Positive for autoimmunity

[TJ_Fitz]

I'd been wondering if I didn't actually have an autoimmune condition as the root cause for my CFS. My doctor thought it was worth investigating also, and with my joint pain, I was able to get my insurance to cover a lab test panel for arthritis. I got the results back in mid-March. I was negative for arthritis, but had a positive ANA titer, homogeneous pattern at 1:320 dilution. This is quite a high result that often points to Lupus; however, two Lupus-specific tests in the panel were negative, so we're puzzled about what's going on. I'm scheduled to see a rheumatologist at the end of May, and hopefully he will be able to pin down what's going on. I had been back on the blood type diet for about a month before the blood draw, and now I'm wondering if the anti-inflammatory nature of the diet suppressed production of those auto-antibodies enough to cause a negative result. I may need to discontinue the protocol for a few days before future tests to get a clear picture of what's going on, but with this test result and the clinical picture, it seems obvious that I have significant auto-immune activity.

I can't say I'm glad to have an auto-immune condition, but I'm excited to finally have a positive test result and some clear indication about what's going wrong with my body. Auto-immune conditions are usually with you for the rest of your life, but if we can determine what condition I have, then at least we may be able to treat it well enough for me to start living a more normal and productive life, and that gives me hope.

 

[oision]

I'd been wondering if I didn't actually have an autoimmune condition as the root cause for my CFS. My doctor thought it was worth investigating also, and with my joint pain, I was able to get my insurance to cover a lab test panel for arthritis. I got the results back in mid-March. I was negative for arthritis, but had a positive ANA titer, homogeneous pattern at 1:320 dilution. This is quite a high result that often points to Lupus; however, two Lupus-specific tests in the panel were negative, so we're puzzled about what's going on. I'm scheduled to see a rheumatologist at the end of May, and hopefully he will be able to pin down what's going on. I had been back on the blood type diet for about a month before the blood draw, and now I'm wondering if the anti-inflammatory nature of the diet suppressed production of those auto-antibodies enough to cause a negative result. I may need to discontinue the protocol for a few days before future tests to get a clear picture of what's going on, but with this test result and the clinical picture, it seems obvious that I have significant auto-immune activity.

I can't say I'm glad to have an auto-immune condition, but I'm excited to finally have a positive test result and some clear indication about what's going wrong with my body. Auto-immune conditions are usually with you for the rest of your life, but if we can determine what condition I have, then at least we may be able to treat it well enough for me to start living a more normal and productive life, and that gives me hope.

What makes you think you have an auto immune condition and also what do you think is the antigen?

 

[TJ_Fitz]

What makes you think you have an auto immune condition and also what do you think is the antigen?

It feels like there is something attacking my connective tissue. For example, when I get myofascial release work done, it doesn't take long before things are stuck together again. Antinuclear antibody (ANA) is an good general indicator of autoimmunity. It attacks the nucleus of your own cells. I don't know what antigen is provoking the production of these antibodies, but lectins in food and incompletely digested proteins getting into circulation (because of leaky gut) could be factors.

 

[oision]

Do you get worse in relation to stress?

 

[TJ_Fitz]

Do you get worse in relation to stress?

Yes.

 

[oision]

Do you have problems with things such as light sensitivity heat intolerance etc pretty much anything that stimulates the activation of the HPA axis?

 

[TJ_Fitz]

Do you have problems with things such as light sensitivity heat intolerance etc pretty much anything that stimulates the activation of the HPA axis?

Also yes, but more with cold than heat, as I'm slender and tend to be cold-natured.

 

[oision]

well I believe I have worked out the cause of my CFS and that is an autoimmune condition where the antigen is a stress hormone.

below is a brief discussion as to why, so feel free to give it a read and tell me if this applies to your condition as well.

 

[TJ_Fitz]

well I believe I have worked out the cause of my CFS and that is an autoimmune condition where the antigen is a stress hormone.

below is a brief discussion as to why, so feel free to give it a read and tell me if this applies to your condition as well.

I wouldn't know. I hope that the rheumatologist can figure it out, but I'm out of my depth.

 

[ShyestofFlies]

I realize this is a bit wordy so I bolded the important words, sorry about that!

If you aren’t on a protocol for autoimmune medication you may be a candidate for the Avise panel. Depending on where you live you might be able to ask your rheumatologist about this panel and if see if it would be covered by insurance, etc.

The lab is called exagen diagnostics I believe they operate out of California and the blood has to be sent to them overnight. They have a website with instructions, how you can obtain the kit to bring to your blood draw center. You may have to call some blood draw places in advance to find out who will do the draw and what the fee is.

Not all rheums know or use the test widely, its still kind of a new thing and potentially selectively useful.

In some discussions with autoimmune group members elsewhere we’ve noticed people who have been on typical antimalarial drugs and the like tend to get negative results from this panel. (I don’t work for the company and my panel was completely negative, but I believe this test can be useful for some people.) Those of us with negative Avise Panels just went back to relying on traditional blood work since we’re already taking Plaquenil anyway (if it was helping).

Over the years I’ve met people whose blood has done all kinda of wonky stuff, AI are not known for being easy to diagnose and I like to think there’s a big part of artistry to the diagnosis based on clinical. Its also possible for some conditions to be diagnosed without positive blood, especially rarer autoimmune diseases or ones with recognized seronegative groups (such as RA).

There is also the large group of patients with an autoimmune disease called Undifferentiated Connective Tissue Disease (UCTD) which can start with some blood and symptoms and may not ever take on the full diagnostic criteria of one specific autoimmune CTD, but instead frankenstein bits and pieces of multiple AI diseases. It is its own diagnosis, but some people with it eventually split into one of the other specific diseases. It may not be mentioned to you if they think your diagnosis is fairly clear and meets the full criteria for one or more autoimmune diseases.

If you have an autoimmune disease (instead/additionally?) I hope they can work out a treatment plan which helps! Best of luck.

 

[TJ_Fitz]

Thank you for the suggestion. I'm not on any AI protocol yet, other than dietary and nutritional supplements, but those are only marginally effective. I haven't even met the rheumatologist yet, so I don't have an opinion about his competence, but I'm inclined to just agree to whatever he wants to do at first. If the tests he orders don't turn up anything and I get the feeling that he doesn't know what to try next, I may look at some other options.

 

[debs]

TJ_in_UT, did you find any answers? I, too, have 1:320 ANA and negative on the lupus specific tests. Rheumatologist considered offering Plaquenil but decided against it due to how I react badly to most meds. I asked if Lyme would cause positive ANA and he said no. Even so, I think it's from CFS+parasites and bacteria... Have you been tested for tick-borne infections? Babesia are parasites that could give symptoms like malaria or lupus. (Given they use anti-malarial drug to treat lupus, I am surprised no one has found a parasite that causes lupus. )

 

[TJ_Fitz]

TJ_in_UT, did you find any answers? I, too, have 1:320 ANA and negative on the lupus specific tests. Rheumatologist considered offering Plaquenil but decided against it due to how I react badly to most meds. I asked if Lyme would cause positive ANA and he said no. Even so, I think it's from CFS+parasites and bacteria... Have you been tested for tick-borne infections? Babesia are parasites that could give symptoms like malaria or lupus. (Given they use anti-malarial drug to treat lupus, I am surprised no one has found a parasite that causes lupus. )

I did get an answer: I have CIRS!

 

[Issie]

Lots written on CIRS here. Big part of some people issues. Look up post.

 

[debs]

I did get an answer: I have CIRS!

Thanks for the info. I had to look it up.

I re-read this thread and noticed this, you wrote "It feels like there is something attacking my connective tissue. For example, when I get myofascial release work done, it doesn't take long before things are stuck together again." Do you feel like things just clamp right up again? Do you have Lyme?

 

[Issie]

Need to delete this. [Deleted] | Health Rising's Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Forums
https://www.healthrising.org/forums/threads/need-to-delete-this-deleted.5408/

This post is how I learned of CIRS. This guy who wrote this has since learned he also had Lyme. He feels treating Lyme is helping him more than treating CIRS. That's why he wanted it deleted.

I was treated for both CIRS and Lyme. Alot of times, they go together.

 

[TJ_Fitz]

Thanks for the info. I had to look it up.

I re-read this thread and noticed this, you wrote "It feels like there is something attacking my connective tissue. For example, when I get myofascial release work done, it doesn't take long before things are stuck together again." Do you feel like things just clamp right up again? Do you have Lyme?

I does feel like the stuck tissues that are released in massage work tend to gradually get stuck again over time. I don't know if I have Lyme. My Igenix testing was negative, but even Igenix testing is hampered by the inherent limitations of antibody testing. I've been bitten by a multitude of ticks, so it's possible I do have Lyme and/or coinfections. I'll look closer at that if I get clear of water-damaged-building exposures for long enough and still don't resolve. I do have the HLA haplotypes that are believed to impart mold toxin and Lyme toxin susceptibility.

 

[Issie]

TJ, if you did the genetic testing for all the HLA types on Shoemaker testing and the Complement 3 and 4, that can tell if you are leaning towards having Lyme or not. Mine showed both, Lyme and mold possibly. We treated for both. Long process of cleaning up and recovery. At least was for me. But I have lots of complex other issues. They are finding some not responding to CIRS treatments and looking for other causes. I am one of those. Treating virus at the moment and that seems to be helping. The herb also helps what they call post Lyme.

 

[debs]

I am having trouble finding words right now, but I wanted to write because I have the same misery. If I have massage or when the chiropractor puts heat on my back, as soon as the heat or massage is removed, the muscles and connective tissue clamp right up again, within seconds. It's miserable. I haven't had mold testing done or any fancy, but I'm super sensitive to molds, chemicals, drugs, etc. I have recurring Lyme and past infection of Ehrlichiosis and who knows what else. I hate living in buildings. Any buildings. I like camping, and unfortuntely the ticks like me. We need a "leper colony" in the desert, haha.

Anyway, forget trying to test if you have Lyme or not. There are at least thirteen different genotypes of Lyme-causing bacteria, and they only test for B. burgdorferi and then you have the other co-infectious stuff, too.

 

[Apo Sci]

It isn't an either or situation, you can have both. I contracted ME in 2008 and systemic lupus erythematosis in 2014 (per my rheumatologist). The keys are onset and how the symptoms react to immunosuppressent medications. ME doesn't improve with the meds. Lupus does.