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» LymeNet Flash » Questions and Discussion » Medical Questions » Bartonella...so discouraged

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Author Topic: Bartonella...so discouraged
nikkabelle
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Does anybody have any words of encouragement?

I just started treating for Bart exactly one month ago (not super agressive yet though).

I guess I was secretly hoping for immediate improvement or symptoms to disappear already. I haven't really noticed a change yet and I'm so discouraged.

My LLMD feels strongly that I have Bart and I thought it was responsible for many of my symptoms.

I just want to cry. Am I just being too impatient?

--------------------
[Smile]

Posts: 81 | From Minnesota | Registered: Apr 2014  |  IP: Logged | Report this post to a Moderator
surprise
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Yes, and that's a sign of Bart. (lol, but really).

Hang in there, keep trucking, it takes a good while.

Meantime work on other things to help, like your diet, low impact exercise, maybe add enzymes, etc.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

Posts: 2518 | From USA | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
nikkabelle
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Thanks, Surprise.

Haha, what is a sign of Bart? Being impatient or wanting to cry? I really envisioned symptoms disappearing by now [Frown]

I also literally cannot sleep anymore. Ever since I started the meds, I have the worst insomnia. Maybe because I am anxious and have so much on my mind.

My LLMD told me I really need to give the meds longer to see if they work before we switch to something else. I just don't know how long it's supposed to take.

--------------------
[Smile]

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surprise
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Yes, insomnia, anxiety, impatience.

Work on other things to make you feel better while waiting, like I mentioned, and detox.

Try to get your mind positive.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

Posts: 2518 | From USA | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
nikkabelle
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Thank you, I will work on that.

Can it take people months and months for Bart symptoms to go away?

--------------------
[Smile]

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TF
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Yes.
Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
TF
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From the Burrascano Guidelines:

"The drug of choice to treat BLO [bartonella like organism] is levofloxacin. Levofloxacin is usually never used for Lyme or Babesia, so many patients who have tick-borne diseases, and who have been treated for them but remain ill, may in fact be infected with BLO. Treatment consist of 500 mg daily (may be adjusted based on body weight) for at least one month. Treat for three months or longer in the more ill patient. It has been suggested that levofloxacin may be more effective in treating this infection if a proton pump inhibitor is added in standard doses.. . .Alternatives to levofloxacin include rifampin, gentamicin and possibly streptomycin." (pages 24-25)

http://www.lymenet.org/BurrGuide200810.pdf

Of course, if you are taking a medication that does little to kill bartonella or if your medication is too low of a dose, you could wait a long time to see results. So, be sure that your bart treatment lines up with Burrascano.

Here is another website that discusses proper bart treatment:

http://www.lymebook.com/antibiotic-treatment-for-babesia-bartonella-ehrlichia-co-infections

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canefan17
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Meds can irritate the nervous system further (whether from the bacterial die off toxins or from the meds themself) & that will absolutely render you sleepless. I've gone days without sleep.

Sometimes I have to back off high doses and find what works for me. Sleep is so important and you wouldn't want to take something that revs up the CNS on a daily basis.

For me it was high dose flagyl, IV rocephin, IV doxy, etc. Again I could take those but in smaller doses like flagyl 250mg bid, rocephin 1g bid, & doxy 100mg bid.

Some people use even smaller doses.

Bart & insomnia are the worst thing I've experienced in my life. Good luck. Load up on ginger tea & adrenal herbs! [Smile]

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Lymetoo
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Patience is something that we have to focus on. It's a tough road.

[group hug]

--------------------
--Lymetutu--
Opinions, not medical advice!

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nikkabelle
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Thanks everyone. Patience is my worst...

--------------------
[Smile]

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nikkabelle
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I met somebody with similar Bart symptoms as me, and she said within days of starting her meds some of her symptoms went away.

I got that in my head and now I've been so devastated it hasn't happened to me.

My llmd told me I shouldn't expect that and that every person responds so differently to treatment...but now I'm just waiting and waiting and really getting scared [Frown]

--------------------
[Smile]

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Lymetoo
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Sad to say, but I would think she was a rare case.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Judie
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It's good that you're keeping track of your symptoms.

If you're taking a fluoroquinolone (levaquin, cipro, avelox, etc....), they cause horrible, persistent insomnia. They mess up your gaba receptors.

I was been given levaquin/levofloxacin years before I had Lyme and co-infections. I didn't sleep for a long time after stopping the levaquin because of the persistence. It was not a herx reaction.

Levofloxacin-induced acute anxiety and insomnia
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3410005/

Letter by a doctor who was floxed to explain the chemical process in the body
https://onedrive.live.com/view.aspx?cid=B0735325185D9D26&resid=B0735325185D9D26%21149&app=Word

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Lymetoo
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I'm glad you posted this, Judie. It is good to warn anyone on these drugs.

--------------------
--Lymetutu--
Opinions, not medical advice!

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didogs
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Bartonella is the worst. And for me, treatment was even harder.

I too had horrible anxiety and insomnia. I started to feel relief after four months of rifampin and mino. I then switched to A-bart due to liver issues and my symptoms have been manageable since then.

You will get there and I know it is so hard to be patient. Hang in there-you will see better days.

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nikkabelle
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Thanks for everybody's support [Smile]

Didogs-- what relief did you feel after 4 months? Less anxiety and insomnia, or other Bart improvements?

--------------------
[Smile]

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oceangirlSA
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The first couple of months on Bart treatment can be rough. Some of my symptoms went crazy in the first month and I was very tearful.

I started noticing symptom improvement in the second month. My headaches got less severe, my teeth pain started reducing and the slurring of my speech started improving.

I am on doxycycline, biaxin and rifampin and this combination is making a difference. Its been 2.5 months on Bart treatment for me, and my headaches are less frequent, the slurring of my speech has decreased dramatically and so has the teeth pain.

I am also noticing some improvement in my muscle pain - its still very much there, but less intense.

I have had Bart for a very long time so I am expecting that my treatment will last a while, but I am definitely improving.

Hang in there and I hope you feel better soon!

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nikkabelle
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Thank you!

I haven't really had a major herx yet either (insomnia and anxiety). I have some anxiety anyways so it's hard to know if that's just normal. And then hard to know if the insomnia is a herx or reaction to the meds.

It's been a month of non-aggressive meds. My llmd wants to slowly increase. I guess that could be contributing to why no symptoms have improved yet (and also the fact that I'm probably being unrealistic in thinking if have major improvement this early on)! Grrrr!

--------------------
[Smile]

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Catgirl
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Try to be more patient. One month of treatment is unrealistic for anything here.

Not being able to sleep could also be from adrenals being out of whack. I always had insomnia before the full moon (parasites), but now that I've gotten my adrenals under control, as well as some therapy, insomnia has lifted, even though I still have bart.

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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Bitten in Bergen
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Great meds for bart (including mood issues!!) are:

One-hour before meals/meds: parsley drops and detox drops and fibrin agents (lumbrokinase or nattokinase)

Bart killers (may be prescribed before meals or after meals) include Beyond Balance Bar-2 - amazing stuff.

It IS possible to get through this - wouldn't have believed it if I hadn't seen it for myself. I had one DD who had become borderline psychotic with bart and within three weeks of taking the parsley/lumbrokinase was fine. That was 2 years ago already.

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