Help.. Need Diagnose...?????

Discussion in 'Fibromyalgia Main Forum' started by jamie15, Jan 31, 2010.

  1. jamie15

    jamie15 New Member

    I need your help. I have been to the following specialists and none could diagnose me with anything:

    Endocrine Doc
    Rheum. Arthritis Doc
    Neuro Doc
    Gastro Doc - did diagnose me with heartburn and IBS

    I have been going to a group of PCPs and Nurse Practioners and you never get to see the doc twice in case you have an appointment... after all these tests were run I made an appt with my one of the doctors at the group who is a PCP and he told me that I had covered all my bases and it could be chronic fatigue which is what I thought it was since I have been having symptoms for more than a year now and he told me to take a anti-dreppsant which my physciocist had already prescribed three years ago but I went ahead and uped the dose as he suggested and he told me to come back in 4 weeks for a follow up appt so I did so and asked him if he could please just give me a diagnose due to the constant fatigue I suffer and he ignored the question and told me to up my anti-depressants even more much to my dismay. I told him that I wasn't depressed that I as tired achey and could barely get out of bed and he advised me that he couldn't diagnose chronic fatigue syndrome because my white blood count is fine. Now in the the past he told me there wasn't any test for this illness.

    Needless to say I am looking for a new PCP, my neur doc and gastro docs are awesome but I need someone to diagnose me. I am a supervisor at a company and my bigget fear is getting sicker and not being able to work. I have already been off work for a week due to fatigue.

    I have a Voluntary STD and LTD plan that I have been paying for over 4 years and my PCP told me that if I got so fatigued that I couldn't get out of bed that he could not write me out for disability because I haven't had any abnormal blood tests, etc...

    Can someone please let me know the facts on this... I have a 4 year old and a 16 old and we are dependent on my salary.

    Physically I am having a really hard time and I am so scared I am going to be without any income.

    Your input would be greatly appreciated...

    Thank you!!!!

  2. fight4acure

    fight4acure Member

    Hi! There is a list of doctors at the top of this site that have been helpful for others. Please read that list, Hon!

    Also, some females with CFS/FMS have had better luck with some female doctors... but then again, some haven't, like myself. Right now I'm having to get a new doctor, because mine is doing what yours is doing, NOT LISTENING ANYMORE! Unfortunately, we need to call around and find out from the receptionist, as they have all of the good gossip, trust me on this one, and will tell you who is best for dealing with a possible CFS diagnosis. If they ask that you get a referal, all you have to do is call your past doctor and tell him you're getting a second opinion, (as they're use to that nowadays), and then give him the name of the doc you make a new appt with, and that will be your referal, as they can fax it too, and if they don't have the fax number, it is good to get that from the receptionist when you make the new appt, or prior to making the appt, as some won't schedule you until you get the referal.

    Let me know how it goes!

    Fight :)
  3. Nanie46

    Nanie46 Moderator


    Sorry you are getting no answers.

    One diagnosis to consider is a chronic Borrelia burgdorferi infection (also known as Lyme disease).

    Most Dr's do not know how to recognize and diagnose this infection, especially when it is chronic. The biggest mistake Dr's make is ruling out Lyme with just a negative lab test. Lyme is a clinical diagnosis and should never be ruled out with just a negative test....testing is poor for this bacteria.

    It happened to me and many others on this board.

    Here is some info you can read:

    In the above paper, there is a comprehensive symptom list on pages 9-11. Different people can have different symptoms, but fatigue, pain and cognitive problems are the most common.

    Check out the coinfection info on pages 22-27 also....Many people with a chronic lyme infeciton also have bartonella, babesia, ehrlcihia, etc.

    Here's more info....

    I hope you get some real answers and recover.
  4. jamie15

    jamie15 New Member

    I have been to endocron. like 3 times now... one time my TSH level was a little low so they tested in a couple of months and it was fine but I don't think I have ever had my Vit D level checked.

    What does the Vit D level show???

    Thank you sooo much for your response!!!!!!!
  5. jamie15

    jamie15 New Member

    I am sorry to hear you are in the same boat. I am shopping for a new PCP but I tell you what my energy level is below zero. I sure hope someone listens to me and sees all the test I have had run!

    Good luck to you!

  6. jamie15

    jamie15 New Member

    Hey sweetie.

    Thanks for your encouraging response. I am shopping for a new PCP.

    My doc put me on Lexapro and I take it at night but it isn't helping my energy at all and my headaches are the worst.

    Oh, I am still married to the same man - we have been married for 18 years but we are depentent on my salary to pay the bills. I am having a hard time working and making through the day right now. If I go part time then I will loss my disablity coverage so I hate to do that.

    I did try Wellbutrin and it didn't help me much.

    Thank you for your response, I need all the encouragement I can get.

    Take care.

  7. jamie15

    jamie15 New Member

    My doctor told me he ran a test for Lyme Disease and it came back negative. Girl I have been tested for everything and I am at my wits end.

    Thanks for your response... I am gonna keep diggin!

  8. mbofov

    mbofov Active Member

    Have any of your doctors checked the following:

    B12 levels
    Adrenal gland functioning

    I know you said they checked your TSH and it was a little low at one time, but that's not the whole story at all. You can check out for more info (specifically,

    Unfortunately, we really have to be our own doctors for much of this.

    Low B12 levels can cause fatigue, weak adrenals can. A good test for this is the Adrenal Stress Index Test, can be ordered by any doctor or naturopath.

    You might have food allergies causing fatigue, particularly since you have IBS. There are so many things that should be checked and yours doctors aren't doing it. You might have chronic fatigue syndrome, but you might not, and you're much better off if you don't because there are more things you can do to improve your health.

    You really need another doctor who is knowledgable about nutrition (is that an oxymoron?). You might try a naturopath, they should look at all these things.

    Also, your heartburn might paradoxically enough be a sign of low stomach acid. If you have low stomach acid, you won't digest your food properly, again, another possible source of fatigue. Again, a good doctor or naturopath should check this out.

    Naturopaths generally are not covered by insurance but it really might be worth it to try to get to the bottom of your fatigue.

  9. Nanie46

    Nanie46 Moderator

    The important thing to remember is that Lyme testing is very poor and inaccurate.

    There is a tick borne disease specialty lab in CA called Igenex where Lyme western blots should be done.

    My lyme tests were officially CDC negative and so were many other Lyme patient's tests. If you go to the Medical questions board on you would find MANY lyme patient's with only negative tests. Lyme is a clinical diagnosis...means it is based on history and symptoms.

    I did however, have some important clues on my Igenex western blot...some lyme specific bands that did not show up on the other labs' western blot because the other labs do not even test for all the important bands that can indicate lyme.

    Also, the CDC has made the criteria for what is considered a positive result so high that most people do not meet those criteria and are called negative....leaving many people undiagnosed.

    If your Dr ruled out lyme based on a negative test only, he is not Lyme literate.

    I would insist that your Dr order test #188 and #189 western blot IgG and IgM through Igenex.
    You must prepay (was $200, not sure if it still is) and you can send it in to insurance to see if they reimburse.

    You can go to their website or call Igenex and order a free test kit with a prepaid fedex label.

    Then get a copy of your results and compare the band results to the western blot info on page 7 in Dr Burrascano's paper "Advanced Topics in Lyme disease" ...the link is in my first reply on this thread.

    Go down the symptom list in that same paper, on pages 9-11 and see how many symptoms you have.

    Also compare the band results to Dr C's western blot info here....

    There is story after story of people on where people remained undiagnosed for many years due to uninformed Dr's who never properly knew how to rule lyme in or out....they relied solely on a lab test.

    So sad that so many people suffer needlessly for so long.

  10. fight4acure

    fight4acure Member

    The Lyme disease tests they use are not all that accurate. Even the ones that are more accurate aren't that accurate. I know that is discouraging to hear, but the scientists haven't worked too much on the borrelli thingy to find out a more accurate test. I wish they'd get on that like they are the XMRV, and finally might I add!

    Fight :)