Okay, I have an apt. with my LLMD soon and I am trying to get an idea about where to go with my treatment.
My symptoms that have improved are many...constant pressure in my head-gone, fatigue much better, pain much better.
Symptoms worse though--weakness on one side, trouble breathing, myoclonic jerking which wasn't there prior to tx, anxiety which never had before, yellow eyes (no liver problems) and yellow urine, night sweats.
I am currently on Minocyline and Plaquenil, and while my brain functioning is much improved and my pain is much less, I am concerned with these new symptoms.
I have not tested pos to anyting but Lyme, but I think something else might be going on.
So, any suggestions would be welcomed, I learn a ton from you guys and hope one day I can help others. Thanks.
Posted by liz28 (Member # 4946) on :
Minocycline can cause severe neurological side effects like anxiety and obsessive compulsive disorder, along with one of the most tortuous herxes of all the antibiotics.
Plaquenil is a malaria prophylaxis that is usually prescribed on a weekly basis, not a daily one. It has been linked to vision loss, both temporary and permanent. It was originally added to the Lyme antibiotic protocol as a companion drug to the macrolides, supposedly facilitating their ability to enter the cells. If you can tolerate ketek, it circumvents the need for this kind of support. But ketek is also hard on the liver, and so is not for everyone.
There's plenty of other antibiotics you can take that may help you. The usual Dr. B protocol is to combine a macrolide (ketek, biaxin, zithromax), a cephalosporin (rocephin, omnicef, ceftin) and a cyst buster (flagyl, tinidazole). You can also check out bicillin and doxycycline.
Posted by minoucat (Member # 5175) on :
Definitely go after teh coinfections (and it may be more than bart and babs -- could be viruses, mycoplasm,brucelosis), and try other abx combos as Liz suggest before going the IV route. Also consider any detox issues -- liver overload can be a huge problem with a lot of weird manifestations, ditto with neurotoxins. And don't overlook parasites.
My LLMD was convinced the hubby would have to go the IV route, but after treating for a babs relapse (with mepron/ketek, then primaquine), continuing to treat for Bb (Doryx, following Bicillin), and treating for viruses (Valtrex) the hubby is improved in all ways and IV no longer looks necessary. He also takes herbs and supplements and detoxes, and his liver and kidneys are now fine and his brain works better.
Best of luck.
Posted by Sammi (Member # 110) on :
Hi Gambler. My suggestion would be to treat the Babesiosis first. Mepron with Zithromax (or Biaxin or Ketek) is a good combination for many people.
When I had Babs, my eyes had a yellow cast also. Night sweats and shortness of breath can also be symptoms of Babs.
Good luck at your upcoming appointment.
Posted by Lisianthus (Member # 6631) on :
I agree with Sammie. My sister and nephew didn't really improve with those symptoms until they treated for babs.
I would suggest milk thisle for the yellow eyes, it helped them both with that.
Lisi
Posted by gambler (Member # 8441) on :
Just in case those of you who posted responses read this:
Thank you so much for your input.
I have decided on asking about adding babesia treatment, and now am going to try and decide between zith and ketek.
thanks again.
Posted by Foggy (Member # 1584) on :
Treating the Babs 1st if advisable by a LLMD is a must! My 1st LLMD wouldn't treat me for babs so I had to switch.
Was ready to do IV then went for Babs treatment even with a - test. Made a BIG difference.