seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I have officially been on Biaxin for 35 days now at essentially full-dose (1,000 mg daily).
My LLMD is kind of vague with drug transition and says to stay on what helps and move on if not. Helping means a lot of stuff to different people. For example, it could mean symptom suppression, it could mean causes a herx so you know it's killing Bb, and 50 other ideas.
I feel Biaxin has made some headway for me, but my stamina is still poor. I seem to have stopped having any significant herx on it. THis is very surprising given 500 mg took me to my knees 1.5 months ago after 5 days. Or it could mean my LLMD's suggestion to cut dosage when I herxed generated a super-resistant Bb strain to Biaxin and hence the killing ceased.
The issue is do I add something to Biaxin or toss Biaxin out the door and move on to other options like Flagyl and Bactrim or Mino and Cipro?
i don't have time to take something just because it doesn't feel too bad to do so. I need forward progress - always must improve. Is this the type to say bye-bye Biaxin and hope drug #2 takes me further?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Stay on it if you are still improving.
When you notice that you are no longer improving, you have to change meds.
"Improving" does not mean you are symptom-free. Improving means you notice that some things are better.
Each med will help various things. Don't concentrate on what is NOT better. Look to see if there is anything that HAS gotten better. As long as some thing or symptom has gotten better, stay on the Biaxin.
It will take a minimum of a few weeks to a month to realize that you are no longer improving. When you realize that, you have plateaued. Then, you start a new med.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Shosty
Unregistered
posted
Seek,
I hate to say this, but every antibiotic was like this for me. A lot of action for the few days (herx) then not much at all, for months. I finally just stayed on tetracycline, zithromax and Plaquenil, all at top doses, for 2 years, and the whole time, I was just on a plateau with no progress, but also no backsliding.
When I tried to go off, because of the lack of progress, I would be almost immediately quite sick. So, I figured I would just stay on abx for the rest of my life not to feel better, but to prevent feeling worse.
Finally, I got help getting off and addressed my symptoms in other ways (mainly addressing food allergies). Ironically, once I stopped the abx and dealt with the allergies and some other stuff, I actually have days when I feel a lot better.
I think the story will be different for everyone, but the whole idea of cyclic herxing seems kind of mythical to me. And the idea of constant forward progress, as you said, is not necessarily one to hold onto either.
Don't keep artificial ideas about how things should go, in your head. Does your LLMD switch meds a lot? Have you asked your LLMD about this situation? Have you considered adding some alternative approaches to your protocol? (expensive, but we found an alternative doctor w/in the insurance system).
I tested CDC positive not only with Ignenex but also Quest, both IgM and IgG, so it isn't that I don't have Lyme. It's just that for some of us, the abx don't work that well.
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
TF would you say adding another drug to Biaxin would make sense?
I don't have cylcic herxing Shosty. I too think that's a myth, except for maybe Babesia as TF stated many times.
My LLMD switches meds every 30 days..the patient has complete autonomy to change his/her meds based on how they are feeling and what's helping. It's good and bad at the same time. Flexibility is nice. Guessing whether to stay on drug A or move to drug B is stressful w/o your doc's help.
TF, the Biaxin seems to help with mental clarity, fatigue to some degree, and head pressure.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Seek, I can't speak from experience since I could not tolerate Biaxin. (Biaxin = clarithromycin)
However, I can read the Burrascano guidelines and tell you what they say.
First, do a search for "clarithromycin" when you have the guidelines on line.
You will see what Dr. B. says about what to combine with it. This is what I found:
p. 14 tells you to take it with Plaquenil (hydroxychlorquine) and gives the rationale for this.
p. 18 tells you the dosages of each which are: 200-400 mg per day of Plaquenil and 250-500 mg every 6 hours of Biaxin
p. 21 tells you to try Biaxin with amoxicillin and refers you to p. 12 to explain the rationale--will treat lyme in "2 compartments."
Once you know the generic equivalent of any drug (find it on line easily), you can type that drug into "find" function while you have Dr. B's guidelines on the screen, and it will jump to every reference to that drug, so you can read all Dr. B says about that drug easily.
I am a strong believer in combination antibiotic therapy. But, as Dr. B says, it can cause yeast infections, so be ready to treat or prevent them.
Also, be ready to feel sick each time you add or change meds. That's how lyme treatment goes. You are killing something each time a med or combo makes you sick. So, if you add in a new med and this happens, you can know you are doing something right.
I love the thought of killing lyme in 2 compartments--no place to hide. When my final doc did that for me the first time, I had about 3 days of feeling lousy and then 4 days of half lousy. Then, got better. He had me on amoxi and flagyl, by the way. The sick feeling came at about day 3 or 4.
To make the sick time more bearable, he had me eating lemons and drinking water to flush out everything. Do that the entire time you are treating these diseases. He says lemons are a natural cleanser of the body. He wanted me to eat 4 per day. I never got up to that many, but I cut them up and squeezed them into water and drank that all day long.
Whatever you decide to do, keep a record of what you are doing and how you feel. Add to the record often. This is so important. You will forget otherewise.
Also, make a list of your symptoms, and then when you add or change a med, review the symptom list and see if it improved any of them. If so, you write that in your log. Otherwise, you will likely forget that the med helped you. I often forgot symptoms that came and went. But my lyme doc would record each one I mentioned and ask me about it at the next visit. Then, I would say, "Oh, I forgot I had that. It's gone."
This is what drives treatment. What is making symptoms go away. So, keep a good record.
Many docs have the patient rate each day. 10 = outstanding and 0 = worst day of my life.
By rating each day, you have a good summary of sick times, when they occur (to look for patterns and cause and effect), and how often they last. All good info to figure out what is happening inside you.
Congratulations on getting up to the 1000 mg of Biaxin daily!
By the way, you said in your original post, "it could mean my LLMD's suggestion to cut dosage when I herxed generated a super-resistant Bb strain to Biaxin and hence the killing ceased. "
I really, really doubt that. Don't entertain that thought. If this occurred, lyme docs would have figured it out. Patients cut back on the dose when herxing and do just fine.
Let us know what you do and any change it causes. Your blog, so to speak.
Posts: 9931 | From Maryland | Registered: Dec 2007
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
I'd go iwth what TF said. Add something. I'd add Flagyl or plaquenil.
-------------------- Symptom Free!!! Thank you all!!!!
posted
Seek, you've rec'd some great advice above. I'd say stick with the Biaxin and add Flagyl, Tindamax or Plaq (I think you didn't tolerate the latter? 'cause neither did I).
How about treating for co-infections?
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mojo
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Member # 9309
posted
I did Biaxin and Amoxy for quite a while and made progress. When I plateaued I added Samento (worked my way to 10 drops twice per day)
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btmb03
Unregistered
posted
...or better, why don't you add say Omnicef or Ceftin to the Biaxin?
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
My friends who see a Burrascano doctor were on Biaxin and Ceftin. That combo got rid of lyme for them.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Or it could mean my LLMD's suggestion to cut dosage when I herxed generated a super-resistant Bb strain to Biaxin and hence the killing ceased. ![[Frown]](frown.gif)
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