sujay got my blood test results today

Discussion in 'Fibromyalgia Main Forum' started by tansy, Jun 25, 2003.

  1. tansy

    tansy New Member

    They are as follows:
    Haemaglobin est = 14.2, norm 12-16
    Total wbc count=11.6, norm 4-11
    neutrophils = 7.5, norm 2-7.5
    lymphocytes = 3, norm 1.5-4
    monocytes = 0.8, norm 0.2-0.8
    eosinophils = 0.2, norm 0.0-0.4
    basophils = 0.1, norm 0.0-0.1
    esr 7, norm 1-14
    Platelets = 82, norm 120 - 500, highest yet!
    MCH = 32.9, norm 27-32
    international normalised ratio = 1.1 (unknown units), norm 0.8-1.2
    partial thrombolastin time = 1.1 (unknown units), norm 0.8-1.2
    fibrinogen assay/titre = 3.8 (unknown units), norm 1.5-3.5
    IgG anticardiolopin level = 1.0 (unknown units), norm 1-9

    The only ones highlighted on the sheet were the total white blood cells (good to know they're still high-gonna need them soon), platelets, mean corpusc. haemoglobin (MCH), and fibrin assay time.

    Not much to go on but any useful indicators here?

    In the first seven years lymphocytes and eosinophils always high (as was IgE), esr and neutrophils often raised, platelets much lower. Now all those bar the platelets are mid range. but allergic reactions less severe now and resistance to viruses and recovery from them is poor. Had virus when this was taken, I had expected lymphocytes to be the highest of all my white cells.

    My GPs concerned about any treatments that will "stress" my body due to what's happened in past. She's defintely not happy about heparin: this would have to go through the local haemotologist anyway because he's the one who supervises all the regular tests locally, he definitely won't accept hypercoagulation or heparin treatments.

    She has arranged a few tests to indicate problems with thyroid and hormones, but only allowed a couple to indicate low cortisol. Only if there is some indication on the latter can she arrange the proper tests. We're both getting really fed up with all of this.

    On the plus side she's happy to give me all the time I need, access anything she can on the NHS, any referral I want +++. I asked her if all this was ok, if she was comfortable with my giving her info, asking for her opinion, she basically gave me permission to carry on doing so. I'm so lucky to have found her, now it's just the NHS and local hospital trust that are such pains in the .....


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  2. pinkquartz

    pinkquartz New Member

    i am glad you are happy with your GP.

    i don't know anything about the blood tests, but i know the GP's are very restricted by what they can do on the NHS.

    i have posred on another thread re NPTech saliva tests if you want.....i think it was £40.
    my blood tests for thyroid were always low normal and it has taken me 5 years of persistence to get treated.[plus i first asked for a thyroid test in 1990, 13 years ago]
    i had to changr GP 3 times in 5 years and then get to know my GP so she trusted me and vice versa and then i talked to her over and over about feeling cold, my low armpit there is lots of hypothyroid in my family....finally she did something to test my lower leg reflexes and said ok we can give it a go.
    but the i had to get a referral to the southampton clinic to ask a doctor there to prescribe armour thyroid instead of thyroxine.
    when the GP saw the difference in me on the Armour she was as pleased as i was. its a subtle but noticeable change.
    after this she checked further bloods and upped the dose without me asking her to and then we both saw the improvement. it was at this point i had enough energy to join this board.
    i also loaned her a copy of teitlebaums book and asked her to read just the chapter for physicians.
    she returned the book and said she was buying her own copy !!
    we are making very slow progress, but its brilliant. we are learning to trust each other and i know she really wants me to get better.
    i have to go, hope you get a reply soon re your test results.
  3. tansy

    tansy New Member

    It's so great when they say that and mean it. The GP I see is the same. She understood why I became so desperate for answers and help.

    Today she looked really upset over some things, she's just so human. And she gave me permission to take up as much of her time as I need. Wow! After all these years I still feel like I must be dreaming.

    Going for the saliva test regardless of what basic blood tests show. Not willing to wait any longer. This summer's been the worst of all of them so I feel sorting it can't wait any longer.

    Incidentally not only did I get progesterone drops from David Dowson when he was at Southampton but he also tested for my chemical sensitivities and gave me sub-lingual drops for them. Has Dr Clarke done this for you yet? They really helped me, reactions no where near as dramatic as they used to be.



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  4. pinkquartz

    pinkquartz New Member

    from what i understand so far this should come before thyroid.....and it seems to be so bottom line and essential, I am also going to be excited to see what your test results are.
    Its so weird cos we do tests hoping that they will show something is wrong LOL

    When i did the sailva test the GP also did a blood test which backed up the saliva test results and made her feel more confident to prescribe the cortisol. She gave me just a 2 week trial at first and currently she has agreed to 6 months and then we will review.

    I'm sorry you felt so bad today but then like you said at least the GP saw you like this and can see for herself what happens.
    Sometimes i get wary/suspicious treatment from the home helps until they see me on a really bad day......that usually puts them on my side... i must look really terrible LOL . I would never look in the mirror on a bad day, far too scary ;-}
    When are you going to do the test ?

    Thanks for mentioning re Dr Dowson prescribing drops for Chemical Sensitivites and progesterone, i am making notes to ask Dr Clark about these when i go to see him.


  5. tansy

    tansy New Member

    sent an e-mail to the lab asking how I go about this. Thought I could let this sort itself out by treating hypercoagulation and infections but hot weather reaction meant it couldn't be ignored. If I'm to challenge my body it needs to be up to it.

    Did have a few blood tests done today but you know how it is here. My GP's only allowed to do those that indicate there might be a problem. She has no direct access to free T3 or cortisol levels. So we're having to rely on blood sugar levels, creatine, basic thyroid, and hormone.

    Hope the centre in Southampton can help you with progesterone and allergies, I'm so surprised they didn't check the latter, perhaps it depends upon who you see there.


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  6. sujay

    sujay New Member

    Hi, Tansy,

    I have to say I agree with your GP. LMWH might be OK to try unless you developed low platelets after treatment with heparin. (It's a rare complication, but your platelet count is too low to take any risks. LWMH does not cause that particular problem unless it was originially induced by heparin in the past.) If your ISAC panel were positive (assuming you could figure out how to get it done) you might be able to check the effect of bromelain on your soluble fibrin monomer, and then consider a trial of low-dose lumbrokinase. Of course, if you can get the ISAC Panel done your doctor could discuss options with Dave Berg, which would offer you your best hope for effective intervention.

    I'm afraid I'm indulging myself by thinking out loud. However, there are way too many complicating factors here for me to do anything but muse out loud. You'll have to keep working with your GP. Thank goodness you've found one who's willing to work with you.

    Best wishes, even if I don't really have any helpful advice,
  7. tansy

    tansy New Member

    I'm pretty sure sure my thrombocytopenia is linked to my illness. There was no mention of low platelet levels when I was pregnant etc but in those days patients weren't given much info. My GP did ask if I knew whether the raised fibrinogen was significant.

    My GP was really worried though that I'd make myself worse through trying to get better but I'm telling her everything I'm doing and so far she's ok with it, probably because she doesn't believe bromelain will break down fibrin.

    Is it worth going onto lubrinkonase once DEs start to have the desired effect? It's extremely unlikely any doc will prescribe LW heparin for me in the UK on the NHS or even privately. If I thought the isac test would help change this I'd do it but I don't need it to believe this is going on, I know it is. Do you think it worth my while e-mailing David Berg again with regard to this?

    If I have to go about this my own way, with a supportive GP, and it starts to change things, then I'll be in a better position to push this for others.

    I canot see my GP prescribing long term antibiotics she did not like the sound of this at all.

    Going to see if I can find anyone in the UK, other than just Dr Hyams, who will look into hypercoagulation and treating stealth infections. It's just too important to have it ignored here.

    In the meantime getting DHEA, cortisone, and hormones checked out; after such bad reactions to heat feel this is necessary.

    I think hypercoagualtion explains so much. You and jellybelly have been so busy getting this across to us all and I'm so grateful that you have both kept this at the forefront of our minds.


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  8. sujay

    sujay New Member

    I'm glad you're still working on this. I truly believe that hypercoagulation holds the key to this illness for a lot of us, and, though I'm still not keen on long-term antibiotics myself, I think we have to seriously consider the part the immune system plays in all of this. I am convinced that empiric treatment (with antibiotics) got one of my patients off disability and another patient into college (after learning to fly airplanes and getting a job and apartment in another state. It's harder to prove your independence from mom and dad after you missed high school because you were too sick to get out of bed for more than the first two weeks of each semester.) Also, dermatologists put patients on long-term antibiotics for acne all the time. Please don't tell me that acne is more disabling than the disease we have all been struggling with!

    I'll look into the pros and cons of using bromelain in conjunction with lumbrokinase. My concern is that suddden reexposure to a pathogen might trigger more active coagulation and cause more trouble than it's worth. I don't want you to go and have a stroke, or another PE. Like your GP, I'd hate to put you on heparin again, so we'll just have to look for another approach in your case. I'm so glad that she and your brother are taking your complaints seriously and working so hard to help and protect you. I'll look forward to hearing how you progress.

    Best wishes, as always,
  9. tansy

    tansy New Member

    In the meantime I'm continuing with my bromelain. Considering then going onto inflazyme forte unless low doses of lubrinkonase more suitable. Inflazyme forte is the product Dr Ian Hymes in London prescribed for nickname.

    I'm well aware of the dangers for me so I'm going about this very carefully, just SLOWLY trying to break down the fibrin because I feel that will be safer. I also know what happens when my lymphocytes and esr go up so that's another reason for approaching everything with care.

    My problem is going to be deciding what I use to help kill of the pathogens once breaking down the fibrin starts to have it's effect. Will probably try olive leaf extract again, maybe it will be more effective this time. Just about to use one of the SBOs in powder form to see if it helps the mouth to stomach area, GP approves of these.

    I like the sound of Dr Hyams iv treatments, they're supposed to be gentler than the drug alternatives.

    Whilst you and I accept the use of antibiotics my GP knows I've had problems with candida and a lot of drugs, so she's very anti this at the moment. It may be that in time I can get her round to this way of thinking but it won't be easy. I really do feel something like doxy needs to be given a go.

    Saliva test should indicate any problems with DHEA, cortisol etc, any problems in that respect needs addressing now.

    If I and others in the UK find ways around this that don't depend upon the NHS then it will offer hope to others. Very few CFS patients get any real help and treatments here, only a few doctors, thought of as quacks by many of their peers, seem to be making any real effort to improve the ramifications of their patients' illnesses.

    It's a challenge but I'm not going to let that stop me. At present still thinking who in the UK will be most receptive to this. Brother certainly had no joy when he approached other doctors but I do know a lot of people from the time I spent helping to run Action for ME. If I make any progress on this you'll be the first to know.

    So it's thinking hats on.

    Thanks for all your help to date. If we can sort this between us it's more valuable information for others in a similar boat.


  10. nickname

    nickname New Member

    If you are looking for some more docs treating hypercoagulation, then I've got some paperwork from Dr Sarah Myhill and Dr Julian Kenyon, both of whom recognise and treat this problem. I Have not seen them. If you are near Sarah Myhill, you might get to see her on the nhs. Julian Kenyon does take referrals from the nhs for limited treatments, if your gp is willing to get the funding. Don't know of any others apart from Dr H. I know that Chris Masccarenhas at Cambridge, uses bromelain and papaya for this prob, but he is not a doc, but alternative - I have seen him.

    Best wishes
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  11. tansy

    tansy New Member

    I looked up Sarah Myhill's web site, saw all the other treatment protocols but not that one, but of course that may have been my loopy brain again. Knew Julian Kenyon through Action for ME work. When I saw him as a patient his treatments didn't work, or they made me ill - not a herx or healing crisis. But that was years ago and he will have obviously learnt a lot since then.

    However, when we had a local ME Study Day for health and allied professionals many years back, he was the doctor who gave info on the less orthodox approaches. The few doctors who were there poo pooed his ideas but some of the community nurses, physios and OTs were impressed. Our other speaker was Betty Dowsett who didn't agree with a lot of it but she knew he was presenting a talk when we asked her to contribute.

    Nickname once again you've been a real gem. The info you've provided has been so helpful.

    Thank you so much.


  12. tansy

    tansy New Member

    Hi Nickname

    I checked out Drs Myhill's and Kenyon's websites. According to her website Dr Myhill tried out heparin on 4 patients but none of them improved, which is a shame because she's a medical advisor to Action for ME.

    Dr Julian Kenyon does recognise it and treats it if he feels it's necessary BUT he is very expensive. I have to admit I'm a little wary of him too because of past problems, for example he insited on tanalbit for candida which left it to keep getting worse, having already had problems with this due to steroids and being refused antifungals etc it was the last thing I needed. There were other problems too due to his ever changing approaches, I don't mind being a guinea pig providing I chose to be so.

    I will now see if I can get some onfo from Chris Masccarenhas.


    The above might be of some interest to you as well. I will keep on searching though, the must be others who have learnt about hypercoagulation and considered it's role in CFS.

    Love to you both

    [This Message was Edited on 06/28/2003]
  13. sujay

    sujay New Member

    I'm following this all with great interest. Thank you.

    Just as it's important to find out exactly what kind of problem we might be having with coagulation, it's also important to try to identify any pathogens that might be involved. Viruses will not respond to antibiotics, but one can sometimes find transfer factor directed towards particular viruses. (Immunepro is one company that has this available; check out compound 64.)

    I always try to identify the pathogen by PCR before considering treatment with antibiotics. The only time I resort to empiric treatment is when the tests are not available and we have a strong history suggesting previous mycoplasma infection.

    Remember that we are probably dealing with organisms that don't cause problems for most other people; the 80-85% of the population that don't have some kind of problem with hypercoagulation manage to shrug off these infections with no evidence of permanent damage, which is probably one reason why most doctors look askance at the possibility that they may be pathogenic for us. The problem for us is that these pathogens may have had plenty of years to imbed themselves deep in our systems (hence the term "stealth virus").

    If we can somehow counteract the coagulation problems, boosting our immune system might give us enough of an edge to recover without antibiotics. The importance of good nutrition, regular aerobic exercise (as tolerated) and refreshing sleep (plus a clean conscience, which is the best thing I know to keep stress low) cannot be overemphasized. However, transfer factor, naltrexone (which boosts natural killer cell function when given in low doses) and other supplements, such as OLE and quercetin (BTW, there's an interresting article in this week's email bulletin on this site about the latter), may boost our immune systems enough to get everything under control again. The trick is to find a protocol that is safe, effective and affordable for each of us.

    I'm glad to see people are out there trying, but even more important, sharing their thoughts and experiences with others. It's no substitute for good clinical studies, but with noone standing ready to make a bundle on any of these proposed therapies, we're probably going to stay stuck with the prospect of educationg ourselves as well as we can and then finding a doctor who will be willing to work with us as we experiment on ourselves. Good luck out there, everybody, and thanks for taking the time to share with the rest of us.
  14. beckster

    beckster New Member

    you said about your doctor testing your lower leg reflexes..
    How does that tie in?????? Am I correct in thinking you meant your reflexes were very poor??? Thanks for your help. the Beckster
  15. nickname

    nickname New Member

    As I understand it, Sarah Myhill will treat u via the telephone and then in conjunction with your GP, who sounds brilliant at working with you. In her paperwork which I ran off from her site a couple of years ago - it's slightly different now - said re Heparin "If anybody is interested in trying this treatment, then I would be very happy to supervise it in conjunction with their GP. It would be very nice to get some basic tests of blood coagulabitlity done in a lab. However, this may be difficult as most labs are geared to looking at a bleeding tendency rather than a clotting tendency. However, since the treatment is harmless and simple, I would not be averse to trying this treatment for patients without these tests being done, but of course with the involvement of their GP. If the GP refuses to supply heparin, then I can supply. The approx cost would be about £1.50 a day. Please get in touch with me if you are interested." This is a direct quote from that paperwork, but as I say it is about 2 years old or so. She acknowleged Berg's work in same.

    Don't be put off by only 4 patients not responding - we are all different. Myhill did not have any good responders to Glutathione injections, but my friend puts that down as her cure (she was under Dr H.)

    As for Julian Kenyon - yes, I feel he is a bit off the wall, but listen, as I said to my GP, you have to look outside the boxes. Us sufferers know this now - find what works for yourself - you have a brilliant GP so u can present info and have her work with u within the constraints of the nhs - mine says that there is no hope, they don't know what me is, all these so called me specialists are phoney, and it's all a waste of time and money. That's the crap I have to listen to, but there's no better in my area. It's a good job I have a strong will, cause I would have gone under years ago. You've got to have docs who are willing to push the bounderies, that's why they get their quack descriptions - it's so difficult in conservative UK anyway. That though, is how cures are found - just look at history.

    Anyway, he does take referrals from the NHS, as I said in my last post, so long as your GP is willing to get the funding, which they apparently have to apply for. Also both u and he have probably come a long way in your knowledge since you last saw him.

    Chris Mascarenhas is at the Highway Health Practice in Little Paxton, Huntingdon, Cambs. 01480 390790. He is a biochemist by training - alternative - cannot supply any prescriptions - is extremely knowledgeable about me - Dr H passes over any patients to him whom he feels would benefit from more nutritional advice as opposed to medical - he also does a day clinic somewhere down in Devon (can't remember details) plus in Guernsey.

    I'm still on the Inflazyme. I phoned Dr H's clinic to order some more and told them to tell Dr H that my feet had turned white! When I received the delivery, I phoned them back to thank them, and they said that Dr H said "brilliant." I don't talk to him till next month as I am waiting for more test results to come thru before that, so won't be able to follow this up with him till then.

    Also started the LDN a couple of nights ago, but at only half the dose. No adverse effect, but it's not high enough for any benefit - I have slept much deeper though.

    Got to go - head gone again now.
    With best wishes
  16. tansy

    tansy New Member

    When I checked Dr Myhill's site yesterday it only said that she had tried it with 4 patients and it hadn't worked. There was no mention of helping GPs with heparin etc. Still don't think my GP will agree though she was pretty adamant on that. Dr Myhill might not either because my platelets are low. I still might e-mail her regarding this though.

    Local primary care funding authority is really bad these days at paying for things like seeing Dr Kenyon, but will still discuss this possibiblty with my GP. Problem is he only covers a few basics with NHS patients. My other concern is he is not careful enough and can get very tunnel visioned at times. To be honest after my experiences before, and some other patients with ME, he's at the bottom of my list, as against not being considered at all.

    I do have to be even more careful than most because I've had a PE in the past, my fibrin's raised a bit too, so all this needs to be approached with all the relevant factors in mind; hence the need to choose the right doctor. I honestly think I'd be safer without one than with the wrong one.

    Am considering using Dr Teitelbaum, or similar, by e-mail after I get my salvia and a few blood tests interpreted. Also will send test results to David Berg and see what he says. Problem with most of viable options is they're too expensive. Couldn't afford to keep what I was doing before going let alone what needs to be done from now on. Yet another of those many many occassion when I'm really p..... off with our NHS and our so called ME specialists.

    My GP's supportive but really unsure on all the things I've covered with her to date. She's not that up on ME, sees it as a range of conditions that have been given one label. But she does care and wants to help. Recognises I am genuinely very ill and that in itself helps.

    Will check out Chris Mascarenhas later. Can sort out dietary/supplement stuff myself but I would like to discuss his use of bromelain and papain because he's clearly got a reasonable grasp some necessary concepts.

    It's good that Dr Hyams is pleased with your recent improvement, must mean it was meant to happen. It must have been so encouraging to have that response. Even when we know something's going right it helps to have those reassurances from the right person.

    Take care and thanks again for the info and thoughts.


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  17. tansy

    tansy New Member

    Have already checked at the supps you mentioned, might try the bromelain and quercitin instead of the inflazyme forte, what do you think?

    As to your other suggestions for a strong immune sytem, I'm ok on diet having got it more or less right, lots of good protein, vegs, etc.

    Good quality sleep is still elusive, I'm now getting some but it seems to be mostly the first two stages, I know it's still not deep. Hoping that will come as things progress. Allowing my messed up day night cycle to just go however it needs to for now, will attempt to change that around once sleep has improved.

    Muscle wise I mistakenly asked the haematologist I saw if low levels of HGH, through lack of sleep, was adding to muscle loss and the major problems I have over any injury to them, no matter how minor. Big mistake that, he jumped on me saying no way would he give me HGH injections, I hadn't asked for that. This is a guy who diagnoses CFS but who only tells his patients to pace themselves.

    Aerobic exercise, now that's the thing that really bugs me. Any attempts even at gentle ones, for years have resulted in very rapid heartbeat and breathlessness. The muscles give out quickly too, though I do all I can otherwise to keep them as strong as possible. Repetitive movements are the worst and have been all the way through this.

    The muscles I use the most, and which should be the most developed, are actually losing their bulk: they're getting weaker too. 4 EMGs in the earlier years showed a consistent abnormality, this was described as perfusion thought to be attributed to myopathy/myosistis and indicative of Eaton Lambert Syndrome.

    A doctor I saw who specialised in nutritional medicine tried a thermal test twice after that which showed a delay in the peak on movement then a very long time coming down again. He was concerned, thought some of it might be my low magnesium and lacticacidosis/perfusion through lack of oxygenisation.

    The circulation in my limbs is very poor, improves on some activity then gets worse again if I go beyond that.

    So do you think this is down to hypercoagulation because it certainly seems a strong possibity to me. If my muscles aren't getting the oxygen or essential nutrients then the cells can't function and they can't recover from more than an extremely low level of usuage. If this is the case then once things improve my muscle function should do. I'm really looking forward to that.


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  18. tansy

    tansy New Member

    Like you I know it's part of my CFS. When my lymphocytes and esr go up they drop down further, when my lymphocytes are at normal levels or below and esr is ok then they range between 60 and 82.

    It must be frustrating to have found something to help with the viral infection and then find it's not availble now. Back to the alternative route again, if the immune factor does help you and others it means those who don't have supportive docs have some further choices.

    I'm still using bromelain for hypercoagulation, early days yet so I'll have to wait and see.



    ps have tried sending you an e-mail but it kept being returned.

    [This Message was Edited on 06/30/2003]
  19. pinkquartz

    pinkquartz New Member

    in fact i can hardly remember.....but i think she hit either the ankle or the knee. anyway she did it and it convinced her that there was a problem.

    if i find this info in a book i will let you know, cos i think i read it somewhere a few months ago.
  20. sujay

    sujay New Member

    Exercise is hard. (When I first started I could only do 4-5 minutes at a time followed by 4 hours of complete collapse. I had to walk in place next to my bed so I could fall into it when done.) I have to remember, though, that I had been sick for less than a year when I started taking specific steps to deal with it. I spent weeks in bed hardly able to move an eyebrow, but I can't even imagine what it must be like to live with this for years and years. I didn't notice significant improvement in muscle tone until I started antibiotics for the mycoplasma.

    I have to admit I'm still leary of antibiotics. I don't like giving them long term, or when I can't be sure exactly what I'm treating. I do think Mycoplasma Fermentans is worth going after (partly because it seems to be associated with ALS, which is a very serious problem indeed).

    I'm also concerned because we seem to be at risk for a whole host of opportunistic infections, all of which seem able to worsen our underlying condition, so I'd like to find some way to boost the immune system and prevent new infections as well as deal with those we can identify as already established. I do suspect bromelain and quercetin is a good combination. I'm not familiar with the inflazyme, so I can't compare them - just can say the combination I mentioned seems to be worth a try. Colloidal silver is another interesting substance that may play a positive role in fighting off both viral and bacterial infections, but I haven't really had a chance to look into it yet. (I'll just drop some hints and lurk. I could get lucky and have someone like Jelly do some of the work for me.) I'm also intrerested to see that a lot of people are trying LDN (low dose naltrexone) because our natural killer cells don't seem to be functioning properly, and supporting them ought to be advantageous. I'm also intrigued by the information plantscaper and others have been posting about olive leaf extract.

    Hang in there and keep your ears open. Thanks so much for sharing with us. We'll look forward to hearing how you do. Problem is, I don't think there is any one magic bullet, even after we've recognized hypercoagulation as a key, so I'm trying to keep my eyes and ears open, too.

    Good luck to you and your doc,