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

With Plaquenil you should see an eye Doc...get a baseline test and then yearly follow ups.

Plaquenil can cause eye issues. (Retinopathy)

Yes violets - we sometimes don't mention that untreated Lyme disease can do damage, too.

"One just has to be careful to go my ideal body weight and not true weight."

I'm confused about that statement.

Wouldn't you go by the weight you are currently when dosing the Plaquenil?
(Not what weight you should be?)

the right amswer to "is it lyme or autoimmune disease?" is "yes".

lyme is an autoimmume disease triggered by an infection. there is no guarantee that treating the infection will make your immune system return to normal, but it is your best chance. it is also logical that any treatment will have to start with removing the causes first, then maybe deal with the effects. but if you have positive dna then the cause is still there.

put it the other way around. fine let's say you treat it as an autoimmune disease. may i ask what treatment that is? there is no treatment that helps most autoimmune diseases by more than slowing it down by 20-30% while multiplying your chances to develop cancer in 10 years time....

take MS. even the best ms drug ocrevus, just slows down the disease. does not stop it.

compare that to lyme antibiotics treatment. there are people that have remained symptom free years after chronic lyme long term abx therapy...

So, what I don't understand - if it's autoimmune - then wouldn't our immune system be heightened?
Then how come we often can't produce the antibodies for Bb?
We've always 'talked' about it being an immune suppression.

That's how it's explained why we don't get a positive test result - we aren't producing the antibodies because of our immune system being suppressed...


That's my story...and I'm sticking to it...

JustPiccd -- You're also the first person I've encountered with the nucleolar ANA pattern. It worries me even though my rheumatologist told me not to focus on it. (It was a long time ago, so I don't remember exactly what she said -- but I think it was something about the patterns not being diagnostic.)

Because of the positive ANA, and because I didn't have an obvious CDC positive the first time I was tested for Lyme, I still feel a lot of uncertainty about what I have and how best to treat it. Most of the time I think it's Lyme and co. But sometimes I think that it's wishful thinking. Not that anyone would want to have Lyme, but it seems less scary to me than having a progressive, incurable autoimmune disease.

I have a couple of doctors who seem sure that I have Lyme based on other tests, even though none of them match CDC criteria. I did have a strong positive for Bartonella a while back. I also recently had a DNA Connexions test -- the one that tests for DNA of different pathogens in your urine -- and it came back positive for Borrelia recurrentis, babesia, and ehrlichia (but no Bartonella).

The inconsistency in test results and the disagreement among my doctors (as well as the fact that Borrelia recurrentis is supposedly very rare in the US) has made it harder for me to feel confident about any diagnosis. It also makes it hard to know what treatment plan to follow, when the treatment advised for an autoimmune disorder is contraindicated for someone with Lyme.

I really hope you find out what you have, and that it turns out to be treatable and tolerable.

Grain storage. ****. More of a Ram Dass type Philosoraptor. But that's pretty funny XD

On the topic of the typical tests, this is something I would love to know. As well as the age of culture used, if it's even standardized. It's well known that as culture ages there's a change from logarithmic growth to stationary phase characterized by persisters and microcolonies. This sort of implies a potential overall difference in antigenicity. A lot of factors that I'm not aware are even controlled. But if someone knows please share. Otherwise I'll be looking into this some time.

Lily, I suspect there could be a genetic link to connective tissue disease of some kind in my case, and maybe Lyme and co's pushed me into this pattern. But you are also the only person I've encountered with the nucleolar pattern, and it *seems* pretty rare from what I've read, so that's really interesting.

The LLMD I saw when I first had this ANA pattern said that he sees all kinds of autoimmune manifestations in Lyme and co's, so his immediate impression was that -- to paraphrase -- the great imitator of Lyme could readily imitate many different forms of autoimmunity.

One treatment sometimes used for scleroderma is IV Clindamycin, which I've been on for a while but it doesn't actually seem to be doing much for me (and while on it I was ANA pos. again with the nucleolar pattern), so I'm about to stop. But while steroids, etc. are def. counterindicated, some things might not be for both autoimmunity and Lyme -- like trying minocycline, IV Clinda, bee sting/apitherapy (which I'm hoping to try in warmer weather), rectal ozone? My thought is maybe there's something to hit both targets at once, though so far personally I haven't found it and am still looking too.

I really hope you get some clarity and *relief* soon too.

Missouri said...
Hahaha I couldn't resist. Every time I read your posts I always ask myself "what the heck is a Psilociraptor anyway? That dude must be into Jurassic Park or something"

I would love to know this too. I think I read or heard somewhere that all test kits are required to use the super old B31 samples directly from the CDC vault.

They've cocked up this whole thing from the beginning. 40 years ago they had no idea who carries these pathogens and now they still don't. Almost all published science on this disease is based on old garbage blood and culture samples from the CDC vault.

Yeah Trav and I were ranting on her other forum earlier about their self-fulfilling prophecy. The logic is pretty ridiculous when you see that all it's doing is just reinforcing old beliefs by eliminating the reporting of contradictory findings. The amount of emphasis on false positives which are theoretically highly unlikely compared to false negatives is absurd. I understand a false positive Elisa... but the western blot... that's almost a criminal assumption

And psilocybin + velociraptor = Psilociraptor. It's an old handle from before my sick days. Before Lyme forced me to be a health nut I was a bit of a traveler of the inner worlds... lol. Not quite as innocent as the grain storage dinosaur, but that will be my new story from now on

How do I find that other forum? Are you allowed to post links to it?