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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
Discuss the article on the Forums.

A great starting point for M.E. tests......

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Goodness to M.E., Aug 4, 2013.

  1. roxie60

    roxie60 Senior Member

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    rlc, thanks for your efforts to bring other perspectives such as Dr Mirza. Also someone, I cant remember, posted a link to Dr Rind and his thyroid scale (did you post this?). I have spent hrs on this and wonder about its validity. I seem to be so sensitive to slight changes in my system and wonder if he might be onto something regarding subclinical levels. Can someone really fel so ill and have subclinical levels? I know how bad I feel and wonder if this might be it, just had blood drawn today looking forwasd to see thyroid paenl results and plug into his scale.
     
  2. rlc

    rlc Senior Member

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    Hi Roxie, re

    Happy to help, I think most people here are at the end of their rope with their doctors, not many people seem to be getting good help, I’m sorry I haven’t done any research on Dr Lynchs views so I can’t really offer any advise at present.

    RE Does Mirza speculate on if the EBV triggers some other immune system issue that becomes a life long problem left untreted or identified?

    All I know about doctor Mirza is based on his articles most of which are in this tread, he doesn’t speculate on EBV triggers on the immune system in these articles, so I don’t know what his views are.

    He strikes me as someone who likes replicated science, and keeps up to date with it, the problem with so much of the research behind CFS is that it hasn’t been replicated it is just theories, the research may initially seem convincing, but the reality is that the vast majority of theories in medicine turn out to be incorrect and are rejected, when they are properly investigated by the rest of the scientific community. So I advise people to be cautious and careful especially if it involves spending large amounts of money, which may be better spent on conventional testing.

    All the best
     
  3. SanDiego#1

    SanDiego#1 SanDiego#1

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    ric- Just for the record-I don't even tell a Dr. I have CFS when I go into see them for the first time. I tell them my symptoms and see where we go. I do understand what Mirza is saying. However. At the time when I became ill. I am saying also everyone in my office came down with MONO. I began Immune Globulin shots as part of a study and still till this day take them. If I don't I start to go downhill. Everyone in the office was ill for over a year off and on. That said I do not blame everything on Mono or EBV.. I have found out
    if you go into a Conventional Dr. now and say I have CFS-they already have their mind made up. I am either Psycho
    or nothing they can do will help me. This includes Urinary infections, Gyn infections, sore throats, even eye.
    I try to choose my Dr. carefully. That does not always work either. Most will not even read anything from Infectious disease Dr. or CFS Dr. Also CFS have their own way of of diagnosing things. They will leave out the simple tests that may rule out something simple when they already have a blood draw and immediately go to the $500.00 one. Then not give you an answer-other than "Nothing I didn't expect." One thing I do think-Having Mono and CMV can wear your immune system down so much that you then are open to Opportunistic infections that are not actually CFS. I do know after I became sick with Mono- I was exposed to Pesticide Tried to have Chelation and wound up in emergency room
    that.I did order the book form Dr. Mirza. I do not know why if he can prove it-HE DOESN'T!!!! Talk is cheap and we need someone who is SERIOUS about this to help people whose lives are drifting away.I am not here to make anyone famous.
    Like I said, I am buying the book-but he needs to offer more.I am probably doing better at this moment than I have in 5 years. Found out I had Very Bad sleep Apnea not HEART FAILURE AS CFS DR SAID. Been using the CPAP machine now for almost 6 weeks. Had stopped breathing 30 times a night. Hate the machine-but love the results. I have never had any CFS Dr. even rec this for me. My ENT ordered it. Hope many other patients will consider a sleep study.
    It has really helped me.

    WHY ISN'T MIRZA TRYING TO EXPLAIN MORE ON WHAT HE IS SAYING-INSTEAD OF YOU?????
    IS SELLING THE BOOK HIS ONLY AVENUE??

    San Diego #1
     
  4. rlc

    rlc Senior Member

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    Hi San Siego RE,

    There seems to be a misunderstanding here Dr Mirza has not written a book as far as I know and I’m not sure what you are referring to?

    Since I first wrote the article that Goodness to ME has reposted, the original links to Dr Mirza’s original articles in the British Medical Journal have changed, they no longer take you directly to the articles, but they can still be found by clicking on rapid response. The original articles can be accessed directly by clicking on these links.

    The Myth of Chronic Fatigue Syndrome http://www.bmj.com/rapid-response/2011/11/01/myth-chronic-fatgue-syndrome and NICE and CDC miss the boat http://www.bmj.com/rapid-response/2011/11/01/chronic-fatigue-syndrome-nice-and-cdc-miss-boat If you read these, you will see that he is giving away information on how to get the right diagnosis for free, he is not profiteering from this.

    Dr Mirza has placed these articles on the British Medical Journal site so the medical world can see the information. The British Medical Journal is one of the most read journals in the world. I’m sure he has also made his views known to others in the medical world, but he is not in a position of power to make changes, he is just a working doctor. However his information in is the medical world and myself and others have spread it over the internet and it is being ignored by those that could use it to make a difference. He says he has the case notes and can prove what he is saying. I believe this is a legally binding statement. I would have thought that those in the CFS world, be they governments departments, doctors and researchers would have been very interested in this and taken him up on the challenge, after all he is saying that human suffering can be relieved. I would have thought that those that claim to care would have been interested. Instead in six years nothing seems to have happened.

    The reason why I have posted Dr Mirza’s articles many times and asked with no success to get PR to put them in a prominent place is, because I can see that they have the potential to help many people. Many people have not believed what Dr Mirza is saying, they have questioned if there is science behind it, which is why I wrote the article that Goodness to ME reposted, to providing simple information on the conditions that Dr Mirza outlines and links to medical information showing that what he is saying is science he is not just making it up. I have provided the information that Firestormm requested about the science behind the up to date reference ranges that Dr Mirza recommends.

    I believe Dr Mirza’s information is very important not only because it could lead to many people getting the right diagnosis and having their suffering ended or at least greatly reduced, but also because CFS is supposed to be a diagnosis of exclusion, all diseases that could explain the patients suffering must be excluded before someone can be diagnosed with CFS. Dr Mirza’s articles show that this has never happened in research, which means there is no proof that any of these people had CFS, so there is no science behind CFS. CFS is as he says a Myth.

    Very sorry to hear about your experience with Chelation, Dr Hyde is very much against it as a treatment he says here

    Q: 9 ) I have very high heavy metal toxicity after EDTA & DMPS chelation. I have become much worse with my ME & FM. Your thoughts on this?

    A: This treatment really doesn’t work. I don’t know a treatment that works. The idea of chelation has made a lot of people rich in Canada and the United States. What happens with heavy metals toxins is it goes in the brain. We had some serious injury to farmers when I was working in Glasgow for a short period of time. The doctor was doing every test he could on these farmers. We found exposure to different kinds of pesticides, herbicides and metals, but nothing special. They put them through chelation and all sorts of things. There was nothing we could really prove until they died. When they died, we got their brains and the brains were so solid with mercury, pesticides and herbicides that I phoned the Mounties, our national police force, like your FBI and CIA combined, and asked, “If you wanted to murder your husband with a nice milkshake of herbicides and pesticides could you tell?” They said, “We can’t.”

    http://www.masscfids.org/resource-library/15-conference-reports/444-dr-byron-hyde-2012-fall-lecture-summary

    Glad to hear that you have finally had your sleep apnoea diagnosed this is something that Dr Mirza recommends that people are tested for, unfortunately many don’t test for it. Sleep apnoea is one of the many things that Dr Mirza recommends to be tested for that do have a dramatic effect on the immune system and could be responsible for a failure to recover from infections, see http://www.atsjournals.org/doi/abs/10.1164/rccm.200210-1226OC and http://erj.ersjournals.com/content/25/5/820.short I don’t know what type of sleep apnea you have, but be aware that sleep apnoea is often a symptom not a diagnosis, and sometimes doctors can wrongly stop looking and be happy with sleep apnoea as a diagnosis when it is a symptom of something else. See cause of sleep apnoea central type http://en.diagnosispro.com/differential_diagnosis-for/sleep-apnea-central-type-causes/11648-154.html and sleep apnoea obstructive type http://en.diagnosispro.com/differential_diagnosis-for/sleep-apnea-obstructive-type-causes/11638-154.html

    You say you have ordered a book by Dr Mirza I was not aware he had written one, if he has please let me know I would be interested in finding out more about it.

    Hope things continue to improve with the sleep apnoea treatment

    All the best
     
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    rlc wrote:


    rlc, you seem to be assuming that ME specialists do not know the information you have posted and are not doing thorough tests to exclude other conditions. While it is true that many doctors are not, most of the well known ME specialists are, and diagnose not only by exclusion but by markers that, though not officially diagnostic markers, when taken together (having excluded other illnesses) are indicative of ME.

    For instance the 2 consecutive exercise testing that has often been written about here, the presence of active viral and bacterial infections that have remained active for years or have reactivated, brain scans, gut tests and biopsies, immune dysfunction, PENE, dysautonomia--the list continues.

    From your posts it would seem that you do not believe that ME is a real condition (admittedly, I have not read all your posts). This can be troubling to those who are very sick and have indeed been tested properly to exclude other conditions.

    Best,
    Sushi
     
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  6. rlc

    rlc Senior Member

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    Hi Sushi, I’m certainly not saying that ME is not real, I’m saying CFS is not real, By ME I mean the 1969 WHO defined disease, the disease of the epidemics, but this is not CFS, it is a Neurological and muscular disease, with a known short incubation period. This incubation was found out because many of the epidemics happened in hospitals and they could accurately measure the incubation period. This short incubation period means that most of the viruses that in modern times certain sources have been trying to say cause ME such as EBV, CMV, HHV6-7 retroviruses etc, can’t possibly be the cause, their incubation periods are far too long, personally I think some of the best work on ME has been done by Dr John Richardson of the Newcastle research group, he studied ME for 45 years, this article of his is very good he explains how to test for and diagnose ME http://www.name-us.org/DefintionsPages/DefinitionsArticles/Richardson2002Guidelines.pdf

    I’m saying that CFS the disease that appears to have been conjured up by the CDC based on virtually no clinical experience or research, in what appears to be an attempt to explain away ME outbreaks at Lake Tahoe etc is not real, CFS is just a collection of very common symptoms found in hundreds of diseases with instructions not to test for all the diseases that can cause these symptoms, because it is supposed to be a disease of exclusion where all diseases that can cause these symptoms are ruled out, but this is not happening, then there is no proof that any of the proclaimed CFS patients used in research have CFS, so all the research is corrupt and useless. ME/CFS also cannot possibly exist you can’t combine the symptoms of ME with the none existent disease CFS and say it is a real illness, it isn’t.

    So don’t get me wrong ME patients are of course very sick, and the people wrongly diagnosed with CFS and ME/CFS are also very sick, in fact many of them have undiagnosed conditions that could kill them.

    My point is all patients should be tested properly to rule out other diseases one to end a lot of peoples suffering and two because you can’t possible do good research into ME if you are researching a cohort of patients that have many different conditions.

    I’m not
    Many have provided evidence that they are not doing the tests that Dr Mirza recommends. I have written about the tests that were done for the final XMRV study here http://forums.phoenixrising.me/index.php?threads/a-multicenter-blinded-analysis-indicates-no-association-between-cfs-me-and-either-xmrv-or-pmlv.19420/

    Some of the prominent CFS doctors and researchers involved were

    Harvey J. Alter, Judy A. Mikovits, Francis W. Ruscetti, Nancy Klimas, Anthony L. Komaroff, Jose G. Montoya, Lucinda Bateman, Susan Levine, Daniel Peterson, Mady Hornig, and W. Ian Lipkin they show in table one what tests they did to rule out other disease in the patients that they considered have CFS.

    If you compare it to the tests recommended in Dr Mirza’s articles you find

    There is no tests for vitamin D deficiency which is extremely common

    There is no test for celiac, which effects one in every one hundred Caucasians. 139 of the 147 patients used in this study were Caucasians!

    There are no tests for Cortisol, which means they could have missed cases of Addison’s and numerous other diseases that cause low or high cortisol.

    There are no Iron studies tests done e.g Ferritin, serum iron, Transferrin saturation etc which means they will have missed any cases of hemochromatosis a very common disease that effects one in every two hundred and fifty Caucasians. And they will have missed cases of iron deficiency, and there causes, And many other diseases that affect iron levels.

    There is no tests for B12 or Folate deficiencies which are very common causes of these kinds of symptoms.


    They have only done the blood glucose test but no mention of using up to date reference ranges, and they haven’t done the glucose tolerance test (OGTT) which means they could have missed cases of pre diabetes another very common condition,

    They say they have tested thyroid function but have not included these tests in table one. However if they used the standard TSH reference range of (0.4-5) which has been proven to be wrong and it has been recommended that the upper range for TSH be reduced to 2.5. They could have missed many cases of Hypothyroidism.


    They also do not appear to have checked for sleep apnea.

    As well as these test that Dr Mirza recommends, they have not tested ANA which means any cases of lupus and numerous other auto immune diseases could have been missed. They have also not tested for rarer disease like Mast Cell disorders, Porphyria, Wilsons, MS etc, etc, etc.

    The problem is that samples from these patients are being used for the research by the chronic fatigue initiative, and are being given out to other researchers.

    Because they have failed to tests for so many common diseases that can cause these symptoms, there is no proof whatsoever that these patients have CFS.

    So the reason why I don’t believe that this group of CFS specialist doctors and researchers consider Dr Mirza's test necessary is that they haven’t done these tests in an extremely important piece of research.

    I have also seen many people post here who have been to see prominent ME doctors and asked them if they have had tests done that Dr Mirza recommends and they have stated that they haven’t, I have also had to advise people that have had tests done by some prominent ME doctors for things like vitamin D, that the reference ranges are out of date and that their tests don’t mean that they are in the clear.

    I have also not heard any ME doctors apart from Dr Hyde claiming to have found many misdiagnosed patients or trying as Dr Mirza has to make the world aware of what tests should be done.

    So although I would like to believe that all the ME doctors are testing their patients the way that Dr Mirza is doing, the evidence that I have seen shows that many of them are not, so my advice to people is to read the articles by Dr Mirza and make sure that they have had these tests done with the right reference ranges, if that doesn’t find the right diagnosis then bear in mind that this is just a list of the more common diseases that he checks for and that other rarer diseases may have to be tested for.

    You say
    I have seen a lot of evidence that many ME specialists are not ruling out all other diseases. Many of the tests that are being promoted as tests for ME have not been replicated they are not proven science, people should be aware that some individuals and groups have patents on these tests and are making large amounts of money. Immune dysfunction like that said to be found in ME is caused by just about every one of the diseases that Dr Mirza says should be tested for; they are even caused by a bad night’s sleep. Anyone who tells someone that things like low NK cells prove they have ME needs to go and do their research properly.

    Most of the viral testing associated with ME is not backed by science high titers are found in perfectly healthy people, increased anti bodies to many viruses can also be caused by other diseases, that research suggests includes ME, this does not mean that these antibodies and the viruses that the antibodies are associated with are responsible for the persons health problems, it is the other disease that is making the body produce antibodies for all sorts of viruses. It is impossible for most of the viruses being proclaimed as the cause of ME to be the cause of ME their incubation periods are far too long.

    Two consecutive exercise tests does not prove ME, failing exercise tests are caused by a large number of different illnesses the PR article says that patients were selected using Fukuda, Fukuda is not a ME definition it does not have the symptoms of ME in it, therefore the patients were probably CFS patients which is what the research calls them and the cohort could be made up of patients with many undiagnosed illnesses. I cannot access the full Snell publication at the moment to see what if anything they tested for to rule out other diseases, but it is possible that these patients did not have many diseases that cause failed exercise tests ruled out.

    Things like POTs are caused by many different diseases see http://www.dinet.org/what_causes_pots.htm are all these ME Specialists testing their patients for things like Porphyria, Mast Cell Activation Disorders, pheochromocytoma, neuroblastoma, Pelvic ganglioneuroma, Syringomyelia, Norepinephrine transporter deficiency, Lipodystrophy, Mitral valve prolapsed, Chiari malformation, Cervical stenosis, Guillain-Barre to rule these out as causes of POTs???? Because they do cause POTs and other symptoms attributed to ME. These conditions often need multiple very specialist tests and/or imagining studies done and I’m not seeing these tests on the lists of tests that people are saying that they are getting from ME specialists. PENE is just a list of symptoms found in many different diseases or combinations of diseases, it does not prove someone has ME.

    Some of these things may be found in ME patients as well, but they do not prove that someone has ME.

    The point that I’m trying to make is that many of the tests that are being propagated by a small group of individuals as proof of ME, have not been scientifically replicated, and the statements made about these tests have often already been proven wrong or the methodology used is very easy to prove to be flawed. It is an act of faith to believe what some people are saying about these tests, it is not based on replicated science. Many of the people promoting these tests have patents on them and are making very large amounts of money. If people want to believe that these tests prove ME that is their choice, but they should be aware that many of them are not based on replicated science just as XMRV tests weren’t. These tests are also often very expensive, and can if people believe that they prove they have ME lead to people not getting more extensive testing to rule out other illnesses, which has the potential for disastrous consequences.

    If people read the older scientific Medical literature and the medical reports from the epidemics, they will see that ME used to have very different symptoms then most people are trying to say that it has today. Disease do not change their symptoms because people say they do. What has happened is that people have been saying that CFS is ME which it isn’t and saying that the symptoms attributed to CFS are those of ME they are not, some have combined the symptoms of CFS and ME and have called it ME/CFS or ME it is not ME. The reality is that almost all the research that has been done since 1988 has not been done on ME patients it has been done on mixed cohorts, it is therefore meaningless and tests or treatments recommended from studying mixed cohorts are often worthless in relation to ME.

    Because so much of what is being said about ME these days is based on results of studying mixed cohorts, it is very hard to find out what ME even is, if people want to understand what ME is and if it is possible that they have it, then I recommend reading the pre 1988 and CFS research, links to a lot of it can be found here http://forums.phoenixrising.me/index.php?threads/historical-me-research-literature-and-related-information.10282/ I recommend reading the above article by John Richardson he has also written a book based on his 45 years of research with the New castle research group if people are interested it is available here http://www.amazon.com/Enteroviral-Mediated-Myalgic-Encephalomyelitis-Syndrome/dp/0789011271

    Although people often say that Dr Hydes work is his theories, there is little new to this field that he has added himself, his work is based on the medical and scientific research into ME from before CFS was invented such as that done on the epidemics, he studied with Dr John Richardson, his saying that enteroviruses is the most likely cause comes from research by the likes of Dr John Richardson and Dr Bernadette McLaughlin, his work on the use of SPECT scans comes from the research of the likes of Jay Goldstein MD. Dr Ismael Mena and John Richardson etc. I recommend people read this work of his http://www.hfme.org/Other/DefinitionBooklet_Sept_2011.pdf and consider reading his books.

    I hope this clears up any misunderstandings about what I mean.

    All the best
     
    golden likes this.
  7. SanDiego#1

    SanDiego#1 SanDiego#1

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    Ric the book I ordered is the one on Vit D Physiology on Amazon and also his info on Dr. Holick. Maybe it is a book review. When you say everything checks out normal then go to vitamin D. How do we know we are being checked out normal? None of may Dr. agree with each other on anything. Particularly if they are in the same vicinity of each other.
    Much less on tests ranges. The sleep Apnea machine (once I get the mask situation straightened out) has helped me as much as anything. I had to ask for this test from my ENT. Also Environmental Dr. ran tests and my Adrenal were not functioning at all-same on Thyroid. She has me on low Adrenal compounded formula, compounded Vit A and low Thyroid. Much, Much improved already. Do appreciate your sights to go to as I keep a file. The best info I have found was from another patient-Recovery from Chronic Fatigue by Bruce Campbell PHD-Stanford. It is short, to the point
    and doesn't exhaust you reading it. I have had to ASK, BEG- INSIST on every tests I have received -except from my Environmental Dr.

    BE BRAVE-
    IF YOU CAN'T BE BRAVE-
    PRETEND TO BE-
    NO ONE WILL KNOW THE DIFFERENCE-

    Works for me.

    San Diego #1
     
  8. rlc

    rlc Senior Member

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    Hi San Diego, RE

    If this is the book you mean? http://www.amazon.com/Vitamin-Physiology-Molecular-Applications-Nutrition/product-reviews/160327300X the book is written by Dr Holick, the review is by Dr Mirza. There is a short article by Dr Mirza on the British medical journal site if you are interested in reading it, here http://www.bmj.com/rapid-response/2011/11/02/vitamin-d-deficiency

    Most patients are in the same awful situation that you explain finding yourself in, they are not getting the tests they need to rule out other diseases, and even when they do they often have doctors who don’t have a clue about out of date reference ranges. Which leads to the correct diagnoses being missed. Dr Mirza’s orginal articles are about the faults in the CDC and NICE guidelines, if the CDC and NICE would update their guidelines and include these tests with correct reference ranges, and it became compulsory for doctors to do these tests before diagnosing people with CFS it would largely solve the problem.

    I don’t know what testing you had for adrenal function but Adrenal insufficiency can be extremely serious, have you had an ACTH stimulation tests? Many other tests then just Cortisol are needed to diagnose the cause of AI if the cause is not found it can have very bad consequences! This article explains some of the extra tests that are needed http://suite101.com/article/adrenalinsufficiency-a1543 If your interested Dr Mirza explains his recommendations on correct dosages for treating subtle thyroid problems in this article http://www.bmj.com/rapid-response/2011/11/02/unveiling-mysteries-thyroid

    I appreciate that many people do not like me saying anything that is critical of prominent ME doctors. However I’m just sticking to the facts that I have seen, as I pointed out to Sushi the prominent ME doctors that did the testing in the final XMRV study, in the lists of tests that they said they had done, failed to test the patients for just about everything doctor Mirza recommends, failing to test for common things like celiac and vitamin D deficiency and B12 deficiency is in my opinion totally unacceptable. On this page http://forums.phoenixrising.me/index.php?threads/i-am-booked-in-to-see-prof-de-meirleir-in-january.20651/page-4 Snowathlete has listed the tests that he got from KDM Kenny De Meirleir

    Missing from these tests are many tests that Dr Mirza recommends, and reference ranges are out of date.

    Tests not done are

    Glucose

    OGTT (Oral Glucose tolerance test)

    B12

    Homocysteine

    MMA

    Cortisol

    Transferrin saturation

    Celiac tests

    T4

    The reference range that De Meirleir is using for TSH is the old one, he uses 0.27-4.20 Dr Mirza recommends 0.3-2.5

    Other tests for conditions that can cause CFS symptoms have not been done, such as Folate, Calcium, PTH, ACTH, Aldosterone, T3, LH, FSH, full iron studies, Lead, HIV, Hep C, TB, Brucellosis, syphilis, there are no tests for rarer diseases like Porphyria, mast cell disorders, Wilsons disease etc, etc.

    Many of the tests that snowathlete has paid for are of no use in diagnosing anything, they just show that people are sick and give no clue as to what may be the cause.

    The end result is snowathlete has spent thousands of dollars and has, not had common diseases that could be causing his suffering ruled out.

    I have heard people say that KDM is cheap and only charges a small amount for the appointments, but you have to pay a lot to get testing done, a large number of the tests that he does go to R.E.D laboratories, Kenny De Meirleir and Dan Peterson are listed here as partners in R.E.D laboratories http://cfsmirror.blogspot.co.uk/2012/05/profit-and-loss.html with many of the tests that KDM has been doing on patients, he has his name on the patents for them http://www.google.com/?tbm=pts#bav=on.2,or.r_qf.&fp=8aa7cfb78ec7be4e&psj=1&q=kenny+de+meirleir&tbm=pts these kinds of tests often have not been independently replicated by other scientists and proven to be scientific facts, and could turn out to be useless.

    What I’m trying to say is that people should be cautious, many people have said that the ME specialists must be doing the tests that Dr Mirza recommends, I have not found evidence of this. This concerns me because it is very important that people get the right diagnosis. Unfortunately a lot of people don’t have access to decent medical care, but maybe by my posting information about the tests that Dr Mirza recommends it may help some people as it appears to have helped Goodness to ME.

    I hope you continue to make good progress with treatment!

    All the best
     
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  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    snowathlete

    What you don't realize is that most patients who finally make appointments with a prominent ME specialist have already done the tests you list as "missing" and bring them to their appointments to be added to their file. I personally brought all those tests (recent ones) and (credit to the specialist) he did not repeat them and incur more expense for me.

    Also, you said,

    Pardon me if I'm wrong, but I have seen nothing in your posts to give me confidence that you have the knowledge to make such a statement.

    And, you said,
    This is not the reference range that Prof. De Meirleir is using, it is the range used by a commercial lab in Brussels (not a lab that he has any affiliation with--he uses many labs). Prof. De Meirleir himself quoted to me a reference range for TSH that was much narrower than that quoted by the lab (almost the same as the range Dr. Mizra uses).

    And you said,
    I have had many of the same tests done in the US and the charges were approximately 1/3 rd more. I personally am very glad that noted ME specialists have an interest in laboratories--this is the reason why such labs are willing and able to develop tests that I believe are useful to ME patients.

    Do I care if they are partners in these labs? No, not in the least. Rather, having medical specialists behind laboratory testing is important to me--if they receive any benefits from the lab, fine with me. Someone will always receive benefits from a laboratory. I would rather it be medical practitioners who are using these benefits to further research.

    Sushi
     
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  10. SanDiego#1

    SanDiego#1 SanDiego#1

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    Ric I did pull up info on tests for Adrenal and I am going to forward to my Environmental Dr. I have no problem with
    anyone being negative about any of the FAMOUS CFIDS DR. I am very critical as I have spent year with a disinterested prominent one that only made me worse. As he said I was in Heart Failure. I am copying your test to my now Dr. or an Endocrinologist.If I can find one that says I am not trying to combine conventional Med with alternative. SO WHAT???? I have already ordered the book you mentioned. May be too technical. but sounded interesting.
    I agree we should be cautious. Going from Dr. to Dr. with no results or worse results-wears us out.The thing is I have good insurance and will pay what they won't cover.

    BE BRAVE-
    IF YOU CAN'T BE BRAVE-
    PRETEND TO BE-
    NO ONE WILL KNOW THE DIFFERENCE.

    SAN DIEGO #1
     
  11. rlc

    rlc Senior Member

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    Hi Sushi, RE


    I suggest you should research the tests and find out what they mean, and if the tests have been replicated and are valid science. I don’t have the time or energy to lay out all the research behind every single point I make, if people chose to not take a statement on face value then they need to do the research as I do.

    Almost the same is not the same.

    This is your personal opinion; other people may form a different opinion and have the right to all information so they can make informed opinions. I’m only providing information it is up to other people to make their choices.

    All the best
     
  12. rlc

    rlc Senior Member

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    Hi San Diego, re

    Great idea to forward the info to your doc, I hope they can organize testing for you soon, wonderful that your insurance company will pay for tests. Sorry to hear that you had such a bad time with a prominent CFIDS doctor, if they said you were in heart failure, did they send you to a cardiologist? I hope you enjoy the book, and that more testing will find what is going on.

    It is such a difficult situation for so many people to try and find out what is wrong with them, if only governments would put out proper guidelines of what to test for before people can be diagnosed with CFS this whole messy situation could be avoided.
    All the best
     
    SanDiego#1 and roxie60 like this.
  13. Goodness to M.E.

    Goodness to M.E.

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    Hi Ric, correct me if I'm wrong, but it was you who put together the Dr Mirza article that I originally posted on this thread?
    All I can say is thank-you.
    In locating this article, it has stopped wasting my time, energy and money by the 'tail chasing the dog'.
    I no longer make any reference to CFS as there is no such thing, and believe people need to omit it from their language as it only feeds the confusion.
    One either has M.E. or something else and this tread info has now provided us with the tools to do this.
    The challenge is finding a supportive doctor in the first instance.
    Like cancer, M.E. can be terminal and /or a bugger to live with but, lets not waste our precious time for daily joy by the tail chasing the dog!
    Like most things that are controlled by others, the health systems being one, I dont have the resources for the 'David and Goliath' either.
    In saying this, the 'article' for testing goes a long way in reclaiming the control and quality of the medical treatment we receive and in turn, some accountability from the system, and piece of mind that we are doing our best within a system that has no clue!
    However, together and individually we can educate them by the continuity of driving our diagnosis process by making available this article to commence the process, 'the ripple effect' (maybe we need a new thread to document our medical experiences when implementing the insistence that our doctors undertake these tests and have the the new ranges incorporated in the test reporting with our individual doctors...
    People with M.E. are sick people, (I have a sister with terminal breast cancer and her ability to live an active and social life with a plethora of support services, far out ways my hermit existence) but that's life!
    Our level of unwell-ness is dependant on the free-will of the disease and then on a good day, how we choose to use our resources well! (energy) there are no miracle cures money can buy, and no magic wands that doctors have (they can't even get their own act together regarding this M.E. illness (well not since the 80's) so no wonder we're all struggling to make sense of it, and unfortunately I feel that in the end, it will be controlled by the 'BIG PHARMOS' who have the money and power to print 'their' illnesses as they choose and pay for the hired help to make this happen.
    Ric, can you post for me the new ranges as am having trouble locating, thanks...
    Our only control is to support each other as we do and put ourselves first when needed, as would be expected of any other very sick person. take care all, what an amazing bunch of generous and caring people you all are, GM.E.
     
    SanDiego#1 likes this.
  14. roxie60

    roxie60 Senior Member

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    I'm a very sick person, have similar experiences as you describe below but I dont have ME, the only dx I have ben given is I have chronic fatique and fibro (and I not entirely sure of that).

    People with M.E. are sick people, (I have a sister with terminal breast cancer and her ability to live an active and social life far out ways my hermit existence) but that's life!
    Our level of unwell-ness is dependant on the free-will of the disease and then on a good day, how we choose to use our resources well! (energy) there are no miracle cures money can buy, and no magic wands that doctors have (they can't even get their own act together regarding this M.E. illness (well not since the 80's) so no wonder we're all struggling to make sense of it, and unfortunately I feel that in the end
     
    Goodness to M.E. and anna8 like this.
  15. SanDiego#1

    SanDiego#1 SanDiego#1

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  16. rlc

    rlc Senior Member

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    Hi Goodness to ME, yes that’s right I did write the article, I had posted Dr Mirza’s articles and some people seemed to have trouble understanding and believing them, so I put together links that explained in more detail what Dr Mirza was saying and tried the best I could to explain what he meant in a way that would hopefully help people. It is so nice to get feedback from you saying that it has been helpful to you.

    I agree that these articles by Dr Mirza have the potential to save people a lot of time and energy and suffering and to quickly find out what is wrong with them, many people spend years going from one doctor to the next and the conditions that Dr Mirza say should be checked for are often missed by many Doctors.

    I think it also can help people a lot to read what he is saying that CFS is not a real disease, it’s a Myth. It was invented by the CDC, on the basis of almost no clinical experience or research. It is just a collection of very common symptoms found in hundreds of conditions with instructions not to test for over half the diseases that can cause these symptoms.

    ME as in the 1969 WHO defined disease, that was defined based on the experience of a large number of epidemics with similar characteristics is obviously a real disease, but it is not CFS, it is a rare neurological and muscular disease with a known medically recorded incubation period, the symptoms of which have more in common with those of MS and Polio and are not the same as CFS. People should bear in mind that people have recovered from ME, but ME patients can have other medical conditions like those that Dr Mirza mentions, most of which effect the immune system and therefore people’s ability to heal, if they are found and treated it could greatly improve an ME patients quality of life and possibly lead to healing.

    I do agree if we stick together and we can promote knowledge of the testing that Dr Mirza recommends and create a ripple effect, it could help a lot of people. As I pointed out in posts in this tread to Firestormm, people are making very large amounts of money out of CFS and have a lot of prestige at stake. It is not necessarily in their best interests to turn round and say CFS is not real, just test people properly and the right diagnosis will be found.

    But there are two very powerful groups that it is very much in their best financial interests to promote correct testing with the right reference ranges to get the right diagnosis for people. One of these is insurance companies, they do not want to be paying out money to people for the rest of their lives because of CFS. It costs them millions of dollars, if people sent Dr Mirza’s articles to the heads of insurance companies, I could see them including his testing in what they demand people get before they will pay out for people diagnosed with CFS. Sure their motives are most likely to be money not compassion, but that is the way of the world at the moment, if it gets people the right diagnosis who cares? Some of the insurance companies are multibillion dollar organizations they can have considerable influence over government policies.

    Another avenue is the government departments in charge of paying sickness benefits in countries round the world, they are paying out fortunes to people with CFS diagnoses who could often be cured if they were tested properly and their right diagnosis found. I could see these departments being very interested in information that could save them millions of dollars.

    I think people here are often extremely kind and caring, and can struggle to realize what a nasty world it can be, many of the people and organizations that could help are not necessarily motivated by compassion, they are often motivated by money and prestige, so it is a matter of playing the game, and identifying who has something to gain by getting people correctly tested, and giving them the information and pointing out to them just how much they could gain by doing it. Sadly this is the unfortunate reality of how the world works in the majority of cases.

    You are right in the end it will be controlled by the likes of Big Pharmos, they are the ones that will ultimately solve the problem of ME. The problem at the moment is that we have all these CFS patients who really have all sorts of other known diseases mixed up with the ME patients. This leads to their being no real science being done because of mixed cohorts in research. Some drug companies are making money pushing various treatments to CFS patients which doesn’t really help. But the problem for the big pharmos is, a lack of good science means a lack of dollar signs.
    If the wrongly diagnosed CFS patients can be diagnosed with the diseases they really have, and are removed from research. Then real research can be done on ME patients, when this finds the cause the Big Pharmos will suddenly become are best friends, they will see that there is a clearly defined market with a known cause, all they have to do is develop a treatment and maybe a vaccine and they will be rolling in it. All the Big Pharmos will suddenly be spending a fortune to develop these drugs which will in the end help the patients. But while we have all the misdiagnosed CFS patients mixed up with ME patients in research, we can’t get any real science to find the cause, so the clear cut market with big dollar signs attached to it is not there for the big Pharmos so they just focus on other things like treatments for cancer were they know they can make billions, unfortunately at the end of the day it’s all about the money!!

    Thanks for reposting my article hopefully we can get more people to get the ripple effect going.

    All the best
     
    SanDiego#1 likes this.
  17. rlc

    rlc Senior Member

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    Hi Goodness to ME and San Diego, these are the new reference ranges mentioned by Dr Mirza

    TSH new reference range (0.3-2.5)

    About this Doctor Mirza says

    “1. True biological reference range of TSH should be 0.3-2.5. If TSH is > 2.5, especially when Thyroid Peroxidase titer is > 10, the patient might have evolving hypothyroidism. If you go by your laboratory's reference range of 0.5-5, of course you will miss the boat, and resort to the waste basket diagnosis of CFS.” Reference http://www.bmj.com/rapid-response/2011/11/01/myth-chronic-fatgue-syndrome

    Explanation for anyone who doesn’t know this, in medicine the symbol < means less than and > means more than.

    Warning different countries can use different units of measurement so make sure that your tests results are in the same unit of measure that Dr Mirza recommends, if it is not then if you google convert whatever unit of measure your test is in to whatever unit of measure Dr Mirza recommends and you will find the answer, e.g 1ng/ml equals 2.5 nmol/L

    Evidence for using the reference range Dr Mirza recommends can be found here http://jcem.endojournals.org/content/90/9/5483.long A Lot of Doctors don’t know how to treat subtle thyroid problems, Dr Mirza gives recommendations of how much medication to use in this article http://www.bmj.com/rapid-response/2011/11/02/unveiling-mysteries-thyroid

    The fasting plasma glucose should be <100 mg/dl (5.5 mmol/l).

    Postprandial plasma glucose should be <140 mg/dl (7.7 mmol/l)at 30-minute, 60-minute, 90-minute, and 120-minute. (This is for the OGTT test)

    Dr Mirza says

    “2. Check glucose tolerance test on people who are obese, have family history of diabetes, and have nocturia, or polyuria. The fasting plasma glucose should be <100 mg/dl (5.5 mmol/l).Postprandial plasma glucose should be <140 mg/dl (7.7 mmol/l)at 30-minute, 60-minute, 90-minute, and 120-minute. If you do not use these diagnostic thresholds, you will miss the diagnosis of diabetes, or impaired fasting glucose, or impaired glucose tolerance. The latter 2 are also called pre-diabetes. Pre-diabetes and diabetes both can cause severe fatigue if remained undiagnosed. The mechanism is through loss of glucose (body's fuel) in the urine (Glycosuria>”

    And here http://www.bmj.com/rapid-response/2011/11/01/chronic-fatigue-syndrome-nice-and-cdc-miss-boat

    He says

    “Many of these have impaired fasting glucose or impaired glucose tolerance (IGT). These pre- diabetic conditions cause fatigue via glycosuria. Fasting glucose measurement is not nearly sufficient to detect early glucose intolerance. A 2-hr glucose tolerance test (OGTT) is abosoluitely necessary to detect IGT defined as plasma glucose of > 130 from 30 minute- 120 minute during OGTT.”

    The scientific information on why Dr Mirxa recommends these reference ranges can be found here http://spectrum.diabetesjournals.org/content/17/1/51.full

    B12 >300 pg/mL (>221 pmol/L), or even higher.

    Dr Mirza says

    Check vitamin B12 level. The cutoff reference range is >300 pg/mL (>221 pmol/L), or even higher. Most laboratories in the US have the reference range at 160 or 180, erroneously low. If in doubt, check homocysteine level, the reference range of homocysteine should be between 5 and 15 µmol/L (some authorities use 10 as cutoff). If you rely on outdated reference range, you miss the boat and fall in the trap of CFS.

    And here http://www.bmj.com/rapid-response/2011/11/01/chronic-fatigue-syndrome-nice-and-cdc-miss-boat

    He says

    The reference range of vitamin B12, at least in the USA is outdated and new reference ranges should be implemented (300-1000 pg/ml). It is very common to miss mild vitamin B12 deficiency without checking either homocysteine or methylmalonic acid or both. The latter 2 metabolites would be both elevated when serum B12 is insufficient. Even if B12 level is 300 pg/ml but homocysteine or methylmalonic acid are elevate, a diagnosis of B12 insufficiency should be made and the fatigued patient must be treated. Vitamin B12 is a very common cause of fatigue, malaise, dizziness and vertigo in people labeled with the diagnosis of CFS.

    Information on B12 and the right reference ranges can be found here http://www.sah.org.au/assets/files/PDFs/Pathology%20PDFs/Vitamin%20B12%20Update_San%20Dr.pdf

    25 hydroxy vitamin D 32-100 ng/ml.

    Dr Mirza says

    3. In the Northern regions of the United States and Europe, vitamin D deficiency is rampant. In some cities in the United States 70% of the population in the winter might have vitamin D deficiency (such as Boston). Vitamin D deficiency is responsible for calcium and phosphorus absorption (among other host of other functions). Lack of phosphorus means lack of ATP in the body, which means that you feel tired. I have helped thousands of victims of this type of chronic fatigue through vigorous vitamin D supplementation. Not to mention that vitamin D deficiency causes also severe myalgia and bone pains (osteomalacia), often missed since vitamin D deficiency is not on the list of differential diagnosis of fatigue, including (tragically) the CDC list. Failure to recognize vitamin D deficiency leads you to misdiagnosing patients as CFS and/ or fibromyalgia. Nearly 70% of patients with fibromyalgia have vitamin D deficiency, i.e. misdiagnosed. The true reference range of 25 hydroxy vitamin D is 32-100 ng/ml.

    Dr Mirza’s recommendations for Vitamin D reference range are based on the work of Dr Holick which is explained here http://www.altmedrev.com/publications/10/2/94.pdf Be aware that vitamin D levels of 32ng/ml is the barest minimum acceptable levels and that levels will fall very quickly if sun exposure and/or supplementation are not maintained.

    Warning people should have their Calcium levels checked before taking vitamin D, as there are a few diseases that it is bad to take vitamin D with, these all cause high calcium and will be detected by testing calcium

    Other co factors may be needed to help the body absorb vitamin D see http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-and-other-vitamins-and-minerals/

    People can experience what they think are side effects from vitamin D, however they are often caused by a magnesium deficiency info here http://www.naturalnews.com/029195_magnesium_vitamin_D.html

    Dr mirza mentions testing for the very common disease Hemochromatosis using Transferrin saturation but doesn’t go into much detail, I have experienced that the transferring saturation reference range is often very different in different labs. How Hemochromatosis should be diagnosed is explained here http://www.ironoverload.org/information/diagnosis-pt1.html

    Many doctors do not get training in diagnosing Adrenal insufficiency and how to interpret Cortisol tests and what other tests are needed, unless they are an endocrinologist, this article explains it very well, see http://suite101.com/article/adrenalinsufficiency-a1543

    “When adrenal insufficiency is suspected, blood for an AM cortisol level along with an ACTH level and an aldosterone level is drawn. With a normal range of 9-25, mcg/dl, blood cortisol levels higher than 19 generally rule out the possibility of adrenal insufficiency. Levels lower than 3 suggest adrenal insufficiency, and levels between 3-19 are indeterminate. In primary adrenal insufficiency, the blood ACTH level is high. A low cortisol with a high ACTH is sufficient to diagnose primary adrenal insufficiency; a low ACTH with a low cortisol level is seen in secondary adrenal insufficiency. Further tests can be used to differentiate pituitary from hypothalamic causes in secondary conditions.

    Regardless of the cortisol level, if adrenal insufficiency is highly suspect, an ACTH stimulation test is performed. In this test the patient is given an injection containing cosyntropin, a synthetic form of ACTH. Cortisol levels are tested prior to administering the drug and at 30 and 60 minutes after the ACTH is given. In adrenal insufficiency the rise is blood cortisol levels is negligible. A longer version of the test can be used to determine if abnormal results are due to pituitary or adrenal disease.”

    People should also be aware that they have to be eating gluten containing products before doing celiac blood tests or they are likely to get negative results when they may really have it, endoscopic biopsy is the best test for celiac.

    People should also be aware that a lot of doctors don’t understand how to interpret results in regards to diagnosing Parathyroid disorders, how it should be done is explained here http://www.parathyroid.com/diagnosis.htm

    And that Lupus may need many tests to diagnose it properly this is explained here http://www.lupuscanada.org/english/living/1000faces_sle1.html

    Hope this helps

    All the best
     
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  18. roxie60

    roxie60 Senior Member

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    Definitely helps, thx
     
  19. rlc

    rlc Senior Member

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    Hi all, in post 223 here http://forums.phoenixrising.me/index.php?threads/fatigue-is-not-a-disease-unger-responds-advocates-launch-petition.23688/page-12 I put a whole lot of information that people may find useful in finding the right diagnosis, most of this information has been covered in this tread, but it has a few other resources that people may find helpful so I thought I would repost them here to try and keep useful information all in one tread.

    “The diseases that Dr Mirza states should be tested for are only some of the more common diseases that can cause the symptoms of CFS. Additional testing may be required to diagnose other conditions that cause the same symptoms as CFS.

    There is diagnostic software available to doctors, to help them correctly diagnose patients. If you have a helpful doctor, you can ask them is they will use Isabel diagnostic software to help find the correct diagnosis, Doctors can use this for free, as it has a ten day free trial, information on it can be found here http://www.isabelhealthcare.com/home/free_trial

    Diagnosis Pro, Diagnostic software is free to use by anyone, there is debate however if it is as good as Isabel diagnostic software. It will however provide lists of the possible causes of failed test results and symptoms. It is available here http://en.diagnosispro.com/ Instructions on how to use it can be found here http://en.diagnosispro.com/diagnosispro_help/generate_a_differential_diagnosis_list/

    If it does come up with alternative diagnoses for people, they can then take the information to their doctors and ask them to investigate it.

    Information on what failed blood tests may mean as well as being provided on the Diagnosis Pro site, is also available on the Lab tests online site http://labtestsonline.org/

    It is advisable for patients to get copies of all tests that have been done on them, as they may be able to see something that has been overlooked, and then question their doctor about it.

    The Right Diagnosis site also provides help for making a correct diagnosis. It has Assessment questionnaires that will help people to find the correct diagnosis for a large number of symptoms, here http://www.rightdiagnosis.com/checklist.htm And a Symptom Checker that allows multiple symptoms to be combined and will tell people the likely causes of these symptoms http://symptoms.rightdiagnosis.com/

    Information on any disease that patients may wish to look up is available online at reputable medical sites, such as Emedicine. http://emedicine.medscape.com/

    However do not self diagnose, always check information with a medical professional.

    The Right Diagnosis site also contains large amount of information to help patients with their interactions with Doctors, such as

    Steps to take to get the most out of a doctor visit http://www.rightdiagnosis.com/diagnosis/steps-doctors-visit.htm

    What to tell your doctor about your symptoms http://www.rightdiagnosis.com/diagnosis/tell-symptoms-doctor.htm

    What questions will the doctor ask about your symptoms (and why)?http://www.rightdiagnosis.com/diagnosis/questions-doctor-ask.htm

    What does your doctor do in a physical examination? http://www.rightdiagnosis.com/diagnosis/doctor-physical-examination.htm

    What questions should you ask the doctor about a symptom or diagnosis? http://www.rightdiagnosis.com/diagnosis/questions-ask-diagnosis.htm

    What questions to ask the doctor about the treatment http://www.rightdiagnosis.com/diagnosis/questions-ask-treatment.htm



    Information on prescription medicines and possible side effects can be found here http://www.drugs.com/

    If patients are on multiple medications, they can easily check for harmful interaction that doctors may have overlooked by using the drugs.com interaction checker found here http://www.drugs.com/drug_interactions.html

    Many alternative medicines can have very serious side effects and interactions. Information on what the potential complications for almost all Herbs and Supplements can be found on this page http://www.nlm.nih.gov/medlineplus/druginfo/herb_All.html


    Hope this helps

    All the best
     
    roxie60 and SanDiego#1 like this.
  20. SanDiego#1

    SanDiego#1 SanDiego#1

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    Ric- Another great informed post. The trick is to get a Dr. to even look at any tests you take into him. I actually had a Gastro Dr. dismiss me and said he preferred to do is own testing. I said "will you t least look at these" He said No-they gave me back my co-pay.i had been going to this Dr. for 10 years. Another told me "Why would you go and let someone else do these test s, when I have 600 Dr. in this facility that can do them"? The tests were from an infectious
    disease Dr.They had no one of his caliber or specialty to do these particular tests. The infectious disease Dr. has since passed away. I am very outspoken with my Dr.s I can't imagine how you are treated if you weren't..
    However , I intend to pull up all the tests you have listed.

    Thanks you for all your time and effort.

    San Diego #1
     

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