posted
Okay I have llmd on Wed. These are the abx I have been on with reactions.
Plaqeunil= very strong herx but stopped before (this isbefore I knew what a herx was
Minocin + Flagyl = great improvement but relasped while on it. never symptom free
zithromax alone= no herx
added mino back to = herx too strong had to stop zith
Minocin + Flagyl+= Same,relasped while on zithromax (2 yrs) flagyl makes me herx hard
clindamycin iv + = I only did 5 days of clindy I minocin herxed for a week,
malarone + mino= no herx
Doryx + plaquenil = herx hard but the only time I saw signifigant progress but relasped again while on it. yet never symptom free
levaquin= tendon issues after 4 days llmd said stay on it couch for 2 weeks with tendons stopped at 9days
doxy + rifampin = current I herxed and have been on this combo for 11 weeks. no improvement yet but I know its early
I have had igenex,mdl,and stony brook testing alot and always neg. for all co too. Postive for mycoplasma and cpn.Had bart from galaxy labs and neg.
Whole family is sick including dog and mother in law (which took care of me for a month when I first go sick). She was diagnosed with adult onset asthma and has a herx like reaction to abx when before that could take any abx without a reaction. Seems to be a 2 year span until symptoms show. I have never seen a tick in my life nor have my mother in law or children. I know that means nothing.
I can't have testing at fry labs because I am in NY, unless someone has a way around it.
All neuro symptoms and not functioning.
Where do I go from here? Anyone have any ideas what I might have according to my reactions to abx?
Thanks so much for any help or direction. Sorry so long
Posts: 433 | From new york | Registered: Dec 2004
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Check into the possibilty of parasites. Do a search on here under parasites and also google parasite symptoms.
Parasites can be passed on easily to family members. Parasites can make you VERY sick. Maybe try an antiparasitic herb like Parastroy and see if you herx from it.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
You were mentioning that you relapsed while on abx.. Are you sure you were relapsing or were there just new symptoms coming out? Sometimes it's hard to distinguish between the two. If the herxes are too strong you can always back off the abx a bit. Detoxing can help with this.
Malarone should have been taken with a macrolide like Zith or Biaxin..
I would think you should notice some improvement on the Doxy and Rifampin after 11 weeks..
It appears to me that you have made some progress every time you used a cyst buster like Flagyl and Plaquenil.. Maybe you never stuck with it long enough.. Flagyl should be taken for 2 months max.. Plaquenil is same.. You can always add in Tindamax (also cyst buster) Although we found Flagyl to be the best out of the three. Maybe incorporate one of those with your current regimen.
posted
How long have you been in consistent treatment? A relapse means you got off treatment and the symptoms came back. Is that what happened?
It kinda sounds like you need to treat with whatever made you herx the most and KEEP GOING.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
I did antibiotics for 6 years, on and off. I think my abx days are over. I always got better on abx but last time worse. Doing herbal teas. I did abx Iv till I was better, got off, relapsed, back on gain. Three times till this time abx did me in. Just keep tryin till you hit it right, it's just so hard. Feel good and keep going.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Also check your building for mold if your fam lives together.
What did your lyme western blot look like?
You could try high dose amoxy with probenecid. You need to pick a med and try to tough it out a little. Herky-jerky treatment won't get it done.
However, you can pulse certain meds but it has to follow a consistent schedule.
Good luck.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
I have been doing this 8 years. I have stayed on the meds at least 9 months with the combos. The first 2 months would be brutal. Then I would notice windows and the windows would get longer. Then I would go through a period of 2/3 months of not too bad then without changing or stopping meds I would go into a flare. I would stick it out for 6/8 weeks thinking it was a herx but I would just get sicker and sicker.
I think I am allergic to amoxicillin. I did a trial of penicillin and was fine,but some people can;t take amoxy. The last time I took it I developed hives.
My igenex shows no signifigant bands.
I was on flagly, mino and zith (the zith was mwf) for all of last summer april-july. On july 26 on woke up in a flare. I stuck it out for 8 weeks and could not pull out of it.
I have had stool culture done for parasites and it was negative. Is there a test I can do that will look for that.
W
Posts: 433 | From new york | Registered: Dec 2004
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Most parasite testing is not accurate. I had negative testing over the yrs, and had a TON of parasites exit when I started antiparasitic herbs and salt/c.
If you try one of the antiparasitic herbs and you start herxing, that would be indicative that you have parasites.
It is said that over 90% of the population has them, and people with Lyme are much more susceptible. Dr. K. treats ALL of his patients for parasites first.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
My parasite testing was negative yet I had significant, visible parasites.
Also, I think vitamin and mineral deficiencies can be more significant than we give them credit for. Think about when people were dying of scurvy. Who would have ever thought that it was something that could have been cured by eating fruit?
If you're deficient in minerals, you can't detox.
I would suspect mold or parasites to be a problem since your whole family is sick. These affect the whole family if everyone isn't susceptible.
Also, I had some meds that made me feel better, and others that made me feel worse. It was still Lyme. For example, I could go from relatively functional to bedridden if I took a full dose of zith for a couple days. I never would get used to the zith, I just couldn't handle the cytokine reponse it caused.
It's a tough disease to sort through, that's for sure.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Remember to Smile
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posted
Dear cleo, In terms of LBb & co-infections, it seems you may not have adequately treated for Babesia.
The most successful ILADS-active LLMDs in the Eastern U.S. recognize that babesiosis must be controlled before bartonellosis can be adequately treated. And bartonellosis must be controlled before neuroborreliosis can be put into long-term remission.
The well-known Dr K of WA also writes that these co-infections be treated in this order: Babesia, then Bartonella, then Borrelia.
Remember that Babesia are protozoans, more like small animals than the spirochetes or any bacteria.
Treating Babesia with Mepron or Malarone along with zith, clarithromycin, bactrim, or other appropriate pairing may require 6 months to several years to control the symptoms of babesiosis. Probably five months minimum.
If during tx with Mepron/Malarone you weren't ingesting 25 to 27 grams of total fat along with the dose, then you may have wasted time & $$$. The active ingredient is "barely water soluble," so fat is required to assure proper utilization in the body. Spread the word!
Many patients test negative for Babesia, yet show clinical symptoms obvious to top LLMDs. There are dozens of Babesia species that can impact human health, but only two are generally screened on the common tests (B. microcoti and B. duncani).
Other posters have offered ideas that may be of great help in your healing, too. For an organized overview, I find it helpful to refer to Dr. K's protocol. Very thorough!
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