I WAS DIAG WITH NEURO LYME AND AM ON BIAXIN AND PLAQUENIL. I SEEM TO BE GETTING WORSE AFTER APPROX. ONE MONTH SINCE I ADDED THE PLAQ TO THE BIAXIN. MY NEXT STEP WAS TO ADD AVELOX, THEN MEPRON, BUT HAD REACTION TO COMBO WITH AVELOX (THOUGH TOOK IT ALONE OK) HAVE NOT ADDED MEPRON YET.
SEE DOC IN JANUARY. DO THESE DRUGS CROSS THE BLOOD BRAIN BARRIER AND IS IT NECESSARY TO MAKE PROGRESS TO TAKE THOSE TYPES OF DRUGS, THOUGHT HERXES ONLY LASTED A FEW DAYS, FEEL WORSE AND WORSE, CAN'T EXCERCISE, HAVE NO ENERGY LIKE I USED TO, CAN'T LEAVE SOFA ESSENTIALLY. SO I AM PRETTY CONFUSED AS TO WHAT IS GOING ON.
I DID WELL ON ZITHROMAX ALONE, THEN FOLLOWED UP WITH CEFTIN WHICH ALSO SEEMED TO HELP OVER SUMMER.... DOC WANTS TO FOLLOW THIS PATH LAST WE TALKED ..WILL BRING THIS UP TO HIM AT NEXT VISIT BUT IN THE MEANTIME I AM CONFINED TO HOUSE WHICH IS HORRIFYING. ANY HELP WOULD BE APPRECIATED. THANKS KRISTIN
Posted by i want help (Member # 9786) on :
no one knows or has any suggestions????? kristin Posted by gopats (Member # 5218) on :
I don't know how to answer your questions. But my herxes last as long as 6 weeks. Sometimes they are so severe, doc tells me to take a few days off and detox. I'm sure someone will come along soon that can answer your questions.
Posted by i want help (Member # 9786) on :
thanks kristin Posted by luvdogs (Member # 9507) on :
Hi Kristen,
I have posted similarly to this post in the past. Do a search in medical questions for "best brain abx, brain sx symptoms abx antibiotics, highway driving abx" etc.. all different combinations of those words. You will get many people who responded to me and many others regarding this topic.
I am not sure what to say about the biaxin and plaquenil, but I do know that whe I went on that combo when I was first sick it made me soooooo mental! My PMS consisted of me screaming and crying and feeling like I was losing my mind - and even without the pms I was generally crazy on that combo. But, in retrospect, I think it helped me tremendously.
I have recently been on zithromax IV (similar) plus biaxin and that too has helped me reagin a lot of mental functioning. I have been driving on the highway for the first time in years!
I believe the plaquenil starts busting cysts at about 6 weeks and that could make for a more constant herx, as opposed to the biaxin which might be the "few day a month" type by itself. Biaxin also is much more potent with the plaquenil bc of the higher intracellular penetration and so that can make herxes worse.
Many abx are do not seem to give the few day a month type of herx - I would really talk to your doctor about these things to put your mind at ease, and to make sure you are not having a bad reaction to the meds.
But I do know that my experience was fairly constant hexing and lessened with time on that combo. And in the long run helped me tremendously.
Good luck and keep faith. And do a search for people's input on abx combos. But I am sure your LLMD (I presume) has an idea of the course he/she is taking even if it doesn't match what everybody says helped them.
Sara
Posted by i want help (Member # 9786) on :
thanks! that makes sense... this is about time on plaq..just finishing first bottle so must be about 4 weeks though skipped some doses for a while so maybe more.. good to hear that herxes can last longer because this is mind boggling and my family is wondering why im worse than better so they doubt the treatment plan been out of work long enough though it took me long time to get diagnosis... so just started treatement in october.. kristin
Posted by caat (Member # 2321) on :
Biaxin does NOT cross the bbb Tetrocycline does NOT cross the bbb Omnicef does NOT cross the bbb suficiently bicillian does NOT cross the bbb
Zithromax is not found in brain/spinal fluid BUT IT IS found in brain tissue- it DOES get through to the brain
Plaquenil DOES cross the bbb HOWEVER isn't usually used alone. It is rumored to help biaxin cross the bbb but I'm not sure there is sufficient research to say for sure.
Ceftin DOES cross the bbb (I liked ceftin a lot- I had neuro-lyme)
Doxycycline Does cross the bbb in HIGH DOSES- for example 400mg. BUT it does NOT cross in suficient amounts in lower doses like 200mg
Rocephin DOES cross the bbb- very very well.
Flagyl Does cross the bbb (sometimes added to rocephin!! It's used for the cyst (egg) phase in the life cycle of lyme)
Tinidazole DOES cross the bbb (sometimes added to rocephin!! It's used for the cyst (egg) phase in the life cycle of lyme)
Other people see this differently but I personally beleive it is very very important for drugs to cross the bbb in nuerolyme.
Posted by Travlr1 (Member # 9681) on :
caat,
I do agree that it is very important in neurolyme that the abx. cross the bbb. Otherwise how does the abx. kill the bugs living aross the wall throwing the party . Although a llmd I really trust says there is some controversy concerning this.
One difference was Ceftin did nothing for me, yet Rocephin did.
Travlr1
Posted by ChrisBtheLymie (Member # 8916) on :
Many people say that Azithromycin/Zithromax does NOT get into the Brian - I have found quite a few articles that say it does. It can be used to treat Ocular Toxoplasmosis.
http://bjo.bmj.com/cgi/reprint/82/11/1306.pdf "We consider Azithromycin for the treatment of Ocular toxoplasmosis because of its availability and limited toxicity and because it crosses the blood-brain barrier and appears to be widely distributed to the brain tissue."
Minocycline, Doxycycline, Flagyl, Tinidazole, Ceftin, Cipro, Roxi and probably quite a few others can cross the BBB. And of course quite a few I.V ABX.
Posted by Cobweb (Member # 10053) on :
Hey- all the antibiotics I'm on cross the brain barrier-that's why I've progressed from Deadhead to Sh!thead to Webhead. Not sure what comes next...
Carol B
Posted by Lioness (Member # 10655) on :
I herxed pretty bad on the Plaquenil. I was taking Biaxin too.
It lasted a few months straight. Then it tapered off slowly and I would have good days.
Posted by caat (Member # 2321) on :
Travlr1,
I used ceftin right after rocephin; did 1 month of rocephin/flagyl followed by 4 or 5 weeks of ceftin/tini. Maybe that made a difference. Rocephin is certainly stronger and more effective.
I really do think that combo got rid of the lyme itself. Now I'm working on co-infections.
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