this area I spoke to, most drs are completely underprepared to deal w these kinds of problems.

Started in 2013 w vestibular migraines. Then got fibromyalgia like muscle pain, anxiety, depression, fatigue, exercise intolerance, and then in 2019 autoimmune small fiber neuropathy (which is worse than all of the other symptoms combined).

I’m not sure what’s Lyme and what’s autoimmune anymore. I assumed the limb pain headaches and neuropsyche issues were Lyme, but I’ve read several papers recently that said for example 95% of patients w Sjogrens got neuropsyche issues (with mri results similar to mine, hippocampal and frontal lobe volume loss, but that’s common in Lyme also), and a high percent also get limb pain. So maybe I never had Lyme, or maybe Lyme triggered all my issues, or maybe there’s similarities because Lyme has such an autoimmune mechanism.

I never took plaquenil because it can cause psoriasis, and even tho it’s super low chance my dad and brother have it so I’m at risk and I’ll jump off a roof if I get that too. I’ve wondered if LDN will help, as it works on the inflammation end of things and my main problem right now is SFN which is controlled by b cells, but I might give it a shot anyway.

What symptoms do you have that you consider Lyme symptoms? Did you test positive for Lyme? You may be reacting to certain meds because they’re flaring your UCTD, not your Lyme

No I don’t have any specific symptoms of Sjogrens

I’m not sure what you mean about false negatives. That’s what I was trying to say in the other post, autoimmunity can present in any way. It’s not that you’re false negative, it’s that there’s no test for what you have. There’s literally hundreds, if not thousands of autoimmune diseases that we know about, and probably an infinite number of ways that they can present. Most don’t even have a test, and they probably only test you for 10, the most common (Sjogrens, lupus, etc). So it’s not that you’re false negative, it’s that you have an Undifferentiated Connective Tissue Disease, and there’s no test for that since it can be so many things. The goal is to try to find generic markers or footprint of autoimmunity, and you have. You have a low c4, positive ana and symptoms, you have autoimmunity.

For example, I like to look at the footprint of some of these connective tissue diseases. Lupus typically has high ana, low C4 and low RBC, White Blood Cell, and low platelet levels. I have all of those. I don’t think I have lupus as is defined by our definition of the symptom cluster, but I have something similar, and to me this confirms that I have autoimmunity, or undifferentiated connective tissue disease, or whatever you wanna call it.

As another example, I have autoimmune small fiber neuropathy. There’s no test for it, they have no idea what antibody causes it. Only reason we know it’s autoimmune is because I have this generic footprint of autoimmunity, and I respond to IVIG, so it must be autoimmune.

Yours does sound very close to lupus, and you may have that symptom cluster specifically with the antibodies we’ve isolated that predict it, or you may just have a very very similar connective tissue disease which is why you don’t test positive. That’s how I see it.


How aggressively have you treated the Lyme and bartonella? Did you get any improvement?

This discussion on complements really was a bit of an epiphany for me. It’s all over the medical literature that Lyme causes a spike in C4. Astro and several others can attest. It’s also true that connective tissue diseases can cause a drop in C4. We both have low C4, which to me tells me that the bacteria is no longer the problem, and trying to kill the Lyme probably won’t help, because it’s caused a connective tissue disease. Wanna bounce this off Dr K. I’ve always known in my gut this was the case for me, never wanted it to be true because it’s a grimmer prognosis.

Post Edited (dcd2103) : 1/5/2020 3:11:09 PM (GMT-7)

Anti dsDNA is specific for SLE, anti smith for SLE/MCTD, anti Ro for Sjogrens. Yours is undifferentiated, or unspecific, so you don’t have to have any of those markers. Maybe you’ll develop one later, but I wouldn’t get hung up on that. More surprised by never having a high sed rate or CRP, but as I mentioned in one of the earlier posts some of these autoimmune issues are non inflammatory. This stuff is crazy complex.


W respect to killing the Lyme, I really dunno. I have 3 positive IgG bands (41,58,63). All it means is I was exposed. I think any Lyme left in my body is residual, very small amounts, just enough to trigger the immune system. Combine that w working too hard, eating bad food and partying too much and my immune system was shot and that’s why it finally blew in 2013. I think destressing, fixing my gut exercise likely to have more of an impact on a connective tissue disease, but I will keep using animicrobial herbs and may even try one more antibiotic just to see, but I’m not holding out much hope. This autonomic dysfunction and small fiber neuropathy, however, will not be cured by antibiotics. Those darn B cells are so hard to correct, IVIG is my best shot

Been on turmeric and resveratrol. I think they seem to help, maybe? Kinda like what you said about LDN, tough to tell. Do you have any side effects from LDN? Can you drink on it?

Will check my numbers when I have a chance. I know my WBC are currently at 2.2. Platelets and RBC are always just on the edge. CRP usually normal but ESR often high.

IVIG is safe and good for Lyme with an autoimmune flavor. But it’s hard to get approval for, mine costs $15,000 a month. Seems like more and more drs are using it and figuring out how to get approval, but the odds are much better if you have demylenating nerve pain.

I think the gut definitely needs to be fixed. I’m 24hrs into a 5 day fast. Found some evidence that these rheumatological conditions can respond to fasting. My gut is def screwed up I think after 13y of living in NY and getting my food delivered, there are too many bacteria that crave sweets and processed food in me. Hopefully a 5 day fast purges some of them.

https://pdfs.semanticscholar.org/f0d7/e27d460154e2558f0547fb65c7bf544e7d9a.pdf

Your case is interesting because you have ACA (caused by Lyme) and tested positive for Lyme. You also now have developed this autoimmunity, which drs are telling you is connective tissue disease, which just goes to further prove the theory that Lyme causes these autoimmune diseases.

I texted my LLMD about complements in chronic Lyme. He said chronic Lyme causes low C4 (which doesn’t align w what I read but I trust him). He also said chronic Lyme mimics non-specific connective tissue disorders. So he would say you have post Lyme or autoimmune Lyme. Someone else might say you have a non specific connective tissue disease. In my opinion it’s all the same thing, autoimmunity.

Post Edited (dcd2103) : 1/6/2020 3:40:17 PM (GMT-7)