What have we got?
Posted by seibertneurolyme (Member # 6416) on :
Ali,
I guess you are asking what combo of meds will treat all these infections at once?
Hubby is taking 5 meds -- added one at a time and took him 4 or 5 months to get to therapeutic dose on all meds -- doc says need to be on all 5 meds for 4 - 6 months at therapeutic dose to get rid of Bart/BLO and Babs. Of course additional Lyme treatment will be needed once the Bart and Babs meds are stopped.
Hubby got up to dose on Babs meds one month before getting there on the Bart meds.
Babs symptoms are much improved and also as reflected in bloodwork.
Bart is another story -- after being at full dose for 1 month the last 2 weeks he has been having severe herx reactions. Have a call into the LLMD to see whether to decrease meds or tough it out.
These are the 5 meds -- note hubby did Levaquin first -- 2 months at 250 mg and then 3 months at 500 mg before switching to other Bart meds. If you can tolerate it then I do feel that taking Levaquin or Cipro will make it much easier to eventually take the Rifampin -- the other 2 times hubby tried Rifampin he never got above 50 mg.
Bactrim -- for Lyme and Bart
Alinia -- for Babs -- have been told by LLMD that this med includes Flagyl plus another ingredient
Minocycline -- for Lyme
Rifampin -- for Bart
Zithromax -- for Bart, Babs and Lyme
Note -- hubby takes the Zith 3 days per week and the mino 3 days per week -- not on the same days
Bactrim is 6 days per week and the other 2 are 7 days per week
Now to further complicate the picture -- I have been adding in some herbs -- plan is to continue with some herbs once hubby comes off Bart and Babs meds
Andrographis -- now up to 2 pills per day -- plan to add 1 pill per month til get to 6 per day -- most he ever took before was 4 per day for about 3 or 4 months -- not on antibiotics then
HH (Zhang brand) -- Took 3 per day for 6 weeks I think -- then 3 or 4 weeks off -- tried to restart but stopped for now during herx reaction
Sarsaparilla -- 6 per day -- plan to switch to a powder made into a tea soon
Resveratrol -- 2 twice per day -- plan to switch back to Japanese Knotweed formula -- think it was more effective than the formula I am currently using
Cat's Claw -- 2 three times daily -- this never has seemed to do much that I can tell
Astragalus -- 2 three times daily -- to increase WBC -- does seem to be helping -- plan to switch this to a powder made into a tea also
Note -- all herb capsules are 500 mg or thereabouts -- I generally buy Vitamin Shoppe brand or whatever is cheapest
As I have said before -- I seem to have a knack for making hubby sick -- what seems to have triggered the herx reaction was some Spiro Kete from Kroeger herbs -- 2 three times per day (I did one of those things you should never do -- started him a t full dose) -- I had this in my stash and decided to give it a try. It is a combination capsule with the primary ingredient of monolaurin (sometimes listed as lauricidin -- from coconut oil).
Anyway -- the Spiro Kete seems to be trying to work on either Bart/BLO or mycoplasma -- hubby has never been officially diagnosed with mycoplasma. Neuro symptoms are pretty bad right now and Cold Agglutins showed up in bloodwork again for the first time since last fall when we first tried to treat Bart aggressively.
Will add back the Spiro Kete at lower dose in a couple of weeks.
I do plan to use up the last 8 or 9 days of Cryptolepsis we have left at some point in this treatment -- the first 10 days seemed to help with Babesia spring of 2007 then the next day or two landed hubby in the ER and hospital -- this is when the Bart got really out of control.
Someone posted a thread on here recently from Planet Thrive where Buhner listed cryptolepsis as a possible Mycoplasma herb.
Take care and let us know what combo you end up on.
Bea Seibert
One more comment -- I think Selma was right -- the spice cardamom seems to work on Bart/BLO. I gave hubby 1 capsule 2 days in a row -- won't be trying that again either for a while.
Also note -- with all these meds hubby is on strong liver support -- we do have a herbalist who is working with us as well as the LLMD.
Posted by johnnyb (Member # 7645) on :
Good Post!
I believe Bactrim will hit Babesia as well, seibert.
- J
Posted by AliG (Member # 9734) on :
Thanks Bea!
I printed this out & took it to LLMD along with my plan that I intended to pitch.
He's letting me give it a shot, I have to organize my reasons & stuff before I post it and I don't have time right now.
I was looking up the interactions & Rifampin can interact with a lot of other things. I believe the HH may be similar to the quinolones (?) I know it's like an ABX.
I'd be really careful about adding Herbs, that haven't been intensely studied for interactions, to a protocol with Rifampin.
I'll have to see if I can find my Zhang book to check the comparisons to ABX & check for interactions.........
Posted by seibertneurolyme (Member # 6416) on :
Ali,
Glad you found this helpful.
LLMD's wife has the same 3 infections as hubby -- Bart, Babs and Lyme. She has been treated with this same prescription med combo. She is a year or so ahead of hubby in treatment. Thinks she has gotten rid of Babs I think. Has been on the Rifampin for about a year I think so obviously 4 - 6 months aren't long enough for everyone.
She was misdiagnosed with CFS/Fibro for 10 or 15 years prior to tickborne treatment. Every time we see her (she is the new patient coordinator for the doc) she seems to be doing better. Hubby has been very encouraged by this even though her symptoms were not primarily neurological as his are.
Yes, I am trying to be careful with the herbs. But after 7 years hubby really wants this to be gone and so do I. We felt the herbs were extra insurance as they obviously work by different mechanisms than meds. And so far Babs has been very treatment resistant.
Having the herbalist on board does serve as a backup and I do try to wait until he has adjusted to any med changes before adding or changing any herbs.
Hard to believe, but hubby actually has problems with low liver enzymes -- not high. Haven't exactly figured that one out -- lab manual listed some possibilities, but so far no explanation.
Hubby does do CBC's, CMP, hepatic panel and UA every 2 weeks -- was monthly but switched when finally got to dose on everything.
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