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Re: Nancy Klimas, MD--MISDIAGNOSIS
Posted by Mass Lyme on 10/31/08

    I have Lyme too.Dr. Klimas misdiagnosed me too.What a quack.

    Sam Donta diagnosed me with Lyme and other infections.

    Read Pamela Weintraub's book " Cure Unknown Inside The Lyme Epidemic."
    Dr. Bell is another CFS kook who misdiagnosed many children with CFIDS and they really had Lyme.
    MassCFIDS let many of it's sick children down.


    On 10/21/08, Deborah wrote:
    > Many doctors get tunnel vision when they are working on particular illnesses that mainstream medicine fails to or
    > inadequately addresses; it becomes the diagnosis du jour.
    >
    > Not an excuse, just an explanation. I have never met the doctor nor know anything about her.
    >
    > On another note, chronic fatigue is thought to be caused by Epstein-Barr, chemical sensitivities and/or exposures,
    > misdiagnoses and thus unnecessary or improper treatment ( read antibiotics, steroids, etc ), or a varying combination of
    > all three.
    >
    >
    >
    > On 10/19/08, Maria wrote:
    >> Dr. Klimas did not diagnose the intestinal infection or hormone imbalances I had.I would think having several women
    >> patients Dr. Klimas would take a serious approach to understand women and hormones.
    >> I was disappointed in her.PWC have been brainwashed into thinking Dr. Klimas is supposed to be the best doctor at
    >> diagnosing chronic fatigue cases but she is not a thorough or thoughtful doctor. Few blood tests was it. Not worth the
    >> 5 hour drive.
    >>
    >>
    >>
    >>
    >>
    >> On 10/11/08, Surfer Chick wrote:
    >>>
    >>> Those of you who are suffering from unexplained fatigue, I am warning you not to seek the services of Dr. Nancy Klimas
    >>> because of what my experience has been with her. Surfing onto this to this Toxic Law message board, I am shocked by
    >>> what I am reading because I thought maybe this was just something that happened to ME.
    >>> I feel a moral obligation to share my story. People need to know before they travel to see a doctor what the doctor
    >>> is really all about; their ability to detect what your illness is, treat it and their moral obligation to care for you
    >>> and follow up with you.
    >>> My experience, I will first share my health history.
    >>> In 2003, I began having strange symptoms-- strange parathesia, swollen glands and lymph nodes, headache and high WBC.
    >>> By 2004, I had what I can only describe as electricity in my spine and brain, it was as if I was tied up to an
    >>> electrical grid and it was turned on to zap me. It was excrutiatingly painful. At the same time, I had strange joint
    >>> pain, joint pain that jumped from joint to joint and there were days when my feet hurt so bad, all I could do was
    >>> crawl. In addition to these symptoms, I have profuse sweating and hair loss along with abdomial pain and pain in my
    >>> lungs when I would breathe in deep and little by little fatigue along with a sick feeling came over me. At first it
    >>> was just once every few weeks, then it came more and more frequent until it just grabbed me and would not let go.
    >>> I saw a doctor who was of no help, but he gave me any pain medicine, anti anxiety or narcotic I asked for.
    >>> I had frequent trips to the ER during 04-06 where it was noted I had some type of "infection" I would also have horrid
    >>> bouts of vomiting and the runs.
    >>> I went to a few doctors who checked me for RA, Lupus but I didn't fit into these definitions of illness (they also
    >>> checked me for the worthless wastebasket diagnosis of "fibro" but I was not tender at all. No tender points anywhere.
    >>> My suffering continued and in April o7, I saw a specialist in the area of taste/smell because my taste and smell had
    >>> been gone for several months and now I had a feeling as if bugs were chewing at my flesh from inside, on my face,
    >>> neck, back, arms, chest, stomach, arms and legs and then swelling in my elbows began .
    >>> He and his junior resident had asked me questions for about 10 minuets and the attending told the resident that it
    >>> sounded as if I have Lyme Disease. I had not really heard of this before. He told me that I needed to find a doctor
    >>> who specializes in this because it was outside of his speciality. I followed his advice and two months later consulted
    >>> with a Lyme doctor. When I saw this doctor and went over my lab work and history, he said he thought I had Lyme
    >>> Disease and an infection Bartonella. He urged me to be tested for these infections right away and meanwhile gave me an
    >>> Rx for doxycycline.
    >>> Meanwhile, I did take the antibiotics for a short while but I discontinued them after I saw Dr. Klimas.
    >>> I consulted with Dr. Klimas as I wanted a full evaluation of my condition. I trusted that she would be qualified to
    >>> diagnose my situation, and besides I made the assumption that since she's well reknowned I should take her advice over
    >>> a doctor who is only known locally. My mistake.
    >>> When I saw Dr. Klimas in 07, my impression of her was favorable. She was very nice and laid back. Though I was
    >>> surprised that she didn't do a full exam and only ordered a few blood tests, I thought she had my back. I told her and
    >>> her assistant who was also very nice my entire history, including my visit to the Lyme doctor. Dr. Klimas was very
    >>> quick to tell me I didn't have Lyme and that most likely I have "CFIDS" but that I would get well in time. She told me
    >>> she could and would help me. I did feel at the time she wanted to help me. I recall telling my friends and father
    >>> about my appointment with her, that she made me feel safe and comfortable and that I would be OK in time. My father
    >>> was so pleased to hear of my visit that he thought it would be best if I relocated to Miami so I could see Dr. Klimas
    >>> regularly.My father wanted to purchase a condo in South Florida so I figured this sounded like a great idea.
    >>> I also told Dr. Klimas during my appointment that I would see her as often as what it takes to get well.
    >>> I left Miami feeling hopeful and with an Rx to get a sleep study, and to be checked for toxoplasmosis and mercury.I
    >>> had these tests done. The agreement I had with Dr. Klimas is that she would call me after the sleep study and the two
    >>> blood tests came back. She also ran an immune panel when I saw her.
    >>>
    >>> Meanwhile, I followed up with the Lyme doctor. He asked how the antibiotics went. I told him after about two weeks
    >>> first trying them, they made me feel like hell but that I discontinued them because I got a CFIDS diagnosis at
    >>> University of Miami. He told me he really thinks I have Lyme Disease so I should be tested. I got tested that day. Two
    >>> weeks later, my Western Blot came back CDC positive. I didn't know what to do at this time. I had finished the tests
    >>> Dr. Klimas had ordered and I was still waiting to hear back from her. I decided to get yet another opinion while I
    >>> waited to hear from Dr. Klimas. I found a rheumatologist on my insurance list. I got a quick appointment with the
    >>> Internal medicine doctor who worked with the rheumatologist. The Internist strongly felt I had Lyme but wanted to
    >>> retest and run other co infection tests along with other tests too. My tests came back positive for Lyme, Bartonella
    >>> and other infections. My ANA was also positive speckled.
    >>> I saw the rheumatologist and she too diagnosed Lyme disease.
    >>> Meanwhile, I got a call from Dr. Klimas but missed it so it went to my voice mail. She promised to call back that next
    >>> Tueday for a phone consult and told me that my blood work is back (that she had ordered) and that she has "A TREATMENT
    >>> PLAN" for me.
    >>> While I waited for her phone call, I had asked the lab to send Dr. Klimas all my blood work ordered by the other
    >>> doctors, plus I faxed her what copies I had available.
    >>> Tuesday came, no call. I assumed Dr. Klimas was busy. I gave it a week and then left a couple of messages. I heard
    >>> nothing.I really did not know what to do, I was really counting on Dr. Klimas. Leaving messages went on for two
    >>> months. Finally, a doctor from the University of Miami called me, a Dr. Lina Garcia. She identified herself as working
    >>> with Dr. Klimas and bluntly but politely told me "We don't treat Lyme Disease here" and suggested that I seek help
    >>> elsewhere and stop calling. I asked Dr. Garcia about my follow up, the results from the sleep study, and my TREATMENT
    >>> PLAN that Dr. Klimas had mentioned in my voice mail. Dr. Garcia stated "No treatment plan" and that I needed to go
    >>> somewhere else for help. Again, I asked about my follow up, that I flew out from California to see Dr. Klimas, etc.
    >>> All Dr Garcia had offered to do is comment about my hormone tests results (ordered from another doctor)looked low and
    >>> that she would ask Dr. Klimas to write a letter so I could take it to a gynecologist or endocrinologist. Dr. Garcia
    >>> also said she would try to get me a follow up appointment since I came across the coutry to see Dr. K. She left me her
    >>> e-mail address. I emailed her to ask about the follow up visit, a request for my records and the note. I got a reply
    >>> stating the note was in the mail and that I would get a follow up appointment.
    >>> I never got the note, never got the follow up. I called a total of 24 times!
    >>> If you want a doctor who is this unprofessional, go see Dr. Klimas.
    >>> My father thinks it's a blessing in disguise that she shirked her responsibility to care for me because her brand of
    >>> care is half assed. She never tested me for Lyme and co infections even though two other doctors suspected this is
    >>> what I had. She was quick to deliver her CFIDS diagnosis and quick to come up with a "TREATMENT PLAN" with only
    >>> running a handful of tests. She saw those test results and could not be professional and get back to me. If she didn't
    >>> want to treat the Lyme, I understand but she owed me the courtesy of follow up. Just imagine she had a treatment plan
    >>> which was most likely antidepressants for a person infected with bacteria.
    >>> I recall her words during my appointment about not having Lyme.
    >>> My experience begs the question, how many of her other patients came to her not tested for Lyme or God knows what but
    >>> gets the "CFIDS" diagnosis.
    >>> Thanks to this experience, my Lyme is even "later" treated. Going off the antibiotics, then trying to get back on was
    >>> difficult so I gave up.I have a doctor who cares about me now. Maybe I will get well someday.
    >>> I hope you can understand my disconnected post. I know it's a mess but I want to type it and get this out of my system
    >>> and not look back.
    >>> Please be careful what doctor you put your trust in. I never thought Dr. Klimas would just turn her back on me. I
    >>> thought she was so nice.
    >>>
    >>>
    >>>
    >>>
    >>>
    >>>
    >>> On 8/15/08, BE wrote:
    >>>> This is just typical Klimas.
    >>>>
    >>>> On 7/28/08, Former Klimas Patient wrote:
    >>>>> I call myself "Former Klimas Patient" but that's not fully accurate as she never did anything a good doctor would
    >>>>> do besides run a couple of her "CFS" type blood tests. You probably know the drill, the NK cells, HHV6 and EBV.
    >>>>> Never did she take the time to find out why I was so sick but that didn't stop her from giving me a CFS diagnosis
    >>>>> with no answers.I thought going to a university hospital they would pull out all the stops to find out the cause
    >>>>> of the fatigue but that didn't happen.
    >>>>>
    >>>>> Don't waste your time, energy or hard earned money traveling to see Dr. Klimas.I was snowed at first thinking she
    >>>>> was a caring woman doctor but really she cares about only her medical politics and government handouts. I had her
    >>>>> all wrong and I paid for it with my health declining thanks to her. Did she diagnose me correctly? No. When I
    >>>>> called her to leave information about the real cause of my "chronic fatigue" did she offer to help? Hell No! I
    >>>>> didn't get a phone call back from her. I must of left about 10 messages at least some on voice mail others with
    >>>>> the flighty secretary of hers.They never answer the phone.A very unprofessional medical practice.
    >>>>> Johnnie
    >>>>>
    >>>>>
    >>>>>
    >>>>>
    >>>>>
    >>>>> On 7/21/08, Seattle wrote:
    >>>>>> I saw her and what a mistake it was! Half-baked medical care and no in depth diagnostic tests, only a few blood
    >>>>>> tests.Very hard to reach by phone and those who work for her are unprofessional, she never returns calls. She
    >>>>>> missed what was the causative factor involved in my fatigue.I have a good doctor now that is not involved in CFS
    >>>>>> and that racket.
    >>>>>>
    >>>>>>
    >>>>>>
    >>>>>>
    >>>>>>
    >>>>>> On 7/16/08, Bruce wrote:
    >>>>>>> Has anyone seen Dr. Nancy Klimas at the University of Miami for chronic fatigue? Please write of your
    >>>>>>> experience.
    >>>>>>>
    >>>>>>>
    >>>>>>>
    >>>>>>>
    >>>>>>>
    >>>>>>>
    >>>>>>>
    >>>>>>>
    >>>>>>>
    >>>>>>> On 7/13/08, S wrote:
    >>>>>>>> Robert,
    >>>>>>>> You do make a good point but mold allergies are real and mainstream medicine knows that too. Lyme (not
    >>>>>>>> Lymes) is real but it's not well understood, though your point is well taken there are quacks out there who
    >>>>>>>> do diagnose such conditions with little proof and sell patients all this alternative garbage and promise
    >>>>>>>> them they will get better.
    >>>>>>>> "CFS", is a vague diagnosis doctors give when they lack the imagination to know what to do for these
    >>>>>>>> patients. Many times, it's hormonal, bacterial or viral but everyone is lumped together but Fibromyalgia is
    >>>>>>>> the champion of all quack conditions, just throw in the kitchen sink and this whopper of a so-called disease
    >>>>>>>> describes it all. What is unfortunate is those stuck with this pitiful diagnosis which is maninly a hormonal
    >>>>>>>> problem primarily in women with declining hormones and hypothyroid individuals. Too little is done about
    >>>>>>>> women's hormonal issues, but you're right, it attracts quack-pot fringe doctors and so-called mainstream
    >>>>>>>> doctors at universities who are on the payroll from big pharma.If you read the post above, the CFS doctor
    >>>>>>>> at Georgetown sounds like a quack too, just a different variety then those in the alternative world.
    >>>>>>>> I do want to add one thing worth mentioning, "mainstream" is not always correct. If you do your homework on
    >>>>>>>> history of medicine you will find what was once considered a "stress" issue with a psychological base,
    >>>>>>>> turned out to be real illnesses--such as RA, MS,bacterial ulcers--H-pylori. The doctor who discovered H-
    >>>>>>>> Pylori (Dr. Barry Marshall) was laughed at for decades by his peers, then he won the peace prize.
    >>>>>>>> Mainstream can be too ridgid and dogmatic in their aproach to understanding unknown disease--but quacks know
    >>>>>>>> this too and take advantage of people--THAT is the problem. When mainstream can't explain things, they blame
    >>>>>>>> psychology--that is a problem too.
    >>>>>>>> The best we can do is find open minded doctors who truly want to help others and not take advantage of the
    >>>>>>>> ill, or practice deceptive medicine.
    >>>>>>>> I said what's on my mind but I do think your points are valid.
    >>>>>>>>
    >>>>>>>>
    >>>>>>>>
    >>>>>>>>
    >>>>>>>>
    >>>>>>>> On 7/08/08, Robert Christ wrote:
    >>>>>>>>> I recommend that people google "how to spot a quack" One thing quacks always gravitate towards is
    >>>>>>>> conditions
    >>>>>>>>> that conventional medicine doesn't address like mold related illness, lymes, cfs, mcs, etc. Just because
    >>>>>>>>> they believe your condition is real doesn't qualify them to treat it. Many push vitimans and tox screens,
    >>>>>>>>> expensive blood test's that are irrelevant but boast their bill and give the patient the impression the dr
    >>>>>>>>> knows what he's doing. Many will sell you phony cures that supposedly "boast your immune system" or "remove
    >>>>>>>>> toxins" Shoemaker is one of the few that actually prescribes conventional medicine for an unconventional
    >>>>>>>>> purpose. I am not familer with the colosteral medication he prescribes but dubious of the claims he makes
    >>>>>>>> as
    >>>>>>>>> far as it's removing toxins, and especially dubious of the VCS test to measure its progress. Anyone who
    >>>>>>>>> knows different please correct me but I don't think the purpose he prescribes it for is recommended by
    >>>>>>>>> conventional or main stream MD's.
    >>>>>>>>>
    >>>>>>>>> ACMT has an article that refutes the mycotoxin connection to illness that shoemaker and others have been
    >>>>>>>>> touting.
    >>>>>>>>> http://www.acmt.net/cgi/page.cgi?aid=12&_id=52&zine=show
    >>>>>>>>> Particularly read the passage where they say that we consume way more mycotoxins in the food we eat by
    >>>>>>>>> orders of magnitudes than inhaled even in some of the worst mold contaminated buildings. So I am not
    >>>>>>>>> attacking the person, just his practices, and have evidence to back it up via the acmt document. Some will
    >>>>>>>>> say the science is payed for and bogus but this is not the MO of "paid for" science. They usually use straw
    >>>>>>>>> man arguments, or smoke and mirror tactics, or Plausible deniability like the ACOEM position paper which I
    >>>>>>>>> believe to be fairly accurate except where they claim MRI doesn't exist in the context of CFS which is
    >>>>>>>> flat
    >>>>>>>>> out wrong.
    >>>>>>>>> Needless to say very damaging to those that suffer from mold related illness.
    >>>>>>>>> http://www.acoem.org/guidelines.aspx?id=850
    >>>>>>>>>
    >>>>>>>>> ACMT on the other hand made a direct statement about a specific item, "mycotoxins" that could be
    >>>>>>>>> challenged if what they are saying were not true. But nobody has.
    >>>>>>>>>
    >>>>>>>>> I believe mold related illness is much more complicated than the quacks make it out to be. I believe they
    >>>>>>>>> are cashing in on our misery and the professional witness fees they get. I have suffered from it for 12
    >>>>>>>>> years and believe the only treatment that is effective is mold avoidance. The best bet for a sufferer
    >>>>>>>>> barring extreme measures is to find a relatively new house to live in with no history of water damage. You
    >>>>>>>>> don't need to pay Dr's like showmaker tens of thousands of dollars to come to this simple conclusion. Just
    >>>>>>>>> skip the middle man and save your money for the higher quality housing you need to control your mold
    >>>>>>>> related
    >>>>>>>>> symptoms.
    >>>>>>>>>
    >>>>>>>>> Those that believe they suffer from lymes, MCS, CFS, etc. I would implore to make close observation to
    >>>>>>>>> their symptoms and their dwellings specifically to the degree of mold in them. Don't spend money on
    >>>>>>>>> expensive testing or remediation, your better to save it and put it towards higher quality new housing.
    >>>>>>>> If
    >>>>>>>>> you can find a friend or relative willing to let you stay with them (with a new house with no history of
    >>>>>>>>> leaks) for a month or two do this. Otherwise take the money you would spend on remediation and move into a
    >>>>>>>>> new clean house or apt. for a month or two, if the difference in your health is undeniably better "MOVE"
    >>>>>>>>> Craigslist.com has people with brand new homes looking to rent a room out, you can get into one of these
    >>>>>>>> for
    >>>>>>>>> about 600 a month. Less than one visit to shoemaker or any of the other ahem "alternative medicine
    >>>>>>>>> practitioners" and you will learn far more about your condition and how to treat it.
    >>>>>>>>>
    >>>>>>>>> Robert Christ
    >>>>>>>>>
    >>>>>>>>>
    >>>>>>>>>
    >>>>>>>>>
    >>>>>>>>> On 6/27/08, mgfs wrote:
    >>>>>>>>>> First of all I would like to say I hope everyone suffering on this thread finds the answers and treatment
    >>>>>>>>> they need to feel well and whole
    >>>>>>>>>> again. After spending quite a bit of time with RS recently for a non clinical reason I would like to give
    >>>>>>>>> my thoughts on the man. He is one
    >>>>>>>>>> of the most immature egotistical self centered people I have ever met. He is a sensationalist capitalizing
    >>>>>>>>> on the pain and ignorance of
    >>>>>>>>>> others. And although I'm not a mental health pro I would lay money that he has borderline personality
    >>>>>>>>> disorder. He is about one thing
    >>>>>>>>>> and one thing only...lining the pockets of RS and pontificating the wonders of all things RS. All you have
    >>>>>>>>> to do is walk in his waiting room
    >>>>>>>>>> and observe "The Shrine" dedicated to the glory of RS to know there is something not right with this man.
    >>>>>>>>> My favorite part of "The Shrine"
    >>>>>>>>>> is an ad he has for a diet he made up that says something like "My way works, does yours?". Now what makes
    >>>>>>>>> this so funny is he is a very
    >>>>>>>>>> overweight man. Folks, use your head when it comes to this guy. if it looks like and smells like, it
    >>>>>>>>> probably is.
    >>>>>>>>>>


     
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