According to CDC criteria, my test results (western blot) are negative. According to the lab in Palo Alto, I am positive for lyme.
My LLMD started me on amoxicillin and flagyl just about Christmas. I've not experienced anything good or bad. No herx, no improvement.
I'm beginning to think that I don't have lyme. I was dx with MS 16 years ago. If you were me, would you give up on abx?
Thanks, Becky
Posted by zipzip (Member # 6226) on :
tests often vary from lab to lab, this is illustrative of the problem of unequivocaly diagnosing Lyme disease.
is your MS relapsing or progressive?
1 month is not a very long time for antibiotics for a tertiary case of Lyme disease.
a herx might not happen if the prescribed antibiotics are not in high enough dosages to have sufficient bacterial killing power.
given your MS diagnosis it would be better to treat with the antibiotic minocycline and with the drug plaquenil (hydroxychloroquine).
there are many studies that have found the latter two drugs, though not neccesarily together, have been helpful to MS patients in some small trials.
more research needs to be done on the latter.
you should speak to your doctor about possibly changing to this protocol and then reacess after a mimimum of 3 months.
you need a baseline eye exam for plaquenil.
google hydroxychloroquine and multiple sclerosis, and minocycline and multiple sclerosis and you will see some information on this.
best of luck.
Posted by cigi (Member # 6600) on :
I'm not as lyme literate, but I think there's a fine line between MS and lyme. Give it time. I know there are alot of people on this site that probably have similar symptoms as you. Wait for their reply and maybe you can judge a little more yourself with your doctors help. This site has helped me so much.
Good luck - Cigi
Posted by Areneli (Member # 6740) on :
How much of Amoxicillin do you take? I haven't herxed until the dose was more than 4.5 g/day.
[This message has been edited by Areneli (edited 24 January 2005).]
Posted by HaplyCarlessdave (Member # 413) on :
The herx reaction varied somewhat, for me. I had the sharpest herx reactions the first few months of treatment. They would occur about 3 weeks into a treatment, and recur, with lesser intensity after a little over 1 month. With clarithromycin and amoxicillin, the timing was slightly different, and the reaction much less pronounced, even though this was the most effective combination for me. I just got better and better, with maybe a slight herx every so often. By this time I had also discovered gingko and "nutrijoint'.., not to mention the sauna., all of which toned down or modified the herx reactions. (sometimes sauna would intensify a herx, but usually not.) So by all means, don't feel bad if you don't have a "herx"! Hope you get better and better, too.
DaveS
Posted by HaplyCarlessdave (Member # 413) on :
Oh- now wait a minute; did you say you only started around christmas of this year? Then you're just starting out, and may have yet to even reach your first "herx". As for the MS/lyme question, I think 'ms' is very often just mis-diagnosed lyme. False positives for Lyme tests are less likely than false negatives, and only possible on certain types of tests. DaveS
Posted by treepatrol (Member # 4117) on :
Sometimes it takes time for a herx but if your germ load is low you may not herx right away. Depending ion how long you had it and the strain your immune system etc.
CDC Criteria is for surveilance purposes only Lyme is a clinical diagnoses.
[This message has been edited by treepatrol (edited 25 January 2005).]
Posted by liz28 on :
For me, amox was useless against Lyme. Right now, I'm on a combination of omnicef and ketek, and zip's mention of minocycline is a great idea.
Also, I was shocked (SHOCKED!) to discover that while I've had a real, true blue case of raging Lyme over the last four years, I also had tough cases of babs and bart. The bart, especially, can be easily mistaken for Lyme, and it's just as dangerous.
Posted by lou (Member # 81) on :
Have you read anything about Lyme? I recommend the books by denise lang and karen forschner. See list on this website (green menu box left side of this page). Also, google Lyme Times, and get their special patient issue from summer, 2004 which covers lab tests, etc.
In my opinion, if you tested positive for lyme, you have it. But as someone else mentioned, it is also possible that there are co-infections. Many of us got more than one germ from the tick. These may need a different kind of treatment.
People who have got to the late stage are in for a long haul and need to educate themselves.
Posted by Monica (Member # 224) on :
If it is possible that you were infected with Lyme 16 years ago (and I don't see why it wouldn't be) you are in for the long haul. I was infected for 9 years before receiving any kind of treatment, and I have been battling in one way or another since 1997.
It is highly, highly unlikely in my opinion that a month on antibiotics is going to "cure" you. Don't give up. There may be other antibiotics that would be more effective.
Posted by aka400x (Member # 5841) on :
Thanks for all the replies. I appreciate it. I wasn't looking to be cured after one month on abx. Just looking for confirmation.
Posted by daniella (Member # 6753) on :
My llmd told me that the longer you have had lyme..... the longer it will be before the herx. He said the bigger the spirochete load the longer it takes to respond to abx.
He also said sometimes it could be months before a herx.
I have had slight herx's................ But 9 weeks ago I herxed like you wouldn't believe!
I called the dr. and he said "GREAT" 'because you have never really herxed before'.
I have been in treatment for 4 years, and this is first full blown major herx...