posted
I guess I'm still in a state of shock. My daugher's ID doc told me that he thinks her symptoms are psychosamatic.
Even though she had the bull's eye rash, tested positive for lyme and has been sick for over a year (she had mono, paravirus, kidney infections previously) which have all been documented by her docs.
I can't take much more of this. I have to find her a new doc that can help her, but why don't any of these lyme doctors take health insurance? It doesn't make sense to me.
Posts: 11 | From Maryland | Registered: May 2007
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi fedup,
Unfortunately, very few doctors understand or are knowledgeable about tick borne diseases.
Your doctor's response shows that they know nothing about lyme and tick borne diseases. That doctor will be of no help to your daughter.
I totally agree with Kit; you need to find an llmd lyme literate doctor as soon as possible for your daughter.
I think many of the llmds do not take insurance because of the political issues surrounding the disease and its treatment. That is why the Connecticut Attorney General is formally investigating the IDSA.
However, even if your llmd does not accept insurance up front, very often you can submit the receipts to your insurance company for partial reimbursement.
You need to read over your health insurance policy carefully, but it would be unusual if you did not get any reimbursement.
That just adds to our (the patients) work, but that is the way it goes.
Good luck, and I hope you find a good doctor for your daughter soon.
Posts: 2557 | From home | Registered: Aug 2006
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
fedup, once you get a decdent Lyme doc to treat your daughter, from what you have said about this ID doc, I think you ought to consider suing him.
Where do these docs get off with this kind of 'mis-diagnosis', especially in the face of all the evidence that points to Lyme?
BTW, I'll bet at least 80% of us here have been told our symptoms are 'all in our head' or psychosomatic.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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posted
The duck at one of the top hospitals said the same thing about my son. I can't tell you how important it is to get a LLMD! After a year of treatment, my son is slowly getting better (he has been chronically ill for seven years).
Please don't give up and fight with everything you've got for your child's health. Keep searching and don't blindly accept what the ducks say! I shudder to think where we would be today if we had done this!!!!
The ducks think they know everything and don't like it when you question or disagree with something. You can bet that if someone in their family had this terrible disease, they'd be following the same treatment for which we are fighting for (and for which our brave LLMD's are being wrongfully persecuted for!).
I thank God for Lymenet and for all the support I've received. I'm always researching this website looking for things that will help my child. I highly recommend you do the same.
My heartfelt wishes go out to you and your family. Never, ever give up! God bless you.
Posts: 8981 | From Illinois | Registered: May 2006
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Greatcod
Unregistered
posted
A doctor who says that is simply saying "I don't know what it is. I am not sufficently smart or educated to make a diagnosis. You should see some other doctors." Of course, they are incapable of uttering that simple truth, so they use the lame psychosomatic diagnosis to smooth their ego. Find an LLMD for the sake of your child. ASAP.
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Dear Fedup, I was infected in Maryland and was told by every doctor at every hospital I went to that I was psychosomatic and had postpartum depression despite a huge bull's-eye rash. I went to a Lyme support group in Westminster and was directed to Dr. S. in Towson who saved me from babesia.
Dr. S. no longer calls himself an LLMD but I do think he still helps Lyme patients. I now go to Dr. C. in SE PA. Lyme-literate doctors don't accept insurance because of harassment and possible loss of their medical licenses for not following IDSA guidelines and for prescribing long-term antibiotics.
Yes, many insurance companies will partially pay for a visit to an LLMD if you submit the paperwork yourself. Mine, unfortunately, will no longer reimburse.
Best to you and yours - Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"My daugher's ID doc told me that he thinks her symptoms are psychosamatic."
Nothing like getting my blood boiling!
I am sitting here thinking.. You should tell him this.. and that.. and this and that!!!!
Ahhhhhhhhhhhhhhhhhhhhhhhhhhh!!!!!!!
Actually.. I think I am going to make some of those plastic stand up toy figures (with sand-bags on the bottom)... of ID ducks. You know the kind they use to make years ago that stood about 3-4 foot high... that you could punch and punch and they would roll around and stand back up so you could punch them again.
This ID duck needs to be taken out back behind the barn for a good old fashion whooping... but since that isn't possible... an education wouldn't hurt... BUT.. he won't BE educated with that arrogant itty bitty brain of his.
And you'd have a problem trying to stuff the Lyme medical literature in through his ear to sink it in is his brain.
I have a suggestion for you. If you email me.. using your screen name... and telling me where you are in the state... and what you needed.. I will respond.
I am SO sorry this happened. It happens a lot. SHAME on them!!!
posted
Yep, that's the diagnosis I got, even after my CDC positive Western Blot.
I agree, get to an LLMD.
Personally, if I were an LLMD, I wouldn't accept insurance either. They already have to fight to keep their license, fighting the insurance companies would be too much to expect of them. They would be even more expensive if they did do all that insurance work because it would require more personnel, and there are people out there who wouldn't pay if insurance denied the claim ... it would cost all of us more in the end.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
that happened to me as well and the worse you get the more they will say it is in your head... eric
Posts: 593 | From long island ny | Registered: Apr 2006
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posted
I think they are too arrogant to admit they don't know. So instead of being honest and saying "I don't know" they give us a "mental" diagnosis.
Every time a see a doctor I'm a nervous wreck and they say I have anxiety. Actually I'm a very calm person but as soon as I walk into a doctor's office I know I have to try to "prove" something is wrong because they won't believe me.
When I go see my llmd I'm totally calm. He doesn't think I'm crazy. IMO, the worst are neuro's and large teaching facilities. They seem to be the most arrogant.
Posts: 340 | From Ohio | Registered: Oct 2005
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
YES! Cried all the way home.
But, that's when I got on the internet and started doing research. Would still be on the "specialist" merry go round if he hadn't said that. Got me ticked enough to start doing my own research.
I now distrust every doctor I see. They have to work twice as hard to convince me.
posted
We have a influential infectious disease doc in our area that is keeping any our local docs from learning about lyme with his psychosomatic rhetoric.
I know people that have gone to him with CDC + results and they were told they needed psychiatric counseling.
I know doctors that have requested he sit on review of patient cases and he has belittled the treating physician in front of other review physicians for treating lyme stating that it was psychological.
Patients in my area are usually treated with anti-depressants because they can't get out of bed and muscle relaxers for the pain.
But I don't want to sound so grim, the number of cases continue to grow, good information continues to get out and Dr Psycho ID will either come to accept LD is a real disease or he will be run over by it and look like an idiot.
elle
-------------------- When I feel blue . . . . . . its time to take another breath Posts: 296 | From East Coast | Registered: Aug 2005
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Get the ID doc to put in writing that his diagnosis is that she does not have Lyme disease and that it is psychosomatic. You might find such a letter useful later, if you decide to consult a laywer.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I agree with GreatCod and others. The run of the mill doctor will not admit when they don't know what's wrong and instead tend to blame the patient. Check out the recent thread on here about outrageous things that have been said to patients.
When I was told that I needed a psychiatrist (usually after I presented my long list of symptoms) I learned not to take it personally. I know they are following a cookbook type of medicine and not using their brains.
I was sent to a psychiatrist after numerous standard tests were normal but most (not all)stopped when I had the audacity to go to a research hospital where they discovered that I have some serious, provable abnormalities. It's hard to tell someone that it's all in their head when tests prove a low blood volume, low red blood cell mass, messed up hormones that control fluid levels etc.. Some still try but I don't accept it. I pity them that they are so crippled in their job that they can't help people who are so obviously ill.
Tincup you crack me up. Not easy to do these days.
As far as insurance. We have actually lost LLMD's who accepted insurance because they had to go bankrupt when the insurance company suddenly stopped paying and wanted past payments back, all because the LLMD was not following IDSA guidelines. Insurance companies apply brute force to doctors all the time (not just with lyme) in an effort to get them to comply with the cheapest way to treat patients. LLMD's cannot allow themselves to be forced to curtail treatment for lyme patients.
Know you are not alone. Get an LLMD and don't take the ducks comments to heart.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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You know your own child better than anyone else and you have the test results to back you up. Sorry to hear that your child has been sick for a year.
Today marks the one year anniversary of my son being on abx. He is so much better than he was and I know he will make a full recovery but maybe it's going to take another year.
We are lucky enough to be under Dr J's care. He has now seen 7 paediatricians in UK and France (where we live) who have failed to come up with a diagnosis despite my protestations that he has Lyme. (CDC Igenex positive doesn't seem to count) Yes, the main paediatrician thinks his symptoms are psychosomatic but I know they are not. It's only his opinion which isn't worth much as far as I am concerned.
Trust your instincts and see a LL paed. I would mortgage everything to make sure my child gets better.
Hang on in there. It's a bumpy road but children do make a full recovery. Just keep trusting your instinct.
Best wishes Chiz
Posts: 67 | From UK | Registered: Oct 2006
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posted
Sorry, I have just reread my post which sounds a bit confusing.
The 7 paediatricians that we have seen in UK and France don't have a diagnosis. Thankfully we have seen Dr J in CT. We have been through a really tough time but Dr J gives us hope and strength.
My son is getting better. It's tough being a parent through this illnes but please see a LL paed. Your ID doctor is doing you no good.
Chiz
Posts: 67 | From UK | Registered: Oct 2006
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Probably most LD patients are told that, I was told I had "emotional" problems and one MD said "anxiety". My husband with LD was told he was Somatiform (technical word for hypochondria).
Have you ever seen the lyme documentary clip that is suppose to be coming out (hopefully) this year?
Listen to some of the diagnoses these patients were given for Chronic LD. Go to the website below click on "view trailer". (If you can't watch it, you will need to download the viewer. Way down in the left hand corner is a "Q" click there and you can quickly (for free) download it and then you will be able to watch it): http://www.lymediseasefilm.com/
savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
Oh yes, it is all in your head diagnosis. What a load of s@!t!! When I first got that diagnosis I cried, now when I hear other lyme victims getting it, I get angry.
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