doglover's blog

Hi!! Been awhile since I posted

Been awhile since I've posted. Took Life on the Ice's advice and got tested for co-infectionsi. 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 antibioticsi totally.

Six weeks of short lived major improvement!!! Now discouraged

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.

Anyone seen the new drug Avastin????????

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 Sclerosisi and Rheumatoid arthiritis patients. Sounds very promising. Though the side effects are severe. Blood clots, hypertension">i, 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

Wondering about my lyme protocol??????????????????

Know this isnt the site to talk about lyme disease (I have msi 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

Herx reaction--Why Now?

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 Doxyi 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?

How do they determine you have neurological Lyme????

I'm asking myself that question. Anyone know???? Linda

Found a Lyme Doctor.......Sort of..................

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 antibioticsi. 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.

Fighting a Forest Fire with a Squirt Gun

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 MSi. 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 infectionsi. 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 Borreliosis and babesiosis--Now What?????????

tested positive for babesiosis and borreliosis-now what do I do?? Seek a lyme disease specialist? do I have msi 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 infectionsi), 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 antibioticsi 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

cpn test results................

I received my test results for cpni. Can anyone explain the results to me? IgGi 1.67 IgM 3.43 Linda

Gonna Keep Going...................

After much reading, many suggestions by many people and lots of soul searching and perhaps most important of all, talking to Rica, I've decided to keep going for at least another year on my current protocol. I am going to add doxyi and large doses of vitamin D3 (currently on Vitamin D2) to see how that will help me. I'll keep you posted on how things are going. Going to try to give up my large sugar in take also (I am a huge junk food junkie-I mean huge), cause that, I think is probably not helping me either. Thank you all for your suggestions and support. I don't think I would have gotten this far without all of you. Linda

Time to stop Protocol???

Think it's time to stop the antibiotic protocol. It will be three years 2/4/2009. I seem to be at a stand still. Not much improvement but the progression of the symptoms has slowed and maybe even stopped. I had gained alot back in the summer of 2007 but it didn't stay very long-only a few months. Was hoping my visit to Dr. Sriram in August of last year would jump start things again but that isn't happening. So I will slowly wean myself off the antibioticsi and hopefully my MS won't come back with a vengence. I will check in to see how everyone else is doing and gather all the information that is always cropping up on the site. Any comments and suggestions are welcome. Not quite sure where to go from here. Linda

Dr Sriram changed my protocol

I was noticing on my protocol from Dr. Sriram, 300mg Rifampin, 500 mg Azithromiacin-M,W,F and 500mg tinii 3xday for a week once a month, that I felt alot better and had far less spasticity in my legs the two weeks after the pulse of tini.> So Dr. Sriram has changed my pulse schedule to twice a month instead of once.> Lets hope this helps.> I'll keep you posted to see if it helps.> In general I'm not seeing tremendous results-just little ones.> I went to my neurologist yesterday and she said that I haven't change since my last visit three months ago. Which is good because I've gotten a little worse each visit up til now.>

Well finally got to meet Dr Sriram.....................

Had my first visit last Thursday August 14, 2008 with Dr. Sriram and it was awesome!! I definetly had reservations (one being having to fly-not my favorte thing to do) as to whether or not this was a good move, but after meeting and talking to him I am so glad that I went. He's really a nice man, very intelligent, very personable with a sense of humour. Turns out his in-laws only live about 40 miles from me. Such a small world. He normally treats patients who are still ambulatory. He has the best results with individuals who do not have as much damage as someone in a wheelchair. He agreed to try me on his protocol for six months to see how I do. If I don't respond favorably after six months he suggested that I go back to conventional methods of treatment.

Thinking of changing protocols................

I've been on the Wheldon protocol since 2-4-2006 and am thinking of switching to the Sriram protocol to see if it jumps starts anything (have an appointment with Dr. Sriram in August, they gave me an appointment for June but I have too much going on the next couple of months to get there that soon). Should I switch or wait to see Dr. Sriram? Just got my liver test results today and they are all well within limits so that's good news Linda
Syndicate content