posted
Does anyone know anything about how Lyme disease affects a person after they have had Lyme? I had Lyme for about 3 years and I currently no longer have it. I had a spinal tap done and everything but I am still extremely fatigued daily and I am always aching. I also get migraines. My doctor is now wondering if maybe I have Fibromyalgia. Does anyone know if there is a link between Lyme and Fibromyalgia? How long does it usually take for Lyme symptoms to go away and will they go away? Everyone I have talked to has a different idea about what happens after Lyme. Please help.
Posts: 3 | From Groton, CT | Registered: Feb 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You need to get to a different doctor. A spinal tap is a terrible test for lyme - VERY faulty.
Who told you that you no longer have LYME. Does your doctor use the term "lymes" with an "s" ? This can be a sign that he's not researched or read much about LYME disease.
Also, any doctor who knows you were diagnosed with lyme 3 years ago and wonders if you now might have Fibromyalgia is NOT at all literate about Lyme Disease. Lyme CAUSES Fibromyalgia.
You need to be assessed by a better doctor. Others will come along to tell you more. It's nearly 10 pm here and I have to get my eyes into the dark.
There will soon be some very extensive answers to your questions. There is light at the end of the tunnel. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
you still have lyme. not fibro, keebler is right, you need a new MD a.s.a.p.
-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
You gave us 2 conflicting sentences, kitty: "I had Lyme for about 3 years and I currently no longer have it." and "How long does it usually take for Lyme symptoms to go away and will they go away?"
Lyme symptoms might go away on their own... sometimes for years. That doesn't mean you don't still harbor the disease... only that it's gone dormant. But your pethora of complaints: "still extremely fatigued daily" "always aching" & "migraines" make it sound to me like this Lyme infection- which I assume you were diagnosed with back about 3 years ago- is not really in remission, or even under control. Especially that 1st complaint.. that screams late Lyme to me.
How long were you under treatment for Lyme originally? That might tell all of us here a lot. Posts: 1233 | From Dover, NH | Registered: Sep 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Unfortunately, you are suffering from post moronic doctor syndrome.
I was diagnosed with fibromyalgia and chronic fatigue syndrome and a lot of other conditions when in actuality I had untreated lyme disease for decades. The pain was almost unbearable for the last 10 years prior to treatment. I personally know of many like me. We are told we have to learn to live it.
Standard IDSA (Infectious Disease Society of America) treatment is not long enough or strong enough to deal with lyme disease. Most doctors who are not members of ILADS (International Lyme and Associated Diseases Society) use the IDSA guidelines so you have no doubt been inadequately treated.
It is not unusual to get what we call co-infections from the tick that passes lyme. Some of these infections require an entirely different treatment than lyme disease. If you have an untreated co-infection, it is much more difficult to get lyme under control. Doctors who follow IDSA protocols do not check for most co-infections.
You need an ILADS doctor. You will often hear them referred to as LLMD's (Lyme Literate Medical Doctors). Most have extensive training in TBI's (Tick Borne Illnesses) and can give you proper testing and clinical evaluation for lyme disease and co-infections. Testing for most of these pathogens is poor at best. http://www.ilads.org/
A great book that you can read that helps to understand the situation with lyme disease is "Cure Unknown". Written by a Science Journalist who is senior editor for Discover Magazine. She and her whole family faced lyme disease. The book covers a lot, history, science and her personal story and a few other personal stories.
Best wishes, Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I would have to agree with everyone else. You still have LYME disease. You need to find yourself a good LLMD (Seeking a Doctor) and get an appt asap. If treated most people will go into remission and be symptom free. Maybe not forever but hopefully.
If you initial treatment for Lyme was like a month or something that is not long enough. LLMDs suggest treating for 2-3 months AFTER the LAST symptom has gone. So obviously you weren't treated long enough if you are still experiencing symptoms.
And if your current Doc is not a LLMD you will get nowhere with them. They will not continue to treat you for Lyme. They will test you you have "Post Lyme Syndrome" and there is nothing they can do about it. That's crap. Good Luck to you
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