how do you know if it's Lyme or an autoimmune issue? receiving conflicting advice

Go with your gut instincts and also with the tests!

You say you have tests that show lyme (positive for Babesia, ehrlichia, and Borrellia something (not burgdorferi)). That should be enough to convince you right there.

But, you are the only one that can decide what is right for you. I know you think you might be making a mistake, but sometimes we just have to go and do it and we can always change if we feel like it later.

I've never had a Lyme test that was positive by CDC standards, although a couple of doctors still think my tests and symptoms indicated Lyme.

I think a lot of us on this forum could type those words. I never was CDC positive. Lyme is sneaky and can hide. I definitely had lyme. I think the statistic says that over 50% (someone correct me) of people with lyme never see a tick or have a bull's eye.

Also lyme can mimic auto-immune diseases. Notice I typed diseases. There are many things that doctors think we "might" have, when in fact it is lyme. Remember not many doctors are educated in lyme. Therefore, if they did not study it, they think it does not exist.

Lilypanda,

DNA doesn't lie. DNA Connexions is a DNA test. Assume that you have every infection you tested positive for. Do NOT assume you don't have any other infections, including bartonella, just because you did not test positive with DNA Connexions. A negative on their test only means no DNA for bartonella was found in the sample they tested. You already have a positive blood test for bartonella.

I have the exact same type of joint symptoms and dry eyes and mouth. Those symptoms are most likely from bartonella.

As for the positive ANA, Lyme and coinfections alter the immune system and create dysfunctional immune responses in the body. These autoimmune tendencies can go away once the infections have been adequately treated for at least several months after symptoms have stopped. Please be aware that taking steroids or any type of immune suppressing drug will only allow the infections to go uncontrolled, as you will be suppressing your immune system. This is exactly the kind of drugs that Rheumotologists prescribe for autoimmune conditions. Instead of trying to find the reason WHY your immune system is malfunctioning (infections), they choose to push drugs to turn the immune response off.

There are herbs that can effectively redirect the immune system and cytokine responses back to normal. Stephen Buhner has herbal protocols to address the specific cytokines involved in each of the infections. It would be wise, IMO, to use those even if you choose to treat the infections with antibiotics. The herbs work very well along with the antibiotics.

I recommend getting Stephen Buhner's books on Healing Lyme and the various coinfections (3 books) if you want to understand these infections and what they do in the body and to have reference books with the full protocols for the infections.

Post Edited (WalkingbyFaith) : 1/3/2018 11:32:51 AM (GMT-7)

You have positive bands for lyme PLUS positive bart test and Babesia. That's all you need.
You have lyme disease....and coinfections.

I wouldn't pursue the autoimmune avenue...the steroids will suppress your immune system...and could cause more damage than just waiting to treat. Steroids are contraindicated with lyme disease..

Many people with lyme have positive ANA show up.

Seeing if you can be on a waitlist for a cancellation is a good idea...people do cancel.

Just chiming in here to say that I did, absolutely, get lyme, and pain in my fingers and toes, and up from those to my body, are my main complaint. It's also in my chest. There is no swelling.

Connective tissue disorder - hmm, that's a good name for it. I think the medical establishment is starting to accept that lyme can cause peripheral neuropathy (which is what my first inclination was, my doctor thought it was tendinitis, but there's no such thing as chronic systemic tendinitis). Maybe next they'll accept that lyme can cause CTD.

I read a journal article a few months ago that said they did a biopsy of a lyme patient and found lyme bacteria in tissue from her tendons. Can't find the article again right now, but I found it interesting.

Oh, and I've been thoroughly checked for RA and everything else under the sun. I'm perfectly healthy - on paper.

ETA: Oh, yeah I found an old thread with a link to the study /www.healingwell.com/community/default.aspx?f=30&m=1897585

Post Edited (Eiren) : 1/4/2018 2:44:55 AM (GMT-7)

Everyone has given you great advice. I've questioned diagnosis the same as you. My symptoms line up exactly with MS.

A good LLMD should be doing a whole lot more than just killing bugs. Some of the cofactors (like metals, mold, parasites, bad detox, vitamin/mineral imbalances, etc) can be disrupting the immune system so that it doesn't work properly. A rheumy would just treat symptom which is not at all fixing an issue. And if you just ignore the problem, others will crop up. I know someone with MS who just developed cancer.

Testing adds so much confusion to an already confusing diagnosis. It is very hard to know who to trust. I've had an indeterminite IGeneX test (twice - but at least the bands were consistent), negative Labcorp WB (3 or 4 times), positive c6 ELISA, and fully negative on DNA Connexions. I pretty much only see docs that support the Lyme diagnosis now - LL or integrative/functional type docs. Mainstream docs cause me to get too upset.

I find herbs are more easy on my body and help alleviate symptoms. But I don't feel they are curing anything because I will backslide when I stop taking them. Possibly because I have not addressed the root cause or taken a high enough dose.

It takes years to figure this all out. I am entering my third year and still finding pieces to the puzzle.

"...........This is exactly the kind of drugs that Rheumotologists prescribe for autoimmune conditions. Instead of trying to find the reason WHY your immune system is malfunctioning (infections), they choose to push drugs to turn the immune response off............."

I know someone who almost recently died from a Rhumy Rx'ing steriods for them!

They had to have a heart valve replaced because of these drugs. Turns out they didnt have autoimmune issues, but DID have a hidden Staph bacterial infection which further got out of control and spread to the heart FROM steriods. Would have died a few days later, as heart could no longer pump enough blood.

There were no positive autoimmune antibodies, yet the Rhumy Rx'ed steriods, ???

If more Drs had logical sense like say, a good mechanic or "hands on person", vs somtimes only book smarts, these things would not happen as often.

Thank you so much for all these replies. I've read every reply more than once, in detail, and am taking to heart the thoughts and advice provided.

I have a tendency to overthink things, and I also have a tendency to doubt my own instincts. I have friends who are doctors (and thought of going to med school myself, when I was in college), and in many ways I have faith in Western medicine. So when my rheumatologist (who is truly well-meaning) dismisses the possibility of Lyme so adamantly, I begin to doubt myself.

For example, she told me that Lyme does not typically cause pain in multiple small joints (such as fingers and toes), but generally affects one or two large joints, such as the knee. When I tell her that I've seen many online accounts of people with Lyme and co-infections who have finger/hand pain, she insists that they likely have undiagnosed rheumatoid arthritis or other autoimmune issues.

"I'm not saying they didn't also have Lyme at some point," she said. "But there are studies showing that many people being treated for Lyme actually have rheumatoid arthritis, and they're missing the chance to treat that and prevent joint damage."

I asked about the theory that a tick-borne infection might be one cause of RA. She said that it was possible, but that once the RA was in place, treating the Lyme infection wouldn't make the RA go away.

At this point, based on the DNA Connexions test results and the posts here, I believe that I have Lyme and co-infections. But there's a part of me that's also scared that maybe my rheumatologist is right: that if I don't aggressively treat the joint pain now (with prednisone or methotrexate or plaquenil or whatever) that I'll have permanent damage to my joints and my hands will be deformed.

A few specific responses:
notsosicklygirl -- I did see two different rheumatologists, and I've had blood tests run repeatedly (and even had a lip biopsy done to test for Sjogren's Syndrome). Thus far, all the tests have been negative, aside from the ANA. But the rheumatologists said that it's possible to have an AI disorder without positive test results; and that sometimes the test results are negative until the illness is more advanced.

I will call and ask to be put on a cancellation list, as you suggested. Thank you for the advice.

Traveler -- I remember from other posts that you said that you'd had the dry eyes/mouth. Am I remembering correctly that those improved with proper treatment?

WalkingbyFaith -- You said that you have the same joint pain. Do you mean you have the finger/hand pain? I rarely see anyone else mention that. Have you had any improvement in the joint pain or the dry eyes/mouth so far? And thank you for the Buhner suggestions. I have his book that covers bartonella and have been using some of the recommended supplements (though I've been using alcohol-free extracts, which I think aren't as strong as the tinctures). I'll pick up the others as well.

Thank you again, to everyone, for your replies.

"treating the Lyme infection wouldn't make the RA go away. "

Completely unsubstantiated claim. The issue here is that many animal models have shown that current treatment is likely not effective in post-disseminated Lyme which may explain the persisting symptoms in treated people. This doesn't mean treating the infection won't make the RA go away. It means treating the infection inadequately won't make the RA go away (duh). Whether or not adequate treatment produces symptomatic relief can not really be assessed when there is no current agreement on how to achieve eradication of the infection or even how to measure it.

I too have finger joint pain. Or maybe I would describe it more as an ache. I have a hard time braiding my daughters' hair anymore. I have no autoimmune markers. I also have burning eyes - almost feels like my eyes are super tired. I've attributed the dry eyes and mouth to being somewhat dehydrated since I have frequent urination.

Many LLMD's prescribe plaquenil - it does have an effect on Lyme & co. You could specifically ask for that if it would make you feel better.

Post Edited (k07) : 1/4/2018 11:22:35 AM (GMT-7)

JustPiccd -- My ANA pattern has consistently come back as nucleolar. (The last time, it came back as both nucleolar and speckled.) Nucleolar is supposedly associated with scleroderma, which is honestly terrifying to me.

Both rheumatologists did extensive bloodwork to look for scleroderma markers, and also looked for other indicia of scleroderma (e.g., abnormalities in my cuticles). All negative so far, and both doctors seem to think it's very unlikely. But the consistency of the nucleolar ANA pattern still worries me.

I'm nervous about plaquenil because of the risk of retinal damage. Although doctors always describe this risk as very low, more recent studies suggest that it's almost inevitable once a certain lifetime cumulative dose is reached. Also, my sister-in-law was given plaquenil years ago when she was treated for Lyme, and she developed retinal thinning after just a few months.

k07 -- It was actually when I was braiding my daughter's hair last week that I first realized how bad the finger discomfort was getting. I'd been mostly ignoring it, assuming it would disappear soon as it had before. But it was uncomfortable enough to interfere with braiding, and a couple of my fingers actually felt stiff/weak.

In addition to noticing swelling in my finger joints for the first time yesterday, I'm starting to feel pain/discomfort all over my body right now. (Until a couple of hours ago, I just had aching in my fingers, wrists, toes, ankles, and knees -- but it was only constant in my fingers.) I really feel as if I've been hit by a bus. I'm a little scared and not sure what to do.

WalkingByFaith- ["Glad to hear you have Buhner's bartonella book. You will find he mentions those joints and also tendon pain. After I got worsened joint stiffness in the elbows and had tender spots that hurt when I laid my arm down on the table, it finally registered that the stiffness was likely coming from the tendons as opposed to the joints themselves."]


You hit the nail on the head. In many cases, "lyme joint pain", is from the stiff and shortened tendons pulling on the joint. You can feel it in the joint, but in this case, thats not the cause.

You have to be very analytical in body pain. You need to poke and prod areas "testing" tissues for density and unusual tension. Many areas of the body will only be painful when pressure is applied, even if they are causing referred, constant pain to another location.

I've been repairing and elongating tendons using several different techniques for about four-five years now as opposed to just muscle work. This has improved all my larger joints. Its too time time and $ involved to rely solely on PT/chiros ect for this, so I had to learn this. You-Tube is awesome.

Post Edited (astroman) : 1/4/2018 7:26:06 PM (GMT-7)