For Those That Are Treating Bartonella (Or Have in the Past)

My burning nerve pain - it's almost indescribable - you can tell it's not muscle or joint pain...it is a searing pain - and pain meds don't touch it. (unless you go on long-term gabapentin/lyrica sometimes coupled with an antidepressant)

I'll trade it in for muscle or joint pain...any day. I also have/had the bone pain.
Tailbone pain was really bad for awhile, but it resolved.
I get intermittent bone pain where my neck meets me shoulder - left side...but only feel it when I rub it.

i am still up and down too, some days better than others.

the only change i had was switched over to Inspired Nutrition brand monolaurin, been going on a week, cant really tell a difference.

The burning I have is mostly in my skin and tissues. To me it feels like toxin pain. When I first left my moldy environments, I had the burning for 7 months straight. It was awful. I felt like it was toxins coming out of my fat cells.

When my Lyme symptoms first started, I would get tightness and burning in my face. It felt like the lower layers of skin in my face were constricting and cringing. I also had redness and burning in my face that felt like a sunburn from 2009-2015. My chest and back felt hot and sunburned, too, for a few months after symptoms started.

I've never been sure if the burning was Lyme or bart. Bart does cause a lot of skin stuff, and I've had plenty of that.

OriolCarol said...
I have nerve pain but it only happen when i'm resting... anyone knows why only at rest?

Generally mine is worse at rest - and I always feel better after I’ve done my exercises .
I think it could be the blood is flowing better to all body parts??

Not sure.

Personally I've always had cycles with the bart herxing and symptoms. My worst symptoms have been constantly painful/swollen lymph nodes (behind/under ears), fatigue, concentration, insomnia, various types of neuropathy. So very neuro-based.

I've been on a lot of treatments, have come a ways but still dealing with symptoms, albeit at a lesser intensity.

Most effective things I've found were PZA (combo'd with several other abx, including multiple intracellular). I really herbs like allicin, houttuynia, oregano oil, pulsed artemisinin, and various broad-spectrum herbals. I'm currently trying out some essential oils, they def make me herx even after all the treatments I've had! but I take it as a good sign of their potential effectiveness for me.

The most important thing for me has been rotating to different therapeutics whenever I plateau or feel a med combo isn't doing much anymore.

I've always had major herx issues which has made treatment challenging. I think Buhner and Rawls say bartonella doesn't have a high capacity to cause herxing but based on my experience and what some other researchers have to say I think that is not the case.

Lymiemomster said...
My son had the feeling of pins and needles all over his body last summer and it was awful for him to put on clothes.

He responded well to gou teng and of course continued treatment. Have you tried the Chinese cats claw Nic? It has been really good for my son

I took Cats Claw with around 5-6 other buhner recommended herbs and didn't feel that they did anything for me, however, I am planning on adding the entire Buhner bartonella protocol soon.

NicHostetler said...
Today is another really bad day. I'm very foggy, chest pain, dizzy, and tired. Every single muscle in my body just feels so weak its insane.

It all started to get really bad yesterday afternoon. I tried to go for a walk around the block after work but it made me feel worse.

Last night I woke up with my chest soaked in sweat and felt like I was dying.

Maybe its the clarithromycin giving me a bit of a herx? Who knows.. Just feel lost and like there isn't hope.

Those symptoms sound more like babesia to me. Are you still on the babesia meds or did you stop all that and switch to bart, or are you doing both simultaneously?

WalkingbyFaith said...

sebreg said...

I've always had major herx issues which has made treatment challenging. I think Buhner and Rawls say bartonella doesn't have a high capacity to cause herxing but based on my experience and what some other researchers have to say I think that is not the case.

Me too. Makes it really hard. I still herx on tiny doses of herbs.

I always thought it was interesting to hear both their views on that because I have respect for both of them and their thought processes. But these diseases are complicated so even with the best experts there is a lot of informed guessing. And with all the variety of species and strains it adds further complications and various iterations on how the diseases manifest and respond to therapeutics.

So long as you can keep finding ways to treat! slowly but surely is the way to go I think I always wished I could blast away, but in the end the herx response at least is helpful as a guide that a therapy is having some effectiveness for me.

I hope you are seeing good progress over time!

Btw NicHostetler, I just want to say keep hanging in there! rooting for you from my end!

Is the Biaxin (Clarithromycin) easier on the heart than the Azithromycin?

insomniaaa said...
Are daily reoccurring, intense lightning bolt kind of headaches as well as severe insomnia and high pitched frequency tinnitus typically associated bartonella ore rather with lyme or some other random unknown disease?

I feel like some critters are having a party in my skull and chewing on my brain tissue and / or meninges. The daily reoccurring, excruciating pain usually migrates between the temporal and occipital / cerebellar areas of the brain and lasts anywhere from 5 - 20 seconds.

I'm sure the insomnia would abruptly subside if I could just somehow get rid of these critters in my head.
Any suggestions please? Thank you.

I know tinnitus can be from Babesia.

I have the pulsatile tinnitus - and it is pretty much gone...since treating babesia.

I wouldn't' be surprised if Bart can also cause it.

I think continued treatment - and making sure you cover the coinfections as well.
Plus try some of the specific CNS/brain detoxes.

Some options:

Kudzu
Nutramedix Pinella
Jernigan's Neuro-Antitox II - CNS/PNS

NicHostetler said...
Thanks so much sebreg! I had to leave work a few hours early today. I felt like I couldn't stay awake and absolutely could not concentrate whatsoever. My eyes just wouldn't focus.

I had really bizarre shaking and just extreme exhaustion, brain fog, dizziness and muscle pain/weakness.

Hopefully this is just a herx and there are good days ahead.

I remember taking clarithromycin last summer in the beginning of treatment and it made me really tired too, but not this sick. I also saw a lot of improvement after a month on that and ceftin before I switched things up, so I hope it works like it did last year.

I just want to add that biaxin has always been a strong and effective drug for me. But the herxing can be very strong, and it manifests very close to yours, at least what I might presume is herxing in your case (except I don't get so much dizziness). My vision gets blurry as well and I have a hard time focusing my eyes and the concentration is nuked. For a long time I did not connect that to the infections and herxing but as I got better and other symptoms cleared up it became easier to make sense of the remaining symptoms and also how I was responding to meds. Early on I was smothered with such a nebulous rotating cast of overwhelming symptoms I couldn't tell what was what!

I've heard sometimes of people having been on a med and managing ok, then rotating back onto it further down the line and responding more strongly. Maybe it also depends on if it is combo'd with another set of meds that may have been different from the earlier treatment?