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Many Lyme Questions!

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Old 10-07-2007, 02:45 PM   #1
Join Date: Oct 2007
Location: New York
Posts: 3
goldengirl422 HB User
Many Lyme Questions!

I have been sick for 6 weeks. My first sympton was terrible abdominal diaherra, just for urge to go to the bathroom frequently. I had a constant low backache and ran low fever on and off, constantly feeling fluey. I kept going back to my internist, complaining of these symptoms. Because I had recently vacationed in the Domincan Republic, the doctor kept testing my stool (all neg) focusing on something like a protoza I may have picked up in the DR, saying that I would have to ride it out and it would go away on it's own. The abdominal pain became worse, so she sent me to a gastoenterologist. He did a Lyme Test and called to tell me it was postiive. Not the Western Blot portion but the Ig(a)? Not sure of the name. He put me on Doxycycline (500 mg) 2X a day. Today is day 4 and I'm really not feeling all that much better. Feel flushy although no fever, achy still, backache is still there and fluey, fatiqued, cranky. Am I rushing things or does this treatment take a while? I thought it would be like taking antibiotics for strep throat, feeling better in a couple of days.

I live in upstate NY where ticks are rampant, however 4 weeks prior to my first symptoms I had been in the Canadian Rockies, hiking. I'm pretty careful at home so I figure I got it in Canada. Would there be a different strain of Lyme there, which maybe the drugs aren't responding to?

Also, in seeing further medical advice, what type of doctor should I see. Does anyone know of one in the Dutchess, Putnam, Westchster area of NY State?

I just want to feel better....this is really no fun. I had heard about Lyme and how nasty it was but I never realized how bad.

My heart goes out to all of you who had been sick with this for so long.

Last edited by goldengirl422; 10-07-2007 at 07:17 PM.

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Old 10-07-2007, 05:26 PM   #2
Senior Veteran
Join Date: Jan 2002
Posts: 5,799
ticker HB Userticker HB Userticker HB Userticker HB Userticker HB User
Re: Many Lyme Questions!

Hi goldengirl, welcome to the board!

I am sorry you have Lyme, but it is good you have been diagnosed. I suggest that you get copies of your test results. Yes there are different strains of Lyme.

Are you sure about the dose you said you are taking of Doxy? 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.

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

It is very important to see a kowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many 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?

I know of three Lyme doctors in NY who come highly recommended: in Hyde Park, Armonk, and Manhattan. Which is closest?

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.

During treatment, 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.

It is normal to feel worse before feeling better, and it can take time. Hang in there okay?

Old 10-07-2007, 06:31 PM   #3
Join Date: Oct 2007
Location: New York
Posts: 3
goldengirl422 HB User
Re: Many Lyme Questions!

Thanks so much for your in depth reply.

Yes I am sure of the doxy dosage. Does it seem like too much or too little? So far I am doing everything you said and am tolerating it ok. Drinking lots of water too.

I'm unsure of exactly what was tested for. I will call my doctor this week and ask for the records of all tests, before I proceed.

I am within driving distance of all the doctors you mentioned. Hyde Park is right up the road, but I would like to see the best and most knowledgeable wherever they are....

I saw on the list of Drs. on this board, Dr. Daniel Cameron who is in Mt. Kisco. I thought of trying him, however I'm sure getting an appt soon may be a problem. I would like to be seen asap to be sure the doxy dosage is correct, and long enough. They have it prescribed for 3 weeks.

Also, another question. I see Mitro Valve Prolapse is a topic on the symptoms list. I do have MVP...what is the connection to Lyme?

Thanks again.

Last edited by goldengirl422; 10-07-2007 at 07:02 PM.

Old 10-07-2007, 06:54 PM   #4
Senior Member
Join Date: Oct 2006
Location: usa
Posts: 182
mctassi HB User
Re: Many Lyme Questions!

Hi goldengirl,
I'm on doxy also. I take 600mg per day. Are you on 1000mg per day? I had a problem with the pharmacy filling the script. for 600mg. But my script was for a longer perriod. I think 6 months worth. 600 is high 1000mg per day seems really, really, high. I don't really know though. I wonder what other dosage people are on?

Old 10-07-2007, 07:05 PM   #5
Join Date: Oct 2007
Location: New York
Posts: 3
goldengirl422 HB User
Re: Many Lyme Questions!

Good Lord...I made an error! The Doxy is 100 mg 2X a day....not 500...

I must have Lyme huh?

Sorry...I just checked the bottle again.

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