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Old 08-30-2007, 07:27 AM   #1
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meemerdoodle121 HB User
a few Questions for people who may know the answers.

Here goes-I have been told to see if I have lyme by a person with ms. I thought I may have ms, but was wondering if the symptoms are the same. I am about to get insurance, so I will be able to get tested in a couple of months, but would like to walk into the drs office knowing what to get tested for and not have to go through a bunch of crap. I worked at a dog training facility when I was 17 and got ticks all the time. never got any rings though so I never thought I could get lyme. my symptoms are like ms but also lyme. I am confused.. I am 27 and the symptoms started when I was about 21-22 and have come and gone and got worse and stayed longer over the years. here are my symptoms-
-right eye pain that radiates into my temple.
-floaters
-hands and feet go numb and tingle (daily)
-I get sooo tired I feel druged.
-I pee 2-5 times a night
-stiff muscles
-really crap memory(like I forget main events in my life)
-headaches
-my face gets red and flushed (also daily)
-my jaw aches off and on(insure if it is from grinding teeth)
-hear a ringing in my ears ALL the time
-can't concentrate. get confused.
-feel anxious.
-hear my hearbeat in my ears(aff and on)
-see little dots of light(off and on)
-have VERY irregular menstration(whenever it wants)
I am sure I am forgetting some, but that is a few. Can anyone please give me some insite.I am scared and confused and feel like I am going batty. My boyfriend says to ignore it,and It is in my head, but I have ignored this for years, and it is getting worse daily. Please help. thanks for your time.

 
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Old 08-30-2007, 10:30 AM   #2
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Re: a few Questions for people who may know the answers.

Hi, I went through all of the MS stuff before finding I have Lyme. The only advice I'd like to give is to make sure when your tested for Lyme it's done through Igenex. Other labs are a waste of time and money in my opinion.

Ok, I lied, here goes more advice, don't listen to your boyfriend. This disease can be down right nasty.

 
Old 08-30-2007, 01:02 PM   #3
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meemerdoodle121 HB User
Re: a few Questions for people who may know the answers.

how is it tested????how do you fix it????and is it fatal???

 
Old 08-30-2007, 01:17 PM   #4
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Re: a few Questions for people who may know the answers.

Hi meemerdoodle, welcome to the board!

I do not think your symptoms are in your head. I am sure you have better things to imagine. Although a bulls-eye rash is a definite sign of Lyme, 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
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 kowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. It is my understanding that the ELISA or titer is the least reliable test and the one most doctors run first.

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.

If you need a doctor recommendation, let us 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.

I hope you can get answers soon.

 
Old 08-30-2007, 01:19 PM   #5
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Re: a few Questions for people who may know the answers.

Call IGeneX and order a kit for Wester Blot IGG & IGM. Take the kit to your doctor and insist that he/she sign the form for you to be tested for Lyme. do not let them talk you into first testing through the Elisa, it is a crap test. It would be best for you to find an LLMD (Lyme Literate MD) that knows how to read the IGeneX report. By getting done by your reg. doctor first that just saves time, since somtimes LLMD's have waiting lists. IGeneX takes about 3 weeks to get the results back to your doc. they report not only pos/neg results but all bands that are Lyme specific. You can have a neg report from IGenex and still have Lyme depending on if you have Lyme specif bands pos. Confusing I know, thaty's why an LLMD is the best person for you to see. You definately have alot of Lyme symptoms and letting it just go is the worst thing you can do. As for it being fatal, yes it has killed people, crippled people and is something that needs to be treated or ruled out immediately. There are people on this board that know how to interpet the IGeneX reports and we will help. Get the tests done, get a copy from your doc. don't just let the doc tell you that it is neg. (GET A COPY) and post the results on this board ASAP! My husband was diagnosed last month, he was CDC & IGeneX positive and when he called his do'c office to ask about results they told him it was neg. I told him to go get a copy of it so I could read it. And it clearly said POS. right on it. So don't go by what your doc tells you!! This is your life, not your doctors and not your boyfriends. Sarah

 
Old 08-30-2007, 01:34 PM   #6
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Re: a few Questions for people who may know the answers.

thank you soooo much, you have both been very informative. I will do exactly what you have said. I will probly need help finding a llmd though. I live in houston. ANy suggetions. I am getting a ppo insurance and it is in affect in a month, so I will have to wait. I can go to any doctor. I don't have a primary so going straight to a llmd would probly be best. Thank you all again. I will keep you posted.

 
Old 08-30-2007, 01:43 PM   #7
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Re: a few Questions for people who may know the answers.

The closest LLMD is Dr. Forrester in Pineville LA, he is about 4 hours from you. sorry , no one closer, right now he has a 3-4 month waiting list I would call immediately to get on waiting list before he stops taking new patients. Most of the people from Texas flocked to him after the Texas LLMD's left, so he is unindated with us Texans. I was on the waiting list for 6 months, I have my appt. Sept. 11th, finally!! But get the IGeneX tests done while you are waiting. Sarah

 
Old 08-30-2007, 01:55 PM   #8
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Re: a few Questions for people who may know the answers.

do you have a number????

 
Old 08-30-2007, 03:26 PM   #9
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Re: a few Questions for people who may know the answers.

I do not have any experience with the doctor in LA, but I have not conflicting things about him.

The only other doctor I know of around Texas is Dr. Charles Crist in Springfield, MO.

 
Old 08-31-2007, 09:30 AM   #10
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Re: a few Questions for people who may know the answers.

Quote:
Originally Posted by meemerdoodle121 View Post
do you have a number????
I cannot give you the number sorry. Call the Pineville 411. sorry, sarah

 
Old 08-31-2007, 09:36 AM   #11
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Re: a few Questions for people who may know the answers.

Quote:
Originally Posted by ticker View Post
I do not have any experience with the doctor in LA, but I have not conflicting things about him.

The only other doctor I know of around Texas is Dr. Charles Crist in Springfield, MO.
Ticker, I received a very large packet last week from Dr. F, and he had a letter in it describing his treatment and about testing and treating co-infections, I was very impressed with the letter and his knowledge. It seems to be by the letter that he does treat agressively and he definately tests and treats co0-infections. maybe his protocal has changed from before. (don't know who had a problem with his treatment). I will find out exactly what he is like in 12 days. I know alot of people who see him from here and they think he's a very good LLMD. I also heard that he added an (intern, PA, NP) something like that, because of his overload of Texans who lost their LLMD's a few months ago. Sarah

 
Old 08-31-2007, 08:32 PM   #12
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Re: a few Questions for people who may know the answers.

Good luck Sarah!

 
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