posted
I haven't been diagnosed yet but I think I might have Lyme. Does everyone on this board have it (been diagnosed) and did treatment cure you??? Or what has the journey been like?? Thanks
Posts: 3 | From California | Registered: Jul 2011
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
I have had lyme 20+ years or longer, only dx in Oct. of last yr. was told I had fibromyalgia and CFIDS so believed that for 12 years and when I started getting worse and they were ruling out MS is when I go my lyme dx.
No, I am not cured but working on it.. Then I will hit a few bumps in the road and just give up which please don't ever do.
I am a poor example of following doctors orders to 100%.. So I am still have many bad days.
Its a hard roller coaster ride and many do get well. I am 69 yrs old so trying for just some improvement.
What are your symptoms?
Good luck and listen to your doctor and the wise people here.
Posts: 1058 | From VA | Registered: Oct 2010
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posted
It generally depends on how long people have had Lyme - if caught quickly, like within the first month, it's easier to stop.
But past that time, it takes finding the right combo of antibiotics and other treatments to manage the illness. Most are just glad to get symptom improvement so we can function better.
So that will be the key for you - if you have Lyme, to find what works for you. It's best to work with a very good Lyme doctor.
Treatment happens in three categories: kill/deter the organism, detox and fortify the body. That 3rd category is vast!
You can study here on Lymenet - you can use the Search function at the top of the page to type in any word or phrase and read the archived threads. I call it going to Lyme school!
We have support groups throughout the state listed at the left here with Support Groups. I have one in San Francisco, if you're anywhere near here.
You can also join the California Lyme Disease Association (CALDA) at www.lymedisease.org and receive the quarterly newsletter, the Lyme Times.
Posts: 13116 | From San Francisco | Registered: May 2006
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
Yes, diagnosed with Lyme, babs and bart.
Pretty much at 90% most days. At 51 yrs old, I would hope I can get to 99%. I have probably had lyme since I was a child. Not sure about coinfections, I think those came 5 yrs ago.
I stay on the boards to learn more and to help others when I can.
One of my biggest wonders is the absolute refusal of infectious disease doctors to own up to this disease. So many people suffer needlessly.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I had undiagnosed lyme disease for at least 10 years before a doctor figured out what was wrong.
I had lyme, babesiosis, and bartonella. It is typical to have all 3.
In April, it was 6 years since I completed my treatment, and I am still symptom free, enjoying my life.
The doc is the key to getting rid of this disease. Can't emphasize that enough. That's what I learned through my journey.
You start out with whatever doc you can find. Then, the more you learn about the disease, the better able you are to pick a good doctor.
Lots of doctors treat lyme disease, but only a few know enough to get rid of it for a person.
I suggest everyone study the Burrascano Lyme Treatment Guidelines and then look for a doc who follows the Burrascano protocol. That is how I and my friends all got well.
Don't make insurance, or location, or cost the primary factor in selecting a doctor. Make it expertise and the Burrascano protocol. The lyme support groups (see "Support Groups" on left side of page) can give you info about lyme doctors, and so can the people here.
Learn about the disease and then learn who the good doctors are and wait your turn to see one. Then, be totally obedient to what the doctor tells you to do. No drinking, no smoking, etc.
I wish you the best.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I'm grateful that I don't drink or smoke. I can't imagine having to deal with addiction on top of treating the Lyme. For those of you who are, I have major respect for what you're going through. wow
-------------------- IgM: [18++,31+++,34++,41++,83-93+] [39 IND] IgG: [41 IND] Positive according to IGeneX. Negative according to CDC. Negative for co-infections. Currently treating for Lyme, Bartonella, Babesia Posts: 225 | From Minnesota | Registered: May 2011
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posted
There is a lot of good advice above. Most people on the forum have active TBDs, but some dedicated people hang around to give advice, which I have tried to do on occasion.
Unfortunately, LD is one of those diseases that affects people differently. Also, different treatment works (or doesn't work) for different people depending on the person, the length of time of infection, and the strain of LD or other TBDs they may have.
I had active LD and bart for at least 10 years before I thought I was cured after 2 years of abxs. The last 6 months of Tindamax and cipro worked the best for me and got me to 100% for about a year.
I was doing well until a few months ago when I got a bad cold and URI. My doc gave me a z-pak. About 2 weeks after the z-pak, I started to feel the old LD/bart symptoms coming back, i.e. sore feet and stiff hands and forearms.
I went back on tindamax and cipro and started feeling better within a week. I plan to stay on them for a few months and then stop to see if the symptoms come back.
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