If you have truly experienced a meaningful improvement followed by really long relapse free period, or perhaps got cured permanently, tell us about it.
Please try to resist `jokes' in this thread.
***
Now a question for you, what is it with the "please resist jokes"? Seems an odd thing to add...
PS
I simply want this thread to stay focused
Perhaps the doctors who believe that chronic Lyme cannot be cured are right and we all are just wasting resources for expensive antibiotics that do not work.
[This message has been edited by Areneli (edited 18 January 2005).]
[This message has been edited by ConnieMc (edited 18 January 2005).]
Melanie has a wonderful post on "Success Stories"..do a search under her name. Lots of people have gotten better with abx treatemnt!
For myself I think the two years on doxy and Mino really helped the lyme and now treatment for Babesia, Zithromax, Plaquenil and Malarone has gotten me to the point of feeling mentally well.
Good luck to you.
I guess all I can say is that Zithromax has always worked for me. And I have never had a side effect to the drug. The main drawback is the cost.
I usually take 1500 mg every 2 weeks.
I have been in remission twice over the past 5 years. The longest improvment has lasted is about a year.
Doxycline 200mgs a day was not enough. After 4 months I was getting worse and I was naseous much of the time. I improved dramatically within days of switching to tetra.
I'm seeing Dr. D. in Boston, you can read his paper on tetracycline (and other drugs)http://www.canlyme.com/donta.html. He suggests that tetracycline may work better that some other drugs simply because you can take a lot more of it. I think this is true in my case. I don't think I could have tolerated doubling or tripling my doxycycline dose.
Knock, knock... (oops, sorry)
h&s
[This message has been edited by HaplyCarlessdave (edited 18 January 2005).]
I'm about where you are: still researching doctors and treatments. In the process, I went through much medical research and compiled a list of antibiotics choices for Lyme Disease (I figured I might as well be informed when I finally meet my LLMD). I've emailed you the list.
As a rule of thumb, remember all antibiotics are either bacteriostatic (inhibit the growth of the bacteria) or bactericid (kill the bacteria). From what I've read, chronic/advanced stage Lyme doesn't respond to one class of antibiotic alone, but to a combination of antibiotics. Each and every patient will respond differently to a same combination, so knowing what worked for others is unlikely to help you. There are hundreds of antibiotics to chose from (hence the importance given to a doctor's experience and knowledge).
Besides antibiotic treatment, there is a serious need for:
1) Antibacterial therapy
2) Inflammtion and Immune System therapy
3) Protecting the nervous system from neurotoxins
4) Detoxyfying the body
(a good LLMD will be able to go over that with you and make recommendations on diet and supplementation)
PS: you can check http://www.nextmd.com
for more info on common drugs, side effects and interactions with other drugs.
Please also provide doses and length of treatment. It is very important. Some treatments with too low doses or that are too short, do not work.
With my limited experience I have used Augmentin 3x 1g with small success (small herx reaction) but really started herxing when one week later increased Amoxicillin to 4.5 g per day. I may even soon consider going higher to 6 g/day.
I have read many general writings on Lyme treatment. What I couldn't find were the specifics: exact combinations of antibiotics, exact doses, exact time of treatment and sequences. Anybody feel that so called pulse therapy had helped them?
As I have mentioned there was no LLMD in my province; but what is to my advantage I have a lot o medical education behind me and perhaps can figure out a few things without LLMD.
Currently I know a lot more about Lyme disease then the doctors who treat me.
Presently they just follow my hints but I am often lost and need help. The official medicine is not providing many tips for successful treatments. There were very few clinical trials on Lyme treatment in the past and not much is going on presently.
So it appears that the Internet thanks to your personal experiences is one of the best sources of knowledge.
Thanks for your sharing.
quote:
Originally posted by Areneli:
If somebody can report a successful combination of antibiotics that worked for them, please let us know as well.Please also provide doses and length of treatment. It is very important. Some treatments with too low doses or that are too short, do not work.
you have to remember that there are many variables to Lyme treatment.
*how long has the person been sick and how high is their bacterial load?
the higher the bacterial load the higher doses of abx that are needed as well as duration of treatment.
*what is the person's immune status?
immunoglobulin testing is very important and usually not done. IgG and IgG sublevels 1,2,3,4 and total IgA.
if a person is immunodeficient they will create idiopathic antibodies and not be able to eradicate the borrelia antigen with just antibiotics, immunomodulating drugs will be needed.
*borrelia strains and pharmacokinetics of antibiotic.
western blotting looks for the strain borrelia burgdoferi (and in europe afzelli and garinii). yet there are over 300 known strains of borrelia.
you will never, by contemporary testing ability, know which strain you probably have unless you are 100% unequivocal positive for borrellia burgdoferi.
different strains have different susceptibility to different antibiotics, and in turn each antibiotic has differnet pharmacokinetics which work on the borrelia antigen.
since borrelia can mutate and evade the humoral host often different antibiotics are necessary.
the borrelia antigen has three different known forms - spirochete, cell wall deficient (L-form) and cyst form. each form calls for the need of a different antibiotic.
the borrelia spirochete enzyme also contains beta-lactams so a beta-lactam (penicillin derived) antibiotic must be in high enough dosages to be effective.
i think the majority of people do well by combining beta-lactam bactericidal drugs with intracelluar bacteriostatic drugs of the macrolide class like zithromax.
anecdotal evidence shows many people have positive responses to sulfur based antibiotics (septra/bactrim) which have a very long half life.
*co-infections.
if found in the patient must be treated. erichliosis cannot be treated with beta-lactam drugs so a month of a cycline antibiotic must be used.
babesia is a protozoan so antimalarial drugs must be used in combination with an intracelluar drug to be successful.
bartonella is often treated as a result of treating Lyme but rifampin is the best treatment with a minimum of one month. the cycline antibiotics are effective on bartonella as well.
sorry, but nothing is clean cut. check out the following article by tom grier :
http://www.canlyme.com/tom.html
[This message has been edited by zipzip (edited 24 January 2005).]
My son is a patient of Dr. D/ Been seeing him since 10/04. Son was diagnosed in September after 5 months of getting the run around. Has been hard but Dr. D is making it easier. Just saw him last week. Have nothing but good things to say about him. I'm willing to "talk" to. We're from WMASS.
just saw your post. i'm in western ma too w/o LLMD although too sick to travel. can you contact me too? want to talk about doc et al.
thanks
~dm
([email protected])
Doxy didn't agree with me.
I am on probenicid and amoxy now and seeing some improvements but feel I need something with more kick.
Lymiecanuck
quote:
Originally posted by chainsaw joseph:
giftolife,is there anyway we can get in touch with you?Heres my adress [email protected] if you want,same for you duramater will answer anything I can.
Sorry, first post. I don't know if I am doing this right. I am also going to see Dr D. in Boston.
I'm also being given IV Gammaglobin (sp?) once a month to boost my immune system. That is probably helping as well.
------------------
-Mike
I would even call the neuro improvements significant.
I just added Amoxycillin (3 weeks ago.) Have not seen any effects yet.
There is a 4 year old thread on this topic, and still going strong btw, with 100's of responses to your question: http://flash.lymenet.org/ubb/Forum1/HTML/000323.html
Michael
Treatments do change with new research and experience so it is important to know what is out there and what works the best at present, not 4 years ago.
[This message has been edited by Areneli (edited 26 January 2005).]
I am seeing huge improvements in my LD symptoms with weekly bicillin injections and probenecid...
cathy