posted
New here. Been searching the Net all morning looking for info surrounding LD and have decided to park here a while.
Well, a little personal info is in order so here we go.
I cut my lawn on Monday evening. Found a tick Wednesday morning on the back of my knee. Carefully removed it with tweezers and examined it to ensure the head was intact (it was). Treated the bite area with alcohol. Thursday it began to itch around midday. I noticed it looked like a mosquito bite. Itching continued off and on. Today, it has faded to a light pink, is not very defined, but it has elongated in shape to about the size of a thumbprint. Not the scary 'Bullseye' or anything, but more than the look of a normal bite. It no longer itches and appears to be subsiding.
I understand that a rash is a good indicator of early stages of LD, but doesn't always mean it is EM. I also understand that it can look like associated irritation and in fact be EM. I did scratch it a good bit yesterday when it was itching and it seemed to get pretty inflamed as a result. As a sidenote, I have not experienced any other symptoms (headache, fever, acheing, etc.) that I am aware of.
I realize 'timing' is critical in treating, but also get a sense that problems surrounding misdiagnosis can occur from being too anxious and going down the wrong road with both testing and treatment. I may be wrong in what I have gathered thus far, so excuse my ingnorance if so.
Bottom line is, it has been 4 days since the probable bite time and I am gathering that I now could be in a critical time period related to the success rate of treatment. My simple question is....what should I do? Should I go to my Dr. and pursue the 6 week antibiotic treatment or wait and see if any other 2nd stage symptoms arise (scary)?
Sorry for being so long, and I'm sure tiring also, to hear the same newby questions. Thanks.
David
Posts: 14 | From Columbia, SC | Registered: May 2006
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
IMHO all tick bites should be treated prophylactically. If I were in your situation, I would try to get high dose antibiotics for six weeks, as you suggested. You are in your window of opportunity to not become chronically ill. Don't blow it.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
David,
Good for you to do research on this. I'm not a doctor, so this isn't real medical advice.
I don't know about anybody who has problems because they treated Lyme early, or treated it early when they didn't get infected. The problems arise when you don't treat it early or you don't treat it strong enough or long enough at the beginning.
If you do have Lyme and you wait until you have more symptoms, then the bacteria will be harder to get rid of. As somebody who was not treated early, I can tell you that you don't want to go down that road.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Thanks for the info. So, if I go to my Dr. to pursue treament for LD, what can I expect. What is the specific antibiotic I should expect to see prescribed?
Posts: 14 | From Columbia, SC | Registered: May 2006
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
You should want doxycycline first as it can treat both Lyme disease and a couple of the other tick-borne diseases that could have been transmitted at the same time.
You should be sure that you are treated for at least 4 to 6 weeks.
You can find lots of good information here www.ilads.org
Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Agree, get your doctor to prescribe Doxycycline for 3 months. If you don't have LD it won't hurt you but if you do it will help tremendously.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
My tick bite was a very faint pink and elongated - I thought perhaps I just had a weird flea bite or had skinned my shin (I was feeding a cat when this happened).
I have since found a photo of this rash in a Lyme book.
I did not get any symptoms until seven months after the bite.
By then, the disease and multiple coinfections had already spread throughout my body and brain.
I agree with the other posters - better to be safe than sorry.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
DON'T let this window of opportunity to stop this horrific disease in its tracks. Treat with 400-600 mg of doxy/day, divided doses. Take on a full stomach with a full glass of liquid.
You may need to see more than one doctor to get adequate treatment.
Wait and see is a recipe for disaster. MANY doctors make this mistake.
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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posted
Well, I just got back from the Doctor. He only would prescribe the Doxycycline for 14 days. 28/100mg pills twice a day. I tried to express my concern over being 'safe than sorry' in wanting to take a 6 week course, but he insisted quite matter of factly that it is easily treated and this should be fine. Without extenuating symptoms, I'm sure he will be difficult in trying to further the treatment. So, what now?
Posts: 14 | From Columbia, SC | Registered: May 2006
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
You are running into what we've all run into. Regular primary care physicians and infectious disease doctors go by the old infectious disease medical school textbook guidelines that a short course of Doxy will cure Lyme.
I would suggest you go to www.ilads.org and print out all the guidelines and information about using higher-dose, longer-term Doxy. Or look in the Newbie archives on this site.
Also, if you can find what is known as a Lyme-literate MD (LLMD is how we abbreviate it here when we chat), doctors who are truly knowledgeable about treating Lyme would be more in tune with the dosages that are needed. Unfortunately there are few of these doctors throughout the U.S.
You could post in the Seeking a Doctor category on this site asking if there is a LLMD anywhere near you.
Good luck, Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
Let me repeat-you may need to see more than one dr to get adequate treatment
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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bettyg
Unregistered
posted
So HAPPY you found it, been doing thorough research, and asking us vital, RUSH action questions.
Yes, also go to support groups, left hand column & look for your state. Call or email a support group leader. Who would recommend?
Yes, you need more than 2 wks. abx. IF you have lyme, YOU CAN BE CURED with enough antibiotics. I can NOT be cured, but hope to go into remission. Lyme has sucked the life out of me these last 37 years; don't let it do this to you too!
Here are some newbie links for you. Good luck.
Welcome to this 24/7 LYME support group board!
Here's TREEPATROL's and Tincup's combination newbie links.
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Burrascono's 2005 info first; you will come back to this often.
Extensive info in Treepatrol''s newbie links about the meaning of WESTERN BLOT IGM/IGG test results from Igenex! Be sure to read or print this info IF Igenex tested you ok!
Also, see Cheryl''s extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-12 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn''t cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
EYE SENSITIVIES & NOIR, no infrared sunglasses info., 2-28-06 updated YES, I have what you have! Are you on doxy too? That made my extreme eyes
200% MORE sensitive than they we were earlier. I learned a lot about eye sensitivity/lighting on www.marshallprotocol.com board.
Look for AUSSIE BARB'S EAST FINDER and then eyes/sunglasses, etc. Wealth of info there.
I ordered the NOIR sunglasses. 2-26-06 corrected wrong email to:
mention you have lyme and marshall protocol, they will give you 20% off! I'm NOT on MProtocol, but mention it anyway. I was on their new board almost 12 months!
Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
from LOU to Betty on LONG web links and Thank You Lou!: "If you hit the return key in the middle of a link, I don't think it will be clickable anymore. An alternative that maybe Betty should be telling people about is the tiny url website. I have it on my tool bar at the top of the page and use it for those incredablylongwebsiteaddresses.
All you have to do is ask tiny url to produce a short version, which it will do with a unique address, which you then use instead in your post. Works just the same when clicked! Here is the website, spread the word!
3-1-06, fyi, I tried dragging tinyurl to my toolbar without success, so that''s why I currently have LONG addresses vs. short tiny ones! I''ll keep trying.
Tincup posted March 8, 2005, 2218 Lyme Disease Survey Responses February 27, 2005 - March 9, 2005 1. How many doctors did you have to see before being properly diagnosed? 112 responses Average number of doctors consulted before being diagnosed- 14 Answers ranged from 1- 120 different doctors 2. Have you had problems getting insurance to pay for doctors or treatment? 87 responses Yes- 63 No- 24
3. Have you lost income because of Lyme disease? 106 responses Yes- 99 No- 7 4. How much does it cost you (average) per month for Lyme related expenses? 61 responded Average cost per month per patient- $4,472.49 Low- $500.00 High- $21,492.00
5. How many different medications do you take per day? 77 responded Average - 14 different medications per day Low- 3 High- 25
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Like the others said -
keep trying drs. till you find one that will treat you adequately.
Best way would be to get yourself to a llmd (lyme literate dr.) I know this is costly and a probaly going to take traveling -
but if you have lyme and dont treat it right -
You will pay so much more.
Make sure your antibotic is for a high enough dose and for long enough.
posted
I plan on talking with my regular Dr tormorrow at church. He was not in the office Friday when I went and I ended up having to see another Dr.
I hope to get him to agree to extend my treatment out to 6 weeks at a higher dose, say around 400mg. If so, after having completed the treatment, what should be my next course of action. Should I just remain vigilant in watching for acute symtptoms?
Posts: 14 | From Columbia, SC | Registered: May 2006
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Carol B
Unregistered
posted
I went to my primary doctor ,feeling quite ill, and exhibiting the famous bullseye rash-actually my third-I thought they were spider bites.
Blood work confirmed I had lyme.Sometimes in early lyme it does not show up in bloodwork.
Doctor was impressed that I had a fading EM and had me show it off to the other doctors-like he had won the prize for the day.
I was a bit disconcerted that he had to look up treatment for Lyme in a reference book to see how to treat it-which he did -for two weeks on normal dose Ceftin-since I am allergic to Doxy. When i was not better he prescribed one more week-and declared I was cured.
That was two years ago- I have since been released from work on disability because of serious health issues.
I finally went out of network to an LLMD, who was going to treat me for clinical symptoms. My blood work shows that I still have active lyme.
Bottom line- get thee to an LLMD NOW if at all possible.
posted
Wow. for some one that is this on top of everything, I can't stop thinking that maybe you saved the tick. I mean, I wasn't this educated about Lyme even after I was diagnosed with it.
You could always have the tick sent off to see if it was even a carrier of the disease. That way. you're not running yourself ragged and introducing your body to all kinds of crappy antibiotics for nothing. I mean, isn't it safe to say, that if the tick didn't have it, you don't?
-------------------- Sometimes when I say �Oh, I�m fine� I want someone to look me in the eyes & say �tell the truth�
TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
Knowing what I know now about lyme disease, and NOT being one of the fortunate ones to actually see the tick that bit me,
I would not "wait and see" which means not only do you have the disease, but that it has disseminated and you may have just d yourself for the next few years.
I would get on antibiotics immediately and yes, stay on them. The choice, while yours, does seem rather clear.
Abx now... and possibly nothing will ever come out of it.
Or.. abx later... when the infection has taken hold on your body.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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posted
As of this morning, the rash is very quickly disappearing. Yesterday, it was at its worst. It had become more red and had increased to about the size of a baseball. This morning, it was not as red, but still about the same size. Now, just within 5 hours it is all but gone. I am still interested in trying to get my Dr. to extend my treatment of Doxy out to 6 weeks at a higher dose, but in the interim, would it be advised to take what I currently have prescribed to me and increase my dose to say 3 times a day (300mg total), understanding that it will only last about a week and a half at that rate. If I'm unsuccessful in getting my Dr. to extend the treatment, that may be all I get until I can resolve the situation.
In other words, would it be better to have a more intense, but shorter treatment or stay with the current dosage of 200mg/day for 14 days?
It is a shame to consider that my success for prevention at such an early text-book stage, hinges on just 4 more weeks of treatment using a $20 antibiotic for which is 'no skin of his back' to prescribe.
Posts: 14 | From Columbia, SC | Registered: May 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
In my own case, I had a tick bite and rash in 1996 and was treated wtih a short course of antibiotics -- 2 or 3 weeks.
A few months later, I developed flu-like symptoms but certainly didn't connecct that with the rash.
Over the next 9 years, my symptoms got more bizarre and progressively worse, until I could barely walk and had severely compromised mental functioning. I started treatment last June.
I know this only echoes what others have said, but if I'd known then what I know now about this disease, I would have done anything I possibly could to find a doctor who would treat me NOW with at least 10 to 12 weeks of antibiotics.
This is a stealth disease. As azure said, if you take the antibiotics now, even at a high dose for three months, it's not going to hurt you, but it will likely stop the disease in its tracks. That's what you want to do.
If this means flying or driving to another state to see someone, I'd do it, if I were you. This is one nasty disease -- one I wouldn't wish on anyone.
Keep us posted.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
This is not meant as medical advice
I wouldn't change the dosage on my own
Too short of a treatment or two low of a dose is useless.
well I can tell you from my expereince that if the treatment wasn't long enough or the dose wasnt high enough -
I would have not ended up any better off if I was taking pez (candy)
If your dr refuses to give you the appropriate and necessary treatment find another one OR find a llmd.
Be careful while on the doxy - it can make your skin burn VERY easy.
posted
Thanks once again for all the great advice everyone has given me.
Update:
Went back to the office this morning to see my regular Doctor, as he was not in the office Friday. I expressed my concern regarding the short/low dose treatment the other Dr. had prescribed. He seemed very understanding and agreed based on the EM pictures from over the weekend that, we should indeed kick up the dosage..Hooray!
So here's the lowdown. The rash is all but gone. He has prescribed me an additional 80 pills (100/mg). He wants me to take 400mg for the next 10 days and then drop back to 200mg for 20 more days. I still have 20 from the prescription given Friday. 100 total.
Does this sound like a good course of treatment or should I just take 4 a day for 25 days?
Thanks again
Posts: 14 | From Columbia, SC | Registered: May 2006
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You have been very lucky to find such an understanding doctor. He may have very well prevented you from suffering long term illness.
Best Regards
Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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