My llmd called me that he wants me to test for auto immune as he believes I've gone auto-immune.
He wants me to stop antibiotics for now.
he told me he saw certain markers for auto immune, but didn't tell me what kind.
He sending me for blood work.
Does he mean Lupus? His scripts seem to indicate he's testing for LUpus!
I was on IV Zith and IM bicilin. Couldn't take orals becasue of colon issues.
I do have chills and fatigue but it could be Lyme too.
I have to wait till July 4th weekend is over to do the tests.
I'm just so worried.
Has anybody been through this? Is this survivable?
And a happy July 4th to you all!
Posted by Tammy N. (Member # 26835) on :
I think just about all of us here have auto-immunity. I had some things show up on the Lupus panel as well, but my doc says she sees it a lot, and it gets better with treatment.
I was scared at first too....not I don't worry about it.
Also, I take LDN, which is a great immune modulator. Look into it. It seems all the best integrative practitioners are big fans of it. It is for auto-immunity.
Take good care.
Posted by Lymetoo (Member # 743) on :
For many, the auto-immune tests will go back to normal once the Lyme is properly treated. You could also have babesia.. sure sounds like it.
Make sure you've been treated for ALL coinfections!!!
There are many illnesses that are auto-immune. I have Sjogren's, but I don't treat it. I'm not about to take prednisone and plaquenil and I do not get along well!
Posted by Talktel (Member # 7980) on :
I was treating Lyme and babs. I don't understand why this is showing up with treatment. I've been treating for ten years.
for babs I'm on mepron, cryptolepsis and artemesinin.
I've treated for so many co-infections too from RMSF to Mycoplasma pneumonia and bartenalla etc.
So this is happening with all the treatment.
I had showed the scripts thae LLMD gave me to test to my chiro and he says those scripts are to test lupus.
I have pain in my knees but that can be Lyme...or Lupus.
So I don't know what's going on.
Posted by Talktel (Member # 7980) on :
BTW, I am taking LDN as the doc perscribed.
Posted by Ellen101 (Member # 35432) on :
Why can't your pain in your knees be lyme or lupus?
Posted by Talktel (Member # 7980) on :
pain in the knees is either Lyme or Lupus. I would have assumed its Lyme but the chiro told me it could be Lupus too.
My knees were never a primary issue before. It ws neurological with some joint pain.
I assumed the Lyme pain shifted to my knees.
Now I don't know what's going on.
Posted by Lymetoo (Member # 743) on :
It's probably Lyme arthritis .. that may not go away.
Keep us posted!
Posted by Shiela (Member # 28681) on :
My LLND seems to think I may have some symptoms of connective tissue disorder. I just went to a Rheumatologist who did some specific tests. Waiting for results now but it's very comforting to know that Lupus symptoms can go away as one gets better from Lyme.
Posted by Talktel (Member # 7980) on :
Can Lupus go away if one improves with Lyme? So why is my lLMD taking me off meds?
I thought I was doing better with Lyme this past winter. I was definitely better with s my old personality and energy back. And then I slid again.
Maybe because of lupus? breathing issues, sweats and chills could be from both.
Posted by Catgirl (Member # 31149) on :
I agree with Tammy, I think just about all of us have auto immunity (or on the way). Personally, I think lupus is lyme unchecked. You've been treating, but lyme and genes and exposure to toxins and even parasites, everything combined affects each of us differently. It's just so complex.
Chills and fatigue sounds like babs. I'm treating with mepron too, but I still have this. I suspect it's proto (protmyxzoa) and/or another kind of babs. I think a lot of patients with babs-like symptoms have proto. I tested negative, but still think it's there. All tests are fallible, IMO.
Of course there are other factors too. I wish I had never done prednesone.
Posted by Catgirl (Member # 31149) on :
Have you gone after parasites yet (really improves my breathing issues/sinuses)? Ivermectin helps knock them back, and also knocks my babs symptoms (or proto) back too.
Posted by Talktel (Member # 7980) on :
Hi,
I haven't gone after parasites. My LLMD doesn't fel I have it.
I also have colon issues so I'm so wary of anything that can give me diarreah.
Chills, sweats and fatigue definitely sound like babs. But after what he told me about Lupus, I googled it and it can be that too. So I may have BOTH! That's scary!
I hreard that they treat Lupus with antimalarials, as part of their treatment.
Well, I'm doing that now. But if he stop the Zith, how will the mepron work?
I feel its damned if you do and damned if you don't.
Posted by Catgirl (Member # 31149) on :
Whoops, I meant I'm treating with malarone. It seems to work better for me than mepron. It may be time for you to move onto that med. It and parasite treatment have knocked my babs way down.
Parasites are now considered the number 1 co infection. This was stated at the ILADS meeting last fall. This is no small statement. That means practically everyone has them. IMO, everyone on the planet has them. They are part of nature. We just have an over abundance of them and have to knock them back.
Doctors miss them all the time. My doc missed them too. I had to push the issue and try stuff myself until I had evidence. They are a huge part of lyme and autoimmune IMO. And parasite tests are extremely inaccurate. You cannot rely on tests.
Posted by Lymetoo (Member # 743) on :
I have NO IDEA why your LLMD is taking you off the meds. Maybe just to see what happens.
The "anti-malarials" you speak of are mainly (perhaps ONLY) plaquenil.
Posted by Talktel (Member # 7980) on :
Lymetoo,
He said he was taking me off IV zith and bicillin becaue my liver and kidneys must be saturated, and he doesn't want me to end up on dialysis.
I think he was trying to scare me into going off it.
On his directions for me, he wrote to go off it for at least 10 days so maybe he will put me on meds at some future point.
So he must have lupus in mind because he specifically mentioned kidneys.
Is plaquenil what they treat Lupus with?
Posted by Lymetoo (Member # 743) on :
It mentions Lupus.
Posted by Talktel (Member # 7980) on :
Hi everyone,
I spoke to my doc on Friday,
I have to go for bloodworks, but he told me that he doesn't suspect Lupus, but that the Lyme went auto immune. Something to do with white blood cells.
So at least he doesn't think I have Lupus!
But autoimmune Lyme isn't exactly great neither.
Does anyone have autoimmune Lyme? How is that treated? With antibiotics
I'll do the tests on Monday, and I'm supposed to check in with him next Friday, and he'll tell me then how to proceed.
Untill then no abx.
Now why is my breathing so bad if I'm on babs meds? Inhalors don't work neither.
But at least its not Lupus along with the LYme.
What a relief.
Posted by Razzle (Member # 30398) on :
Parasites...
Not all doctors have a clue about them...
But I'd be bugging my doctor to look at parasite treatment if I were you...
Posted by Talktel (Member # 7980) on :
Parasites could be causing the breathing and the colon issues?
would treating it cause diarreah? Is it hard to take? Maybe this LLMD is not so knowledgable about it.
Is chronic Lyme by definition autoimmune Lyme?
I'm having rapid deterioration off the dose of antibiotics and its scary.
THen again, I wasn't that great lately even with the antibiotics.
I feel like I'm at the end of the road.
Posted by Lymetoo (Member # 743) on :
There is no such thing as "auto-immune Lyme"... that is a new term being used by the IDSA.
I think Steere coined the phrase. Find a new doc!
Posted by Robin123 (Member # 9197) on :
Pain in the knees can come with Lyme - it likes the joints. Best of all if you can treat the Lyme.
I'm keeping my knee symptoms at bay by taking turmeric capsules - I get it in bulk at the healthfood store and put it in capsules - I can feel relief fairly quickly after taking a capsule.
I also discovered that lymph drainage massage eases the joint pain for a couple weeks.
If you can get one of those red light tools - 660nm red light - and wave it around the knee joints, that also reduces pain. I do that before going to bed.
Posted by Talktel (Member # 7980) on :
I thought it was strange that he used auto immune for LYme. I also thought it was IDSA.
But this is a guy that was trained by the guru in Lyme disease. He definitely belongs to ILADS.
There isn't another doc to go to. For various reasons, I have to stick with him, unless I go to adifferent state or fly to a different coast.
Posted by Talktel (Member # 7980) on :
I have tumeric at home. I can try that.
but more worrisome is my other issues.
Posted by Shiela (Member # 28681) on :
I had knee pain (and hips) for a while too. I'm taking glucosamine. I've been on minocycline, zithromax, clarithromycin, samento, cayanne capsules and other supplements. The knee pain went away and the hip pain is almost gone.
Posted by Lymetoo (Member # 743) on :
I wonder what happened to Talktel?
Posted by lax mom (Member # 38743) on :
She's still hanging in there.
Sending some positive thoughts your way Talktel!
Posted by ktkdommer (Member # 29020) on :
I was first diagnosed with Lupus according to high ANA titer and symptoms. 9 years late was diagnosed with Lyme and treated for 3 years. I have no joint pain anymore and fatigue is under control My ANA has been negative 2 times.
I believe I never had Lupus but a misdiagnosis.
Posted by Talktel (Member # 7980) on :
Hi all,
I didn't get the atual results from my doctor, who just told me that my electrolytes were off.
I'm assuming that if I had lupus they might have said something.
I have an appointment this Tuesday.
I'm back on IV zith and IM bicillin.-doctors instructions.
I'll keep you posted.
I couldn't post because I was so sick, I felt like I was blacking out.
Could be a herx from restarting the meds after two weeks off?
I wqas taking cholestyromine according to doc's instruction 2x a day, because of diarreah/colon issues.
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