Been awhile since I've posted. Took Life on the Ice's advice and got tested for co-infections. Have Chronic Neurologic Lyme. Seen three LLMD's since April 2009. First one for a month, second for a year and a half and have just started seeing the third (Rica you know who I mean). My question is has anyone else been to him. He practices in CT and is very highly recommended with excellent credentials. Would like to know what his treatment procedure with you was and if you had good results. You can PM me with any info. Didn't care for the first LLMd. Didn't seem very sure of himself. Had some good results with second just seemed to be at a stand still with him so I sought out the third. He's doing a lot of testing and changing my antibiotics totally.
Hi Everybody: Just looking to vent a bit and get some valuable opinions on what to do next. My LLMD put me on Mepron for two months which did very little Didn't really see any change. Next he put me on 500 mg bactrum twice a day and 1000 mg biaxin twice a day WOW what improvements I saw-hot flashes almost totally gone, same with night sweats. Brain fog much much better, fatigue almost totally gone. marked improvement in balance. didn't fall for six weeks-was falling couple times a week. strength better. Then after six weeks I'm reverting back to where I was-maybe a little worse. Now my LLMD has me on 500mg Levaquin once a day which so far isn't doing anything. I suggested IV Rochepin but he can't because he doesn't want to jeopardize his license.
Hi Everyone, been awhile since I posted. Wonder if anyone has seen the info on Avastin. It's a new cancer drug that they are using on Multiple Sclerosis and Rheumatoid arthiritis patients. Sounds very promising. Though the side effects are severe. Blood clots, hypertension, joint pain and death. The article is in the November/December issue of AARP. Title of article is New Miracle Drugs. They're called Biologics. Check it out. Linda
Know this isnt the site to talk about lyme disease (I have ms too) but I find the lyme site difficult to use. This site is much easier. I'm being treated for babesia with mepron 750 mg-a teaspoon twice a day. I took one teaspoon for two weeks then went to two teaspoons after two weeks . My concern is that I've had no reaction to the antibiotic except a little worsing of existing pain and a couple of days of flu like symptoms. I did a lttle research and read that I should be on levaquin and azithromycin too. Anyone have any comments on this? I figured, from everything I've read, that I'd be herxing like crazy from the mepron. I see my llmd on September 9th, maybe he'll add it then? Linda
After 3 1/2 years on the protocol I had my first real heavy herx reaction last night. I've had feelings of nausea and slight flu before but nothing like this. Horrible headache in forehead and sinus area, stabbing pain in left breast down into my side, couldn't breath deeply it hurt so bad, panting, hot, cold, terrible nausea, very weak, couldn't roll over, could barely move my legs. Almost went to the hospital. Started a couple hours after I had taken 100mg of Doxy and 500 mg Azithromycin like I always take. Only difference was about two weeks ago I upped my doxy to 600 mg a day, for a couple days. Had to back down because the stomach pain and nausea were unbearable. So I stopped all medication for a few days and started again yesterday. Why would this cause this reaction now?
I'm asking myself that question. Anyone know???? Linda
Think I've found a doctor in NH, and he takes Medicare and insurance. He's a Physical Medicine and Rehabilitation Doctor. Whatever that means. Said he wants to do more testing especially Yeast. Really sounds knowledgeable. But what do I know?? Said he would sit down and talk to me. Have an appointment Apr 6. It's a start. What a roller coaster this has been trying to find a doctor. Said he's not sure I have lymes because I didn't have any herxheimer reactions to the antibiotics. I asked him if it was because the antibiotics I'm on aren't the ones they used for lyme and they are too low to cause a reaction. He said possibly.
Thought I would just rant for a few minutes. My mind hasn't stopped since I got the diagnose Wednesday that I have lyme disease. All these years could it have been Lyme Disease, a treatable illness, and not MS. Am I in a wheelchair because none of my doctors looked far enough to see if something else could be causing my symptoms? I look back on when I did the bee sting therapy and I did start to improve for severals months. Bee venom has melittin which is a known substance that fights lyme infections. It obviously wasn't in large enough doses to kill the infection and the infection just got stronger. Maybe the same situation with the antibiotic protocol I'm on.
tested positive for babesiosis and borreliosis-now what do I do?? Seek a lyme disease specialist? do I have ms or lyme disease or both? Is that why I got better for a short time, when I did the bee sting therapy (bee stings have a peptide in them that affects those two infections), or when I had a kidney infection and had IV gentamycin or half way into the protocol when I was getting remarkably better for a few months (were the antibiotics fighting the infections but were not strong enough to over come them). Now I'm really wondering what is going on-fighting MS or fighting Lyme disease. Now I look back on when my symptoms began was right around the time I had horrible pain in my knees-some days could barely walk!!! This is just so mind boggling. Linda
I received my test results for cpn. Can anyone explain the results to me? IgG 1.67 IgM 3.43 Linda