posted
Sorry, I am new to this forum. I put this post in the wrong place and was advised to place it here. Again sorry for the redundency. I wanted to know if I had Lyme would I get a positive ANA test result? My Rheumy says because I have a positive ANA then I have UCTD. I do not even know what this means except that they do not know what I have but refuse to do a Lyme western Blot test. Thanks. Posts: 65 | From Just Maine | Registered: Jul 2012
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I was MISdiagnosed with UCTD, too, by a rheumatologist. Then they said "probably lupus." Wrong again. Three tick-borne infections finally came to light after I lost years of life and jobs.
Another rheumatologis misdiagnosed mood disorder because I cried in his office "just because of being tired" and on their question form, "listed too many symptoms for any one person to have in a lifetime" - according to him.
Please do not rely on a rheumatologist to understand how lyme affects the immune response. The vast majority know nothing about lyme and TBD. There are only a couple ILADS-educated LL rheumatologists in the country.
Lyme can CAUSE all kinds of Connective Tissue damage. That's very well known to LLMDs.
Google:
Borrelia, ANA &
Borrelia, Connective Tissue
And read what LL author, Pamela Weintraub says about the how lyme causes immune abnormalities in the book "Cure Unknown"
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Be especially careful of doctors who are not lyme literate prescribing any STEROIDS. Steroids are NOT good for those with lyme and can do a lot of damage.
Also, do not let anyone talk you into a lumbar puncture (spinal tap) to test for lyme. That is a horrible test with a very poor ability regarding lyme detection. But many insist upon it, mostly to then turn you away from treatment. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
I was ANA positive for years, diagnosed with lupus. Then 2 years ago I was properly diagnosed with Lyme disease and treated. My ANA is negative now after 10 years. I don't have any lupus symptoms anymore and my Lyme disease issues are almost cleared up.
Get with a good doctor and get well!
-------------------- 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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posted
Once you understand how this disease works, you can understand the symptoms. Lyme bacteria can burrow into connective tissue, inflaming and damaging it.
Most doctors have no clue what's going on with us. We have to go see Lyme-literate doctors, and Lymenetters can PM you with referrals, in Seeking A Doctor.
posted
Again thank you all for helping me along on this cruddy journey. You are all a life saver. What a great site this is, so informed, all about Lyme and truly supportive. I am sure you have said the same things over and over and over... to newbies like me. Anyway yes my Rheumy also diagnose me with UCTD and said that I did not fill the criteria for Lupus but I probably have it. I am currently on steroids 5mg of Prednisone since Dec. My first appointment with my new doctor who I believe knows his stuff is on Sept 27 but I am on a cancellation list. I wonder if I should start reducing the steroid by half? My concern has a most probably will start antibiotics, is that the pain will come back full force if I get rid of all the meds. Scary!
Posts: 65 | From Just Maine | Registered: Jul 2012
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posted
I would start weaning off, but with your Dr's guidance.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Yes, taper off very slowly.
I would also add OLE, Fish oil, Magnesium, certain other nutrients included in Burrascano's guidelines.
These will help address your comfort level and also help to prepare you for your LLMD appt. next month. You might call that office and ask if they have certain articles, books, diets, supplements that are suggested during this interim.
Buhner ("Buh" is pronounced as first syllable of "beautiful") highlights various herbs - along with fabulous explanations of how lyme & other tick-borne or stealth infections work.
�� Nutritional Supplements in Disseminated Lyme Disease ��
J.J. Burrascano, Jr., MD (2008) - Four pages
==============================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
Both gluten and dairy can cause tremendous problems for many who have chronic infections. Many LLMDs strongly suggest their patients be gluten-free for treatment to stand a better chance.
Even if you are not a genetic celiac ( see www.celiac.com ) you can benefit.
Same with dairy. Even if not a true allergy, many have seen remarkable health improvement by avoiding dairy. Goat cheese, though, is sometimes tolerated but best to clear it all out for a while and see. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
What a wealth of information! I finally feel like I have a chance. Pardon the emotional outburst but this being sick thing has been a terrible decline. I will begin reading, taking supplements per Dr. B, cut back slowly on RXs and check in with the office regarding reading material and other information. Thank you so much.
Posts: 65 | From Just Maine | Registered: Jul 2012
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posted
KTKDommer~ Could you please tell me your story? Your story seems so similiar to mine. I have a high ANA they have diagnosed me with Undifferienciated Connective Tissue Disease, this means I do not fill the full criteria for Lupus. But they are treating me with the protocol for Lupus, steroids, Plaquenil and Methotrexate. I just stopped taking Prednisone. Was on 5mg, then 2.5 now none. I do take 500 mg of magnesium. Really sick still. Keebler! You are amazing with all your info and sites. I will be busy readking and learning. Thankyou!
Posts: 65 | From Just Maine | Registered: Jul 2012
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