Most of our 7 family members have lyme/babesisis/bartonella...some congenitally. We have been battling this with a LLMD since 2005. Most of us went undiagnosed for years. My kids improve greatly on a 3 drug regimine....I can only improve 70%. Should I just keep them on what works? When they go off, they relapse. Isn't this disease for life, especially with many co-infections. Is there really a "cure"? Or, is it important to keep rotating drugs? Anyone know a liver supplement that we should all take? I am familiar with milk thistle, but should we be adding something else? Thanks.
Posted by david1097 (Member # 3662) on :
What you my find is that after a while the combination will no longer work and you have to rotate to a new set.
Life long treatment is recognized by some Dr's. in SOME cases. In those cases If you stop you relapse. I think after a while on the drugs the duration before relapse can be pretty long so there are some times when you can stop for a while.
Other things like major change in diet, active weight loss, change in exercise level and other things that affect body and blood chemistry can also keep the bug in remission (and sometimes reactivate it too).
Some also say the certain herbs can take the place the abx , but I have not seen any evidence that shows this to be true with the people that I know.
As a final note, when you say 70% better do you still see the cyclical flareups? If not, that is a good sign. If the cycles repeat on the regular basis then the disease is still active. If the cycles are gone then you are likely dealing with the after affects, which can still be pretty rough also but is due to a chronic acquired inflamatory condition triggered by the original lyme infection (something like a type 3 inflamatory reponse).
On the liver thing, ,my personal thinking is the less you can take that affects the liver, the better off you will be. Milk thistle in my mind is just some more junk that the liver has to deal with. Other will disagree. As far as I know, milk thistle is NOT recognized as useful in cases where people are exposed to chemicals that are toxic to the liver nor is it used for cases where there is significant liver stress. Why it would then be useful with lyme is beyond my comprehension at this point in time.
Posted by Keebler (Member # 12673) on :
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Topic: If I find a drug combo that works, do I just stick with it for life?
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No, you will have to make adjustments, combine and rotate. Hopefully, as infections come under control you will be able to stop meds if you keep an open eye and excellent health habits.
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
A general note (to consider all other readers, too) - It is vital for lyme patients to avoid alcohol and smoking when committing to any protocol. As do MDs, doctors of Chinese medicine suggest a very healthy life style as part of any healing protocol.
Still, if patients find this hard, be sure to talk to your health professional for what can help you succeed.
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Posted by lymewreck36 (Member # 4395) on :
Thank you Keebler for those links. I will investigate all of them when the family is settled down.
To answering the original post....
I have chronic lyme, my husband, and my three kids.
For all of us, even my youngest daugher who began her treatment at 4 years old and is about to be 10, we have not been able to go off medication for extended periods.
My husband tried two years ago to go off, and was off for five months, during which time he wouldn't listen to me telling him he was slipping.
When he finally realized he was slipping, he started back on medication and herxed his butt off. Now almost two years later, he is trying to get back to the level of wellness he had when he went off medication for five months.
My youngest daughter reported feeling great to our doctor, and the doctor took her off for 4 months. I kept protesting that she was still sick, but of course I am being an "alarmist."
When we got her back on medication, after a couple months of her limping and the doctor saying.....well....she DID do a lot of running, she herxed so badly she cried every night.
With the herxes came the central nervous system stuff..anxiety and crying. She asked me if she would suffer the rest of her life, this from a 9 year old girl. My heart bust open and gushed. It was horrible.
It took six months for the night time tears to stop flowing.
Remember, as a mother, your instinct with your children or ANY family member is VALID. Make people LISTEN.
My 9 year old, one year after returning to medication, has finally regained her level of wellness, but under the surface, it is there, causing her to fatigue earlier than other kids....etc.
AS for me, I have never regained the level of wellness i had before lyme disease. Like you said, the kids are doing better, but I am probably only 50% of my former self.
We did find with the kids, after several years of treatment, that they had subclinical babesiosis, and when we treated the babesiosis, they herxed and got much better.
Subclinical......sometimes sweats at night, arthritis that lyme treatments were not getting under control......sometimes headaches....very suspicious stuff.
Most the time, for all of us, there was one medicine combination that worked the best, and we keep coming back to it.
WE DO rotate off the combination when the doctor decides to tweek it, but then we always come back to it.
Will you have to take medication forever....well, that was answered pretty well by others responding to your post. Who knows. We are like snowflakes in our lyme disease and treatment responses.
Will a lyme doctor treat you forever.....I would like a private message response that lists potential doctors for this situation.
My current lyme doctor is a very great man, but we are getting whiffs of being pushed out the door, as he racks up one "remission" after another in the name of Jesus Christ. Remissions, I think, are very personal to him, as they attest to his faith.
But, for my family, this meant two family members being taken off to slide backwards.
Now, remaining lyme symptoms are being referred to as "aging." I get the feeling that he will not go the long, long road with us.
We will wait and see. He is a wonderful doctor in so many ways.
By the way, I do believe in healing through Christ, but I live with my body and my children and husband, and am finely tuned to their progress and their slips.
It's a long, long road.
Best of luck to you. I hope you find answers to your questions. I ask the same ones. I think we all do.
Mary
Posted by lymewreck36 (Member # 4395) on :
Oh...forgot to say.....Milk Thistle has been very helpful to us. But, do not take it in close proximity to your medication, as it is literally a filter, and you do not want medication interferred with.
Mild Thistle was originally recommended to me by a llmd in CT.