posted
Hello, Everyone. Yes, yet another desperate plea from a Mom in southeast PA who herself is dealing with chronic Lyme and getting nowhere fast seeking a GOOD, honest, trustworthy oh, and the most important ---- TAKES INSURANCE-------- not cash only deal where we wait 7 hours in the freakin waiting room----DOCTOR. ANthony is deteriorating and husband is in complete denial, but he has Lyme as well and so does my 16-year-old whom I believe was misdiagnosed with ASperger's syndrome and severe ADHD 8 years ago. Sandy L. has been a wonderful help to me here, but waiting for a CT doc is just too frustrating watching my son in excruciating pain and dealing with school district who denied homebound services while he continues to be in a "stoned" state at least that is what all the kids at school believe! Help, please.
Posts: 7 | From West Chester, PA USA | Registered: Aug 2004
| IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Emailed ya Not sure on the insurance thingy call and ask them.Good luck
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
| IP: Logged |
quote:Originally posted by lou: Should we assume you have already talked to the support group people in that area? They will have the most up to date info on docs.
Very few LLMDs still have contracts with insurance companies. They have been cut off, so you are looking for a needle in a haystack.
Posts: 7 | From West Chester, PA USA | Registered: Aug 2004
| IP: Logged |
quote:Originally posted by lou: Should we assume you have already talked to the support group people in that area? They will have the most up to date info on docs.
Very few LLMDs still have contracts with insurance companies. They have been cut off, so you are looking for a needle in a haystack.
Gee thanks Lou, real optimistic there. I have the microscope on and quite frankly as I have told a number of doctors, one in particular at duPont who told me my son does not have Lyme, but fibromyalgia........that he must think I'm naive and stupid. Quite the contrary, beyond pissed off after 2 years of being told this kind of crap from doctors whom I don't put up on a pedestal because they have an M.D. at the end of their name. I was told by 3 lyme literate doctors that I know more about lyme in the tri-state area than 99% of the doctors but what good does THAT do me if I can't find a true lyme doctor to treat my son? I'm NOT a doctor nor pretend to be one, but by damn it nobody better mess with a mother's instinct or a mom on a mission to help her child(ren), esp. a hot-headed Lituanian/German/Italian bullhead like me! Boxing gloves have been on in full force esp. since school district is playing God, again. Love to know what my blood pressure is at the moment! So, not picking on you Lou, don't get me wrong, but I'm NOT giving up here either. jo p.s. I've been in contact with local support group and people all over the country and not getting anywhere while my son deteriorates.
Posts: 7 | From West Chester, PA USA | Registered: Aug 2004
| IP: Logged |
posted
I know you are frustrated and angry, but it doesn't help to kill the messenger. Doesn't change the news.
A lot of people are desperate. These are desperate times. I have had to make two and three day trips to an out of state doctor for lyme treatment. These are miserable trips. No one closer takes insurance, for the reason I mentioned. Who knows how long that will last?
Harness your anger to productive ends--getting treatment for your child, fighting the system, along with other activists. Legislation was introduced in your state to improve this situation. Maybe you should be supporting it.
Just don't bark at people here. They are pretty fragile.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
The situation we are thrust into as mothers of children significantly ill with this very serious disease is deplorable, gut-wrenching, and terribly, terribly unfair.
That said, you must now channel yout energy and even anger into the fight if your life to get them (and you) treated and well again.
Please condider this carefully, and do not accept less than a very experienced LLMD. No matter what the travel or cost, it truly is your best (and only) way out of this..
And the alternative is grim. Years of battling with no results, and almost sure regression in your illnesses is the only alternative, actually.
Pull it together and get with an LLMD to treat you all. This is your only way out, and not doing it will result in allot of pain for you and the kids.
Then, when you guy are on track ,come help us fight the system!
This is a great support group to help you find the best Doc you can..screw insurance..
They will do it to you, anyway. This is your health, and future on the line.
As far as school, your son, based on his condition (regardless of the diagnosis) is disabled..under 504 regulations he is entitled according to federal law to FAPE (free appropriate public education)..which includes home-tutoring if necessary.
You can call your regional 504 dorector and report this, and write a letter to the school alerting them that you have become aware of your son's rights. Find an Ed advocate, they can help you.
He will qualify for both 504, or Special Ed modifications under IDEA. An advocate can help you decide which is best in his case..some kids need both.
I believe the Grenwich Lyme Disesae Task Force is very up on all this for kids with Lyme and dealings with school.
Mo
[This message has been edited by Mo (edited 25 September 2004).]
Posts: 8337 | From the other shore | Registered: Jul 2002
| IP: Logged |
quote:Originally posted by GreanPea: I bet I can guess who your last LLMD was...
Now that's the second time I mistakenly did THAT in my fog completely without intention i.e., hitting the submit button without putting anything in the box!!!!
Lou, I said I wasn't yelling at ya, geez. As for the fragile ones...........I'm ONE OF THEM, if not the most fragile at the moment. Let me explain and I'll be as brief as I can, but get the jist across: I'm an only child to elderly parents, lost Almost all my friends in past 15 years due to all the problems I'll try to describe here. Family was blaming the parents for not disciplining their children and didn't want to hear that there might be a biochemical problem it was all basically DA MOM since I was the one with them all the time. Fought the husband for 6 years who was in denial. After 6 years, got a diagnosis for older son of Asperger's Syndrome and severe ADHD. Throw in there a diagnosis of cancer for me, Lyme, losing father-in-law; brother-in-law all within a 2 month time-frame as well. THEN fighting the School district for 4 years for an APS for older son. Meantime the son I begged for help here starts to go downhill each year starting in 3rd grade with pneumonia, bronchitis, every virus he comes in contact with, etc. Also had a TSS/mobile therapist/behavior therapists in the home 52 hours a week to deal with older son at that time. Couldn't take it, made him worse and canned the whole thing. Older son completely turned around. That just doesn't happen with Autism. You don't grow out of it, it just doesn't get better. I'm fighting the husband on the entire Lyme deal as he calls me the lyme lunatic. You think every symptom is lyme..........the whole world has lyme....He's in denial that he even has it!Meanwhile the stress of all of this I believe has made my illness unbearable. No help here at all, no support and I'm literally at the end of my rope as husband does not understand why I'm so exhausted and in pain---------------and finds that as no excuse not to have the house in perfect shape. I was hit by a tractor-trailor 19 years ago, have not worked as a professional since that time, so I have no say as to whether or not I can take my son to a doc who does not accept insurance. He says no, he's not paying and that's it. I've lost count the number of times I think I 've had mini-breakdowns.................and wonder when I truly am going to lose it. I'm trying to hold it together for both boys, but I'm hanging on by a thread feel like everyone is pulling a piece of me in each direction and I'm just going to come apart like Gumby if he were old and a dried out piece of rubber! So there, I vented, left out components as allergies are leaving my head feeling as if it is going to explode this morning so if there are any incomplete sentences, missed punctuation............try and understand. Know I'm not the only one going to bed exhausted, getting 7 hours of sleep and feeling exhausted when they wake up? ANd it all starts all over again.............."Hon..I'm hungry----MOM, where is she? AT THE COMPUTER---AGAIN?" The troops are calling for pancakes, bacon and fruit, the works so back to duty I go. Have a good day all and I do appreciate your help very much. There were quite a number of docs some of you e-mailed me that I had not heard of before---to the tune of maybe 9-10! As for the last Lyme doc? Let's see if you were right-------------From Colmar, PA, and no, not allowed to go back to him as husband refuses to pay for him. Actually I refuse to sit for 7 hours waiting for anyone! Have a good day.....Joanne
Posts: 7 | From West Chester, PA USA | Registered: Aug 2004
| IP: Logged |
Lymiedad
Unregistered
posted
The Lyme Disease Association gave me a list of pediatricians in New Jersey. Email them with no delay.
IP: Logged |
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Joanne, I do not pretend to have any good answers for you..But I do know some of the Hell that you are going thru..No one can understand what a mom is going thru unless you are one of us..There are many on lymenet and I would imagine that some of them are so deep in their struggles that they have not had time to talk to you.
You must first try to calm down as hard as that is or you will self destruct and who does that leave? An ostrich in the sand dad??
Where would your kids be then?? Many here will help you if you take a breath first..I would be put away myself it it weren't for lymenet and the local support group...and some dear friends..
The stress of lyme is difficult on marriages..Many here can attest to that also.So beware. Sometimes a poor excuse for one would be better than none. There is always hope that yours will come around..
My husband was a difficult sell for a long time.. Our daughter was first diagnosed with severe depression and had to be in a juvenile psych ward before he woke up. He has some family history of depression so guess was hoping it would go away and not be a genetic thing. He even denied it a couple of times on medical forms..
When he has lived thru the hell of it for a few years, he is now a believer..Even before we finally got positives on tests. He was on board..Think it happened when he realized we almost lost her to a suicide attempt. (Have had a few)Just don't count him out yet..maybe a 2x4 would work..
For the ?'s. I do not know of any local llmd's that take insurance..One in Glen Mills will take medicare, I think, but that is all. He is the most reasonably priced that I have found, and a very nice gentlemen. My daughter prefers female docs so we switched to one at Mendenhall. A great lady and we'd be up a creek without her but she is pricey.
I run a small museum, promote a community festival, was co-chair of our towns sesquicentennial and help sponsor our town's Christmas Fair.. I do my work when my daughter sleeps..I am always exhaused and my house looks like hell.. I never get things put away..so I know what it is like..I am running from one project to another..I did find some cobwebs the other day and think the spiders wondered what the Hell was happening..
I do fix some mean dishes and some good treats so keep the beasts off of my butt thru that..Think my husband has turned a blind eye for the moment to my clutter. I figure, that cleaning will not save my child's life, but researching may..
Since my daughter has been sick, we have lost both of our father's(3 months to the day apart) and my mother has serious heart problems and has had surgery and the Dr. said it could be any time or it could be a few years,just to not bother to recussitate.
She also is a 2 year survivor of breast cancer and is 89..I just pray that she and my daughter are not both critical at the same time or it will be a hard decision.
Due to her heart condition, we have had to lie about our daughters health and conceal her hospitalizations. Our daughter also had diabetes so we usually blame it on those problems..It is hard to conceal over 10 slash marks to wrist however so we convince my daughter to wear jewelry or long sleeves on trips to see mommom
The year mom had breast surgery, I spend my Christmas going daily between our home and the hospital.I fixed breakfast, forced the kids to open gifts and fixed food for the inlaws dinner..Than a mad dash to the hospital. I ate christmas Dinner at the only McD's that was open.
I try my best to fit her in to help her but she lives in Dover, De and it is a 2 hour trip..
So not to belittle any of your problems, but I think we all have our own horror stories.. This is a long journey and so far, I have found no quick fixes..As mom's we are supposed to protect and heal our kids. Lyme and it's co-infecitons will not let us do our jobs so it is gut wrenching for us. I would bet that we all have some ulcers. Just continue to fight and try to relax..Stressing will not help..
You are in my prayers and I will pray that you find some answers.
posted
My 2 congenital lyme children and myself drive 7 hours each way to see our doc who takes insurance (not why we chose him).
We had appointments with your previous llmd but had to cancel for other reasons, now I guess I'm glad we did.
I think most people travel quite a ways to see a good competent llmd unfortunately. And if you have the requirement of them taking insurance that might narrow it more but I'm sure there is one out there. Just like Mo said though, make sure whoever it is is the best doctor for your kid.
posted
Boy, so much misery in the world, intolerable that people have to cope with so many problems, sometimes with almost no support and understanding.
Wish I could help. Just keeping myself going is about all I can manage, though. Sending a hug out to all of you on the ragged edge too.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
quote:Originally posted by lou: Boy, so much misery in the world, intolerable that people have to cope with so many problems, sometimes with almost no support and understanding.
Wish I could help. Just keeping myself going is about all I can manage, though. Sending a hug out to all of you on the ragged edge too.
Thanks for the hug and for everyone's help. After spending God-only-knows how many hours on the puter last week (enough to have a numb tush & legs!) I was able to narrow down and place Anthony into a virtual cyber school with a very flexible schedule. Anthony's attorney is pised at me, but the way I see it waiting for yet another answer from the school district only places Anthony in more danger in that if he misses school for illness, they consider it an illegal absence or truant. We went through this in the Spring and I don't care to have to deal with the District Court yet again. At least 6 months will be wasted and who will be hurt more in the long run? Anthony, of course. He will be further behind in school, depressed due to the illness and falling behind and not doing well. Told the attorney we don't need any more of the bull****, plain and simple. Fingers crossed that this will work. As for the Doctor, we are set up for an appt. with Dr. Bellesorte for MOnday and Dr. Jones' office called saying no appts. until Dec./Jan, but he will consult with Dr. B. which is greatly appreciated. I need help as well, so Dr. B. will have the entire family. Entire area, developments surrounding us, almost every house is hit with Lyme. Something needs to be done. Take care, JO
Posts: 7 | From West Chester, PA USA | Registered: Aug 2004
| IP: Logged |
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,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic