Strange 'Atypical' Symptoms - Any Idea What's Going On?

Discussion in 'Symptoms' started by DDawn, Mar 28, 2016.

  1. DDawn

    DDawn New Member

    My son was diagnosed with ME when he was 13. His had an acute onset after multiple viruses - that last kicked off full blown ME. Acute headaches, aching joints, muscles, weakness, light intolerance, sleep patterns all over the place, inability to concentrate etc etc you all know the symptoms!!

    The up shot is that he was unable to walk more than a few steps ( I had to carry him up and down stairs on my back) and used a wheel chair for 2 years. With good management he gradually improved and by 15 was back at school - with the usual relapses if he did too much. He continued to improve and got back into scuba diving and even took up surfing (we were living in Oz at the time).

    He managed to get good grades at school and came out with a Diploma in Sound Engineering, and also managed and performed in a rock band - composing the songs. So he is a pretty smart cookie despite disrupted education and being moved around the globe. For a person with now mild ME he was doing pretty well. but any extreme cardio - such as trying to go for a run' would knock him completely out.

    Now things get complicated. Approx 2.5 years ago he once again got sick - some friends brought heavy colds into the house! His energy levels dropped and he had to finish his college course part time. At the same time he changed his diet and lost approx 12 kilos very quickly.

    Prior to this he had been experiencing periods throughout the day which he attributed to 'low blood sugar', when he felt spaced out and everything just got too hard to do. At that time he tried counteracting this with food - which he found didn't help and hence then changed his eating habits - more or less Paleo, cutting out carbs.

    So what is happening at the moment? He is now nearly 23 and finding it difficult to function normally. His hormones have been all over the place - stress hormones high, then low. He has next to no testosterone. Thyroid is on the low side of normal. His blood pressure and pulse have been so low that the teil table had to be reset as the alarm kept going off when he was hooked up!

    In order to kick start his day he has to do press ups to get the blood flowing to his body/brain in order to even get moving. During the day he has periods where he feels like he is waking up from anaesthetic/brain fog/walking thro treacle, and he 'spaces out' - this has happened when he was driving and that was scary. He feels like any breath he is taking in doesn't have any oxygen in it and that his body is fighting to get what O2 it can from his blood.

    So in order to snap himself out of this he then takes him self off and does around 100 pushups in sets of 3, this gets him going again until the next time - which in turn is wearing him out and the opposite of orthostatic tachycardia.

    He has to stand all day and often moves to keep himself alert. His sleep is poor, he takes meds every night to get to sleep, but his sleep is still unrefreshed and broken. He has difficulty regulating his temperature - cold sweats and really cold extremities. His legs and hands cramp regularly. Fluorescent lighting affects him as does excess noise. He has the mask like pattern on his face and his eyes are purple and sunken. He often has pallor.

    He was prescribed a mild anti depressant to help raise his BP - this made him feel worse - more sweats and sleepless nights. He has been on various therapies to raise his testosterone - his levels have gone up but made no difference to his ability to retain muscle/build muscle, nor his libido - he is completely disinterested.

    Have tried the usual vitamin/mineral supplements - tried Dr Sarah Myhill's mix for a while but did not see an improvement. Magnesium and potassium help the cramps. Vitamin B12 injections didn't seem to make a difference.

    He is not lazy and desperately wants to work full time ( he is applying for University but is not sure he will manage...) He has done a number of short courses and during any theory parts he had to keep leaving the classroom to do exercise in order to concentrate. His cognitive abilities are not all they should be - this is demonstrated by the fact that he is unable to write songs the way he used to, and he can spend days learning a song, play it beautifully and 2 days later has to learn it all over again.

    He is also not depressed, just pissed off he feels knackered all the time - he has to go to bed around 9 - just when any friends he has are going out and partying! Despite all this he managed to become a PADI Open Water Scuba Instructor, and also completed a cookery course and a yacht safety course.

    He has had loads of blood tests , has seen a 'top' endocrinologist, also a neurologist, and a cardiologist - at the moment our GP is talking about a pacemaker to at least normalise his heart rate - but I don't think this will solve the problem. He is not anorexic - as the endocrinologist first tried to jump on - just careful what he eats as he has found a diet that works for him. He is slightly built but has body fat. He had a complete brain MRI. nothing remarkable but some shading that should be checked in 12 months.

    He is 3rd generation ME. His maternal grandmother (81) is chronic, housebound - ill for 40 years. Classic ME. A waste of a life. Myself, his mum, mild now. Bedbound for a few months in my teens and struggled with energy levels all my life. Finding symptoms coming back now I am post menopause and getting older. Mainly in the way my muscles are affected. My father now has Myasthenia Gravis - another horrible illness that is utterly debilitating - and he is finding it harder as he is my mothers prime carer.

    So could ramble on for ages but just wonder if anyone can shed any light on what could be happening with my son - he really wants to get on with his life, and he does not fit the 'classic' ME any more????

    Blood tests and other test results can be supplied if anyone is interested!
    Last edited by a moderator: Mar 28, 2016
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    EYAKLLE Guest

    Thanks for adding this to the corpus of information. It will be very useful. Push-ups. Snapping out of it. Diet. Thanks again and good luck for what sounds like an awful time for you all. Something certainly does appear to have gone wrong over all those decades..which as u say now translates into non classical ME. What are the grandma symptoms n your symptoms? What were the triggers?? Hope u manage to find answers for the entity/ies of your symptoms complaints.

    EYAKLLE Guest

  4. DDawn

    DDawn New Member

    My mother now is very frail, no muscle nor strength. All I think attributed to years of loving with severe ME. Her brain does not function very well at all and is getting steadily worse. She manages to 'get up' around 2pm - i.e. come downstairs on her stair lift, and spends the rest of the day on the couch. She hasn't been able to bathe herself nor cook for years, my father has done all of this. She has not left the house now for 4 years. She was doing OK, although in a wheel chair, until about 8 years ago when she had a fall - or a minor stroke, not sure and compressed her lumbar spine. Since then she has just deteriorated. She got sick in her 40's after a virus I think - so long ago I cant remember. Got better and then pushed herself too hard and ended up in a wheel chair.
    Me, was stupidly anorexic as a teenager and collapsed when actually putting weight back on! This was the start I think. Damaged my cognitive abilities and energy levels.
  5. IrisRV

    IrisRV Well-Known Member

    @DDawn, it sure sounds like some form of dysautonomia -- probably of the OI variety. It's pretty common in ME and develops later in the illness for some people. Not all OI is classic POTS. Hypovolemia is fairly common in ME. There are DIY ways to do preliminary checks for some of the variations of OI. You'd need a knowledgeable doctor to make a definite diagnosis, though. Knowledgeable is the keyword here. There are also some DIY treatments for milder forms of some types of OI.

    If you haven't already, you might want to check out DINET, the Dysautonomia Information Network.
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  6. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    He's got to get on tilt table and be checked out for postural orthostatic tachycardia syndrome (POTS) and other forms of orthostatic intolerance. I would be shocked if he doesn't have some form of OI.

    There is a home OI test he can try - check out Dr. Bell's home test in the Orthostatic Intolerance Resource Section on this Forums here - - but in order to get drugs that might help he probably needs to get that tilt table test done.

    I imagine that he should focus on getting his blood volume up - see more resources in that section. It would be good if he could get off that job that requires him to stand all day.

    I hope that @Issie can comment on your son's case.

    I'm going to present a similar story probably tomorrow of someone with low blood sugar problems and OI...I think that's probably pretty common in ME/CFS/FM....although I don't have a clue what the connection is...
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  7. Who Me?

    Who Me? Well-Known Member

    Thanks for this. Slim pickings.
    IrisRV likes this.
  8. IrisRV

    IrisRV Well-Known Member

    Thanks for that, Cort! I've been meaning to look for that article here at HR. It's remarkably useful. I often pointed people to your similar article at That Other Place so I'm glad to see it here as well.
    I agree.

    @DDawn, one rough and dirty way to see if hypovolemia (low blood volume) is a problem is to measure his blood pressure and subtract the diastolic from the systolic. This is called the pulse pressure. 40 is normal in a healthy person. 30 is abnormally low. 25 is considered extremely low. This is a rough test, so don't take it as perfectly diagnostic. However, you can bet if his PP is 30 or lower, he has some serious problems.

    IMO, Cort is exactly right -- a job standing is not a good idea for most PWME, and certainly not good for someone with OI. Since your son's symptoms sound very much like OI, a break from that job is a good idea. Changing jobs sounds even better. :)
    Who Me? likes this.
  9. Remy

    Remy Administrator

    @DDawn, I'm wondering if you've had him do 23andme, since there is such a strong genetic link in your family?
  10. IrisRV

    IrisRV Well-Known Member

    There's a strong genetic link in my family, too. What are we looking for in 23andme results?
  11. Remy

    Remy Administrator

    Just anything unusual in common that might highlight potential areas of weakness that might lead to symptoms.
  12. Merida

    Merida Well-Known Member

    CFS/ME also runs in my family. My Mom had it for as long as I remember. My son got it at age 5 /1986 after a well documented case of EBV. He had many of the symptoms you mentioned and also extreme urinary frequency for a number of years. He still has some symptoms at age 35 but is doing okay.

    All of the comments about POTS/ dysautonomia seem right on. I have dx with these. The only thing I can add is please check out everything you can on Chiari. These people typically have dysautonomia. I saw a neurosurgeon expert and had a CINE MRI flow study. Yes, very abnormal CSF flow from brain to spinal canal. This creates pressure in the brain stem area and all the symptoms we have. I do not have a typical Chiari, but I have a small space at the base of my skull/ short clivus/ small occiput. This is typical for Chiari patients. A lot of controversy in neurosurgical community about Chiari O. Chiari issues do run in families.

    Also please check out Dr. Diana Driscoll's comments. She and at least one of her kids got Chiari type symptoms after a viral infection. They were offered surgery, but got very well on Diamox, which slows spinal fluid production, and thus decreases pressure in the lower brain.

    Also, does your family have any signs of hypermobility? Ie Ehlers Danlos?

    If scoliosis runs in your family, the risk for Chiari and Syringomyelia is increased. Our family has scoliosis - my Mom, her cousins, me, my son. Researchers have been trying to understand the association between scoliosis / Chiari, but no conclusive answers yet. Also, please read about tethered spinal cord - another associated glitch.

    What a journey. Hope you find some answers. Hugs.
    Remy likes this.
  13. Issie

    Issie Well-Known Member

    DDawn, so sorry to hear about your son and what he is going through. And also about the family connections. I can so relate and you could have been writing my story and that of my family. It for definite sure, sounds like a form of dysautonomia - of which there are many subset forms. The high catachlomines with standing (depending on high high they go from lying to standing) can determine if his subset type is HyperPOTS. With this form we (including me) have very high NE (norepinephrine) and usually along with it comes some pretty uncomfortable tachycardia. It is felt this is probably a compensatory response to get the blood to go to our heart and head. As these are very vital areas to have blood and it may divert it from our extremities. This can make one feel very faint, dizzy, naseaus and have some pretty bad anxiety. But it's absolutely necessary to keep us alive. It is thought that we have low oxygen levels due to the lack of blood flow. Some of us have apena and none of us seem to breathe properly. With the type of POTS I have, I tend to have higher blood pressure, but I still have the orthostatic drops that cause the surge of tachycardia to bring up my pressure. Not all have the severe drops in pressure and seemingly smallish drops can trigger the autonomic nervous system and we have this response. Some (and more common) have lower blood pressure and faint with these drops. Thankfully I've only fainted twice, but I have enough symptoms to alert me to get down before that happens.

    With the HyperPOTS subset, also seems to be with many of us, what we call the trilogy. We have MCAS (mast cell activation syndrome). This is very unpredictable and is not a true allergy, but an over response or degranulation of mast cells. This can cause anaphylaxis. It can be triggered by strong emotions, physical activity, over heating, foods etc. You may be fine one time and react the next. It can cause symptoms of hot flashes, flushing, and with it severe anxiety and feeling like you can't catch your breath. Many of us have epipens on hand, just in case. But many of us can keep things managed with H1 (Allegra) H2 (Zantac) antihistamines and mast cell stabilizers (GastroCrom).

    And the third part of the trilogy is (EDS) Ehlers Danlos (usually EDS3). EDS can be tested by genetics, except for the EDS3 form and it is sometimes refered to as Hypermobile Joint Syndrome. This can cause all sorts if issues. Many of us have lots of pain and get osteoarthritis at young ages. We tend to be the ones as children that were easy to turn our ankles and seemed to always have a bruise somewhere. Many of us have subluxations of our backs, shoulders, neck, fingers etc. We get good at putting things in and being very aware of how we sit, stand, and sleep or else we are out and in pain. This can also cause issues with the veins. We are over stretchy and our veins can be too. However, (and this is odd) with me, I do better using things to vasodilate (but not to much) rather than vasoconstrict. And I'll explain why I think this a little further down. Not all POTS people can be treated the same. What works for me, will not work for someone else. Sadly, many docs are still not aware of this fact and they give all of us the same meds and same instructions. But, that can be diasterous for some of us when our subset type hasn't been properly determined.

    A little history - mine goes back 4 generations, that we know of. My grandmother we are quit certain had POTS and EDS. My mom had EDS and MCAS. My sister has severe CFS and is in most all the research studies that are in progress, right now. She also has severe OI (orthostatic intolerance) to the point of her heart stopping on her tilt table test - 3 minutes into the test. Her kids have EDS, MCAS, and POTS. I have all three of those things and many autoimmune problems - including hypogamaglobulinemia. So you see it can run in families. And like you, my sister had anorexia. Our family has been asked to be in the genetic study that is going on for CFS. The boys are not yet old enough for consent and so far, we don't have approval for them to be accepted yet.

    There also are methylation issues involved in our family. MTHFR and other mutations involved in this process. This would be worth taking a look at. Treatment fory mutations have helped me alot. This was also a family issue. The child born before me had spina bifida. A sign of Folate methylation dysfunction.

    The other thing to consider is vaccines. My sister and I started manifesting more issues after polio vaccines. This was back in the 60s and there was a big cover up in regard to these vaccines. But there seems to be other vaccines that some have connected to their children seeming to get worse after them.

    The other thing I have found with myself is I have Lyme and coinfections along with another protozoa called Protomyzoa Rehumatica. This last protozoa can be gotten by mosquitoes. Makes you think of the new Zika virus. (Just announced today they have the first case in AZ. I don't need any more protozoa/viruses from mosquitoes.) My doctor feels alot of the symptoms I have of POTS is connected to these protozoa. They form biofilms in the veins. Biofilms are a protective housing for pathogens, virus and bacteria. (Dental plaque is a biofilm.) They attach to the vein walls and can affect function of veins and blood flow. He (Dr Stephen Fry ) recently released a paper in London. They analyzed plaque pulled from a heart bypass and found these protozoa in it. I feel part of my dysfunction of blood flow is connected to the biofilm and what it houses because of the effect they have in the veins. That, I feel, is why dilation helps me. But ultimately, the problem is - my immune system isn't working properly. If it were, it would detect and fight these things off on its own. But it doesn't. Getting the immune system to recognize these organisms and breaking down the biofilm so it can recognize and destroy - seems to be what is helping me the most. I was on low dose Doxycycoline and antimalarial herbs for years. Now I'm doing it with herbs and essential oils. I'm also finding cleanses to be very helpful. I became a lower fat, Vegan. That reversed Chronic Kidney Disease from stage 3 to high range normal. For those having chronic Lyme it has recently been found there may be issues with mold. This is my latest discovery. A thyroid biopsy of a growing nodule - has found mold in it that causes tumors in the body. My cleanses are addressing the mold and other pathogens.

    It makes sense that exercise helps your son. If there is pooling in his legs and possibly dysfunction of his veins either because of EDS or Biofilm, he could have high catachlomines of NE to make his heart increase pumping to get his blood up to his heart and head. If he is getting horizontal and exercising he is shifting his blood out of his feet aiding his heart in pumping with the exercise and he gets better. Until he stands in one place too long, without moving and it starts all over again. It can cause severe brain fog and just generally a sick, anxiety filled, panic feeling. With tachycardia, shortness of breath and likely alot of weakness. If EDS is involved there is pain and lack of endurance. And if MCAS is involved we react to everything out of the blue with no rhyme or reason to it. There is PEM for sure and yes there is fatigue. If your heart is running away with you, it's like running on a treadmill from sitting to standing. If we stand you will see us dance. We move around, sway and just generally can't stand still. We have to keep our blood moving while upright. You may see us fidget while sitting too. The leg shake, tapping feet, fidget. Again, us compensating for blood flow issues.

    I feel there is also issues with low testosterone for guys. Many of us POTS girls have had endometrosis and that is thought to be an estrogen dominent issue. (Has the balance between testosterone to estrogen been checked?)

    There may be a connection to dopamine and glutamate as well. I've written quite a bit on the DINET site about those things. As well as here on Cort blogs and forums. I personally feel there may be too high glutamate and that may be more of an issue with POTS, than what was previously thought. NE, I feel, is necessary as a compensation. Lowering my high level was a diasterous experience. Many times, what we consider as symptoms are the bodies compensation for another problem. If we stop our body from compensating for whatever the "cause" is, that will cause us worse dysfunction.

    I could keep going, but you get the jest of what may be the issues. I'm glad that DINET was suggested. Go on there and search topics. Lots of the more technical things were discussed several years ago. Many of us that researched alot are no longer there. But you can do a search on the profile of those you may like to read about, what they have researched and what they have to say. I still visit there, but seldom participate. Also Healthrising blogs and forums have some very good comments, research and information about these things. Cort wrote to asked me to comment on this thread. I hope some of this will be helpful.

    Last edited: Mar 29, 2016
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  14. DDawn

    DDawn New Member

    Cort, he had the tilt table test done here in Dubai (not convinced that they were very good at it tho!) It was negative. At the time at the start of the test they had to sestet the monitor as the alarm bells went off as his rest pulse and heart rate were so low, There were no noticeable increases/decreses upon being raised to an upright position.

    He is not in work. He stands all day purely as a preventative measure to stop the horrible waves of brain fog/spaciness - if he relaxes and sits down that is when he starts to feel worse. He has to constantly be doing something as if to keep his blood circulating.
  15. DDawn

    DDawn New Member

    He has been checked for Ehlers Danlos. I am hyper mobile, he isn't particularly. Will look at the Chiari info
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  16. OK. Here's what's going on and what you need to do. Kim isn't writing this, because she's so sick right now, so I'm doing it for her. (I'm her sister Kelly.)

    Your family history and the story of what's been going on with your son is so similar to ours, it's kind of spooky. Our maternal grandmother died in 1979 at the age of 69 after being bedridden for 10 years. She was never diagnosed with ME, but we are convinced she had it because we recognize the symptoms, which I won't list right now. Our father had Myasthenia Gravis. Mom has lupus, Sjögren's Syndrome, RA and she had Rheumatic Fever as a teenager. It is important to understand that all of these diseases, including ME+FM are autoimmune and genetic. This family history of autoimmune disease is extremely important to understanding the cause and treatment of ME.

    First, tell your son to stop exercising! He is filling his body toxins when he does so. I know he feels this is the only way to get his body going. He needs to take some down-time. He's going to have to learn to listen to his body and give in and rest when he has a flare or crash. He's got to realize he is never going to be able to handle a full schedule or keep up with his friends, or healthy people. It's frustrating, even infuriating, but it's just the way things are. He can't power his way through. While he's resting, in bed or on the couch, he should do something that he enjoys. If he only has the energy to watch tv, he should watch something he finds interesting or funny.

    To get himself going in the morning, start off first thing with B12. We keep ours by the bed and put it under our tongues before we even get out of bed. He should start with methylcobalamin until he knows whether or not he needs the hydroxy- or adenosylcobalamine. See my comments below for more on this. He should take 5000 mcg (5 mg) if he can tolerate it. Amazon or Vitacost are good sources. If you get it at Vitacost, we don't recommend the Vitacost brand because it tastes horrible. Also, he might try D-Ribose. We use Source Naturals D-Ribose 1000mg. A high protein breakfast is essential. We always have a big mug (12 oz) of a combination of organic 1% milk and Soy Dream, with cacao powder (cocoa powder that hasn't been processed with alkalai) and some additional protein. I use whey, Kim has been using hemp because Amy Yasko says whey is a problem. I can't use hemp, so I'm sticking with the whey. The cacao is important because it's a good source of magnesium which is vital for ME, and it has other health benefits. If he goes with the cacoa, he might also want to consider rutasomen. The caffeine in the chocolate is a vasoconstrictor, the rutasomen helps flush the caffeine out of the system faster. Also see comments under genetics for more one this. Yasko also says gluten is a problem. Kim's been gluten-free for several months now, be she hasn't noticed that it's made any difference.

    There are several things that could be causing what he feels is improvement because of the exercising. One key is cortisol production. There used to be an OTC product called IsoCort that was herbally derived isocortisol. Kim and I took that for over 2 years without adrenal fatigue and it made a huge difference in our energy level. Dane Cook has noted in his research that ME patients when PENE (post-exertion neuroimmune exhaustion, because we refuse to use PEM - post exertional malaise), they are unable to produce cortisol. Cortisol is usually viewed as a bad thing, but we have found isocortisol to be very helpful. The FDA took IsoCort off the market, but it is apparently possible to get it at a compounding pharmacy if you can get a doctor to write the prescription. We were taking 3-4 6 mg tablets a day, in the morning. Dane Cook and others have said cortisol supplementation and steroids like prednisolone cause adrenal fatigue. We agree that hydrocortisone causes adrenal fatigue, but isocortisol and prednisolone do not. Kim has been on prednisolone since November and has not had any adrenal fatigue. She is currently taking 40 mg a day and it has improved her ME+FM+sCRPSs3+SPS, although she is still very sick. In her case, it seems the 40 mg is still not enough to control the autoimmune war that is going on in her body.

    Kim and I went to a Naturopath. Kim's T3 (thyroid) was just below the lower limit of normal. The Naturopath put her on a product called Cytozyme-AD because he said it would help her body improve her thyroid levels. She hasn't had another blood test, but the related symptoms she was experiencing have gone away. We get the Cytozyme from our NP, but I think you can order directly from the manufacturer, Biotics Research. He said it didn't do any good to take T3 or T4 because that just makes your thryoid cut down on how much it's producing and you still end up with not enough, but the Cytozyme encourages your body to make more on its own.

    Next, the antidepressant. We recommend your son have a blood test called Cytochrome P450, and that he have his DNA analyzed at 23andMe. Once you have your DNA raw data, go to Amy Yasko's website Know Your Genetics and get her MPA report using the 23andMe raw data. Another very useful website for DNA analysis is SNPedia. The Cytochrome P450 test will duplicate some of the 23andMe test, but you'll be able to get the results more quickly. We wouldn't be at all surprised if the Cytochrome P450 shows your son has two CYP2C9 alleles, like we do. We also both have a mutation of the MAO A gene (SNP rs6323 variation R397R) with a base pair of TT. (This was first brought to our attention from the Yasko analysis, but the information can also be found at SNPedia.) What all this means is that for us, any medication that increases serotonin puts us into serotonin overload. We do not metabolize the serotonin our bodies manufacture, so it sits there. In a way, we are already taking an antidepressant in that we already have more serotonin than normal. Kim was put on antidepressants in 1985 and kept on them until 1996 (first a couple of TCAs, then an SSRI). Despite the fact that she kept telling the doctors she thought they were making her worse, they kept insisting that she stay on them. In desperation, she finally bought a book on how to take yourself off an SSRI. This book was written by a woman who had a PhD in Public Health, not a doctor but her method worked. I wasn't able to find that book, but Amazon has a Kindle book The Soft Landing Method for Quitting Antidepressants - A gentle, science-based program for quitting antidepressants, minus the crash for $2.99. I don't know if your son is taking an SSRI, but I would imagine their method would work for any antidepressant. Basically, you have to taper off the antidepressant dosage very gradually. By very gradually, I mean even shaving a small bit of each pill, gradually increasing the amount you shave off. If you are uncertain whether it's a good idea to discontinue the antidepressant, you might want to wait until you get the results of the Cytochrome P450 and or the 23andMe test to see if your son does indeed have these genetic problems. I wasn't kept on antidepressants like Kim was, but my experience at trying them was just as disastrous.

    A warning about Amy Yasko's nutrigenomics program: Although we found her DNA analysis very helpful, her diet was a disaster and her supplementation program is problematic at best. Use your results to make sure your son is taking the right kind of B12. Your son's instincts about the high protein diet are excellent. We've found high protein (at least 1 g of protein for every 3 grams of carbohydrate, and strict reduction on the starchy, sugary carbs) to be essential. We use Alive Multivitamin and a bunch of other supplementation that would be a topic for a whole other blog. Cort has already done some articles on this topic. I can use methylcobalamin B12, but Kim has to use hydroxycobalamin and adenosylcobalamin (aka dibencozide). B12 is essential to the neurological problems ME causes.

    Cort has asked Kim to start writing a genetics blog for Health Rising so that we can share this information and much more we have found in investigating our DNA. She has been really sick and has had a great deal of difficulty getting a doctor to treat her - but that is a whole other story. Hopefully we'll be able to get her stabilized and she can start writing the blog, because we've found a lot of genetic information that has been very helpful to us. In desperation, I wrote a letter to a retired ME specialist who lives near us, and last October he started treating Kim and I, whom I will call Dr. B. His help has been vital, but Kim as still continued to lose ground. She has ME+FM+sCRPSs3+SPS (sCRPSs3-systemic Complex Regional Pain Sydrome, Stage 3; SPS-Stiff Person Syndrome). The sCRPSs3 and SPS may have occurred as part of the progression of the ME+FM, but they may also have been caused or at least exacerbated by the fact that she couldn't get a doctor to treat the ME+FM. She has been waiting since May 2013 to see Lucinda Bateman, MD, but Dr. Bateman still has not found time in her schedule. The retired ME specialist has helped, putting both of us on some fairly basic, standard ME+FM drugs: clonidine (pain control, adrenergic receptor blocker, FM), tizanidine (pain control and muscle spasm contol FM, CRPS, SPS), amantidine (reduces fatigue and autoimmune process), nitrostat (vasodilation, pain control), and memantine (glutamate inhibitor FM, CRPS). He added prednisolone for Kim in December, but increased the dosage to 40 gm in February, along with increases in clonidine, tizanidine and memantine. Clonidine is more often used as a hypertension (high blood pressure) medication, but it stabilized Kim's blood pressure which was all over the place. Her pain level has been in the 9-10+ range for almost 3 years now. When the pain gets up toward 10, her blood pressure goes up, sometimes as high as 165/95. When this happens blood pressure medication doesn't do anything. Only pain control drops her blood pressure. Like many ME patients, sometimes her bp in too low. We've both measured in the 90/60 range on many occasions. So clonidine should be used with caution, but it's helped us.

    Next is vasodilation. The first the the retired specialist did when we went to see him was give us each ½ a nitrostat. We were amazed at the immediate improvement in our pain level. He then told us to take the other half, and that helped even more. The problem with nitrostat is that it will quit working if you take it too often, so it's only an occasional solution. Some doctors have started using sildenafil (Viagra) and tadalafil (Cialis) for ME, but if your son does have the CYP2C9 alleles, he won't be able to take them. Read Cort's article Lending a Hand: the Avacen 100 for Fibromyalgia? We bought an Avacen right after his article was posted and it has literally saved Kim's life. It's not cheap, but it's been worth every penny. Kim has been doing 8 30-minute treatments a day. Another vasodilator that Kim has been using during the night is Douglas Labs - ATP-20 sublingual tablets. Kim takes them 3 at a time 3 times during the night. There are other ATP products at Amazon, but we use ATP-20.

    The testosterone is more difficult. ME is notorious for screwing up hormone production of all kinds. Since we are both female, we're only familiar with how to cope with that problem. We have found that bioidentical hormone supplementation is essential. He might try a pregnenolone supplement. Wikipedia says "Pregnenolone (3β-hydroxypregn-5-en-20-one), also known as P5, is an endogenous steroid hormone. It is the precursor of the progestogens, mineralocorticoids, glucocorticoids, androgens, and estrogens, as well as the neuroactive steroids. In addition, pregnenolone is biologically active in its own right, acting as a neurosteroid." (Wikipedia article on Pregnenolone.) That means pregnenolone works for men and women and the neurological and corticoid support are ideal for ME. We use Source Naturals Pregnenolone 50mg. When I looked at Amazon for bioidentical testosterone the only thing I found was BRI Nutrition Testosterone Booster - Testrone All Natural Supplement, but I would research the ingredients carefully before using it. A Naturopath might also be able to help.


    Kim and I had a really good ME specialist from 1990-1996, but have essentially been
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  17. Oh Heck! The above got posted before I was finished! So I'll continue in another post that I will hopefully finish today!
  18. Issie

    Issie Well-Known Member

    My mom also had Sojourn and I have hypogamaglobulinemia, vitiligo and alopecia. There are some scary genetic markers for some rare illnesses in my family too. I've often said, I feel the bottom line is autoimmune dysfunction and inflammation.

    Last edited: Mar 30, 2016
  19. I'm guessing your son has the POTS variety of ME, rather than the neuroinflammation variety? So he may not need the emphasis on neuroinflammation that we need. John Chia, MD says he's had success with a product he's made called Equilibrant. Kim and I can't take it because it has astragalus and licorice root in it. We suspect its another CYP2C9 problem because they cause tachycardia and hypertension. Some people have found it helpful.

    Brain Fog - The Japanese and Europeans have been using citicoline to treat stroke patients for at least a decade. We've been taking Vitacost Neurocholine w/Cognizin® Citicoline. (Vitacost has a subscription system so you can set all these things up so you get them regularly without having to reorder all the time. Amazon has subscriptions on some things.) Citicoline "supports memory and cognitive function for healthy mental performance. Helps protect and preserve neural tissue for optimal brain health." (Usual disclaimer - These statements have not been evaluated by the Food and Drug Administration.) Grapefruit essential oil has nootropes in it, so breathing in some of that can help clear your head. Kim uses it when she gets the "sleepies" during the day. Not sleepy enough to take a nap, but so sleepy that she's miserable. The grapefruit oil can help wake you up, but see comments on napping under Sleep below. I didn't get to mention that we both also take baclofen. Kim takes a whopping 70 mg a day. I only take 20 mg. Kim has found it helpful for the pain, but it also helps her with brain fog. More than 20 mg puts me to sleep.

    Sleep - Kim has talked to Cort about posting a guide to OTC (over-the-counter) sleep remedies, but it looks like I'll do that here. Basically we're talking melatonin, l-theanine, l-tryptophan, valerian, passiflora (passion flower), scull cap, 5-HTP, mucuna (herbal dopamine), hops, and wild lettuce. Chamomile might also be added to the list, but we're both very allergic to it. Kim also takes a smaller amount (150 mg) of l-theanine during the day as well. Cort already published another sleep blog that mentioned Enzymatic Therapy Revitalizing Sleep which I still use, but Kim has had to move on to getting the ingredients separately as listed above. Melatonin - I can't take any melatonin. It makes me dizzy and loopy the next day. Kim was told by a neurologist to go up to 8 mg a night. She's using a time-release 3 mg (link above), and she how takes 4 spaced throughout the night. L-theanine - Kim is taking 5 200 mg tablets (link above) spaced throughout the night. L-theanine does several things. Search Health Rising for "anxiety" and the Yasko materials and you'll see why l-theanine is important. Valerian - Yasko says valerian is an important precursor to GABA, which is often depleted in ME and encouraging it's production is essential. Scull cap - is also an anti-inflammtory. 5-HTP - not all 5-HTPs are created equal. Different people will respond better to different brands. The link above goes to the only brand that works for us. 5-HTP does a number of things. It's also vital to GABA production, is neuroprotective and helps neurological repair. Mucuna - also helps with mood. Kim found out in her Yasko genetic analysis that she strips dopamine out of her system like crazy. We both have trouble with Restless Leg Syndrome and mucuna is a non-prescription way to treat that. Kim takes a lot more than I do, but her system flushes it out at a much higher rate. With all of these, start at a low dosage, preferably one at a time. That's frustrating, but if you're going to have a problem with any of them, you need to know which one is causing the problem. We had to go the OTC route because we couldn't find a doctor who would help us, and we can't take any of the serotonin manipulators like tricyclic antidepressants (TCAs), or serotonin–norepinephrine reuptake inhibitors (SNRIs) that doctors usually prescribe. Kim is using 7.5 mg (one dose of 2.5, one of 5 mg during the night) of diazepam (schedule IV) right now to make sure she gets at least 7 hours a night, but she was just using the OTCs above before her most recent decline.

    Toss out all that garbage that the sleep specialists are touting: no tv, music, reading for 2 hours before you go to bed, no naps during the day, use the bedroom only for sleeping and sex, keep the bedroom completely dark. Use the bedroom only for sleep and sex - ME people should be so lucky! ME people don't have trouble sleeping because they're undisciplined. We have trouble sleeping because our sleep chemicals are totally screwed up. If you need to nap during the day, then nap during the day! Get sleep when you can! Having said that, finding a good regime of sleep aid medications can help get you on a more normal sleep schedule and reduce sleepiness during the day.

    I also wanted to mention that we use Alive multivitamin because the ingredients are derived from food, rather than being a processed chemical soup. It's the only multivitamin we can take. All other brands cause major stomach upset. Alive has some ingredients that Yasko doesn't like, but for us it's the best fit. A zinc supplement is also a good idea. So is a magnesium one, if you can tolerate it. We can't so we have to rely on food sources and Alive (also a food source).

    Some other problems with the Yasko approach.
    Prescript-Assist Probiotic is a safer probiotic for ME. Lactobacillus acidophilus can cause your body to make even more lactic acid. Cort has written extensively on the dangers of lactic acid. Here are three journal articles on the topic:
    A Stand-Alone Synbiotic Treatment for the Prevention of D-Lactic Acidosis in Short Bowel Syndrome
    Int Surg 2013; 98:110–113
    Probiotics Provoked D-lactic Acidosis in Short Bowel Syndrome: Case Report and Literature Review
    J Paediatr 2006;11:246-25
    Increased D-Lactic Acid Intestinal Bacteria in Patients with Chronic Fatigue Syndrome
    In Vivo 23: 621-628 (2009)
    You can search for them at PubMed.

    We found that cutting out the food sources of glutamate that Yasko advocates was a disaster. Kim did find that cutting back on calcium supplementation made a difference in her pain level. She's now making sure she only supplements in very small amounts throughout the day, and just enough that she is getting 100% of the daily requirement.

    Yasko also advocates boosting T-cell and B-cell production, but there has been evidence that ME people often have elevated levels of certain types of T-cells, and that B-cells can be a problem (hence the success with Rituximab). So we don't recommend boosting those.

    Some other comments on diet. Starches from potatoes and rice are better than starch from white bread. The more processed something is, the more problems it causes. The same goes for added sugar. Evaporated cane juice is better than standard processed white sugar. If you use brown sugar, make sure it's real brown sugar. The stuff you get at the grocery store is processed white sugar masquerading as brown sugar. Eliminate corn syrup. We happen to agree with Yasko on dextrin, dextrose, maltodextrin, and MSG. There are a number of natural sugars that have a low glycemic index: stevia, xylitol, sorbitol, mannitol. If you drink fruit juice, drink organic and the kind that doesn't have any added sugar, especially added corn syrup. Organic juices that need sweetening are usually sweetened with one or more of those natural low-glycemics or with white grape juice. None of the popular soda drinks. Health food stores often carry carbonated fruit juice, if you need a substitute. Also, make sure your son is getting enough sodium and potassium. Use sea salt and Morton's Lite Salt (half sodium chloride, half potassium chloride). He should drink lots of water, but make sure he gets plenty of sodium and potassium, too. You might check his blood tests to see if they checked his sodium and potassium levels. I don't suppose they checked his ferritin levels. That's the best indicator of iron levels. Jacob Teitelbaum, MD says if your ferritin level is below 50, you need to supplement. We use Bariatric Advantage Iron Chewy Bite Chocolate Raspberry Truffle That's way above "low normal". Dr. B told us to look at the blood tests very carefully. ME people can be within the "normal" range and still be in trouble. Look at the ones where your son is close to the high or low end of "normal".

    Your son's brain MRI. Dr. B also told us that he found out that there is a big result on brain MRIs in ME people that is completely ignored. Find out if his MRI showed white spots in his lateral ventricles. Dr. B talked to a radiologist in California, I don't remember which one, who was doing research on brain MRIs in ME and he said many showed these white spots, but radiologists in general don't know what they mean - so they read them as normal! There have been more studies done lately on blood tests that actually show the autoimmune processes that are going on in ME, but they aren't standard, available tests. All our blood tests come back normal because the doctors don't know how to read them, and the right tests aren't yet available.

    We agree with the other posting that your son has dysautonomia, but that is a hallmark of ME, and the problem is far more complicated than that. I've probably gone on long enough now. There's still probably some stuff I haven't included. I hope this helps. I'll try to keep an eye out for this thread in case you have questions.
    Kelly Derrick with Kim Derrick's help
  20. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Thanks for all the info Kelly!
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