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Bartonella/Peripheral Neuropathy question

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Posted 7/27/2016 6:27 PM (GMT 0)
I've had many symptoms come and go over the last 2 1/2 years but the most persistent is peripheral neuropathy. Tingling, burning feet and lower legs (some tingling in hands) and more recently some numbness in parts of my toes. It seems like I've had periods of ...remission or at least a lessening of symptoms for a time but the pain in my feet seems to be slowly but painfully worse over time. Symptoms seem to get worse after extended exercise.

In the past I've had eye twitching, aching joints randomly moving to different places.

Over all other than sometimes a basic lack of focus and need for a daily nap, I haven't felt sick or debilitated like so many Lyme patients.Some tests show a weakened immune system and inflammation (C4a-?).

I have not tested positive for Lyme and initial not even for Bartonella although a later test from i think....Galaxy labs? did show Bartonella but not a specific type.

Finally to the Question! Does anyone out their with Bartonella have similar symptoms where they don't feel sick but have a lot going on with painful feet, tingling, burning and numbness? After seeing and LLMD for quite a while I'm wondering if I should be seeing someone else?

Thank you!
Posted 7/27/2016 6:32 PM (GMT 0)
Well, I have the tingling, burning symptoms - not just in my feet and lower legs, though.
Mine is attributed to bart.

I'm not sure what you mean by 'don't feel sick'.

I don't have fatigue or 'feel sick' - but I do have more symptoms than the peripheral neuropathy.

If you have bartonella, it's possible (probable?) that you have another infection - i.e. lyme, babesia.
Have you and your LLMD discussed the other infections?

How long have you been in treatment? and how are you treating?

Are you doubting the bartonella diagnosis? If you were positive via Galaxy labs - I wouldn't question it.
Posted 7/27/2016 6:42 PM (GMT 0)
Hi borntorun!-

I am so sorry that you are struggling so much!

Might I ask what are you doing and taking to detox you body?

Many people here including myself, have to detox daily and use multiple ways.

You might want to look into taking something for inflammation! I take A-Inflam it is a Byron White herbal supplement. It has helped me out . Ask your LLMD about this, maybe they can order some for you. You can't purchase Byron White yourself.

What type of treatments has your LLMD done with you for treating Bartonella?
Antibiotics? Herbs? Both?

Best Wishes!
Posted 7/27/2016 7:09 PM (GMT 0)
Hi Borntorun

I can't answer you specific questions about the neuropathy - mine is due to Lyme, I think.

I wanted to suggest that the foot pain after exercise - have you looked into ways of improving circulation? I have this issue and that helps. Grapeseed (not grapefruit) extract, Hawthorne, ginkgo biloba, ginger, cayenne, pine bark extract, dong quai, gotu Kola, garlic, prickly ash, horse chestnut, Schisandra Chinesis...

But did want to suggest that it is always a good idea to re-evaluate your protocol every 6 mos. or so - and getting a 2 nd opinion at your stage is a very good idea - a 2nd opinion is more like having another resource to help inform his insanely complex situation. Very smart.

-p
Posted 7/27/2016 7:15 PM (GMT 0)
I have that..they said mine was reynauds and I have some other vascular symptoms like the levido reticularious...I hope it goes away someday!!!!... Ends of my toes are red
Posted 7/27/2016 10:43 PM (GMT 0)
PN can be caused by many of the coinfections. You actually sound very similar to me. All my other symptoms come and go and the PN stays. It doesn't react to the drugs that my other symptoms react to and interesting it was the babesia protocol, particularly cryptolepis that brought out my first PN herx. Now it hits other organisms too so who knows exactly what it is. I've tested for mycoplasma, babesia and ehrlichia
Posted 7/28/2016 7:53 AM (GMT 0)
Wow what a great bunch here! Thanks everyone for your replies. I'm still trying to navigate my way around here. Can't see where to make individual replies...I'm sure it's right in front of me here
Posted 7/28/2016 2:00 PM (GMT 0)
For individual responses, you can just answer all in one post and just mention the person's name you are referring to, or you can quote (square with an exclamation point in in on the top, right hand corner of each of the posts), and then post your answer under your 'quote box'.

Lyme disease testing is very poor, and testing for the co-infections is even worse. Some states have even passed laws that doctors have to tell a patient that having a negative test does NOT rule out the person having the infection. Lyme lowers the immune response, and since these tests only look for antibodies, it can be nearly impossible for a test to be positive, due to the effects of the infection. I had to have a year of abx therapy to get a fully CDC positive Lyme and RMSF test.

There are good LLMD'S and not so good LLMD'S. Your LLMD would do well to treat you for Lyme and possible Babesia also. Some of us have asymptomatic infections that will stop us from healing from the infections we test positive for/ have symptoms of.
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