Hello All, I am posting this question on behalf of a friend whose daughter has Lyme. Her daughter is going to a new doctor for pain and he is telling her she needs to get tested for Lupus.
The question is: Because she has Lyme, won't she test as a false positive for Lupus?
Posted by Lymetoo (Member # 743) on :
She might. I know one of my initial tests was slightly positive for Lupus and later it turned to normal.
Has she been tested for Lyme?
Posted by Dstrenski (Member # 45397) on :
Hi, Im the friend D who hasva daughter w Lymes, bart and Erlichia. She was improving on Minocycline but had developed Tinnitus so we switched to Doxy and her joint pain worsened and period stopped! I read it can do that and cause 3x more cycsts in the joints.
She was home from school in california so I tried biomat and joint vits, coffee enema's, cholesterymine at night, lyrica 50 mg 2-3x a day then later increased it. Pain in joints and foot / hand spasms.
She felt good when saw dentist who puts her on Nitris for Lymes and pain dropped from a 8 to a 6 and slept 20 hrs. Since then back up to a 8/9.
Off Lyrica and saw a Rheumatologist who wants to test for auto immune:( i know Lymes mimics it and she tried to tell her Lymes is controversal:( She is on a low dose of Flexeril but not a big help yet!
Please advise for taking high doses of Vits makes her nauseous/ vomits. I want to use a colon clay to pull toxins out but need guidance on joint pain!!
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Breaking up the post for easier reading for many here -
[ 02-28-2015, 04:47 PM: Message edited by: Robin123 ]
Posted by lookup (Member # 44574) on :
Up
Posted by Lymetoo (Member # 743) on :
Let's put it this way ... If they diagnose her with Lupus and put her on steroids when the TRUE CAUSE is Lyme, then she will get worse.
The steroids may make her feel better at first but she could crash and be worse off in the long run.
She needs a true LLMD... one who knows how to treat the Lyme and all of its coinfections. She needs way more than minocycline or doxy.
There are many drug options. You could also try the herbal route.
At any case, be sure she gets treated for the real cause.
Lyrica will deplete magnesium big time (I found out the hard way) .. So up the magnesium or her pain will be amplified.
IMO, she needs a real LLMD, not a rheumatologist. Also IMO, lupus is lyme and co infections, but allopathic docs have zero clue because they have zero clue about lyme.
As for the vitamins, I'm no doc, but perhaps genetic testing would help uncover this issue for her. 23&me has a test that is $100. It helped me uncover a bunch of things.
Lymetoo is right about everything. Steroids are the worst thing any lyme patient could take and all the lyme docs know it. Yet that would likely be the first thing a rheumatologist would do. Again, they are clueless.
Posted by beaches (Member # 38251) on :
Lyme Disease can cause changes that ultimately lead to autoimmine diseases, but Lupus most certainly is not Lyme Disease.
There are blood tests to help confirm a diagnosis of Lupus, such as anti-DsDNA, C3 and C4 levels (not to be confused with labs used in Lyme testing that have similar names). In addition, skin and kidney biopsies can be performed to test for the presence of lupus antibodies.
What most people are familar with when it comes to testing for Lupus is the ANA test, which is not specific to Lupus. One can have an elevated ANA from thyroid disease, for example.
Of course if one (anyone, not just Lyme patients) can avoid steroids that is best.
HOWEVER, one serious and potentially fatal complication of Lupus is RENAL FAILURE. And the LIFE-SAVING treatment for that often involves high dose IV steroids.
Posted by beaches (Member # 38251) on :
This young lady IMO should most definitely be seen by a LLMD, given the dx of TBDs. But she should also be evaluated by a rheumatologist to determine the status, if any, of autoimmune disease activity.
Posted by beaches (Member # 38251) on :
And yes, of course I realize the vast majority of rheumatologists haven't a clue regarding Lyme Disease.
Why is that? How can they NOT when arthralgia is a MAJOR symptom of Lyme Disease?
Posted by Catgirl (Member # 31149) on :
Lookup, check out the first poster (ruth...) on this protomyxzoa site (below 21 thoughts on "Introduction to Protomyxzoa").
Most sincere thanks to everybody for your input. I'll give dstrenski a heads up that the thread did come back again with more replies.
Catgirl, thanks for the link.
Posted by Robin123 (Member # 9197) on :
Dstrenski, taking turmeric helps alleviate my joint pain. I get it in bulk at the healthfood store and dip empty capsules into it.
Some people also respond to teasel root tincture drops taken orally.
Posted by Dstrenski (Member # 45397) on :
Thank you everyone! dStrenski
Posted by beaches (Member # 38251) on :
Dstrenski, best of luck to you and your daughter. It is awful seeing your child suffer.
One thing you might want to consider for her is low dose naltrexone (LDN). Google it and you will find the homepage.
LDN helps to stop the autoimmune response that can occur due to Lyme. An integrative doc or a good LLMD would be the one to prescribe this for your daughter.
You have to gradually titrate up from 1 mg to 3 or 4 mg. It is not covered by insurance but it is relatively inexpensive - $30-$40/month.
My oldest takes it because she is prone to autoimmune issues. I think that was determined via an HLA-DR test. That was so many years ago so without referring back to my notes I can't be sure.
Posted by beaches (Member # 38251) on :
Robin, what brand of turmeric do you take? About how many mg do you estimate is in each capsule?