dx-neurolyme-symptoms after treatment

[JAYNE7600]

I have severe neuro symptoms that migrate all over my body all day and night everyday. dx with neurolyme after a tick bite in June.

Neuro symptoms include: chest pain (severe heaviness and shortness of breath) and severe burning in different parts of my body non stop, headaches everyday, freezing chills that come on out of nowhere, tacycardia (elevated pulserate of (112), elevated bp 154/80 when I have always had 120/80,temp. of 97.1 to 97.3 when my temp was always 98.6.

Weird twitching and like spasm feeling in my nervous system, spasm like feeling in my esophagus, trouble sleeping because of the constant pain all over my body.

My ID dr. said that the only 4 weeks of IV rocephin was the top tx for this and now that I was treated that it would take 6 months for me to feel any better but no other antibiotics were necessary and that Any dr. that would try to give me more is a quack.

My doctor is now treating me with ultram and neurontin for the pain and ativan to sleep better.

I am still sick and it's hard to be told that this is what you have to suffer with. My doctor also said and at the 6 month point what symptoms I have is basically what I am left with from the neurolyme and that is what I was gonna have; such as fibromyalgia, arthritis, and some nerve issues etc.

thanks for listening and do you know of others on these meds for this?

[tory2457]

KSA84 writes some pretty good stuff....and that's someone with experience with IV R.

Hope you don't miss this.

Nice having so many newcomers on the NEW forum..I send you good vibes in your recovery KSA.

[KSA84]

Hello, JAYNE7600 I too have the nero symptoms that are with me 24/7. Our symptoms are similiar, low body temp, severe heaviness and shortness of breath, tachycardia my HR does crazy things. I was in the ER Aug 5 HR was at 220 BP 160 over 96. No heart attack just Lyme. That so far has been the scariest lyme symptom yet. This topped my previous fast heart rate of 160. I have heart palpitations do you? Low body temp about 97.3. I get hot flashes and sweats. My ears and head have been ringing and hissing everyday since I got sick January 06. The headaches are severe everyday. Two MRI's, Ct scans are negative. The twitching or muscle spasms drive me crazy all day in different areas. I have terrible pain in my neck and spine between shoulder blades. I am dizzy everyday. I cannot work let alone walk. My HR before I was treated would rise to 120 upon standing. It's a little better now.

I just finished 4 weeks of Rocephin. Two grams daily first three weeks, 4 grams last week. I don't know what my LLMD is going to do about meds. I meet with him next week. He was talking about switching or doing pulse thearpy. I am still very sick. I have confusion and have developed severe anxiety and panic attacks. Depression has got me down too. Do you have any of these symptoms?  

From what I have learned 4 weeks of treatment is not enough for Neuro Lyme. Have you gone through any Herx reactions? It takes Rocephin to really get going about the third and fourth weeks. This is when I developed terrible Herx's.

Write back.

[Jenny Wren]

Just curious, have you had MRIs done?  I have had full spine MRI, and 2 brain MRIs, I have razor burn feelings on my body, have had them for 8 years now.  I just wondered with patients that have neuroklyme if they show any findings on MRI.  This is my only symptom.  Thanks.  I hope you get some answers.  It sucks to not feel well.  Jen

[tory2457]

You are a perfect example of just how important the "guidelines" are....the IDSA guidelines and the ILADS guidelines.

Your ID doc is correct,,,,(well, let me finish) BECAUSE he is following the IDSA guidelines..

There is another set of guidelines from the ILADS group of doctors. and this group treats with abx for well until you the patient feels better!

The ILADS group has presented the IDSA group with their research on people like you with neuro lyme....stating that some patients need to remain on antibiotics for longer than 6 weeks
and IDSA has refused to integrate this prolonged treatment..(which is based on research)

Hence, your ID doc says these other Doctors are Quacks...

SHAME on him!

but more importantly, shame on the IDSA for closing the door on sick people like us.
Insurance companies follow and love the IDSA...heck, they only have to pay for 6 weeks of treatment.
We can however give our teenagers antibioitcs for their pimples for YEARS; and Dermatologists doctors aren't called quacks.

2 yrs olds with ear infections are given LONGER than 6 wks of antibioitcs to resolve ear infections; and the pediatricians aren't called Quacks!

It's only the Lyme doctors that deal with Neuro Lyme patients that are suffering that are called Quacks.

I have Neuro Lyme: well, I was diagnosed with MS..

My very smart and caring doctor has been treating me for a year now...and I am getter better! Even my lesions in my CNS have lightened!

sorry for the long post, but clearly it's your health--I'd bet your doctor's health is fine.
Imo, I would run from him and find a doctor who understands Lyme and can help you get well.

ilads.org

great places to begin to read and understand Lyme Disease..

[cave76]

Jayne said:

*****now that I was treated that it would take 6 months for me to feel any better but no other antibiotics were necessary and that Any dr. that would try to give me more is a quack. ****

That's in direct contradiction to what most llmds recommend!

ILADS docs alway recommend following up IV Rocephin with oral abx. Plus they usually have the patient take a 'cyst buster' like Flagyl or tinidazole to pursue the cyst stage that Rocephin is said to encourage.

Plus, there are plenty of people who had to take R. for much longer for good results--- but that's so individual it's impossible to give a number of months.

I'll try  to find articles that speak to that, but perhaps others have those at their fingertips.