Sister with Lyme-Sensory and Pain Issues

This post is regarding the latest with my sister's condition. The pain she experiences from what seems to be small fiber neuropathy is unrelenting in the absence of ativan (the only thing that really seems to be helping her right now). She can't sit for any length of time because of pelvic pain, and is often forced to pace around, but then that tires out her feet and she has to sit in discomfort just so the feet can recover somewhat. The point is, she simply can't get comfortable anywhere. Laying down is not an option, as the SFN gets worse when she tries that. Incredibly frustrating.

She has almost no functionality right now. Can't use her hands for anything more than extremely simple lifting tasks. She is spending most of her time in a room with very low light, almost totally dark, because her eyes are so sensitive to light; every time there's even a little bit shining, it causes an extreme neural reaction that feels like a seizure to her and that can often cause her skin to feel like it's burning. Sound that is too loud is also very bothersome to her.

She often falls into stupors that cause her to blackout for short periods of time, and if she happens to be walking, lead to her stumbling. This is a concerning safety issue, needless to say.

Isn't there something that can tamp down some of these symptoms while the underlying infection is being treated? Or are there no "shortcuts", and she'll be forced to suffer through all of this for months on end? Is there anything like steroids/nerve blocks that might be able to help? I thought things like that are sometimes prescribed for people with SFN. She keeps saying that the brain seems swollen, although we can't seem to get a darn diagnosis for encephalitis or something similar as of yet (mostly because of stubborn neurologists who have not wanted to really investigate; she hasn't even had an EEG!).

Any help would be appreciated. We are at our wit's end with all this crap.

Explore low dose naltrexone for pain management.

From my experience it seems to reset the pain receptors and possibly immune function.

For some the low dose naltrexone brings some pain relief pretty quickly.

Post Edited (carlnpa) : 12/6/2021 6:43:39 PM (GMT-7)

dcd2103 said...
So I know you mentioned how you were afraid she had some sort of encephalitis. Here is the panel that should be run, Dr Younger ran it on me.

https://www.mayocliniclabs.com/test-catalog/overview/92116

Dr Youngers book The Autoimmune Brain is basically about changes to the brain during autoimmune infection. It's a good read and may be useful to understand whats going on:
https://www.amazon.com/autoimmune-brain-five-step-depression-attention/dp/1538117703/ref=sr_1_1?gclid=cjwkcaiahrenbhayeiwafggkpe8ihdtj5i5z-pcbkbfpoz5byjtafee-axnh2oqedmodhyplgma30rocnu8qavd_bwe&hvadid=380042879518&hvdev=c&hvlocphy=9067609&hvnetw=g&hvqmt=e&hvrand=15941623669644227443&hvtargid=kwd-812546879258&hydadcr=15509_11247550&keywords=the+autoimmune+brain&qid=1638822255&sr=8-1

Hi Dcd, I was just reading that encephalitis can in some cases be fatal or cause permanent damage. I’m now worried about these possibilities. She’s had some of these symptoms for over a year now, and they’ve gotten worse recently. Any thoughts on all this?

Something else to explore - roxithromycin.

Roxithromycin readily crosses the blood brain barrier and accumulates in the brain.

It is EXTREMELY anti inflammatory.

It cures cdiff.

I use this, it is the easiest abx to tolerate I have experienced.

This was/is the backbone of the lyme Gasser Protocol from the late 90's, in vitro effectiveness on bart.

The Gasser Protocol used rox in conjunction with bactrim.

https://pubmed.ncbi.nlm.nih.gov/7782115/

"In an in vivo, non-randomised, open, prospective pilot study it was found that of 17 patients with confirmed late Lyme borreliosis (stage II/III), treated with combined roxithromycin (300 mg b.i.d.) and co-trimoxazole (bactrim) for 5 weeks, 13 (76%) recovered completely by the end of treatment, and four continued to have symptoms on follow-up at 6 and 12 months. This success rate is similar to that seen with i.v. penicillin and ceftriaxone. It appears that the reduced motility of B. burgdorferi makes the pathogen more accessible to the immune system."

Just a heads up: Roxithromycin has one of those long-qt warnings. As with most (maybe all) macrolides abx.


"As with other macrolides, due to a potential to increase QT interval, roxithromycin should be used with care in patients with coronary heart disease, a history of ventricular arrhythmias, uncorrected hypokalaemia and/or hypomagnesaemia, bradycardia (< 50 bpm).

Caution is warranted when roxithromycin is administered to patients taking:

---- QT interval prolonging agents (see section 4.5). These include Class IA (e.g. quinidine, procainamide, disopyramide) and Class III (e.g. dofetilide, amiodarone) antiarrhythmic agents, citalopram, tricyclic antidepressants, methadone, some antipsychotics (e.g. phenothiazines), fluoroquinolones (e.g. moxifloxacin), some antifungals (e.g. fluconazole, pentamidine), and some antiviral drugs (e.g. telaprevir).

---- Potent CYP 3A4 inhibitors such as protease inhibitors and ketoconazole."

PDF : https://docetp.mpa.se/lmf/roximstad%20film-coated%20tablet%20eng%20smpc_09001bee807a8341.pdf