I have an absolute severe case of Bartonella (flare ups everyday) that can cause encephalitis and land me in the hospital at the snap of a finger.
I tried Rifampin (with doxy) and it was amazing. 90% of my symptoms cleared up with Rifampin. But Bart became resistant after 2 months and the Rifampin was worthless. Literally slowly stopped working and encephalitis symptoms crept back.
Now I'm taking Houttuynia (HH2 caps) and it's helping... but again I feel as though Bart is finding ways around it or even developing some resistance (I thought they used Houttuynia FOR resistant Bart strains)
Anyhow... what would you do in my situation? It's becoming a matter of life or death and my family is discussing options. I can't ignore Bartonella for a single day or major CNS symptoms come on and I lose 5 lbs & end up in ER with swollen CNS and brain and feelings of going into shock Bart Encephalitis (Dr S talks about it in his book)
I really can't see an LLMD until April. I'm seeing a Naturopath right now but quite frankly they don't know much about Bart. They have me on Amoxicillin + Zithro + Plaquenil. It's just not touching Bart.
I pray to God that Houttuynia (HH2) continues to help and keep Bart at bay. And hopefully Bart can't/won't develop a resistance to it. I take 8 caps a day and sometimes 12 caps if Bart comes on before bed (which it usually does)
This is awful & at 28 years old I feel my days are running short.
Other options if all else fails...? Ozone? Colloidal Silver?
I dunno
**edited name of LLMD**
[ 01-14-2012, 02:46 PM: Message edited by: Lymetoo ]
Posted by jackie51 (Member # 14233) on :
Have you tried Cipro or Levaquin?
What about Byron White Formula A-bart?
I know nothing about ozone or collodial silver. I don't recall either being mentioned in Dr. B's guidelines.
Posted by jackie81 (Member # 27031) on :
Iam sorry you are going through this.
What are your symptoms of bart?
Like Jackie asked have you tried levaquin?
Posted by seibertneurolyme (Member # 6416) on :
Colloidal silver will not work in my opinion. Hubby even did that IV. And he did a few IV blood ozone treatments -- very expensive and I don't think they did much either.
In my opinion you need to attack bart in multiple ways.
As I said before I think either cipro or levaquin or factive would be helpful.
Or if you are going the herbal route then cryptolepis might work.
But if the brain is too inflamed then I think you need something like IV rocephin while you also take the bart drugs. According to Dr B rocephin is bacteriostatic for bart. The first time hubby did rocephin years ago it did help, but symptoms came back within a week of stopping the rocephin. But that was the only med he was taking at the time.
I don't know if bicillin would help or not -- hubby never tried that.
If you do not have the herpes virus then I would try the amino acid arginine with your other treatments.
If you have any left then add back the rifampin. Sometimes combos of meds can work when the single med does not.
I would also increase your antioxidants to help detox the brain. Vitamin C, CoQ10, pycnogenol (pine bark extract).
If you are not doing so I would add in lumbrokinase or wobenzyme -- but go slow on the doses. You need something to help clear up cellular debris and open up bloodflow so the meds can get to the bacteria.
Sorry things are so bad.
Bea Seibert
Posted by glm1111 (Member # 16556) on :
A strong combo of antiparasitic herbs and high dose salt/c knocked out my bart and babs. (ramped up slowly of course with salt/c) Perhaps Ivermectin with doxy could help.
I would definitely give this a try. Very upset to hear you are not doing well. I am going to pm you.
Gael
Posted by seibertneurolyme (Member # 6416) on :
One more thing I am not sure if I mentioned before. You could try stephania tincture from Woodland Essence. I don't really think it will get the bart, but it does cross the blood brain barrier and will help with the brain inflammation.
I would also stack most of your meds late in the day and especially before bed. Bart is supposed to replicate over night.
I know with hubby we sure are glad to be rid of the nightly waking up seizure-like episodes that lasted for almost 10 years before we got rid of his bart or whatever it was. He has been off seizure-meds for over a year and the lab has not seen what they thought was bart on his bloodslides in over a year.
Bea Seibert
Posted by canefan17 (Member # 22149) on :
Thanks for help yall
Seibert,
Cryptolepis helped your hubby for Bart?
And do you think IV may be necessary to treat a Bart this bad? I guess I will have to try Levaquin soon. Tendons be damned.
Posted by TF (Member # 14183) on :
I would take Levaquin. That's how I got rid of bart. (Then, followed up with Bactrim DS.)
You will almost always get some warning symptoms if tendon damage is going to occur. Be sure to load up 2 weeks in advance of the Levaquin with magnesium, etc. as advised on this site:
Do everything it says on this site regarding the levaquin. Lower dose, etc. if need be.
Posted by canefan17 (Member # 22149) on :
TF,
Can you take magnesium while on Levaquin too? (nevermind, I see Dr S says yes)
**Lymenet rules do not allow the posting of LLMD names**
[ 01-15-2012, 03:35 PM: Message edited by: Lymetoo ]
Posted by Lala (Member # 29864) on :
If you have significant encephalitis, you need to add something that penetrate the brain well and that is minocycline or rocephin.
Posted by robbiem (Member # 32092) on :
I agree with Gael --- perhaps it's time to hit a different infection and back away from the Bart, even though it's seems to be the thing that is most predominant in symptoms for you.
I had the same issue with Babesia. My LLMD backed me off of the treatment I was on for that, even though my symptoms were over the top, and instead we went after the parasites.
I felt infinitely better within just a few weeks, and oddly enough the Babesia symptoms all but subsided.
Posted by Dave6002 (Member # 9064) on :
The Bart resistance developed to Rifampin or other medicines or the immune system probably is due to biofilms formation.
By attacking the biofilms, Bart may be accessible by the medicines and the immune system again.
That's what I am doing now and it seems working.
I don't have such severe symptoms as yours. It's hard to believe that such severe symptoms are from Bart
Posted by canefan17 (Member # 22149) on :
Dave,
What are you doing to attack biofilms? I have Lumbrokinase that I haven't used yet.
Posted by robbiem (Member # 32092) on :
canefan17
I have heard that aside from enzymes, that Molybdenum as well as Bismuth are promising.
Also something called Interface Plus -- which you need a prescription for, but can buy online.
Posted by Myco (Member # 9536) on :
Cipro worked for me. No tendon problems when you take magnesium a few hours away from the antibiotics.
Posted by ihavelyme (Member # 30170) on :
I also suspect biofilms could be the culprit in this case.
Try some biofilm busters and then perhaps re-start the rifampin or even HH2 or A-bart.
Posted by GiGi (Member # 259) on :
Treat parasites the Klinghardt way.
Address KPU seriously before getting into more killing.
Address biofilm from all angles possible, to avoid shifting of toxic metals into the CNS. Make certain dental mouth is okay, including addressing wisdom teeth site, whether still there or not.
Address toxic heavy metals and allergies with Allergie Immun.
Look into new HK therapy, a way to get control of/reduce any cytokine storm.
Clear EMF from your home and check mold exposure. If you feel better away from home, these two may be contributing in a big way.
Learn energetic testing - a method that stops you from making major mistakes. And try to find a doctor who does it well.
Avoid going for the quick fix. There is none when it comes to a chronic disease or Lyme, whatever we still call this thing that is keeping us ill.
Don't insist it's Bartonella. We only can test for two of them, but know there are many others bartonellas. Same for Babesia. What makes us think everyone of them causes certain symptoms? We don't know what we have, can't test for them. Even testing energetically, meds cross over into different infections and work for different pathogens.
Treat it all in a gentle way. All need to be addressed alongside each other. Take a look at the KLC (Klinghardt Lyme Cocktail). Don't look for a homerun -
Give a good doctor or therapist a chance to learn how your body works before you run off to another to start a different treatment or take another's favorite thing. Your body is unique. Patience.
Maybe rethink your approach.
Take care.
Posted by Dave6002 (Member # 9064) on :
quote:I have an absolute severe case of Bartonella (flare ups everyday) that can cause encephalitis and land me in the hospital at the snap of a finger.
Such symptoms may point to allergy. Have you checked for allergy?
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