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Old 09-05-2006, 02:44 AM   #1
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hanelo4 HB User
Questions about Lyme disease and who to see?

Hello,

Since 2003, I have been having many, many problems. It all started with a chemical sensitivity to a medication I was taking. I was rushed to the ER and told that I was having panic attacks. This went on for several years.

Fast forward to 2006. In January of this year, I got very sick with the flu(that's what the doctor told me I had). I had really bad joint pain that radiated through my arms and body and made me feel really bad for about a week. I was then struck with a bad virus only days after the flu.......so I was pretty bad off. I felt like I got better for a while only to be hit with some weird symptoms. Severe joint pain, cloudy mind(sometimes when I wake up, I feel like my brain is slow), uncontrollable shakes, low body temperature, chills, bladder pressure, severe fatigue, muscles jumping all over but especially on my left eyelid, so fatigued that I felt like I wouldn't wake up, mood swings, sound sensitivity, eyes not adjusting to darkness very well, rib soreness/inflamation(I took prenisone for this. Thought it was costocondritis. It eased for a bit and is now hurting again), hair loss, stiff neck.......and the list goes on. I started reaserching lyme disease after seeing a misdiagnoses show on TV. I was floored after reading all the symptoms. I have many of them.

Anyway, my question is this........who do I see to have a lyme test done? I read a lot of posts about LLMD. What exactly is that and what is Igenex?

Thank you for any information you can give me. I am so tired of suffering. I feel like I have lost 3 years of my life already.

Chantel

Last edited by hanelo4; 09-05-2006 at 02:51 AM.

 
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Old 09-05-2006, 04:39 AM   #2
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raylp HB User
Re: Questions about Lyme disease and who to see?

LLMD means a Lyme literate medical doctor. These are distinctly different than the average general practioner who may not be up to speed on Lyme. A common experience with GP's is that they give you 100mg of doxy and tell you to call them next month.

It's also common for them to discount your experience and tell you it's all in your head, and refuse testing. Anything is possible, but the idea is that if you go with a LLMD, you have someone with a high level of experience, and therefore someone who understands that the standard 30 day protocol of antibiotics is simply inadequate for Lyme disease. They may employ longer-term antibiotics, or other methods as well.

Also, my 2 cents are:

To research the salt-c protocol and "Lyme and Rife"

I came to a personal conclusion that I saw too many people not getting better from antibiotics, and looked into these options. The testimonials report many people recovering fully.

Last edited by raylp; 09-05-2006 at 04:43 AM.

 
Old 09-05-2006, 05:17 AM   #3
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ticker HB Userticker HB Userticker HB Userticker HB Userticker HB User
Re: Questions about Lyme disease and who to see?

Hi Chantel, welcome to the board!

I am sorry you have been so sick, I know it is frustrating. 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

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. 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 such as IgeneX in Palo Alto, CA. I do not know of any Lyme doctors in Louisiana, but if you want a recommendation for out-of-state, let me know.

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

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. Burrascano's treatment guidelines. He is one of the top Lyme doctors in the country, and many doctors follow his protocols.

Don't give up. You will find out what is wrong.

 
Old 09-05-2006, 06:54 AM   #4
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6Blues HB User6Blues HB User6Blues HB User
Re: Questions about Lyme disease and who to see?

Hi Chantel2003 and welcome.

I also had strange symptoms and bounced from doctor to doctor - only to be told that there was nothing wrong with me, even though I was getting sicker and sicker.

My hair fell out, my short term memory got bad, I lost my sense of balance, my face felt numb, I had a strange itchy rash (but not the bulls-eye), I could barely keep my eyes open after sleeping for 12 hours, I gained tons of weight (and I didn't change my eating habits) -- all scary stuff!

To have the doctors tell me that nothing was wrong was very very frustrating!

Ticker is right - don't give up. And that's a great book that was recommended.

An LLMD is a Lyme Literate Medical Doctor. They are life savers.

I happen to meet someone who had similiar symptoms to mine and they recommended the doctor to me. After seeing me, the LLMD started treatment without a positive blood test (my blood was tested later at Igenex and came back positive).

It turns out I also have a co-infection called Baetonella. If you do get tested, get tested for the co-infections also.

This is a great place to get comfort, understanding and answers to your questions.

Hang in there, Ok? Peace and health to you.

 
Old 09-11-2006, 03:05 AM   #5
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hanelo4 HB User
Re: Questions about Lyme disease and who to see?

Thank you so much for all the information. I will definitely research that. Forgive my ignorance to all of this. I am so new to this. How did you find out you had Lyme and what did you have to do to treat it? What kind of symptoms did you have? Does the symptoms I have sound like Lyme?

Thank you for responding,
Chantel

 
Old 09-11-2006, 03:16 AM   #6
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Location: Louisiana
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hanelo4 HB User
Re: Questions about Lyme disease and who to see?

Hi there Thank you so much for replying. Out of all the symptoms you have posted I have these:

Unexplained fevers, sweats, chills, or flushing.........(all of these)
Unexplained weight change--loss or gain..........(weight loss)
Fatigue, tiredness, poor stamina.........(all of these)
Unexplained hair loss
Swollen glands.........(off and on)
Unexplained menstrual irregularity
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea........(constipation)
Chest pain or rib soreness..........(I've been dealing with this for a few months now)
Shortness of breath, cough.........(shortness of breath)
Heart palpitations, pulse skips, heart block..........(fast heart beat-only sometimes though)
Joint pain or swelling.........(joint pain)
Stiffness of the joints, neck, or back.........(all of these especially stiffness)
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain.....(neck stiffness for a few months now)
Eyes/Vision: double, blurry, increased floaters, light sensitivity....(floaters and light sensitivity)
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity......(sound sensitivity. Easily startled)
Lightheadedness, wooziness.....(sometimes)
Tremor.......(my whole body shakes uncontrollably. VERY scary)
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Mood swings, irritability, depression.....(all of these)
Disturbed sleep-too much, too little, early awakening...(sleep too much)
Exaggerated symptoms or worse hangover from alcohol

Yes, could you please give me a recomendation maybe close to my area. Thanks so much!

Chantel

Last edited by hanelo4; 09-11-2006 at 03:17 AM.

 
Old 09-11-2006, 03:21 AM   #7
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hanelo4 HB User
Re: Questions about Lyme disease and who to see?

Thank you so much. You don't know how many doctors I have been to lately. They are getting to the point where they think it's in my head. I think my husband is starting to think that too. I will feel real good for a few days to a week or so then start feeling terrible all over again. Is this normal?

Another question. Can the blood work be sent off to the Igenex clinic in CA? I'm pretty far and don't think I could travel there.

 
Old 09-11-2006, 06:43 AM   #8
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Re: Questions about Lyme disease and who to see?

Hi Chantel2003.

I am sure you have better things to imagine! Lyme can be difficult to diagnose. I think most people who have Lyme see an average of ten doctors before getting diagnosed.

Yes you can order a testing kit from IgeneX and have the blood drawn locally. You can contact them for information on how it is done.

I don't know of any Lyme doctors in LA. The closest one to you that I know of is Dr. Charles Crist in Springfield, MO. Unfortunately, there are not very many Lyme doctors and many people have to travel to see one. Some doctors will spread out appointments for those who have to travel.

I hope you can see a knowledgeable doctor soon. Hang in there okay?

 
Old 09-12-2006, 01:32 AM   #9
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hanelo4 HB User
Re: Questions about Lyme disease and who to see?

Hi ticker

Thanks for replying. I have been bounced back and forth from doctor to doctor. One thinks I have this, the other thinks I have that. It really adds stress to ones life for sure. I start feeling better and think it's all over with then get slammed right back down again with weird symptoms.

Thank you for the information. If I have to travel, then I guess that's what I'll have to do.

Thank you so much
Chantel

 
Old 09-12-2006, 07:42 PM   #10
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TINUVIEL HB User
Re: Questions about Lyme disease and who to see?

Hi Chantel,

So many of us have been through the ordeal of going from one doctor to the other. I finally traveled out of state to get to a competent doctor and it was by far one of the best decisions I ever made. Good luck.

 
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