Fired today by new "doc":says my lyme is mental illness!

Discussion in 'Fibromyalgia Main Forum' started by neen85, Feb 7, 2006.

  1. neen85

    neen85 New Member

    HEy all...I am a long-timer here on the board ,but have been away for a while. I was among the original posters who discovered that their CFS was actually lyme. For my story see my profile...added info on the "CFS SHOCKER" series.

    About 2 months ago I changed doctors to one that was closer and accepted both medicare and medicaid. My other doc took only medicare,so I had alot of out-of-pocket expense,he could not sign transportation referrals for specialists in the cities-all 2 1/2 hrs. away (leaving that uncovered),and most of the time the wait was anywhere from 3 hrs to 6 hrs + the one hour drive.

    The new doctor took me in,ordered a bunch of basic tests and then saw the note where my LLMD wanted a 2nd Leiden factor (clotting) done and a test to see if it was homozygous or hererozygous. He said we will just do it here.

    Well,he acted funny about lyme...dug into the "depression" area. Told him my Mom just passed away suddenly of a blood clot,so it had not been a great holiday season for me.

    They jerked me around about my blood test for over a week,telling me it was "in" but it wasn't "signed off on" or it wasn't off of the computer yet...got about 4 different stories there in one week. They knew my LLMD was waiting for the 2nd test to put me on heparin.

    Today it all came out in the wash. The doctor kept saying "somthing bad must have happened to you". I asked him what he was referring to,and if he was meaning mental illness or trauma,that my life was great when I got ill.

    HE said he would more than likely say that over lyme disease because there are only a few true cases of lyme if it even exists at all.

    I asked him how he explained my Jarish-Herxheimer reaction to the Flagyl that I was given for another problem if there wasn't something going on within my body? I also noted that I was positive on the 41 marker for lyme....for the flagella.....so something that GOd didn't originally put in me is presint,cause it has a tail!

    Secondly I pointed out that I have no vices:don't drink,smoke,gamble,use drugs,overeat,or een eat much sweets for that matter........any one of which you would expect to see with a person with deep seeded psychological problems that he was eluding to,not to mention that I sought out a MSW on my own and had been going for quite some time.

    Not the action of somebody that was trying to "hide" a horrible secret. Not to mention that this MSW is very professional,honest and well-respected and would have gotten me the help I needed if she thought that were the case. What could that idiot say to that?????

    He didn't like that I was seeing a LLMD or sing herbs either. He said that lyme was just a money-maker for some people and ther herbal things were "out of reality". I

    I asked him how long it had been since he read about lyme....I said it was probably the one line about it in the medical text way back when during med school that said if you took a week or two of antibiotics you would be ok.

    In parting,I told him that since he "didn't believe in lyme" that I hope that his wife or children never got it.

    There were alot of other medical things that I said that he could not dispute....Basically I let him know that I knew he was disagreeing about herbal remedies and lyme from lack of knowledge...aka IGNORANCE!

    Then I went to the MSW and had her write him a letter along with my diagnosis,which,as she as stated,she expects to clear up along with my illnes going away. DANEEN
    [This Message was Edited on 02/07/2006]
    [This Message was Edited on 02/07/2006]
  2. PVLady

    PVLady New Member

    Good for you, standing up to this doctor. I cannot believe you had the presence of mind, even though you must have been very angry.

    We all need to stand up for ourselves. You are great!
  3. neen85

    neen85 New Member

    My friend asked why I didn't leave earlier and I told her that I was going to let him know that I kneew he was ignorant medically and was uncomfortable with me knowing more about lyme than he did.....and as for coming apart...the fact that I didn't was great,because it would have just provided him with more "proof"!

    Guess I have been dealing with his type so long that I have learned to be poised about it and attack them with medical tests that they can't debate about.

    The one thing that really burned me was that if he never planned on drawing blood for the clotting test I could have had it done 5 days later at my LLMD in Springfield (4 hrs away). The lab tech came in and said he didn't get enough blood because he had a hard time sticking me.

    That was a total lie,he got me the 1st time and the blood flowed freely......they never intended to do the test in the first place. Most techs will say "I don't have enough" and will stick you again,even if they have to drill around,which he didn't.

    Funny,they had enough blood to do the run-of-the-mill tests they wanted to do!!! Thanks for the support guys!! Daneen
  4. toadgoddess

    toadgoddess New Member

    My first reaction was 'UNBELIEVABLE' but I have had two similar experiences, one just recently.

    I just wrote to you on the other thread where I was looking for you..I couldn't remember the name of the drug and you just said it here-heperin..duh!
    Anyway, at least you didn't waste too much of your precious energy and time with this idiot.

    blessings,
    amy
  5. neen85

    neen85 New Member

    Glad to see some more familiar people on here! Nice to have you back!!!! D
  6. toadgoddess

    toadgoddess New Member

    I just saw you replied over on my post-I think while I was reading yours!
    You are right on with my artwork (the one posted, at least)-about it being a 'dream world'. I actually call that one DREAMSCAPE and have a series of 'dreamscapes'-good job! That's exactly what it is! I don't think I ever posted the title on my profile. I haven't been there for awhile, but I don't think so.

    And yes, it was Heparin. I had to do injections for a brief period the last half of my second pregnancy (17 years ago) with my son, as well, but my mom has done them for years, as she is allergic to coumadin.

    blessings to you, dear.
  7. neen85

    neen85 New Member

    My Mom used the coumadin before the Plavix. The Plavix worked best for her. I am sure I will be on it soon. I am going to call the LLMD tomorrow and tell him that the 2nd clotting test never got done and they never intended to do it and ask how he wants to handle things.

    I think it is bed time for me....guess I am up later than usual because I have had an adrenal surge from the day! Goodnight to Toadgoddess and all! Daneen
  8. neen85

    neen85 New Member

    Well said! You brightened my day! Wish I would have had your little quote to throw at him yesterday! IT would have been icing on the cake! Daneen
  9. kch64

    kch64 New Member


    What an idiot. As toadgoddess said, another STUPID doctor.

    How can he say that you don't have lyme, when you have a positive test.

    I don't think doctors should get paid unless they cure or help a patient.

    There would be a lot of docs out on the street.

    This really makes me angry, to put it nicely.

    I wish you well in finding the right person to help you.

    Kendra
  10. neen85

    neen85 New Member

    Thanks for the replies....

    Jill....I am still seeing Dr. C in Springfield. The repeat clotting test was for him. This new guy just happened to see a note on the first test that a repeat was needed and said he would do it along with all of the other "bogus" new patient tests.

    Unfortunately the mentality around here is about the same. I could go back to the other guy,but he is an hour away and can't write referrals for medicaid (doesn't accept it) and the last time I was there I waited for 6 hrs. for my appt and he was busy packing for his out of town trip during my appointment and didn't even look at the sono of my fibroids,which he knew were causing me unbearable pain. He had let this go for over a year because the naturopath,Dr. Wise,muscle tested me and said there was nothing wrong with my uterus and ovaries.

    The whole trip was a disaster and I felt like I wasted the day to be ignored. I really live in a horrible area for medical care. They are happy to hand out blood pressure medicine and collect the big bucks and take vacations. I will check out the other web site and see if they can come up with anything in my area. I am 2 1/2 hrs away from any major city,so choices are limited. Thanks! I just get tired of dealing with idiots!!

    Kendra,
    My test was only 97 % positive,which tends to happen if you have been ill as long as I have. Clinically I was a picture of lyme....this guy didn't hear anything about that,nor did he want to. He knew nothing about my past at all either,we only had 3 appointments. It was all a snap judgment because he was threatened because I was more educated about lyme than he was. You can't argue with the Herx or the flagella though! Daneen
  11. kch64

    kch64 New Member


    Well, 97% positive is just a fraction away from 100%.

    Common sense would tell anyone who has common sense, that you are infected with Lyme bacteria.

    I wish you well, and sorry you wasted your time with that goon.

    K.
  12. kbak

    kbak Member

    Well this isn't going to make anyone with Lymes any happier. My cousin who is a detective, is concerned about having Lymes and got a pamplet from Mayo's about it because she was thinking of going there, which basically said that many people believe that they have lymes when actually very few do, and that many people that think they have lymes are actually Munchausen ( the make yourself sick to get attention disorder). She was very put off by that.

    K.
  13. minimonkey

    minimonkey New Member

    Y'know, I wish I could say that this is unbelievable, but sadly, it seems to be the norm out there. There is so much prejudice and misinformation about Lyme and other chronic illnesses. Part of what got me researching all this again is that I had two patients end up in my therapy practice after having been diagnosed with "psychosomatic illness" -- turned out we had exactly the same symptoms. Well, I knew for certain that my symptoms are not in *my* head, so I had a pretty hard time believing theirs were, either -- and I told them this. I think that, alone, was really a big part of the therapy -- finding someone who not only believed them, but had been throught the same thing, was a great relief. I owe *them* a lot of thanks for helping get me on the right track with this-- we researched and brainstormed together to find answers.

    I think that *most* (if not perhaps, nearly all!) cases of diangnosed "Munchausen's", psychosomatic disorders, somatoform disorders, etc. are actually undiagnosed organic illnesses. Add to the mix that PTSD can cause physical changes that cause physical illness, and that a lot of organic disorders (like Lyme) can have severe psychiatric manifestations -- really sets the suffers up to be written off as crazy, and dismissed untreated.

    I'm glad your MSW has you covered in this regard. My LLMD asked for some of my cards so that she could refer patients who need therapy to me -- since I understand what they are going through, am educated on the illness, etc. I thought that was just wonderful.
  14. neen85

    neen85 New Member

    Kendra:Yes,common sense is the problem here. And if he knew anything at all about midwestern lyme/lyme he would have known that the longer you have it the less likely you are to test positive.

    K: MAYO/Munchausens....now that REALLY is frightening!!!

    Jill:Thanks for the added input regarding Mayo...I hope everyone will read it and steer clear.

    Mini:Yes,it really is sad to say this happens all too often. I read an essay about the psychiatric manifestations of lyme (lymenet maybe) and was just floored that it can mimic Asperger's,bipolar,ADD,ADHD and many other problems that would easily be overlooked in mental health if one was not educated to this fact.

    I can only imagine the relief of those patients when they found YOU! Daneen
  15. neen85

    neen85 New Member

    Here is another name I remember from a while back! Sweetie,I see that you are going through a rough time yourself....hugs to you....if I didn't know better I would say that most of these jokers were put here for the sole purpose of making us more miserable than we already are (so they don't have to work TOO hard,huh?)

    Yes,I told him to be honest and tell me if the last thing he read about lyme was in his beginning medical text before he started his internships....NO REPLY! I said,I thought so. I guess he figures he can't get something that does not exist....that will only work till ya get it!

    My minister said one day "For those of you that don't believe in hell,you will only be there but a few minutes till ya change your mind." Kind of like lyme,Masters(midwestern lyme)/CFS...you will only be in the depths of all the misery it has to offer but a little while before you are a believer!!

    Hang in there WMU and keep us posted! You are a gem to us,ya know! Daneen
    [This Message was Edited on 02/08/2006]
  16. neen85

    neen85 New Member

    I will post seperately to you in case you don't see this. I went to lymenet and read their "rules". One was that you don't post the first or last name of any doctor...so how does one go about finding a doctor if no posting is allowed?

    I doubt that anyone from my area is even on there,unless doctors volunteer themselves as ones who believe in lyme. I live in a really rural area that consists of a bunch of small towns that are spread out.

    Just wondering???? Thanks! Daneen
  17. kbak

    kbak Member

    Daneen,
    Lyme net wants people to get the name of docs from their local support group. Depending where you are, most states that have high rates of lyme have a support group. Even if your state doesn't have a support group, maybe a neighboring state does.

    Good Luck!
    K.
  18. Jen102

    Jen102 New Member

    It is hard enough having a debilitating illness without being accused of being mentally ill, and of having caused the illness, because you want attention. Who gets positive attention who have these illnesses? I certainly have not! Some people have been very kind, but for the most part, people treat me as if I have the plague.

    I may begin lyme treatment in the next month or two. I have been building my body by getting glutathione iv's, which have helped alot. Otherwise, my doc didn't think I would tolerate the lyme treatment.

    Re Mayo. I hate that place and their arrogant docs. Perhaps they have their place--for something like heart disease or perhaps cancer (I wouldn't go there for those, but some others swear by Mayo). But for anyone with fms, cfs, lymes, etc., they are terrible. What they don't understand, they blame on the patient!

    I went to my gynecologist for some problems I was having and also an annual exam (at about 16 months since the last one). I use a wheelchair, and am obviously sick and fatigued, but I was only seeing him for an annual pelvic exam, and nothing else. He kept harrassing me about going to Mayo to get help with my cfs, fms (I didn't tell him about lyme as I knew he would think me crazy then). He wouldn't let it go. I told him I had 2 great docs, but he put them down and insisted I go to Mayo, even though I said I had zero confidence in them.

    It has bothered me since. Why would I want to go to Mayo and have them undercut my treatment plan, and have them treat me as if I am crazy? If I hadn't gotten my glutathione thru my somewhat alternative D.O.'s and M.D.'s I am certain I would not be alive today. There is no way Mayo would ever have given me this treatment! Nor would they understand that I am very sensitive to meds and don't tolerate some of the things they normally prescribe for these illnesses.

    I talked to my husband about this last night as I have been just unsettled and bothered aobut this since my visit. First, I think it unethical to cut down my docs. Second, he had no idea what my treatment or my problems were--so why try to send me someplace else. I told my husband that Mayo is evil and it is no different than how diabetics were treated some years ago.

    My husband told me a story which really helped me. He said there was a pro baseball pitcher who was a known alcoholic. During one big game, the ball player fell over while pitching. I guess a flask of booze even fell out of his pocket when he fell. It turns out the player wasn't a drinker at all, but suffered from epilepsy. He preferred people think he was an alcoholic than that they know he have the health problem of epilepsy. Alcoholism was forgiveable, but having epilpsy was reason to be locked away in a mental institute.

    That is the way we are. It is easy to be ashamed of our illness because we know how we are perceived by the public, and places like Mayo perpetuate these types of perceptions.

    One other note, and I will get off my soapbox. If our illnesses are mental illnesses rather than physical, why can't Mayo fix us by some new and expensive medicine? There have been great strides in helping people with szisophrenia, depression, etc. Why can't they help us with a pill and fix us if we just think we are physically ill due to some delusion? They can't fix us because we actually are physically sick.

    If you made it this far, thanks for listening. Blessings to you. Jen102
  19. lovethesun

    lovethesun New Member

    I remember seeing you here! There are some doctors out there that just want to rake in the money. if they are required to take classes they take it on something "safe" Thank God they are not all that way!Linda
  20. rockyjs

    rockyjs Member

    Daneen,

    Good to hear from you again! We have a doctor in town who used to be an oncologist till he was diagnosed with ALS and got so bad he couldn't even feed himself. He heard about lyme disease and was diagnosed and treated by a LLMD back east.

    He is almost fully recovered now and opened a clinic here to treat people with lyme. Since so many doctors in the area knew him as a reputatble MD before, they are actually listening to his story and referring patients for a workup who were diagnosed with other neurological conditions.

    A friend of mine who had been diagnosed with Parkinson's for years has fully recovered after lyme treatment. Wish your doctor would get a clue, but I wouldn't count on it. Hope you find someone good. Dr. Crist in Springfield wouldn't be terribly far and he's one of the best. He will do some phone consultations after you've had in-person visits to save driving.

    Jan