sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
My son's pediatrician called a little while ago. I have absolutely loved him, my son adores him, he is completely accessible, he is actually ranked as one of the best in the country.
Until Lyme.
He called to say that he's been lookinginto Lyme by speaking with the very best experts in the world - the ID crowd at hopkins
and reports that:
1- my son almost certainly does not have Lyme,
2- dr. J. is not only in "the middle of all That Controversy," but that he is RESPONSIBLE for a good bit of the controversy !!
3- that he is in no way qualified to even discuss Lyme, but even if he does not treat for Lyme (he said he would absolutely NOT give him abx) and dr j. treats my son, he isn't sure he's willing to be my son's pediatrician at all!
4. the only way he'd consider continuing is if i send my son to a specific Hopkins ID pediatrian who he has already spoken to, and then i report back to him.
am i really supposed to think that doc is going to say my son has Lyme???? of course he won't, especially since my guy will have already been on abx for over 30 days.
what the blank am i supposed to do??? how am i supposed to provide my son basic medical care when no ped will touch him and the Lyme docs in town don't treat routine ped stuff????
i am so angry and so worried i can't think straight. it is bad enough my son has Lyme. his herxing is beyond belief often enough. now i have to fight to have someone see him for a dammed COLD????
seeing red and then some- dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Dilly,
I am speechless and so sorry. To hear of doctors who abdicate their basic responsibility is so awful. I am not sure what to say right now except sorry for your pediatrician's narrow and closed-mindedness.
These lyme "wars", which are affecting you so directly right now, are the fault of the IDSA doctors who ignore peer-reviewed science and clinical evidence to come up with insurance industry-driven guidelines. They have harmed so many people's lives, I am amazed they can sleep at night!
Doesn't sound like you will be able to reach your old ped. As difficult as it is, probably time to get a new pediatrician.
posted
I by-passed my daughter's pediatrician all together when I took her to an LLMD.
When I did take her to pediarician I knew just what to expect-the same response as you.
But it was still difficult to hear this doctor that I really liked-(on Greenspring-by the way-bet it's the same group) denounce any findings by a doctor she considered not a "mainstream doctor"
Then she tested my daughter for everything up and including the WAZOOOH-to try and explain her symptoms.
Alas-the bottom line , since all the tests she ran were "normal", I should take her to a shrink.
That's been her only answer since my daughter was in kindergarten and she can't diagnose her.
ANYTHING but LYME DISEASE.
Igenex testing showed my daughter had long term exposure to lyme-LLMD even wondered if she had been infected in utero-which was entirely possible.
savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
Is there any way he can contact your llmd and discuss treatment?
I really can't stand the IDSA!!!! I am so sorry you are going through this.
Maybe other moms on the board who live in your area can suggest a new ped.
Posts: 1603 | From ny | Registered: Aug 2006
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Someone was collecting info on Dr refusals, etc. I hope you can send this on to them.
Maybe you can find a family Dr somewhere and not disclose all of the lyme info. Perhaps not 100% what should be done but maybe will get you thru until you figure this out and find a better answer. lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
In the same boat here with my children with Lyme! Got pretty much the same conversation with the local ped.
I was dropped by my PCP after mentioning Lyme, so I know it isn't an idle threat.
So, do we keep silent about the Lyme treatment and then take our children to the local ped. office for routine things??? That could be so dangerous. What on earth are we supposed to do????
The ID drs. are really going to great lengths to silence, cut off and keep our children from getting the help they need. Dr. J has helped thousands of children when no one else could or would. His method restored their health.
The other fear which is based in fact is some mothers are accused of Muchausen's and their children are taken from them if they get them treated for Lyme. It doesn't matter if you have scientific tests proving they have high Lyme titers, either.
I hope someone has answers.
From another hurting mom, Kayda
Posts: 582 | From midwest | Registered: Nov 2006
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YOu hit the nail on the head when you said the pediatricians declare no Lyme, test 1,000 other things which all turn out normal and then recommend a psych eval. This is SO wrong. I think we need to get a new name for Lyme. Lyme is a hot button. Let's rename it to some other disease that needs abx treatment and bypass this whole scary situation.
Kayda
Posts: 582 | From midwest | Registered: Nov 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
O-M-G !!!!
confounded, dangblasted PEDUCK!!!!!
SO So Sorry, Dilly!
(((((((hug))))))))
Any chance you can get Stricker to go with you? What about bringing volumes of scientific reports & documentation. What about asking Dr.J for advice on how to handle?
Oh this is not good, not good AT ALL! I'm thinking it looks like new Peduck time. Unfortunately they all rely on the "Red Book" which spews "IDSA" crap on Lyme as doctrine.
My DDs ped faxed me the pages when I challenged her about it in spite of the CDC negative test with bands 41 & 23 positive.
OOOHhh!! Maybe Dr.J might have had other patients in your area who would be willing to refer a compassionate Ped?
Maybe post here an appeal to other Dr.J's patients' parents in your area for Ped info?
Oh Dilly, I'm so sorry for you! (((((((((more hugs)))))))))
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I am so sorry dilly.
Are there any support groups in your area? Maybe someone else has a ped that is more open to ideas.
bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I am so sorry to hear about what you are going through.
Having had lyme most of my life, I have heard forever from MD's that "nothing is wrong with you."
What I ended up doing is losing faith in the medical system, and choosing to go to naturopaths.
I actually had the courage to go back to the medical system, our local ID specialist, after my ND diagnosed my lyme.
Of course you know where that got me - $500. poorer out of pocket, with a referral to the rheumatologist.
My suggestion is that you find a good naturopathic physician for the time being, in addition to your LLMD.
Many or most naturopaths are aware of lyme and understand something about it.
In addition, you may get some good help with boosting your son's immune system.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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tailz
Unregistered
posted
I really see no reason why your pediatrician has to know about your LLMD. Just make sure that if your pediatrician prescribes any medications for your child, your LLMD is contacted for an okay first, before he takes any. I do not trust mainstream docs at all.
Can't your LLMD take over altogether? I no longer have a family doctor for myself as my only real health problem IS Lyme.
If all else fails, I've heard that you don't need a prescription to get meds for your dog, so just go get Fido some doxy or amoxi wherever antibiotics are sold for farmers and so forth.
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posted
So sorry you have to deal with this illness and the doctor problems. It makes everything so much harder.
My kid is an adult now, but was ignored and told she had depression for years before she was diagnosed. I resisted taking her to a psychiatrist, until I was forced to get her evaluated for the doctor to continue seeing her. The child psychiatrist we saw said that she wasn't depressed but had "anxiety over her pain." I thought we finally had confirmation and we could finally find out what was wrong with her. It didn't work that way.
She is being dropped by a doctor now who doesn't know what to do about the lyme issue, so I know how infurating it is. We did eventually need to get her treated by a psychiatrist because she began having so many neuro and psych problems from treatment and some of the meds she was on. She has seen him for 3 years now and he is the best doctor we have seen and has been the most helpful. She also has started seeing a therapist--because the doctor who is dropping her forced her to--and I have to say that he has been a blessing and we will continue treatment with him also.
I know it sounds counter productive to have to see another doctor or do therapy, but I wish we had done it sooner. The doctor and therapist she sees are her best advocates to other doctors and have been so supportive. You probably don't need both, but from my experience over years of dealing with doctors--add a psychiatrist or therapist. They will protect you also from doctor's impressions. They can also make recommendations about other doctors that might treat your child. In fact, the psychiatrist asked patients, drug reps, and other doctors about doctors that had gentle manners and then presented us with a list! He did this special for my daughter.
Good luck. It is discouraging, but if a doctor doesn't want to treat your child, you are way better off to cut your losses now.
Posts: 177 | From God's Grace | Registered: Apr 2007
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
This is unforgiveable!!!!!
Since you mention Hopkins why not send an email to
I mention that because on the two segments the local channel 7 ABC news has done......well, on each a different Hopkins physician has been interviewed espousing the IDSA view.
I would like to see a segment done dealing with the neglect by our pediatricians. I found myself in your situation years ago.
And the medical community wonders why we are angry!
And what about the Hopkins pediatricians who recommended the lyme vaccine to those young people who ended up having the genetic predisposition to Bb?????
Many of those young people now have lyme.
How can our medical community do this to you/us!!!!!
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
I'm sorry that i can't keep your replies straight in my mind.
i hugely appreciate the support, but though i've read through all of them twice, hoping for something to sink in and click, i'm not sure i see what to grab onto, what my best choice is right now.
lmt et al- yes, i'll definitely tell anyone in the Lyme community who will listen about what this doctor is doing. He wasn't stupid enough, though, to say he would NOT tx my son no matter what.
I asked him directly, pretty much with these words-
if dr. j treats my son for Lyme- i am NOT asking you to do that- are you going to support us by continuing to be his ped for unrelated, routine things? His answer WAS a direct "I don't know."
He said he saw potential problems with the situation- specifically, that my son is in treatment for a disease he doesn't think my son has (not that he KNOWS anything about Lyme, as he was at pains to point out, repeatedly..) And hat even he concurred with the Lyme dx, which he does not, he would not treat with abx.
His CYA route is clearly to have me meet with HIS ID pediatrician buddy who will tell me that my son does not have Lyme, and in turn my ped will say, wellm that's the expert talking, not me, you are choosing not to accept his world class advise, so i am not comfortable continuing with you. and without a doubt, MY refusal to see reason will go into my son's medical record, tainting it for whatever DR i can find next.
i see with wide open eyes where he's trying to get me to go, i just don't know what to do to get out of the trap.
there is no such thing as a family doctor here..my 1st PCP is the one who made sure that not only i would have still have Lyme, but that the baby inside me would too. My next PCP was so scared of Lyme she was searching her references for ANYTHING else that would fit, but had to settle for i know its not Lyme, but i don't know what it is.
i'm babbling,i know, i can't think straight. it was maddening but so different when the drs were just screwing with me. now we are talking about my precious little boy, and i just can't comprehend that a child's dr would refuse to do what he is obligated to do, and i really don't know what my alternatives are.
i don't see how it could possibly work to have him see DR's who are unaware of his basic health and of the meds he is already on. what am i supposed to do if he gets an ear infection, say, and the dr wants him on abx???
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Dilly,
Same problem here with my children's pediatrician.
Walked in with a CDC handbook, looked at Igenex Western Blot's and said
"Oh good they're negative".
I knew I needed wading boots right then.
I perservered. Went over the Lyme specific bands/symptoms, etc.
Complete waste of time and energy. However, I tried.
Made an appt. with our LLMD. Took kids and basically did not inform or tell their pediatrician.
If by chance I have to take them to see her (local ped),
I won't tell her they are on zith.
I pay out of pocket for the LLMD visits so insurance has no idea about diagnosis.
I don't want this following them around the rest of their lives as a pre-existing condition.
I don't forsee a visit to the local pediatricians except to take out my son's stitches.
I will smile and tell her how well we are all doing.
None of her business if you ask me.
She works for me and my children and not the other way around.
How about if you don't treat my children, I will fire you and find someone more qualified that will!
Take a deep breath. It is going to be okay.
I mean every time my kids are sick, the pediatrician puts them on zith anyway.
These are your children. You decide what they need. You are a great Mom!
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
there is no chance of educating this ped,a nd there is no chance he is going to cooperate with any DR who is treating my son for Lyme.
i knew he wouldn't accept a Lyme diagnosis a year ago, when i first told him i was concerned my son might have Lyme. he finally agreed to write a script to have blood drawn to send to Igenex, but he saw it as a way of mollifying me, not because he thought it warranted. as we all know, in ISDA never-never land, there is no such thing as congenital lyme.
i went in to speak with him several weeks ago. i might have posted about the visit, i don't remember. i told him then, test results in hand, after already seeing dr. j, and after my son had already begun tx, that i knew he wouldn't accept the diagnosis and i wasn't asking him to, that another dr would be txing my son for Lyme. i told him i just needed to know if i could count on him to simply be our ped for everything else.
his answer today was his considered reply.
you're right, Vermont and Ali and Geneal and lmt and Carol and Tailz... this ped has to go.
the bottom line is that no matter how knowledgeble and good he is in other areas, he has chosen to NOT be my son's advocate when it mattered most. not good enough by a long shot.
i'm still concerned what goes into the record if i don't go see the ID doctor, and what implications there are to that, primarily for what happens next with whatever DR i find for my son, but also for my DH and myself. Given his mindset, i wouldn't be surprised if this ped thinks that i am just plain nuts and that i am endangering my son becaus of my own fixation on Lyme.
i know drs work for us, Geneal, at least on paper, but i also know-as you do too, i'm sure, that parents can be in put in jeapordy for not following the medical party line.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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This is really pathetic!! I'm so sorry, dilly! This medical establishmenet has gone nuts!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96238 | From Texas | Registered: Feb 2001
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
I agree that it just isn't a good idea to discuss lyme disease with a non-lyme medical doctor even if they seem like open-minded fair people. There must have been a mandate released for each of these doctors to adopt this stance against treatment for, or even against recognition of lyme disease.
But since it is after the fact, I am not sure what can be done. Can you somehow tell him that your child is now not exhibiting the signs of lyme disease? That all is well?
As anger-provoking as this is, I just don't think it is a good idea to alienate this or any other doctor for many different reasons, some I can't even quite articulate.
So many excruciating circumstances we have to encounter!!
Claire
Edit: Crossed posts with your last one, Dilly. Anyway, these are my thoughts.
Posts: 1111 | From Colorado | Registered: Oct 2006
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Any way to just get his records now, before the doctor has a chance to know if you go to the ID or not, before he can write anything negative about that?
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
THANK YOU, Lyme diva!
that makes absolute sense to me; and it seems it would solve one great big problem.
I don't want to be without a ped in the interim, especially given what is going on, but there is no need to explicitly fire the guy before i have someone else lined up.
Azure, thanks for your suggestion to look for referrals from local support groups0 i'll do that.
and i think we have our answer whether or not we can get by with just dr. J so many states away. the answer is no for sure, since there is no support system here, at least yet.
i know for myself that my great LLMD wasn't enough given how far away he is. the difference with children clearly is that it is that much more difficult to find anyone who will utter the word Lyme without turning tail and running for the hills.
i thought i was motivated before to help dr. J, even before i knew my son had lyme.
now i'm on fire.
thanks for the support, you such incredibly good people here on Lymenet. I would be lost without you.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
I am so sorry that you are having to deal with this.
I agree.. get a copy of the records ASAP. Other than that I don't know how to help.
I wish I did. This really sucks.
quote: how am i supposed to provide my son basic medical care when no ped will touch him and the Lyme docs in town don't treat routine ped stuff????
I used Urgent Care for my son when we were in between Peds.
-------------------- ~Ro~
Don't wait for someone to take you under their wing. Find a good wing and climb up underneath it~ Frank C. Bucaro Posts: 80 | From Desert Southwest | Registered: Nov 2006
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bettyg
Unregistered
posted
I am so sorry that you are having to deal with this.
Mailing Address: Office of the Attorney General 55 Elm Street Hartford, Connecticut 06106 email: [email protected] **************************************
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posted
This is so sad. I think doctors across the board are behaving badly. I think ultimately you're going to need to find someone you are comfortable with.
Posts: 13155 | From San Francisco | Registered: May 2006
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Suggest your pediatrician browses on Lymenet a bit. When he sees what the PATIENTS are saying, he might look into it a bit more.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dilly,
I am not one to promote Lying , but I would go in and tell this pediatrician
That after careful review, I concur with his egotistical, self-serving diagnosis (of nothing).
Go on from there.
I had to keep my children's pediatrician for the other stuff due to distance to LLMD.
Since my children have been on zith, they haven't seen the pediatrician.
Whatever illnesses they have had since starting treatment have been viral.
Zithromax is a pretty broad spectrum antibiotic.
I also have two neighbor's (one with Lyme) who are PICU and NICU nurses respectively.
They are treating their son as well out of pocket as their pediatrician doesn't believe we
Have Lyme here either.
Wait a week or two. Call leave a message saying you concur with his point of view
(try not to throw up as you say this), take your child and go on.
I think the ducks shift the blame to the parents/patients
(i.e. it is all in your head, it is not Lyme, etc)
But really, they are leaving themselves open for malpractice suits-big time.
No wonder nobody wants to recognize Lyme or chronic Lyme.
The financial burden placed on insurance companies would be staggering.
Probably a cascade effect that would lead to bankruptcy of the health care system as we know it.
MY pediatrician did suggest once that maybe I was seeing my symptoms in my children.
Once.
I said to her that my child's medical records would not support that.
I told her that these were MY children. I know them better than anybody else.
They came from my body. I nursed them, carried them for hours when they had colic, etc.
I had serology reports to support a diagnosis as well as symptoms as Lyme was a CLINICAL diagnosis.
I do remember saying to her "Let's not go there. The reprecussions from
A statement like that could really negatively affect your practice".
She backed out of that so fast it made my head spin.
Said she would look at any info I brought her regarding Lyme and did suggest
The children then see my LLMD.
I wasn't about to be intimidated by someone who knows NOTHING about Lyme disease.
Or the treatment of it.
How sad to think of the children missed.
You hang in there. I am not promoting lying, but we all do what we have to
For our children and ourselves with this politically hot disease.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
Quote from Geneal:
"The financial burden placed on insurance companies would be staggering.
Probably a cascade effect that would lead to bankruptcy of the health care system as we know it."
In two sentences this defines the crux of the problem. Trying to convince them to change their stance would be like trying to ask the sky not to be blue.
Our energies are better spent elsewhere such as focusing on bringing ourselves and/or our families back to health.
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Well, here is an idea..He will be suspicious of just asking for records...So lie some more and say, you are looking into some psych counseling and would like to have them review the records.
He should eat that up!!!! Because it is what he is thinking....All ducks belong in the oven. lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
You have the right to dispute anything in medical records you do not agree with. If and when you get records, write a letter, send it by certified mail. I am pretty sure it has to be placed in your record. It is part of HIPPA.
I don't know what size city you live in, but most new doctors are usually setting up practice now--just got their license. See if you can find someone new. Ask them if they will treat your son for everything but the lyme. Usually new doctors are more open and they need patients. Sometimes they advertiise in the paper. Pharmacists or nurses are good people to get referals from. You can also check out your state medical board. My state has a web site that has loads of information about all doctors that have a license in the state.
Posts: 177 | From God's Grace | Registered: Apr 2007
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I found some support groups and e-mailed them requests to help find a Lyme-friendly Ped. I'm praying that one of them can help. I don't know what else to do.
You're a very strong person Dilly, much stronger than me. I know you'll find a way through this.
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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quote:Originally posted by clairenotes: Quote from Geneal:
"The financial burden placed on insurance companies would be staggering.
Probably a cascade effect that would lead to bankruptcy of the health care system as we know it."
In two sentences this defines the crux of the problem. Trying to convince them to change their stance would be like trying to ask the sky not to be blue.
Our energies are better spent elsewhere such as focusing on bringing ourselves and/or our families back to health.
Claire
Yep, Geneal hit the nail on the head!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96238 | From Texas | Registered: Feb 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
This makes me so angry.
You've forgotten more about lyme disease than he will ever know.
When my daughter, 15 (who also has chronic lyme), has an unrelated problem, I take her to our local doc-in-a-box.
Such as like last year when she had a nasty case of MRSA that required a number of visits.
The topic of lyme is not brought up unless deemed (by ME) to be absolutely necessary.
If attending doctors express skepticism, and often they DO, I fix them with a withering glare and inform them she is being well cared for by a specialist; had she remained under the care of Redding doctors she would have been labelled with juvenile arthritis, fibromyalgia, and a host of other misdiagnoses, in spite of having numerous ticks embedded in her and despite having a CDC-positive western blot.
I find that ends the conversation quite satisfactorily and we can return to the reason I am there.
I hope you find a good duck soon who is content to leave the lyme management to someone who knows what he's doing.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
quote:Michelle said: doc-in-a-box
What a GREAT idea!!
Family Practitioners treat kids, don't they? If the "doc-in-a-box" in an FP, with a wonderfully prepared comeback like Michelle's (I know you can do that ), you should be golden!
Thanks Michelle! I'm making a note of this one myself. I've been looking for Peds, maybe I should look into FPs!! I may have a new tact. A way around the "Red Book" IDSA crap! Oh how wonderful that would be.
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
How about "duck in a box"
sorry I couldn't help it.
god forbid one of these idiots kids get Lyme- The ducks may realize it then, actually they still might not.
There has go to be a way to report the bad behavior of docs like this..
Melissa
Posts: 3905 | From USA | Registered: May 2007
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
lmt said - "all ducks belong in the oven"-
yep, right now that sounds about right. silly me for thinking a duck would respond well if i was direct and straightforward and absolved him of all Lyme responsibility up front and asked him simply tp do his job.
after a full day has gone by, it finally dawned on me just how flawed is his logic, and what an opportunity he has provided us to throw some punches in return. i'm thinking there is no need for us to feel on the defensive.
here it is. if he does not believe there is any possibility my son has Lyme, why is he referring me to an infectious disease specialist? what sense does that make?
If it isn't Lyme, what in the world makes him think my son has another infectious disease, and if that's what he is thinking, wouldn't it be appropriate for him to let us in on his thinking?
Since I made it clear that i'm open to hearing any and all alternative diagnoses,and to have my son tested for whatever else, i think i need to call him and call his bluff by requesting that he examine my son and send him to any specialists he thinks warranted given my son's symptoms.
i think having my son see a neurologist before he sees an ID specialist is fairly logical, don't you? i know that was one of the first paces I was put through. why is my son being treated differently?
i could be really wrong, but now that i'm calmer i'm thinking it wouldn't be too difficult to put this man in his place, and to be abler to use him to get tests done that maybe should be done anyway, BEFORE i fire him.
One possibility that haunts me now is that dr fallon may be right - that my son has active Lyme in utero for the length of time before i was treated, but not afterwards. so, long enough to have affected the development of his CNS, and that is what is showing up now, rather than active Lyme???
my son is awake and hitting and raging- have to go
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Thanks, sparrow and michelle and azure and the always sweet ali, for the ideas and help about who to look up for my DS's care. and thank you, all of you, who have written here for your very welcome support.
Without your support I think I'd be in a fetal position in a corner, crying and feeling sorry for myself and terrified for my son.
as it is, i'll check into your suggestions and scour the town for that rare soul who still believes practicing medicine is first and foremost about listening and working as a team towards healing.
as far as activism/doing something on the issues this kind of situation raises...
i'll be soon be going with a group of Marylanders to lobby in person one of our federal Senators or, at least her legislative aide who is directly responsible for health care issues.
i have never been reticent about speaking my mind, and man oh man is she/her staff going to hear about THIS sorry situation.
later on, when i have lined up consistent care for my DS and have fired this pediatrician- in person- I am going to write a letter to MD's State Medical Board.
I know nothing will happen for us as a result, but maybe if enough people complain mightily, something might change, at least an iota.
In any case, staying silent is not an option.
thanks again.. dilly Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
I am so sorry you are going through this and I feel your pain! My daughter is 18 and we left her pediatirician when she was about 15 when the Lyme was really kicking up and switched to a doc-in-the-box. We didnt knowe she had Lyme then, just that she had seen every specialist in the book and no two came back with the same diagnosis (CFS, chronic EBV, recurrent mono, etc)
Finally the Doc-in-the-Box ran a Wb and it came back positive. They then fired her as a patient when she wouldn't accept THEIR referral' s doagnosis of Fibromyalgia.
She's been seeing a LLMD for 4 months now and has not set foot in her PCP's office.
She will be starting college in January thanks to her LLMD's care. She will need immunizations which are prohibitiverly expensive if given by the out of network LLMD. I plan to take her to ANY PCP and not mention the LLMD or Lyme AT ALL until she is safely immunized.
Luckily, she has not been sick AT ALL since starting the Lyme treatment.
Good luck to you! This whole nightmare really sucks, doesn't it?
Posts: 217 | From New Jersey | Registered: Apr 2007
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Cobweb
Unregistered
posted
quote:Originally posted by lymemomtooo: ....All ducks belong in the oven. lmt
I think that's funny too, LMT.
Anyway- my daughter is going to her peed duck tomorrow for annual. And since we're moving I have the perfect excuse to ask for her records!!!!!
BTW-LMT know of any good , open minded ducks up your way????? Since Harford county is endemic...then again it's Harford county that's treating ONE DOSE DOXY they are so enlightened.
They're everywhere, they're everywhere...Anyway we can make ducks an endangered species?
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, but I would go in and tell this pediatrician![[Eek!]](eek.gif)
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), you should be golden!![[hi]](graemlins/hi.gif)
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