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Tests coming in from Dr. Bradstreet

Discussion in 'General Treatment' started by Shoesies, Feb 7, 2013.

  1. Shoesies

    Shoesies Senior Member

    Well I find myself more confused after some initial tests came in. Dr. Bradstreet reviewed them by skype.

    1gm23 antobody positive - no others, he does not think lyme
    CD57 - 175
    High CD3
    High CD8
    Hemoglobin VERY high he states
    Calcium extremely elevated
    EBV reduced antibodies at this time
    Liver function poor
    T3 low
    T4 low
    Vit D levels 48.5

    He indicates Autoimmune Thyroiditis
    Possible Parathyroid tumor

    Wants to continue GcMAF and add Cytomil (sp?)

    At this point I am confused and do not know what to think.
    Oh and he added the caveat that I am post menopausal...duh. Told him that at initial visit. I am WAY post...done with all the hormone surges and hot flashed years ago. So WHAT THE HECK causes these relapses, cognitive issues, flu like symptoms and WTH am I couch bound for months at the time when I do relapse. This has been going on five years now. I am quite sure those symptoms are not symptoms of freaking menopause. ARGH.

    *****Nagalase test due in three to four weeks. Maybe we will get some info there.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Shoesies

    Did he test Vit D 25 and Vit D 1,25? Since your calcium is so high your Vit D 1,25 could be high too. Which is another area to consider.

    Sushi
    Ema likes this.
  3. snowathlete

    snowathlete

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    When I first got ME CFS and wanted to rule things out rather than accept my GPs guess, one thing I checked was calcium because of parathyroid. This could be good for you. Don't rely on me for this but I think you have four of them in your neck but people have faulty ones removed with fairly simple surgery and do fine, improve a lot. So well worth following that up!
  4. Shoesies

    Shoesies Senior Member

    snowathlete Yes, I am running down the parathyroid issue. Follow up blood tests on Monday. The other elevated C3 and C8 concerned me...that and not getting exact numbers from Dr. Bradstreet. I have an appt now to go over my concerns with him. If I am not satisfied with treatment plan at that time I will start the process to see KDM in Brussels. There are flights from ATL to Brussels that are not that expensive if you go on Wed. Keeping my options open because I cannot go through too many more relapses like this last one. IF just one of these docs went through what we go through...they would understand the desperation. It is reasonable and rational considering.
    roxie60 likes this.
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    high cd8 can indicate commonly active infection to ebv, cmv, unsure on hhv6.
  6. clive powney

    clive powney Senior Member

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    try http://www.parathyroid.com/parathyroid-symptoms.htm some people get well very quickly if that is the cause
    Little Bluestem likes this.
  7. rlc

    rlc Senior Member

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    Hi Shoesies, I understand your confusion; you have multiple failed results, which can indicate many possible diseases. The good news is that there is a good chance that they are treatable, when you are diagnosed properly.

    My concern is that you should not be taking alternative treatments like GcMAF, until what is wrong with you has been diagnosed correctly. Your test results indicate that you probably have several potentially treatable diseases, and because you are not supposed to fail all these standard tests if you have CFS, your results indicate that CFS is almost certainly not your problem, and that you have something/things else instead.

    I’m also concerned about alternative doctors making your diagnosis for you. Doctors only now what they specialize in, and doctors like Bradstreet and KDM do not have the specialist training to be able to diagnose a lot of conditions. And if what is wrong with you is not diagnosed properly, it could have terrible consequences.

    My recommendation would be to get Dr Bradstreet to send you copies of all your test results, and then take them to your GP, and get them to send you to the relevant specialists in the Hospital system, as soon as possible, to increase the chances of you getting the right diagnosis and treatment.

    Obviously your GP has not been doing a very good job, as they should have done most of these test for you five years ago, but when they see the test results they should take you seriously! If not get a new GP.

    High calcium can indicate a parathyroid tumor, which you will need to go to hospital for tests and surgery to correct. However high Calcium can be caused by 117 other diseases see http://en.diagnosispro.com/differential_diagnosis-for/neoplastic-disorders-calcium-serum-lab-increased/11935-154-140.html High hemoglobin can be caused by 95 diseases see http://en.diagnosispro.com/differential_diagnosis-for/hemoglobin-lab-increased/11909-154.html Abnormal liver function tests depending on what they are, can be caused by many diseases. Your low T3 and T4 could be hypothyroidism, but could also be caused by a pituitary problem see http://labtestsonline.org/understanding/analytes/t3/tab/test

    So you are going to need to see Doctors who specialize in the right disciplines of medicine to diagnose you correctly. Although your vitamin D levels are low if the result is in nmol/L, whatever you do, do not take vitamin D supplements, some of the diseases that cause high calcium will react very badly to vitamin D.

    The good news is that you have a stack of failed serious test results, which indicates one or more conditions that are not CFS. If you can get these results investigated by the right specialists, they should be able to diagnose and hopefully successfully treat you for these conditions.

    Hope this helps

    All the best
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    ric

    Sushi
  9. Shoesies

    Shoesies Senior Member

    rlc Thank you for responding and all the info. I am looking into the parathyroid issue.I am no longer comfortable with the establishment of the american medical society. I am not interested in just treating the symptoms. I would be quite happy to find that I am not ME/CFIDS...my GP espoused that diagnosis after 2 years and ten months now of EBV and he opined CAEBV and then CFIDS. So it was not Dr. Bradstreet who gave the diagnosis nor KDM. I have yet to find any negative verifiable info on KDM. I am doing my utmost to be measured and diligent with my health care. I would love to have something that could easily be remedied as I do not believe I can handle another three month relapse like my last one.

    .
  10. Shoesies

    Shoesies Senior Member

    ....and the CD3 and CD8 results still concern
  11. rlc

    rlc Senior Member

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    Hi Sushi, don’t get me wrong, I’m not saying that the likes of KDM don’t have some impressive qualifications, but they may not be in the right specialties for what Shoesies test results indicate that the problem is likely to be. Their test results indicate they most likely need the knowledge of an Endocrinologist, and possibly a Hematologist, KDM is neither of these. Because medicine is so complicated, if you don’t get sent to the right kind of specialist, you are likely to get the wrong diagnosis and/or treatment. Which can be disastrous.

    All the best
  12. rlc

    rlc Senior Member

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    Hi Shoesies, totally understand not feeling comfortable with the Medical establishment. They can certainly be less then helpful at times, and you should have had these tests done before anyone even considered a CFIDS diagnosis, it is after all a disease of exclusion. However because you have failed some tests that indicate the possibility of something quite serious, I would imagine that this should lead to a prompt investigation to find the cause quickly, and hopefully it will be something curable. Once you know what’s wrong, you can then consider if you want conventional or alternative treatments depending on what it is.

    I’m not saying that KDM etc are in any way bad doctors, it’s just that you are likely to have to see Doctors who specialize in different areas of Medicine, and you may need the likes of Imaging Studies MRI etc, to find the cause, which you will need to go through the Hospital system to get. Plus it will save time and travel expenses. I don’t know enough about CD counts to comment, accept that many diseases can affect these results; you may need someone like a hematologist to sort that out.

    Hope you find the answers soon!

    All the best
  13. Shoesies

    Shoesies Senior Member

    rlc thanks so much. I am headed to the GP tomorrow...he keeps weekend hours. Taking test results and info we will see what can be nailed down. Praying for answers. Thanks for the good wishes.
    roxie60 likes this.
  14. rlc

    rlc Senior Member

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    Glad to help Shoesies, fingers crossed all goes well at the Doctors tomorrow!!!

    All the best
  15. Shoesies

    Shoesies Senior Member

    Well folks, spent two hours with my GP today..he indicates that high calcium and high hemoglobin is quite probably dehydration. Has ordered D and D, 1 25 blood tests again. He is not convinced in any way that I have a parathyroid tumor. Do not have the other symptoms. The hypothyroid has been managed with medication for 20 years but during my last re-activation of EBV it went crazy high so he pulled me off totally. My fatigue, PEF, inflammation, insomnia and the headaches are not related to the thyroid according to him. Dr. Beliner told me that the CD3 and CD8 elevations are directly related to EBV <---I curse this stuff to HELL.My liver function was bad when I first was diagnosed with EBV, he tells me that EBV hides in B cells in the liver so this explains that result. He feels we do need to do the other Lyme tests and I will pursue that immediately. He feels that my symptoms relate to CAEBV and stated that the diagnosis of ME/CFS or as he calls it, CFIDS is attributed to a patient that has an underlying viral or other precipitating event that causes the majority of the symptoms listed in the CDC guidelines that persist for more than six months. So, IDK if I am considered so or not. He has stated and documented it. I frankly do not want this or any other illness...I just want to get well. I will give the new antiviral regimin and GcMAF time to work as he has requested. If I am still relapsing to the level I have been, I will get my fanny to Brussels and KDM. I think of him as the ME/CFS Viral/bacterial/lyme Dr. House.
    roxie60 likes this.
  16. Creekee

    Creekee Senior Member

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    Hi Shoesies,

    I have to disagree with your doctor who claims fatigue, PEF, inflammation, insomnia and headaches can't be related to thyroid. Your tests show "low" T4 and T3. Doesn't sound like a gray area. Given how comparatively simple it is to optimize thyroid, I would get supplemented immediately. It disturbs me that your doctor isn't addressing this. Have thyroid antibodies been tested? That would be an explanation for things going "crazy high." Odds are somewhere between slim and zero that someone who needed thyroid meds for 20 years will be okay without.

    Hugs!
  17. rlc

    rlc Senior Member

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    Hi Shoesies, sorry to hear you had such a bad doctors visit, my opinion is that you should get a new doctor as soon as possible!!

    If you have been medicated for hypothyroidism for 20 years, taking you off the medication like that could be very dangerous. Have you been tested for thyroid antibodies, iodine, or had a thyroid ultra sound? And do you know what your last TSH test said? Hypothyroidism doesn’t tend to just cure itself, and your T3 and T4 tests indicate you probably still have it, in which case you should be being medicated for it.

    When medicating hypothyroidism it is very important to get the dose right or people stay sick, and to keep correctly adjusting it, because thyroid function normally keeps decline over time. Dr Mirza explains in this article http://www.bmj.com/rapid-response/2011/11/02/unveiling-mysteries-thyroid that the goal of treatment should be to reduce TSH levels to between 1 – 1.5, I wonder if your doctor has been medicating you correctly? If not badly medicated Hypothyroidism would explain a lot of the symptoms you are reporting, no matter what your doctor is saying, see http://thyroid.about.com/cs/basics_starthere/a/symptoms.htm

    Stating that your high calcium levels are probably due to dehydration and leaving it at that, is potentially very dangerous, because it is also a sign of many very serious and potentially fatal diseases, and should be investigated further see http://www.mayoclinic.com/health/hypercalcemia/DS00976/DSECTION=causes

    If you want to know if you are dehydrated, how to tell if you are is explained here http://www.youtube.com/watch?v=xubOfydmc7o

    Parathyroid symptoms are here http://www.parathyroid.com/parathyroid-symptoms.htm your doctor should have tested your PTH, Parathyroid hormone levels to make sure!

    Is it this doctor, who is telling you that you have reactivating EBV? These tests are often read completely wrong by a lot of doctors!

    The symptoms found in the CDC guide, lasting for over six months, are also found in over a hundred other conditions. CFS is supposed to be a disease of exclusion, where all other diseases that could cause these very common symptoms, are ruled out, before being given a CFS diagnosis. Just having the symptoms in the CDC guide is meaningless, you could have any one of a hundred conditions, including Hypothyroidism, which you appear to have, which is not being properly medicated.

    My opinion would be to get a new doctor immediately, it would be wise to get someone to investigate and properly medicate your thyroid issue as soon as possible. This is because if you have had Hypothyroidism for twenty years, Thyroid function usually declines to a level where there is virtually no function left. Not sure what your TSH levels have been, and don’t want to alarm you, but hypothyroidism can lead to Coma see http://emedicine.medscape.com/article/768053-overview

    If it was me, I would want to get the thyroid treated, before adding the extra stress of a long journey. I don’t know where you are, but somebody may be able to point you in the direction of a good Endo, if you want to let people know which city you are in.

    Again sorry to hear you had such a frustrating visit, unfortunately some doctors can be less then helpful, but there are also a lot of very good ones out there, it’s just a matter of finding them.

    Hope this helps

    All the best
  18. Shoesies

    Shoesies Senior Member

    I have been under the care of an endocrinologist...we have been treating the hypo issue through Dr. Berliner. He did take me off over my protest because during the last reactivation of EBV...my thyroid function swung "critically high" at the same time the liver function was up. I am very familiar with hypothyroid effects on the body. These relapses involve flu like symptoms and fever, cough and of course the tests that indicate off the charts EBV. The parathyroid tests will be done tomorrow, so that angle will be investigated. Still praying that I find an answer soon that resolves the relapses...I am deathly afraid that my body cannot handle any more relapses. We are adding cytomil to support the thyroid.
  19. rlc

    rlc Senior Member

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    Hi Shoesies, glad to hear they are checking PTH, I take it you are saying that you went from hypothyroidism to Hyperthyroidism, which is why they stopped your meds. From my understanding this can happen but is rare, it can also be caused by too much thyroid meds, and can then sometimes flip back to hypothyroidism, again. It may be a good idea to get a second opinion from another endo it sounds like a complicated situation. Your flu like symptoms could be Hyperthyroid symptoms see http://www.medicinenet.com/hyperthyroidism/page4.htm#what_are_the_symptoms_of_hyperthyroidism Hard to know what is the main cause of your problems at the moment. Hopefully new tests will help to clear up the picture of what is going on.

    Take care, and I hope they sort it out for you soon!

    All the best
    Shoesies likes this.
  20. roxie60

    roxie60 Senior Member

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    Shoesies any updates to your quest for answers?

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