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Old 04-16-2007, 02:00 PM   #1
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Unhappy symptoms lyme?

Hello!

I made an appointment with a LLMD for Wed in FL. I'm so desperate at this point in my life and the past few days I've been getting progressively worse. I dont' know if Im going in the right direction, however, after numerous tests and MANY DR's and ER visits I'm done. I have a lot of symptoms over the past 10 years slowly come about. I cannot live without any answers. Can any of you relate to these? I know I'm forgetting some but these are the main ones.

Ive been getting heart fluttering/palpitations
constant dizziness (worst of all)
fluid when I put finger in ear/ears block
ringing in ears
humming in ears
pressure in head
anxiety (cased by symptoms)
Highly irritated by noises like beeping/boyfriend sneezing
sore neck
sore lower back
knee pain
wrist pain
vision problems (blurry, see colors, floaters/strings)
hair loss in front of head and back (bottom both sides)
feel like Im losing my mind sometimes (lost)
no energy/fatigue (could sleep all day)
feeling of Impending Doom
headaches
stop in mid sentence, forgot what I was saying.
get lost easily (disoriented)
had swollen lymph node on back of head
feel fluey a lot

***Today I feel like I have a 20 lb bowling ball on my head and someone is standing on my shoulders******

****so far have been diagnosed with Meneires, Panic attacks, and arthritis****

I have no clue about LLMD. I'm taking a 3.5 hr drive and hopefully this will be the end of my 10 year battle of this horrible affliction.

Any words of advice?

Thanks for listening,

alone in FL

Last edited by so sik of this; 04-16-2007 at 02:50 PM.

 
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Old 04-16-2007, 04:01 PM   #2
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Re: symptoms lyme?

Hi so sick of this, welcome to the board!

I know you probably feel alone, but you definitely are not. Never forget this. I am sorry you have been sick for so long.

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. 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 am glad you will be seeing a Lyme doctor. Is it the one in Temple Terrace (near Tampa)?

I think you should check out tick-borne illnesses as a possibility. To me your symptoms sound like they could be from Lyme and Babesiosis. I also recommend having your thyroid checked. Ask to have the Free T3, Free T4 (besides the T3 and T4) and thyroid antibody tests in addition to the normal panel. They are not usually done but are necessary for a comprehensive view. They are all blood tests. If you need help interpreting your results, let me know. Some people have Lyme and a thyroid disorder.

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.

Hang in there okay? Good help is available and you are not alone.

 
Old 04-16-2007, 05:02 PM   #3
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Re: symptoms lyme?

Thanks Ticker,

I'm crying as I type...this is too much. To be honest with you, I would be so happy if this was my diagnosis. Ive been suffering so long with problems of unknown idiodolgy. This past Monday was my last day of work until I find a diagnosis, I cannot work due to chronic and dibilitating dizziness and fatigue. I'm hoping that maybe something will come out of this. Thank you so much for all your support, it means more than you'll ever know. As far as the DR, he's in Naples. It is really expensive (575 for 1st visit) and I have to hold off on some bills just to do this, I have no where else to turn though. You may think I'm absolutely insane, however, my finace has "similar" symptoms. Thanks again and I will keep everyone updated.

prayers to all,

alone in FL

 
Old 04-16-2007, 05:35 PM   #4
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Re: symptoms lyme?

Hi sosickofthis. No, I do not think you are insane. Lyme doctors are expensive. Many do not take insurance because insurance companies often do not reimburse them. Your health is the most important thing.

I think we can all understand the frustration of being sick and not knowing why. It is a relief to get diagnosed and have a plan of action.

I am not familiar with the Naples doctor. Make sure he tests you for all the co-infections mentioned above. If you think your fiance may also be infected, he should be evaluated also.

I recommend that you apply for Social Security Disability since you had to leave your job. The majority of people get denied twice regardless of why they apply. I suggest getting a Social Security attorney. This can help speed up the process some. They only get paid if you win and there is a limit on what they can collect.

You are on your way to getting the help you need. Let us know how your appointment goes okay?

 
Old 04-16-2007, 05:47 PM   #5
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Re: symptoms lyme?

Thanks Ticker!

I definately will let you know how it goes. I'm taking a paid 6 week leave from work (hopefully the lld will help with FMLA paperwork so my job is protected temporarily). Thanks for all your info an support, I feel like me world is crashing. I'm confused about the contraversy about Lyme etc. I just discovered that this is what I probably have (yesterday) based on symptoms and research etc. I have a lot to learn. I'll keep in touch.

thanks again,
you saved me tonite,

alone in FL

 
Old 04-16-2007, 06:04 PM   #6
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Re: symptoms lyme?

Hi sosikofthis. We have been where you are and know how scary and over-whelming it is. Never forget that you are not alone, that good help is available, and that with proper treatment you can get better.

Do learn as much as you can. Knowledge is power.

 
Old 04-17-2007, 06:50 AM   #7
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Re: symptoms lyme?

Quote:
Originally Posted by so sik of this;2***862
Thanks Ticker,
. As far as the DR, he's in Naples. It is really expensive (575 for 1st visit) and I have to

alone in FL
Dr. Schaller?

 
Old 04-17-2007, 08:24 AM   #8
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Re: symptoms lyme?

Yes, DR Schaller. Have you seen him before? I don't ever see anything about him, however, I can't continue feeling this way anymore. He is my last resort at help me out with whatever is going on.

 
Old 04-17-2007, 08:29 AM   #9
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Re: symptoms lyme?

Quote:
Originally Posted by ticker;2***918
Hi sosickofthis. No, I do not think you are insane. Lyme doctors are expensive. Many do not take insurance because insurance companies often do not reimburse them. Your health is the most important thing.

I think we can all understand the frustration of being sick and not knowing why. It is a relief to get diagnosed and have a plan of action.

I am not familiar with the Naples doctor. Make sure he tests you for all the co-infections mentioned above. If you think your fiance may also be infected, he should be evaluated also.

I recommend that you apply for Social Security Disability since you had to leave your job. The majority of people get denied twice regardless of why they apply. I suggest getting a Social Security attorney. This can help speed up the process some. They only get paid if you win and there is a limit on what they can collect.

You are on your way to getting the help you need. Let us know how your appointment goes okay?



Another thing I would like to add is 2 years ago I was hospitalized for 3 days for pelvic pain. They were not sure what it was, however, started me on Doxycycline IV (and another antibiotic). I felt really bad for 48 hours then by the 3rd day, I started feeling better. Later on that day, they took me off the antibiotics......

Last edited by so sik of this; 04-17-2007 at 10:46 AM.

 
Old 04-17-2007, 12:44 PM   #10
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Re: symptoms lyme?

Quote:
Originally Posted by so sik of this View Post
Yes, DR Schaller. Have you seen him before? I don't ever see anything about him, however, I can't continue feeling this way anymore. He is my last resort at help me out with whatever is going on.
My family has a beach house in Naples, Florida...I have been infected with Lyme since I am for 8 years(since I was 11, I am 19 now). I have seen Dr. Schaller---he was my doctor for a VERY SHORT time (2 months) in Naples. I am a really severe case--I cant walk, move my legs, I have shaking, seizures..etc... I ended up in the ER in Naples A LOT of times, and I had major Herx reactions to the antibiotics I was on. When my case got too serious Dr. Schaller said I needed to find another LLMD. He is a great diagnostician however--he sent my blood to many labs, took about 40 tubes of blood and re-tested for everything. But, I was unhappy with the way things ended up when I got TOO SICK (I felt "ditched" and kind of abandoned...when I needed a doctor the most...) I guess it was for my own good...I DID need a doctor who had more expierience with Severe cases of Lyme--But I had no treatment for about 3 weeks (and I got even sicker)...I then flew back to my Long Island, NY house (on a plane in a severe condition)---and now I see a team of 3 of the TOP LLMDs here, ...which is better for my severe case. I do reccommend him though---as long as you are not near death like I am/was. He is expensive too...but I have seen other LLMDs here in NY for consults who charge the same amount as him too :/ Take care and get well!

 
Old 04-17-2007, 03:08 PM   #11
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Re: symptoms lyme?

Thanks Beachgirl.

I'm going to see him tomorrrow for the first time. Maybe it will be ok since Im just getting a diagnosis from him. It's too late to cancel, I already paid. I'll see what happens. THanks for your help! I will let you all know what happens.

 
Old 04-17-2007, 03:43 PM   #12
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Re: symptoms lyme?

Good luck so sik of this! Let us know how it goes.

If it does not work out for some reason, there is a Lyme doctor in Temple Terrace (near Tampa).

 
Old 04-17-2007, 03:51 PM   #13
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Re: symptoms lyme?

whats his/her name?

 
Old 04-17-2007, 03:55 PM   #14
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Re: symptoms lyme?

Dr. Michael Cichon.

 
Old 04-17-2007, 04:03 PM   #15
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Re: symptoms lyme?

Thanks Ticker! I called that office earlier (didnt realize it was the same DR) and the receptionist said that he (DR C) only gives advice on what to do. She said that my primary care DR would have to be compliant with what he is requesting. Do most people have problems with this (their PCP)? I think I'll get the testing done by dr schaller and see how this goes. I will probably be broke by the end of the week LOL. I am going to seriously consider seeing DR C because he is MUCH closer. Im not looking forward to this long drive tomorrow. I'm so lucky to have a supportive husband, he is the best :-) Thanks again!

 
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