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Post by ctbarb on Nov 3, 2008 20:39:52 GMT -5
I received a certified letter from my Pulmonary/Critical Care/Internal Medicine Group last week. The first paragraph states: "The purpose of this letter is to inform you that we will no longer be responsible for your pulmonary care. We are sorry to have to come to this decision, but it has become increasingly difficult for us to continue to provide the care that you require." It goes on to state that they will be available until 11/16/08 for emergency care and they strongly suggest that I use this time to locate another physician who can provide for the care that I need.
I was sent to an infectious disease doctor in their medical group by a critical care physician after he viewed the large samples that were appearing in my stool. Some looked like large slugs/snails, others were bright red double lobed organisms about 2" long, etc. I met with the ID specialist about 2 weeks later. After a cursory examination, I was told to bring the same samples with me, I showed him the bottle with the obvious organisms (I know, matchbox syndrome), and he would not even look at it from across the room. He told me to get dressed and he would return. Upon his return, he sat down and informed me that he knew what was wrong with me!! I was elated! Finally, someone would actually send the samples to Pathology and get a diagnosis! WRONG!
He then told me that what I needed to do was to make an appointment with a psychiatrist and that there were meds that I could take to solve my delusional issues!!! He would be very happy to make the contact for me anytime I so wished. I was aghast! Boy, did I get sucked in. He was slick, I can tell you that. He is about the 25th doctor I've seen in the last 10 years...however, it is now a part of my medical records for all to view.
That visit had to be the most detrimental, demoralizing, destructive, and devastating diagnosis yet! I was literally shaking and told him that I didn't require the services of a psychiatrist at this point. Thanks but no thanks.
And then I get the certified letter.....Has anyone else been the recipient of such a letter from their physicians? Do I need to find legal help? I know they can refuse to see you, but I am very ill, yet now I will have no ongoing care. My PCP won't allow me to discuss my illness "until such time as you get a diagnosis" is what he told me! He also knows all of these doctors and talks with them! Sounds like he's sick of me too! Wonder when I'll get a letter from his office?
I need all the suggestions, help and moral support I can get at this point. I know I don't post often here, but I know how intelligent, inquisitive, and morally minded and caring that you all are...and I thank you for the help you give to others. I never dreamed that I would be here asking for help, when I'm usually the one giving to others. I'm usually a strong person when everything around me is collapsing...now I'm not so sure that I will survive this time.
Thanks again for listening - you are all wonderful folks!
Love and hugs,
ctbarb
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Post by felixwillford on Nov 3, 2008 20:54:00 GMT -5
Barb,
I am so sorry to hear you suffered this injustice and disregard for your NON delusional medical condition.
There are no words to express my disappointment with the medical persons and this Infectious Disease MD should have examined you, and HE should have to PROVE you ARE delusional instead of us having to prove we are not.
Why can't we switch the burden of proof to be their resposiblilty? Why aren't we non delusional until proven delusional?
They should have to PROVE without a doubt scientifically that this is indeed a delusion. Otherwise it is merely their useless uneducated opinion.
Love back to you,
Kmarie
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Post by ctbarb on Nov 3, 2008 21:02:58 GMT -5
Dear KMarie,
Since when does an ID specialist diagnose mental illness? He has done it since it is now in my medical records. Even though I have not seen a psychiatrist for this "illness", why is he able to make such a devastating entry in my records? I agree with you about turning the tables on them, but I am so upset and angry at how they use their medical degrees! I thought "Do no harm" was part of the Hippocratic Oath? Guess they don't adhere to those oaths any longer.....
Thank you for your caring.
Love,
ctbarb
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Post by felixwillford on Nov 3, 2008 21:08:46 GMT -5
How can anyone diagnose a delusion without proving it is a delusion?
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Post by toni on Nov 3, 2008 21:08:46 GMT -5
OMG.
I'm so sorry. There is nothing more devastating to a human than what you've been through, and dangerous, because you're probably only on "an emergency basis only" with your needs for your health.
I know this won't help anything, but from what the infectious disease doc said, makes me think they've either all rehearsed the same line of baloney, or you've been to the same doc in Los Angeles I saw. Same exact words. I know that excitement...when they say they can help! And only to be dropped from a million miles up where those words put you - to the ground when they say the word (psychiatrist)...is the cure.
The very very best thing I know that helped me, were the words from my hubby after that visit.
I almost felt like "I wanted to die"...because I truly felt like I actually died already and was living in TRUE HELL itself. Like I went into some time warp, and everything around me wasn't real...because how could it be? How could the doctor say something like this when he could clearly see something was wrong.
That doctor, actually made me feel hopeless. And that IS the worst thing a person can do! EVER.
Then the words of wisdom came from my Mr. Toni. He said "that doc can go jump in a lake"....and we'll find another. I know that's nothing profound, but...it helped me not feel "hopeless" like that doctor made me feel. Because it's overwhelming that feeling of what to do now that comes over. Like I know you probably are feeling right now. But don't feel that Ctbarb, there are others that might even do more.
And this might be (I pray to God it is) a blessing in disguise for you.
Maybe the next doctor they refer you to, or that you find, actually finds a reason for some of this and can help you even moreso than this doctor you were seeing.
This all is unreal.
Keep yourself as healthy by what you eat and drink as you can. I'm so sorry this has happened. Big giant hugs, and love to you, and care, and I hope to God you can find a real doctor soon that will help you.
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Post by felixwillford on Nov 3, 2008 21:12:32 GMT -5
I agree they definately do great harm when passing out this mental condition like it is Halloween candy without it even being their area of expertise.
The S.O. B. didn't even examine you or run any diagnostic test.
They should have to pay for their actions!!!
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Post by toni on Nov 3, 2008 21:13:49 GMT -5
The infectious disease doc in Los Angeles Calif I saw, was going to call for me he said ( a psychiatrist here in Nevada )!
He said he needed to talk with whomever I saw!
Now see...something looks fishy about that too.
Why? Why would they need to "talk"?
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Post by ctbarb on Nov 3, 2008 23:21:32 GMT -5
Dear KMarie and Toni, You are both right on target...Toni, I think that this particular ID doc had been called by my PCP who is thoroughly fed up with my situation. I called the PCP's office the day before my appointment just to see what would happen, and it did! I had previously requested to see another ID doc who I had seen in the hospital 2 years before when I supposedly had pneumonia of undetermined etiology. I got a call from that doctor's office telling me that "I would never, ever get an appointment to see him! Not now, not EVER!" I was so stunned that I didn't know what to say! Since when does a doctor's office call a prospective patient and tell them that they won't ever see them and to not bother them??? When I hung up, I just sat and cried with frustration. I was so embarassed and hurt at what she had said to me. I'm not one to complain, but I think it's time to file a complaint with the medical board or seek legal counsel. What do you think?
Thanks for your honesty and caring.
Love & Hugs,
ctbarb
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Post by cyn on Nov 3, 2008 23:37:01 GMT -5
Hi CT,
I have had one of those letters from my personal care physician. No real loss there, just a hassel. The infectious disease doc I saw gave me a similar routine from across the room. He actually acted scared of me. Might be, these are the only docs that had warning. Or they just keep up on the new emerging diseases better than others.
I know exactly what your are going through with your stools, after a while you just stop looking. I am sorry you are seeing this also.
I do not believe you have any recourse legally.
I do believe that both of us would benefit from a diagnosis. I hate throwing more money away to hear something I already know. I should have gone to see Hildy before she got so busy.
It gets worse than a I.D. Specialist making a diagnosis out of their field, cops do it everyday, anytime they haul someone off on a 5150 report, they are diagnosing us as a mental case, then every doc you see after that goes by the cops statements.
What a money making racket that is.
Anyway, truely sorry to read your news. All you can do is keep on looking for that special doc.
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Post by ctbarb on Nov 4, 2008 0:40:23 GMT -5
Thank you Cyn for your comforting words. I just can't ignore what is coming out, they are just too big! They are also coming out orally as well...just not as large, thank Heaven! When they start doing the backstroke like Michael Phelps, then I'll probably stop looking! Whenever I try to eat, it seems like they all rush to the same area waiting for the food and then the horrific loud noises start and so does the severe abdominal pain. I don't even feel like eating anymore...I've already lost almost 50 lbs. Not much stays down or in...at this point. Do you have the same type issues? No one seems to talk about the internal stuff that's happening, just the fibers...WHY? Because it's so gross? We really need to compare notes on this stuff. Thanks again for your reply.
Hugs, ctbarb
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Post by mfromcanada on Nov 4, 2008 1:22:51 GMT -5
ctbarb, I have had similar experience with my fibers, not stool samples, and have been refused care now by 5 different doctors, 2 dermatologists, 1 infectious disease specialist, 1 internist and 1 clinic g.p. I can't stand how we are being treated. Its like these doctors are living in the dark ages. If it wasn't too long ago they would be burning us at the stake. This treatment has to stop. Why won't anyone help us, this is soo frustrating and humiliating...Poor ctbarb..
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Post by chaosonline on Nov 4, 2008 3:01:01 GMT -5
I just want to mention here that I have had the best response regarding 'Morgellons' from my Lyme doctors. It took me some time to even broach the subject but I was quite surprised when my Lyme literate heart doc told me he had treated others with Morgellons and had been researching it for over a year!
My Lyme practitioner initially said she had never heard of 'Morgellons' but later changed her tune.
Does your state have a Lyme Disease Association website? If so, they will give you the contact info for the Lyme literate docs in your area. They will probably also be able to give you info on what insurances each doc accepts. The Michigan Lyme Disease Association literally saved my life by providing me with the doctors I see now.
I recently had a positive Lyme and erlichnosis test. I had previously tested positive for only babesia. The main thing that was added to my meds when I mentioned I had 'Morgellons' was Artemisinin.
Karen
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Post by felixwillford on Nov 4, 2008 3:38:49 GMT -5
Chaosoline,
Excellent suggestion. I know a physician who told me that they just DO NOT teach MD's about Lyme disease in Medical School.
When I went to Nursing School in the early 90's it was Only Mentiond and then we were told that it was rare and only on the east coast and the only way to get Lyme was thru a TICK.
WRONG................... I believe Lyme is Sexually transmitted just like Lyme's relative the Syphylis spirochete (sp). I think it is very prevelant and due to the the ignorance of so many to keep Lyme Quiet.................people are suffering and Lyme message boards has people complaining of morgellon symptoms.
Morgellons sufferers are also matching with Lyme symptoms.
I was given a nerve conducton study and have ZERO sensory nerve impulses coming from my lower legs causing sensory neuropathy. THIS IS A LYME SYMPTOM.
Yest the LYme Titer from 2006 was negative. It was not the good Igenex Lab test.
My neurologist has scheduled another Nerve conducion study for my hands and arms since my legs turned out "bad". It will be done on Wednesday.
All this illness we have to suffer is just WRONG and sinful (sp).
Seeing a Lyme Doc is a GREAT IDEA for all Morgellon sufferers.
Very happy to hear you have found someone who has been researching Morgellons for over a year!!!!
That is sooooooooooooo good to know.
Chaos,
I do hope your "heart" is ok..... I notice that your post states the Lyme Doc is a heart Doc. Lyme definately does affect the heart muscle and blood vessels.
I have a friend who is going blind from Lyme/morgellons. ( the blood vessels in her eyes are affected )
Lyme is serious and so is Morgellons.
THe World really needs to understand that.
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Post by gradysghostii on Nov 4, 2008 8:16:42 GMT -5
Wow, what a great doctor, and he made the diagnosis from across the room even, must be one highly trained individual.
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Post by sammy on Nov 4, 2008 8:55:44 GMT -5
I got a shrink evaluation first & then took my lawyer to my doctors appointment. Let's say, the view changed greatly.
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Post by sammy on Nov 4, 2008 10:31:19 GMT -5
I would like to know, are you guys telling the CDC about every doctor who refuses treatment , SINCE they keep telling us to go to doctors for this illness. Have all those with DOP's told the CDC who put it into your records so you can't get treatment from any doctor. Or has the National health foundation been told or the Board of Doctors?
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Post by gradysghostii on Nov 4, 2008 11:13:09 GMT -5
The CDC is the reason we can't get treatment, remember, they dedicated 300k to this study, the price of a crappy home in California to solve this plaugue, I mean, you could probably get a 3 million dollar grant to study the song of the field cricket if you tried. Let's get real, the reason there is no diagnosis, no # to put down on the billing for insurance is because of the CDC.
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Post by imblownaway on Nov 4, 2008 11:54:39 GMT -5
ctbarb
Was this doctor aware of the kaiser study? I have gotten the best results when bringing documentation about it. If he was aware of the study and referred you to a shrink seems to me like there would be grounds for legal action. We could flood his email address with links to the study and such. Just a thought.
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Post by greta on Nov 4, 2008 15:37:31 GMT -5
Do not give up. Stay open minded. Please, the doctors do not know any better. They are trained to think that people who present with stuff coming out of their skin are delusional. Most doctors are not open minded. They are supposed to send you to a psychiatrist (another type of medical doctor). This is a new disease and we have to remember that to the trained eye, it really does appear that we are crazy. I know it is hard to tell a sick person to tolerate this treatment when I know full well that in ideal world any doctor would actually try to respect what a patient is trying to tell them. IMHO this (mis)treatment actually does cause psychological harm to us -- which ironically, can be helped by a psychiatrist. I know this because I have been there. My PCP sent me directly to the best psychiatrist she knew of. Knowing full well that I was not imagining the fibers in my skin, I reluctantly agreed to see him. Honestly, at that point, I was willing to take any help I could get. Plus, I was really hoping he would take me seriously and tell my PCP that I was sane. Luckily, he did. He just so happened to be a fabulous medical doctor who kept his mind open and actually tried and succeeded to help me. He did not diagnose me as delusional. He did not give me anti psychotic drugs. He gave me the tools and antibiotics to prove and cure this nasty illness. I have been cured for over two years now!!!!!!!! So remember that psychiatrists can help. They are real medical doctors who can at least tell you that you are not crazy which will make you feel better. And if you are lucky they will try to help you cure your physical ailment as well!!!!! Good luck.
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Post by ctbarb on Nov 4, 2008 21:05:25 GMT -5
Thank you everyone for your kind replies and info...I'll try to answer questions as much as I can. 1. I did inform the ID dr. that the CDC was doing a study with Kaiser on Morgellons. He did not comment. 2. I live in the state where Lyme Disease was first discovered...and our doctors are probably the least responsive to our plight! They test you and forget you. Even though you show symptoms of the disease, a cursory trial of antibiotics is given for a very short period of time, then we are told that that's all that is necessary. 3. No, I have not contacted any of the government health organizations to report DOP dx. They do not answer their phones when you call for info on parasitic infections etc. 4. I think that seeing the shrink first THEN bringing your lawyer to the appointment was excellent! Perhaps that will be the next step.
Again, thank you so very much for all of your kindness and caring...this is indeed a very special forum where people can give and receive info and advice without fear of reprisal or condemnation. You are all very special folks and I thank you sincerely for your help.
Love & Hugs,
ctbarb
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