I have an appointment tomorrow with my LLMD and do not know what to do!
I have been in treatment with my LLMD for @ a year and a half after being misdiagnosed with a variety of illness for 10+ years by multiple doctors. I was diagnosed with Lyme in May 2010.
I went off all antibiotics in April for 2+ months to clear yeast infection (in my ears!).
While off antibiotics the joint pain in my knees and elbows returned as well as sore feet.
In June I started Mepron and Biaxon and continue to be on this combination; however, I feel like I did while I was off all antibiotics. Joint pain has returned.
In addition I periodically have numbness in hands and feet (all areas of pain are inconsistent-I never know what is going to hurt or when, nor for for how long!).
I also take super B complex and VSL#3-DS.
I work full time and most days just do not feel well!
I have been on so many combinations of antibiotics. At one point I felt better (while on being treated for Bart before getting yeast infection); but, now it's hard to tell which combination of antibiotics seemed to work...
Bart and Babs testing negative; WB last time only came up with IGG Band 39. Have had 41Ks on IGG & IGM preiously. Nothing too specular on the WBs!! Borderline Elisa.
Cannot afford Ingnex Labs and LLMD has said that at this point it doesn't matter because I present clinically with Lyme. And thus, being treated for Lyme, Bart, Babs, due to clinical symptoms.
All in all it's making me somewhat irritable!
Any suggestions would be most appreciated. Thank you.
Warm regards, p.
Posted by gmb (Member # 23562) on :
Piper,
Most of us in the northeast with Lyme also have babs and bart regardless of how we test. Save the money. Its best to treat Babs and Bart by challenge testing a reaction, which sounds like your hitting something.
Mepron is pretty tough on most folks and you need a minimum 4 to 5 months, and most treat longer.
I also have been treated for about 18 months. I switched LLMDs after one year, and I just finished my 3rd month on Mempron/Zith.... I feel the pain 8^(
Hang in there
Posted by sixgoofykids (Member # 11141) on :
I took more than the Mepron/Biaxin .... usually a drug from the Ceftin family or amoxicillin along with the Mepron/macrolide in order to fight another form of Lyme.
If you felt better on bart treatement, I'd probably mention that to the LLMD. Bart and babs can be treated at the same time.
Posted by piper (Member # 25946) on :
gmb-
Thank you for your support.
I had tried Mepron for about 3 weeks last year; however, discontinued it at that time since the insurance compand denied a refil. Since then I have new insurance and they have covered Mepron for 3 months. So far they have not refused the refills. I now have enough to get through @ another month.
I would really dislike not using the Mepron because it is so expensive (luckily I only pay a co-pay of $25.00 for 201ml). I also like the taste believe it or not!!
Although I have had a difficult 2 months on Mepron I have not missed a dose (I have been thinking at $1700.00 per bottle it should be working!).
Thank you again for your support and encouragement!!!
Posted by TF (Member # 14183) on :
I agree with sixgoofykids suggestion that you ask to add another medication that fights lyme disease when you see the doc tomorrow.
If you fight lyme some more, you may get those pains to go away again.
Right now, I would say you are basically just treating babs. It's good to keep treating lyme if you are still having joint pain along with the babs treatment.
And, the foot pain is likely bartonella, so you will eventually have to start treating it again also, most likely.
Some docs are sophisticated enough to treat all 3 at once. They come up with protocols that have you treat M,W,F with one med and other meds on the off days. That's how they treat lyme, babs, and bart simultaneously.
Posted by BoxerMom (Member # 25251) on :
I feel better on more antibiotics. When I'm undertreating, I feel consistently miserable. When I'm on the right amount, I herx, but feel good between herxes. Even the herxes are preferable to the flares.
I need at least 3 antibiotics and 1 antifungal to make progress.
I'm currently on Plaquenil/Zith/Mepron/Malarone/Diflucan and doing great.
I am an ox when it comes to antibiotics.
Posted by piper (Member # 25946) on :
Thank all of your for your responses.
I forget to memntion that I am also on Nystatin.
I will ask about adding another antibiotic. Especially becasue it feels like the Lyme is back in full force; similar to when I went off everything for 3 months in April.
I live in NYC and cannot find a pharmacy that has Biaxon in stock. Duane Reade Pharmacy has Biaxon back ordered until at least October. I only have enough Biaxon for 15 more days; so will need to switch to something else anyway.
Thank you again for your support and encouragement, warm regards, p.
Posted by sixgoofykids (Member # 11141) on :
Zithromax can be taken instead of Biaxin with Mepron.