posted
I am pretty frustrated and am now wondering if perhaps I have treatment resistant Lyme. I was undiagnosed and untreated for 2+ years, I have CNS Lyme and in the last 14 months I have been on numerous protocols including but not limited to Ketek, Biaxin and IV Rocephin and various herbs. Although I don't think I've gotten any worse I have not gotten any better. It seems the meds suppress my symptoms to one degree or another but it's not really hitting the Lyme and making me better. I don't know what to do next. This is what I've done so far: 3 months tetracycline 3 or 4 months biaxin/plaq 2 months minocycline 2 months Ketek/Ceftin 7 weeks Rocephin
Posts: 98 | From cambridge ma | Registered: Oct 2005
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posted
Did any of the above improve your symptoms?? Maybe you didn't take the "best" one long enough??
Maybe you have babesia?? That is often the reason people do not get well from Lyme disease.
Don't rely on tests. Find a dr who will TREAT you for babesia. If you don't have it, then nothing lost.
If you do...You'll get well! It's worth a try!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
SOmetimes if you are sick a long time or very sick you need longterm treatment or longterm IV.
Let me tell you 3 stories.
1. K in our local group, sick 9 years pre abx. diagnosed CFS & fibromyalgia. 1 year orals, not much progress, put on IV Rocephin. She was on pain meds around the clock more than ANYONE I have ever known including hardcore addicts and she was STILL in agony 24 hours a day. Once she was dirving us to a Lyme group and she was dirving ALL over the road and I asked what she was on and she said, "Morphine, vicodin, oxycontin..." whish reminds me of that other thread on here!!!!!!! ALL AT THE SAME TIME! She shoulda been dead! At one year on Rocephin called me, said, "I am NEVER going to get well." Was on IV 2 years, was in full remission last few months, has been off and in full remission for 7+ YEARS now. Her husband and child are also in full remission and they got there on orals. Sh is non stop doing hiking trips travleing sports non-stop- no time for Lyme groups anymore!
2. A. in our local group. Began diagnosis of CFS ended u p MS, diagnosed MS multiple brain lesions. 7 brain lesions healed on a year and a half of IV Rocephin, still chronic but on orals and having a great time in life. But at 9 months of IV she was not changed!!! She needed 18 months!!!!
3. ME. one year orals just got worse & worse. SIX months IV Rocephin WORSE and WOSREW! Then between months 7-9 LIFE LIFE LIFE and I have been 99.9% happily ever after for 6 years + now*)!*)! I needed 9 months (actually if I had had ten I owuld probably be i n full remission myself but no more $!) was worth every penny though!
And if I had not had the tick bite I would NEVER NEVER have believed it was Lyme!! NEVER@!!! Because I did NOT repsond to orals for a WHOLE YEAR! But just got weaker & weaker & weaker & sicker & sicker & sicker!!!!!!!!!!!!!!!!!!!!
But some of us are sicker than others. And need more treatment.
Best wishes, Sarah
p.s. I will never forget when K called me and said, "Sarah, I am NEVER going to get well again!" and now she has not taken a pain pill OR an antibiotic for over 7 years and is in perfect health!!!!!!!!!!!!!!!!!!!!!!!!! But she meant it. She didn't believe anymore but got well anyway-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Hi Nicolette,
I've been in treatment far longer than you and had good improvement at first, but then got worse.
When you say CNS Lyme, it sounds like me - lots of CNS symptoms, some very bizarre.
My LLMD and I have been thinking more and more that Bartonella is a huge issue for me.
The famous Dr. B's DVD talked about patients who had been on extensive Lyme treatment and still had CNS symptoms that were far out of proportion to other symptoms, he suspected a Bartonella-like organism.
I'm having lots of problems with Bartonella medications so I can hope I can treat it. But you might ask your LLMD about Bartonella.
My Bart test did not turn positive until I began Bart treatment.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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