posted
I just got back from my llmd and I am pretty frustrated. I have been having muscle pain, twitching, burning skin, bad brain fog, bad anxiety and trouble sleeping.
She took me off factive but is continuing me on tindamax, cefnidir and added Azithromycin and mepron.
She said she has only been treating lyme for 2 years and when I first saw her she said I need I.V. and I am still on orals and getting worse. I have a lot of neuro problems that have gotten so bad that I have been to two ALS clinics in San Francisco but found out I do not have ALS.
Anyone have experiences with Azithromycin and mepron? Anyone in Norther California that could recommend I good LLMD because I really think I need someone who has had more experience with Lyme?
Posts: 39 | From Northern California | Registered: Mar 2010
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posted
Why are you frustrated? It sounds like your LLMD is following the Dr. B guidelines at ILADS.org . It's a protocol designed to go after Lyme and babesia.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Sounds like she is doing what she needs to do. How long have you been on the meds? You WILL get worse before you get better!!!! It can take months to get a turn around.. Ask her about the IVs and what her plan is. But you are on some good stuff.
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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posted
You are on the same combo as me; Mepron/Zith/Tindamax. I am being treated for babesia and have improved 50%.
There are many great doctors in N. CA., but it looks like this one knows what he/she is doing. Are you treating babesia/lyme? What are you doses of abx?
Posts: 964 | From san diego | Registered: Oct 2009
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posted
I am currently on Zith and Mepron...for babs. I just started this combo 2 weeks ago, so I can't really say if it is helping me or not.
Posts: 893 | From Florida | Registered: Dec 2008
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posted
Thanks for the responses. I have just been frustrated because I have been on orals since April and have just been getting worse. She thought that I should be one iv because of my neurological symptoms when we first met in April and I continue to get worse on orals...
Posts: 39 | From Northern California | Registered: Mar 2010
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
And when you ask her about going on IV, what does she say?
Personally - I made bigger strides at getting well on orals than I did on IV.
Also, since you have babesia - I believe getting rid of that before going on IV is a good move. My LLMD did it in that order, too.
How long were you sick prior to starting treatment?
It can take a long time, and it feels like forever.
Hang in there.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
Cactus- Symptoms really started to show up around July of 2009 but I can remember having problems since 2007.
I asked her about IV and she really didnt have a clear answer just that she wanted to give this a try. So maybe if this doesnt help with my symptoms than maybe she will want to start IV.
Posts: 39 | From Northern California | Registered: Mar 2010
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posted
Cactus- Symptoms really started to show up around July of 2009 but I can remember having problems since 2007.
I asked her about IV and she really didnt have a clear answer just that she wanted to give this a try. So maybe if this doesnt help with my symptoms than maybe she will want to start IV.
Posts: 39 | From Northern California | Registered: Mar 2010
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posted
Hi. I am in No. CA and like my Lyme doctor, who is in Sacramento. In this area we are fortunate to have some excellent LLMDs.
I am currently taking Azithromycin, Mepron, Artemisia, and A-Bab for Babesia - all oral meds. I've been on this combo, minus the A-Bab, since late September, 2009 and do not know how much longer I will be doing this before we change meds to tackle bartonella.
One of my Lyme friends who had severe neuro lyme and who has a well-known and well-respected LLMD was on oral meds for babesia for 18 months and just recently, having finally gotten good test results re. the babesia, has started on IV meds for the Lyme.
This is all a lesson in patience, I think. Hope you are feeling better soon.
Posts: 212 | From San Francisco Bay Area, California | Registered: Aug 2010
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