New member here. My 7 yr old daughter has been diagnosed with lyme disease for 5 days now. We saw a pediatrician today at 11:00 and found that our 5 year old girl has two small bulls-eye marks on her legs. Not sure what to do now. The Dr. prescribed 2 weeks of Amox. 250mg 3x day for 5 yr. old and 375mg 3x day for 7 year old. Our Dr. however said "we don't have Lymes disease over here in G.P." We still insisted on the Antibiotics and got them. I really feel like I'm taking a crash course here.
Obviously I am searching hopelessly for a cure. I came across this site http://www.lymephotos.com/ is this just some bogus deal or is this maybe for real? Can someone let me know because all I hear is about people treating symptoms, but nothing about a cure. Please enlighten me. They just contracted this from a camping trip on 7/5/08. No symptoms except bulls-eye rash.
[ 16. July 2008, 09:04 PM: Message edited by: OregonDad ]
Posted by Lymetoo (Member # 743) on :
I wouldn't use it with a child and have never used it myself since I'm very sensitive to Vitamin C.
You can find out more about it here, by clicking on the little word "search" in the upper middle of this page.
We've had MANY discussions on the salt/C "treatment."
Just type in "salt and vitamin C."
PS...WELCOME! and please make sure your daughter receives amoxicillin ASAP if you want to keep her from becoming chronic.
The "cure" comes from aggressive EARLY treatment with an adequate amount of antibiotics. I hope she is receiving at least 3-4 wks of antibiotics for this??
Personally, I would want 6-8 wks worth if I had just been bitten.
Posted by Lymetoo (Member # 743) on :
up
Posted by Keebler (Member # 12673) on :
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OregonDad,
About that photo site, I'd skip it for these reasons:
- no clear identification of whose site, whose photos these are
- no clear citations or links to medical literature, etc., to accompany the photos
- no clear identification of exactly what the photos show
- no description of the magnification/lens used
- and the layout of the text is not very professional - the way it is formatted - and the background color - will prevent most people from reading it.
- the headline is sensational. Yes, everything about lyme is scary, but this is clearly an over-the-top emotional grab. Not a class act of a presentation.
All that said, Vitamin C "protocol" has been said by some to be of value. But there's way more to it, as well as many cautions - MANY cautions.
You would, hopefully, begin with a good doctor. While Oregon does not have any LLMDs, there are patients in the state who can guide you to the closest one or share their knowledge to help you as you move to the next step.
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- There is a great deal of good information - and some authentic knock-your-socks-off photos. But I gotta say, I'd wait for the photos.
www.ilads.org ILADS is the professional place to begin.
One group to contact might be the Oregon Lyme Disease Network.
Here's a link from here (LymeNet) with the Oregon support groups.
As I see you this is your second post, and I live in Oregon, too - I wondered about your first post and whether you have gotten the information you need.
I do see that you have been contacted by Meg. Good.
- I will leave some other suggestions at your first post:
I had some improvment with s/c , (did it for 2 mts then planed off ) but as stated, there are many people that have had problems with this .
With a child I whould not do s/c & because it is a new infection I whould get to a llmd QuicK .Please dont just see a pcp as they wont treat long enough.
Your best chance to nip this in the bud is early & proper treatment from a md that knows LYME (llmd) Doc (nickname )
Posted by robi (Member # 5547) on :
Please do as Keebler suggests. Contact your local support group and get your kiddo to an LLMD ASAP. Waiting is the wrong thing to do. You have one chance at early treatment. By early I mean the first few weeks. Waiting can have potentially devastating consequences. Please find an LLMD and let them know this is a very recent bite and they may try to get you in earlier.
Getting early treatment is the key here!
PLease do not wait and see. ANd definately don't wait for worthless testing to be done. See a knowledgeable LLMD that can diagnose by the bullseye.
Be sure to take a pic of the bullseye with a coin to show the size and be sure to have the date on the picure also.
hope this helps, robi
Posted by disturbedme (Member # 12346) on :
There is no easy and quick cure when it comes to lyme disease. So any site like this offering a "cure" is a scam.
Since it's a new infection, you have a good chance at treating early. Find an LLMD for her as soon as possible.
Posted by sutherngrl (Member # 16270) on :
Lyme Disease is a serious illness with serious consequences. Find a LLMD ASAP!
Posted by SForsgren (Member # 7686) on :
She should likely be on antibiotics. If done early, it can be a cure.
Salt/C is helpful for some. Not a scam. Not a cure.
Posted by Lymeblue (Member # 6897) on :
Please take your daughters to a LLMD pediatrician...ASAP I went through a similar situation with my 2 daughters 8 years a go....one was succesfuly treated the other unfortunately became chronic.... you need a Lyme Literate MD NOW!!
Posted by Keebler (Member # 12673) on :
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LLMD PEDIATRICIAN?
Can someone PM OregonDad the names of LLMD pediatricians, please? I know there are very few in the whole country.
I'll go over to his post in "seeking doctor" and post the same request.
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Posted by bettyg (Member # 6147) on :
welcome dad; so glad you found us for help and support!!
i'm one of many here with neuro lyme and can't read or comprehend what you typed; so breaking it all up so we can do so.
please hit the enter bar 3 times after EACH short paragraph; that will help us tremendously, and then we can HELP YOU!
quote:Originally posted by OregonDad:
New member here. My 7 yr old daughter has been diagnosed with lyme disease for 5 days now.
We saw a pediatrician today at 11:00 and found that our 5 year old girl has two small bulls-eye marks on her legs. Not sure what to do now.
The Dr. prescribed 2 weeks of Amox. *************************************
250mg 3x day for 5 yr. old and
375mg 3x day for 7 year old.
Our Dr. however said "we don't have Lymes disease over here in G.P."
We still insisted on the Antibiotics and got them. I really feel like I'm taking a crash course here.
is this just some bogus deal or is this maybe for real?
Can someone let me know because all I hear is about people treating symptoms, but nothing about a cure. Please enlighten me.
They just contracted this from a camping trip on 7/5/08. No symptoms except bulls-eye rash.
Posted by bettyg (Member # 6147) on :
i see MEG SENT YOU LLMD REFERRALS....GOOD!! Posted by hcconn22 (Member # 5263) on :
Of course there are ticks and Lyme Disease in Oregon. It has also been rapidly spreading all over. There just may not be as much as in other areas. Unfortunately most Dr's ignore Lyme Disease.
Your kids will most likely be safe with 30-90 days of amoxicilin, as long as you carefully monitor any symptoms.
If you cant get your Dr to prescribe it, the drug is not that expensive and can be purchased at many legitimate online pharmacies.
There is also a Lyme Literate Naturopath in Tigard, OR that works with a MD to prescribe abx.
Early treatment is the key. Also the salt and C is a bunch of fluff.
Posted by Keebler (Member # 12673) on :
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I sent the contact info. for the LLND in Tigard. She has precepted with two LLMDs (one from California and one from Colorado).
Naturopathic physicians in Oregon are licensed to prescribe many types of medicines, many types of antibiotics, too.
It's just all out of pocket unless a plan happens to cover ND or L.Ac. care.
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Posted by OregonDad (Member # 16332) on :
Thank you everyone for the help. I just learned today that my 5 yr. old daughter now has it.
I am very concerned that I might not be able to get a LLMD for my kids.
What is the deal? Do MD's not treat this? Or is this like a specialist MD?
I will travel wherever I need to go.
I don't know if I really want to know, but how bad is this?
By the way, my name is Greg and my girls are Eve(7) and Coreen(5).
My girls are on Amoxic. for two weeks. Does this give me time?
Thank you again for helping me.
Posted by Keebler (Member # 12673) on :
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Greg,
Oregon is one of the worst states to try to get treatment in.
Generally, it is not easy to find a doctor anywhere. Most do not take insurance and most insurance companies do not pay for long term treatment.
However, since your girls are getting prompt treatment, it should be short (one to a few months, maybe . . . but an expert should decide.)
I posted a couple articles explaining the politics at your thread in seeking a doctor but you many not have seen those there.
The Lyme Disease Solution (Paperback) by Kenneth B. Singleton (Author), James A. Duke (Foreword)
You can read more about it here and see 9 customer reviews.
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Posted by Keebler (Member # 12673) on :
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This is not about mosquitoes, but about the treatment situation - background.
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed here do to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
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:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .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.
. . . 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.
- FULL ARTICLE AT LINK ABOVE.
===================================
INTERNATIONAL LYME AND ASSOCIATED DISEASES SOCIETY
You can download the ILADS Treatment Guidelines here.
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Posted by Keebler (Member # 12673) on :
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I assure you that few, if any, Oregon doctors even know about the IDSA legal problems. Oregon infectious disease doctors go by the current IDSA guidelines. Oregon GPs do, too.
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.
I am also concerned for all the other children you said were on this camping trip.
If you talk to other parents and they mention bulls eyes, they should get their kids to a doctor ASAP and take photos, etc. too.
I would also want to inform the state park system or campground you were at. Some state agencies know way more about lyme than does the Oregon Medical Board.
Especially if others are getting bulls eye rashes at Diamond Lake, the vector control people should know and they might be able to kill off mosquitoes before others get infected.
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Posted by Hoosiers51 (Member # 15759) on :
If your girls do not come back positive for coinfections like babesia or bartonella or erlichia, please do not completely rule them out in your mind.
For example, there are I believe over 20 types of babesia out there, and the Ignenex tests only pick up 2. Trust your LLMD and go by symptoms.
You caught it early, so i think your girls will be just fine. But since you live in Oregon, any coinfection strains they could have may not be the more popular ones that would show up in bloodwork.
Babesia is a parasite, so you can't count on antibiotics killing it. I don't want to worry you, but it is good to be aware of these things, in case your daughters aren't improving as you would like to see or more symptoms show up down the road.
Just watch their symptoms closely, even when they seem better, to ensure you got rid of everything now! But if you are seeing a good LLMD, you won't need to worry about that.
Keep in mind other doctors may try to convince you that you have done more than enough to treat them after two weeks, but they are repeating what they learned somewhere else, not looking out for your children's best interests and covering all the bases.
Posted by lymemommy (Member # 12495) on :
As a mom, I would suggest trying to get your doc to write an rx for 6 wks of ABX. This will give you time to get in to see a LLMD, who can than assess whether or not your children need continued treatment.
As others have stated, it appears that you have caught things early, so there is hope that all will be well with both of your children very soon.
Try, as best you can, not to have a lapse in the medication (take for 2 weeks, then off until you see llmd). As this will allow the lyme to continue to deseminate, which means that your kids will get sicker.
I know, that's easy said, but try as best you can.
Chronic lyme is no picnic for kids, or for their families, so do what you can to protect them.
Best wishes, kp
Posted by Meg (Member # 22) on :
Glad you posted Dad!
Up for more input
Posted by OregonDad (Member # 16332) on :
I have contacted a LLMD in New Haven, CT. Sending him pics as we speek
so that he can consult and treat through our local Pediatrician. (if she will)
After reading all of your helpful posts, I just want to tell all of you that I thank God
for you all and you will be in our prayers. I will post our progress as it happens.
Thank you again.
Posted by bettyg (Member # 6147) on :
please PRINT this off.....
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!! ************************************************
50 mg/kg/day divided into q8h doses. ************************************
Posted by Keebler (Member # 12673) on :
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OregonDad - so glad to hear that you have contact with a LLMD now.
If you need materials about mosquitoes and lyme (Bb), see this thread - link below.
I ask for help and many replied and gathered some abstracts for you to print out for your doctor. It's probably just a start but since most of us are pretty tired around here, I hope it's all you need.
The LLMD might have more specific data on mosquito transmission but I hope you won't need it.
I hope your local doctor will work well with the LLMD.
Oh, and not to have you get into a fight, but the next time a doctor tells you we don't have lyme in Oregon, you know there are hundreds who do, but they have to get treated out of state or not at all - and everyone here hopes all the MDs will wake up some day very soon.
It's so good to see your willingness to go miles further for your precious daughters.
Topic: MOSQUITO transmission of Bb - need documents
posted 16 July, 2008
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[ 17. July 2008, 08:27 PM: Message edited by: Keebler ]
Posted by tickbattler (Member # 14873) on :
Oregon Dad,
If you contacted Dr. J in new Haven, CT, you are in good hands. My twin 4 year old boys go to him. If you treat it aggressively now, you should be fine.
One of my sons only got 3 weeks from our local pediatrician after a tick bite and then it came back a year later.
If I were you, I would give them at least 6 weeks abx.
If they have symptoms, I would treat for 2 months beyond the date the symptoms disappear.
Best,
tickbattler
Posted by OregonDad (Member # 16332) on :
bettyG
cant private message you for some reason....
From what the document states, we are over medicating our girls.
We will not be able to see a LLMD until Sept. 2nd. So I am unsure if I should decrease.
Anybody else think our prescription of Amox. is too extreme,
250 mg 3x daily (5 yr old)
375 mg 3x daily (7 yr old)
Let me know please.
Posted by Keebler (Member # 12673) on :
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Can you call the LL ND that you have an appointment with next week ? She is an ILADS member, by the way (Although their office may be closed on Fridays).
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Posted by nancyb (Member # 10154) on :
In my experience, the dosage your two girls are on is not too much.
Both my daughters have been on amoxi. When daughter #1 was 10 (90 pounds) she was on 4000mg/day. When daughter #2 was 8 (70 pounds) she went up to 2500mg/day but it was too much for her and we had to cut back to 1500mg/day.
You will know if the rx is too much for them.
PM me and I'd be happy to help you through this. Posted by njlymemom (Member # 15088) on :
Hi - first off - you have received alot of great info here - aren't these people wonderful!
I am unable to read it all, but it looks as though you will be seeing the best in about 6 weeks.
Your question about the amox is understandable. We have found that the only way to make sure that the amount our children were taking was to have an amox level done. Our doc has a range he has seen that works, and it is working for us. It is a simple blood test. So it might seem like a tremendous amount of abx, but it might be what is needed. I have 3 w/ lyme (and myself), all 3 children have been different with the levels and what their body needed.
I wish your girls the best. I know it doesn't seem like you are lucky, but you are one of the lucky ones. Very few get the rash or see the tick. Many children go years with wrong dx, and become critically ill. You have caught this early, stick with getting them to the LLMD and they willl beat this.
![[Smile]](smile.gif)
and please make sure your daughter receives amoxicillin ASAP if you want to keep her from becoming chronic.![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)