Nothing has worked in 5 years for my DS...now treating possible Bart, test are negative.
Positive for Lyme and Babs but been taking ALOT of abx over the years and still no better.
Different docs and labs question if lyme is still active and babs numbers still highest, never goes down, so doc is trying bart.
My question: LLMD now treating for possible Bart because only symptoms EVER are only neurological, now mentally disabled.
Currently on Zithromax / Minocycline / Bactrim DS...have appt. with LLMD in a couple of days was wondering if I should switch DS to Rifampin with Biaxin?
Been on zithro and mino for months and bactrim ds for 2 months, no change, no worse but no better. Only positive is his ASO titers are finally coming down, I'm guessing because of the zithro.
Was on malarone for years but did nothing for his babs numbers so doc pulled the malarone and now just taking artiminisin (sp?) 3 days a week. Was on mepron/zithro years ago for it.
Am I too impatient, should he stay on the bactrim longer or should i ask for rifampin/biaxin?
I ask because i understand rifampin/biaxin is like the best for bartonella. Also can he still continue with the zithro/mino while on rifampin/biaxin?
Also going to start herbs after new year for bart and babs.
Also if my DS does have bart, how long before i should see any progress? when do i give up on bartonella and move on?
Posted by S13 (Member # 42830) on :
If his symptoms are primarily neuro, then yes suspect bart.
Some bartonella cases seem to respond to bactrim and some dont. Rifampin seems to be the better choice for most bart cases imo. Biaxin further increases rifampin levels by inhibiting cyp3a4 enzymes, thus the combo is very beneficial. Higher dose rifampin should be considered when response is insufficient, but keep his age and weight in mind. On average, men seem to have lower blood levels of rifampin compared to woman according to studies.
Still, bart can be very difficult to eradicate for some, even with high dose rifampin. Not everyone seems to be capable of making antibodies. Perhaps its due to an overwhelmed immune system (from all the other infections) or perhaps a genetic factor is involved. Some people seem to be able to cure it with a couple of months of bactrim, but i guess they are the lucky ones.
His scientific explanation of bart is great and he has an extensive protocol of herbs to counteract the symptoms and reduce bacteria load. Some of what he recommends makes a lot of sense, like restoring cell apoptosis by inhibiting Nf-kB with specific herbs. Bartonella hides in cells (the lining of the blood vessels) and prevents the cells from self-destruct (apoptosis) so it remains undetected and safe from the immune system. Never expect the herbal protocol to be a quick cure though.
Posted by TNT (Member # 42349) on :
I am SO sorry to hear this frikfrak. There is nothing more devastating than seeing one's child eaten up by these diseases.
My initial thoughts in response to what you shared is that this is bart, and perhaps lyme. Both are extremely immune-suppressing. Both cause debilitating neuro symptoms.
I agree with S13. Rifampin and biaxin is a good combo. But sometimes 3 ABX are needed. I know this is older info, but in Buhner's Healing Lyme book he does mention the use of rifampin, zithro., and doxy being a good combo. Perhaps for an even bigger punch (if tolerated), would be the substitution of biaxin for the zithro.
Even with this combo it may take a while.
From what I understand, the only thing stronger for bart would be IV gentamycin. But this would not give as broad of coverage.
My heart goes out to you. It is so hard seeing innocent children and young people suffer.
Healing thoughts and wishes
Posted by rowingmom (Member # 41213) on :
I would try Buhner's full protocol.
We were using low 1/4 dosages of everything in the protocol except l-arginine because I am afraid that we have MMR virus involvement. This kept our daughter at the 80% improvement that she achieved with bartonella abx for 8 months.
It was the addition of Buhner's full babesia protocol along with the bartonella protocol that has brought her to 99%.
Posted by surprise (Member # 34987) on :
Did your son ever get the IVIG? Thought I read approved for one (high dose?)
Posted by frikfrak (Member # 26844) on :
Had appt. with doc yesterday and switched from zithro/mino/bactrim ds to rifampin/biaxin, but if no improvement after 8 weeks then taking him off.
My concern is that it'll take longer then that to see improvement but he said they will take him off that because usually if no improvement by then, then its not working.
Then we will try IVIG, was trying all options before that. Doc also said to keep on abx (whatever ones then) while doing IVIG.
I'm praying rifampin/biaxin shows something, really trying to avoid IVIG.
rowingmom: been lazy and just plain discouraged lately but am going to get with the program with the herbs: going back on Japanese Knotweed, was doing the pills but got to expensive so now have the powder.
The Hottuyonia (?) you recommended is out of stock so they suggested another one, will order that today.
how long before i see any improvement, to know if its working?
Also getting Dr. Zhangs art pills, he was on that a long while ago and his babesia levels when down to normal, stopped and they went back up so trying it again. Although he didn't act any better but my thinking is to get the numbers normal then I at least don't have to worry about it anymore.
thank you all for you help...don't know what i would do if not for this forum and others.