Bartonella treatment best penetrate bbb

Is there a Bartonella treatment that best gets to Bartonella in the brain. All my symptoms are in my brain.

Thanks for any help.

What symptoms put you in the ER, Solaris719? I started to use some antibiotics but had some psychiatric manifestations. I get the impression that many of those abx are too expensive for me anyway. Did you take them orally or with IV?

Rifabutin plus mino.


The fluoroquinolones are effective but the fda black box warning stops many from using them.

any particle smaller than 500 daltons will in theory cross bbb both .."allicin qualifies and maybe houttynia . the users of plasma rife believe radio fields penetrate bone and tissue ...

I have his book (Buhner- Bart)

I read somewhere that herbs that smell strong penetrate better because the smell is cause by tiny molecules that are small enough that they can penetrate the BBB. I think oregano oil, turmeric, cinnamon oil, etc... are some of them. Also, I believe several minerals that penetrate the BBB that have helped me are MSM, Boron, alpha lipoic acid etc.. Also, I’m pretty monolaurin will because it’s form of fat that your body can process

Brab,

You sound exactly like me. Hopefully the disulfiram has great effect for you, for me it did nothing. Have you considered autoimmune encephalitis? I'm as certain as certain can be that that's my problem and my current doc said he's so certain he doesn't even feel the need to test me. Here's something he wrote about it:

"Lyme patients with predominant autoimmune issues have strange experiences which they may find difficult to put into words.  Complaints I hear, include:  strange head pressure (not headache); “brain on fire,” derealization (feel like on a different planet); sensory overload, brain shuts down; altered visual perceptions; hallucinogenic-like perceptions, experience; severe, strange depression, treatment resistant and many others. These patients may experience a unique world of misery which is otherwise inexplicable and indescribable.  

SPECT and PET brain scans are usually abnormal. 

Lab tests may help.  Anti-GAD-65 antibodies are frequently present.  Anti-dopamine receptor antibodies may be present, currently I get this information through the Cunningham Panel (Moleculera), other labs may offer a less expensive test.  There are a dozen or so known autoantibodies known in patients with autoimmune encephalitis but commercial tests are not available.  Anti NMDA receptor antibodies may be checked but I have not seen a positive in Lyme patients. 

With antibiotic therapy there may be a dramatic response: they get much worse.  This is even more the case with therapy directed at Babesia and Bartonella. One recent patient tolerates Rocephin but shuts down (becomes miserable) with the smallest doses of Mepron, Bactrim, Rifampin and Flagyl/Tindamax. 

This is not a Herxheimer reaction.  This is the most crucial point of this post.  Continued therapy will not lead to improvement.  A Herxheimer reaction is caused by a mini-cytokine-storm.  It is normal, although exaggerated response to killing germs. This other reaction is caused by exacerbation of an autoimmune response: the production of self-directed antibodies. This is very troublesome and difficult to manage.  

Treatments may include:  IVIG, Plasmapheresis, immunosuppressant drugs and steroids.  Make sure you get the diagnosis right.  

A short trial of high-dose steroids may be therapeutic and diagnostic.  IVIG, dosed 1.5-2 gm/kg may the most practical therapy for the greatest number of patients.  Getting insurance coverage is the main barrier. The primary immunosuppressive therapy is Rituximab."

Do you have a good doctor?

Aerose I read that a few weeks ago when you posted it and have been reading his blog ever since. Couldn’t believe how much that sounded like me.

I brought that exact blog to my doctor and we are trying to figure out a way to get IVIG as it can be very tough to do without the right tests to show insurance.

Does he have any recommendations besides IVIG and plasmephoresis?

Are you going to get IVIG?

We should keep in touch until we figure out something that helps us.

I definitely felt like this as well. Like elvin, I'm not saying that the way you characterize it is inaccurate, just that for me it was a constellation of symptoms that lasted a defined period of time and did not seem to be autoimmune. For me, it was most definitely a month-long Bartonella herx. I had a lesser version of it beforehand for years, and then very little of it since. Maybe IVIG would have been helpful for me! I wish there were a way to test for these ting better! You say "Make sure to get the diagnosis right." How does one do that??

Girlie said...
Aerose - So how do you treat the infections? At some point they need to be dealt with right?

I think the belief is that I've long treated them. I have gone after infections for like 4 years with no improvement in anything. They either have been dealt with sufficiently or just aren't the main driver anymore- may not have been for a long time. Dr J thinks that the dysautonomia, toxic encephalopathy, POTS, derealization etc are all independent and not infectious driven. I have suspected that for a while and am happy to be off all killing med.s. Let my body try and rebuild

Gotcha. Didn't mean to doubt you, just curious about the diagnosis part. Sounds like determining whether it's autoimmune or not is a clinical determination?

Aerose: “ I have gone after infections for like 4 years with no improvement in anything. They either have been dealt with sufficiently or just aren't the main driver anymore- may not have been for a long time. Dr J thinks that the dysautonomia, toxic encephalopathy, POTS, derealization etc are all independent and not infectious driven.”

My leftover symptoms are pots, nerve pain (left upper side of body and arm/hand) , waxing and waning head pressure and memory issues

I guess I should ask him if mine aren’t infection driven.

I can’t imagine being stuck with these for the rest of my life.

I do have some good days though...

I herx'd for a few weeks on bartonella treatment and once very, very briefly on babesia herbs but that's it. Dr J thinks my issues are autoimmune encephalitis and just standalone POTS and dysautonomia. I guess that's a nerve inflammation thing. He's looking into IVIG for me for these reasons