I've been feeling badly for about 10 days with a return of many symptoms I haven't had in months. I was hoping it was a herx. LLMD thinks it's a baronella relapse.
Back to rifampin I go. I'll have to wait again to try for a baby until this relapse is dealt with. UGGGG!!!
Hopefully, this won't last long. Has anyone else here dealt with a bartonella relapse? How long did it take for you to recover? What meds did you use?
Lymers
Posted by Deb133 (Member # 18544) on :
My daughter is trying Zhang's HH capsules. Her
LLMD thinks she is still dealing with Bartonella.
She did Rifampin for a while back in the Spring.
Good luck!
Deb G
Posted by Stacyb (Member # 13084) on :
I had a relapse with Rifampin too (after about 2 weeks off). It took me a while to get back to where I was (3-4 months) but I felt even better the 2nd round of tx for Bart. I think it all depends on your load and make sure you treat it long enough too. Some say it can take several times to treat it. Both times I took Rifampin with Zithro. (and several other meds.) and treated Babs and Lyme at the same time too.
Posted by Sarah182 (Member # 15774) on :
What kind of symptoms did you get back?
I've been off bart treatment for a few months now and am wondering about some symptoms I'm having.
My LLMD didn't seem too worried but I am!
Posted by aMomWithHope (Member # 19255) on :
How long were you treated and how long were you off? Had you stopped all abx or just the Rifampin?
I hope you recover quickly!
Posted by jenny76 (Member # 18205) on :
I am curious to know what types of symptoms you are experiencing. I wonder about this too.
Posted by blinkie (Member # 14470) on :
I relapsed too, after a few weeks. Some symptoms came back worse. Mostly lung and heart symptoms.
I'm on a new protocol now. I'll post a new thread if it seems to work, I don't want to share it now since it could be for nothing.
Posted by btmb03 (Member # 18394) on :
"Lung and heart symptoms"? I have both. Inquiring minds want to know more details..pls and thank you!
Posted by Lymeorsomething (Member # 16359) on :
Heart symptoms could easily be lyme flares/relapse as well.
Posted by zil (Member # 12048) on :
What symptoms are you having for bart? Lyme? Babesia?
I am currently having a lot of joint stiffness and don't know what to blame it on.
Posted by Stacyb (Member # 13084) on :
For me my relapse was just from stopping the Rifampin (although I did switch from Mepron to Malarone too). From my symptoms that came back I think it was Bart. I had heart pain and burning and chest tightness as well as air hunger or shallow breathing. Also the anxiety came back as well as neuro stuff and a feeling of being ill. The neck stiffness increased, the tingling came back in my hands and feet some what.
I was on Rifampin the first time for 8 months with Zith and other meds. for Babs ect... I relapsed with in 2-3 weeks. I went back on Rifampin and Mepron again (yes I do know about Rifampin's interaction with Mepron). It took about 3-4 months to get back to where I was. But I did have almost instant relief from the heart pain and chest tightness. I have been treating for 8 months again this time and switching to Factive pulsed to try and make sure the Bart is gone this time.
Posted by aMomWithHope (Member # 19255) on :
Trying to piece symptoms together with co-infections........seems to me that the air hunger would be from a Babs relapse and anxiety and neuro from Bart and/or Lyme.
Did you stop all meds for all infections at the same time?
Rifampin seems to be more targeted to Bart and Mepron for Babs, so if you restarted both at the same time and got relief, I wonder which came back--both?
Lately I'm reading more and more posts stating that they treated for Bart for 8 months, stopped, and everything came back. I wonder if treating closer to a full year would be better--ugh!
My child has been treating Lyme for close to 8 months and Bart for close to 6--I guess we still have a long way to go. She is doing great by the way with many of her symptoms completely abated; however, the ongoing headache and flu-like body aches still continue with no diminished intensity--major celebrations will occur when the headache finally disappears!
Good luck with your treatment. Everything I've read so far seems to state that the treatment for relapses are shorter and less intense, herxwise, so I hope you see some relief and permanent abatement of symptoms soon!
Happy Thanksgiving!
Posted by Stacyb (Member # 13084) on :
aMomWithHope,
I would think that air hunger was from Babs too but I think mine was from Bart. Mine is a bit different then what some would describe as classic air hunger.
When I first treated for Bart, I was NOT on Mepron. My Bart symptoms (the ones above) all went away with treatment. I did not treat Babs until about 6 months into the first round of Rifampin. My Babs symptoms were dizzyness, cold extremeties and night sweats and with tx they got better. Then when I went off the Rifampin and Mepron I was switched to Malarone so that did address the Babs some what but I was not on any Bart tx. The symptonms came back within 2-3 weeks.
When I re-treated again I went on Rifampin first and the symptoms all lessen rather quickly although it did take time to get back to where I was. I then added back the Mepron too.
I agree that it may take multiple times to treat and may need an extended amount of time as well. I did herx much less the 2nd time I treated Bart.
My son also took Rifampin and Zith for Bart. and he has done great! His tx was for 8 months too and so far he is not showing signs of relapse.
Good Luck with your daughter too. It is so nice to see them get well.
HAPPY THANKSGIVING TOO!!!!
Posted by lymers (Member # 21512) on :
Thank you so much for your replies everyone. I treated bart for about a year. I treated with rifampin, zithromax, and BLT.
I am still on antibiotics, but just ones that treat lyme right now (zithromax and Moxatag ER). Although, I guess zithromax helps with bart a bit from what I understand.
I actually feel really good right now. My symptoms just seem to really intensify the week before my period starts.
The rest of the month, I seem fine (virtually symptom-free).
I don't know what to think. If it was a replapse would it be more likely that my symptoms would be with me all the time instead of just one week out of the month?
Lymers
Posted by CD57 (Member # 11749) on :
What are your bart symptoms?
Mine (or the ones I associate with bart) come back very quickly after one week: cognitive problems with depersonalization and unbearable anxiety and depression. I treated bart with rifampin + doxy/mino for 9 months and then Levaquin/mino for 4 months. Have never been able to get it into remission.
Posted by nefferdun (Member # 20157) on :
Levaquin quickly knocked mine down but in 5 weeks left me with bad tendonitis. I used Zhang's herbs for 8 months but was relapsing the last three. I didn't know what was happening - thought it was a herx. I get bad headaches, insomnia, need to urinate a lot, my eyes are dry and irritated and my shins hurt. I also get depressed - more like a numbness to life. I have cognitive issues but that could be lyme related. I feel disconnected. I am on rifampin and zithro now and feeling anxiety and often despair. This is a cruel disease.
Posted by CD57 (Member # 11749) on :
Does ANYTHING get rid of it>
Posted by carly (Member # 14810) on :
Stacy,
Can you describe your air hunger and why you think it's due to bart, not babs.
I ask because I am doubting my air hunger is from babs.
I'm thinking it my be panic or anxiety related, and from bart.
Blinkie,
Your lung and heart symptoms - can you describe them?
Again, I'm curious if my lung/breathing symptoms might be from bart.
Posted by djf2005 (Member # 11449) on :
I am approaching it with Nutramedix products currently and hoping it puts a dent in it.
Nefferdun's description of symptoms fit mine, although I have more.
I am hoping the new HH drops will help, along w/ everything else I am doing.
I got it into remission the 1st time w/ rifampin/biaxin/roxy/bicillin but am hesitant to go back to so many abx until I can adaquately detox.
I am never really sure how much of any of out symptoms are disease related, toxin related, or immune (AI) response related.
Hang in there everyone. We will return to humans again.
Best
Derek
Ps- I have serious lung, breathing, chest pains and they don't think I have babesia, at least not that badly. Who knows, I think I do, just not sure which infection is dominant. I think with the more sick ones, having multiple infections is a given, unfortunately.
Posted by Stacyb (Member # 13084) on :
Carly,
My air hunger was a tight chest and it came with a lot of anxiety too and fast heartbeat. I was able to take in air unlike most who describe air hunger from Babs as a feeling of hyperventilating. I did get a feeling of not getting a deep enough or satisfying breath in but it felt like it was from the tightness in my chest ---if that makes sense.
It may have been Babs but according to how I posted on my treatment those symptoms went away with Bart tx first. I also had bad chest pain which I know was from Bart. I had neuro symptoms and a real stiff neck that almost felt seizure like. Sore calves too. As soon as I started back on a Bart tx I got relief with in days. It took several months to get back to where I was though.
Posted by blinkie (Member # 14470) on :
My bart symptoms all went away with rifampin and septra. They came back after a few weeks of stopping.
The heart symptoms were: feeling like my heart was swollen and congested wheezing when breathing (in the heart and lungs) palpitations
Lung symptoms can't get a deep breathe can't hold my breathe congestion severe chest pressure
I can now breathe freely and deeply again after restarting a new treatment.
Bartonella is known for causing endocarditis and valve damage to the heart.
Due to ongoing shortness of breathe, I'm going to see a good cardiologist later this month. Hoping that not too much damage has been done.
Posted by djf2005 (Member # 11449) on :
Also, I will report my results on the Nutrmaedix HH when I begin using it, it will be here next week.
I'd suggest some of you keeping that as an option (cd, maybe it would help you, who knows?)
Derek
Posted by carly (Member # 14810) on :
I recently began taking Zhang's HH capsules. (I tried rifampin, but couldn't take it)
I've gained dramatic improvement of what are clearly bart symptoms, and one or two I didn't realize were bart, but now I think they are, based on the response.
It's the first "dramatic" improvement of my treatment (since Jan.)
Stacy & Blinkie- thanks for being so specific.
I'm still not really sure about my air hunger, though. I tend to think babs., but treatment hasn't really affected it.
It's best described as not getting a full or satisfying breath (I thought that was classic babs), but also it's like I'm trying to breathe the air of a different planet that has the wrong atmosphere.
This can get worse in response to anxiety, which is most certainly from bart.
I'm treating babs and bart at the same time, now.
Posted by Stacyb (Member # 13084) on :
Carly,
I am glad that you are responding to the HH caps. How many are you taking as I hear it can take up to 15/day? Is it the HH2 caps as I did hear that Zhang had a stronger one out now?
I am glad that you are treating but Bart and Babs. I did the same thing too and I think it helps to hit them both at the same time.
Let us know how the HH caps work and I will post when I know enough about the Factive results too.
Posted by carly (Member # 14810) on :
I'm just taking 1 capsule 3x/day, the regular strength ones.
That's what I started with less than a month ago. No probs, noticeable results.
I continue to be amazed at how we each respond differently to these meds/herbs.
I am also taking mepron/zith.
I look forward to hearing the reports from each of you!
Posted by kadee (Member # 21199) on :
Carly, this is interesting.
How long are you taking zith./mepron? Could the dramatic improvement derive from these too - in combination with HH?
Can't wait to start with HH2, which I ordered yesterday from Switzerland.
Btw, my airhunger showsup unregularly. It feels like I'm not able to breathe even though I CAN breathe. Like a big rock on my chest. Weird.
Posted by Stacyb (Member # 13084) on :
Kadee,
Is there a on line sight to order the HH2 caps or anyway to get them here?
Posted by kadee (Member # 21199) on :
No, the pharmacy in Switzerland doesn't have a hompage (as far as I know) I could PN you their email.
In USA you get them (much cheaper than in Europe of course) :
I would like to try the HH2 -- Derek what are theese -- drops?
I have about $300 worth of regular HH capsules in my cupboard -- never took because seemed like such a pain in the &^%. Would love it if there were drops.
Actually I dont know how much of symptoms can be ascribed to anything in particular. My new LLMD said quite a lot of my problem is hyperactive immune system going nuts from the treatment I just bombed my system with. I agree but know that bart or whatever it is is still there. And always has been. He is convinced that he can get bartonella to go away.
Posted by kadee (Member # 21199) on :
Zhang says:
quote:HH 2 Capsule is a double strength version of HH Capsule
Posted by djf2005 (Member # 11449) on :
CD-
Yes, the Nurtramedix HH are drops, as are all NM tinctures.
If your immune system is going nuts, perhaps consider LDN. It has helped calm mine, it was going off the wall.
Also, could you PM me your new Dr? I am interested in what he is doing differently from your old one.
HH2 seems interesting, yet what makes it "twice as strong" as the former compound?
The only difference seems to be 1 new HH = 3 old caps, that's really it.
Thanks
Derek
[ 12-05-2009, 10:01 AM: Message edited by: djf2005 ]
Posted by Stacyb (Member # 13084) on :
Kadee,
Thanks for the info. My LLMD sells me the HH caps and I ask for the HH2 but have not heard back from him on it yet. I cannot find a place to order it here from either.
Posted by kadee (Member # 21199) on :
Kadee, I've been taking mepron/zith for 4-5 mos now. I started the HH capsules about 3 wks ago.
Recent dramatic progress came after a mad herx just after starting HH.
My air hunger feels that way too, like something's keeping me from breathing properly. It happens pretty regularly, though.
BTW: I've had a pulmonary function test (yrs ago) which was normal.
Derek, Thanks for the link/info. I had the same quesions and concerns and needed clarification.
CD, you never took the regular HH b/c too much of a pain in the butt?
I have to set the alarm on my phone. I have to do that for other things, too (probiotic, questran). If not, I won't remeber to take them.
Also, there's an aftertaste. I've gotten used to that though.
I know we're all different, but it's a wonder drug for me!
Posted by nefferdun (Member # 20157) on :
I took the HH capsules for 8 months. Before the HH-2 came out, which is double the strength, I took 3 HH capsules 4 times a day. When the HH-2 came out I took 10 a day but I relapsed. Now I am on reifampin/zithro but I do not feel I am getting any better. If you take the HH and especially the new version, you should eat something after taking it. I would burp it up into my mouth and the taste was more horrible than you can imagine, but eating AFTER I took it eliminated that problem. It is very expensive to use these herbs. I spent 7K on LLMD, travel to the city where he was and drugs and herbs this year and here I am exactly where I was a year ago. No wonder I am depressed.
[ 12-05-2009, 10:30 AM: Message edited by: Anna Lee ]
Posted by Faith9597 (Member # 23183) on :
-------------------------------------------------------------------------------- HH 2 Capsule is a double strength version of HH Capsule
20-25 a day recommendation does NOT sound right at all. 15 a day sounds high also.
We save money now that it is made twice the strength. Max we ever took was 6 a day but we all take different dose and have seen improvement along with the rest of our protocal.
Posted by Faith9597 (Member # 23183) on :
Correction 6 a day of the HH which was cut back to 3 a day once we switched to HH2. Some may be recommended a higher dose but I can't imagine 20-25 is anywhere near correct. I have never seen a recommendation of that amount.
Posted by Elaine G (Member # 20735) on :
Nefferdun and twingirl
Can you show me, in writing, where this doctor recommends these high amount? I would like to read about it.
Posted by tfrank (Member # 22943) on :
Okay, been following this thread and just have to chime in.
I get that "unsupported negative speculation" can't be tolerated (though our definitions of "unsupported" are probably very different).
What I don't understand is why no one ever says sock puppets and marketing won't be tolerated. Not in the context of accusing anyone of having created a sock puppet or having marketed, but simply as a reminder to whomever might be considering either that these behaviors are unacceptable.
Or is it somehow not unacceptable? It really seems like the lack of censure for it condones it, and that is reprehensible.
[ 12-05-2009, 04:23 PM: Message edited by: Anna Lee ]
Posted by Stacyb (Member # 13084) on :
Faith,
Where did you get the HH2 caps from ? Same place as where Kadee get hers?
Thanks Kadee!
Posted by Treelady (Member # 23506) on :
HH is the only thing that has helped my bartonella but it is definately dosed according to individuals. Always take with food and work up to the higher dosages. I have started with 3 a day and then worked up to 12. Pay attention to your body....if you feel really zapped with 3, stay with that until you arent' feeling zapped and then up it until you feel zapped again. This is just good pharmacology. Doctors don't prescribe supplements so you are on your own with this
[ 12-06-2009, 07:53 PM: Message edited by: Treelady ]
Posted by Anna Lee (Member # 22992) on :
Please review the rules. If members would stop breaking them, posts would remain intact. Thank you for understanding.
Posted by blinkie (Member # 14470) on :
Can we please keep this threat abotu the topic at hand? Thank you.
My breathing symptoms are exactly what you describe Carly. Not being able to get a deep breathe.
My LLMD recently concluded I have the dreaded BLO which has no known treatment at the moment, although levaquin might work. I have c diff and levaquin might not be an option for me.
We are currently trying another combo which has really improved the symptoms. I'll post if it works. So far, LLMD doesn;t think it's working. =(
Posted by Faith9597 (Member # 23183) on :
Yes, I order from the same place as Kadee. Our protocal is working, so I am not willing to try a different option.
It would be appriciated if the insults would stop toward others and/or their physicians.
Sticking with the topic is a great plan.
We have lab work completed that indicates if effective. We also started out slowly and work our way up to what is tolerated but again it is monitered by blood work.
At the high dose how do you know if relapse or die off. Did you have tests to indicate? I would wonder if it was actuall die off?
Posted by carly (Member # 14810) on :
[QUOTE] Can we please keep this threat abotu the topic at hand? Thank you. [QUOTE]
I second that!
Blinkie, I'm sorry to hear about "the dreaded BLO" . I hope you can get things under control.
This sheds some light on things for me regarding my situation, possibly. I wonder if my llmd will come to the same conclusion some day.
How long have you been treating? I took my 1st dose of doxy on Jan 21st. 2009. I've definitely made great progress, but I am certainly not well.
Good luck with the C-dif. Keep us posted!
Posted by Stacyb (Member # 13084) on :
Faith,
Thanks so much!
Posted by lymers (Member # 21512) on :
Well, everyone. I started the rifampin for my possible bart relapse. The first day I took it, I felt badly (herx-like) within five hours and didn't feel well the whole evening. However, I literally felt like my symptoms were almost completely abated by the next morning. I've been on the rifampin for a week now, and my symptoms have not returned.
Do symptoms from bart disappear this quickly when you've already treated it extensively? How long will I need to treat it before I can go off of bart meds and not relapse again? Any ideas?
Lymers
Posted by CD57 (Member # 11749) on :
are you saying the HH capsules are a waste of money and did not work?
Posted by Stacyb (Member # 13084) on :
Lymers,
I got almost immediate relief when re-starting Rifampin. I cannot say how long to re-treat but IMO I would make sure you are symptom free for months like Dr B guidelines recomend before you stop treating.
Posted by lymers (Member # 21512) on :
Hi Stacyb,
Do you mean like the 2-3 months symptom-free before stopping treatment?
Lymers
Posted by blinkie (Member # 14470) on :
Me too...got improvement quickly once starting back on meds. Within 2 weeks, many bart symptoms were gone.
I took bactrim with rifampin and I was 100%. For three months I lived like I had never been sick. I thought I was done with all this. But, had to stop due to ankle pain and it all came back.
I really think many of us are dealing with the bartonella like organism. I just hope someone finds a treatment for it soon.
BTW- has anyone here been tested and know what strain of bart you supposidly have? I heard that BLO cross reacts with some strains.
Posted by aMomWithHope (Member # 19255) on :
My daughter supposedly has Bartonella Hen.
Posted by Stacyb (Member # 13084) on :
Lymers,
I do think 2-3 months symptom free before stopping abx tx IMO.
Blinkie, Why did you have to stop the Rifampin and Bactrim due to ankle pain?
Posted by carly (Member # 14810) on :
quote:
Lymers,
I do think 2-3 months symptom free before stopping abx tx IMO.
quote:
I'd think at least that long, too. Good to hear it's working for you!
(If many of us are dealing with BLO, that complicates things, and I don't know what that means for tx.)
Posted by lpkayak (Member # 5230) on :
i wasn't able to read all
i am also dealing with bart relapse
and resistance
it is much worse this time than at first
llmd switched me tobuhner herbs cuz rifampin wasn't working second ime
my lumps aare so bad i feel lik i am lying on marbles and golf balls
Posted by blinkie (Member # 14470) on :
stacyb-
For some reason I had ankle pain and stiffness while taking bactrim. Not sure why, neither is my LLMD. It got progressively worse until I almost could not walk so I stopped it.
All better now since I've been on my new treatment so not to osure if it was bugs or side effects.
Posted by Stacyb (Member # 13084) on :
Blinkie,
Ok gotcha on the Bactrim. Almost sounds like the issues that can happen on the Floroquins. I am allergic to Bactrim and even tried it for a challenge test at the allergist to see if I could use that med again. No luck, as a few hours later I got violently ill !!!! Either that or it was the biggest herxed I have ever had from any abx. I have taken a lot and been very aggressive with my tx so that was a shocker. I did get all red (felt like extreme sunburn) with in 3 days of taking it so that one is out for me.
Ok sorry to get off the topic
Posted by mrpotto (Member # 15123) on :
I guess I relapse but I truly believe I never have gotten rid of my Bart. I'm going through a *relapse* right now. I changed LLMDs (seeing Dr. H in NY) and he has me on Cowden, chelation for mercury/lead and low dose naltrexone. Like CD57's case, he thinks my immune system is compromised by 6+ years of heavy abx treatment so he has backed off an intense abx regiment for now He did prescribe me Doxy.
I just went three weeks off abx - I often test myself to see how long I can go (45 days was my high). Yesterday I felt I had to reach into the cabinet for the Doxy. The symptoms started to build to a crescendo:
* Head and face tingling (major creepy crawlies) and head pressure * Waves of light anxiety starting to build * Feelings of being detached * Insomnia
Generally it will take me a few days to a week back on abx to get back to 75% (light head and facial tingling). I never seem to be able to rid myself of these symptoms. I've said this before, if I knew that the light head and face tingling wouldn't get worse, I could easily live with those symptoms. It's just that I know off abx for any length of time will not be a good option. I half wanted to just let it go and see just how bad it would get but the thought of dealing with major tick-borne illness related panic and anxiety scares me off.
So abx keep me at 75%- 80% but I never improve beyond that. I have herxed and herxed bad but I never come out the other side feeling better. In another thread someone mentioned a similar occurrence and it got me thinking that my body isn't clearing the die off properly and it just adds to the mess.
Good luck everyone and if anyone sees anything in what I described that could be helpful let me know.
![[Frown]](frown.gif)
. I hope you can get things under control.