SFN, Lyme and Bart...from France

Hello,

I am French and my message is translated because my English is not perfect. I hope you understand.

I have all the symptoms of SFN but not yet confirmed. In December 19 I started to have terrible burning feet and itchy hands. I couldn't stand shoes or socks. Then in 4 months it started to leave on its own to leave me alone for 7 months.

I have had confirmation of lyme (relapsing fever), traces of barto, mycoplasma, as well as other reactivations. Candidiasis, according to the doctor. No autoimmune cause according to LLMD.

I saw a neurologist who told me that SFN is idiopathic.

I changed LLMDs because after 4 months, I couldn't stand the treatments of the 1st. My body was burning all over me, not just my feet and hands. The back, the face, the eyes, the stomach.

I didn't think it was this SFN that was coming back in force, I was thinking of Herxes or the evolution of Lyme.

My new LLMD started out by trying to treat candidiasis first. I had too many burns and he changed the treatment by adding an abx. There he wants to attack the bartonnelosis with rifampin and other abx / plants treatment.

My body is burning all over me it's hell. This has been going on for several months.

Strangely enough, last week I was on vacation by the sea and my pain has decreased by over 50%. They came back in force on their way home.

I am losing hope more and more to cure myself or relieve these burns. Can Bartonnelose be the cause of this SFN? is this Lyme?

I have a lot of bart symptoms and I'm finding more and more of them and getting interested in them. SFN is he part of it?

Can Abx increase SFN burns?

Thank you

RainyCloud said...
Hi tiboto33,

Welcome to the forum!

What does SFN stand for?

Thank you!

Small fibre neuropathy ?

hello, yes SFN is small fiber neuropathy.

the neurologist tells me that I have the symptoms but did not puncture my skin.

at the moment it is burning and tingling sensations all over the body. my back when I am lying down hurts a lot.

my LLMD thinks this is from bart.

Girlie, can you tell me what kind of burns you had? and how did it go?

thank you

tibito33,

Hello and welcome!

“Strangely enough, last week I was on vacation by the sea and my pain has decreased by over 50%. They came back in force on their way home.”

- Sounds like you have mold exposure at home and mold toxicity.

Mold has always caused horrific burning for more, both during exposure and while detoxing it out of my body. You must first get in a clean environment that doesn’t have mold or water damage. Beware that possessions like clothes, furniture, books, papers, electronics, etc that have been in a moldy environment can easily contaminate a clean environment with the mold toxins that are present on them.

There are a few good resources for information.
https://iseai.org/patient-resources/

https://www.survivingmold.com/resources-for-patients

https://paradigmchange.me/wp/stuff/

tiboto33 said...


Strangely enough, last week I was on vacation by the sea and my pain has decreased by over 50%. They came back in force on their way home.

u

can i just check something is not perhaps lost in translation

when you say "came back in force on their way home"

can i clarify - did the symptoms get much worse while you were travelling home - or only after you arrived home ?

i agree its very hard to know what to make of this - there are however a few things to consider.

one of the possible explanations is that mold exposure in your home and possibly some other places you visit where symptoms flare - is the cause
although this does not fit well with the symptoms flaring before you reach your destination - as in theory - the symptoms should not flare before your exposure goes up - which is why i asked the question.

so another possible interpretation is that something in the vehicle you are travelling could be causing the flare ( some people with mold exposure have symptom flares from just being around possessions that have been exposed to mold, especially anything fibrous or absorbent like clothing)

mold is however a controversial topic - for some people it seems to be the absolute primary driver of symptoms and others seem entirely unaffected - so hugely variable. complete avoidance of all possessions and affected buildings seems to be the only reliable true test - but a huge undertaking - especially for people who are ill and financially challenged.

other possible angles to consider

stress -
travel - including the preparation to travel - is very stressful - especially if you are unwell - and people with lyme and lyme like illnesses often have very much reduced ability to handle stress. i have personally experienced symptom flares from the stress of having to prepare, pack all my food, supplements and medications for just a few days away - when feeling unwell - and then drive for a couple of hours - on one occasion this lasted the entire duration of my stay away - 4-5days.

the other possible consideration relayed to stress is that sometimes places or situations and our anticipation of them can be significant drivers of stress - even if we are not fully conscious of it at the time. for instance if there is a stressful relationship in the home ( not uncommon if there is chronic illness) then just the knowledge that you are returning to this stressful environment can be enough to trigger a stress response that drives flares of symptoms - even if we are not fully conscious of the cause.

i am sorry i don't have more definitive answers for you - but i hope the above is at least helpful in some way in the though process you go through as you try to figure this out.

tiboto33 said...

On the Detox side, I try to do it but it should not be enough. I take 300mg of glutathione 2 times a day, milk thistle, desmodium, I recently added turmeric as well as detox ampoules based on pisenlit, elderberry, and black radish.

I also have vitamins B, D, C, E, zinc, magnesium, selenium and probiotic.

Sometimes I take a teaspoon of super activated charcoal.

FYI Turmeric makes me herx very badly, it breaks down biofilms and is anti-bacterial. I personally wouldn't use it for detox.

I would take binders like activated charcoal much more often. Are you taking the magnesium daily?

I take binders almost every single night, I wake up in the middle of the night or at 6am to take 2 pills.
I started with activated charcoal, sometimes people rotate different binders, I think different ones work differently depending on what toxins we have. When I'm herxing very badly I take 2 binder pills 2x a day, spaced 2 hours apart from food and meds (yes it's complicated).

This page has lots of good detox methods:

https://www.tiredoflyme.com/detox-methods.html

This is the binder I'm currently taking:

https://microbeformulas.com/collections/products/products/bioactive-carbon-biotox

The only other binder I've tried aside from charcoal was citrus pectin, and that didn't work for me.

orbitingaround said...
I have had severe burning from Bartonella, it caused trigeminal neuralgia and made it feel like my brain was on fire. That symptom is gone with treatment.

If you felt better by the sea maybe it was from the sun/Vitamin D, low stress, salt water, and walking barefoot on the sand (earthing). Those things all reduce inflammation.

Are you detoxing?

.how long were u on abx before the burning in brain subsided?

What is LDN ?