posted
I started on Biaxin and Plaquenil on March 28th. I have been down hill ever since. All my symptoms have increased, Myoclonus, headaches, back pain, neck pain, fatigue, and my eyes are extremely sensitive to light again. I thought this was suppose to help me? How long will it take before I start feeling better? They want me to stay on this for at least 3 months. I don't want to spend my summer in my pajamas again.
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I felt worse the entire time I was on Biaxin. For me, it was mostly pain in my hips, quads and feet. I think I had some light sensitivity as well, mostly noticed by my inability to focus on lights at night.
Posts: 4711 | From Washington, DC | Registered: Mar 2004
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lla2
Frequent Contributor (1K+ posts)
Member # 2364
posted
anytime that you are on abx for lyme for a good amount of time like you have been with no help you should start to consider the possbility of coinfections...sometimes treating for lyme can bring them out and they will stand in the way of you getting better.
has your llmd tested or treated for any coinfections yet? eyes can signal bartonella....
just another suggestion
LIsa
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
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posted
lla2, Lyme Dr. tested me in the beginning for coinfections and the only thing that came back was mycoplasma fermentans, however I just recently got a positive Lyme test result on a western blot that took 7 months to show up. I'm wondering now if other co infection may show? Thank You Imove2
Posts: 18 | From Brooklyn, Ct | Registered: Apr 2005
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posted
plaquenil can be a VERY tough drug, without or without an antibiotic, with or without Lyme.
i've had my fair share of biaxin without a problem but with plaquenil it caused big problems.
you can ride it out if you think it is a herx or try something else for your Lyme.
make sure you are having you complete blood chemistry (CBC panel) and metabolic panel checked with symptoms like that. you don't want to inflame your liver.
lla2
Frequent Contributor (1K+ posts)
Member # 2364
posted
never wait for a positive coinfection test...it may never come! always treat based on symtoms..do you have any coinfection symptoms?
night sweats headaches dizziness/vertigo/off balance eye problems seizures
maybe it would help if you said what your current symtoms are that arn't going away???
Lisa
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Yes good point to discuss with a LLMD.
I waited months on Biaxin & Plaq and had no progress. I had a neg Babs test yet all the signs of Babs. I started Babs treatment with Mepron and it made a BIG difference.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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posted
IIa2, Symptoms included no appetite, fatigue, headaches,sensitivity to light, myoclonus, back pain, neck pain,ear aches and sore throat. These symptoms are not going away. Medicines I've already tried: Doxy- 6weeks Biaxin and Ceftin-2 months Ketek,tetracycline, and IVIG therapy -4 months for movement disorder Doryx and Rocephin-90days then Mepron added on for 42 days minocycline-6 days ,however I could not handle this due to severe vertigo and confusion. Now Biaxin and Plaquenil-going on 1 month. I have herxed on all meds except for Rocephin until mepron was added then let the shaking begin. I'm so tired of all these cocktails that I'm so tempted to stop all meds and wait to see what happens. I'm at the end of my rope. They give me these medication then I have to take 3 to 4 more meds just to control the symptoms. I want my guest to just go to bed so I can get some rest and go back to work. I'm sorry for acting so weak. I just cant understand that I could be this sick. This only started on June 29,2004 and I started Doxy right away due to a positive Elisa and symptoms that consisted with Lyme disease. Until the holy bible of all test came back. The Western blot came back neg. Then the PCP started talking about Colitis, virus, summer flu, and a parasite. He said I did not have Lyme disease because you cannot relapse on Doxy. I ran for my life to a Lyme specialist. The only reason I ran was because my mother had Lyme disease 2 years ago and the same thing happened to her. Doxy for 4 weeks and then she stopped due to Dr orders. She had a huge relapse and three days later in the hospital. Treated with Rocephin for 6 weeks from an infectious disease Dr. in the hospital. However now she has neuropathy so I think she is still not completely cured. So at this point I don't know what to due.
lla2
Frequent Contributor (1K+ posts)
Member # 2364
posted
all ofyour symptoms sound like babesia symtoms to me...especially the ones like neck pain, myoclonus, sensitivity to light, back pain, headaches, no appetite etc..etc...
I think you should talk to your llmd about the possibility you have a coinfection ,especially with all the meds you've already been on with not much imporvemnt..that's a sure sign a coinfection is gettng in the way of your getting better....
I see you were on mepron , however you were not on a macrolide at the same time..which you need to be in order for the mepron to be effective ...also you need to make sure you always take the mepron with something fatty for proper absorption..if you had mepron with doryx etc..it wouldn't have been effective..a macrolide would be zithro or biaxin...some may be trying the new ketek, but not sure if that works since it's a ketolide a cousin of a macrolide...
just my opinion of course..however many llmds feeel you can't get rid of lyme until you treat the coinfections first.
LIsa
[This message has been edited by lla2 (edited 22 April 2005).]
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
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posted
Thank you , I will call the LLMD and ask if he can presribe mepron with zithromax. Maybe this is the key to my problems. Thanks Again Imove2
Posts: 18 | From Brooklyn, Ct | Registered: Apr 2005
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