posted
I am curious what people think about being cured. Say for example you had the CDC guideline for treatment based on a positive diagnosis and have some symptoms that come and go but never linger and are not debiliating and could just be from normal stress, fatigue, sports injuries, etc. How far do you go to validate that the lyme is gone? How do you ever really know if the blood testing has so many issues - not like you can get tested again and come up negative and assume all is fine. The dilemma is to leave it untreated makes it chronic and hard to get rid of, but to treat it with antibiotics if it is really not there is not good either. So, how do you really know? Who do you believe?
Posts: 749 | From State full of ticks | Registered: Dec 2008
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posted
Number one rule...DO NOT believe cdc.I had all kinds of crazy symptoms for 15 plus yr., diagnosed 10 yrs ago with 4th stage lyme now. If you are having symptoms that come and go you are not cured and better get a better llmd. I personally don't believe in cures unless you see the tick, have it removed and go on abx immediately.
There is criteria most Dr.s use to know if your in remission or not. Has something to do with being symptom free for ...I don't know how long. Sounds to me if your unsure I would not chance it. Eventually it will take you so far down ,{having been there} you won't get back. Just my opinion.
Posts: 161 | From midwest | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Never believe the CDC or IDSA about lyme or any other tick-borne infection. It's very clear they want to remain ignorant in this area.
It is best to find an excellent and experienced ILADS-educated LLMD or LL ND (naturopathic doctor). Lyme and other tick-borne infections are very complex in nature. You need an expert assessment - up close and in person - with a truly lyme literate doctor. -------
ILADS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
I had remitting/relapsing CFS for 7 1/2 years before I was diagnosed with Lyme. I was getting progressively worse with each bout taking more life from me.
Finding both of my LLMD's gave me back my life along with abx treatment. I've been back to work for the last year and a half. I had been on disability for two years prior to that.
Get it treated until you have NO symptoms.
IMO, CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
It's not from normal life that we get all these symptoms. I was told that. I got treated for Lyme, am better now and have none of the symptoms.
If I overdo it, I get tired, but along the lines of a normal person, none of that horrible fatigue like you have with Lyme. No pain. Ever.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
You will know when you are 'cured' or in remission. The disease is not there anymore, that's it.
No symptom, no infection, no inflamation, no pain, no insomnia, no digestive problems, no heart palpitations, no air hunger, no more cramps, no problem with vision, with memory, with fatigue, with anxiety, with tinnitus, with joint pains, back pains, headaches and the list goes on.
If you take nothing and you keep having no symptom for more than 3-4 months, you're probably in remission!
but if despite treatment, you still have symptoms even if all exams tell you you have no more lyme, what to believe? I would believe on your symptoms, not on whatever guideline!
Posts: 6200 | From Brussels | Registered: Oct 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
The IDSA would have you believe that if you have any lingering symptoms that it is just the "aches and pains of daily living". The next thing you know, your symptoms progress into not being able to function. And that has nothing to do with daily living.
If you have any lingering symptoms, you are not cured! Best to treat 3 to 6 months past being symptom free!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I attended a lyme conference this last week, where the famous Dr. B. spoke, and this is what he said about remission.
He spoke about testing CD57 in lyme patients, and a good range is 120-157. Most lyme patients start out in the 20-40 range, and the sickest are lower than that. His statement is that if a patient has CD57 of 120 or more, than they are in remission. This subset of the natural killer cell count is the best indicator of remission.
My take on what he said is that we "may not" ever get rid of all the bacteria or parasites, he doesn't know for sure, but our immune system is able to hold them in check, and we can live healthy lives again.
Posts: 964 | From san diego | Registered: Oct 2009
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posted
nspiker - Thanks for the CD57 info from Dr B, you hear alot of contradictions about that blood test it is nice to have his recent opinion on it.
Posts: 448 | From minnesota | Registered: Feb 2010
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