Recently I changed from 200mg of doxy b.i.d (Twice a day) to 1000mg Amoxi + 500mg Biaxin b.i.d.
I was doing exceptionally well on the doxy and just before changing had a few semi normal days.
Its now 2 weeks after changing and slowly the symptoms have crept back. It hasnt been like a sudden onset but just day by day the symptoms return.
So my question is:
1. Does this sound like a "slow onset" Herx or does it sound like the meds are not as effective?
For me and from the reading I have done so far this is a bit of a grey area.
I would appreciate your advice before I annoy my LLMD.
Cheers Shangs!
[ 16. October 2006, 12:19 AM: Message edited by: ShangSD ]
Posts: 34 | From China | Registered: Aug 2006
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hey there shang a lang a ding dong!
You have to be very diligent at recording your symptoms.
It sounds like possibly this combo is'nt working for you, however, you won't know for sure until you go thru a complete monthly cycle.
or two
also the ammoxy dose is too low...I believe I was never on any lower than 1500 twice a day....
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Hiya Shangs
I'd think it's very possible that the meds are slowly building up in your system. Of course I could be wrong but it doesn't sound impossible.
If you are able to last a month or 2 on them you should be able to tell. It maybe you're in the part of your cycle where you're more symptomatic.
You will have times you feel better and times you feel way worse but the good ones will come again.
I hope they hurry back soon. Hang in there!
trueblue
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
Cheers Zlymie and my Aussie friend wannabe Trues
Think I am going to try and "stick it out" a while longer. Stupid disease, gives you a glimmer, then BAM!
Based on everything I have been reading I also feel that my Amoxi is too low. When should you change?
Last time I was told by my LLMD to continue maitenance of 100mg doxy b.i.d. BUT I cheated and doubled it because every study that I read said it was too low, 4 weeks later proved to be the best thing I could have done and my LLMD agreed.
I know I need to follow my LLMD's advice and as he is one of the best I should be trusting but I wonder how many other people here have "slightly modified their treatment amounts"? It worked last time
Ahh the fun of the most uderstudied disease currently on the planet.
Steve
Posts: 34 | From China | Registered: Aug 2006
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Why did your Dr. take you off the doxy if you were doing exceptionally well? Just a thought maybe the Doxy was supressing or working on a co-infection. How long were you on it?
Ahh, the mysteries...
Posts: 465 | From New York, NY | Registered: Aug 2005
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He took me off because I still had high IgG titers for H. Pylori. He thought we should make sure to get rid of it.
However it was only IgG and he also said if I had a H. Pylori infection that i should not be able to tolerate the Doxy, even though I was able too.
So probably proves Z lymies past comments about H.Pylori and Borrelia cross reacting.
Maybe it was a wrong call, not sure, but I will keep fighting and hopefully I dont get worse. In the case I keep slipping I will annoy him to see if he thinks to change back. He was also umming and arrghing when he made the decision.
fun fun Steve
Posts: 34 | From China | Registered: Aug 2006
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I had the high IGG 2 years after H. Pylori treatment with the amoxy and biaxin. My Gatro Dr. Was convinced that I never got rid of it, A breath test turned up negative. I had an endoscopy, 4 samples no h. pylori.
I did not know about the cross reactivity. Makes sense both spirochetal.
Seems like a pretty potent combo as compared to the doxy alone. Herxing seems to be so different for everyone, how do you know? You probably need more time.
Doxy-no sun sun
Posts: 465 | From New York, NY | Registered: Aug 2005
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Hi,
Although I am more than 2 years into treatment, I find myself in a similar situation. Just started Ceftin about 6 weeks ago, and it seems to have been SLOWLY downhill (with a few good days) since then. I never learn how to tell if it is a herx (when it isn't sudden/obvious) or when it is decline (meds not working)...It's very hard to know, you just have to stick with it a while and see if it improves and results in you feeling better than before. If not, I guess you need a med change.
I think you're seeing Dr S (If I remember correctly from EL), if so, is he addressing or considering any coinfections?
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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posted
Marsy I also had biopsy with no H.Pylori. Did not have the breath test but they did find a healing duodenal ulcer which is now fully healed, at least no my ulcer type pain.
My LLMD said that its very easy to miss H.P. in a biopsy.
Liver All my co-infection tests were negative. LLMD, Yes the famous Dr. S from CA, said they were more rare than most people like to believe. I was surprised by his comment. I was positive on the Lyme IgG for band 45, which I have learnt often shows if you have erlichiosis.
Perhaps the 6 weeks of doxy hit the erlichiosis and now my new meds are working on the Lyme.......perhaps, perhaps, perhaps.
Seems like a big guessing game.
Just keep plugging on! Thanks for all the replies Steve
[ 15. October 2006, 05:44 AM: Message edited by: ShangSD ]
Posts: 34 | From China | Registered: Aug 2006
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
I didn't realize that Dr S was THAT conservative with the coinfections.
I forgot to say that I was also told I had H Pylori just before starting my Lyme treament in 2004. However, I could not tolerate the Flagyl which was part of the treatment (if I remember correctly) and so I never finished the treatment for H Pylori, and just jumped into the Lyme treatment.
About a year later, after I'd been on Biaxin 9 months, Bicillin 4 months (and Mepron), I was retested for H Pylori and it was negative. I also had an endoscopy and biopsy, and they were also negative.
My GP said that H Pylori can 'go away by itself'. Not sure what to believe.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
OK Shang...how did you remember that crossreference I told people about!?
Glad someone is listening...
Anyway liverlips...the prevacid treatment for Helicobactor Pylori.....does'nt include flagyl...
It's just Trimox(amoxicillin{penicillin family}) and Biaxin(clarithromycin{flouroquinolone family or macrolide family})
and an acid reducing drug called prevacid(lansoprazole)which is where the flagyl or metro or tinidazole comes in...azoles....
Anyway...two thirds of the WORLDS population have h-pylori. This disease is the major cause of duodenum ulceration....
If you have resistant persistant lyme disease the chances of testing positive for h-pylori even after abx treatment are great due to crossreferencing in test methodology or similar proteins.
The funny thing is...you might also test negative for lyme and positive for h-pylori and be asymptomatic for h-pylori but VERY symptomatic of lyme.
In other words for some labs...because their testing methodology sucks for lyme...you can conceivably consider a positive h-pylori test as being inclusive of a positive lyme test...
See what I mean...hope so cuz now I'm confused...LOL
too early in the morning to be thinking this hard.....whew!
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
DLL I think Dr. S is following the IGeneX test results which for all co-infections for me came back without even a slither of anything! I know its common but other than some night sweats at the start of my illness there hasnt really been other signs.......not that I would be able to tell the difference anyway!
I guess time tells all.
I would be interested to know the true incidence of co-infections. Another seemingly Grey area!
Zlymie
Listening loud and clear....as long as I dont lose my hearing!
Actually there are many possible protocols for getting rid of H. Pylori and I have seen one that includes Flagyl. Its only that most studies show greatest success with Amoxicillin, Clarithomycin (Biaxin) and a PPI - Proton pump inhibitor (stops the proton pump from producing acid). Then there are protocols for those that are allergic to Penicillin.
So what do you think - if you have trouble getting meds, tell your doc you think you have H.Pylori infection?
SD
Posts: 34 | From China | Registered: Aug 2006
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"B. burgdorferi has the ability to make cystic forms both in vivo and in vitro, e.g. when exposed to antibiotics commonly used for treating Lyme borreliosis.
This phenomenon, combined with the ability of the cysts to reconvert to normal mobile spirochetes may explain a reactivation of the disease after an illusory cure - and not a ``post Lyme syndrome'' as postulated by other researchers.''
``Helicobacter pylori is also [like B. burgdorferi] capable of transforming to coccoid (cystoid) forms and reversing to normal mobile forms, and for this bacterium treatment with three or more antibiotics has been established. Therefore duel medication with MZ [metronidazole] as one of the antibiotics could be of value, also for curing infections caused by mobile and cystic forms of B. burgdorferi".
Now it is starting to make more sense!
Cheers Steve
Posts: 34 | From China | Registered: Aug 2006
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posted
Wow, Steve....I do hope you can switch to a dr who will treat for babs no matter what. Maybe you won't have to do that....but DO keep it in mind if later on you do not progress.
Interesting tidbit you found!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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