Help with peripheral neuropathy

Just new to Help with Cpni. I'm having multiple problems and don't know what to do. Have been sick for thirty years. First bout of profound fatigue and brain fog was 1984. Developed multiple chemical sensitivites in 1994. Tested positive for Cpn in 1998. Started high dose doxyi back then, which failed to maintain any improvement after two years. Discovered Marshall Protocol around 2005 and gained some improvement but stopped antibioticsi after four years as i couldn't get reliable medical information on the treatment. Around 2010 I started developing painful bladder syndrome/interstitial cystitisi that was initially relieved by azithromycin. Then I discovered the Wheldon protocol and decided to try that. Doxy 200mg/day; Zith 200mg Mon, We'd, Fri; pulsed Flagyl 3tabs/day one week every month. After 18 months the azithromycin stopped helping with the bladder pain so I added Noroxin, 400mg twice a day, to the combination, which helped for a while, then it stopped helping too. Over the last six months I've started getting peripheral neuropathy. I'm fairly certain that it was initially caused by metronidazolei. The numbness/tingling would stop as soon as I stopped the metronidazole. Then the numbness started coming back but stopped when I stopped the Noroxin. I tried Rifampicin two weeks ago but the feet numbness worsened significantly after only three days. I'm taking multiple vit B supplementsi, bio b12, pre-methylated folate">i, nerve protection vitamin formula, antioxidantsi, vit D, all the good stuff, but it looks like the nerve damage is permanent and getting worse. Now the numbness seems to come on after taking any of my other remaining antibiotics - doxycycline and azithromycin. Without antibiotics my symptoms all flare up, notably fatigue, generalised pain and depression. The bladder pain and discomfort become absolutely unbearable, even with opiate painkillers. I'm frequently having suicidal thoughts at the moment, although I'm trying to stay positive. Meditation helps a little bit. Can't take any antidepressants due to horrific side effects. I can't find any doctors in Australia who have specialised knowledge in treating chronic Cpn. I'm wondering if there are any antibiotics that don't cause peripheral neuropathy that I can take. I've only taken 250mg of Zith in the last week but my tingling feet seem to be getting worse not better. Can anyone offer some practical guidance here? I know this is very complicated but a safe antibiotic protocol would be most welcome. Thanks. 

Hi DingoBlue2,

I don't have MSi - my Son Rick does.  He's started his protocol just about 8-10 weeks ago.

I do however have Peripheral Neuropathy.  Given your description - this may or may not help - but is probably worth a try.

My Peripheral Neuropathy improves significantly when I go GLUTEN FREE.  It's not easy to be entirely gluten free, but it can be done.  Gluten is found in wheat, rye, and barley - and sneaks into foods too - such as Soy Sauce.

Gluten is also implicated in Gluten Ataxia - and for Rick - his "Non-Celiacs Gluten Sensitivity" means he gets significantly weaker fairly quickly after eating even a tiny amount of gluten.

The good news is - a Gluten Free trial is fairly easy - 3-6 weeks of being gluten free should be enough to tell if it's going to help.  If I were to start Gluten again - my feet would be "burning" in about 3 weeks time - and those symtoms take about 3 weeks to dissappear once I cut it out again. I know - because I've confirmed it by trying it both ways several times.  When you are gluten free - going back on gluten is known as a "gluten challenge."

I would definitely encourage you to try this out - as the cost to you of doing so is small (sacrificing those doughnuts or crouisants you might love, etc.) - but the return could be pretty high if gluten is causing any of your issues.  It could be a cause of more than one issue. 

Seems some folks here had their gluten sensitivity disappear once they'd been on the Wheldon / Stratton protocol for some time....

Best & Highest Regards - and my sincere wishes and prayers for as smooth and complete a recovery as possible.

Tom

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

I started having peripheal neuropathy when i contracted cpni but about a year after I was diagnosed. My mom told me about metanx and it started it.  It helped me but I also went all organic, non processed, gluten free foods.  and I was on abxi and flagyli pulses.  Hope this helps.  

Doxyi 100mg BIDi, Azithro 250mg MWF, NACi 2600mg, adderal 20mg, VCO, recently switched from flagyli to Tinii pulse once monthly & supplementsi

Do you know what your B12 and Folate">i levels are?

Anne

I'm not sure if you are asking me or Tom, but my b12 were fairly normal.  I'm not sure about my folate">i levels.  I did the genetic genie testing and I have the MTFHR mutation. I believe it's the A type.  

Doxyi 100mg BIDi, Azithro 250mg MWF, NACi 2600mg, adderal 20mg, VCO, recently switched from flagyli to Tinii pulse once monthly & supplementsi

R-lipoic acid helps ( ALA ) alot, but you need to make sure you either get the R-lipoic or supplement with Biotin as plain ALA will deplete your biotin causing hair loss and lots of other stuff. Linda

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