posted
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?
Haha, what is a sign of Bart? Being impatient or wanting to cry? I really envisioned symptoms disappearing by now
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.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Yes.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
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)
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:
canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
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! Posts: 5394 | From Houston, Tx | Registered: Aug 2009
| IP: Logged |
posted
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
posted
Sad to say, but I would think she was a rare case.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
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.
posted
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.
Posts: 238 | From new england | Registered: Feb 2013
| IP: Logged |
posted
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!
Posts: 187 | From Connecticut | Registered: Jun 2013
| IP: Logged |
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!
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
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). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
posted
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.
Posts: 348 | From NJ | Registered: Sep 2011
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[Frown]](frown.gif)
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic