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Old 10-13-2006, 11:12 AM   #1
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suezy HB User
newly diagnosed? Could use advice

Yesterday I was tentatively diagnosed with Lyme Disease-I could use advice as to whether this sounds like Lyme-if the treatment seems on target, and most importantly-what can I expect over the next few weeks or longer.

I was fishing in the Catskill mountains in New York about a month ago-so lots of woods, and yes, I laid down in the grass a few times. I never saw a tick in the grass or on me. I was only there from Friday to Sunday-on Sunday as I was driving back to Ohio, I noticed what I thought were two spider bites on my torso. By Monday it started to get nasty-but I had also acquired poison ivy and I'm pretty sure I had poison ivy over the bites. 5 days later-I had a large flat red rash-about the size of a cantalope stretching across my stomach. It never had a *********appearance, itched a little but didn't hurt. I went to an urgent care and the doc thought I either had an allergic reaction to a bite or an infection and treated me with cortisone and 10 days of diococlyn (spellings probably not right-but I think it is what you folks refer to as doxy?)-and I felt better. Then about a week after I stopped the antibiotics I started feeling weak, very tired, and just crummy. Was waking up at night with aches and numbness. I knew I didn't feel well, but blamed it on stress. On Weds. I developed a terrible pain in one of my knees and this is what took me to my family doc thinking I might have a blood clot or something. He put it all togehter and said he thinks I have Lyme. Said I needed at least 21 days of doxy and started me on it. He did some blood tests-all I heard back is that some values were high and some low and he wants me to repeat them in a week. I'll see him in a couple of weeks again.

My questions: does this sound like Lyme? I never saw a tick, never had bulls-eye rash-it seemed to come on very quickly-probably 2 days from when I was in the woods-- Second question-should 21 days of doxy do it? Many of you seem to be on it for longer.

3rd. question-what can I expect? I'm still feeling exhausted-knee pain is a little better (he also but me on mega doses of advil for the pain)-can this get worse before it gets better?

Any help you can give would be greatly appreciated--Suezy

 
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Old 10-13-2006, 03:56 PM   #2
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Re: newly diagnosed? Could use advice

Hi Suezy,
If it is Lyme and it is caught right away 21 days of doxy should surfice. BUT like me if it is in the later stages that will not be enough. Advice. Start a journal, write down EVERY symptom, even if you don't think it is relevant. Lyme can be very confusing and frustrating. i've been dealing with it and all of it effects for almost 7 years now. i wont bore you with everything that it has done to me. I also do not want to scare you unnescessarily. Keep on any anitbiotics that you are given. Do not stop taking them for any reason! i wish you the best of luck. let me know if you have any additional question.
Re'Ann

 
Old 10-13-2006, 08:59 PM   #3
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Re: newly diagnosed? Could use advice

Suezy
Glad you found us, but so sorry you had to. The symptoms you describe do sound like lyme. I have had it 19+ yrs. The longer you have had it, the harder it is to treat. It is such a tricky little bacteria. Were you tested for the co-infections? If you have any of these, they do affect the treatment.

The rash you describe sounds like a bullseye to me. I recently had a bullseye which was 4" X 2" and lasted for 6 wks. Usually it will be from 1 to 4 wks. Mine did not appear to have a very defined center but it was seen by 2 different Drs and the LLMD said it was a bullseye lyme rash.

Your description and length of time since you were exposed could very well mean it has had time to spread out of the blood to the tissue and other organs. Most LLMD's do recommend at least a 6 wks even for early diagnosis. How much doxy are you taking? Most Drs recommend 400mg or more. Also, be careful. You can burn severely from doxy from just minutes in the sun. Do not take milk products within an hr of doxy and do not lay down after the doxy for 30 min (I think 30 mins it right)

There is alot of controversy over how long to treat and the dose. My best advice is to see a LLMD. Get copies of all your results. And Re'Anns advice on the journal is excellent. Be very detailed.

Herxs are possible (and probable). When you kill the bacteria the lyme burst open and spill their toxins into you. This is ammonia and you can become more ill than before. Symptoms can jump around and new ones show up.

Let us know if there is any thing we can do. We are here to help each other.

Re'Ann - Welcome to you too. I don't remember seeing you on here. I know how hard it is to deal with this long term. Let me know if I can help you.

Prayers....Marsha

 
Old 10-14-2006, 08:02 AM   #4
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Re: newly diagnosed? Could use advice

Hi suezy, welcome to the board!

Many people are bitten by ticks without knowing it. They are tiny and inject a numbing agent so you cannot feel them on you. Although a bulls-eye rash is a definite sign of Lyme, there are many types of rashes you can get and only about 50% of people who have Lyme ever get a rash. I suggest that you get copies of all your test results.

What dose of Doxy are you taking? Three weeks of treatment is never long enough for Lyme. An infection caught within two weeks of the bite needs 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.

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

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.

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 tested for these?

It is good that your infection is early. Getting the proper treatment early in the infection may reduce the chance of long-term complications. I do not know of any Lyme doctors in OH. There is an excellent one in Hermitage, PA. Would you like his name?

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
"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.

Hang in there okay? Good help is available.

 
Old 10-14-2006, 08:04 AM   #5
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Re: newly diagnosed? Could use advice

Hi Re'Ann, welcome to the board!

Are you currently being treated? Were you tested for all the co-infections?

 
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