posted
I am currently taking ceftin, biaxin, welchol and plaquenil. Do any of these help with bartonella? As I have many more neuro issues and not much joint pain, I am thinking that my primary attack should be on the bart...??? Thoughts?
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
One month of Rifampin/Biaxin and then 2 months of Rifampn/Bactrim seemed to clear my bartonella
Posts: 19 | From Rockville, MD | Registered: Nov 2009
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
I've been keeping notes from what I've read on lymenet and it took me quite a while to make this list.
For some reason, it was really important to me that I knew what drug was for what illness, so I understand your questions about it, Tri. Like we want some control in our treatment plan. Or at least some understanding.
I'll share my list with you, Tri. Actually, I feel kind of vulnerable sharing it. It took me 5 months to figure this drug puzzle out. There are probably lots of mistakes on my list so please make corrections, friends, but try not to be harsh with me. Not sure why I feel so sensitive about it.
posted
Thanks so much! It looks like the biaxin and ceftin that I am currently taking could, then, be attacking the bart...but it looks like I may need to add bactrim for the People's Choice Award for that?! I also heard that bart responds rather quickly to treatment, but it's the lyme that takes long? I have been treating for over 2 months and have seen little to no improvement...any thoughts?
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
I've only heard about Bart that it is very hard to get rid of.
Rifampin & Zith is the combo that gave me the most improvement and for the last 3 weeks I would rate my health as maybe 90+% of normal. I am so thrilled!!
I was on quite a few Bart combos that I didn't understand. I questioned my LLMD (in my head, not to his face) pretty often. Looking back, I wish I would have saved myself the stress of that and just trusted that he had a plan and knew what he was doing.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
90% of normal...good for you, 17hens! I really think that most of my problem is bart, since I have always had more neuro than muscular-skeletal (except, of course, for the annoying muscle twitching everywhere 24/7!)! I think that my LLMD may need to start attacking that more though...
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
I'm sure not a Dr. nor have a degree in medicine, so I really wouldn't want to tell you what you should take to attack your Bart.
Your LLMD should be the one to answer this question. Do you have that type of relationship with him/her to ask them about this matter?
I trust my LLMD to know and be up on what is the best treatment for my 'bug'. Decisions on if I want to take or do what he says then is my responsiblity.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Tri, yes I agree with hadlyme. Your LLMD especially has an excellent reputation for knowing and understanding abx.
Try to allow yourself to trust him. I don't think he'll let you down. And you'll be a lot more peaceful in the process for sure.
This race is a slow and steady one. The people who try to do it fast don't end up being winners. Sorry, but that's the truth.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
Hello. I hope it's ok for me to ask this question here...I don't want to break the code of conduct.
I use an LLMD in Jackson, NJ and am curious as to whether anyone here is familiar with her and her reputation/ability.
I'm about to start Cefzil for lyme/bart, yet she told me that Cefzil doesn't do much for bart. However, I'm on no other prescription, so what will happen?
My apologies, I'm managing this flare and in that bad place where we, as lyme patients, start to doubt and question everything.
Thanks so much.
I hope you're all doing well. jwick25
Posts: 711 | From Bucks County, PA | Registered: Apr 2008
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canefan17
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posted
Japanese Knotweed
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
jwick25, is she ILADS trained?
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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quote:Originally posted by 17hens: jwick25, is she ILADS trained?
I'm not sure if she is ILADS trained. She is lyme literate (has it herself) and came recommended on these boards.
I just took my first cefprozil pill and am sitting here hoping that I don't have a bad reaction...lol. Always something.
Posts: 711 | From Bucks County, PA | Registered: Apr 2008
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posted
Sorry to intrude, but how does Amoxicillin fare for treating Lyme and Bartonella? Does it cross the BBB?
My LLMD wants to put me on Ceftin and Doxy, but I'm a little wary of Ceftin...
Posts: 14 | From Dallas, TX | Registered: Jun 2010
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
WONDERFUL list 17hens, thank you! I'm so thrilled to see I'm on the People's Best Choice Awards for Bart and Babs. I need to get rid of these suckers for once and for all!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
I was just prescribed Ceftin and Bactrim for my lyme/bartonella.
I read up on it on a drug site, and read countless pages of horrible reviews.
I am terrified to take it! Is this a dangerous drug that is poorly tolerated?
I wonder if I should ask my LLMD to prescribe a different drug to take along with the Ceftin. maybe Biaxin?
Posts: 711 | From Bucks County, PA | Registered: Apr 2008
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posted
jwick25 - i currently am on ceftin/bactrim/rifampin all together. Each person reacts differently to drugs. I have no ill effects to speak of on this combo.
You should always make an informed decision on your own but know that if you type any drug into the "net" and look for people that have had bad reactions you will scare yourself to death.
All i can do is offer you my experience. i have been on almost every drug out there for this disease and had to stop only one because of a bad reaction - that drug was cipro.(also IV zithro had to be stopped b/c of ear problems)
I stopped them right away with no lasting effects. We all take risks in an attempt to win the fight. having said that you are correct in doing your homework.
Posts: 137 | From wethersfield ct | Registered: Mar 2006
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posted
Thanks for posting this great information!
Posts: 243 | From Charleston, SC | Registered: Oct 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
There is a list somewhere of drugs effective against bart. Starting from least effective but safest, to most effective but dangerous it goes something like this:
Levaquin gave me tendonitis but it knocked the bart down. Only trouble was I was so floxed I could not take any other chemical for 8 month and completely relapsed. Rifampin did not seem to make any difference. Bactrim DS with zithro, biaxin or roxithromycin is helping - slow going but a steady improvement.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Jwick 25: I am seeing the same Dr as you...she is ok...just a little too wholistic for me...but really cares about her patients..Dont expect to bee seen on time..she has no office mgt skills .. Under her care I am about 95 % better than when I started...HTH
Posts: 27 | From delaware | Registered: Dec 2009
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I agree...she cares about her patients. However, she has recently done a thing or two that raised flags for me.
I think that - possibly - her heavy patient load has her rushing around like crazy. Unfortunately, that could lead to mistakes and overlooking important factors.
For me, I came to realize that my bartonella was not really treated properly. It's probably why I'm relapsing.
I just saw another LLMD for a 2nd opinion. Posts: 711 | From Bucks County, PA | Registered: Apr 2008
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I also heard that bart responds rather quickly to treatment, but it's the lyme that takes long? I have been treating for over 2 months and have seen little to no improvement...any thoughts?
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