posted
Have had lyme for 3 years now, only been treated for the last year on abx. How long do you wait more than a year to feel better and not experience all these ups and downs or is this normal for only a years treatment. Getting discouraged and others have asked me why I'm not on the Iv treatment, which I don't know alot about and how people get that treatment. I see Dr. D on the Cape . I've been herxing/not feeling well again since July 4th, seems like a long time.
-------------------- MammaChase Posts: 190 | From Bourne, Massachusetts, USA | Registered: May 2004
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Depends on how sick you are!!! & on how appropriately you are being treated-
THE ONLY WAY OUT IS THROUGH!!!!!!!!!!!!
This is not you so don't panic- because I was really really really bad- but my first year in treatment I continued to get worse on orals- they did NOTHING!!!!!!!!!!!!!! NOTHING!!! I got progressively worse with really bad neuro symptoms- Luckily, I *knew* I had lYme- got sick onset with tick bite and rash- otherwise I would have given up- and NEVER believed it WAS Lyme!!! But then I got IV Rocephin and it did nothing for 6 months!!! ANd I was going, "I am dead." Everyone in my family htought I was going to die. I was bedridden. THEN ta da!!! ONE DAY for ONE minute I had no pain. ONE DAY for ONE MINUTE I felt normal as far as balance went. ANd for the first month when things were changing, that 7th month- I kept thinking I was just imagining positive things because then there it would be- unrelenting pain- the falling- the jolting- the choking- the twitching- the vomiting- but then- it began to be more and more and more until I was almost all well- and I HAD no pain anywhere except a few places left- and NO fatigue- and I could walk again- anyway- my experience- yes- it can take YEARS- but now I am running 6 flights of stairs- and enjoying life more than I ever have- and eveyrhting is so good again- and I NEVER believed I would recover to this extent- I never believed it- just don't give up!!!!!!!!!!!
ILADS says it is 1-4 years for chronic Lyme treatment!!!
Make sure you are treated for any co-infections and remember that they too can be seronegative!!!
Take care- Sincerely, Sarah in CA but it is SO worth it*)!!!!!!!!!!!!!!!!!!!!!!!
-------------------- 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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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
I've been in treatment two years now, after 13 years of illness. I am just starting to see enough periods of improvement that I can imagine remission. At one year, I was worse than when I started!
I have only been on orals, though some fairly aggressive protocols. It takes a LOT of persistence, but you CAN see improvement.
I recommend that you actively pursue all aspects of your illness. In addition to the regular Lyme coinfections, for some treating hormone imbalances, nutritional deficiencies, other issues like molds and other cofactors, toxin issues, physical structure issues, all of these can be vitally important to your improvement.
posted
This is my 8th year on ABX, and only in the last couple years have I seen REAL improvement.... It is still coninuing...
For me I had some years of wrong abx treatment that held me back. I had to switch several times with LLMD's and do lots of trials and errors...
Posts: 437 | Registered: Sep 2004
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
I feel compelled to add my story.
I have been fighting this disease for eight years, but only this year have I been seeing an LLMD who knows what he's doing. I wasted a lot of time and energy and just ended up getting worse and worse by taking the wrong drugs and/or wrong doses.
I am herxing so badly I can barely stand it, but I still drag myself to work and try to ignore the pain as much as possible.
I will not give up. I have a lot of living left to do. Hang in there.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Nothing about this disease is easy-
I know exactly what CalfLyme means- about feeling good for a minute and then more minutes--
That very first minute marked a change in my life--
Getting better takes- work - time- reasurch- a good doc- You can do it--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
I have been treated by an llmd for 1 year and 3 months and have improved definitely, but modestly. At this pace it'll take another 2 or 4 years before I am completely well, but I sign up for that any day, feel like the luckiest man on this planet to be improving.
posted
Everyone is different. It took me a year before I felt even the slightest bit of improvement. It took 3 years of antibiotics to get my life back.
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
I didn't make allot of progress with my 1st LLMD. Had to pay the piper, unfortunately, and go to a LLMD who treats Babs. The progress was worth the trouble and money.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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posted
I was ill for 12 years before treatment. Been on abx for 2.5 years and feel tons better, however have a way to go yet. Just this year I've been able to get around more.
It is very up and down and slow going but it does get better IF you're on the right treatments. Working with professionals with lots of lyme experience and a successful track record is key in my opinion. Lots of people want to help, but not everyone can. Lyme is tough to treat.
Hang in there and know it does get better.
Posts: 925 | From California | Registered: Sep 2004
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posted
Thanks everyone for your input, it's just discouraging that I haven't felt well in a long time, I was on biaxin xl and plaquenil and now on tetricycline only and now my newest symptom is my hands and feet are ice cold/no circulation and they are pins & needles all the time and leg spasms have come back which makes it difficult to walk without looking like a stiff mummy. I have Dr. D and hopefully he can cure all!!!
-------------------- MammaChase Posts: 190 | From Bourne, Massachusetts, USA | Registered: May 2004
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