I had my first appt with my LLMD on two days ago (8/6). She recommended:
-a lot of bloodwork to test for coinfections and other infections
the following meds, in addition to the IV ceftriaxone 2g 1x per day given by my infectious disease dr:
zithromax 500mg IV (she figured she would take advantage of PICC);
plaquenil 200mg 1x per day for one week, increase to 2x per day thereafter;
actigall and some other herbal supplements/probiotics.
she says I should be on the meds for 6-8 weeks.
what do you think of this regimen? I am nervous about taking so many meds and am especially worried about how to wean off of them.
also, should I expect to become symptom-free while on meds, or does that only happen after the meds have stopped?
any advice/comments welcome.
Posts: 7 | From northern virginia | Registered: Jul 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Did you catch this right after a tick bite? That is the only time I have heard of treatment being so short.
If it's right after a tick bite, you should be symptom-free for four weeks prior to stopping treatment according to Dr. B's guidelines on www.ilads.org
You are on a very good combo.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
hi - I don't recall a tick bite but I do have a vague memory of pulling a tick off in the spring; sometime around march.
I started showing symptoms in march/april 2008.
does that help you evaluate the protocol?
I think the doc will move me to orals after the IV is complete.
Posts: 7 | From northern virginia | Registered: Jul 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Oh, okay, that makes a difference! You are not stopping treatment, just moving to orals. It's a good protocol. Looks like you are in good hands.
Be sure to take probiotics, and you might read Dr. B's guidelines if you haven't already, as he has a lot of info about diet, supps, exercise, sleep, etc.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Who did you see? PM me, tell me what you thought of the doctor?
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: I had my first appt with my LLMD on two days ago (8/6). She recommended:
-a lot of bloodwork to test for coinfections and other infections
Good, that's wise. Who did she use to run the testing?
quote: the following meds, in addition to the IV ceftriaxone 2g 1x per day given by my infectious disease dr:
zithromax 500mg IV (she figured she would take advantage of PICC);
plaquenil 200mg 1x per day for one week, increase to 2x per day thereafter;
actigall and some other herbal supplements/probiotics.
Good, that's the correct routine. She's using IV Ceftriaxone to get a systemic response, primarily to kill extracellular infection. She's then using Zithromax, or Azithromycin, to get the intracellular infection. She is then using the Plaquenil as both a cyst buster (Lyme goes into cyst form when exposed to IV Ceftriaxone), and she's also using the Plaquenil to help the Zithromax penetrate into the cells intracellular wise, to get into endosomes, and parts of the Mitochondria, where Lyme Disease prefers to reside within cell compartments.
The Actigal was just an extremely wise move, to protect your galbladder from the detrimental effects of IV Ceftriaxone, which is notorious for creating gallstones and causing sludging and inflammation of the gallbladder. The Actigal will protect the Gallbladder to a good degree, so you don't end up having to have surgery like many unfortunate Lyme patients.
What are the herbal supplements? The probiotics are a wise choice, primarily because you're not using extremely high doses of oral medications, and thus they have a chance to actually implant. Which brand did she recommend? What brand are the herbs from as well?
quote: she says I should be on the meds for 6-8 weeks.
what do you think of this regimen? I am nervous about taking so many meds and am especially worried about how to wean off of them.
Don't worry about weaning off them. You'll have no problem. The time frame is not set in stone, so do not expect this problem to be solved by that time. Consider this an open ended process that "might" be over in 6-8 weeks, or, one that could go on for years. It is unknown how your particular infection (We don't know which strain you have, or which combinations of co-infections you have).
Also, expect treatment to change, if she finds out viral or bacterial, or other parasitic infections are present. The entire protocol is subject to change, though I do believe she'll continue to make use of the PICC line either way.
quote: also, should I expect to become symptom-free while on meds, or does that only happen after the meds have stopped?
Expect to get worse soon, and you "might" see some improvement within 3-4 weeks, perhaps you'll be symptom free, or perhaps you'll only see partial improvement. You may see "no improvement" too -- so be open to the possibilities and realize there is no guarantee at this time.
Once we know more, it might be wise to add a cycline into the picture, like Minocycline, Tetracycline or Doxycycline. If the doctor is really willing to leap off the edge suggest Tigercycline to her. Since you have a PICC line, she may be able to administer that, and it's currently showing extremely positive results. She won't bring it up unless you do. She can contact Dr. K in Orange CT or Dr. P in Wilton, she'll know who they are -- if she's interested.
I doubt you'll end up going that route, but it's an interesting one to consider, whether you have co-infections or not, that's a powerful consideration.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
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