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Old 09-08-2007, 06:47 PM   #1
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I have it.

Hello all:
I have Lyme Disease. I have to take medication twice a day for 3 weeks. My doctor said I had Lyme by the blood work she did and based on my symptoms. What if the medication doesn't work then what? Take Care & Write Back Soon,
Leah

 
Old 09-08-2007, 07:02 PM   #2
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Re: I have it.

Hi Leah, welcome to the board!

How long were you sick before getting diagnosed? Which antibiotic and dose are you taking?

Three weeks of treatment is not long enough for Lyme disease. From what I understand, an infection caught within two weeks of the bite should be treated with a minimum of six weeks of the proper dose antibiotic. The antibiotics kill the bacteria when they are reproducing, which is estimated at four weeks. Six weeks of treatment will cover one growth cycle. If symptoms are still present, further treatment is warranted. A longer infection needs longer treatment.

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 kowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Lyme needs continuous aggressive treatment.

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. Have you been tested for these?

If you need a doctor recommendation, let us know.

Be aware of the Jarisch-Herxheimer Reaction (herx). Often, when people who have Lyme take antibiotics, their symptoms become worse or they get new ones. When the antibiotics kill the bacteria, toxins are released making them feel sicker. It can be very scary when it happens, but it is a good sign the antibiotics are working. Although it can vary individually, many people experience this at the beginning of treatment and every three to four weeks.

It is a good idea to document your symptoms daily. One way to do this is to list the three main symptoms you have each day and a numerical rating of their severity, from 1-10. Over time when you review this, you can see when your herxes occur and how you are responding to the meds.

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 (on-line). 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?

 
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Old 09-08-2007, 07:11 PM   #3
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Re: I have it.

Hi Leah. Welcome!

Sorry to hear that you have lyme disease but it's great that you are getting treatment. Are you seeing a LLMD (Lyme literate medical doctor)? If not, you should. From what I understand, regular doctors do not treat lyme long enough. They put you on antibiotics for a few weeks and send you on your way! How did you figure out you had Lyme? Did you test thru IgeneX? If you have a copy of your results maybe you can post it. We have a wonderful lady named Ticker that might be able to offer you some info.

Ticker...if you are reading this, sorry to volunteer you but i'm sure you won't mind


Glad you found us,
J

 
Old 09-08-2007, 07:14 PM   #4
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Re: I have it.

LOL! Ticker you got to her first!
You are fast girl!

 
Old 09-09-2007, 05:53 PM   #5
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Re: I have it.

Hi Leah.

Everyone pretty said it all already so I'll just send you greetings and a pray that you will get better.

Fighting Lyme and it's co-infections can be a rough and long bumpy road. Hang in there!

Peace and health to you,
Mickie

 
Old 09-10-2007, 12:38 PM   #6
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Re: I have it.

Hello all:
I have a question. Can u have lyme for the rest of your life? Does it come and go? I am seeing my PCP next week for a check up. Sorry about not responding soon. The med I am taking starts with a D and has a long name to it. can't spell the name. Take Care all.
Leah

 
Old 09-10-2007, 02:02 PM   #7
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Re: I have it.

Hi Leah- welcome to the board! Sorry you have Lyme though. probably doxycycline. Yes, Lyme can pop up for years after you contract it. The earlier you are diagnosed and treated the better (reduced chances of relapse) and it looks like you got it early. Most docs do not give patients a high enough dosage for long enough though. Dr Burrascano's doc Ticker mentioned has the suggested treatment plan so you can see if your doc is doing the right thing. You can have the discussion with your doc and if s/he thinks the guidelines are too aggressive, find an LLMD who can treat you according to LLMD protocols. It takes a while to find one and get in so do that really soon. people here can suggest docs according to your location and there are LLMD finders on the web too.

Best wishes for your Lyme journey!

 
Old 09-10-2007, 05:14 PM   #8
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Re: I have it.

Hello all:
I have such pain with this Lyme Disease. Mostly in the knees and elbows I'm only 27 years old. I am taking doxycycline Thank you all for those who respond to me.
Take Care
Hugs,
Leah

 
Old 09-10-2007, 05:20 PM   #9
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Re: I have it.

Hi Leah. What dose of Doxy are you taking?

There are a few tips about taking Doxy. 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.

 
Old 09-10-2007, 05:26 PM   #10
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Re: I have it.

Hello Ticker,
100mg in the AM and 100mg in the PM. I started it on saturday morning.
Hugs,
Leah

 
Old 09-10-2007, 06:05 PM   #11
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Re: I have it.

Hi Leah. 200 mg of Doxy daily is not strong enough for Lyme. I believe the recommended dose is 300-600 mg daily. Three weeks is not long enough either.

I highly recommend that you be evaluated by a Lyme knowledgeable doctor so you can be tested for the co-infections and get properly treated. The sooner you get proper treatment, the better.

 
Old 09-10-2007, 06:42 PM   #12
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Re: I have it.

Before I saw an LLMD, I was being treated by an infectious disease doc. I couldn't get a positive lyme test but he decided to try antibiotics anyways. I was on 6 weeks of doxy 200mg per day. It did absolutely nothing for me. 6 months later, I finally got a positive test w/ Igenex and have the correct dosage of antibiotics.

So, long story short, I would suggest to see if your doctor can at least change your dosage to 300mg per day. It would also help you greatly to find a Lyme Literate Doctor. That way you can have the proper length of time for treatment.

Good luck.

 
Old 09-11-2007, 05:06 PM   #13
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Re: I have it.

Hello all:
I went to my doctor today as I couldn't barely walk. The doctor said my knees were swollen. And also said that with Lyme it was normal to have a fever of 99 and that it will take some time to get better with the antobics. I have only been on them for 4 days now. I go back to the doctors next week.
Take Care
Leah

 
Old 09-11-2007, 05:44 PM   #14
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Re: I have it.

Do you know any Lyme Literate Doctors in your area? If not, you can post your city and state and hopefully someone can recommend a good Lyme doctor. Or you can do a search and find a Lyme Support Group in your city.

I can't emphasize how important proper treatment is. Take it from someone who's learned the hard way...you don't want to undertreat Lyme's. Unfortunately w/ having Lyme's, you have to be your own advocate for treatment.

Good luck.

 
Old 09-12-2007, 07:40 AM   #15
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How does one get it?

How does one get Lyme Disease?

 
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