LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » My 5yo bitten today, Dr. says do Nothing!

 - UBBFriend: Email this page to someone!    
Author Topic: My 5yo bitten today, Dr. says do Nothing!
TS96
LymeNet Contributor
Member # 14048

Icon 1 posted      Profile for TS96     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi.

I just got off the phone with the Ped Dr. Dr said just clean the site off and wait.

She got bit in the ear and it was attached and started to get fat. I pulled it off with tweezers really close to the skin. It left a little red mark but I think I got the whole thing.

I put it in a baggie with a wet cotton ball and will call Igenex tomorrow for a tick kit to get it tested.

What do I do in the meantime. Do I give her some of my Doxy? Dr won't give me any. She's 45 lbs.

Oh and the Dr. said the tick has to be attached for 36 hours for Lyme to be transmitted. It sounded as if the Dr. was reading a cue card. I don't think they have a clue.

Any thoughts?

Thanks

--------------------
Bart Henslea 1976
Fibro/CFS/arthritis 2004
Lyme diagnosed 2007
3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good.

Posts: 647 | From NY | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
sixgoofykids
Moderator
Member # 11141

Icon 1 posted      Profile for sixgoofykids   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
How old is she? Might be too young for doxy. Do you have any amoxy? Or Zith?

--------------------
sixgoofykids.blogspot.com

Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
TS96
LymeNet Contributor
Member # 14048

Icon 1 posted      Profile for TS96     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi Six.

Yes I've got Zith but no Amoxy. She's 5yo and 45 lbs. I've got the 250 mg tabs.

--------------------
Bart Henslea 1976
Fibro/CFS/arthritis 2004
Lyme diagnosed 2007
3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good.

Posts: 647 | From NY | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
C.M.L
Member
Member # 15715

Icon 1 posted      Profile for C.M.L     Send New Private Message       Edit/Delete Post   Reply With Quote 
Children aren't suppose to take Doxy. Read your label, it even says that I think.

I would wait. If it got fat(full of blood) is that the same kind of tick that even carries lyme?

?? jmo

Posts: 22 | From N.East CT | Registered: Jun 2008  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
CML... ALL ticks attached long enough will get "fat" with blood. ANY tick can carry diseases and most DO!

TS96, I don't know what to tell you. You can't give her doxy. &%$# doctors!!!

I wonder if a walk-in clinic would give her anything?

36 hours?... he's nuts

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95978 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
adamm
Unregistered


Icon 1 posted            Edit/Delete Post   Reply With Quote 
Don't know what you would give her, but I do know that you

should not "wait and see!"

IP: Logged | Report this post to a Moderator
TS96
LymeNet Contributor
Member # 14048

Icon 1 posted      Profile for TS96     Send New Private Message       Edit/Delete Post   Reply With Quote 
I haven't given her anything yet.

Dr. won't be in the office till Wed. I am going to insist she get something just in case.

I forgot... how many days should I wait to have her tested? I know a positive doesn't show up right away.????? [confused]

--------------------
Bart Henslea 1976
Fibro/CFS/arthritis 2004
Lyme diagnosed 2007
3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good.

Posts: 647 | From NY | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
hcconn22
LymeNet Contributor
Member # 5263

Icon 1 posted      Profile for hcconn22   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
No one knows for sure how long a tick needs to be attached to transmit Lyme or other parasitic infections.....

Your doctor is quoting a study that was not that highly rated.

Also co-infections may be transmitted as well--- and of course the study did not ever consider this.... there are also many factors that these great scientists did not consider.

At 5 years old it is hard to describe your symptoms.... so I would be on very close watch.

I would also get 2-3 weeks of abx.... because I don't believe 99% of physicians when it comes to tick borne illness and Lyme.

This is a topic that no one really knows for sure.

And if you've been ill with Lyme you know how bad it can be... and how you can be asymptomatic for months or years.

Again no one really knows for sure.

Take care,

--------------------
Positive 10 bands WB IGG & IGM
+ Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest

And still positive ELISA and WB two years after IV treatment
http://www.lymefriends.org/profile/blake

Posts: 607 | From Tick Town, Connecticut | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
TS96
LymeNet Contributor
Member # 14048

Icon 1 posted      Profile for TS96     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thank everyone.

What can I print out for the Ped Dr. to show them that it would be wise to get at least a 2-3 week coarse of abx?

--------------------
Bart Henslea 1976
Fibro/CFS/arthritis 2004
Lyme diagnosed 2007
3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good.

Posts: 647 | From NY | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
How many treatment failures have we heard about HERE on this site regarding 3-4 wks of immediate treatment?

Hundreds, if not thousands!!!!

IF it were ME, I'd insist on 6-8 wks of treatment. I'm not a child, but not sure if that makes any difference when it comes to treatment.

I think you have to wait at least a month for a test to be valid.

Anybody have some studies for TS???

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95978 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Allie
LymeNet Contributor
Member # 10778

Icon 1 posted      Profile for Allie     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'm mostly a straight shooter, but my advice for you is to flat out lie and say that the tick was attached for 36 hours! If that is what the MD needs to give Tx, by golly give it.

You can send the tick to Igenex without getting a kit. When you call they will explain that you need to put it in a ziploc with a moist cotton ball. Then you can write a letter with the tests you want (Borrelia b., babs, bart, etc...). I did this for my son.

Don't wait. Get her on meds!

Allie

Posts: 300 | From Northeast | Registered: Dec 2006  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
It takes 3 weeks to get test results back on a tested tick thru Igenex.

I sent a tick to them for testing several years ago. It came back neg for lyme and babesia. Guess who got sick 9 days after the bite? [even though I was on doxy from Day 1.]

Lesson... Don't rely on testing!!!!

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95978 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
tailz
Unregistered


Icon 1 posted            Edit/Delete Post   Reply With Quote 
quote:
Originally posted by Allie:
I'm mostly a straight shooter, but my advice for you is to flat out lie and say that the tick was attached for 36 hours! If that is what the MD needs to give Tx, by golly give it.

My parents taught me to never lie, but Lyme has liberated me from following the rules, and I agree with Allie - LIE! LIE! And LIE some more! Tell the doctor she kept scratching her ear for 3 or 4 days, but that you were too busy and didn't look. Or tell him the whole family spent the week cleaning meat off a deer because you were hungry and the deer was infested with ticks - be creative!

Also, DEMAND antibiotics. If he won't give you what you want, THREATEN A LAWSUIT. This is how I got an epipen out of a doctor when I was having allergic food reactions when he wasn't going to give me one, and I've never regretted it.

When you're life is in danger or the life of someone you love, anything goes - I learned that lesson late in life, and I only wish I'd learned it sooner.

When you're standing there with your ribs hanging out, your eyebrows and hair are falling out, and no doctor will help you, yeah, you kind of find new methods.

IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

Icon 7 posted      Profile for Tincup         Edit/Delete Post   Reply With Quote 
Hey TS...

I agree with most.

1. Do not wait and see. Never wait and see.

2. Ticks can pass Lyme to children with soft tender skin much quicker than to adults. In a matter of hours the spirochetes can be in the spinal fluid.

3. It doesn't have to be a deer tick to carry Lyme. And ticks can carry many known and unknown infections.

4. Do NOT depend on the tick test to make a decision to treat or not. They can also miss the infections.

5. Take in a copy of ILADS guidelines with you and tell the ducks you want to follow that standard of care (YOU as the patient have a choice) and NOT the IDSA guidelines. If they ask why... tell them you want YOUR medical information to come from people who haven't been investigated for illegal practices and found guilty.

Good luck!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

Icon 4 posted      Profile for Tincup         Edit/Delete Post   Reply With Quote 
PS... I would NOT give a child any antibiotics belonging to someone else without a doctors supervision.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200

Icon 1 posted      Profile for Michelle M   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
Do you have a "doc-in-a-box" in your area -- otherwise known as a walk in clinic?

I.e., an urgent care place?

I would go in and tell them that you have only now realized why your child's been itching and complaining for DAYS!!!!

And you would like at least several weeks' worth of amoxicillin appropriate to your child's age and weight.

Additionally, you would like her to be tested for coinfections through a lab such as IgeneX.

Just for fun you might ask them what coinfections they commonly see?

That should be good for a laugh.

But don't ask till you have your prescription!!

(The answer is: They won't have a frakkin' clue!)

But YOU will, since you can read over the ILADS treatment guidelines.

Prevention is SOOO much better than trying to deal with cure once it is disseminated.

I'll hope your child doesn't have it at all! But blood tests at this point are completely worthless as your child's immune system hasn't had a chance to mount an immune response. So any doctor who claims he needs to "test" is a nut job. And any doctor who claims he needs to wait for a "bullseye rash" is equally nuts since they don't always form.

Hang tough!!

Michelle

Posts: 3193 | From Northern California | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
hcconn22
LymeNet Contributor
Member # 5263

Icon 1 posted      Profile for hcconn22   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
Back again.

We have all been failed by the traditional medical doctors. You can print all the info you want, but most physicians feel they know more than anyone else-- because...... they read a few medical text books and took a test.

Tell them that your kid had a rash, but it went away!!

Dont let ANY doctor tell you about Lyme-- unless they ONLY treat Lyme. It is that complex.

--------------------
Positive 10 bands WB IGG & IGM
+ Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest

And still positive ELISA and WB two years after IV treatment
http://www.lymefriends.org/profile/blake

Posts: 607 | From Tick Town, Connecticut | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830

Icon 1 posted      Profile for lymebytes   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
Yes, my thoughts are getting him to an LLMD asap, the sooner the better. He needs Doxy (sometimes kids use amoxi) now!
Don't mess w/this or wait for symptoms.

--------------------
www.truthaboutlymedisease.com

Posts: 2003 | From endemic area | Registered: May 2007  |  IP: Logged | Report this post to a Moderator
Larkspur
LymeNet Contributor
Member # 5131

Icon 1 posted      Profile for Larkspur     Send New Private Message       Edit/Delete Post   Reply With Quote 
I got bitten at 5 years old (to start) and not diagnosed until 33!

Of course do not give your daughter anything whith out a (knowlegdable) doctor's supervision but I would strongly advocate leaving no stone unturned - not a "wait and see" situation in my opinion....

--------------------
"We must be willing to get rid of
the life we've planned, so as to have the life that is waiting for us" - e.m. forster

Posts: 921 | From PA | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


Icon 4 posted            Edit/Delete Post   Reply With Quote 
,,
i knew i HAD this in my newbie package about kids; someone found out thru pharmacist how much to give by kid's weight....


Print & read Dr. Burrascono's 2005 lyme treatment guideline info first; you will come back to this often ....long-term antibiotics.


http://www.ilads.org/files/burrascano_0905.pdf

It's 33 pages of excellent info from one of the best LLMDs.

p.17: Antibiotic Choices & Doses From CBB:

Amoxicillin-Children: 50 mg/kg/day divided into q8h doses.

My pharmacist did the math for me, & it means:
35 lb child - 800 mg per day
70 lb child - 1,600 mg per day
[1 kg=2.2046 lbs]

p.19: Treatment Categories

Early Localized - single erythema migrans rash with no constitutional symptoms.

Children: oral therapy for 6+ weeks.


another member wrote this after posting above...

According to Dr B's recommendation, your son did not have an adequate amt per day or long enough treatment to eliminate the bacteria.
Take a copy to your Dr and see if (s)he will treat according to these Guidelines.


Do whatever it takes - beg, plead, throw yourself on the floor and cry if necessary


good luck; DO NOT WAIT!!! you want to CURE your child; not end up like us here!! [group hug] [kiss]

IP: Logged | Report this post to a Moderator
cjnelson
LymeNet Contributor
Member # 12928

Icon 1 posted      Profile for cjnelson     Send New Private Message       Edit/Delete Post   Reply With Quote 
5. Take in a copy of ILADS guidelines with you and tell the ducks you want to follow that standard of care (YOU as the patient have a choice) and NOT the IDSA guidelines.

If they ask why... tell them you want YOUR medical information to come from people who haven't been investigated for illegal practices and found guilty.


Now that is a statement if I ever read one!!!!! [Big Grin]

--------------------
Seeking renewed health & vitality.
---------------------------------
Do not take anything I say as medical advice - I am NOT a dr!

Posts: 830 | From TN | Registered: Aug 2007  |  IP: Logged | Report this post to a Moderator
Geneal
Frequent Contributor (5K+ posts)
Member # 10375

Icon 1 posted      Profile for Geneal     Send New Private Message       Edit/Delete Post   Reply With Quote 
My children have been treating for Lyme for over a year on zithromax.

The dose is 200mg per 5ml.

They each have gotten one and one half teaspoons daily.

Liquid meds are much easier to give althought the liquid zithromax is definitely "yucky".

Go after it. Fast.

Sending you and your child positive thoughts and prayers.

Hugs,

Geneal

Posts: 6250 | From Louisiana | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
RoadRunner
Frequent Contributor (1K+ posts)
Member # 380

Icon 6 posted      Profile for RoadRunner     Send New Private Message       Edit/Delete Post   Reply With Quote 
My friend got bite by a tick and took it off with in one hour because we were inside and he had nothing on arm then we went in for a drink and it was on arm and got a bulleye rash from it.

ONE HOUR get this kid on treatment fast.
If you have to buy it online. It will save your kid from missing out on life.

RR

--------------------
"Beep Beep"

Posts: 2630 | From ct | Registered: Nov 2000  |  IP: Logged | Report this post to a Moderator
TS96
LymeNet Contributor
Member # 14048

Icon 1 posted      Profile for TS96     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sorry I haven't got back sooner. Had a thunder storm and had to unplug the puter.

I've put in a call to Dr. J and My LLMD and see if what they say.

Thanks everyone.

--------------------
Bart Henslea 1976
Fibro/CFS/arthritis 2004
Lyme diagnosed 2007
3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good.

Posts: 647 | From NY | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
TS96
LymeNet Contributor
Member # 14048

Icon 1 posted      Profile for TS96     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi again. My Ped Dr. is out till Wed.

I called the Dr. on call, a different one from yesterday. Thank God.

I did not lie. I just told her I noticed the tick yesterday, and didn't have a clue when she got it. We live in a grassy wooded area and have been around horses and tall grass.

I quoted stuff off the ILADS guidelines and had no problems getting Amoxicillin for 30 days, even tho she said "there were no cases of Lyme in our county." YEA RIGHT!!!!!

I got the chewable in 500 mg 2 times a day. So that's 1000mg or close to it she said. Looks pretty close to what Betty quoted.

I think this sounds decent. What do you think?

I will follow up with our regular Ped Dr. on Wednesday and request a longer duration.

I'll let you know what happens.

Thanks

--------------------
Bart Henslea 1976
Fibro/CFS/arthritis 2004
Lyme diagnosed 2007
3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good.

Posts: 647 | From NY | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
TS96
LymeNet Contributor
Member # 14048

Icon 1 posted      Profile for TS96     Send New Private Message       Edit/Delete Post   Reply With Quote 
Just did the math on the conversion. Looks like she should have just over 1000mg or 1g amoxy a day. In 2 divided doses q 8hrs.

Looks just about right.

Dr. J's office called back just now. Says 1g in divided doses is appropriate for 30days. Look for symptoms if none then everything should be fine. If symptoms show continue treatment further.

Thanks everyone.

--------------------
Bart Henslea 1976
Fibro/CFS/arthritis 2004
Lyme diagnosed 2007
3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good.

Posts: 647 | From NY | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by Tincup:

5. Take in a copy of ILADS guidelines with you and tell the ducks you want to follow that standard of care (YOU as the patient have a choice) and NOT the IDSA guidelines. If they ask why... tell them you want YOUR medical information to come from people who haven't been investigated for illegal practices and found guilty.

Oh yes!! THAT is GOOD!

TS...So, did you get enough for 30 days?? If so, I'm over here celebrating!!! [Smile]

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95978 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
TS96
LymeNet Contributor
Member # 14048

Icon 1 posted      Profile for TS96     Send New Private Message       Edit/Delete Post   Reply With Quote 
yep We got the 30 days!!!

--------------------
Bart Henslea 1976
Fibro/CFS/arthritis 2004
Lyme diagnosed 2007
3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good.

Posts: 647 | From NY | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
susiecv
LymeNet Contributor
Member # 9702

Icon 1 posted      Profile for susiecv     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi there-
Did you read today's Rochester Democrat & Chronicle? Article on first page about preventative measures for mosquitoes & ticks. They are looking for stories to see if ticks are a problem this year. Supposedly only 5-10 cases of LD reported in Monroe County a year. Wonder how many undiagnosed??!!!
Send them a letter at DemocratandChronicle.com

Hope all goes well with your daughter-
Sue

Posts: 240 | From finger lakes, ny | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-

CONTROVERSY CONTINUES TO FUEL THE "LYME WAR"
By Virginia Savely, RN, FNP-C

*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.

EXCERPTS:

`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.


"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."

. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.

- FULL ARTICLE:

http://tinyurl.com/2dmvs2

The Clinical Advisor is a monthly journal for nurse practitioners and physician assistants in primary care. (home: - www.clinicaladvisor.com )

From the May 2007 issue of Clinical Advisor

CONTROVERSY CONTINUES TO FUEL THE "LYME WAR''
By Virginia Savely, RN, FNP-C


As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.

Controversy over the treatment of a particular disease is not uncommon. There are many illnesses for which there are different schools of thought and more than one treatment method--e.g., heart disease, prostate cancer, and breast cancer.

When it comes to Lyme disease, a bacterial infection caused by the corkscrew-shaped spirochete ,Borrelia burgdorferi, the battle lines are particularly distinct, and the opposing viewpoints reach vitriolic proportions, to the ultimate detriment of the patients.

Lyme disease, which is most commonly acquired through the bite of an infected tick, has been reported in every state and has become the most common vectorborne disease in the United States

. In 2005, the CDC received reports of 23,305 cases, resulting in a national average of 7.9 cases for every 100,000 persons.

In the 10 states where the infection is most common, the average was 31.6 cases for every 100,000 persons. The CDC estimates that the disease is grossly underreported, probably by a factor of 10.

Meet the players
****************

The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, and

the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties.


IDSA maintains that Lyme disease is relatively rare, overdiagnosed, difficult to contract, easy to diagnose through blood testing, and straightforward to treat (www.journals.uchicago.edu/CID/journal/issues/v43n9/40897/40897.html. Accessed April 6, 2007).


ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, especially when treatment is delayed because of commonly encountered diagnostic difficulties (www.ilads.org /guidelines.html. Accessed April 6, 2007).


Diagnosis: Where it all begins
*****************************

If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided.

However, Lyme disease is often missed during its early stage when it could be most easily treated (Table 1).


Since the deer tick is no larger than the period at the end of this sentence, it is not surprising that people frequently do not realize they've been bitten. In a hairy part of the body, the tick is almost impossible to see, and even when it is noticed, it is often mistaken for a mole or scab.

When the tick latches on, it injects salivary components that anesthetize the area and decrease inflammation at the site of the bite, leaving the victim unaware of the tick's presence and allowing it to feast undisturbed.

The erythema migrans (EM) rash is commonly known as the ``bull's-eye'' rash for its characteristic shape.

The CDC maintains that a patient presenting with a bull's-eye rash does NOT require testing for Lyme disease because the rash is diagnostic in its own right.

However, the rash does not always present in the classic pattern of concentric, round, red circles. EMs can be oval in shape and/or solid in color, with shades of pink, purple, and red.

The rash may or may not contain pustules, itch, feature a dark spot in the middle, or have a denuded center. The size varies from that of a quarter to 12 in or more.

Some victims develop a diffuse rash over the entire body. EMs are commonly misdiagnosed as spider bites, cellulitis, or ringworm. To complicate matters further, as many as half the people who acquire Lyme disease from a tick bite develop NO RASH at all.

Frequently, a clinician mistakenly assumes that there are no Borrelia-carrying ticks in the patient's geographic area and fails to include the disease in the appropriate differential diagnosis. Lyme disease should be considered regardless of where a patient lives.


Ticks are carried on numerous animals, including household pets, rodents, deer, and birds, so it is little wonder that Lyme disease-transmitting ticks are not confined to a few distinct geographic areas.

A travel history should be obtained to determine whether the patient has recently traveled to a particularly Lyme-endemic area (the northeastern United States, north-central United States, and the Pacific coastal region).

Most clinicians are not familiar with the varied signs and symptoms of Lyme disease (Table 2), and this contributes to misdiagnosis (Table 3).


Children may present differently than adults, with predominant symptoms being changes in behavior and school performance.


In affected children, parents typically report mood swings, irritability, obsessive-compulsive behavior, and new-onset attention-deficit/hyperactivity disorder. Physical symptoms in children may include fatigue, frequent headaches or stomachaches, urinary symptoms, and migratory musculoskeletal pains.


When a patient presents with a collage of seemingly unrelated symptoms, there is a natural tendency to assume that a psychological component is at play. Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.

The testing conundrum
*********************

The CDC is aware of the insensitivity of the tests for Lyme disease and encourages clinicians to use judgment rather than a test result to make the diagnosis (www.cdc.gov/ncidod/dvbid /lyme/ld_humandisease_diagnosis.htm. Accessed April 5, 2007).


As previously mentioned, however, most clinicians do not feel confident in making this judgment call and continue to look to unreliable test results for confirmation of disease.

The Western blot test
**********************

Because B. burgdorferi is an extremely difficult bacterium to culture in the lab, testing has relied on detection of antibodies to the organism. The Lyme enzyme-linked immunosorbent assay (ELISA) gives a titer of total immunoglobulin (Ig) G and M antibodies and is currently the accepted initial screen for suspected disease.

Since a screening test should have at least 90% sensitivity, the 65% sensitivity of the commercial Lyme ELISA should lead to its reconsideration as an acceptable screening tool .


The Western blot, which is commonly used as a confirmatory test for Lyme disease, is more sensitive than the ELISA.

While the CDC has published strict criteria for positivity on the Western blot to make a more exclusive cohort for epidemiologic purposes, it never intended for these criteria to be used for diagnosis. Unfortunately, the restrictive criteria omit several of the important bands on the blot that are highly sensitive markers for the presence of B. burgdorferi (see ``Interpreting the Western blot,'').


Clinicians should become acquainted with the relative sensitivity and specificity of each of the bands on the blot to make an appropriate assessment for diagnostic purposes.

A negative test based on epidemiologic criteria may be a positive test for diagnostic purposes.


Treatment dilemmas
******************

The Lyme spirochete presents a formidable adversary. With more than 1,500 gene sequences, B. burgdorferi is genetically one of the most sophisticated bacteria ever studied.


Treponema pallidum (the spirochete responsible for syphilis), for example, has 22 functioning genes whereas the Lyme disease spirochete has 132.


Borrelia burgdorferi's stealth pathology makes eradication of the disseminated organism a near impossibility.


Before the tick delivers its inoculum of spirochetes into the host, it injects a substance that inhibits the immune response, allowing the spirochete to gain a strong foothold. The spirochete itself secretes enzymes that help it to replicate and infect the host.


Once disseminated throughout the body, B. burgdorferi secludes itself and becomes difficult to detect through laboratory testing--and by the host's immune system. The bacterium may hide in its host's WBCs or cloak itself with host proteins.


Furthermore, it tends to hide in areas not usually under immune surveillance, such as scar tissue, the central nervous system, the eyes, and deep in joints and other tissues.


Phase and antigenic variations allow B. burgdorferi to change into pleomorphic forms to evade the immune system and antibiotics.

The three known forms are the spiral shape that has a cell wall, the cell-wall-deficient form known as the ``L-form'' (named not for its shape but for Joseph Lister, the scientist who first identified these types of cells), and the dormant or latent cyst form.


Encapsulating itself into the inactive cyst form enables the spirochete to hide undetected in the host for months, years, or decades until some form of immune suppression initiates a signal that it is safe for the cysts to open and the spirochetes to come forth and multiply .


Each of these forms is affected by different types of antibiotics. If an antibiotic targets the bacterium's cell wall, the spirochete will quickly morph into a cell-wall-deficient form or cyst form to evade the chemical enemy.


Borrelia burgdorferi has an in vitro replication cycle of about seven days, one of the longest of any known bacteria.

Antibiotics are most effective during bacterial replication, so the more cycles during a treatment, the better.


Since the life cycle of Streptococcus pyogenes (the bacterium that causes strep throat) is about eight hours, antibiotic treatment for a standard 10 days would cover 30 life cycles.


To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks.

Within the tick gut are hundreds of different types of pathogens. How many infect humans is unknown.


Some have been identified and are known to intensify morbidity and complicate treatment of Lyme disease.

Awareness of three coinfecting genuses in particular--Ehrlichia, Bartonella, and Babesia--has increased, and persistent infection with these organisms has been described.

Testing for and treating these coinfections has become part of the approach for clinicians who specialize in the treatment of Lyme disease.

Treatment methods
*****************

IDSA guidelines recommend treating certain high-risk tick bites with a prophylactic single dose of doxycycline. This is recommended only if the tick is clearly a deer tick that was attached for 36 hours or more, the patient was in an endemic area, and if treatment can be started within 72 hours of the time the tick was removed.

Most ILADS practitioners treat any high-risk tick bite with a full month of doxycycline.


If a patient presents with EM or has a positive Lyme test, IDSA guidelines recommend treating with either doxycycline, cefuroxime, or amoxicillin for 10-21 days.


All other antibiotics are specifically not recommended. After the prescribed amount of time, treatment is discontinued whether symptoms remain or not.


However, if symptoms remain severe after the patient has been off the antibiotics for a few months, treatment with another two to four weeks can be considered. One month of IV antibiotics is recommended for severe arthritis or neurologic disease.


IDSA stresses that persistent symptoms do NOT indicate chronic infection and that prescribing long-term antibiotics to patients unresponsive to the typical two- to four-week course is USELESS and potentially harmful.


``There is no convincing biologic evidence for the existence of symptomatic chronic B. burgdorferi infection among patients after receipt of recommended treatment regimens for Lyme disease,'' the guidelines state.


``Antibiotic therapy has not proven to be useful and is not recommended for patients with chronic (six months or longer) subjective symptoms after recommended treatment regimens for Lyme disease.''


Patients who continue to suffer from persistent fatigue, pain, and cognitive disturbances after a traditional short course of antibiotics are rare, the IDSA panel claims.


These patients have developed ``post-Lyme syndrome,'' probably due to an immune system that cannot shut down after the infection is gone. This syndrome can only be treated with symptomatic care and tincture of time.


ILADS, on the other hand, promotes the idea that the Lyme spirochete is very hard to eradicate and persistent symptoms are due to ongoing infection.


This organization's approach is to treat with antibiotics as long as symptoms remain. Off-label combinations are often used based on clinical experience.


Variable response to antibiotics and occasional antibiotic resistance are thought due to the fact that there are over 100 strains of B. burgdorferi in the United States and 300 strains worldwide
.

Since the Lyme spirochete is adaptive and morphs to a new cell type when under stress, clinicians who advocate aggressive, long-term treatment support giving two or three different classes of antibiotics at the same time and changing the treatment protocol every two to three months.


Higher-than-normal doses of antibiotics are given to achieve better penetration of both the tissue and the blood-brain barrier.

IM injections of long-acting penicillin or IV administration of antibiotics are recommended for patients with neurologic disease.

Precedent for the safety of long-term antibiotic use has shown that the benefits outweigh the risks.


According to ILADS, treatment is complicated by the frequent presence of coinfections, which can intensify symptoms and prolong treatment.

Therefore, antibiotics that target the coinfections are usually prescribed prior to or along with those that treat Lyme disease.

Table 4 lists treatment options used by ILADS clinicians to target the various forms of the B. burgdorferi bacterium, and Table 5 lists treatment options for the most common coinfections.


Occasionally, Jarisch-Herxheimer reactions complicate Lyme disease treatment. These symptom intensifications are due to elevated cytokines and toxins released during B. burgdorferi die-off.


Many patients notice that symptoms occur cyclically (every 21-28 days). When these intensification reactions occur, the treatment can be temporarily worse than the disease.


It is difficult to decide when to stop treating Lyme disease since there is no test that demonstrates a cure.


Because of the lack of simple culture techniques and the low sensitivity of antibody tests, a negative test does not rule out infection.

Treatment cessation is based on symptom resolution, which means that symptoms may return if the infection has not been eradicated.


The road ahead
**************

Rather than shy away from the complexities and controversies of Lyme disease, clinicians should welcome the chance to learn about this condition. Lyme disease is much more prevalent than most realize. Clinician education will reduce patient suffering and hopefully put an end to the ``Lyme War.''

------------------

For a list of references used in this article, contact the editor via e-mail ([email protected]) or telephone.


Ms. Savely is the owner of TBD Medical Associates in San Francisco. She is a nurse practitioner who specializes in treatment of Lyme disease and other tickborne illnesses.


-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-

I would fire your son's doctor. Get his file and walk away.

that 36-hour remark of his is wrong - so very wrong.
and ANY tick can carry lyme and other TBD.

Please do not just wait and see. If present, EARLY TREATMENT IS VITAL - You must have doctor who is up to speed on evaluation and treatment.

I am ESPECIALLY CONCERNED THAT HER EAR WAS BITTEN. Lyme can have horrible effects on the ear nerves and I would do everything to be sure:

* all tick parts have been removed - have a doctor look with magnification.

* even if the tick did not carry lyme / other infections the risk of disease is greater than the risk of preventative measures

----

This is not to immerse you in political turmoil, however, this is information you need in order to find a doctor who is knowledgeable.

www.ilads.org ILADS is site of the INTERNATIONAL LYME AND ASSOCIATED DISEASES SOCIETY

many articles and presentation are there.

--------------------

and this is to be considered:


http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284

Connecticut Attorney General's Office

Press Release

Attorney General's Investigation Reveals Flawed Lyme Disease Guideline Process, IDSA Agrees To Reassess Guidelines, Install Independent Arbiter

May 1, 2008

Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.


- cont'd at link.

-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.