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» LymeNet Flash » Questions and Discussion » Medical Questions » I need to hear from one or two people who got over bart- Feeling desperate today

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Author Topic: I need to hear from one or two people who got over bart- Feeling desperate today
venus
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Hi all,

From my many posts, you can see I am in a panic.

I have used rifampin forever. Couldn't use levaquin. I started using bactrim. Think it is helping. I added ketek and now I am either having an allergic reaction or bart herx. I don't know which. Temproarily off abx.

I need to hear from one or two of you who got over bart - the confusion, anxiety, agitation, memory loss, panic attacks, twitching, tingling, derealization. I need to hear it can be done.

Thanks. Sorry to be so desperate. I am right now.

Kathy

--------------------
Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly.

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Haley
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Are you sure it is Bart that you are going after? Have you ever been treated for Babesia?

I think that some of the symptoms you mention could be Babs.

You may have both.

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venus
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I have every bart symptom in the book and pretty much no babs symptoms. With that said, as long as I can stay on the protocol (if this isn't an allergic reaction I am having)Bactrim and Ketek hit all of them. I am also taking arteminsin.

--------------------
Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly.

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Jane2904
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Venus,

I am so sorry you feel like this.

Our daughter has Bart also. She just finished 10 month of treatment on Rifampin and it helped with many symptoms.

Her Dr. stopped the Rifampin and she started Cipro, only started slow, low dose. Now I am very discouraged as one month on low dose and things are worse.

Her anxiety has increased and other weird feelings etc. Things were better( Before Cipro) and now per her Dr we had to stop. Have to call back in about a week.

I do not mean to tell you our problems, but like you, wonder when it will get better or if this is a strong herx.

Just wanted you to know you are not alone. Sending hugs to you [Smile] Hope you feel better, Jane

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sixgoofykids
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It can be done. I beat Lyme, bart, and babs!!

--------------------
sixgoofykids.blogspot.com

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venus
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Thanks Jane and Six. This is just so tough. I don't know what I will do if I can't take the bactrim. Will add it back in slowly.

Who can ever tell herx, allergy, side effect.

The only way to get well from this thing is to believe one can. I have tried for a long time to believe. Setbacks like this make me think that it is impossible without lots of money and IV. I don't have either.

--------------------
Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly.

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Jane2904
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You will get there Venus.

I thought I would never see my daughter well again. The Rifampin helped.

You will get there, I just wish there was a shorter road for everyone!!

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lymeinhell
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I did it. Got rid of Bart with Rifampin and Flagyl and have been off abx more than 5 years now.

Ketek - TONS of listed side effects so don't just chalk everything up to Lyme & co's... I personally know non-lymies who've gotten really struck down by Ketek.

http://www.rxlist.com/ketek-drug-patient.htm

--------------------
Julie
_ _ ___ _ _
lymeinhell

Blessed are those who expect nothing, for they shall not be disappointed.

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beths
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I think I beat bart-I took bactrim/zith for a year. I had horrible anxiety and agitation..
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venus
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Thanks to all of you. I need to hear these things. I have been on some sort of bart treatment since Sept 07. Still fighting.

Agitation and anxiety are much better. Still totally confused and don't know what day it is.

When I see my LLMD might ask about switching from ketek to biaxin.

Hugs. Thanks.
kathy

--------------------
Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly.

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Tracy9
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Just started Rifampin a month ago and never had any of the Bart symptoms except burning feet....but within days everything you listed as well as excruciating pain came out in full force, and more.

I have never known hell like Bart Hell. I went through the worst month in my almost six years of treatment. I took Zith and Bactrim for a year and it did not touch my Bart. In fact my titers went up.

Now I am on only Rifampin and I thought I was going to die. The excruciating pain and everything else you listed has died down, and I can only assume Bart is finally getting a kick in the teeth. I hope this is my first step to recovery from it.

My fatigue has improved; it has been incapaciating for years. It is better though returning a bit now.

I am hopeful with Bart treatment finally working, I can see some improvement in my quality of life.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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venus
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Tracy

Good luck. It is truly terrible.

Kathy

--------------------
Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly.

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lyme in Putnam
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Hi Venus
You've been there for me and I hate to say time, but that's what I've been told over again. Yesterday and today were almost. Normal,but it's been a while for normal. I know how bad it can get. I'm there with you and there are brutal days with this. Minute at a time. Write whenever you want - I know every symptom you put down and feel them all. Tomorrow will be better. I take anti-anxiety when I have to. I do what I have to get through,like i'm sure everyone else here has to with this. Tomorrow will be better.

--------------------
He took u to it, He'll you through

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nefferdun
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Hi Venus, wish I was the person to tell you I am well but I can only sympathize with you because I know what you are going through. I was feeling much better but have taken a downward bit of a crash - not sure why, except I had to quit the bactrim, started plaquenil and maybe it is herx. Who knows.

I hope you can continue with bactrim if it is working for you. It is so tough getting through the herxing when a drug does work.

Problem is, it is so easy to relapse with bart and it happens so quickly. I don't know if I am herxing, relapsing or sick with something completely unrelated, or having side effects. I sure do have a headache and I have been exhausted for days. The depression is also setting back in and I do not want to do anything.

I believe I read that ketek drives the bart (out of what I don't know. . ) and maybe that is why you feel so horrible. There is just such a huge die off.

I am so out of it right now.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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CD57
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I don't have anything to add that hasn't been said but I find it interesting that there are two themes that emerge when treating bart: herxing like crazy and just feeling better.

My LLMD told me that there really wasn't herxing with bart. A friend who used to see dr B when he was practicing said that he told her the same thing.

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Hoosiers51
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Hey!

I'm gonna try to keep this short because I'm really tired.

I think you mentioned on another post inflammed eyes and mouth?

When I had my big Bart (I think, no way to prove) herx on Bactrim DS, the first night, the whites of my eyes were pink, and they were also looking like they were swollen shut, or swollen "barely open." That only lasted for about 24 hours.

Some people told me they thought that was an allergic reaction to the Bactrim, but I knew it was a herx, so I stayed on it. I knew it was a herx because I had all of my classic herxing symptoms, like crying and bad headaches, and skin hot to touch.

Depending on how puffy/inflammed your eyes and mouth are, it could be an allergy. But I just wanted to let you know that I did get eyes swollen from a Bactrim Bart herx.

Hope that helps! Good luck, but of course don't risk anything if you are in doubt. It is a personal judgment call.

Sorry I posted this on the wrong thread...just didn't feel like searching for the other one.

But regarding getting over Bart, I don't know if I'm totally over it, but my symptoms are much much much better, so I think there is hope for sure. Good luck!

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Stefan
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please help

i have bart and treated it with different combos for a long time.

I never had stretch mark rashes before.

Today was really bad rashes. (Stretch mark)

When I took antihistamines it got better.

Do bart rashes respond to antihistamines?

and can they show up for only 1 hour ??????

One more, similar, question. Can they appear for the first time with treatment?

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lymebytes
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Beat Bart twice both times on Biaxin. First from a tick bite. Second infection was bitten by a cat and I got it again. It took almost a year of Biaxin the first time and the second go-round a year and half of Biaxin.

The second round of treatment was insane, nearly drove me crazy, I was sure I was headed for the nut-house through treatment, but I made it. YES, there is herxing w/Bart treatment, I am here to tell you - for certain!

Your symptoms you mention, could be bart related but some of them remind me of Babesia. My LLMd said they are hard to tell apart sometimes.

Stefan - your rashes sound allergy related. Just my opinion. If they come and go or start w/new treatment - that sounds like allergy to the drug especially if antihistamines help, antihistamines help w/allergic reactions. I never had anything like that w/Bart either time.

--------------------
www.truthaboutlymedisease.com

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venus
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Thanks everyone for the support. We shall see what my LLMD has to say on Friday. I hope to restart the bactrim. It was helping. I didn't develop the rash until the ketek. That might be the question.

I tried before to pair it with biaxin. Perhaps I can do that this time.

Thanks again. It just feels so hopeless sometime.

Kathy

--------------------
Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly.

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lyme in Putnam
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I spoke too soon. One and a half decent days, guess I have to pay the penalty for making a plan with my life. As you can see, the "normalish" days came and went. The only thing you can depend on with this stuff is that you can't say from one minute to the next how you're going to feel. Might have to take a spinal to rule out ms, have to see neurologist Tue. I know its not ms, all know what the culprit is. Have a good night and heres to a brighter tomorrow. (or trying to). Feel better.

--------------------
He took u to it, He'll you through

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lymers
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Yes, beat bart with rifampin, bactrim, zithromax and some herbal tinctures (of course, not all at the same time, but over the course of about 1 year).

Lymers

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pamoisondelune
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If you're desperate and have problems with drugs, you might be open to thinking of trying rife.

I have a GB-4000 rife machine. i rife every day on Bart frequencies, 1 minute each: (these numbers refer to Hertzes, ie, very low level radio waves):


Bartonella_henslae - 364, 379, 645, 654, 786, 840, 842, 844, 846, 848, 850, 857, 967, 6878, 634, 696, 716, 1518

I think it helps; but my symptoms were almost invisible to start with;, i was never sure if i really had it; but since these frequencies seem to make me feel a bit better, i think i do have it mostly asymptomatically.

DesBio homeopathics also has a Bartonella series, which i've heard that some people have good results with; i have no personal experience with them.

----Polly Polygonum
-----or Nilufar Knotweed

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Stefan
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Do bart rashes respond to antihistamines?

When I took antihistamines it got better.

and can they show up for only 1 hour ??????

One more, similar, question. Can they appear for the first time with treatment?

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venus
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Sorry Stefan, I don't know the answer. I don't even know if mine are bart rashes. If they are, they have not responded to antihistimines at all and not gone away in days.

--------------------
Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly.

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