Neuro Lyme Treatments? Will it go away?

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april81972
Regular Member


Date Joined Dec 2011
Total Posts : 135
   Posted 12/9/2011 12:11 PM (GMT -6)   
After reading through a number of threads I'm pretty sure I have Neuro Lyme. I have yet to see an LLMD but will be getting an appointment early next week in Howell, NJ.

My question is for people who have Neuro Lyme, how is it officially diagnosed and how is it treated? I am a recent infection (June 2011) but not diagnosed until late August. I was on doxy for 11 weeks and then off at the advice of a ID doc. I just started the doxy up again a couple days ago as I've had a few scary episodes of anxiety at night the past month. Last week I felt great but this week has been pretty bad.

Thanks for your thoughts

This board is great. Thanks to all of you for your help and sharing.

letgo
Regular Member


Date Joined Jan 2006
Total Posts : 146
   Posted 12/9/2011 3:59 PM (GMT -6)   
hi, when you say Neuro Lyme do you mean lyme that has gotten into your nervous system?? it took only a few weeks after being bitten for the lyme to enter my nervous system. incorrect dianosis and lack of treatment caused my chronic condition. a Lyme literate doctor will treat diagnose you clinically and not rely on tests. they are only 30% accurate leaving 70% to suffer the disabling effects. a good Lyme literate doctor will know what antibiotics to perscribe. if it is in your nervous system you will probably need IV antibiotics. i strongly suggest you look up
Dr. Joseph Burrascan 2011 lyme conference notes. Also look up
Herxhiemer reaction. when the bugs are dying they give of nuero toxins making you even sicker. the more bugs you have...the worse the reaction. what ever you do... dont delay get a lYme literate dr immediatly and start treatment. the best chance of not getting chronic disabling Lyme is to get propper treament ASAP. Good luck. look up the Lyme Disease Association of NJ. they will help.
infected April 16 1996
co-infections which?? no one knows....except me

Carrie48
Veteran Member


Date Joined Mar 2010
Total Posts : 638
   Posted 12/9/2011 6:21 PM (GMT -6)   
Hi there, my lyme disease has most definitely affected my nervous system. I am seeing one of the top lyme doctors in the country and he doesn't prescribe IV abx to most of his paitents. I often wonder if I should be having IV Abx but I do seem to be making a lot of improvements with the oral route...

I do have an awful headache today and don't know what that is from but wanted to add my 2 cents on the ABX vs. IV route for neuro lyme....

I am going to give the oral route another year and after that, if I'm still testing positive for lyme, I will seek another route of treatment.
DX with Lyme and Erlichosis in January 2010. January-August: Biaxin and Amoxicillian. September 2011 - ? on Rifampin and Zithromax. Symtpoms mostly neuro and have 20 small lesions on brain.

april81972
Regular Member


Date Joined Dec 2011
Total Posts : 135
   Posted 12/9/2011 7:51 PM (GMT -6)   
Thank you both for your replies. I am going to see my PCP on Monday and tell him to get me started on IV antibiotics immediately. Ceftriaxone (Rocephin), right?

But for how long?

And as I mentioned before, I am going to get an appointment with an LLMD.

scorp7
Regular Member


Date Joined Jul 2011
Total Posts : 205
   Posted 12/9/2011 9:04 PM (GMT -6)   
I have a recent infection as well - Apri 2011.  The lyme has also manifested itself in my brain and the majority of my symptoms are neuro for sure.  I wasnt treated for 2 months then in July I got on Doxy then they added Biaxin.  The lyme got better and I was treated for babesia.  Unfortunately the abx for babs was affecting my white blood cells.  My kidneys and liver were hurting me.  I then went to a natural practitioner who did an electro dermal screening.  She was able to determine what all co infections I had.  There are many.  I started on some homeopathy medicines and began feeling better and stopped the abx. 
My neuro is so much better but not all gone.  It was primarily diagnosed based on all my neuro symptoms.  I hardly had any issues at all with the rest of my body.  It was all in my head area.
 
I recently purchased a doug coil machine and I have been doing the frequency therapy and doing quite well with that.
I forgot to mention that I also have lesions on my brain.  The dr said they are lyme lesions most likely and suggested someday I might want to do iv rocephin.  I opted not to do ivs for a number of reasons.  Some have done it and its been sucessful while others have done ivs and just had it relapse so I guess it is well worth researching beforehand.  Everybody is so different and treatment varies alot from one to another.
 
As of now I am doing so well that any abx and ivs are not in my future.  If I stop progressing I may have to change that in the  but for now I am continuing with the coiling treatment.
 
 Many things work and many things don't so it's trial and error for all of us.
Good luck to you regardless of how you choose to treat. :-)

borderlyme
Forum Moderator


Date Joined Jul 2011
Total Posts : 1347
   Posted 12/9/2011 11:43 PM (GMT -6)   
I think it honestly depends on the doctor. My LLMD said that because my brain scans are normal, I don't have neuro lyme, even though I have so many neurological symptoms. It's possible that those are all due to neurotoxins...but I mean I don't know if anyone knows anything for sure anymore...medicine is a lot of theory. So many factors can cause neurological symptoms...so it's pretty hard to tell what's what.

Obviously there's something wrong...my advice is to be as thorough and aggressive as you can. Make sure you get tested for co-infections, for viral infections, vitamin deficiencies - the works.

I'm not sure if you're going through insurance or not, but usually insurance companies will require a CDC positive western blot for Lyme to cover IV antibiotics...so that might be a factor you want to consider...

Good luck!!

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 14746
   Posted 12/10/2011 3:02 PM (GMT -6)   
IN order to help us know the difference between Neurological Lyme and some neurologic symptoms that can accompany Lyme Disease, this may be helpful:
columbia-lyme.org/patients/ld_lyme_symptoms.html

As for what the treatment is for Neuro Lyme, that's as varied as there are LLMD's! Each has their own preferred methods of dealing with the infections. For something you can 'present' to your doc, why not use the same treatment suggestions that ILADS (International Lyme and Associated Diseases Society) suggest? Dr. Joseph Burrascano's "Advanced Topics in Lyme Disease".

Here is a link to that paper:
betterhealthguy.com/joomla/images/stories/PDF/lymdxrx2008-october.pdf

Another thing you can do if your doc is interested - there are places your doc can go and earn those continuing education credits that they have to have and learn more about these TBI's (Tick-borne infections).

www.ilads.org/lyme_programs/lyme_training.html

And here's the other one;

www.turnthecorner.org/content/physicians-training-program

I hope this helps a bit!!
Co-Moderator, Lyme Disease ;)

Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List"

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

I break up my post because my eyes have been effected by TBI's as well, making long paragraphs very hard to read.
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