posted
I have become the "go to" person on Lyme in my area with my long fight with Lyme and my wife being involved in so many charity and community affairs groups in Kansas City. Basically, half the city knows I have Lyme disease. I just received a call from the mother of a 10 year-old boy that was bitten by a tick 14 days ago. The tick was small (thus, a higher chance of carrying Lyme) and completely removed (but not saved).
The mother has watched the bite knowing of my situation (I wish she had called when he was bitten) and the red bulls eye appeared today - most pronounced. She obtained a prescription of an antibiotic for two weeks but did not have it with her. She just knew "two weeks". She thought it was 200 mg a day.
I told her I thought if someone bitten was administered 400 mg of doxycycline within 30 days of being bitten the probability of a complete cure is almost 100%. I realize "the sooner the better" - as I say, I wish she had called sooner. Both of my LLMD's will NOT write a prescription without a full "work-up" meaning tests going to IGeneX, etc. Two months AFTER being seen. The young man wouldn't have a prescrition from either of them for months.
A neighbor was bitten three months ago and one of my LLMD's who I am also friends with was almost in tears as I described my friend's symptoms after two weeks of being bitten (age 65 so symptoms come on fast. Left arm numb arm, neck locked in place and trouble walking) telling me the FBI had just left her office (again) and she could do nothing (other than put my friend in her appointment book for DECEMBER).
We "tricked" the system by her going to an internist of hers who knows zero about Lyme and over doing her symptoms and saying "a friend with Lyme told me not to leave your office without a prescription for doxycycline 400 mg a day for a month". And she kept saying that acting as if she couldn't even stand (she could but not well) until he gave in and she got her presciption. We hoped he'd ignore the CDC guidleines for one patient to get her out of his office. It worked. Unfortunately, she is now bedridden and in bad shape. Two weeks was too long of a wait.
Question: the mother is going to try the same thing at "Urgent Care: tonight if I receive an answer soon enough. Is the recommended dosage for a child 200 mg instead of 400 mg. No symptoms yet so I hope it works for this young man. Age 10: 200 or 400 mg??? Answer ASAP would be appreciated.
Thanks, Gary in Kansas
Posts: 133 | From Shawnee, KS | Registered: Sep 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I can't give a rah, rah, rah for not seeing a real doctor... but...
I value your answers at the top of the scale. I don't know who you are but your answers are always spot on. I'll call her and tell her 200 mg. She's on the way to "Urgent care 24/7" right now. The young man is half my weight.
Hope this works. If the doctor is stubborn and sticks to the CDC book he will refer to, she'll go from doctor to doctor on Monday until she finds one who just wants to get on to the next patient. This "game" is a game playing with people's lives. This is ludicrous. But reality. Thanks again, "Tincup".
Posts: 133 | From Shawnee, KS | Registered: Sep 2007
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posted
Could be mistaken, but I think Tetracycline is the one that can ruin kid's teeth.
Doxy is a deriveative of Tetra and doesn't hurt teeth AS BAD.
I must say I an surprised at the number of people who take Tetracycline....I would not for that reason.
Doxy 200 mg 2xd
Jan
-------------------- 3 Strains Mycoplasma and Chlymedia 2001. After treatment fine for all 2004. Major symptoms since 2005. Diag Aug 2008 Lyme. 400 mg/d doxy 500 2/d Ceftin Posts: 164 | From Texas | Registered: Jun 2008
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bettyg
Unregistered
posted
ALSO, take photos of the rash using coins or a $1 bill and include newspaper DATE so you can read when this was taken ok!!! ****************************
HERE IS THE INFO YOU WANT SPECIFICALLY!!! *****************************************
please go to dr. burrascano's 05 lyme treatment guidelines and print out pages 17-18 ,,, where it talks about dosages for KIDS and adults!!
posted
Dr C in MO told us that he avoids Doxy in children when at all possible. However, a few children must be treated using Doxy under special cases based on their infection/results to treatment. It is not often but it does happen. He has not had any teeth staining issues as long as Doxy is pulsed. Again, not a treatment for most but it can be done without bad side effects if needed and under special care.
Posts: 183 | From Texas | Registered: Nov 2007
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Thank you all for your quick response. I reached the mother before she saw a doctor. In fact, she decided to not see a doctor until Monday morning. I advised her of what I was told about doxycycline. She is familiar with amoxicillin saying her son has taken it before.
I have to say, this scared me. We are all just trying to help others but I could not have lived with myself if the young man had any adverse reaction to doxycycline.
In spite of the many people being bitten by ticks in my area this year, it seems almost all of the doctors here know almost nothing about the disease. Which is why people call a friend who calls a friend and eventually calls me. Some doctors don't even recognize a classic tick bite (even if the patient saved the removed tick) with the bright red bulls eye marker a week, or so, after the the actual bite.
Most still don't prescribe ANY antibiotic nor do they have the tick tested (it is just discarded). Most do NOTHING unless there is a spreading infection with pus showing still present.
Several patients been given an "info sheet" on Lyme from (I think) the CDC. I've seen and read it but don't have a copy. It says Lyme is very rare, WAY over diagnosed and 99% of the time the appearance of a red bulls eye around an "insect bite" means nothing. The information sheet says, if the "insect" was completely removed and the "wound" is quickly treated with medicinal alcohol or some other disinfectant and no sign of an infection remains, the chances of a future mdical problem is close to zero. It refers the person to the CDC, FDA and the LDA if the reader has further questions.
Of people who have called me in the last few weeks, one was told it was a "sun reaction" and to use more sun tan oil. Another was given two (just two) doxycycline pills and told to take one that week and one the following week. There have been several others given equally wrong treatment or nothing at all. All are now on the appointment books of Dr. B or Dr. C in KC but Dr. B is over a year out for new patients and Dr. C is booking new patients for December.
One mother, who was give my name to call, told me 12 of 16 boys in her son's Boy Scout troop had tick bytes and had developed red bulls eyes (all but one being leg bites) after returning home from camp in June. It appears to be at an epidemic level in Kansas City this summer unless it is true that many with the bulls eye rash really do get better on their own and do not become infected with Lyme. She told me only one other mother had taken her son to a doctor. She said neither doctor did a thing other than to say to come back if the "rash" didn't "go away" on its own.
But this possible mistake on my part scared me enough, mainly because it involved a child, I am no longer giving advice to anyone. I will stick to trying to get better myself. I'm losing that battle very quickly in spite of the best efforts of Dr. C and Dr. B and my spending many hours a day reading and reading (and reading).
The is no valid treatment, medication, antibiotic, IV, etc. listed in the archives of Lymenet I have not tried these last five years. Yet, two nights ago, I woke up at 2 AM in the usual extreme pain and spent 30 minutes crawling to the bathroom being unable to walk. $300,000 later, countless hospital stays, surgeries (wrong guesses by doctors) and several extended antibiotic IV's, I am worse now than I was five years ago when first correctly diagnosed.
I currently take 41 pills and liquids three times a day plus seven shots at doctor's offices. Yet every periodic test shows my illness is still getting worse. I have almost decided, if the next tests of IGeneX (plus one other lab doing a CD57 test) this fall show I'm still getting worse, I will stop all medications except for as many pain meds as I can talk my doctor into writing prescriptions for. ,Because I have taken opiate based pain meds for so long I already have to be give extreme dosages to have any effect at all.
My internist, who is very sympathetic and understanding towards me, tells me I am at the level of pain meds that would put "normal" people into a coma or even kill them. I fear the day the CDC (or whoever) audits his records and finds my file. Cutting me off of pain meds would be a death sentence.
Thank you again to all who quickly replied. Every person on Lymenet are the absolute best! Those who wish to, please join me in praying for this young man.
Posts: 133 | From Shawnee, KS | Registered: Sep 2007
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bettyg
Unregistered
posted
wotm,
thanks for the update; wandered if you got to her soon enough for RIGHT MED!
wow, that's a lot of pills/shots daily!! take care of yourself, and thx for helping others while you are fighting the big battle! *****************************************
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posted
dbourne- can you possibly tell me more about the special circumstances of using doxy in children?
My son (9.5) was just diagnosed. His pediatrician (not LLMD...yet) has prescribed 200mg doxy a day along with Ceftin (not sure on the dose).
When I mentioned the teeth-staining issue and the fact that my son has delayed bone age (so his teeth are even younger than 9.5yr)...
I was told that the doxy was generally only contraindicted (sp?) in kids younger than 8yr but because of his delayed bone age, we could switch to amoxicillin.
He is allergic to amox., though, so it ended up we stuck with the doxy.
I was told, however, that even though the teeth-staining is an issue in the younger kids it is only a "rare" issue. That the risk was pretty small.
I'm not too horribly concerned because like I told the doc's office... I'd rather gray teeth than Lyme any day!
Chris
Posts: 155 | From Texas | Registered: Oct 2007
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