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Old 05-07-2007, 07:47 AM   #1
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New Here & Need Help

Hello everyone, I am new here and would love any input that can be offered.

Last summer I went to the doctor because I woke up with some numbness in my face, my dr ordered a cat scan because I had told them the only thing I recalled was bumping my head a few days prior.

The test came but normal so they referred me to a neurologist who did eeg, brain scans, mri, etc. Everything was ok so he decided to order blood work which came back positive for lyme.

The positive result came approx. 5 months after my first appt. At that time, the numbness was pretty much the entire right side of my face, my right arm would go numb, both my knees ached all the time, especially right one,

I was tired all the time, irritable, etc. I also felt like I could not remember anything. I have always been a bit of a ditz but I would drive past where I was going and have to do a turn around and sometime pass it again.

Well they put my on a 28 day course of antibiotics. They said that it was too soon to do another lyme test because chances were it would still show positive.

My knee pain went away and the numbness in my arm did also. Would occassionaly have the tingling and numbness in the face but at least it was not a 24/7 thing anymore so I let it go.

Well 2 months ago we started our move from Maryland to Florida. Prior to moving I would notice when I laid in the bed at night I could feel something weird going on in my head, then my head would shake (kind of rock side to side) a little.

Thought it was all in my head though so I never brought it up to anyone. Well during our move my husband asked me why I was shaking my head so much. Apparently it is something that everyone can see.

It went from happening at night to several times a day. I can feel it starting and the more I try to stop it, the more it does it, sometimes just for a few minutes, sometimes up to an hour.

I also noticed I have rib pain a lot on the right side, have a spot on my left should that always feels like it is on fire and being stuck with something but there is nothing there.

I have lost a lot of weight yet my appetite is the same. About 10 pound during the past 5 weeks and I am a small person to start with so it really makes me look sick. I just look like I am aging so much and I do not know what to do.

Are these all typical lyme symptoms or am I just loosing my mind. The head shaking I think is the weirdest feeling and then the tingling in my face starts shortly thereafter.

Would appreicate some help. Is lyme forever?

 
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Old 05-07-2007, 08:12 AM   #2
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Re: New Here & Need Help

Hi Tammy,

Welcome to the board, sorry you are ill.

Lyme can cause many, many types of symtoms and you can have a few or nearly all. Lyme has come to be known as the new Great Imitator (it used to be Syphilis that had this title) for this reason as it can mimic many other conditions.

Below is Ticker's (another board member) list of symptoms which I copied from one of her other posts:

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 common for Lyme symptoms to wax/wane and migrate around the body.

If you suspect you have Lyme, it is important to be evaluated by a Lyme literate physician. Be aware that just because someone is an infectious disease specialist or calls themselves a "Lyme expert/specialist" does NOT mean that they are Lyme literate. The best way to find a competent doctor is through other patients who have had good experiences and received effective treatment. Check for a Lyme support group in your area as they can be outstanding sources of information and resources.

Be aware that there is NO TEST THAT CAN ABSOLUTELY RULE OUT LYME!!! You can test negative and still have Lyme disease. The most frequently performed test, the ELISA, misses over 60% of cases. The more accurate test, the Western Blot, is still not completely reliable and is generally only given if you have a positive ELISA. Which makes no sense at all but there you have it. So in other words a negative test does NOT always mean that you don't have Lyme. For this reason, the CDC states that Lyme is supposed to be a clinical diagnosis with the test used to help confirm.

In the largest Lyme disease trial ever conducted (for the Lyme disease vaccine trial for Lymerix) which included 10,000 participants, it was found that 36% of the volunteers with proven Lyme disease (culture or DNA positive) never developed a positive Western Blot.

Some reasons why a test can come back negative in a Lyme infected patient:

1. The sample was taken too soon after infection for your immune system to have mounted a defense.

2. You are producing a detectable level of antibodies, but the lab made an error.

3. You are producing antibodies to a strain of Borrelia burgdorfiri (Lyme) that the lab cannot detect (for the record, there are over 200 strains in the US alone)

4. You are producing antibodies, but they are bound to they Lyme bacteria (called a complexed antibody) without enough free-floating antibodies in the bloodsteam to be detectable.

5. Your immune system is compromised and not responding properly.

6. By taking antibiotics early in the disease, the immune response may have been aborted.

7. The bacterium has changed its makeup and the immune system hasn't noticed it.

8. The bacterium is cloaking itself inside an immune system cell thereby escaping detection.

9. You have a genetic predisposition to produce a negative test, as shown by Drs. Wang and Hilton in their 2001 publication.

 
Old 05-07-2007, 02:18 PM   #3
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Re: New Here & Need Help

Hi tammy, welcome to the board!

One month of treatment is never long enough for Lyme even if an infection is caught within two weeks of the bite. You were not treated long enough, especially since you had been infected for months. Do you remember what antibiotic and dose you took?

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. Were you ever tested for these?

Where in FL are you? I know of a Lyme doctor in Temple Terrace (near Tampa). If you would like his name, let me know.

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.



TINUVIEL, thanks for posting the symptom list!

 
Old 05-07-2007, 06:04 PM   #4
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Re: New Here & Need Help

I was treated with doxy 100mg twice a day. Now I am on the same thing again. Yes, I would love the name of the doctor that you know of. ******* is doing the lab work. Same that did it before when I was diagnosed, just in MD that time.

Thanks for replying. It helps to hear others that have dealt with it.

 
Old 05-07-2007, 06:13 PM   #5
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Re: New Here & Need Help

Hi Tammy. 200 mg of Doxy is not strong enough for Lyme. I believe the recommended dose is 300-600 mg daily.

A few tips about Doxy in case you did not know. Do not have any dairy, magnesium or iron products two hours before or after taking it or it will not be absorbed properly. If it makes you nauseous, eat something substantial and non-dairy before taking it. Avoid the sun. You can get a severe burn in minutes even when wearing sunscreen. Do not lay down for at least an hour after taking it or you can ulcerate your esophagus. This is very painful! Drink a full glass of water when you take it for the same reason.

Whenever you take any antibiotics, make sure you take high-quality acidophilus capsules. They replace the good bacteria in the body and help to prevent yeast overgrowth. The best ones to get are refrigerated. Most healthfood stores have them. Wait at least two hours before or after taking the antibiotics to take the acidophilus.

Is the lab Quest?

The doctor in Temple Terrace is Dr. Michael Cichon. I hope you can see someone soon. Keep us posted on your progress okay?

 
Old 05-08-2007, 05:15 AM   #6
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Re: New Here & Need Help

Have you spoke to anyone that has seen this dr before? I actually called his office yesterday and they said that they were sending me out some paperwork to fill out and then he would decide to see me. Would love ref. if anyone had any. I think the recept said he was $ 600.00 to get in the door for the first consultation and if you needed additional appts it would be $ 150.00 but usually people only needed the one which made me a little skepitcal.

 
Old 05-08-2007, 08:00 AM   #7
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Re: New Here & Need Help

Quote:
Originally Posted by tammy120771 View Post
Have you spoke to anyone that has seen this dr before? I actually called his office yesterday and they said that they were sending me out some paperwork to fill out and then he would decide to see me. Would love ref. if anyone had any. I think the recept said he was $ 600.00 to get in the door for the first consultation and if you needed additional appts it would be $ 150.00 but usually people only needed the one which made me a little skepitcal.
Tammy, are you talking about Dr. Cichon? Who at the doc's office told you that you would only need one appt? Sarah

 
Old 05-08-2007, 10:50 AM   #8
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Re: New Here & Need Help

I had explained to the receptionist that I was unemployed and just moved here and asked what the normal routine was. She said most patients are only seen in the office for the consultation and then treated outside the office. I told her I was concerned and wondered if I would end up needing the IV anti. due to the symptoms I am now having and the fact that it involves head tremors. She said probably would have a nurse come out to handle all that. So now I am confused and surely do not want to pay that much just to be dismissed.

 
Old 05-08-2007, 03:42 PM   #9
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Re: New Here & Need Help

Quote:
Originally Posted by tammy120771 View Post
I had explained to the receptionist that I was unemployed and just moved here and asked what the normal routine was. She said most patients are only seen in the office for the consultation and then treated outside the office. I told her I was concerned and wondered if I would end up needing the IV anti. due to the symptoms I am now having and the fact that it involves head tremors. She said probably would have a nurse come out to handle all that. So now I am confused and surely do not want to pay that much just to be dismissed.
Tammy I do know that Home Health care will come and administer your IV ABX's for you, but it doesn't sem logical to me that the doc wouldn't want to see you periodically to re evaluate your onging symptoms and improvements. I know that some people have the vials sent to them and administer themselves also. My friends daughter has LD and they were doing this. But she flies up to see Dr. Jones every 3 months for check-ups. sounds weird to me! Sarah

 
Old 05-08-2007, 06:29 PM   #10
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Re: New Here & Need Help

I agree. I thought that it seemed strange to treat someone on a one visit case. And for the amount of money he wants just seems like it may be a money racket to me. Just not too many docs around here. Called some infectious disease doctors and the only one that even said they thought they could treat me said I would have to go to the HIV clinic for treatment. That also seemed strange.

 
Old 05-08-2007, 07:23 PM   #11
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Re: New Here & Need Help

Quote:
Originally Posted by tammy120771 View Post
I agree. I thought that it seemed strange to treat someone on a one visit case. And for the amount of money he wants just seems like it may be a money racket to me. Just not too many docs around here. Called some infectious disease doctors and the only one that even said they thought they could treat me said I would have to go to the HIV clinic for treatment. That also seemed strange.
the price you were quoted for your first visit is pretty normal. My son's was $880.00 and mine was $625.00. LLMD's are not cheap, but worth it if you have LD. Sarah

 
Old 05-09-2007, 06:33 AM   #12
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Re: New Here & Need Help

Hi Tammy. Many Lyme doctors no longer take insurance because insurance companies often do not reimburse them. That is why the visits are so expensive. I think this doctor wants you to have a local doctor who will work as a liason with your treatment. This is not unusual.

People who are on IV antibiotics usually have a nurse show them how to do the infustions until they are comfortable doing them on their own. Then the nurse usually visits once a week to take blood and change the dressing.

The most important thing anyone who has Lyme disease or may have Lyme disease can do is to see a knowledgeable doctor.

 
Old 05-09-2007, 06:58 AM   #13
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Re: New Here & Need Help

Yes I understand about the insurance company issue. I would rather have a doctor that would take the time to deal with me and have to pay him out of pocket then someone to rush me and not take care of me.

I have been doing so much research the past couple of days. I see that I am not alone with thinking that I was done with treatment and not recognizing all the symptoms coming back right away. I was starting to feel a little stupid there for a while.

 
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