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» LymeNet Flash » Questions and Discussion » General Support » So do I just sit here waiting? this is my daughter!!!!

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Author Topic: So do I just sit here waiting? this is my daughter!!!!
marysmommy
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okay so I got "the list" from several users and called several of them- one isn't taking new patients, one has a wait list til April and requires a credit card number to book an appointment (given he's in his early 80's I can only hope he'll still actually be alive when our number comes up) Meanwhile my child suffers. I feel so frustrated right now. She needs to be seen TODAY not in 4 months.
Yes I am on the wait/cancellation lists yada yada...but seriously? My daughter can't even attend school right now. How am I supposed to push on with that? I am depressed, angry upset and I just want to cry.

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Lymetoo
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I don't blame you for being upset!!! The position the IDSA has put us in is criminal at best.

The one in April is your best bet. I'll send you more names. (I hope)

Can you convince your daughter's Pedi to do anything??

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--Lymetutu--
Opinions, not medical advice!

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poppy
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Any chance of a friendly GP putting her back on antibiotics until she can be seen? Has she been rebitten recently and could go to urgent care for meds? The official line is that people who have been treated already and have symptoms afterwards have probably been bitten again unknowingly. So, this will sound plausible to non-lyme docs.

Or you might continue to look for lyme docs that can see her sooner. Not many docs take kids, though. And the reason for the long waits is because there just aren't enough lyme docs.

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kgg
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I hear your frustration. Hopefully, you have received more names from Lymetoo. You may be surprised how quickly a cancellation will come up. In the meantime, I would be calling other docs and travel if you have to, to have her seen.

Hang in there Mom,
Karen

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dbpei
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PM sent.
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glm1111
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What about an LLND? (Naturopathic Doctor)Any in your area? Sorry I don't have a name.

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PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

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lpkayak
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pm sent

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Lyme? Its complicated. Educate yourself.

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Keebler
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-
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=117755;p=0

Topic: RIFE Machine - Reference LINKS

LL Naturopathic links here, too.
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marysmommy
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SO after my whining yesterday on this post guess who calls me this morning with a cancellation for THURSDAY???? Yep. We are going to New Haven on THURSDAY. Had to scramble around for $975.00 especially this time of year.
I also took her BACK to her pediatrician (whom I really do love but he's not gonna hear the chronic lyme theory) who agreed- she's a sophomore in high school, for every day out of school her chances of getting into a top medical school spiral downward. We need to fix her NOW. He actually sounded as frustrated by her symptoms as I did, we have a neurology appointment next week- I will keep it. Yea I will play both sides of the fence. He just isn't going to hear anything that the CDC doesn't apprive LOL. So I am filling out papaerwork to fax back to the guru for Thursday. I will tell him we got in the same week I called it must be fate- so fix my baby girl and someday she will be running her own LL practice....

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Keebler
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I'm so glad you are getting at appointment sooner.

I have to disagree, though, at the pediatrician's decree: "every day out of school her chances of getting into a top medical school spiral downward." (end quote).


That's a huge pressure for any young person to take on. Huge. I would just crumble every which way under that assumption or time line.

She is just a sophomore in high school. There are still 6.5 years until she'd even enter medical school. But, even if she has to take out more time: what will be, will be. I doubt it will be held against her.

It's vital - absolutely vital - to not put any time line on when she can return to school. She may be able to fulfill her credits in other ways this year. But, even if not, her body needs to tell her how to proceed at what speed.

I say this, not out of criticism but just to let you know that this can be a long haul. What matters most now is the content of her character and the love of her family.

There have been other medical students and doctors who have been out of school for long stretches due to health matters, or travel, etc.

What matters most is the timeline that her body requires. And that's not always easy to plan.

Best of luck to you both. Take care.
-

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beaches
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Keebler is 100% right. I am a mother of sick kids. My oldest graduated HS late and her dream of entering the medical field eventually faded as she has opted to pursue another field.

The LAST thing you should do is have grand expectations of your daughter getting into a good medical school. She does not need that kind of pressure especially since she is sick. And, she could very well change her mind. Afterall, she is only a sophomore in HS.

It sometimes takes a very long time for a child to recover from tick-borne diseases. For the time-being, please focus on her health. Colleges will be around forever, and certainly no college will hold her illness against her.

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joysie
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Medical school? You are kidding, right? I wish you all luck fixing her now, but as a mother whose 15 year old daughter was also ill with Lyme, I would counsel patience and support for your daughter .

(Also appreciation of the 80 year old doctor).

My daughter is 20 now and I am grateful she has her health.

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beaches
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And from my experience, playing both sides of the fence just doesn't work very well. If anything, you'd be better off taking her to an LLND for advice on supplements and herbals, as well as Dr. J. And yes, likely that will be out of pocket as well. Hopefully, you will get back a good amount from your insurance co.

As for the money, it's very expensive for sure. That is the direct fault of IDSA. You have to get to a point of acceptance that it might very well take thousands, even tens of thousands, to get your daughter well. It being this time of year is pretty irrelevant in light of a child's illness. Cut back on gift-giving and anything else you have to.

As for your pediatrician, I personally would run from him as fast as I could. IMO, a child's pediatrician should at the very least be open to Chronic Lyme! Our pediatrician is open-minded. She might not agree with everything ILADS, but neither does she agree with everything IDSA.

You could find yourself in a situation where your peds is the primary person dealing with your school system. If he does not "believe" (Good God, Lyme Disease is NOT a religion! It's a disease!!) in Chronic Lyme, you could find yourself in a really bad situation with your school system.

So what's HIS explanation/dx of her illness? Hmmm--CFS, Fibro, depression for starters I bet. I'd bet a dollar that him being in CT, he knows full well about Chronic Lyme and chooses not to go near it with a 10 foot pole.

The odds of her getting "fixed now" aren't great, I am sorry to tell you. Treatment takes time and is very involved. ::sigh:: I know that's not what you want to hear.

There is only one LL neuro in CT that I am aware of. I hope you are seeing him.

I wish you the best. I hope your daughter is healed sooner than later. And I sure hope she one day becomes a LL doc.

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Lymetoo
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You and your daughter are so lucky to get that cancellation!!

Yes, it will take TIME .. so take a deep breath. Unless she was bitten yesterday, this will take awhile.

Give her room to heal.

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

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lpkayak
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congrats and good luck. take care of her now...but ditto what others are saying about the future.

i used to fantacize (but never said it outloud) that my kids would find a cure for lyme...

they have been in college where some top llmds work, research, publish but after their experiece with lyme and tx it is hard...the tx after that they continued in science fields but totally refused to work or study or thingk about lyme

so love her...support her...tx her...but you guys have a journey ahead of yourselves. there are a lot of us here when things get ruff. dont forget to come back

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Lyme? Its complicated. Educate yourself.

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marysmommy
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I see. Here We go. Let me make my position clear. I am a nurse. A damn good one at that. I do not work in acute care. I choose to work in areas where I can actually have relationships with my patients. I have been in home care for most of my career. i currently am the assistant director of wellness in an assisted living community- a non profit small one that is homelike- the residents consider me their nurse their daughter their friend and I cherish the relationships I have with them. My daughter with LD is my eldest of four. Two of her sibs have aspergers. All 4 of my children have genius IQ's. Their dad has aspergers and a genius IQ. I am raising children that are smarter than me. This is not easy.Mary attends a special magnet school who's theme is medical professions and teaching careers. She is enrolled in a special curriculum and currently we have a 504 in place that is helping her maintain her straight A average. She dropped her pre calc course because she already is a year ahead in math credits so that was an easy fix. She pared down so she has no electives, just core courses. She is maintaining an A average right now despite all this. She is going on home tutoring. I have suggested to her she take a break from school, she has declared she will not. She is well supported by her school and the district that controls the special ed resources. I clean her room I bring her dinner in bed i expect nothing from her and i make the other kids be kind to their big sister. She has chosen her path in life not me. I fret my child places high expectations on herself and i attempt to slow her down and she pushes on. She is her own person and wherever life takes her she will no doubt succeed. This is why I am here.

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lpkayak
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i wish you all the best. im just sayin this is a ruff road to travel. i guess some get thru it easily. one of my sons was very physical. went down on the couch when infected. got 3 weeks tx. got better. and this happened 7 times in his teenage years...but he got tx and responded...and that has been rare in my experience.

it often makes you feel like alice-in-wonderland. everything you have learned in life is wrong. its crazy and can suck you dry

many who deal with Bb are strong, smart, athletic go getters...but this can bring you to your knees.

i applaud what you are doing...i also am educated, a professional, have a much lower IQ than my kids, who are dyslexic but going to or graduated from top, top universites .

my mantra in life had been "nothing's impossible" taught to me by my dad who belived the same.

but i tell you...4 kids, one dil, one grandchild who do not deny infection and many family members and friends who do deny infection later...

this is a condition that can change your view of the world and humble you beyond your imagination

you are doing an incredible thing and i wish you continued strength and understanding of the complexities of lyme

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Lyme? Its complicated. Educate yourself.

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Lymetoo
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Your child sounds wonderful, mary!

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

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poppy
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Well, I say keep trying to do what you want to do until you are forced to scale back. All of us want to do what we used to be able to do. When/if we find this isn't possible anymore, then we make concessions to illness and find a new normal.

I used to be a very athletic outdoorsy type person. Recently I volunteered at a tree planting event, only lasted a few hours. Just little trees, stick in the ground, and put soil around roots. I fell down twice and the next day could barely walk. So, despite my determination, I have learned that some things are not possible anymore.

But the person concerned is the only one that should make this decision, and hope it is not permanent. Rethink at intervals. Some people are hardheaded and driven and need a lot of evidence to know they are trying to do too much. Bystanders can only support them in their decisions, unless they do life threatening things.

Best of luck to your daughter and hoping she will find the correct course to maintain some sort of forward motion while being treated.

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blinkie
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I want to say that our best laid plans are not in our control. Our paths have been set for us since before we were born. Do the best you can to get your daughter well, but try not to control the uncontrollable. His plan for her may not be the same plan "she" has for herself...

"For I know the plans I have for you..."

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blinkie
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btw-I have a sick 4 year old son. I have no idea what the future holds for him. But, I know it's not up to me. I will continue to do what I need to do to get him well, but I have no control over the plan for his life.

I have had to change my plans after 5 years of lyme treatment. But, I'm 90% well and I can still have a quality life with a new path and it's really for the best. The path I was on was the wrong one.

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beaches
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So, how did the appointment go?
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poppy
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Plans laid before we are born???? I think this is baloney. Sorry. No one planned for us to be tickbitten or sick for a long time or unable to get adequate treatment, or financially ruined. If such a life WAS planned, then the devil did it.
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Dekrator48
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Praying for your daughter and your family!!

So glad you got that cancellation appt.

Keep us updated!

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The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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Garden
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I'm glad you got the appt. We cancelled for next week (2 back-to-back follow ups, which is enough time for a new patient appt), so I hope that really helps someone.

I'm sure Dr J told you that recovery typically takes 1-3 years. We are 7 months in to treatment and have seen only slight improvement. Honestly, I think we need to work with someone to add herbs as well.

Please keep us updated. I feel like there are a limited number of people on this board treating kids, and I would love for them to post more often. It's a different experience than with an adult, and it's hard as a parent!!

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Garden

"Fibromylagia" for 8+ years
Pos IgeneX WB per both Igenex and CDC
Pos Neuroscience MyLymeImmuneID
Started tx for Lyme in March 2011

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marysmommy
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The appointment went wonderfully. Mary loved him. He was great. No reason to doubt his science. I said to him "if it quacks like a duck, looks like a duck and lays duck eggs, why does the CDC not think its a duck???" He laughed.
Politics. I took the scripts for the antibiotics and filled them. I started my child on a regime of three antibiotics tonite. She felt like finally- an answer. I remarked to her the proximity of the office we were in to another great doctor - the surgeon who resected her sister's bowel and fixed her horrible rectal prolapse over at Yale. I guess New Haven is my Lourdes.

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marysmommy
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Sorry just responding to some of the posts- actually Mary's onset of symptoms is only since summer. He feels i got on top of this uickly and she should respond fairly quickly- although he was quick to caution I should not have any timeline in my head, we go by symptoms. He remarked he treats kids who have had symptoms for years and therefore they take much longer to cure. His parting words "she's fixable..."

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Lymetoo
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That is AWESOME!! Isn't he just great!

Garden.. Many mothers are afraid to post too much because of the Munchausen's problem. Several on this board over the years have had CPS after them too. It's just criminal.

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

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marysmommy
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and joysie exactly why do you think my daughter won't be attending medical school? she actually will be eligible to sit for the exams to complete her IGCSE this spring. Google IGSCE.
She has a lot of supports in place to keep pushing forward. I grew up the daughter of a woman who was paralyzed from age 3 by polio. Being in a wheelchair and having a drunk husband didn't stop my mom from going back to college when i was 11 and graduating valedictorian, she then worked as an accountant and supported us- drove a car, bought a house, and raised us- all from a wheelchair. So yeah what doesn't kill us only makes us stronger. She is her grandmother's granddaughter. We have another 504 tomorrow morning. Her school counselor called me at 9pm to go over the accomodations we wanted. Yeah- my daughter has got her back covered indeed. She will be fine- no - she'll be better than fine. "she's fixable" ( although he did caveat that with she'll still be a teenager...even he can't fix THAT)

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lpkayak
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yes...if you meet him you love him.. an angel. he counseled me about my daughter and treated my grandson for about 3 yrs. my grandson is in 3rd yr of college doing enginerring. still has some joint pains...but way better than when he started

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Lyme? Its complicated. Educate yourself.

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Garden
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Great news! Good luck to you!

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Garden

"Fibromylagia" for 8+ years
Pos IgeneX WB per both Igenex and CDC
Pos Neuroscience MyLymeImmuneID
Started tx for Lyme in March 2011

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Keebler
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mary's mommy,

Many here cannot read large (or even medium) blocks of solid text. Most need "breathing room for the eyes" so to speak.

Please break up paragraphs into no more than about 3-4 finished lines. Just use the space bar to create a space break.

For "breathing room" for the brain, we can comprehend better (and better refer back to your questions or points as we formulate a reply) when each new thought, question or topic has a new paragraph, too.

For some, nystagus (spasming of the eyes) creates a sea of swirling grey with packed text. Others have various kinds of visual or neurological issue that make it hard to sort out packed typing.

This way, more can read and more can reply. Thanks for understand this.
-

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beaches
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Marysmommy,

In defense of Joysie, I have to say that your original post states that your daughter can't attend school. You said you are depressed, angry and upset.

So many of us have been there, and quite a few years back, to boot. So many can relate to your feelings and many here know what it is like to have children so sick they are unable to attend school at all, sometimes for years.

You go on to say that you got a cancellation (which I have to tell you is almost unheard of in Lymeworld), so without a doubt everyone was relieved/happy to hear that!

You mentioned the $$$. Yeah, we can all relate. I have to tell you it was almost a diss to the doc when you mentioned his age and you can only hope he'll still actually be alive when your number comes up. I know no one lives forever. But it hit me a bit hard when you stated that. Dr. J. has had numerous docs do preceptorships in his office. There are those following in his footsteps. But I could be overly sensitive.

Everyone should have other docs. In my opinion, we need a few with different perspectives/specialties to get better. And that doesn't come cheap, unfortunately.

And you also mention your pro-IDSA peds whom you love. That itself made me shudder.

You later said that your daughter attends a special magnet school, she has a 504 in place, is a year ahead in math. That is really awesome. I trust you realize that the purpose of a 504 is not to help maintain an "A" average.

So I think I am confused. Is your DD able to attend school or not? The impression I had from your first posting was the she was unable to, like so many of our kids.

Then I got the impression she was in school, and kudos to her if she is.

I think a lot of us viscerally reacted to your original post regarding your daughter's illness, having been there, done that. And so I myself, and apparently others here, found it a bit shocking that you were concurrently mentioning "top medical schools."

I totally understand having a strong-willed young woman as a daughter. I deal with that every day. As mothers, we make suggestions and give advice. At the end of the day, a strong-willed child opts to go her own way, which I completely applaud and understand.

However, I do think when presented with such a child/young woman, we as their mothers need to remind them that the timeline for their accomplishments is not set in stone and allowances/additional time needs to be accounted for as they pursue their dreams.

As far as your own career, I don't doubt you are a good nurse. I don't doubt that your kids have genius IQs. In the awful reality that is Lyme Disease and its associated coinfections, those things are not at all material.

I got straight A's throughout HS and college and got the highest-paying job of my graduating class. Am I a genius? I don't think so, but I don't really know, nor do I care. Because it doesn't mean a damn thing with these DDs. All I know is I've spent years researching Lyme Disease and associated coinfections in a quest to get my kids back to wellness.

It's a good thing that your daughter will be getting home instruction. This could be very helpful, considering she just started treatment.

She can't really "take a break" from school unless she is of "compulsory age" in your state. If she were to "take a break" from school and not be of the "compulsory age" of your state, you are at risk of being reported to CPS/DFS by your school system for educational neglect. Please do not underestimate the possibility of this happening to you.

I cried when I read that you bring her dinner to her in bed. Those times for me were the worst. To have to bring meals to a child laying in bed who previously had an active life is just devastating to a mother.

I wish you and your daughter all the best. I hope and pray she is able to pursue her dreams.

I hope I haven't offended you by my post. There are a lot of parents here who've been through the mill. Welcome to the trenches.

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lpkayak
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" I have to tell you it was almost a diss to the doc when you mentioned his age and you can only hope he'll still actually be alive when your number comes up. I know no one lives forever. But it hit me a bit hard when you stated that. Dr. J. has had numerous docs do preceptorships in his office. There are those following in his footsteps. But I could be overly sensitive.

i dont think you are overly sensitive...i felt it too.

for me-when in the docs presence -maybe 5-7 times inmy life...i felt like - honest , he was a saint. a very, very special person. jokinly i call him an angel...but really there is something very special about that man.

i talked to him about a number of different issues and people. i am greatful to have met him and interacted.

but marys mommy is new at this...so much to learn...so much to experience. i'm sure in the future she will know what we are talking about

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Lyme? Its complicated. Educate yourself.

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beaches
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Yes, kayak, I know exactly what you mean.

He is truly a saint. He is fully dedicated to children afflicted with these damn diseases, and he remembers every single one of them.

Dr. J. is a man of great integrity. I consider the fact that my children have been and remain patients of his to be an extraordinary blessing.

To be his age and still be more than willing and able to stand up and fight for sick children, at his own personal expense, is remarkable. The fact that he remembers certain details about his numerous patients is very special, indeed.

I consider it an honor to have met him in the first place. He went to theology school with MLK Jr. and they were friends. Dr. J. marched alongside MLK during the protests of the 60s. Dr. J. has a plaque of MLK's hanging close to his desk.

So, IMO, if you are fortunate enough to have your child/children evaluated by the best pediatric LL doc in the country, if not the world, please do not diss him, his age, his wait time for new patients, the cost to see him (the majority of LLMDS cost the same or more and BTW--the difference is that Dr. J. is being held hostage by the CT court system and he has incurred obscene legal fees for doing the right thing by sick children).

Dr. J. lives a very modest lifestyle. You'd think someone of his stature in our community would be sitting pretty. No, not at all. He is on the other side of the tracks from Yale/New Haven, literally and figuratively.

His office is very modest, and I am sure his apartment in that building is modest as well.
And his staff is wonderful and very dedicated to Dr. J. and his young patients.

The hairs on my neck go up when someone even remotely criticizes this man in any way.

Yes, mary's mommy is new to this and has so much to learn. I kinda hope she doesn't have to know what we're talking about. Maybe she'll be able to avoid the hell of it all.

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Tincup
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Dr. J is an international treasure- a courageous, selfless, inspirational, and outstandingly gifted clinician who has helped thousands of the most severely ill children with Lyme and tick borne diseases regain their health and their lives.

Dr. J is what we all wish for in a doctor and in a human being.

Please find it in your heart to remember Dr. J and his wonderful staff this holiday season!

[Big Grin]

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

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beaches
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Ditto to that, Tincup.

Over the years, we've sent small gift baskets via Amazon to Dr. J. and the staff.

We've also arrived with a bunch of burgers from Louis' Lunch.

There's also some good pizza joints in New Haven that have had a long-standing rivalry...Frank Pepe being one of them. I don't remember the names of the other joints.

Like Tincup said, please remember Dr. J. and his staff during this holiday season in any way you can.

Some ideas: Bring a $10 bouquet of flowers from a supermarket. Order a pie from a local pizzeria. Order and bring in burgers from Louis', send them a gift basket via amazon.

I have to say that the staff REALLY appreciates it when you bring them burgers or pizza. And they are very, very deserving of a good burger and/or a good slice.

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lpkayak
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does he still need money for the legal fund? doesnt sound christmasy but might be a help

oh tin...your words made me tear up...not sure why. just looking at or thinking about the man gets me real emotional...seeing him with a child...i have so many pics in my memory...

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Lyme? Its complicated. Educate yourself.

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beaches
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That's a good question. I really don't know to be honest. Maybe someone else does?
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lpkayak
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we probably should start anouther thread about it-or ask office

--------------------
Lyme? Its complicated. Educate yourself.

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t9im
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Hi everyone:

Regarding Dr. J. I know he is still required to pay for the peer review. Last I read this was 4 to 5 k a month.

His appeal to the CT Supreme Court has still not been decided as I've checked the website all year.

My last contribution was in the spring and Elliot still sent the thank you as they continue the good fight.

**edited name of LLMD**

[ 12-12-2012, 09:39 PM: Message edited by: Lymetoo ]

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Tim

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lax mom
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I googled IGSCE. What was the point of googling that?

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beaches
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lax mom, I didn't google it-didn't see the point in doing so.

Mary's mom apparently has a very smart kid who is very sick.

Mary's mom hasn't come back to this thread to give any further updates since their good visit with Dr. J. All we can hope is that they're doing OK.

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beaches
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Mary's mom, you said "I guess New Haven is my Lourdes"

That really depends on the part of New Haven you're referring to.

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lax mom
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Mary's mom:

Speaking as the mother of a 3 yr old with Lyme, who could never make an appt with Dr J happen in a million years...

...you are beyond blessed to see ANY LLMD in one week. The fact that your child saw Dr J is an absolute miracle that many on this site would give their left arm to make happen.

Your journey is just beginning with dx and starting tx. Lyme treatment is a crazy roller coaster ride,that many days, you will wish you could get off of...but can't.

I see from your posts that you and your daughter strongly identify yourselves in terms of your achievements and accomplishments. I used to do that as well. That's fine when your healthy and your body is strong.

However, when Lyme took away my ability to work and achieve success, I was left with a huge hole in my life.

I had to go through a grieving process. It took a long time to realize that my worth is intrinsic. It is not based on my career and academic achievements. Those things are a mirage that give you a false sense of worth.

Many of us have lost our ability to even think or physically hold our head up most days...

...I have found that top grades,top schools, academic/vocational accomplishments, achievements, vocational success are ABSOLUTELY MEANINGLESS when you and/or your family members are fighting for their life.

That is the reason that none of us are impressed if someone does the IGSCE, or attends Harvard or wins a Nobel Peace prize.

In my case, my husband, myself and my 3 yr old all have Lyme.

My little son has a genius IQ...who cares? I don't. If he had his way, he would work on his ABC's all day. I won't allow it, because he needs to play.

What's it matter if he's a genius if he can't socialize with others and play?

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beaches
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Very well-said lax mom.
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lax mom
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marysmom: I see that the rest of your family is dealing with Aspergers.

Drs thought my 3 yr old had autism. However, it turns out it was Lyme-Induced Autism. It went away with Lyme treatment. He is now only on a few supplements with a DAN!/ARI Dr.

Many people with Autism, Asperger's, etc are dealing with toxicity. Their bodies cannot genetically detox.

Check out:

http://www.lymebook.com/lyme-autism-connection

http://www.autism.com/

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Rbm
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At our last visit with Dr. J, he told me our two kids would be ok. That my son was so smart, but had difficulty holding it together, but also that he would be ok. He said my kids looked better, it has been about 7 months. He said they were more "sparkly". I cried when I came home. It's true, they are happier and ARE more sparkly. I can't tell you how much this man means to his patients. He is a saint- a truly selfless, amazingly brilliant human being. And he adores children and goes above and beyond to help them. We are blessed to have him.
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Lymetoo
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That's wonderful, Rbm!! [Smile]

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

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