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I think it may be Lyme... Who should I see?

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Old 08-12-2007, 02:35 AM   #1
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Join Date: Jun 2007
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Nexis HB User
I think it may be Lyme... Who should I see?

I had:

fevers( comes and goes)


hair loss

Numbness and tingling in hands and feet

extreme tightness around neck and throat ( hard to swallow)

joint and muscle aches,

Blurred Vision

sore on tongue,

Tongue is white

sleep for 14-20 hours a day,

coordination issues,

speech slurring,

memory issues,

word retrieval issues

Extreme dehydration

Pain in knee joint

low urine output ( my stomach was very bloated)

extreme vertigo,


I didn't vomit nor do I have a bulleye bite....

Yet I know that ticks are very common in where I live Japan...

I am usually very hyperactive, and now my personality is very much like an introvert because everything seems so slow.... Even the way I speak.

I stayed in bed for 8 weeks, and could not move.

The other day it stopped like it never happened!

I am still weak, lightheaded ( the vertigo is much better) and cannot walk long distances like I did before this....

I finally found a doctor that said my Complementary "C4" was low, yet all the Antibody tests was fine... My MCV was also high, with a high Lymphocyte... Doctor still doesn't know what it is...

He thought I had vasculitis or Sjorgen, yet all my other test came back normal he cannot give me a diagnosis..

I reading all of your post, I wonder because of the fever ( on and off) and the rashes, and sore on the tongue, that its viral...

Because I live in Japan, i cannot find a doctor that specializes in Lyme Disease...

I cannot afford to go through another episode of this....It was a very scary experience! I could have lost my job!!!!

What should I do???

Last edited by Nexis; 08-12-2007 at 03:28 AM.

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Old 08-12-2007, 07:54 AM   #2
Join Date: Mar 2007
Location: MA,USA
Posts: 420
zandvoort HB User
Re: I think it may be Lyme... Who should I see?

Wow Nexis- I am sorry you are feeling so awful! Welcome to the board! I would suspect Lyme disease if I were you as well. Ticker will have some good info for you. We do not get many posts here from Asia. I am not a all familiar with your health care system but here are some things I might try:
  1. A neurologist is good. If you want to do some homework, you can call every neurologist in your area and ask if they have diagnosed Lyme disease without the bullseye rash. If yes, see them.
  2. Call your local health organization and ask if a doctor in your area has diagnosed Lyme before.
a couple other thoughts:
  • We have a Lyme study group here in the US out of Columbia University, NY. The Dr. heading it is Dr. Fallon. We cannot give web or contact info here but I am sure you will find it if you search for it. Maybe they know of someone in Asia.
  • Also maybe he International Lyme and Associated Disease Society can help you. Their info is on the web as well.

I think I have heard your web search engines are different than ours. I hope what I have given you will help.

Best wishes and you will be in our thoughts. Please let us know how you are doing!

Old 08-12-2007, 08:23 AM   #3
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Re: I think it may be Lyme... Who should I see?

Hi Nexis, welcome to the board!

I am sorry you have been so sick. How long ago did this happen? Lyme symptoms can wax, wane, and migrate around the body. Although a bulls-eye rash is a definite sign of Lyme disease, only about 50% of people who have Lyme ever get a rash.

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 do not understand Lyme and treat with outdated protocols. Lyme needs continuous, aggressive treatment. 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. 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 do not know of any Lyme doctors in Asia. You may want to see if there are any Lyme support groups in your area who could recommend a doctor. Maybe you could have your testing done at IgeneX? If you think your doctor would be willing to consult with a US Lyme doctor, I can give you some names of good ones. Maybe they would be willing to consult with your doctor.

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?

Old 08-12-2007, 11:09 AM   #4
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Nexis HB User
Talking Re: I think it may be Lyme... Who should I see?

Thank you so much TICKER and ZANDVOORT!

I have another important question:

1) Is it normal that almost 80 pecent of the symptoms disappeared like nothing???

I had all the symptoms listed for 8 weeks EXACT, and now its like I am completely in a different body, and feel like a hypocondriac!!!!

2)Also, I read that Tokyo, Japan had NO Lyme outbreak this year, yet because I am orignally from an industrialized tropical Island with lots of bugs and I now have 3 cats (fleas and ticks), could I have had this for years???

I ask because I have always been SO FATIGUE in my 20's, and now I am in my early 30's, it seems like its getting worse, coupled with this mysterious FLARE...

I will call the Government Office for infectious diseases and get a referral...

I tried to Columbia site and the "questions request" site was down... I will try again...

I am so happy for your support!!!!

Last edited by Nexis; 08-12-2007 at 11:11 AM.

Old 08-12-2007, 01:03 PM   #5
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Posts: 5,799
ticker HB Userticker HB Userticker HB Userticker HB Userticker HB User
Re: I think it may be Lyme... Who should I see?

Hi Nexis, I am happy to help.

Yes Lyme symptoms can wax, wane, and migrate. Many people have it for years before getting diagnosed. Sometimes people can keep the symtpoms at bay for some time until their immune system becomes stressed (illness, accident, divorce, etc.). Then symptoms emerge.

Do you treat your cats with Frontline or a similar product for fleas and ticks?

Often (in the US anyway) infectious disease doctors are not the best to see for Lyme.

Check out Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses. It is on-line. There is a lot of great information in it.

Keep us posted on your progress okay?

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