i read that if the spirochetes cross the blood/brain barrier which i assume would happen with chronic lyme disease then "oral antibiotics are not curative?" i read this on ****pedia and i am hoping they just have the information wrong. maybe that just means IV anti-biotics are the only way to go at that stage?
I hope this is not true because I am chronic and just started my oral antibiotics a little over a week ago, which my dr. says I may be taking for up to a year. You read so many things, it's so hard to truly know what is true and what to believe. I have heard something similar to what you are saying but it doesn't seem like many doctors put their patients on IV antibiotics? I would think at least in the beginning of the treatment, this would be a good idea to get a good dose of antibiotics in the blood stream. I guess in time I will know the answer. I heard, too, that some cases are totally uncureable because it's went too long and too far into the process. I'm hoping this is not true also.
Hi Agentbad and Lymesgal,
When I finnally got to my LLMD(Dr.D) I had an IV in my arm for 4 weeks(Long story,but Mass General thought I had a central nervouse infection of some sort and thought I had nothing to lose by trying it.)I felt no better,or worse.When I got to Dr.D (I'm going to now refer to him as Dr. D in case there's a witch hunt out for him for treating lyme,they're watching you know!!) Dr. D took one look at the picc line in my arm and ordered it removed!!! He explained that the Dr.'s there were well meaning,but rocepherin is the wrong medicine to kill lyme.The Lyme has a cell wall around it that needs to be busted open(hence,the plaquenil)and the Biaxin kills it.The plaquenil lowers the pH in the body to disarm the cell wall.The Lyme likes an acidic environment,and that's why we are not allowed vitamin c.I was feeding it thousands of milligrams!He told me the only compound Lyme can't make on it's own is B complex,which I was also taking.I will do whatever this man says as he's the only expert I've got!!! who knows?Maybe the IV killed some other co-infection before I started treating the lyme.I hate to think I went through all that for nothing!!!
Glad you have found Dr D and you have faith in him. It's amazing to me that there is so many contradictions out there as far as treatment. What Dr D is saying makes sense to me about the vit c but I know alot of LLMD recommend high doses. What is a patient to do?? I know that this is a tricky disease and there is not alot of research dollars going into lyme, so info is not consistent.
I thought IV was the most effective way to go with advanced lyme. I have an advanced case and was on IV last August when I got a bad infection (came on suddenly, they called it Sepsis) and had the PICC pulled. As scary as that was, I am considering doing the IV again as the orals are not doing it. My LLMD wants to try every avenue before going back to that but I read things and wonder if IV is worth the risk.
My LLMD says some orals do cross the blood brain barrier such as minocycline (I am on now), Ketek and some others I can't think of now. Supposedly tindamax gets the cyst form and I am on a 2 week on, 2 week off cycle of this.
So hard to know what is fact and what is fiction.......
I know what you mean, it all confuses me too, and you wonder what and who to really believe. Our Dr. D is so different on the concept of the vitamins. I am choosing to not give the lymes any more vitamins than they already get thru my normal food intake. It makes better sense to me, although who knows--I could be so wrong! I guess we all have to chose our own battles with this disease. If this route doesn't work for me, eventually there will come a time when I would probably try it the other way and kick up the vitamins. It's mind boggling. Have you tried Biaxin/phenquenil combo?