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Neuropathy Pain

Discussion in 'Peripheral Neuropathy' started by soxfan, Mar 26, 2012.

  1. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    Hi rlc, I completely agree that diagnostic criteria, especially the broad ones, frequently result in misdiagnosis. I also agree that something like 90% (Mirza's figure) with long term chronic fatigue do not have ME. This is also shown in comparing the Oxford definition to Fukuda or CCC. The prevalence rate jumps an order of magnitude.

    However even Mirza cannot diagnose a number approaching 10%. Since he does not diagnose ME, he probably wont diagnose them, ever. ME has the cardinal symptom of PEM/PENE. There is some question of whether or not this occurs in post cancer fatigue or in Multiple Sclerosis, but aside from that the presence of PEM/PENE is not found in any other condition I am aware of. (However I am beginning to suspect chronic folate deficiency might, just might, be another.)

    None of his alternative diagnoses explain PEM/PENE. None. So he does a good job of diagnosing potential misdiagnoses, for the most part, but he then can do little for the remainder.

    There is a HUGE mistake in his reasoning though. One which Fukuda himself wrote about long ago (in relation to CFS of course, not ME, this was in an article post-1994, but I do not recall the name of it). Someone can have alternative diagnoses on the exclusion list by the bucketload and still have ME.

    Let me give you an example. HALF of us have obstructive sleep apnoea, often undiagnosed. Yet they are still considered to have Fukuda CFS (this was not ME research). HALF of those do NOT respond to any conventional apnoea treatment. Go figure.

    An exclusionary diagnosis is only valid if it fulfils two criteria:

    1. It explains the symptoms ... all of them, not just fatigue. It is possible to use multiple diagnoses to do this however.
    2. Treatment of the condition remits the symptoms. If they remain, its NOT an exclusionary diagnosis.

    I have type 2 diabetes (highly atypical though), borderline haemochromatosis and very severe obstructive sleep apnoea. NONE of them, even in combination, explain my symptoms. Nor do other potential exclusionary diagnoses I have had over the years.

    An exclusion list has to be applied rationally. It is not a rubber stamp. Many doctors and even researchers do not understand this.

    I was discussing ME with an ME researcher many years ago (private conversation) when I mentioned that many with endocrine conditions might be misdiagnosed and not being treated successfully. He didn't think so. So he toured the wards of a VERY big hospital, with a large population of patients with endocrine disorders. A good percentage were being treated "successfully" but still complained regularly that their symptoms were unabated. They were being ignored. Go figure. This is only anecdotal of course, and I haven't told you the name of the researcher or hospital ... and I wont. It was a private conversation.

    Bye, Alex
    ahimsa likes this.
  2. soxfan

    soxfan Senior Member

    North Carolina
    Hi Ric-

    Thanks for writing down your thoughts on my recent posts. I don't want to make this too long but want to put into a very short summary what has gone on with me in the past 8 years.
    2004- first symptom was pain and cramping in my foot and calf which lasted 2 weeks unabated. Two weeks later I had a 24 hour bad flu in which I was sent to the hospital for blood work. Very low WBC and extremely high liver enzymes. Doc said some type of infection. Two weeks after that I woke up like I had been hit by a bus and couldn't bend my elbows or hands and fingers.
    2005-Given the diagnosis of CFS with no treatments. I still had severe exhaustion...neuropathy pain in L Calf and foot... unrefreshing and disturbed sleep and other minor symptoms. But during this time I could also still work 30 hours a week and run 5 times a week..go figure.

    2006-Went for a second opinion and he tested me for Lyme ( I had some bands + and IND) Elevated Bartonella titer. Started on oral abx with no results. Went on IV Rocephin in Oct 2007 and started improving within 4 weeks. By January 2008 I was back to work full time and running 2 miles daily. I felt 85 percent normal. My sleep was great as well. Unfortunately I had to stop the Rocephin after 6 months because of gallbladder issues. Within 8 months of that I started sliding backwards again.
    2009 I quit all antibiotics and decided to do the best I could. At this same time I did go see and endocrinologist who took me off cortef (15mg) and lowered my thyroid meds. For me that was the start of even more decline. I changed endocrinologists and he agreed that I DID NOT need cortef. So I stayed off it.

    2010 I go back to my original doctor from 2006 and he immediately starts me back on cortef and anti-viral. So today I am still with him and I just raised my cortef to 7.5 mg daily in the hopes of stopping my adrenaline surging at night. I am also on Bactrim and Minocycline for Bartonella. I am taking these 2 because I recently had a paralyized vocal cord and within a week of started these abx it started to clear up after 6 weeks of being unable to speak.

    So to summarize things The neuropathy pain was my first symptom. It resolved completely while on Rocephin along with the chronic fatigue and sleep problems. Now today I have the neropathy pains...chronic fatigue...and very disturbed sleep.

    I do not want to go to any more endocrinologists as they only believe in the blood cortisol testing. Also they go only by TSH normal range. The doctor I am seeing now takes care of the cortef and thyroid dosing so I am all set on that.

    I do want to say that whatever happened to me in 2004 was an infectious attack on my body. Since no other testing was done except for the blood test which showed I did have some type of infection. No Lyme tests or Viral tests etc...were done. I was basically told I was depressed....

    I also want to let you know that during the first 3 years of my illness I was still able to work my regular hours and continue to run. That all came to an end when I had to quit the Rocephin. I still work part time but haven't run in 4 years.

    I agree that my high EBV and HHV6 levels don't mean much in my case. Even though I was on anti viral for a short time the side effects were too horrible to continue. I don't believe my symptoms are from those.

    Thanks again for your long in dept post and I always find what you have to say extremely interesting. I still believe I must have some type of infection going on to cause the sleep disturbance/unrefreshing and the chronic fatigue/nerve pain. I say that because I didn't have thyroid problems in the beginning. It happened 3 years later. I never get sick either. My last cold was in 2008 the year I felt best!

    I hope you can understand this and I haven't written it too chopped up. I am getting ready for work but wanted to reply to your post. If you have any other ideas I would love to hear them!

  3. rlc

    rlc Senior Member

    Hi Kim, it certainly sounds like the start was infectious but it can be hard to tell, low WBC can be caused by a lot of things including adrenal problems, it may be both or maybe the infection has damaged the adrenals? If you have improved when taking antibiotics on several occasions, it would strongly imply you have a persistent infection, the question is which one, it may be Lyme but there are many possibilities. There are infections that can damage the adrenals and thyroid, Im not aware of any proper scientific research that says Lyme is one of these. All of the meds you have had for Lyme also treat fungal infections and fungal infections can cause adrenal damage. Or maybe you have three different things going on? The reason why Im a bit sceptical of it being Lyme apart from the fact the tests are unreliable is that in proven cases of Lyme with a tick bit, bulls-eye rash and failed tests to confirm the diagnosis the shorter Antibiotic treatment works and it is cured, so why does long term treatment in some people without a 100% confirmed diagnosis not work? Is it because they dont have Lyme? Its a very controversial subject, It is possible that the infection you have isnt Lyme so the antibiotics are not the right ones for it and the infection is only being suppressed by the antibiotics and then bouncing back as soon as the treatment is stopped?

    Dont get me wrong I do not recommend going to see an endo who is going to just test TSH and Cortisol then treat, it is completely the wrong thing to do, a lot more testing is required to correctly diagnose, I would recommend you run a mile from any endos like that.

    The reason I thought of Dr Mirza for you is he isnt that kind of endo, and I have read articles of his where he is stating that this kind of approach is very wrong, and he has also stated that the standard treatment approach is very wrong for some people. The other thing is he is also a specialist in Internal Medicine and because he is an assistant professor of it, it means he is a very good one. Internal Medicine specialists train in finding all the rare diseases that other doctors dont know about, they are the ones that specialise in working out all the difficult cases that the other doctors cant work out. So he might be able to work out exactly what is going on with you.

    Its just a thought that he might be a good person to go to for a second opinion, as all your other doctors see to be giving you very contradictory diagnoses and treatment, and none of them seem to be able to give you an accurate diagnosis for all your problems.

    All the best
  4. rlc

    rlc Senior Member

    Hi Alex3619, before going into the other stuff something important jumped out at me while reading your reply. You said you had borderline Hemochromatosis, what do you mean? are you getting treated. There is no such thing as borderline Hemochromatosis, its genetic you either have it or you dont, modern research shows that the symptoms develop at a lot lower levels of iron overload than previously thought and that it must be aggressively treated as soon as possible. Hemochromatosis can causes type 2 diabetes, almost all doctors are clueless about Hemochromatosis if you have been given advice to leave it and wait and see, you have been given the wrong advice. Have a read of these sites and see if you are being given the right advice

    RE 1. It explains the symptoms ... all of them, not just fatigue. It is possible to use multiple diagnoses to do this however.
    2. Treatment of the condition remits the symptoms. If they remain, its NOT an exclusionary diagnosis.

    Totally agree the alternative diagnoses, and a patient may have more than one of these, must explain all the symptoms, and treatment must resolve all the symptoms, unless the alternative diagnosis is a condition which cannot be cured by modern medicine. I.e. a diagnosis of MS is an exclusionary diagnosis even though it cannot be cured.

    However there is another point the alternative diagnoses must be treated correctly!

    In the case of thyroid diseases and cortisol problems the medication has to be given at exactly the right amount for each individual patient otherwise if it is in to smaller doses it wont alleviate the symptoms, if it is in to larger doses it will make the patient considerably worse, (often leading to the abandonment of treatment) There is a lot of modern research that shows that a lot of doctors including endocrinologists are treating their patients with the wrong doses and therefore not relieving the patients symptoms, also thyroid and cortisol problems can be being caused not by the thyroid and adrenals but by many other diseases or from problems with the pituitary or hypothalamus, which should, but often arent diagnosed before treatment is given, leading to the true diagnosis being missed and treatment not working, which is why because soxfans endos have been somewhat useless, I was suggesting that it might be a good idea to see Dr Mirza to get a second opinion as to whether their diagnosis and treatment are actually correct.

    You bring up obstructive sleep apnoea and a lot of people not getting better with treatment. But my question is what else has been missed, people could have sleep apnoea and something else, it might be ME, but it could be many other things, unless everything has been tested for and ruled out it is impossible to say.

    The thing that most people including a lot of doctors dont seem to realise is that obstructive sleep apnoea is not a disease it is a symptom! Diagnosis pro lists these 16 possible causes these include hypothyroidism and insulin resistance which as Dr Mirza states are being missed as a diagnosis in massive numbers because of the use of wrong reference ranges and these people are then given a CFS diagnosis, how many of the people who have OSA and have not improved with treatment have had the true cause of the OSA found and treated? Because if the cause isnt found and treated just treating OSA will seldom achieve anything.

    Although it isnt mentioned on the diagnosispro site experts are beginning to believe that Type 2 diabetes actually causes OSA there is certainly a relationship between the two see

    I cant say this with any certainty without knowing more about your iron status, but it is medically possible that you have Hemochromatosis that is causing the type 2 diabetes which is causing the OSA, if that was the case treating the type 2 diabetes and OSA will achieve nothing, they are symptoms of the Hemochromatosis and only treating the hemochromatosis will fix them all.

    Although the whole ME CFS area is plagued by lack of finances and resources, government disinterest and a lot of incredibly bad research based on mixed cohorts. Probably the biggest problem is the almost complete absence of specialist diagnosticians (specialists in Internal Medicine) Almost all the people who have taken a serious interest in this area are GPs like Chenney and Peterson etc or experts in things like Virology, mitochondria etc, they simple do not have the training to be able to properly rule out all other diseases let alone write complete exclusionary lists, the two exceptions are Dr Hyde a specialist diagnostician, and Dr Mirza who is an assistant professor of internal medicine as well as an endocrinologist, it comes as no surprise to me that these two are the ones reporting such incredibly high misdiagnosis rates they are the only two that Im aware of working in this field who have had the training and experience to be able to diagnoses the less common diseases or the cluster of diseases that can be found in some patients. Dont get me wrong Im not trying to be derogatory to the CFS doctors like Peterson, its just that they havent had the training or the experience to rule out all other diseases, comparing a GP to an assistant professor of internal medicine is like comparing someone who fixes chainsaws to someone who fixes F16s there is a vast gulf in training and experience. If expert diagnostician were employed to investigate patients before they were used in research, we would be out of this mess very quickly because there would be no more mixed cohorts and it would be so much easier to find the cause or causes of ME.

    Regarding Dr Mirza unfortunately I cant find an Email address for him because I would love to have a chat with him and find out more information. He says in his articles that if the tests like those recommended by the CDC do not find the correct diagnosis, the tests he outlines with the right reference ranges will find the real diagnoses in people misdiagnosed as having CFS 90% of the time. However he also says that he has never had to use CFS as a diagnosis, and that it is just a meaningless fancy label for fatigue which can be caused by many conditions, which I take to mean that further testing for rarer conditions finds the right diagnoses in the remaining 10%. He doesnt mention ME, does that mean that he uses that as a diagnoses for some of the remaining 10% ? It is possible that because ME is a rare diseases he has never seen a case of it, I just dont know, and cant contact him to find out. All I can say to anyone is have a read of his articles and make sure that they have had all the tests done using the reference ranges that he states and see if anything has been missed. Hopefully he will write a more in-depth article sometime soon.

    Of course people can have ME and another condition/conditions so it is very important for them to be found as ME is bad enough by itself, any other alternative diagnoses they have must be found and treated if possible, if they are treated and every other possible condition has been ruled out, then and only then can there be certainty that ME is the cause of the problem.

    Regarding PEM/PENE, they are not standard medical terms, so using them to look through the medical literature to see what other conditions have it is pointless, they are terms that have been coined in the CCC and ICC, personally Im not particularly impressed by this continual inventing of new terms which is guaranteed to cause confusion in the medical community, just put a description of the symptom. However people are mistakenly believing that having this symptom means they have ME and that no other condition has this type of symptom, this is a completely false belief. Like I say PEM and PENE are not standard medical terms so you cant use it to see what other diseases have it, but diagnosispro has two categories that are similar they are decreased exercise tolerance/effort fatigue which they list 93 conditions as causing it including cardiomyopathy caused by hemochromatosis see

    And fatigue prolonged after exercise which list another 10 conditions

    Dr Hyde also states that what the CCC is describing as PEM is found in numerous conditions and that it therefore shouldnt be being used as a guarantee of a ME diagnosis.

    The reason why what is being called PEM which I think would best be described as Post exertional relapse is found in so many conditions, is explained by the way we evolved to escape danger no matter what health condition we are in. Are bodies are designed so that when we have a great need to do something we get flooded with adrenaline which overrides any lack of energy we have, and chemicals like dopamine and serotonin that get rid of pain and increase endurance. When someone with a chronic health problem tries to exert themselves the body will recognise this as a major effort and flood the body with the right chemicals to help them to achieve what they have set out to do, and because of these chemicals they can achieve what they want with out to much pain or increase in symptoms in fact they often feel better while this is going on, these types of chemicals stay in the body for a reasonable period of time so the patient goes to bed still feeling ok, by the next day all the chemicals have worn of, and the effect of the extra effort the previous day has aggravated whatever existing health condition they have and they feel terrible. It is a normal response in anyone that has a serious health condition that isnt extreme enough to have stopped them making the effort in the first place. What can be described as PEM or PENE is found in numerous conditions, it is often not listed as a symptom of these conditions because common sense shows that people who have a serious illness shouldnt exert themselves because it causes relapses. Which is why sick people are told to rest.

    So although symptoms that could be called PEM has been reported way back as a symptom of ME in the old epidemics, and therefore can be considered a symptom of it, there is nothing exclusive about it, it is found in many conditions. Personally I find the way that PEM is being promoted as a guarantee of having ME on the internet very disturbing, because it can lead to people thinking they have ME and not getting tested for other options which may lead to a treatable condition not being treated which may cost them years of unnecessary suffering and possibly their life. The idea that PEM is a rare symptom only found in ME is a completely false and dangerous one.

    There is no such thing as a symptom or group of symptoms that are exclusive to ME lots of condition have symptoms that overlap with ME and until there is a recognised widely available test for ME nobody should be being encouraged to say that a set of symptoms means they have ME, the symptoms should only be seen as saying that ME is a possibility, and only accepted as a diagnosis when all other possible conditions have been properly ruled out, and if anything else is found it must be treated properly!

    Unfortunately for the poor people who get put in the ME, CFS group often by doctors who have no clue what they are talking about. The information in the CFS criteria on what diseases to rule out is woefully incomplete and full of errors, a lot of doctors think CFS patients are nuts so theres no point in testing them, or that it is a waste of money testing them because CFS patients arent supposed to fail tests. Even when a patient gets a GP who takes them seriously the average GPs knowledge is very limited and there is vast amounts they dont know, if they refer the patient to a specialist it is often a guess as to which one to go to and pure luck if the patient gets sent to the right kind of specialist.

    Added to this modern research has shown that a lot of reference ranges are very wrong, the way that it was believed that certain diseases should be diagnose is very wrong, doctors believe that certain diseases are rare and therefore never suspect them when modern research shows that they are very common, and belief on how certain diseases should be treated has been proven to be wrong. Unfortunately almost all of these things apply to conditions that have the same or very similar symptoms to those being attributed to ME and CFS, and for reasons that I do not understand the medical community are not being told about the findings of modern research and are still using all the wrong out of date methods.

    Basically it is one colossal mess, which is why we have a forum full of people asking thousands of medical questions that their doctors should be up to date enough to answer for them. Sigh!

    Ive read a lot on Hemochromatosis due to having some odd iron results in the past so if you need any help let me know.

    All the best Alex
  5. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    Hi rlc, I have yet to see any evidence that PEM/PENE is found in other conditions for certain. There is post-exertional relapse, yes, but its not the same thing. Post exertional issues follow a different profile, and so does relapse. The Light's research and Pacific Labs research show our version may be completely unique. The research is ongoing of course and over time this could change, but for now I still regard PEM/PENE as unique.

    Haemochromatosis is not an either or thing. Having a gene is a predisposition, not a sure thing. I am below the clinical reference range for haemochromatosis but slowly climbing. My doc and I discuss when to start treatment every time I see him. I only have one gene, not two.

    The question has arisen as to whether or not sub-clinical haemochromatosis (another way of describing what I have) can interact with ME and diabetes. It will increase oxidative stress and deplete glutathione, as well as increase genetic damage. This increased genetic damage may put additional strain on the methylation pathway as methyl folate is required for DNA repair. Removing blood is the treatment for haemochromatosis and this can induce serious crashes in ME patients - and by serious I mean life threatening. It baffles the treating docs. I have heard of maybe two cases of this, but my recollection is poor. Haemochromatosis genes were also recognized as a risk factor for CFS by the CDC in the 90s, though it wouldn't surprise me if they were just being confused about ME and haemochromatosis induced symptoms. Stuffing around with blood volume and blood oxygenation capacity seems to be a bad thing for ME patients.

    On diabetes, I meet the clinical definition. However every single secondary test I have ever had came back normal or close to normal (including glycosylated haemoglobin). I am atypical. I think its due to my ME and not standard diabetes. I simply cannot process glucose very fast. Correcting my ME should reverse this, and it will allow me to exercise ... where is that darn cure? There is also a small risk that my decreased omega-6 diet I have been following for way over a decade might be decreasing glucose tolerance. It however lowers my inflammatory response, and has significantly reduced my pain levels. I went from extreme pain to mild occasional pain as long as I don't overexert.

    The other thing that nobody has ever factored in to my health is that I have high (but not considered toxic) arsenic. We used bore water on our garden when I was growing up, I think that was the source.

    On the origin of post exertional malaise, I think it goes back to Beard, 1869 or something. The discussion of neurasthenia then was very very close to a discussion of ME today, including post exertional issues. Which raises an amusing point: how come an under-resourced and by current standards ignorant doctor, a century and a half ago, knew more about ME than most doctors today?

    Bye, Alex
  6. soxfan

    soxfan Senior Member

    North Carolina
    ric- I appreciate all your thoughts and thank you for taking the time to write them all and post. Whatever I have was definately infectious to start. I was sick over 2 years before getting any kind of treatment. I believe that I had both Lyme and Bartonella(positive titer) and the Lyme was treated successfully with rocephin. I was treated for Bart but only with Rifampin and for a short time. Maybe now the infection has become CFS...I really don't know.
    I never had adrenal or thyroid problems before becoming sick. Although my mom is hypothryoid as well. I had an ACTH test done a few years back which indicated my adrenals were fine even though my morning level was low 8.5. My thyroid seems to be under control even though I do have occasional symptoms.

    I went to the sleep doctor last week and he definately feels my sleep disorder was infectious induced. He didn't know at the time I was treated for Lyme and Bart in the past. I never feel sleepy....I never sleep during the day. I have chronic fatigue though. I am taking the neurontin for the neuropathy pain and it is helping alot.

    Believe me when I tell you I have had every test imaginable these past 8 years. I don't think there is anything more to test for and we have spent thousands on this and supplements...and medications.

    If I don't feel better on the Bartonella treatment then I will quit and move on. I have a couple excellent doctors I am seeing now so I am going to stick with them.

    My main symptoms are Sleep...neuropathy pain...chronic fatigue. I don't have any others as these have been the main ones from the start...If I can get my sleep straightened out then I think some of the fatigue will go away too .My life definately is not normal and it probably will never be again. I am still limited in what I can do and I do have to spend at least 2 hours in the afternoon resting. So that is why I keep trying...

    I also want to add that I went to a very well known CFS specialist in Boston. He never said I have CFS because I didn't fit the criteria....He actually wrote down symptoms I never said I had in his report. The Lyme doctor never said I had Lyme but did say I had Bartonella...I do have hypothryoid and that is about all I know. So the journey continues....
  7. rlc

    rlc Senior Member

    Hi Kim, it certainly doses sound like an infection and bartonella is a possibility from my understanding it is on the emerging diseases list and there are a lot of different types and they expect to find more, so it is hard to say exactly what the symptoms are, there is some information on different drugs for treatment here hopefully it is that and treatment will soon cure it.

    Hopefully your thyroid problems are being treated properly, in the article unveiling the mysteries of the thyroid, by Dr Mirza which I posted earlier he gives a formula for how much thyroid medication should be given to achieve remission of symptoms so it might be worth double checking that and making sure your getting the right amounts of meds. Thyroid problems can evolve slowly and because the reference range for TSH is too high they are often missed until it finally evolves to become very obvious on the tests.

    The thing that bugs me is why is your cortisol low? But your ACTH test say your adrenals are fine? Was this the ACTH stimulation test? Have you had the ACTH blood test as well? The ACTH stimulation test measures how the adrenals respond to synthetic ACTH to see if they are working properly, the ACTH blood test measures how much ACTH you are producing if it is low it can indicate that the problem is with the pituitary or hypothalamus not sending ACTH to the adrenals to tell them to produce cortisol.

    On this site it list all conditions which can cause adrenal problems and there are hundreds of them they do include other bacteria and fungi which could have been suppressed by the anti biotics youve been taking, I just dont know, it is possible that the low cortisol is the result of the lack of sleep, because insomnia is proven to lower cortisol levels. There is an interesting article here about how low cortisol causes high adrenaline and therefore insomnia and fatigue here

    Have you ever had the likes of CT or MRI scans of adrenals, pituitary and hypothalamus?

    Lack of sleep also explains the fatigue, I find that I get worse peripheral neuropathy when I dont get enough sleep. But why arent you sleeping even with sleep medication. Hypothyroidism would explain all your symptoms see but antibiotic dont treat standard thyroid problems, and you say they have helped you, so something else is going on, however it is possible to have infectious thyroiditis see maybe it is part not properly treated thyroid part something else?

    Regarding peripheral neuropathy there is a good article here it list causes including vitamins E, B1, B6, B12, and niacin I would imagine that your folate and B12 have been checked, but make sure levels are nearer the top of the reference range because the lower end of the reference range has been proven to be too low.

    Unfortunately you have three very common symptoms that are found in hundreds of conditions fatigue, insomnia and peripheral neuropathy which makes it very hard to work out what is going on, hopefully your bartonella treatment will do the trick and that will be the end of it fingers crossed, if I think of anything that may be of use I will let you know!

    All the best
  8. rlc

    rlc Senior Member

    Hi Alex I would recommend further reading on Hemochromatosis, it is an either or thing but hard to find out which, it is commonly defined as people who have only one copy of the gene dont have the disease they are carriers of the disease, and people with two copies do have the disease. You say that you only have one copy of the gene, however they at best only test for three of the different types of genes that can cause Hemochromatosis, and over forty different genes have been identified so far and more are expected to be found, the two most commonly found genes C282y and H63D cause about 85% of the cases of hemochromatosis the rest are caused by the genes that are not tested for.

    However there is what is called compound heterozygous where people have one copy of two different genes e.g. C282Y and one of the other untested for ones and they can develop Hemochromatosis, although they will only get tested for at best the three most common genes and will often be told that they are just a carrier of say the C282Y gene and dont have hemochromatosis. There is also scientific evidence that some people with only one copy of a gene can become sick. Adding to this confusion some people have two copies of the genes and dont get sick, nobody knows why, it is for these reasons that the iron overload diseases association recommends that genetic testing is not used and relied on because it is bound to lead to people having the diagnosis missed and not treated see

    Hemochromatosis can best be defined as someone who is overloading on iron, no matter what the genetic tests say, so someone is either overloading on iron or they are not, you appear to be saying that you test indicate that you maybe overloading on iron. The belief that genetic tests show a predisposition to it is because of the holes in the testing and the science dangerous! The only thing that can be relied on is what the iron level tests say and then how the patients respond to treatment, some people can have high iron levels but they drop very quickly with treatment so therefore it isnt iron overload no matter what previous tests have said. If a patients iron levels dont drop quickly in response to treatment they have hemochromatosis, the gene and blood tests are not an accurate measure of iron levels in the body, it is the use of these tests that leads to terms like borderline hemochromatosis, there is also a false belief that iron levels must rise very high before symptoms start, so doctors will say that it is borderline and will adopt a wait and see approach, this is a wrong out of date belief, any excess iron is highly toxic and symptoms start at a way lower level than was previously believed and the longer it is left the worse it gets.

    Different people with iron overload store the iron in different parts of the body and nobody knows why. Some people will start storing iron in say the pituitary with very little being stored in the liver, because the pituitary is very small, the size of a pea, it only takes a very small amount of iron to damage it, if this happens the entire endocrine system will not work properly because the pituitary sends out the message chemicals that tell the entire endocrine system to work. It is because of reasons like this that it is now believed by the experts in iron overload that saying peoples iron levels are borderline and adopting a wait and see attitude is now considered very dangerous, because very small amounts of iron overload in certain vulnerable parts of the body can cause disastrous results.

    The iron overload site states that a transferring saturation level above 44% should lead to treatment, the treatment will then either confirm or deny the diagnosis depending if the patients iron levels drop quickly or not. See treatment confirms diagnosis here

    You express an understandable concern about how treatment will affect you, its kind of a catch 22 situation, if you do have iron overload then delaying treatment can lead to permanent organ damage and it can be fatal. There is another test that can help diagnosis in some cases, its called a ferriscan which is a type of MRI that can measure iron stores in the body, however although it is capable of measuring all the iron in the body, it is only being used to measure iron stores in the liver, which is where most people store the majority of the iron, however there are people who dont store the iron that is causing the problem in the liver and if you are one of them, it wont confirm the diagnosis, if you are interested in this there is a site that explains it and where ferriscans are located, 5 in Queensland, here

    The sad reality is that there are no tests that are 100% reliable for confirming iron overload in all people, the only truly reliable gage is how the patient responds to treatment if iron levels dont drop quickly with treatment then the patient has iron overload. This is the only way that it is possible to tell for certain if you have Hemochromatosis or not. There is a hemochromatosis forum here that has some very knowledgeable suffers on it if you are interested in talking to them about it

    I dont know what your test results are but there are a few other conditions that can cause high iron results if you have high ferritin and transferring saturation the other possibilities are listed here

    Unfortunately the only certain way you can tell if iron overload is an alternative diagnosis that is causing your symptoms is to treat it and see what happens. Hemochromatosis is certainly capable of causing the symptoms of ME and has been misdiagnosed as it many times, it can damage almost every organ in the body, as well as the joints, and can also damage all the endocrine system including adrenals, pituitary and thyroid, it does damage the immune system and can cause NK cell dysfunction.

    Sorry but there is no way I or anyone else on the planet can give you a 100% guarantee as to whether your tests results mean you have iron overload or not, the more up to date researchers say only treatment can confirm, the tests are just not sensitive enough at the moment.

    So in a nut shell the genetic tests are unreliable and the blood iron tests are not always an accurate measure of iron in the body, and only treatment can confirm the diagnosis. If your tests are indicating it is a strong possibility it is up to you to decide how to proceed.

    RE Which raises an amusing point: how come an under-resourced and by current standards ignorant doctor, a century and a half ago, knew more about ME than most doctors today?

    Simple answer, they listened to their patients LOL

    Cant say I know much about atypical diabetes theres a few articles on line about it like I get the impression the medical community doesnt have to much of an understanding of it either, sigh, but there is the possibility that you have excess iron in your pancreas or some other part of the insulin control system which is possibly causing it.

    Regarding PEM what people want to believe is up to them, but a few points that you might want to consider are.

    The first main source of information on PEM is the CCC which invented the disease ME/CFS by combined the two conditions ME and CFS, it is also mentioned as a symptom in the CFS fukuda definition but without a lot of detail, Dr Carruthers has since then been the principle writer of the ICC which states that the CCC was wrong and ME and CFS are different, so PEM in the CCC has been come up with by mistakenly combining two very different conditions, The second thing is that nowhere in the CCC does it say that PEM is only found in ME/CFS, what it says is that it is a cardinal symptom of ME/CFS not an exclusive to ME/CFS symptom, but that there are other diseases that have a similar symptom pattern and that they have to be ruled out because of this. E.g. you cannot just diagnose ME/CFS on the symptoms that they outline because other diseases will cause these symptoms including PEM and will be mistaken for ME/CFS unless they are tested for and ruled out. The diseases that they say can also cause the symptoms that they outline in the CCC for ME/CFS they state are

    Addisons disease, Cushings Syndrome, hypothyroidism, hyperthyroidism, iron deficiency, other treatable forms of anemia, iron overload syndrome, diabetes mellitus, and cancer.

    It is also essential to exclude treatable sleep disorders such as upper airway resistance syndrome and obstructive or central sleep apnea; rheumatological disorders such as rheumatoid arthritis, lupus, polymyositis and polymyalgia rheumatica; immune disorders such as AIDS; neurological disorders such as multiple sclerosis (MS), Parkinsonism, myasthenia gravis and B12 deficiency; infectious diseases such as tuberculosis, chronic hepatitis, Lyme disease, etc.; primary psychiatric disorders and substance abuse.

    All of these conditions will cause the same symptom pattern and they have included iron overload as one of the diseases that will do this. Unfortunately there exclusion list is a bit lazy because they say things like, neurological disorders such as MS etc, these are not complete lists there are many more unnamed diseases that will cause these symptoms.
    I have a family member that has Parkinsons and I can tell you that they are right Parkinsons causes PEM.

    The point is if PEM was exclusive to ME then there would be absolutely no need to have these exclusion lists for other diseases, if ME was the only disease in the world that caused PEM it would be one of the simplest disease on the planet to diagnose and the answer to what causes it would have been found a long time ago because there would be no mixed cohorts.

    There is nothing exclusive to ME about what they term PEM

    Post-Exertional Malaise and/or Fatigue: There is an inappropriate
    loss of physical and mental stamina, rapid muscular and cognitive fatigability,

    This is found in many conditions. They then say

    post exertional malaise and/or fatigue and/or pain and
    a tendency for other associated symptoms within the patient's cluster
    of symptoms to worsen.

    because they use and/or, what this mean is that the patients can have post exertional Fatigue, or post exertional malaise or post exertional pain(with no definition of what pain or where), or combinations of these, this is not a definition of a symptom, this is a definition of a multitude of symptoms that can be completely different from one patient to the other. To make matters worse malaise, fatigue and pain are scientifically completely un measurable and are symptoms that are also found in psychiatric diseases like depression, which is why they have included psychiatric illnesses in the list of conditions to rule out, they can cause PEM.

    All it actually says is that exertion can make the patients symptoms worse, this is found in hundreds of conditions.

    They then say There is a pathologically slow recovery
    period.usually 24 hours or longer.
    Again found in hundreds of conditions.

    So not only do they not say that PEM is exclusive to ME/CFS quite the opposite they give lists of other disease to rule out that can cause it. But their description of PEM is not that of a symptom, it is the description of a multitude of symptoms that different patients can have very different combinations of, all given the same label.

    Although it is written in a way that sounds impressive, when it is broken down all it actually says is that exertion makes the patients symptoms worse, which is a sign of having just about any chronic illness.

    Although Im pleased that the ICC has separated ME from CFS it unfortunately repeats the same pattern, It again states that what they are now calling PENE is a cardinal feature, not an exclusive feature! It does say that all other alternative diagnoses that could explain these symptoms should be ruled out, but this time they dont make an attempt to list them.

    It again uses language that at first gives the impression of a comprehensive symptom but again a close inspection shows that it isnt actually describing a symptom it is again a matter of choosing from a multitude of symptoms and therefore doesnt really define anything.

    They define PENE as

    1. Marked, rapid physical and ? or cognitive fatigability in response to exertion, which may be minimal such as activities
    Of daily living or simple mental tasks, can be debilitating and cause a relapse.
    2. Postexertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms.
    3. Postexertional exhaustion may occur immediately after activity or be delayed by hours or days.
    4. Recovery period is prolonged, usually taking24 h or longer. A relapse can last days, weeks or longer.
    5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness
    Activity level.

    A close look and you immediately see things like the symptoms can be physical and/ or cognitive, so one patient can have physical symptoms, one can have cognitive, one can have both, this is a description of three very different symptoms. You see them saying, can lead to worsening of other symptoms, without a definition of what these symptoms are it is meaningless. They say post exertional exhaustion can occur immediately or be delayed by hours or days, again this is a description of very different symptoms from person to person.

    The ICC description of PENE is just like the CCC description of PEM it is not the description of a symptom it is a description of a multitude of symptoms which are very different, and that different patients can have very different clusters of these symptoms and still qualify for the diagnosis. They dont describe a symptom, they describe a vague ill defined cluster of symptoms that are common to a vast multitude of diseases. If they had said that the cardinal symptom was something like flu like symptoms including fever delayed by 24 hours that would be a symptom that could be used, what they have defined is a meaningless collection of very different symptoms found in lots of conditions that get worse with exertion.

    To make matters worse apart from the fact they have called it PENE which is penis in Spanish(oops), they are stating that these symptoms are caused by defects in the neuro immune system. There is no 100% scientific proof that this is the case, and because of this they are likely to be discredited in the scientific community, they also have include XMRV as a possible cause when the science had already torn that theory to shreds, again leaving them open to being discredited. The symptoms that they outline in the ICC can just as easily be attributed to an endocrine problem the ICC is after all a good description of Addisons disease.

    It is impossible to write any list of symptoms that can be used to say that anyone has ME, it has the same or similar symptom patterns to a multitude of diseases. Dr Hyde who probably knows more about it than anyone else, never says that a patients symptoms mean they have ME, he knows that its symptoms can be produced by a multitude of diseases and he systematically rules them all out until ME is the only possible diagnosis, he states that PEM is found in many conditions that patient that wrongly get diagnosed as having ME have, interstingly he also does not say that PEM is even a cardinal symptom of ME, He finds that about 75% of his patients have been misdiagnosed and dont have ME, and because of the expense of seeing him most of these patients have already been able to afford extensive medical testing which has failed to find the diagnosis.

    The CCC and ICC along with all the CFS definitions are just lists of symptoms found in numerous diseases, relying on them to say a patient has ME is wrong and will lead to misdiagnosis and unnecessary deaths unless all other possibilities are ruled out first. Unfortunately documents like the CCC are written by doctors for doctors, it says that PEM is a cardinal feature not an exclusive feature of ME/CFS and lists a large number of other diseases that can cause it. Doctors know that what they are describing as PEM or PENE is found in numerous conditions, unfortunately people who are not medically qualified are reading the likes of the CCC and have jumped to the conclusion that PEM is only found in ME and this has spread across the internet, it is a dangerous myth not backed up by medical science, and it is a view that is not supported by the writers of the CCC and ICC they say it is a cardinal not exclusive symptom and that other diseases must be ruled out.

    Regarding the lights and pacific fatigue lab research, I see no evidence of extensive investigation of patients to rule out other diseases, and the use of CFS criteria and wrong names for ME like ME/CFS, so Im far from convinced that this isnt just research on mixed cohorts adding to the confusion.

    Anyway nice chatting to you, I hope for your sake you do have iron overload that is easily treatable! And treatment makes you better.

    All the best
  9. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    Hi rlc, thank you for a detailed response.

    I have read a lot of the haemochromatosis literature before.

    I have a half brother with full haemochromatosis, and a number of other family members carry one gene. I disuss the haemochromatosis semi-regularly with my ME doctor. This is every visit but I do not get out much.

    My iron was completely normal when I first got ill. However what the gene does is slowly increase the level - with two its faster. So most of us with one gene, particularly women, will not develop a dangerous iron level. Men on the other hand are at greater risk. So far as I am aware the only way to lose iron is through blood loss. Not much is excreted via other mechanisms.

    I am very aware that free iron is extremely toxic. As levels of stored iron grow, so does free iron. Its not bound iron that is particularly dangerous, but any amount of free iron is highly dangerous.

    I will read the material you provided and may comment further later.

    With respect to symptoms it is entirely possible that even very low levels of free iron will be more toxic and induce more symptoms if a patient has other issues. This includes oxidative stress from some other condition, including other polymorphisms. This may mean, for example (as one of a range of answers) that I only have mild ME even now but that it is exacerbating the impact of what would otherwise be small amounts of free iron. These are all open questions, nothing is really understood yet. This is however why I discuss starting treatment at every doctor visit. Sooner or later he will agree to do that ... I have indeed been pushing for it for some years now. It is however difficult for a doctor, given the current regulatory regime, to justify such treatment without clear evidence that it is required. Maybe I can suggest a trial treatment as a way of confirming the need for it.

    With regards PEM/PENE this is about labels versus mechanisms. The mechanisms uncovered by the Lights seem to be unique to ME. Its not diagnostic because to prove that will require more funding, more research, and in particular a check to see if all similar disorders have the same markers. This is going to happen slowly, so don't hold your breath.

    However the Pacific Labs results are outside their experience of other disorders. Again they could be wrong - to prove diagnostic capacity they will have to compare against all similar diseases as I have said, and do some really large scale studies. Given the nature of the exercise labs this will be very resource intensive. It can be done with oodles of funds and multiple reseach centres, but this is going to be a long road.

    So the mechanisms underlying ME PEM/PENE appear to be unique. I do wonder about post-cancer fatigue responses though. In time we will know if PEM/PENE are diagnostic, but for now I can only report that they appear to be unique. I have no reason to think otherwise, though I do acknowledge it could easily be different, or unique to just a small number of diseases.

    In MS for example they have the cleaved abnormal RNaseL that we do, as do people with Rheumatoid Arthritis. These are the only three known diseases with high levels. Its also though that viral infections might induce it. So that leaves four possible diagnoses if you have this marker. Other alternatives are not currently known. So the PEM/PENE issue is a known one with other markers.

    I agree that ME PEM/PENE may not be neurological at all, until we understand the mechanism it cannot be adequately characterized. So I also agree that symptom lists are highly inadequate from a scientific point of view, however the relevance is clinical, and I think the target here is medical practitioners not researchers.

    Another complication is that PEM/PENE may be a composite of several different mechanisms, say arising from ME and OI and oxidative stress and a range of polymorphisms. In this case it will be very hard to definitively identify mechanisms.

    In the meantime there are numerous groups looking at diagnostic markers. Komaroff has specificity for females up to 92% though its only been compared to depression (not other fatiguing illnesses) and if what KDM recently implied then one of their markers has 97% sensitivity ... but that doesn't nail down the diagnosis of ME. I suspect that a combination of simple markers will be shown to nail down the diagnosis but it will be a few years at least before we get there.

    Bye, Alex
  10. soxfan

    soxfan Senior Member

    North Carolina
    Hi Ric- Once again thank you for all of that information. I actually left out a few other symptoms I have that do have a pretty big impact on my life. I am not sure why I didn't post them....I also get severe mental fatigue when I work which then turns into physical exhaustion. I can do anything physical at work and be fine but when I have to communicate with co-workers and customers I feel as though my brain is going to explode. I work in a pharmacy up front and deal with customers which is mentally tiring. If I have to put out stock etc..I am fine. It is as though my brain can't keep up with my thoughts and then I feel so fried.
    Shopping is also exhausting...I have to go with a list and just buy those items because looking at all the products does the same thing...mental exhaustion.

    I don't have a problem with reading..watching tv...or anything physical. In fact I can still exercise just about everyday with no problem (walking). I have never had any issues in that area. Just my brain....

    I did have the ACTH stim test and my results were normal after the ACTH was injected. I have also had the ACTH blood test and the results were normal. It is just the starting cortisol that is low. I currently take 5mg of cortef. At one point I was on 20 mg but have cut back over the years. Since the saliva cortisol tests are questionable then I don't want to take too much even though my readings were low in the morning. My blood cortisol can run anywhere from 5.2 up to 14 at 8am. That is a huge difference. I always have the blood taken at the same lab so the ranges don't change.
    I do believe my thyroid is being treated properly. I really can't take any higher dose because I have osteopenia and I don't want to risk my bones getting any worse. All my levels are in the normal range so I will just leave that as it is.

    As for the Bartonella infection causing my symptoms...I don't really know. I suddenly had a paralyzed vocal cord in December which lasted 6 weeks. My Lyme doc put me on abx and within days it started clearing up. It isn't totally back but at least I can talk normally again. He said right off he thought it was Bart so that is why I am still in treatment for that. I see him tomorrow and will discuss things....I don't want to stay on abx too long.

    I have had a MRI of my adrenals and my brain I think in 2006. I also have had full CT scans of my brain and upper torso. In 2006 I had a spinal tap as well. Everything has always been normal....
    I just started taking B vitamins and alpha lipoic acid along with all the other supplements. I will ask my doc tomorrow about what else he might suggest. I think I am pretty well covered on all that. I don't think I could swallow any more pills anyway! I think I have been checked for everything. If I wrote a list of everytest I have had in the past 8 years it would be very very long....

    The neurontin has been helping my neuropathy pain alot. I am up to 200mg at bedtime and I never woke once last night. I can't say I feel any more refreshed though. I still wake feeling unrested which just gets worse as the day goes on. It is so hard to function day after day with this chronic tiredness...

    I really feel whatever is still wrong with me is brain related because my symptoms are all neurological and were from the maybe I will never know for sure what started this....

    Thank you again for all your information and for taking the time to is very much appreciated!
  11. rlc

    rlc Senior Member

    Hi Kim, thanks for the extra info, your ACTH blood tests mean that there is nothing wrong with your pituitary or hypothalamus as far as getting the adrenals to work, your ACTH stimulation tests shows that your adrenals work and can produce enough cortisol, the MRI and CT results show that there is no structural damage or tumours causing any problems and probably rules out that any infection has damaged your adrenals, from memory your iron tests are OK so that rules out iron overload damaging the adrenals, and most endos will say that this all proves that you dont have an adrenal problem. But your morning cortisol tests are low and you feel better with cortef, so something is obviously going on!

    There is debate about how accurate the saliva cortisol tests are, it is possible to get the blood cortisol tests done at regular intervals during the day to see what is happening, but it is not standard medical practice and is likely to be hard to get done, and if youre taking cortef it will mess up the results anyway.

    The lack of sleep plus the stress of being sick can cause low cortisol and higher adrenaline, and people can get stuck in a pattern of this happening. There are however illnesses that can cause high adrenaline like pheochromacytoma, there is a test for high adrenaline which can be done it is called a 24 hour urine collection for catecholamines dont know if you have had this done? But it is a possible test to do

    Although lack of sleep causes low cortisol, another thing that seems to be forgotten by just about everyone, is that night shift workers get a reversal of cortisol levels, the body adapts to their nocturnal lifestyle and cortisol levels become low in the morning and higher at night, insomnia can have the same effect.

    Regarding your thyroid problems hopefully it is being treated properly, but when peoples thyroids havent completely failed and are still producing some of the hormones it can be very complicated to treat, the problem is often over treatment leading to the development of hyperthyroid symptoms which include insomnia and fatigue.

    This is what dr Mirza has to say about it in unveiling the mysteries of the thyroid on this page which you can double check against and see if your treatment is correct and maybe get your doctor to have a read of

    3. The authors recommend a full-dose levothyroxine replacement for
    almost every one without coronary artery disease. This relies on the
    assumption that by the time a person develops hypothyroidism, the whole
    thyroid gland has failed. In our clinical experience, most people with
    thyroid failure present with partial thyroid failure and they lose thyroid
    function slowly over months or even years. Prescribing 100 mcg of
    levothyroxine to a person with a TSH of 10 for example is a recipe for
    suppressed TSH and symptoms of palpitations, tremors, anxiety, and other
    symptoms of overtreated thyroid failure. Hashimoto's thyroiditis, which is
    the precursor for thyroid failure, does not evolve into hypothyroidism
    over night. Since the hypothyroidism is evolving, the treatment should
    also be titrated gradually. This is even more cost effective, since it
    saves many unnecessary phone calls, visits (including visits to the
    Emergency department), and blood tests.

    In our experience, a levothyroxine dose of 12.5 mcg a day would reduce TSH
    by 2 digits. This simple math will allow you to have a rough estimate of
    levothyroxine dose. The goal is to reach a TSH of 1-1.5 mU/L.

    If you achieve a TSH of 1-1.5 and your patient is still symptomatic, do
    not waste your time on thyroid and look for other reasons for the
    patient's symptoms.

    Vitamin B12 and vitamin D deficiencies are the most 2 common causes of
    patients with residual symptoms. One should also look into sleep apnea,
    depression, adrenal insufficiency, prediabetes (or diabetes), undiagnosed
    celiac disease with other nutritional deficiencies such as iron

    One common mistake that we see is to get blinded by the thyroid and forget
    that these patients do get other illnesses.

    4. Recently, we have seen cases of
    persistent elevation of TSH above 20 in compliant patients. Accusing such patients with non-
    compliance would be very insulting to them, unfair and wrong. We diagnosed
    such cases after extensive testing, with the deficiency of the enzyme
    deiodinase at the level of the pituitary gland. The partial enzyme deficiency means that T4 cannot be converted to T3 completely
    and that the pituitary glands are not sensing T3. This is the only
    circumstance, in which we use T3. We added a small dose of T3 (as cytomel)
    to the levothyroxine regimen and TSH returned to normal within 6 weeks.

    Good to hear youve started taking B vitamins etc they will help you to relax which may help you sleep, the stress of insomnia and being sick causes the body to burn up lots of vitamins and minerals and people can easily become deficient, the other thing is that no matter how structurally healthy your adrenals are if they are not getting the right vitamins and minerals then they wont work properly. B12 is especially important and can cause neuropathy, reference ranges for it are to low so ask your doc what results were and make sure its in the upper part of the reference range.

    Hopefully your Bart treatment will work and it will all be over soon, but if it isnt, I have been through times of terrible insomnia during the course of my illness and there are things that I have done that have helped cure it which has also lead to a big increase in general health, sleep meds were largely a waste of time! I know totally what you mean about how having to deal with other people and thinking leads to physical crashes, this fixed for me when the sleeping was fixed.

    Vitamin and mineral wise, getting my Vitamin D levels high has helped the most with everything, a lack of it is linked to insomnia, I also have taken large amounts of magnesium and zinc to fix deficiencies in that, along with taking a prescription strength multi vitamin and mineral from a naturopath which has lots of B vitamins in it. I also take Liquorice, but dont take this with cortef unless advised by someone who really knows what they are doing, it doesnt increase cortisol what it does is, cortisol is normally broken down in the body in about two hours the Liquorice delays this process so that the cortisol stays active for about six hours instead of two, so if you take cortef at the same time you can very quickly end up with too much cortisol and end up in hospital, grapefruit has a very similar effect to liquorice so avoid that unless advised by an expert.

    I presume that you have been told about the 90 minute sleep cycle and if you get the timing wrong you wont get to sleep for another 90 minutes, and to turn out light to stimulate the sleep process and avoid stimulants coffee, foods etc and TV etc, but there are some other things that can be tried and have helped me.

    There is an eastern technique called Mudras that are ways of holding hands and fingers that stimulate different responses in the body. If you put the tip of the index finger on the tip of the thumb on both hands while keeping the remaining fingers reasonably straight it helps to quieten the mind and makes it easier to sleep, you will see in classic pictures of people mediating that they are doing this. There is a picture of how to do it here
    You can do this for 10-15 minutes before you go to sleep and/or do it when you are in bed going to sleep.

    Another thing I do is, if while doing the finger exercise you gentle keep your focus at the spot between your eyebrows, while trying to go to sleep it helps keep the mind focused on one thing and it causes the dream processes to start, and even though youre not completely asleep you will notice this happening, then full sleep takes over. Sounds a bit odd but it does work.

    Try and pay attention to how you are breathing throughout the day, if people are stressed they will naturally breath faster and shallower, and people can get into a habit of doing this, and it becomes automatic this will cause an increase in adrenalin which will lead to fatigue and poor sleep, shallow breathing turns on the fight or flight response no matter what is happening to you, if you notice that you do breath shallower at times, a conscious effort to breath slower and deeper so that your stomach fills not just upper chest will reverse this and help with fatigue and sleep. Slow deep calm breathing makes the mind peaceful. Try to do this when dealing with people and thinking it can help avoid those crashes.

    Dont know if you do meditation, but it helps with sleep, unfortunately it can take a while to get the hang of it, doing it before sleeping greatly helps with getting to sleep, even if you are not able to sleep meditation makes the brain go into some of the same brain wave patterns as sleep so it has a similar effect as sleep and can help compensate for a lack of it.

    If you are able to get any regular exercise without crashing!! Do so it will help burn of the adrenaline and help with sleep.

    I have found these things very helpful for me so hopefully they will help you, Im sure if you could just get regular sleep you would feel so much better, I know in my case being able to sleep has helped enormously!

    There are things like 5htp that can help with sleep but it can react badly with certain medications so make sure about that before taking it.

    Hope some of this helps in some way and that the bart treatment works

    All the best
  12. rlc

    rlc Senior Member

    Hi Alex, the thing with hemochromatosis gene testing is no matter what your genetic tests say nobody knows if you have one or two copies of hemochromatosis genes because they dont test for all of them and they dont think they have even discovered all of them, so you may be compound heterozygous and the test that they run cant tell if you are or not, people can also overload with one copy of the gene it is for these reasons that even though hemochromatosis genes were only found in the eighties the iron overload association already considers the use of gene testing for iron overload to be archaic and dangerous!

    I do know what you mean about it being hard to get treatment I had three high transferring saturation results over a number of years that were ignored until I got hold of my blood tests. Having two high transferrin results is said to be 98% diagnostic for hemochromatosis, GP thought it was almost certain because of this. Had genetic tests that showed I only had one copy of the gene, had one hell of an argument with a haematologist that because my ferritin wasnt very high and I didnt have two copies of the genes was not a scientifically proven or safe reason not to treat to confirm or deny the diagnosis, and forced him to read the literature and he eventually relented (yes Im sure he thought I was a stubborn pain in the arse Ha)

    Eventually did get treatment that did cause the iron levels to drop quickly so Im one of the 2% who have high transferrin saturation and dont have hemochromatosis, bugger had been very hopeful that I had at last found something treatable. I did get a ferriscan after to double check.

    What I can say is that I fit all the CCC and ICC criteria for ME and having the blood taken out had no negative effects what so ever, obviously everyone is different but I was fine. Make sure you dont take vitamin C until you know whether you have iron overload it dramatically increases absorption of iron!

    Highly recommend getting your doctor to read all of site especially barriers to diagnosis and barriers to proper treatment

    Regarding other effects that high iron levels can have, bacteria, viruses, parasites and cancer cells feed on iron, therefore if you have high iron and anyone of these things you are keeping them well feed and healthy and they will destroy your health. I read an article about how the WHO had decided that Africans had to lower levels of iron so they went to a place in Africa and started handing out iron pills, end result was the extra iron that they were given allowed all the dormant infections that were in these people to flourish and lots of people died! Oops! Any excess iron is dangerous for a lot of reasons!

    Regarding the lights and pacific research, like I say I havent seen any sign of extensive testing to rule out other diseases and they use CFS criteria, so Im sceptical that there may be mixed cohorts, over the years I have seen many things being said to be exclusive to ME like NK cell dysfunction and RNaseL etc, and it all ways turns out these things are also found in lots of other conditions with overlapping symptoms with ME. RnaseL dysfunction have also been found in Lupus, type 1 diabetes and prostate cancer and I suspect it will end up being found in hundreds of conditions, as it seems to be linked to auto immune conditions, viral conditions and cancer, the reality is that these kind of things have only been looked for in a small number of diseases and until the research has been done on everyone of the over ten thousand disease nobody know what they are found in, so nobody can say that any of these things are biomarkers exclusively for ME. My view is that none of the scientists and doctors have ever said that PEM is exclusive to ME it is just a cardinal symptom and other conditions can cause it, so I wouldnt recommend anyone using PEM as proof that they had ME it could be a very costly decision if a treatable illness is missed because of it.

    All the best
  13. soxfan

    soxfan Senior Member

    North Carolina
    ric- once again...thank you for all your insights on the things I wrote about. I just wanted to let you know that I saw my Lyme doc yesterday. He wants me to try the 5HTP I had tried it a while back. I bought 100mg capsules and I will make them into 25mg to start. He agrees that if I can get my sleep problem managable then I would feel better during the day. We talked over many other prescription and otc products but I have tried practically all of them without much luck. Again...I am usually able to fall asleep but wake up multiple times and always wake unrefreshed. Maybe that is just how it is going to be for me...

    I am on only 5mg cortef at the moment which I think I mentioned. I do have the adrenaline problems in the middle of the night so not sure why that is happening. Everytime I try and get off the cortef I start having those problems so I figure I will just stay on the 5mg especially while I am going through the stress of abx treatment.
    My doctor does agree that my adrenal testing shows I am able to produce but still likes the morning cortisol level around 15mg even though the normal range is 4-24mg which is a pretty wide range in my opinion. I did have that urine test done over a year ago and it was fine. At the time I had no idea what he was testing for but I looked up the name of the test and it was the one you mentioned.

    I have tried to meditate...but can't seem to focus. My body always seems like it is in the flight or fight mode and can't settle down long enough to concentrate and relax. I put calming music on my ipod to play before bed and even then laying there my body is just totally unable to calm down and relax. I always feel as though my heart is pounding out of my chest and sometimes like I am laying on a water bed bouncing up and down. It is very annoying and definately prevents me from resting.
    I do feel myself getting breathless when at work and getting stressed. It seems to be something that I can't control inside. I love my job and the people I work with but when I start getting tired and struggling to make it through is when my brain feels like it is going to burst. Then I start to break out in sweats and my skin gets really red. I usually go into the bathroom and wash my face with cold water.

    I really feel my symptoms are totally neurological and I can't really control any of them...the muscle twitching...neuropathy pain...sweating...fatigue..adrenaline surges...overstimulation...disturbed sleep..I really feel as though not much can be done at this point and I should just learn to deal with them the best I can. I am actually pretty hopeless right now.

    I am going to give the abx a couple months and then quit if I don't feel any kind of improvements... Thanks again for taking the time to is always very interesting and informative!
  14. john66

    john66 Senior Member

    Hi Soxfan, I recently went to Dr. Enlander in NY, with a similar issue. My left heel and calf were on fire. Hurt to put clothes on and to have running water on it. He said to see a podiatrist! I didnt, I spoke to my local doc who said it sounded a lot like shingles pain. Nuerontin helped and it went away in two weeks, but I think he was right. I have been through all of the diabetes tests and that is ruled out. Nuerologists, blah blah blah. I am so sick of doctors in general. I have similar issues as you in regard to sleep, I feel the majority of my physical and mental problems are due to lack of dep sleep. Body and mind cant repair and regenerate. I cant even read a long post. Is the sleep any better??
  15. soxfan

    soxfan Senior Member

    North Carolina
    john66- i just bought some quick dissolve 5HTP and will try that tonight. They are tablets which I will be able to cut up into quarters or half so I won't overdose myself. I am so sensative to medications and have to be careful so I usually start low and taper up. I am sleeping pretty well although waking up alot...I have been having bad dreams for the past month now as well...not sure what that is all about. So I am sleeping well but still waking up feeling unrefreshed and not having a very peaceful sleep.
    I take the neurontin when the pain is super bad otherwise I don't because it makes me feel really strange. I am pretty use to the pain now since I have had it for almost 8 funny because my first neurologist told me to see a podiatrist too! He said if I got supports for my arches the twitching, cramping and burning pain would stop. HA
  16. SaraM

    SaraM Senior Member

    Pain is my worst symptom. I recently started taking a very low dose of ALA (25 mg) 3x/ day with positive results. A higher dose causes hypoglycemia. I have tried LDN, many meds, and supplements with no effect. Benfotiamine and ALA are just great.
  17. brenda

    brenda Senior Member


    Have you been on this site?

    Its a good place to get information about which LLMD`s are actually treating Lyme and coinfections effectively though many find that the antibiotic route does not work, with some being on them for 5 years, yet get major improvement from other methods. Not all LLMD`s are alike. Quite a few are not recommended.

    You will also see that the theory of false positives for Lyme, and continuing antibodies not showing active disease after treatment, are hotly disputed by the Lyme community.

    It is quite common to be treated on antiX for a length of time, stop and then have symptoms recurring. Many have given up on antibiotics.

    Some are having sucess with rife and this is the method I am using but a recent relapse has made me seek to start at a more basic level of correcting nutritional deficiencies whch were quite severe supprisingly as I was on many supplements and an organic excellent diet. Lyme and co are too difficult to treat by using one modality.

    My new treatment plan is to allow my body to repair the damage done through these deficiencies, namely manganese and b2, which is not a simple process, and get the stored iron in my liver mobilised. I have had much success with my thyroid problems due to taking manganese and b2 and have no hypo symptoms left and have stopped hormones. See B2 I love you! and Mineral Hair Analysis.

    good luck!
    Athene likes this.
  18. brenda

    brenda Senior Member


    The most success with antibiotic treatment for Lyme is with these early cases. Once past that stage antibiotic treatment is much less successful due to the progression of the disease to the conversion into cyst forms when the bacteria is under attack. Once the attack is over the cyst forms will convert again and reproduce.
  19. Athene


    Hi Brenda,
    I have acquired some extreme nutritional deficiencies as a result of lyme over the years.
    I've also got thyroid deficiency as a result of lyme. Can you point me/link to any more info on how manganese and B2 relate to thyroid function?
    I know I should read the whole B2 thread, but it is very long and I can only handle computer screens in very short bursts lately.
    Many thanks!
    brenda likes this.
  20. brenda

    brenda Senior Member

    Athene I`m afraid I`m not up to searching today, perhaps tomorrow

    best wishes

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