posted
I posted the other day about being on low dose of prednisone for the past year due to 25+ years with RA. I'm somewhat convinced that this was truly just RA as I have a very classical case of it and have hardly had any other health issues and even when not on prednisone I had lots and lots of energy for years.
However, about 6 weeks ago, I had a very sudden onset of tension headaches along with brain fog. I tested positive to IgM 23 and 41. I made an appt with Dr. C in CT for 11/4 but what am I supposed to do in the meantime as from reading I'm pretty convinced I have babesia. My ID dr ordered another western blot and suggested a spinal tap (which I will refuse since I'm CDC positive, I think), however, I'm sure she will just treat me thte regular lyme way. Is this just a waste of time since it would seem like I have the babesia? What do I do until 11/4? Or do I ask her to test for me for babesia?
Posts: 7 | From Stamford, CT | Registered: Sep 2010
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posted
The very worst thing you can do for lyme is to use immune suppressing drugs, like prednisone.
Have you visited the www.roadback.org website? They can help guide you with RA and lyme/babesia.
You may want to consider starting on minocycline or doxycycline, while you wait to see Dr. C.
Posts: 964 | From san diego | Registered: Oct 2009
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posted
Since you have a positive Lyme test, would your doctor order tests for co-infections while you are awaiting your first appointment? If you have a good GP (who ordered your Lyme test?) maybe they would do this. That is how I started since I wasn't willing to wait the two months for the LLMD appointment to get tested.
Posts: 212 | From San Francisco Bay Area, California | Registered: Aug 2010
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posted
Totally reasonable to have your PCP run a test for babesia and erlichiosis given your symptoms/test results.
I'd start on the treatment they are willing to give you. Better than nothing while you wait not to mention MANY people get better treating lyme with the typical 100mg doxy twice a day.
Posts: 561 | From mass | Registered: Jul 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
You most certainly have Lyme Disease, and probably another co-infection. Remember, the "Classical" cases of Arthritis were seen in Lyme Connecticut when it was discovered.
The only reason it wasn't ignored was because mothers systematically recognized a pattern of "many" kids having it together.
Don't give up hope just yet, it may in-fact be that your body type just gets Nailed in the Joints rather than other body parts -- which happens.
Ok? Stick with the Lyme route, and follow up with co-infections with a LLMD specialist. The worst case scenario is you flare-up and suffer some.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Thanks guys. I was so stressed out yesterday and today. I couldn't stop crying and now I feel this is a bit more manageable to have a plan. Yes, I will ask them to run the test for the co-infections and allow myself to be treated with Doxy.
I didn't know many people got better ever. From all this reading, i was feeling totally discouraged.
I'm thinking babesia because of the sudden onset of symptoms which includes major tension headaches about 6 weeks ago which clouds my ability to think. I also have some weird tongue problems where I feel like I'm talking funny but I'm not and that may be from severe anxiety from what I read since I've gone from thinking I had a brain tumor to thinking my life is practically over because of the LD.
I'm aware that prednisone is a big no, no and am tapering. When I found out last week, I was down to 3.5/4 mg a day which I reduced from 5 mg a week ago so I'm thinking in a few days, I could try 2.5 mg/day and continue tapering from there.
Posts: 7 | From Stamford, CT | Registered: Sep 2010
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Lyme won't be the end of your life. We're getting closer to figuring out how to solve the problem. Antibiotics are the first line of defense.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Don't try to taper too quickly. At least you are on a very low dosage.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
My husband did have a positive babs microti test through Quest I think. The other option is to get the kit from Igenex and ask for the babesia FISH test and the babesia duncani test. You only need a doc to sign the requisition and receive the results for you. You can take the kit to the local hospital and they will draw the blood.
Don't worry - there are many options for treatment and people do get well. Spend this time researching the alternative things (rife, herbs, detox, diet) as well, b/c they can be used along with abx, if you choose to go that route.
I think Lyme is a much better diagnosis to have than RA! You can become symptom free.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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