for those of you who know my story, i was as bad as possible w neuro lyme and other tbds
lyme, babs, bart, and who knows what else yet to be confirmed
anyway, im here to say i did iv roc, iv doxy, tindi, biaxin, diflucan, and a host of other meds and now, along with a stirct diet and exercise regimen, LEVAQUIN is helping me IMMENESELY
basically, if you are under the impression that some other drugs treat bart, like doxy, i ask you to re consider. i have made more progress in the last month on levaquin then i have in 8 months on iv.
anyway, there is much more to the story, but this is the basic gist:
you WILL GET BETTER, EXERCISE, TREAT EVERYTHING, KEEP DIET STRICT, AND YOUR ATTITUDE UP.
i am getting well and u will too.
good luck everyone
Posted by meg (Member # 22) on :
dj--
Keep up the good work, so glad you're improving!
Would you put your story in the success story thread??
Posted by peter j (Member # 11825) on :
Glad to hear you are feeling better. Do you remember for how long you used it until you felt the first imrpovement?
and at what dosage you have been?
Posted by djf2005 (Member # 11449) on :
thanks guys
500 mg daily
about 1 week in huge difference
ill post the success story once it is a success
thanks
Posted by sixgoofykids (Member # 11141) on :
I'm glad you're doing so much better!
I am, too. The first six weeks on Levaquin I felt HORRIBLE! Now, I seem to be feeling better than non-Lymie hubby who is fatigued from caring for me!
I've been about 90% for the past week and a half, up from 65% two months ago!
My monthly herxes still hit hard, so I'm not a success yet, but I agree, treating the bart with Levaquin has been GREAT!
Posted by lymednva (Member # 9098) on :
I'm glad you are feeling better on Levaquin. Unfortunately my experience was the exact opposite.
I was on Levaquin for five months. During that entire time I felt worse than usual,
The herxes put me in bed for days, weeks, sometimes. The fatigue was awful. All I wanted to do was sleep.
Everything I did took an enormous toll on me, just making through the days took everything I had in me.
Just another example of how we all react differently to treatments.
Like I said, I'm glad this is working for you. It did show me I have Bart, and I'm certain I need to treat it again.
At the moment I am concentrating on Lyme and Babs. I finally seem to be seeing some slight improvement. I'll continue on this protocol until I feel I have it under control.
Then perhaps I will return to Bart treatment. I'm certain it's still there. I just feel it was time to do something else, and Babs seems to be an important one to get rid of.
Just a thought, but perhaps all the IV's you had before Levaquin got you ready to succeed with Levaquin.
Good luck with your treatment!
Posted by LymeCFIDSMCS (Member # 13573) on :
This is so awesome! Good for you!! The first break in my life came with using Cipro. Unfortunately, I had to go off of it because of tendon pain, but it made a world of difference with the horrific cardiac problems (most likely from bart) I have had for 3 years.
Posted by Vermont_Lymie (Member # 9780) on :
Congratulations! I hope it is a lasting and improving trend for you, and please keep us posted! I need to treat bart eventually, and am a bit uncertain as to whether rifampin or levaquin works best.
Posted by Andie333 (Member # 7370) on :
I'm really glad you're better and that you've found so much improvement iwth the levaquin.
I started treating bart with rifampin about 8 months after starting abx for Lyme. I herxed badly on the rifampin initially, but I also began to improve rapidly.
A lot of my neuro symptoms vanished completely and others got to about 90%.
I'm glad you're doing so well!
Andie
Posted by seibertneurolyme (Member # 6416) on :
Curious as to whether you have treated Babesia yet? I am not sure you can really get rid of Bartonella until you get rid of Babesia -- remember they are both affecting the red blood cells.
Levaquin is the only antibiotic hubby did not herx on -- took it for 3 months and it was just like taking water pills except it did get rid of his elevated blood ammonia problem. Unfortunately he still has Bart -- found twice on a bloodslide by Fry Labs this summer -- even had antibodies to this one.
Oral Zithromax put him in the hospital, IV Cipro put him in the hospital, IV Doxy is keeping him in the hospital -- not sure what to try next. And these were all low doses of the meds. In the past he herxed horribly on low dose Rifampin.
Trying to decipher bloodwork and decide if he has mycoplasma pneumonia also -- usually treated with almost all the same meds as Bart -- that may possibly explain his severe reactions to these drugs.
Bea Seibert
Posted by daise (Member # 13622) on :
Hi Bea,
Sounds like a nightmare going with your husband's Lyme. Sounds like you're on top of it, as best you can.
I guess that's all you can do ...
Daise
Posted by daise (Member # 13622) on :
djf2005-
Yes! Alright! You are making progress. Levaquin one week and you felt a huge difference. I'm happy for you.
Questions.
How long do you think you'll need to take Levaquin?
Did you get rid of the babs, first? Or do you believe you still have some babs and Lyme?
Is it best to get rid of babs first, if you have it? Then the bart?
You're an inspiration.
Does anyone know the success rate of Fry testing?
Thank you.
Daise Posted by djf2005 (Member # 11449) on :
thanks all for the positive encouragement.
you too will all get there.
i am so happy i feel like i am getting some of my life back
in answer to the general question regarding the succession of treatment:
i treated lyme, then i treated babs w mepron and zith for 6 weeks, then lyme, now lyme w bart.
like i previously mentioned in the thread, it seems levaquin of all the therapies is having the biggest impact on me. which is why i thought id share.
althought i DO belive i have some low load babs still in me, which is not currently that active. my dr has reccomended i take art(he does not feel art has AS an ill effect or die off as say mepron paired with zith) if i feel some olf sx returning.
i have some of the breathing issues occasionally and some chect compression (which i am starting to think is yeast because it seems to resolve with probioitcs). none the less, yes, i do believe i still have a little babs, and will throw in 200 mg art 3x week if i feel my immune system cannot keep it in check.
if i can be of further assistance, please ask.
good luck to all and better health to everyone.
humbly,
derek
ps- we are shooting for at least 4 months of bart treatment. using levaquin as long as i can mentally or physcially stand it, than rifampin if need be. hope i got all the questions... Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by Vermont_Lymie: I need to treat bart eventually, and am a bit uncertain as to whether rifampin or levaquin works best.
Like Derek's LLMD is doing, mine is treating with Levaquin first (three months), then switching to Rifampin. My understanding is that Levaquin is the stronger drug, which is why it's used for a limited time.
I'm treating the babs at the same time ... I'm also on 1 Malarone, Art, and Lariam for the babs. Mino for the Lyme. Plaquenil and Tindamax for cyst-busting.
Posted by treepatrol (Member # 4117) on :
I cant take levaquin I already tore 3 tendons. figures Posted by CaliforniaLyme (Member # 7136) on :
Cipro took away all my remaining symptoms- I think many people have Bartonella & don't know it!!! in my experience the people who have achieved full remission locally are those who treat aggressively ALL TBDs-!*)!)*! Very glad to read it- You have had a long road*)!*)!!!!!!!!!!!!!!!! Best wishes, Sarah
Posted by tdtid (Member # 10276) on :
Always love reading these good stories. Quick question.....I understand that Levaquin and Cipro are in the same family. My LLMD happens to use Cipro instead.
I've been on it for two months, then a break that went to babs treatment, then added the cipro back in for another two months. But with my eye issues getting way out of hand, he was afraid it could be a reaction to the cipro so I'm back off it and just on babs treatment.
Is there any major difference between cipro and Levaquin that would make one better than the other. I did not have the tendon problems so wonder if perhaps there would be even a slight change in Levaquin that may react differently since going to Doxy as he said we may have to do, doesn't sound beneficial from all I've read.
Opinions? Is four months enough, or probably not?
Cathy
Posted by TexasChaos (Member # 7465) on :
I'm really happy for you!!!
I am one of the unlucky ones who had problems with both Levaquin AND Rifampin. I don't think doc knows what to do with me anymore.
Hope your health continues to improve! I love hearing stories like these.
Posted by Lymetoo (Member # 743) on :
Awesome!! Posted by CaliforniaLyme (Member # 7136) on :
Tdtid Cathy- Levaquin is stronger-!!!
Posted by CD57 (Member # 11749) on :
That is very inspiring!! I am 4.5 months into bart treatment with Rifampin and it's not gone.....better, but not gone.....it can get very frustrating, so I am happy to hear about your progress. My LLMD says he has new respect for bart after the ILADs conference....
What were your bart symptoms by the way? Mine are horrible anxiety, bone pain, sole pain, some jerking, and tremors (ieieieie)!
Posted by KauaiGoddess (Member # 11782) on :
up
Posted by sixgoofykids (Member # 11141) on :
I have a rash, not the one that looks like stretch marks ... the one that looks like red spots. I also had (past tense YAY) GI symptoms. I have cognitive issues that may be from the bart, at least we're hoping they are because most of my other Lyme symtoms are subsiding.
I felt better last summer on Cipro (for a GI tract infection), so I was clinically diagnosed with Bart based on how well I did on Cipro. Sometimes it's difficult to differentiate symptoms.
Posted by treepatrol (Member # 4117) on :
quote:Originally posted by CaliforniaLyme:
people who have achieved full remission locally are those who treat aggressively ALL TBDs
I agree completly and that requires time sometimes years depending on infection ,immune responce,etc. Posted by djf2005 (Member # 11449) on :
like someone said above, its nearly impossible to tell which TBD is causing which sx. but, heres my sx for the hell of it:
(all symptoms worse on left side of body, other than neurological symptoms)
-Brain fog, slow mental processing of words, thoughts and ideas. -Visual brain fog, detachment from reality, blurred vision, often off balance and feel ``drunk'' -TMJ with jaw pain and pressure -Head pressure, changes from frontal lobe to rear, always present. Often ``burning'' sensation of the brain. Sometimes pressure in face. -stiff neck, loud cracking. Pressure in neck -air hunger/and or difficulty breathing. Labored breathing, short breaths -profound fatigue -body wide burning pain. Mainly upper back and shoulder blade area. -insomnia -severe joint pain, mainly knees -tremors (occasionally) -shooting pains in left chest, left neck, and left temple -pain and stiffness in spine -racing heart, heart palps, heart pounding (all occasionally)
Posted by djf2005 (Member # 11449) on :
btw-
to all those who believe or suspect their current bart med is not as effective as levaquin, i would have to agree
recent research and more prominent llmds will tell you levaquin is the drug of choice for bartonella henslae. although, i am sure others can be equally as effective for different people as everyone is different.
humbly,
derek
Posted by lymeflox (Member # 10543) on :
cfj2005: Glad to know that you have improved so much while on levaquin. We need to hear success stories from time to time.
All these symptoms that you refer were your symptoms prior to levaquin or are your current symptoms? The improvement achieved with the levaquin means that some or all of those symptoms have subsided much or dissapeared althogether?
-Brain fog, slow mental processing of words, thoughts and ideas. -Visual brain fog, detachment from reality, blurred vision, often off balance and feel ``drunk'' -TMJ with jaw pain and pressure -Head pressure, changes from frontal lobe to rear, always present. Often ``burning'' sensation of the brain. Sometimes pressure in face. -stiff neck, loud cracking. Pressure in neck -air hunger/and or difficulty breathing. Labored breathing, short breaths -profound fatigue -body wide burning pain. Mainly upper back and shoulder blade area. -insomnia -severe joint pain, mainly knees -tremors (occasionally) -shooting pains in left chest, left neck, and left temple -pain and stiffness in spine -racing heart, heart palps, heart pounding (all occasionally)
In any case I hope all of them dissapear soon.
Posted by djf2005 (Member # 11449) on :
they are my current sx. ON levaquin BUT, they have all lessened, and some have not returned at all.
time will tell.
best of health to you.
humbly,
derek
Posted by lymeflox (Member # 10543) on :
One thing is very obvious: the clinical manifestations and treatments for lyme are difficult to comprehend even for the most literate doctors. Your case is very interesting and the information that you provide very helpful because all, not most, but ALL the symptoms that your list are included in the side effects group of levaquin toxicity (if you like you can check them at www.fluoroquinolones.org and www fqresearch.org). So, if levaquin cause those same symptoms that you have to healthy people (some times inmediatly, but in general after a delayed onset of weeks or months), but it also improves those symptoms on some of us (lyme sufferers), then we can conclude that we know far less than we previously thought. Perhaps an explanation could be that lyme patients metabolize levaquin in a different way to a healthy person, but it is only a conjecture, because I really do not have a clue for this paradoxical fact. That is why is so important that you keep us posted with your evolution and improvement, because your experience could show that levaquin is a true option for some cases. I wish you the best success and a total remission of your lyme.
Posted by djf2005 (Member # 11449) on :
lymeflox-
something else to consider.
the so called "possible side effects" listed for this drug, could very well be herx reactions the patients experienced during the clinical trials.
if you stop and think deep about it, there are a lot of gen pop usa that have dormnat tick borne diseases. i think the chance that those who expererience these so called "side effects" is not as likely as them actually experiencing some kind of die off.
notwithstanding, i do agree there are side effects to some drugs. but, when u stop and get into the exact "side effects" of certain drugs they often look just like what we all have come to known herxing.
increased inercranical pressure due to herxing has been misconstrued as PST on this board as well as many other things...
just something to keep in mind. everything is not as it seems.
humbly,
derek
Posted by lymeout (Member # 8045) on :
Derek, Funny you should mention the possibility of some side effects actually being herxes. I was just talking about this a few days ago. I think there is real merit to this.
Another question: do bart symptoms wax and wane while on treatment? My daughter is doing doxy IV right now after complications with levaquin and rifampin. She is doing 4 days on, 3 days off. She will get a lessening of some symptoms, then a resurgence. Also, new bart marks keep emerging. Has anyone else had this experience? There just doesn't seem to be any REAL improvement yet.
Posted by djf2005 (Member # 11449) on :
yeah, i agree. those are def herx sx, not reactions. wheh is the med system going to wake up???
anyway, yes, bart sx do flucuate on treatment, mine do.
the fact that shes on doxy tho is kinda weird you mention it.
i did 2 months of iv doxy BEFORE i got on levaquin.
once i started levaquin, thats when the breakthrough started.....
just something to think about. levaquin may target some stuff that doxy never will.
at least for me it did....
good luck with everything, let me know if i can be of further assistance.
humbly,
derek
Posted by cjnelson (Member # 12928) on :
Very interesting on potential herx vs reactions!!! We all know there is a massive under and mis diagnosis with this disease for sure....
Very interesting....
Posted by lymeout (Member # 8045) on :
It was Ketek that brought my daughter's bart to the forefront, I think. She developed some severe neuropathic sx when on it, causing us to stop it. Shortly after that, she got her first positive for bart. Several months later, while on no abx, she developed a mono-like illness (mono test negative), which I learned through some searching was most likely bartonella. I think it has been a big part of her ongoing illness.
Another thought: maybe the different meds are responding to different strains of bart.
Posted by CatWoman (Member # 10900) on :
Did you guys start on the full dose of bart treatment right away?
I'm scared the bartonella treatment is going to make my insomnia even worse. I am on my 4th week of IV rocephin and my sleep is bad but it's not as bad as it was as the first week on levaquin (i had to go off it due to vomiting).
I should start back on it soon. I am just so exhausted with the IV and diflucan and everything.
Posted by sixgoofykids (Member # 11141) on :
Yes, I started at the full dose.
I already had bad insomnia ... I take Ambien. I don't sleep at all without it right now.
Posted by djf2005 (Member # 11449) on :
yes i started @ 500 mg day... its been almost 2 months now and its becoming less effective i think??
onto the next bart med, perhaps rifampin.
what happens when we run out of abx?
my o my what is going on w the med system??
merry christmas to all!
humbly
derek
Posted by lymeout (Member # 8045) on :
Are you detoxing? That could be the reason you are feeling less effect. Also, some people say that they did not get noticable improvement until the 4 month mark.
Posted by sixgoofykids (Member # 11141) on :
Derek, why do you think it's becoming less effective? Is it because you are herxing less? Are you getting worse?
Posted by Beverly (Member # 1271) on :
up..
Posted by lymebytes (Member # 11830) on :
Gotta say I agree with Lymeflox, but if you study most of the abx we are taking, I swear there is danger in every abx to some degree, some worse than others with the exception of the old tried and true such as amoxicillin and doxy and that is about it.
The medications are scary..I was cleared of Bart by 1.5 years of using biaxin.
Now my ehrlichia is up to bat and very predominant with Lyme really kicking up..this co-infection for me seems to be the hardest to get rid of due to my intolerance of the abx that kill it.
I hope you continue to do well. Please keep us updated in the future.
Take care.
Posted by tailz (Member # 10014) on :
Maybe there is hope - great news!
When will Levaquin go generic? My insurance will only cover Cipro. I had severe head pains (sharp, shooting) and itchy, rashy knees on Cipro. Am I allergic? I'm afraid to take it ever again.
Posted by KauaiGoddess (Member # 11782) on :
Aloha~
to my knowledge there is generic Levaquin already available...
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