posted
Why do protocols, amounts, combinations, order of treatment, and delivery methods, vary so widely? It's very confusing.
There's what my Dr. says, the Dr. B guidelines, everyone's advice through experience on this board, other protocols and doctors. Some of these are similar and overlap, but are not entirely the same.
My Dr. says to take a medication one way, then on the board I read to do it another way, I call the pharmacist and I get another opinion.
Then I wonder if I'm getting enough of one and why it isn't in combo with something else.
For example, why does my doc have me continually on artemisinin at a lower dose, and many take it at a higher dose, in a certain order, or take it for only a certain period of time and then stop?
Why does she tell me it's OK to take cumanda and samento at the same time, and I read elsewhere not to?
Why does the pharmacist say to take my Omnicef with meals, the same time I take my other meds/supplements, yet the info sheet says do not take it with supplements?
You get the idea. I'm taking herbals and pharmaceuticals, some on an empty stomach before meals, others with meals, and others in between and at bedtime. I've miraculously worked out a schedule, but don't know if I'm flushing the meds out or absorbing them.
Then I read to take certain meds with fatty foods (cholestyramine and mepron). If I do every single thing correctly I'll be up for 24 hours a day. My stomach can only handle so much.
How can we do the best we can do with so much conflicting info?
Posts: 873 | From WA | Registered: Dec 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I usually defer to my doctor for the final answer.
Remember, info you read on this board is not medical advice, it's just people's experiences. We learn a lot from it, but we may have experiences different from you that impacts how we take our meds.
I believe pharmacists are good for answers on interactions (drugs that shouldn't be taken together) and signs of an allergy or harmful reaction to the drug. They don't know anything about dosage for Lyme.
There are many reasons for differences in protocols and combinations.
Different combinations are prescribed for different co-infections. They are also prescribed for different stages of treatment.
Doctors also change protocols depending on how the patient reacts. Some people just don't progress on the drugs others do progress on.
Dosage can vary by your individual weight. My LLMD prescribes lower doses for me because I'm under 120 lbs and I'm sensitive to meds.
Then, we need to remember, there is a lack of research.
Does this help at all?
-Aniek
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Yes, and basicly the problem is lack of knowledge.
If there would be an always clearly working treatment for late stage LD, we wouldn't have that situation. Everybody is fishing in more or less muddy water.
Practically it means we have to make decisions which informations and persons to trust.
Posts: 71 | From germany | Registered: Mar 2006
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posted
Aniek, Yes, it helps a lot. My doctor has been very good about adjusting the meds according to my responses. I'm also sensitive, and I herxed very intensely at first so that I became weak and non-functional.
She changed meds that I reacted to, lowered dosages at times, and has me cycling the ABX. She kept me on zith for a long time, w/herbals until she recently added in new pharma drugs, one by one, slowly, to watch my reaction.
I tested negative for TBD co-infections, but she is still treating me for them.
So, now that I think about what you said, and what I wrote, I do believe that she's doing a very good job, it's just overwheling at times, and, like everyone here, I want to get as well as well can be.
Thank you for your rational response to my freak-out.
Posts: 873 | From WA | Registered: Dec 2005
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posted
Yes, 777, it's difficult to see clearly enough to know who to trust, and what information is trustworthy. And the lack of knowledge and research keeps us further in the dark.
Posts: 873 | From WA | Registered: Dec 2005
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posted
Hi Hopeful, The elementary explanation I was given was that this is a bacteria that behaves more like a virus and so tough to kill! What works for one, may not work for another....depending on genetics, symptoms, co-infections etc. I have tried many many combos and I am still very sick but I am encouraged that there are more to try just hope something will work! You will learn so much from this board...I have and am so thankful. Betsy
Posts: 107 | From VA | Registered: Mar 2005
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