I went to the ID dr. last week and after begging him for ABX he gave me 875 mg. twice daily of Amoxicillin as I am allergic to drugs in the Tetracycline family.
I have not yet started the ABX.
I am reading a book (The Top 10 Lyme Disease Treatments)that says that cell wall inhibitors (which Amoxicillin is) are the worst choices for treatment.
The book states that these type of ABX make LD worse and should be avoided.
It says these ABX seem to provide temporary improvement but symptoms will return and worsen.
It says many cases of debilitating chronic LD could be avoided or less severe by avoiding cell wall inhibitors.
So now I am not interested in taking the Amoxicillin until I see a new dr. and that appt is Oct 28.
Can anyone shed some light on this. I am confused.
Posted by Lymetoo (Member # 743) on :
I hope you are searching for an LLMD to help you!!! That is a low dose of amoxy. I found no improvement with amoxy myself.
About the book.. just keep in mind that Bryan is not an MD... but I do think his take on it could be true.
One thing for sure, you must take cyst busters to get well.
Posted by TF (Member # 14183) on :
I got rid of lyme by taking 1,500 mg of amoxi 3 times per day with probenicid. (Total of 4,500 mg per day or 4.5 grams of amoxi.)
At the end, the lyme doc added in flagyl with the amoxi. to kill the cyst form of lyme.
It worked for me. It has now been over 5 years since I completed my lyme treatment and I am still symptom-free, enjoying my life. (I had had undiagnosed lyme disease for 10 years prior to beginning my treatment.)
Why not read the lyme treatment guidelines written by the lyme disease guru of the U.S. and the world--Dr. Joseph Burrascano.
People came from all over the world to be treated by Burrascano. He wrote this document to teach other doctors how to treat lyme. Doctors all over the world follow his teachings. His guidelines are the only ones on the ILADS website. I think that says a lot.
You can search the document on-line looking for the word "amoxicillin" and you will see that Burrascano includes it as one of the meds to be used to treat lyme disease.
There are many meds that can be used to cure lyme. Doctors have to work around a patient's allergies, bad side effects, etc.
I'd take the amoxi until I could get in with another doctor who will hopefully give you higher doses and combine it with other medications.
Information is only as good as the source. I would spend my time reading the highest quality lyme disease documents.
Posted by Lymeorsomething (Member # 16359) on :
Amoxy works better at higher doses, 3 grams and up combined with probenecid to keep levels high.
Posted by lymeladyinNY (Member # 10235) on :
TF and I was/are treated by the same LLMD. I, too, am on high dose amoxicillin, plus minocycline. I'm also doing grapefruit seed extract.
It seems to be working for me. I am much better than I was. In fact, I'm scaling back on treatment for Lyme itself and the symptoms aren't returning much.
It's babs/bart, especially bart, that are killer for me.
Posted by average joe (Member # 26091) on :
lymelady, I was under the impression that bart is comparitively easily treated. Judging by your post that apparently is not the case. I am curious what to expect.
Posted by lymeladyinNY (Member # 10235) on :
Hi Joe, bart has been awful for me. It causes full-body muscle spasms, altered consciousness with "electric" headaches, speech problems, and vagus nerve irritation with heart palpitations, stomach upset, and twitching toes.
I take levaquin for it, but I have to do this every other week because I have to stay on top of babs or the terrible symptoms of babs come back on to me (inability to move or speak is the worst symptom of babs that I get - very scary!).
I often feel that I have no symptoms of babs or Lyme, but I ALWAYS have symptoms of bart. As I sit here typing, I feel like there is a metal rod sitting in my chest that extends into my stomach. This is the vagus nerve irritation. At least I am coherent for this time of night. Often enough, I am in bed babbling and screaming by this time.
I definitely have symptoms that I have not seen others write about. Sometimes I wonder, "Does anyone have these diseases as weirdly and badly as I do?" I'm probably not a good example of what to expect.
I don't think I'm alone, though, in thinking that bart is extremely difficult to get rid of.
- Lymelady
Posted by one4islands (Member # 28187) on :
Thanks everyone for your help.
Posted by sapphire101 (Member # 6638) on :
LymeladyinNY, I'm having a lot of the same symptoms you are. I just started seeing a LLMD in DC and they say they are a type of seizure.
I was put on meds for seizures and they are much better but not gone.
I've been seeing him since May and they had to get these under control before I could be treated for lyme. I just got my port Friday and had my first dose of abx on Monday.
If you've seen the film UOS I'm much like Mandy only in some ways worse. It's like I'm paralyzed sometimes when I have these episodes but not always.
Just wanted you to know you aren't alone. It's very scary when this happens but I know it too will pass.
I'm very hopeful this dr can help me since my other LLMD didn't get me well or even to a good point really in 5 yrs. Feel like I wasted so much time there as I've been sick 20 yrs now.
Wishing you better health.
Sapphire
Posted by 'Kete-tracker (Member # 17189) on :
I echo TF's sentiments. I found that taking amoxicillun w/ Probenecid is what finally got Me 'over the hump' & better again. I Will say that you'll need to be on a lot more than 875mg/ twice a day! My LLMD had me Start at 2 grams (2,000mg) a day, but I eventually built up to 4 grams/ day, which I stayed on for MONTHS, though it was only (Ha!..."only") 13 weeks before I was Much improved & out on my kayak every Other day (for that 1-hour workout... S-O important to getting over Lyme). Remember that LLMDs often add in flucanazole or Flagl to help attack the Lyme from another angle.
Sounds to Me like you Really need to see a more Lyme-literate doc, there, one4! An ID doc is typically the WORST choice for you to see if you suffer from late-stage, disseminated Lyme (like most of us here).
It may seem illogical to Claim that but ID docs almost always follow the IDSA suggests in treating Lyme disease, which, at the very LEAST, fall short of effective treatment for those patbieyntbs who have had the bacteria in thier tissues for more than a month or 2.
If you have a confirmed appt with a doc that specializes in Lyme (& will get you on an ILADS-recommended level of abx), then may I suggest you start Out with that 875 mg b.i.d.
But BE PREPARED for the initial Jarsch-Herxheimer reaction(s) you will have to endure a day or 2 in. (Esp. if you haven't been ON abx for Lyme tbefore.) No reason to stop the "amoxy", though. On the Contrary. It CONFIRMS you HAVE a Lyme problem & the abx is starting to kick some butt. Good luck!
Posted by 'Kete-tracker (Member # 17189) on :
Of course, I meant to write "patients". [My keyntboar i al messe u latbelyn. :-(~ ]