so frustrated.

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New Member

Date Joined Feb 2009
Total Posts : 1
   Posted 2/22/2009 10:32 PM (GMT -6)   
I was diagnosed with lyme disease when I was 12. I woke up one morning and couldn't walk, my hip ached, my head pounded, and I was always tired. The doctor tested me, just in case, for lyme and the results were positive. I was treated with 3 weeks of antibiotics and when the pain didn't go away, I repeated the treatment, the pain didn't go away and they decided that the lyme disease wasn't the cause of my symptoms, just a red herring. The pain got worse and I started having similar symptoms in my big toe and lower back, which led them to diagnose me with rheumatoid arthritis, then they said it was fibromyalgia. In the end, I started taking pain pills and stimulants for the fatigue.

For the next 10 years, I had bouts of the same pain, nothing to bad. I should also note that during this time I was diagnosed with manic depression, then just regular depression, add..etc.etc. I also had neuropsych testing that showed I had a really weak grip and poor motor skills, and that the difference between my verbal and spatial reasoning skills was so great that I needed to see a neurologist. The neurologist said thats who i was, i was born that way, and there was nothing wrong. Also, I had bouts of extreme weakness, but nothing so debilatating.

Then, a few months ago, my symptoms flared up again with a vengeance, I was bed-ridden, so tired I called home and asked my parents to come to NY and take me to the doctor. I also started having visual hallucinations, not full blown, but blotches of light, black specs. The area AROUND my heart aches and my stomach is so messed up that the pain often delibitates me. I ended up going back home and going to see my phsyical therapist, who remembered that my hip pain etc. mimicked when i had lyme disease. My regular Dr. didn't think so, but, because my mom was so pushy, she agreed to do the labs.

The labs came back positive. I was so relieved, I thought finally an end to all of this may be in sight. But my Dr., who is great and admitted she wasn't sure what to make of the results, contacted several other physicians, and they concluded that it was a false positive. WHAT? how does this make any sense. I have the symptoms, my test came back positive. Now I have to wait two weeks, and get my blood tested again just to make sure and then wait two weeks to get the results back. And if they come back positive again, I'll be given oral antibiotics again for 3 weeks. If it didn't work the first time, why would it work 10 years later.

I get not wanting to give me antibiotics if i don't really neeed them, but now I have to suffer another month until they even will consider the possibility that I still have Lyme disease.

Maybe they are right and I don't, I'm not a doctor. But i know I'm sick and I'm just so confused!!!! please help

Regular Member

Date Joined Apr 2008
Total Posts : 266
   Posted 2/22/2009 10:53 PM (GMT -6)   
Hello MZQ, welcome. You sound like you've had quite the ride. The tests for lyme are horrible and if you don't see an llmd you will not be treated correctly. I believe you've still got it and your right 3 weeks of abx won't do anything. Can you find an llmd? Someone on here could get you some names. Also, some of your symptoms sound like bartonella which is a coinfection you can get from a tick.

As far as not being a doctor, you are your best advocate and you know when something is wrong. I have very little faith in doctors anymore and I think you would be smart to seek a lyme knowledgable doctor. With the right treatment you can get your life back.

Regular Member

Date Joined Jan 2009
Total Posts : 296
   Posted 2/22/2009 11:21 PM (GMT -6)   
Regardless of what your doctors tell you, you never got rid of the initial infection. Every single symptom you've listed here can be attributed to Lyme. Many of them can also be attributed to coinfections. It's hard to say for sure because the symptoms overlap. You need to find an LLMD who will give you more thorough testing and will treat you based on a clinical diagnosis. The tests are virtually worthless.

Martha's Vineyard
Veteran Member

Date Joined Jul 2008
Total Posts : 1119
   Posted 2/28/2009 7:16 PM (GMT -6)   
Hey girl...
We hear you! It is all one big load of crap...:>)
You have all of the same stuff that I did and I totally understand how frustering it is. I would ask your parents if they would put your ass on a plane to envita in scottsdale Az. and get yourself into treatment for 6 weeks.
And if you get a no.....then we will go from there.
It is a big run around. It is all very frustering. And everyone on here has had the same thing happen to you are in the rigth place to knock on some doors and check out your options.
I think it is time that you get your life back. I finally got mine back.
You are welcome to tap on me and ask me about what my treatment was and is.
It can be confusing. Many on here have had different treatments. And everyone is different. The main thing that you need to know is that...because of the lyme infection that you got, your immune system has been effected. So that is why all of these different things will be going on with you. They are all related to your defeated immune system. And the good news is that once you get yours up and running..all of these things will go away. Your immune system just needs to be put through the car wash girl...:>)
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."

Martha's Vineyard
Veteran Member

Date Joined Jul 2008
Total Posts : 1119
   Posted 2/28/2009 7:22 PM (GMT -6)   
Oh yeah..I forgot..
My daughter has the floaters..she says it looks like it is snowing. I had the black spots. I went to Germany in March and April to try to find a cure...and go to Italy for my last time..I would rather die in
Anyways. I would think that I saw a huge rat running across the floor. I was in a resturant with my pounding head...and then...ahhhhhhhhhhh, pulling my feet up and looking down. My date...was like...ahhhh you are scaring me.
Well...lucky for me he liked blonds and put up with
But it does get very annoying and it does make you feel freaked out...and it does go away when you get better!
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."

Veteran Member

Date Joined Feb 2003
Total Posts : 9208
   Posted 2/28/2009 9:26 PM (GMT -6)   

Hi MZQ1005, welcome to the board. 

I am sorry you have been sick for so long.  It sounds like you were not treated long enough and aggressively enough initially.  Unfortunately, many doctors do not understand Lyme.  You have symptoms and a positive test, you need to be treated.

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
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
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

When Lyme disease is a possibility, it is very important to see a knowledgeable doctor.  Many doctors 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.  Have you been tested for these?

Ibf you need a doctor recommendation, let us know.  

It is also important to learn as much as you can.  I reommend reading Dr. Burrascano's Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses at  Many Lyme doctors follow his treatment guidelines.  I also recommend the books "Everything You Need To Know about Lyme Disease" by Karen Vanderhoof-Forschner and "The Lyme Disease Solution" by Kenneth B. Singleton, M.D.

Hang in there okay?  Good help is available.

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