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Old 01-11-2007, 04:46 PM   #1
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Location: Esmont, VA
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dansch HB User
Lyme returning? How to test

Just joined this board today... hoping you guys can give me some advice.

Back in June of 2006 I contracted Lyme while visiting Nantucket. Never noticed the bullseye, but got really ill a couple of weeks later (103+ fever). Ignored that, just thinking I had the flu, until I got Bell's Palsy. That got me to the doctor's office rather quickly. The doctor put me on steroids to help with the paralysis (went away in a week or so), and was sharp enough to test me for Lyme's. I ended up showing positive and after having a lumbar puncture they determined that it had spread in to my CSF.

I went on IV Rosephen for 3 1/2 weeks and everything cleared up.

Recently I just went through a pretty high-stress couple of weeks, and just started to notice symptoms of Lyme's again (mid-day fatigue that I can't ignore where I just *have* to take a nap, bit of mental fuzziness and lack of focus, etc.).

What, if any, tests can be done to see if Lyme's has returned, or if this is something totally unrelated?

I'm seeing my Doctor next Thursday and would like to be prepared with some info.

Thanks everyone,
-Dan

 
Old 01-11-2007, 06:39 PM   #2
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Location: North Carolina
Posts: 1,247
Pearlscale HB User
Re: Lyme returning? How to test

Dansch
Welcome to the boards.

LLMD's feel that you need to be treated for 2 months past any lyme symptoms. Three and 1/2 wks won't get it. The life cycle of the bacteria is that long. And with the ability that it has to morph forms, dissiminated lyme will not be cured that quickly.

Also, were you tested for co-infections. The tick carries alot more than just lyme in so many cases. I have lyme, babesia, clamadia pneumonia, and probable bart and Erlickiosis.

I would suggest you see a LLMD. There is no way to be sure you are cured. There is no test to prove this.

Listen to your body. If you need a nap, take it. Try to stay stress free.

We're here if you need us.
Prayers......Marsha

 
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Old 01-11-2007, 07:28 PM   #3
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ticker HB Userticker HB Userticker HB Userticker HB Userticker HB User
Re: Lyme returning? How to test

Hi Dan, welcome to the board!

Although a bulls-eye rash is a definite sign of Lyme disease, only about 50% of people who have Lyme ever get a rash. As Pearlscale posted, 3 1/2 weeks of treatment is not long enough for Lyme. Were you given oral antbiotics after the IV? The minimum treatment for an infection caught within two weeks of the bite is six weeks of the proper dose antibiotic. If symptoms are still present, further treatment is warranted. A longer infection needs longer treatment.

People who have Lyme should not take steroids because they can make symptoms much worse.

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. Many people who have Lyme are co-infected, and it may affect
treatment choice and progress. It is important to be tested for these by a Lyme reputable lab also. I believe that Babesiosis is rampant in Nantucket.

It is also important to learn as much as possible. I recommend reading
"Everything You Need To Know about Lyme Disease (2nd edition)" by Karen
Vanderhoof-Forschner and Dr. Joseph Burrascano's treatment guidelines. He is one of the top Lyme doctors in the country, and many Lyme doctors follow his treatment protocols.

If you would like a doctor recommendation, let us know.

 
Old 01-12-2007, 04:57 AM   #4
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dansch HB User
Re: Lyme returning? How to test

Quote:
Originally Posted by Pearlscale
Dansch
LLMD's feel that you need to be treated for 2 months past any lyme symptoms. Three and 1/2 wks won't get it. The life cycle of the bacteria is that long. And with the ability that it has to morph forms, dissiminated lyme will not be cured that quickly.
Well, that sucks. I had hoped that since it had been caught so quickly (3 weeks or so after exposure) that we had nipped it in the bud.

Quote:
Also, were you tested for co-infections. The tick carries alot more than just lyme in so many cases. I have lyme, babesia, clamadia pneumonia, and probable bart and Erlickiosis.
I don't know. I'll definitely ask when I see him next week.

Quote:
I would suggest you see a LLMD. There is no way to be sure you are cured. There is no test to prove this.
I'll see if I can get a recommendation from my GP of a good specialist in the area. Is there a directory somewhere of good Lyme specialists (or just docs with good experience)? I'm right near a large teaching hospital (University of Virginia in Charlottesville, VA) and would hope that there would be someone in the area.

Quote:
Listen to your body. If you need a nap, take it. Try to stay stress free.

We're here if you need us.
Prayers......Marsha
Thanks for all the help. I'll post as things progress.

-Dan

 
Old 01-12-2007, 05:03 AM   #5
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dansch HB User
Re: Lyme returning? How to test

Quote:
People who have Lyme should not take steroids because they can make symptoms much worse.
My doc even mentioned this to me when he prescribed the prednizone (sp?), but at the time half of my face wouldn't move at all and I was more than happy for the trade-off. Within 3 days I regained 95% of the movement in my face.


Quote:
It is also important to learn as much as possible. I recommend reading
"Everything You Need To Know about Lyme Disease (2nd edition)" by Karen
Vanderhoof-Forschner and Dr. Joseph Burrascano's treatment guidelines. He is one of the top Lyme doctors in the country, and many Lyme doctors follow his treatment protocols.
I'll definitely order a copy of the book and try to find a specialist in my area. If you're aware of anyone in Central Virginia (near Charlottesville, Richmond, Blacksburg, Roanoke, etc.) I'd happily take a recommendation.

Thanks,
-Dan

 
Old 01-13-2007, 04:22 PM   #6
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dansch HB User
Re: Lyme returning? How to test

I have a couple more questions for forum members:

I recently took 10 days of doxy (100mg once a day) for something unrelated. Any chance this would have triggered a relapse (as mentioned in my original post, I was also undergoing high-stress at the time - panic attacks, etc.). I've seen a couple of posts here talking about antibiotics possibly triggering relapses, but I was hoping for more detail.

Also, when I spoke with my doctor about this, he said that he wanted me to check in with him in a few days if my symptoms weren't going away and that if they hadn't, he'd schedule me for a spinal tap. I know that they did one when I first was diagnosed via blood tests (it had quickly spread in to my CSF, which is why they put me on IV Rocephin). Any idea what he'd be looking for in my spinal fluid this time? I was under the impression that last time he was looking for antibodies (which obviously would still be present), but I also remember something about proteins or white blood cell counts. Any clue on what they'd be looking for this time? Is this a good way of testing for a relapse?

Thanks again to everyone for the help.

Cheers,
-Dan

 
Old 01-16-2007, 10:26 AM   #7
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Location: Delmarva area
Posts: 728
TINUVIEL HB User
Re: Lyme returning? How to test

Hi Dan,

Quote:
I've seen a couple of posts here talking about antibiotics possibly triggering relapses, but I was hoping for more detail.
Antibiotics do not trigger relapses. They can sometimes produce what is known as a herx-heimer reaction if there are Lyme organisms in the body, either active or dormant. This occurs when the organsisms die off and produce neurotoxins, causing a temporary flare up of existing symptoms or even new symptoms.

Stress, however, can indeed trigger relapse and there have been many reports of this. After disseminated Lyme infection (you had disseminated infection as it had spread into your nervous system), even if it is treated, a certain amount of the Lyme bacteria (Borrelia burgdorferi or Bb) remains in the body. Stress supresses the body's immune response and can allow the Lyme to flare up again.

Quote:
Is this a good way of testing for a relapse?
No, this is one of the worst ways to check for Lyme infections. A negative test does not rule out infection. Less than 7% of infected patients have the Bb cultured from CSF. This test is used to rule out other diseases or disorders, it should NOT be used as a difinitive test for Lyme.

Your best bet is to see a Lyme literate doctor. Be aware that being an infectious disease doctor or a "specialist" is not a guarantee that a doctor is Lyme literate, even if they are affiliated with a major university. The best way to get a referral is through other patients who have had successful treatment with a particular doctor. If you are in Virginia, try contacting the National Capital Area Lyme Disease Association. I cannot post contact information as doing so violates the board rules, but they can give you more information.

 
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