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!
-------------------- RI Posts: 440 | From New York | Registered: Sep 2005
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
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.
Posts: 2238 | From East Coast | Registered: Jul 2010
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posted
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!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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posted
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.
-------------------- I'm not there yet but I'm closer than I was yesterday.---- Lyme Band 31,41,58. Being treated for Lyme and Bartonella. Posts: 149 | From Maine | Registered: Oct 2010
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posted
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.
-------------------- RI Posts: 440 | From New York | Registered: Sep 2005
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
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.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
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.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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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.
-------------------- RI Posts: 440 | From New York | Registered: Sep 2005
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
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.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
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.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
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.
-------------------- I'm not there yet but I'm closer than I was yesterday.---- Lyme Band 31,41,58. Being treated for Lyme and Bartonella. Posts: 149 | From Maine | Registered: Oct 2010
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
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.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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