Still Seeking Diagnosis After Two Years

Discussion in 'Fibromyalgia Main Forum' started by chaps, Jul 12, 2008.

  1. chaps

    chaps New Member

    OK, so I sent my blood out to IGENEX labs in Ca. for their expanded Western Blot and various other tests, the basic $475 package. The test results went back to my primary care physician, who said that there was only one “bar” that was positive, the rest were negative. He went on to say that in order for the results to be considered seriously as “positive,” there would have to be three or more “bars” that were positive.

    First of all, that was the first time I had heard the term “bars” used. I’ve heard “bands” mentioned but not “bars.”

    Aside from that, I don’t know what to make of this. I am concerned that my primary care physician doesn’t know enough about interpreting the Lyme test results in order for me to rely on his interpretation. Should I have him forward the test results on to someone else who is more qualified to interpret them? Suggestions?

    There’s a place here in central FL called Central Florida Research that does a different kind of Lyme test which doesn’t look for antibodies or anything in the blood that indicates that your body is fighting Lyme, it instead looks to find the actual Lyme bacteria, the spirochete, the Borrelia Burgdorferi. I have the kit and will send them my blood next week because I still think this could be Lyme disease. I base this on the fact that I’ve been fighting symptoms for two years, and only recently have these arthritis-like joint symptoms come about.

    My symptoms over the course of the two years have included:

    - Onset with Flu-like symptoms (chills, dizziness, diarrhea)
    - Occasional Sore Throat
    - Headaches, Stiff Neck
    - Gastrointestinal Symptoms (had colonoscopy, no trouble found)
    - General Malaise
    - Chronic Fatigue
    - Muscle Pain (abdominal, lower back, extending up toward ribs and lats on the left side)
    - Swollen Lymph Glands (various places, come and go without explicable reasons)
    - Heart Palpitations
    - Numbness, shakiness
    - Tingling of the fingers and sometimes toes
    - Facial twitching on the chin (nerve jumping)
    - Mild achy ear
    - Mild Visual Symptoms, Blurriness, Occasional Color Spots
    - And now for the past 3 weeks, I've had the joint pain in the hips, shoulders, knees, and a little bit in the jaw, elbows, wrists, and in one of my fingers.

    All of the above (according to what I’ve read) are classic Lyme symptoms.

    I know it’s possible that it could be MS or Rheumatoid Arthritis, but if that were the case, wouldn’t they have already been diagnosed by the rheumatologist and the neurologist that I saw at the Cleveland Clinic last fall? A different neurologist ruled out MS with an MRI in January of ’07.

    I was not having the joint pain symptoms last fall when I saw the rheumatologist, but if it were arthritis, would it have taken two years for the joint pain to show up? He did a ton of bloodwork on me. Would I have had all of those other neurological symptoms if it was arthritis?

    The longer this goes on, the more frustrated and confused I am about it and I can’t seem to get any answers from the damned doctors.

    I really don’t know what to do next. See a rheumatologist again? Get a spinal tap done? I tried calling for an appointment yesterday, they can’t even get me in there until September.


    [This Message was Edited on 07/12/2008]
    [This Message was Edited on 07/12/2008]
    [This Message was Edited on 07/12/2008]
    [This Message was Edited on 07/12/2008]
  2. CKater

    CKater New Member

    No wonder your frustrated. You've been to a rheumatologist and he has failed to diagnose you with Lymes disease? I find that a little shocking, and you have been to some pretty high powered places; i.e Cleveland Clinc? Something is definitely not right, but it is baffling that these doctors are not doing anything for you? Lymes disease is difficult to diagnose, and it does not present itself all at once. My ex-husband suffered for many years before being diagnosed, and to this day suffers residuals from it. I think you need to find a different rhuematologist definately and by all means if he/she doesn't listen keep trying you are sick, and I am by no means an expert, but it does point to something like Lymes, but then there are so many symptoms with that and other diseases/disorders. If there is a better clinic please go there. I feel bad for you, I sure don't like my ex, but I watched him suffer needlessly with Lymes for a long time and it was awful. Don't give up hope although I know it is hard when you're sick. Good luck dear.
  3. chaps

    chaps New Member

    The rheumy at the Cleveland Clinic DID ask me if I had jaw pain or joint pain. This was back in December of '07 (I know I said last fall, but it was actually December that I saw the rheumy. I saw 11 specialists at Cleveland Clinic including starting in October). Up until about three weeks ago, I had not yet experienced any joint pain, so that's what I told him at the time. This may be why he ruled out Lyme disease. His plethora of blood tests probably ruled out rheumatoid arthritis. So now I'm still left here holding the bag wondering WTF.

    Oh, and by the way, when I feel that abdominal pain on the left side and left lower back radiating up, it gets me wondering if it's muscular pain or the disease attacking my liver (left front) possibly the spleen, and my left kidney in the back.
    [This Message was Edited on 07/12/2008]
  4. marti_zavala

    marti_zavala Member

    Hang in there, keep looking. This illness is based on exclusion so you are right to keep fighting.

    I understand that Lyme can be diagnosed based on clinical findings. I think there is controversy. But we can be atypical so keep searching.

    Regarding the abdominal pain. Liver in on the right - towards the front under rib cage. Also, gall bladder is above that. So, if you have having liver pain, it is probably not liver damage, per se, but gallstones and stones in your liver. I don't believe the liver has those types of nerve endings so the damage is silent but gallstones in gall bladder and in liver are NOT silent.

    Pain on the left side under the bottom ribs is usually the pancreas or a little higher is the spleen.

    The pancreas can hurt if it is inflammed - pancreatitis. the spleen can hurt also if it inflammed but it is harder to get to that.

    If you reach under your bottoms ribs on left, you are touching your pancreas - reaching under bottom ribs on right it is your liver.

    Placing your hand on your rib cage below left breast and above your waist is your spleen. Same on the right side is your gall bladder.

    Let me know if you want more info on chronic pancreatitis.
  5. Timaca

    Timaca New Member

    Ask for a copy of the lyme tests.

    Also get tested for HHV-6, EBV and Cpn (Chlamydia Pneumonia)

    See: and for more info. The symptoms you posted can be caused by many pathogens...not just lyme.

  6. chaps

    chaps New Member

    Thanks Marti. My pain is lower than that and a little more toward the side near the obliques. Based on your descriptions, it doesn't sound like it's the internal organs giving me the aches, maybe it is the muscles. The pain that I mentioned that was close to the ribs is in the back. It radiates up from the lower back to the ribs on the side and even sometimes to the lats. I think that's muscular.

    "Ask for a copy of the lyme tests."

    Yes, but who would be a good and reliable authority to interpret them for me?


    Jeepers creepers. I've never heard any of the medical doctors mention either of these things. What kinds of specialists are capable of diagnosing those diseases? Can those diseases be causing the arthritis/joint pain that I'm now experiencing?

    In one of my blood tests a couple of years ago, the doctor said that some antibodies in the EBV panel were elevated that would be more indicative of a chronic condition (as opposed to acute) but he blew that off saying you could have been in contact with mono many years ago, perhaps even as a young child, and this could cause the EBV antibodies to be elevated ever since. Basically he said "none of that proves anything." It makes me wonder why it was tested in the first place.

    If the results of the Lyme bacteria (Borrelia Burgdorferi)test come back negative, I am lost as to what to do next. Go to a rheumatologist again? Go to the FFC? I'm lost.
  7. tangie

    tangie New Member

    Hi. I went for about 3yrs. fighting back and forth with my doctor b4 I got anywhere. I didnt even get my diagnosis from my doctor. I had to go through the study b4 my dr. would even Consider giving me the diagnosis of CFS. Keep searching, DON'T give up! Try to find a study or clinical trial that will definitely give you the diagnosis or give you alternative places to go and find help. Keep your head up and dont give up. Hope you feel better soon.
  8. marti_zavala

    marti_zavala Member

    Here is a test to see if it is muscular -

    Some muscular pains are due to essentially lactic acid which is removed by activity. So try this -

    1 tsp of baking soda in 8 oz water on an empty stomach. The first 1/2 tsp neutralized the stomach acid and the 2nd tsp neutralizes the lactic acid in muscles. Do this on an empty stomach.

    Take 400 mg of magnesium, 1200mg Malic Acid, some calcium. These help the muscles. I can't live without my magnesium and malic acid.

    Do this for 3 nights and see how those muscles feel on the fourth day. If it is relieved then it might be just lactic acid - so gentle stretching to move the acid out plus the baking soda, mag. and malic acid may be what you would need to do for a while.

    OR it could be your intestines are inflammed - the test for this is to go on a bland diet for a few days - no chemicals, just rice and chicken or chicken broth. Some NSAIDs to see if the inflammation goes down.

    Just some thoughts to help you think it through.

    Joint pains can be caused by viral or bacterial pathogens. It is also a part of the CFS and FMS syndromes without the pathogens. If so, these joint pains move around while the joint pains from viral or bacterial are always there.

    There are various threads to search for other possible diagnoses. The list is overwhelming so don't be concerned, just take it one step at a time.

    There are two schools of thought -the first being test for every pathogen, parasite that you can. The other being - correct the underlying body structures - methylation, detoxification, Kreb's cycle and let the body heal itself.

    I sort of stand in the middle having hit boths ends of the pendulum in the past.

    The thing about testing for a pathogen is that it is just a snapshot. Let's say you test negative for Cpn today. That doesn't mean you may not catch it a year from now when you have been exposed for some reason.

    Have you tried a functional medicine doctor - they are more open to testing for these pathogens as are infectious diseases specialist. Rheumys are not usually open but there are exceptions. Getting tested is not easy for most of us - lots of politics and misinformed docs.

    The goal for identifying the pathogens and treating them is that hopefully THAT IS your diagnosis. If you recover then you did not trigger over to CFS or FMS.

  9. bunnyfluff

    bunnyfluff Member

    For what it's worth, even the CDC says that lyme is supposed to be a clinical Dx, then can be supported with the blood tests.

    What I'm saying is, if you have so many symptoms, you really may not feel the need for the + test. Also depends on the band (s) you got a + on. there are many reasons a test can come in neg., and there have been good posts on this board about that.

    I tested neg for lyme the first time, but finally got 2 positive tests later, about a year later. I was sick about 10 yrs before anyone even suggested Lyme, so I got way sicker than I needed to, for sure.

    I have also now tested + for mycoplasma fermentans. EBV was abig problem for me for quite awhile.

    Good luck, don't give up!

  10. springrose22

    springrose22 New Member

    Always get copies of all of your tests for yourself at home. Then, you can do some research on your own or ask questions here, and you may find someone to interpret the results. If you have copies at home then you don't have to wait before getting them. I always get copies of my tests, and even found at times that I have received the results of other patients! One time my Dr. was trying to interpret a test to me, and she told me she didn't think the results meant anything. After I brought a copy home I found someone else's name on it.

    Sounds a lot like Lyme. Hope you get some answers and treatment soon. Take care. Marie

  11. chaps

    chaps New Member

    Thanks for all of your caring responses and information.

    Marti: <<Have you tried a functional medicine doctor>>

    I have never heard of this kind of doctor and would not know where to find one. If I do a local internet search on "Physicians, Functional Medicine," will I get any hits? In other words, is that the common title to which these kinds of specialists are referred, or are they somtimes called something else?

    What about the Fibro and Fatigue Centers? I've gotten some information from them. You can probably tell that at this stage, I feel an urgency for a quick diagnosis and treatment and would rather go to a "one-stop-shop" that can get to the root of my problem quickly without me having to continue poking around in the dark as I've been for the past two years.

    The FFC seems to be a logical next step, but the question is, do they live up to their marketing hype? Will they find out what the heck is wrong with me? I'm desperate.
  12. marti_zavala

    marti_zavala Member

    FFC - I have never gone because I could not afford it.

    There is a search function that lets you select topic to search. There have been some recent posts regarding the usefulness of these centers.

    I believe some here who went felt that the testing was worth the expense (since it is so hard to get tested by doctors).

    There are lots of things to test for as this is a diagnosis of exclusion. Perhaps with your symptoms, they could give you a shorter list of things that are more likely, whereas, we would give you the whole list and you could spend without good benefit.

    Try searching or ask as new post. (it was just discussed here in the last two weeks so you may want to scan the board and you may not get too many responses.)

    Hang in there. Take a deep breath and try to stay calm. When you feel desperate, decisions are so much harder to make and then mistakes are made.

  13. chaps

    chaps New Member

    Thanks for your suggestions.

    I'm going to have this Lyme test, the Bb test (that checks for the bacteria) done and at the same time I'm going to schedule an appointment at the FFC and hope that they can find what the heck is wrong with me.

    When it was just a matter of fatigue and some neuro symptoms, that was one thing, but now that I'm getting aches in places that I can't really identify and joint pain in the shoulders, hips, knees and fingers, that makes it a lot more scary. If this keeps up, I'll end up in a wheelchair in no time. Who knows, maybe a coffin, too.