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  • 10 years after treatment - possible recurrence???

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    Old 05-08-2007, 10:10 AM   #1
    ljt77
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    Question 10 years after treatment - possible recurrence???

    I am sitting here feeling like I have been punched in the gut...OK here's the story:

    About 10 years ago I was diagnosed clinically with Lyme, only a few days after the appearance of a bullseye rash and flu symptoms. I was given a three week course of oral antibiotics (doxocyclin sp?) and considered "cured" of Lyme.

    Ever since I have had a range of symptoms which, I have always thought way in the back of my mind, might mean the Lyme was still in my system. I haven't ever approached my doctor though because I wanted to believe that I had in fact been cured. The symptoms up until this point have been:

    TMJ disorder
    Irritable Bowel / constipation
    neck pain and stiffness
    migraine headaches with classic aura
    joint pain in ankle (which I fractured in 1997)
    pain behind knee
    sensitivity to noise
    fuzzy brain
    short term memory loss (really getting worse lately)
    heavy, painful menstrual periods
    PMDD (premenstrual dysphoric disorder)

    So all this time I have thought that I had a lot of discreet symptoms and even though I always suspected a Lyme association, I put it out of my mind. Then, over the last few weeks, my hands and feet started to tingle, like they're "asleep" all the time. It goes up my forearm to my elbow in my right arm, but is less painful in my left. My feet are usually only tingly in the morning.

    I went to my primary doctor this morning expecting her to say carpal tunnel and the first thing she said was LYME! So I told her my history and she is thinking either it's a recurrence or a new infection.

    Other ideas she had were
    Rhuemetoid arthritis, vitamin B12 deficiency, magnesium deficiency, MS, thyroid, and she hasn't completely ruled out carpal tunnel although she's wary on that one.

    I am, needless to say, somewhat freaked out by the idea that my nagging suspicion could turn out to be true...and scared that even if it is the test will be negative...and also wanting to know, because a lot of the stuff on the internet seems to speak to late or chronic lyme in those who never had treatment whether having been treated with the antibiotics at the time means it could only be a new infection...

    I know I have a ton of questions and I should probably wait to get my results but if anyone could answer some of my questions I would be very grateful.

    Last edited by ljt77; 05-08-2007 at 10:11 AM.

     
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    Old 05-08-2007, 03:25 PM   #2
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    Re: 10 years after treatment - possible recurrence???

    Hi ljturner. I am sorry you are sick. Three weeks of treatment is never long enough for Lyme. You likely were not treated long enough and/or aggressively enough initially.

    Below is a Lyme symptom list. You can have any combination of symptoms.

    Unexplained fevers, sweats, chills, or flushing
    Unexplained weight change--loss or gain
    Fatigue, tiredness, poor stamina
    Unexplained hair loss
    Swollen glands
    Sore throat
    Testicular pain/pelvic pain
    Unexplained menstrual irregularity
    Unexplained milk production: breast pain
    Irritable bladder or bladder dysfunction
    Sexual dysfunction or loss of libido
    Upset stomach
    Change in bowel function-constipation, diarrhea
    Chest pain or rib soreness
    Shortness of breath, cough
    Heart palpitations, pulse skips, heart block
    Any history of a heart murmur or valve prolapse?
    Joint pain or swelling
    Stiffness of the joints, neck, or back
    Muscle pain or cramps
    Twitching of the face or other muscles
    Headache
    Neck creeks and cracks, neck stiffness, neck pain
    Tingling, numbness, burning or stabbing sensations, shooting pains
    Facial paralysis (Bell's Palsy)
    Eyes/Vision: double, blurry, increased floaters, light sensitivity
    Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
    lncreased motion sickness, vertigo, poor balance
    Lightheadedness, wooziness
    Tremor
    Confusion, difficulty in thinking
    Difficulty with concentration, reading
    Forgetfulness, poor short term memory
    Disorientation: getting lost, going to wrong places
    Difficulty with speech or writing
    Mood swings, irritability, depression
    Disturbed sleep-too much, too little, early awakening
    Exaggerated symptoms or worse hangover from alcohol

    It is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.

    I know of two Lyme doctors in NY who come highly recommended--in Armonk and Hyde Park. Would you like their names?

    It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses. He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.

    I also recommend having your thyroid tested. You should have the Free T3, Free T4 (besides the T3 and T4) and thyroid antibodies tested in addition to the normal panel. They are not usually done but are necessary for a comprehensive view. These are all blood tests. Some people who have Lyme also have a thyroid disorder.

    Hang in there okay? WIht proper treatment, you can get better.

    Last edited by ticker; 05-08-2007 at 03:27 PM.

     
    Old 05-09-2007, 05:07 AM   #3
    ljt77
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    Re: 10 years after treatment - possible recurrence???

    I would appreciate any names of doctors. I was actually impressed (not sure that's the right word but whatever) that my doctor is considering Lyme. As I mentioned I have almost brought it up many times but didn't think I would be taken seriously if I did - not I wish I had because she seems open to the possibility.

    I am trying also to not throw all my eggs into this basket in case it turns out the symptoms aren't Lyme related. But it all seems to point in that direction.

     
    Old 05-09-2007, 06:16 AM   #4
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    Re: 10 years after treatment - possible recurrence???

    Hi ljturner. Is is good that your doctor is aware of Lyme, so many are not.

    The Lyme doctors I know of in NY who come highly recommended are Dr. Kenneth Liegner in Armonk and Dr. Richard Horowitz in Hyde Park. I hope you can see someone soon.

    Keep us posted on your progress okay?

     
    Old 05-10-2007, 05:42 AM   #5
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    Re: 10 years after treatment - possible recurrence???

    Thanks Ticker...still waiting for my blood work results. On the form the nurse did it said "Lyme Screen" - I am thinking there's limited accuracy if they don't do the right test...if it comes back negative what would the next step be?

     
    Old 05-11-2007, 11:23 AM   #6
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    Re: 10 years after treatment - possible recurrence???

    I called my doctors office today and they looked at my chart - I was treated in 1998 with 100 mg of doxicyclene 2X/day for 3 weeks. I had the bulls-eye rash on my thigh and was symptomatic, but the Lyme anto-body titer came back negative. Does this mean anything in terms if the liklihood that I wasn't treated aggreesively enough then?

    Last edited by ljt77; 09-25-2007 at 09:37 AM.

     
    Old 09-25-2007, 09:01 AM   #7
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    Re: 10 years after treatment - possible recurrence???

    I am bring this thread back because I still have questions. Since I last wrote I have had two negative Lyme tests, and was found to be b12 deficient. So I am tasking supplements and that has helped with the tingling in my hands and feet to a degree but not totally. So my doctor sent me to a neurologist and after I described my symptoms the first thing he asked was if I had ever had a lyme test! I said I had but that they came back negative. So he asked if I everhad a spinal tap and I said I hadn't. Should I push my doctor for one or go to a LLMD??????

     
    Old 09-25-2007, 09:32 AM   #8
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    Re: 10 years after treatment - possible recurrence???

    wow, that IS very impressive that your doctor thought of lyme first AND your neurologist too???

    I would go no further, you had the rash, you had the symptoms, 10mg doxy is no where near enough to cure lyme. stop here and stop looking and just accept it. I went 12 years chasing other things after my rash in 95 and treated with 100mg doxy for i think 4 weeks. i got progressively worse over the past 12 years (i did have a "remission" where I felt good, so maybe a recurrence, maybe a re-infection)

    I went to all the best specialists, neurologists, rheumy's at johns hopkins and others, and chasing ALS, MS and all the other wrong diagnoses. no one could help me. the tests are NOT accurate, many people test negative.

    get treated now before you end up like me, I have permanent damage from the arthritis, and possibly nerve damage.

    I have to say I am impressed with your dr and neuro thinking lyme right away. maybe all the media attention lately is paying off!

     
    Old 09-25-2007, 09:38 AM   #9
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    Re: 10 years after treatment - possible recurrence???

    Thanks for your reply - I had to edit my earlier post though, it was 100 mg's of doxicyclin not 10, but I still don't know if that was enough then. I have never had a positive Lyme test either.

     
    Old 09-25-2007, 10:33 AM   #10
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    Re: 10 years after treatment - possible recurrence???

    Hi ljturner. What tests have you had done? No test for Lyme is completely reliable, and results can vary by lab. It is my understanding that the ELISA or titer is the least reliable test and the one most doctors run first.

    From what I understand, spinal taps show Lyme in less than 5% of cases. I do not think a Lyme doctor would order this to test for Lyme.

    In my opinion, the most important thing someone who has or may have Lyme can do is see a Lyme knowledgeable doctor. Besides the two mentioned previously, Dr. Bernard Raxlen in Manhattan is also knowledgeable. He used to be in CT.

     
    Old 09-25-2007, 10:38 AM   #11
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    Re: 10 years after treatment - possible recurrence???

    Honestly I don't know what test they did. They tested me in 1998 when I was initially diagnosed, that was negative so they diagnosed me clinically. My primary has tested me twice in the past six months, both negative. I hadn't realized that the spinal tap wasn't very precise. I thought the neurologist must have asked because it was a better test. If not then I am not sure what to do. The LLMD's don't seem to take insurance so I don't know if that's a possible course for me to take. The first time my primary tested me she said that even though it might come back negative she might go ahead and treat it but then decided not to (or maybe just forgot she said that). Guess I need to call there and see if that is still an option?

     
    Old 09-25-2007, 10:52 AM   #12
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    Re: 10 years after treatment - possible recurrence???

    most LLMDs dont take insurance, and that was one of the reasons I postponed it for so long. i am submitting the claims myself and getitng re-imbursed for most of it. my antibiotics have been completely covered, I have paid about $10 in co-pay for my meds so far.

    seriously, I wish I did this a long time ago. could have prevented a lot of pain and suffering, and money too.

     
    Old 09-27-2007, 06:15 PM   #13
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    Re: 10 years after treatment - possible recurrence???

    Quote:
    Originally Posted by roro View Post
    most LLMDs dont take insurance, and that was one of the reasons I postponed it for so long. i am submitting the claims myself and getitng re-imbursed for most of it. my antibiotics have been completely covered, I have paid about $10 in co-pay for my meds so far.

    seriously, I wish I did this a long time ago. could have prevented a lot of pain and suffering, and money too.
    You are extremely fortunate that your insurance pays most of your costs...mine (Capital BC/BS) pays about 1/4th of the actual cost (their "customary costs" must be from Somalia or something, because I've never seen a doc charge so little as they allow). I pay about 50% of the prescription med cost, and 100% of the supplements/other things the doc puts me on...to the tune of $8000 last year. Probably close to that again this year.

     
    Old 01-15-2008, 03:19 AM   #14
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    Re: 10 years after treatment - possible recurrence???

    My brother thinks he is infected with Lymes desease after a tick bite whilst on holiday in France. His general practicioner is being very unhelpful even though he has all the symptoms. His test was negative. Can anyone give me the name of a Lymes desease doctor here in the UK which he could see ASAP.
    He is now feeling very poorly.

     
    Old 01-15-2008, 03:53 AM   #15
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    Re: 10 years after treatment - possible recurrence???

    Collognes, i think this is all we have...

    [url]http://www.healthboards.com/boards/showthread.php?t=562817[/url]

     
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