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    Old 06-01-2007, 09:27 AM   #1
    BarbaraH
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    what can I expect?

    Hi all -

    I'm new here, just found a small tick (about the size of a lower case "o" in this font) on my leg 4 days ago and got it off quickly, before it could attach but after I'd been biten. We do have deer in our woods, so I washed the site with soap and water and put an OTC antibiotic ointment in it. 36 hours later the very reddened bite are had a pale ring around it and bruising which set off alarm bells in my head. I saw an internist the next day and since I have lupus, she started me on an antibiotic without delay. I've just taken my 4th dose of Doxy 100mg and take it twice a day.

    Is this dose appropriate or too low?
    I know only time will tell, but is it likely that I've avoided Lyme? I don't need anything to make me feel any more tired or any worse than I do with the lupus!
    What should I be mindful to watch for in the coming months?

    Thanks! Wishing you well - Barbara
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    Last edited by BarbaraH; 06-01-2007 at 09:27 AM.

     
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    Old 06-01-2007, 05:01 PM   #2
    ticker
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    Re: what can I expect?

    Hi Barbara, welcome to the board!

    I am sorry you were bitten and that you are dealing with so much. How did you remove the tick? Did you save it?

    Although only about 50% of people who have Lyme ever get a rash, a bulls-eye rash is a definite sign of Lyme disease. The rash alone merits treatment. Get photos of your rash. Place something near it, like a coin or ruler, before photographing to give it size definition. This is important evidence that may be needed later.

    Lyme disease is a multi-system bacterial infection caused from the bite of an infected tick. It can cause many symptoms. The rash is only one possible symptom.

    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.

    200 mg of Doxy daily is not strong enough for Lyme. I believe the
    recommended dose is 300-600 mg daily. Getting the proper treatment early in the infection may reduce the chance of long-term complications. This is the best time to eradicate the infection.

    A few tips about 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.

    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 very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. 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.

    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.

    Hang in there okay?

     
    Old 06-01-2007, 06:12 PM   #3
    BarbaraH
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    Re: what can I expect?

    Hi Ticker!

    Thanks for the welcome and the boat-load of great information. I wish I'd read this earlier as it's Friday at 8pm where I am and the doctor's office is closed until Monday. Maybe I should up the dose of my Doxy??

    I didn't save the tick or take a photo of the bulls-eye rash.

    I have felt very tired today but chalked that up to the lupus. Could it already be fatigue from Lyme or a co-problem???? So soon???? If I get any more tired, I'll have to spend the days in bed or flat on my face. Bummer! I have to avoid sunshine with lupus, but will keep your cautions in mind. I'll copy/paste/print your post to help me remember it all.

    I guess I should ask you for the name of a Lyme doctor in the Richmond, Virginia area. I'll look at that sticky. My new internist said she'd look into it, but maybe she'll need a resource person...?

    Thanks again! Barbara
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    Last edited by BarbaraH; 06-01-2007 at 06:13 PM.

     
    Old 06-02-2007, 06:35 AM   #4
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    Re: what can I expect?

    Hi Barbara, I am happy to help.

    It is very likely that your doctor will not want to increase the dose. Many doctors follow outdated treated protocols.

    How did you remove the tick? For future reference, save it. It can be tested for disease at IgeneX Lab in Palo Alto, CA.

    Yes, you could be experiencing faigue from Lyme and/or co-infections. Lyme is a bacterial infection.

    Do be extra careful with Doxy. Some people who took it have even had their knuckles burned from the sun coming into the car when they are driving!

    Dr. Kenneth Singleton in Towson, MD comes very highly recommended. Dr. Mark Garzon in DC and Dr. Elizabeth Lucus in Timonium, MD are supposed to be Lyme knowledgeable, but I do not know if they are.

    I cannot stress enough how important it is to get the proper treatment early in the infection. This is the best chance to eradicate it.

    Good luck!

     
    Old 06-02-2007, 06:46 AM   #5
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    Re: what can I expect?

    Barbara,

    Hi again, I think you have replied to some of my posts on the lupus board before. I also live in Richmond Virginia (Mechanicsville) and have been thinking about getting further testing for chronic lymes disease. I have been diagnosed with UCTD but still ruling out lupus and or RA. I have been through 2 rheumatologist already in the Richmond area--would you be willing to share who it is you see, if you are happy?? Thank you. Sorry you are dealing with lymes on top of Lupus--how horrible! I hope you feel better soon.
    Kelley

     
    Old 06-02-2007, 09:12 AM   #6
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    Re: what can I expect?

    Hi -

    Ticker, I removed the tick with my fnigers as it wasn't attached yet and was moving around. I could see I had been bitten, but guess when I moved my clothes to check the intense itching, I interrupted or dislodged the tick before it attached itself to me. I trapped the tick beween layers of Scotch tape so I could look at it, and did see the head, but then threw it away. In the 4 days I've been on the Doxy 200md daily, the bite area has lost its pale ring and the reddened bite area is much smaller and less red. I plan to call my doctor on Monday to ask she get the treatment protocol from one of the doctors you suggested and will also give her the names of the two books you recommended. I am hopeful that I dodged this bullet and we're getting our yard sprayed. Hope that helps.

    Kelley, I remember you and am near Courthouse Rd and 288. My new internist is Dr. Shah at St Francis. She refers her lupus pts because she feels they get more current care from rheumies and she's going to arrange for me to be seen by a doctor who is with MCV and has an office near Stoney Point. I should hear about that next week. I've forgotten his name.

    Wishing you well! Barbara
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    Old 06-02-2007, 10:22 AM   #7
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    Re: what can I expect?

    Hi Barbara,

    I used to see Dr. Coutlakis at Johnston Willis Hospital (rheummy) I heard that Dr. Jesse in the same practice was excellent. (I couldn't switch to him after I had seen Dr. Coutlakis--and he was too far-wanted someone closer to my new house) We moved from chesterfield county to hanover, and now I see Dr. Maestrello (rheumy) at henrico dr's hospital off of parham rd. I havn't been seeing him that long, so I wondered If you liked who you were seeing. let me know if you do. How long have you had Lupus?? I am a nurse and work at MCV in the PICU AND NICU. Take care, I hope you get the help you need on Monday with the Lymes.
    Kelley

     
    Old 06-02-2007, 10:38 AM   #8
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    Re: what can I expect?

    Hi Barbara. It may have been another tick that bit you. For future reference, the only safe way to remove an attached tick is with tweezers only. Grab the mouthparts as close to the skin as possible and pull straight back. Save the tick for testing.

    Never remove it with your fingers as this makes it like a syringe. Also, some diseases like Rocky Mountain Spotted Fever can be contracted from touching the tick. Also, never put any substance on it (Vaseline, alcohol etc.) and do not burn it with a hot match. These methods irritate the tick and increase the risk of infection.

    Treating your yard is a good idea. Also from what I understand, if you keep your grass mowed regularly and if it gets a lot of sun, this reduces the chance of ticks by 70%.

    Dr. Burrascano's guildelines are found on-line, they are not in a book.

    Last edited by ticker; 06-02-2007 at 10:39 AM.

     
    Old 06-02-2007, 03:47 PM   #9
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    Re: what can I expect?

    Ticker, More good information!!! As it happens, our lawn mower has been in the shop for 3 weeks and the grass is long, but we also have about 2 acres of woods. Can't mow that or treat it or the deer. I'll spray my clothes when I'm off Doxy and can go walking again. Thanks so much.

    Kelley, I was dxed w/lupus 8 years ago, but had been tired for about 2 years before that. We moved here from TX 5 years ago and I haven't been able to work since because of fatigue. My last 2 years at the center in TX was problematic because of my absences and our small staffing. No one here wants to hire me because I cannot be dependable in attendance or lasting the shift. Bummer! Do you know of any sit-down jobs or are you reserving one for yourself in case you ever need it?! Just kidding. Hope you're doing far better than that! See you on the lupus thread.

    Cheers! Barbara Haener
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    Last edited by BarbaraH; 06-04-2007 at 03:19 PM.

     
    Old 06-02-2007, 08:44 PM   #10
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    Re: what can I expect?

    Hi Barbara. Regarding repellents, there are excellent ones you can get in the sporting goods section at Walmart for about $5.00 a can--one for your clothing and one for your skin. The brand name is Repel. The clothing one is called Repel Perma One Clothing and Gear spray. Repel also makes one for your skin.

    The clothing spray needs to be sprayed on your clothes at least two hours before you wear them. One application will last through five washings or up to two weeks. If a tick even walks on them, it will die instantly. You could wear the same set of clothes for gardening, etc. Make sure you read the labels completely. I do not think these are safe for children.

    Even though you cannot treat the wooded area, there are things you can do to create a barrier between where the grass and the woods meet. I highly recommend the book "Everything You Need To Know About Lyme Disease
    (2nd edition)" by Karen Vanderhoof-Forschner. There is an entire chapter on protecting yourself and your property.

     
    Old 06-02-2007, 10:15 PM   #11
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    Re: what can I expect?

    Hi Ticker -

    You are a wonderful fountain of knowledge!!


    I'll check for that product at WalMart. We have no small children, only one grown one here, but we're all on alert now.

    You had mentioned that book, but it's great to know there's more helpful info in it to help our property remain accessible to us. It's beautiful and I'd hate to hide in the house (after Doxy, of course) when I'd love to walk in the woods.

    I'm copying your replies so I can have all the information in one place.

    Thanks again! Barbara
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    Old 06-03-2007, 07:19 AM   #12
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    Re: what can I expect?

    You are welcome!

     
    Old 06-04-2007, 11:39 AM   #13
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    Re: what can I expect?

    Hi -

    Well, I talked to my internist today and faxed her office some of the information about LLD doctors, the newer more aggressive protocol of Dr Burrascano, and an approximate timetable of symptom progression that I found somewhere on-line. She was okay with increasing my dose of Doxy to 400mg/day and to increase the length of my tx to 6 weeks. I hope that does the trick! She wants me to get a Lyme blood test, too.

    Before the doctor would consider changing my dose of Doxy to 600mg/day she wanted me to see the Infectious Disease doctor in their building. Having read how few IDs and LLDs, I thought that probably non-productive.

    My doctor had done some research on tx and dose herself but had used their usual sources and not a wider search. I hope she'll take time to read the information I sent and to take the time to look at the several websites.

    What do you wise folks think about all of that? Suggestions? Concerns?

    Wishing us all well! Barbara
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    Old 06-07-2007, 06:13 PM   #14
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    Re: what can I expect?

    Me again -

    This afternoon I've been a fountain of tears. My grandmother would have called it "wearing my feelings on my shoulder". Is this just part of the upheavel as all of this is so new or is it a symptom?

    Insight, anyone?? Thanks.

    Barbara
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    Old 06-08-2007, 09:20 AM   #15
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    Re: what can I expect?

    Hi Barbara,

    Sorry you are not feeling well today...I can't offer much support in the way of whether or not it is a symtrom of lymes or not. All I can do is say that as you know, Illnesses provoke a lot of up and down emotional feelings. I also have been a emotional wreck lately..although feel better yesterday and today Lupus alone is so hard to deal with, and now this! So sorry for what you are going through. Maybe someone else more versed can help you out?? Maybe it's the antibiotics working??? I am glad you have crossed the hurdle with the Dr. about sending your labs out. Hopefully you will get some concrete answers and the help you need. I just dropped my Pred down yesterday and today..guess what...PAIN. I wish I had an answer as to why. Take care,
    Kelley

     
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