Question for you with neurological lyme

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Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 1/4/2009 2:31 PM (GMT -7)   
I read on a web site today that neurological lyme is treated with iv-antibiotics only. I know I have read here that some of you have relieved your neurological symptoms with oral antibiotics. Where I do NOT have a LLMD, I wanted to ask all of you with neurological symptoms about your success with abx. Was it with IV only??  Thanks in advance-  D

jennie48
Regular Member


Date Joined Sep 2008
Total Posts : 293
   Posted 1/4/2009 9:23 PM (GMT -7)   
hi Dowa...my LLMD gave me Cefdinir with my doxy to help me...cause i was studdering and had brain fog and forgetful and emotional...i noticed a big difference with the combination of drugs and i am happy with it...but i also messed up my meds and combined drinking with it and now i took a step back...but also i am on celexa which helps me with my anxiety more than with my depression...hope this helped....jennie :0)
"I will not let Lyme controll my life i will controll my own life"
lyme since June 08
meds-zithromax 500mg one a day/ 1  month // Plaquenil 200mg twice a day/ 1 month
starting 10/3 doxy100mg // omnicef 300mg
 
ADHD/anxiety/depression// celexa 20mg


Jeminij
Veteran Member


Date Joined Dec 2005
Total Posts : 1336
   Posted 1/5/2009 10:11 AM (GMT -7)   
My lyme was late stage neuro when I was finally diagnosed. I went on oral abx and got better. I never did IV abx so that is not the case as you have read. It all depends on the doctor treating you, but you can get through it with oral abx. It just can take a long time, but they do work.

nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 1/5/2009 11:34 AM (GMT -7)   
I have improvement with oral abx but still have memory problems and brain fog. It was worse before. What are the drugs you are using Jeminij and others who may respond? I took doxy for two months, then Ketek for 2 months, two weeks and one week (herbs between) and now doxy again.

Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 1/7/2009 8:25 PM (GMT -7)   
my lyme was so badly in my head. but i did not get any relief from oral abx, like from the german dr. i got so much worse. but now they are giving me all sorts of stuff through my port, and abx too, and man it was all the difference in the world.
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


lymewarrior
New Member


Date Joined Apr 2005
Total Posts : 19
   Posted 1/7/2009 8:34 PM (GMT -7)   
I was diagnosed in April 2004 after having the disease for roughly 7 yrs.  I was a mess, of course diagnosed with everyhting else under the sun.  When I finally was diagnosed, I took 2 oral antibiotics, but after 5 months I did 4 penicillin shots a week until January 2005.  hat did it for me.   All along taking Levaquin.  It was miraculous.  Never did the IV.  I continued on oral antibiotics for another 18 months after that.  I have been med free since and am doing very well.  Still have a few neuro residuals like severe headache, but compared to how I was, I am great.

gamwce
Regular Member


Date Joined Dec 2008
Total Posts : 20
   Posted 1/8/2009 4:02 AM (GMT -7)   

Dowa,

I did Doxy for 4 weeks with no change I kept getting worse. Mine is now in my spine I have no use of my arm anymore and the pain is horrible. started having blurred vision and having problems with words i know what to say just cant get the though process done. I was put in the hospital over the weekend because it caused me to have a rapped heart rate that felt like a heart attack.

I now have a picc line in and have been on IV treatment for 5 days. To soon to tell though.  Does anyone know if the Rocephin making me sick. every day I leave the hospital I'm sick to my stomach for a few hours. Not sure if its the med or not.


GAMWCE


bcaring
Regular Member


Date Joined Feb 2006
Total Posts : 346
   Posted 1/8/2009 6:08 AM (GMT -7)   
Hi Dowa,

You already know my story - probably had lyme for at least 8 - 10 years or maybe longer before I crashed. Many neuro symptoms - stuttering, memory and cognitive changes, bad SPECT scan, emotional changes, muscle spasms, headaches, difficulty walking, and so many more.
Started with orals - a little improvement but not much. Long IV treatment and I am pretty good. I see the doctor next week and we will probably remove the PICC and start orals.

I didn't know that it would be as long as it has been but I had a tough case of babesia and bartonella in the past - that made it take longer.

I know that IV's may not be the direction you want to go so I think that IF you are going to do antibiotics (and I think you should seriously consider it because I have been concerned about you and the questions you have asked indicate that you may have neruoborreliosis) start with the orals.

Maire's port is nice (no bandage changes, showers are easier) but you have to have a nurse administer the the drug - you can't do it yourself.

Have you found a good doctor yet?
Take care and I think of you.
bcaring
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