Sorry to hear that. What did Dr J say about you not getting any improvement?[/quote] The doctor I treated under was trained under Jemsek....
That's exactly what I've been doing. It's the only way....
I've had heavy neurological nerve issues for over two years. From head to toe. Numbness, weakness, fasculations, etc etc. My vision is gone. When symptoms first started to appear I had a brain MRI...
I'm going on past two years now 😢...
MS/ALS or Lyme? I've had HORRIBLE nerve problems for over two years now. Bed ridden. My nerves are completely screwed up head to toe. Permanent fasculations in my calves for three years and in and...
I'm just really scared. I don't know it I have some neurological disease like MS or if I'm sick because of these infections. I don't know what to think or believe anymore. I'm just so hopeless and...
I treated clinically for a year on Dr. J's protocol. I got nowhere. I suffer from severe neurological issues. Damaged to nerves throughout my full body, complete loss of bladder sensation/urge for...
Started back on rifabutin a month ago. 6 days in horrible pins and needles around my whole upper torso. Stomach, chest, back etc. Very warm skin. A 101.7 temp. Just felt very bad. I went off it for a...
Over the last two years I've fallen apart with horrible neurological issues with my nerves. Numbness/weakness in the legs/arms, scalp, fasciculations,major vision changes, etc etc. My entire body....
I am under a well trained LLMD. She did some blood work first to see if I'm able to go on it. She doesn't even want me starting at double dose. Wants me starting low. I know Dr. H treats his...
Thanks for the reply. I'm taking it along side azithromycin as well....
Over the summer I was pulsing rifabutin. About two weeks in I got severe heavy pins and needles all over my body. Stomach/chest, legs, arms, neck etc. Literally everywhere. As well as very warm skin...
I've started back on oral abx for bartonella once again from the new LLMD I went to who specializes in Lyme especially with IV. Not sure why she went with orals again like I'd been on all year. Had a...
I've been battling some VERY heavy neurological issues for two years and I'm getting worse. I've treated clinically for one year so far through the Jemsek protocol. No improvement. My initial CDC...
Is it possible with bad nerve damage to heal without IVIG?...
I emailed you....
I dont want to say whether you have lyme or not. I do not know. I'm also sorry if I upset anyone on here because they've been gaslit enough. But the sad truth is that it's very difficult to know...
Are you saying it's possible I don't have Lyme and strictly autoimmune? Do you think the bladder symptoms/nerves can repair? Thanks...
I'm looking into ivig. Are you referring to my neuropathy and or my bladder issues? Do you think it sounds more autoimmune over bacterial? Thanks...
Thank you. When you mention his damaged nerve what nerve exactly are you referring to?...
Thank you very much for all of that. So your son did lose the urge/sensation to urinate as well correct? How long did it take him to recover from injury? Do you think this was more inflammation or...
Mine is definitely nerve related with signaling to the brain. I've had nerve pain/burning in my penis and testicles for a few months. The pudendal nerve and other sacral nerves are definitely...
I hope the nerves can heal one day and I can go back to normal 😔...
I found one post from someone online from back in 2012 that is my story EXACTLY. Every detail from beginning to end with exact symptoms. I'll share here below: Hello I'm male age 30 I suffered some...
Do you think I will eventually get my urge of sensation to urinate back? I sure hope so. This is torture on top of everything else going on....
Thank you for that. Mine is definitely nerve related. Pudendal nerve/branch. I had nerve pain in my penis a couple months leading up to it. Sharp shocking pains. I had some sexual activity the night...
I'm clinically diagnosed. I have horrible full body neuropathy and have for awhile. I'm honestly just really scared and my mind is all over the place. After it finally messed up the signaling to my...
I recently had a spine MRI done and had a brain MRI a year ago in March. I had an EMG done about two years ago well before things got really bad with me. Do you have bartonella by chance? Can the...
Was your perineal nerves caused from neuropathy? Did you get sensation back? I forgot to mention I have had pudendal nerve pain for months. Is this permanent?...
Throughout the past two years when all this started it's been all neurological. Started out with my arms feeling weak and numb and progressively spread downwards to my legs. My legs (calves) being...
I believe it's just a signaling issue with nerves and the brain chemistry being off....
Still there! Felling much better though, back to full time work and enjoying life. The twitching in my calves has never stopped, it’s my last remaining symptom. I don’t think it’s even Lyme that’s...
How long did you treat? Thanks...
Girlie, How did you treat and how long did you treat?...
Babesia positive through igenix? I have so many neurological Lyme symptoms that I was clinically diagnosed day one and put on a heavy abx protocol. 10 months in now. Just starting bartonella after...
Thank you. The permanent numbness all year and twitching has me worried they will never recover since it's not been intermittent at all. I noticed you only had a 41 band. That's all I had as well....
Did you have numbness? Would you say it was from a certain infection? Bartonella? Did you treat and for how long? Thanks...
Garzie, Were your lower legs numb and twitching nonstop for years? Do you think the nerves can heal from this?...
How are your calve twitches doing now Allen?...
Just curious how many with infections have a positive ANA?...
I have horrible neuropathy going on two years. Has never let up. Twitching, numbness, weakness, tingling etc. From my head to my toes. My legs are the worst. Arms right behind but I get small breaks...
I know it's more a nerve/signal related issue than a problem with the bladder. I'm not sure if from treatment stirring things up or just my body getting worse and showing more symptoms this far...
It seemed to go away 5 months ago when I was treating Lyme before going into bartonella recently. May bring it up to my LLMD....
I have it all over my body. Legs, arms, feet, head, face at times, etc. Everywhere. My nerves are my worst symptom. Not so much pain but numbness, weakness, pins and needles etc. I just finished my...
It seems to slowly be getting better at week 7 but still definitely not close to normal. I hope it continues. I appreciate your help. Thank you....
Oh okay. Thank you...
I had a urine culture. No infection....
I'm thinking sfn as well. Did you do IVIG?...
I'm clinically being treated for Lyme and co infections. Im 9 months in on abx on Dr J's protocol from my LLMD. I have a lot of neuro issues. Early on in treatment this symptom seemed to go away for...
I'm clinically being treated for Lyme and co infections. Im 9 months in on abx on Dr J's protocol from my LLMD. I have a lot of neuro issues. About 7 weeks ago basically over night I started having a...