LymeNet Flash: Old Lymie needs new info

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»	LymeNet Flash » Questions and Discussion » Medical Questions » Old Lymie needs new info

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Topic: Old Lymie needs new info

Lyme n Bean
LymeNet Contributor
Member # 139

posted

Ok it's back to lyme school for me. Lyme has been only a bad memory for me over the past 2 years. I returned from vacation with a cold and then the week before Christmas I had a relapse. During my 4 years of treatment I had multiple relapse episodes and this was just like all the others. A bad dose of vertigo which lasted for a day and the fatigue and rubber limbs feeling. Then the anxiety and sleep disorders (I can not sleep). I now feel like my entire body is vibratiing. Just a few weeks ago I was riding my bike 150 miles a week, today I could not complete 30 minutes on a stationary bike.
I know alot has changed, with treatment etc. Please provide usefull info to and old dog who needs a few new tricks. I am back on Suprax which was my wonder drug and now is only available in Canada.

PLEASE REVIW MY OTHER POST I'M LOOKING FOR MY OLD LLMD FROM EGG HARBOR CITY NJ

THANKS IN ADVACE FOR YOUR SUPPORT JP

Posts: 123 | From Swainton, NJ USA | Registered: Oct 2000 | IP: Logged |

tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159

posted

Hi Lyme n Bean,

I don't know if you've gotten your question answered but am bumping this back up to page one.

My Lyme treatment knowledge is two+ years old. I'm sure someone more up-to-date can help.

Posts: 2098 | From San Diego, CA, USA | Registered: Sep 2002 | IP: Logged |

dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749

posted

Hi Lyme n Bean,

Although I have no experience with it myself, several people on Lymenet seem to be on Ketek, which I think if new-ish. Maybe you want to search under that.

I think that Dr. B's (2002) guidelines are still very valid - they are here:
http://www.ilads.org/burrascano_1102.html

Then someone also posted this link the other day: http://www.guideline.gov/summary/summary.aspx?ss=15&doc_id=4836&nbr=3481#s21
This is the newest ILADS guidelines from 2004.

Hopefully someone will be along to give you some great info soon.

I'm sorry about your relapse, I hope it will be short-lived.

How long were you treated originally, and how well would you say you got (percentage-wise), and how long did you remain well before relapse?

DLL

Posts: 2824 | From The Back of Beyond | Registered: Oct 2003 | IP: Logged |

Lyme n Bean
LymeNet Contributor
Member # 139

posted

I was bit and infected in 1990, I had a bulls eye and flu like symtoms but did not know it was lyme at that time. I had 7 years of normal health. Then I began having 30 day periods of vertigo with several months of normal health between them. I started seeing MD's and was tested for everything all negative including lyme. Then in 1999 I got vertigo again in the summer and it would not go away. I then began losing weight 30 lbs in 30 days. I started having hot flashes and night sweats that would soak the bed. Then fatigue that would not let me leave the house. After extensive testing My MD said I was in need of mental help and FIRED ME. She contacted my insurance company and said she no longer wanted me as a patient. I was lost an began to belive i was going crazy. Then I met a friend who had recently been treated for lyme. He said it sounded like thats what i was suffering from. I contacted a LLMD and within 30 days had PCR positive and was diagnosed with late stage neuro lyme.
I started with IV rocefin and within 2 weeks felt like my old self. I was on a 60 day course, on the 45 day I had a severe relape that made me feel worse then ever before treatment. The LLMD the added another 60 day of roecefin where I showed little improvement. Then add 60 day of Vancomycin and rocefin where I did not think I was going to live. Then after 6 months the LLMD wanted to pull the PICC. He said I would need to go off ABX for 60 days and be retested. (I later foung out this was to make the insurance company happy)I then found another LLMD who put me on Orals 1000mg ceftin and 500mg biaxin for 6 months. I then began feeling better but with regular relapses. I then swithed to Suprax and made giant strides. I stopped abx approx 2 years later and LLMD said I may feel flares from time to time and I should treat with ABX to suppress the flare this worked well and I returned to normal health and lifestyle until a few weeks ago with a bad relapse. So I an not sure where i am in this long strange trip. I have not seen my LLMD in 18 months and She seen to have fallen off the planet so I must look for a new one. I live in Southern NJ and I'm looking for Suggestions. Good Health JP

Posts: 123 | From Swainton, NJ USA | Registered: Oct 2000 | IP: Logged |

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