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Old 10-27-2007, 07:36 PM   #1
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Location: Oxford, CT.
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Mepmom HB User
So frustrated

for about 9 weeks I have been getting joint aches, pains, swelling, fatigue, muscle pain, alternating between chills and sweats now and them and overall blah. I have had two lyme tests w/ western Blot and every arthritis test known to man. Of course, all have come back fine. I was on Doxycycline the first time I had the test done and I felt better on it. But now, since both tests came back neg, they wont treat me for it now.

Now my dr is trying to tie my symptoms to a tattoo I got two months ago and making me get Hepatitis tests. I will get those results monday.
The annoying part is, I remember I saw a bullseye mark and I remember thatthe symptoms came a few days after I noticed the bite. No one believes me and now they are grasping at straws. Meanwhile, I wake up so stiff and sore and I am tired all day with no relief! What can I do
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Old 10-28-2007, 06:35 AM   #2
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PollyGirl HB User
Re: So frustrated

Best wishes to you Mepmom..........I am now going on 12 years since my first initial outbreak of the rash and symptoms. No one even mentioned Lyme to me back that and during the 12 years. I had a positive Lyme test a year and half ago with no treatment and to be honest, I think this is the first Lyme test that was ever ordered.

I am trying to obtain my records from the past 12 years to piece my puzzle with. It is very frustrating to say the least.

 
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Old 10-28-2007, 08:33 AM   #3
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Re: So frustrated

what is irritating is how they wont treat me, instead its blood test after blood test and now they have me worrying over this weekend about Hepatitis! GEEZ!
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Old 10-28-2007, 09:27 AM   #4
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spookiej HB User
Re: So frustrated

I agree with you Doctors have no clue how they stress people out.
Mine told me I would be fine in a couple of days and I feel worse everyday.
I have been reading on this board and found out more info than either she knows or wanted to share with me. Good luck

 
Old 10-28-2007, 10:35 AM   #5
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Re: So frustrated

Hi Mepmom, welcome to the board!

I am sorry you are feeling bad. 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 kowledgeable 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 also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many 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.

Which lab did your Western Blot? The CDC requires a large number of bands to show for it to be considered positive; however many people who have Lyme do not have this many bands show. Lyme doctors often focus on which bands show, some are specific for Lyme. It is important to be tested by a Lyme reputable lab. IgeneX has more sensitive tests and list more bands on the Western Blot. Testing should be used as an aid in diagnosis not solely for diagnosis. A lyme knowledgeable doctor will not rely solely on test results to diagnose tick-borne illnesses.

If you need a doctor recommendation, let me know. There is one in Wilton who comes highly recommended.

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 (on-line). 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.

Hang in there okay? If you have Lyme disease, good help is available.

 
Old 10-28-2007, 10:41 AM   #6
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Re: So frustrated

along with hep. panel...they did order the other tick brne illnesses as well..I will know more Monday..thanks
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Old 10-28-2007, 10:45 AM   #7
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Re: So frustrated

Hi Mepmom. Somehow I missed that you said you had a bulls-eye rash. When was this?

Although only about 50% of people who have Lyme ever get a rash, a bullseye rash is a definite sign of Lyme. The rash alone merits treatment. If your rash comes back, sometimes they do, it is important to get photos of it for documentation. Place something near it, like a coin or ruler, before photographing to give it size definition. Then you have evidence of it if needed later.

Do you know which lab did the testing for tick-borne illnesses?

Do you have copies of your previous tests?

When you were on Doxy, what dose did you take and how long did you take it?

Last edited by ticker; 10-28-2007 at 10:48 AM.

 
Old 10-28-2007, 01:01 PM   #8
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MichiganLymie HB User
Re: So frustrated

Mepmom, If your Dr. doesn't solve this mistory I think it would be very important that you see a Lyme Literate Medical Dr. (LLMD). Most Drs. do not understand this illness very well. Go on the Lyme Disease Association website and do a Dr. Referral for your area. Since you are in CT you should be able to find someone who really understands Lyme.

I live in the Detroit area and got Lyme while traveling. No one around here believed me and I had 2 negative Western Blot tests. After I became almost totally disabled I went on the Lyme Disease Association website and found a Dr. 2 hours away. He did another Western Blot test and sent it to a lab in CA that specializes in tickborne illnesses (Igenex). It came back positive! He put me on 7 weeks of antibiotics immediately - based on my symptoms - even before the test came back. Now one year later I have to be on antibiotics again. That is because the Drs. around here didn't diagnose me for 6 months which allowed the Lyme bug to really take hold.

Anyways, good luck and let me know if you have any questions.

 
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