tag:blogger.com,1999:blog-22576999.post2069625264247901143..comments2024-03-16T10:39:00.522-04:00Comments on Live With ME/CFS: The Methylation Cycle: Central to ME/CFSSue Jacksonhttp://www.blogger.com/profile/14532098225905355332noreply@blogger.comBlogger23125tag:blogger.com,1999:blog-22576999.post-86461704858153024502020-11-07T15:52:06.503-05:002020-11-07T15:52:06.503-05:00Angie -
Glad you found it! Yes, trying one thing...Angie - <br /><br />Glad you found it! Yes, trying one thing at a time makes good sense, so you can separate cause and effect and know what helps or what causes side effects. <br /><br />Behind the UK?? Wow, that would be REALLY behind, since the UK's NHS does not offer ANY real medical treatments - only therapy and exercise (which of course makes us worse), though the UK is currently working to update their treatment guidelines. Here in the US, it is only the top ME/CFS specialists on that list who really know how to treat the complexities of ME/CFS - most family doctors don't even understand it's an immune disorder. Those top experts may seem like a lot, but we are a huge country, and there are no specialists near the middle of the country - they are mostly on the coasts. So, we are mostly in the same boat - having to educate our doctors and ask for the treatments we want.<br /><br />Anyway, good luck with long-acting beta blockers and with inosine - let me know how things go!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-56109871402165528112020-11-03T18:18:07.376-05:002020-11-03T18:18:07.376-05:00Dear Sue,
Yes please do let me know if you find an...Dear Sue,<br />Yes please do let me know if you find any experts in Europe! Interestingly, when i was getting diagnosed at Charite, the doctor i saw admitted to me that in Germany they are behind the UK and the US in treating this disease...<br />I found the regular Source Naturals Inosine on Amazon.de - i had to do some digging - it didn't come up straight away in the search but i found it. i think it is older packaging but it looks right!<br />And thank you for the detailed instructions! i think i won't even start it until i have gotten used to long acting beta blockers first.<br /><br />Yikes, bedtime for me now! Have a peaceful election day!<br />all the best,<br />Angie<br />Angie Y.https://www.blogger.com/profile/09875700787548284393noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-68546642713702135152020-11-03T16:33:03.384-05:002020-11-03T16:33:03.384-05:00Angie -
Yes, that's the right approach - one...Angie - <br /><br />Yes, that's the right approach - one thing at a time :) Sorry to hear the Sweden clinic closed! Thanks for letting me know - I will update the list. And a quick search shows that Dr. Kenny De Meirleir is now working here in the US at the Whittemore Peterson Institute (still on ME/CFS). That doesn't leave many European options, does it?? I will ask around.<br /><br />I looked up Ultra Inosine, and I would stick with the regular to start with. The Ultra has loads of extra ingredients, and there's no telling what might help and what might cause a side effect. The Source Naturals brand is our favorite, but it has been back-ordered for a while now. I found some on iHerb last week - not sure if they ship internationally. Might just try a general search online and see which other providers come up. Sometimes Amazon has some brands of inosine available, so check there (we get 95% of our supplements from Amazon!).<br /><br />Once you get some, be sure to follow the dosing instructions carefully - always take weekends off and alternate "high" and "low" dose weeks. Start VERY low to see how you react, with just 1 pill Mon thru Fri morning, then a week off OR if you get the source naturals (which can be cut), cut them in half and alternate weeks with 1 pill and a half pill (always weekends off). After a couple of weeks, leave the "low week" low but try increasing the high dose week a bit. Very slow and very gradual.<br /><br />Good luck!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-34112944726739305012020-11-03T15:51:17.774-05:002020-11-03T15:51:17.774-05:00Dear Sue,
You are so kind to take the time to he...Dear Sue, <br /><br />You are so kind to take the time to help me! Thank you so much for the information.<br />Yes, now i see that i can order inosine here without a prescription! That's great. Right now from Source Naturals, only the Ultra-Inosine is available - i am guessing that i should wait until they restock the normal inosine?<br />That's also great to know about the salt, thanks.<br />And now i see the roadmap to all treatments, oh my, it's so much information - I will go through that slowly! I did check out the doctors recommended in Europe. Even Dr. Schiebenbogen is included there from Charite but as i said, i didn't find it helpful there. That's a shame because according to your notes, her interest lies in EBV and i have had a test by a functional medicine doctor that shows that i have antibodies to it...<br />And unfortunately, the clinic in Sweden has closed down and the link to the Belgian doctor is not functioning.....but perhaps i can go to the UK one day.<br />In the meantime, i will slowly start with what i can, one thing at a time.<br />Thanks again, take care,<br />AngieAngie Y.https://www.blogger.com/profile/09875700787548284393noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-8410570995209603852020-11-03T12:34:02.392-05:002020-11-03T12:34:02.392-05:00Dear NB -
Welcome! I'm so glad you found you...Dear NB - <br /><br />Welcome! I'm so glad you found your way here - better late than never :)<br /><br />Yes, long-acting beta blockers taken at bedtime are a great start. They will help to treat OI (which you definitely have) and will thus improve your exercise tolerance. Then starting a regimen to wear the HRM, stay below your AT, and begin - VERY slowly - to do some exercises while lying on the floor (just 5 min at a time always staying below your AT) and beginning to walk - again, very gradually and with the HRM.<br /><br />You are on the right track - I would definitely try to tackle immune dysfunction next since it is at the heart of the illness. Here, inosine is sold as a supplement and doesn't require a prescription. Is that not true in Germany? I usually recommend starting inosine first, for that reason and also because it often has the most dramatic effects. You can also begin to increase glutathione on your own, with all the precursors available as supplements while waiting to get the glutathione nasal spray. Sorry I don't know where to get GlutaQuick. Definitely start one treatment at a time so you can see how you react, what causes side effects, what helps, etc.<br /><br />Oh, and salt... only table salt contains iodine and it is added to it. Naturally occurring salt NaCl does not contain iodine. So, use sea salt or Himalayan Pink Salt on your foods, and salt supplements like Salt Stick or Thermotabs should be iodine free also.<br /><br />Have you sen this page on my blog? It acts as a roadmap to all the treatments, with links to more info.<br /><br />Nice to meet you! Let me know how it goes and if you have any other questions!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-36718654082626786412020-11-03T12:12:01.275-05:002020-11-03T12:12:01.275-05:00Dear Sue,
i am overwhelmed to tears to suddenly fi...Dear Sue,<br />i am overwhelmed to tears to suddenly find out so much practical information on cfs after 4 years with it!!! I am an American living in Berlin, Germany and was diagnosed at the Charite hospital here (a hospital that everyone thinks is so advanced) and then just given a piece of paper with a list of supplements and instructions to pace and that was that. <br />i have mostly been trying to improve my health by looking into my childhood patterns and meditating, etc. I have greatly improved but i haven't been able to cross the threshold into being able to do yoga again or to fully live my life really....and last year, to my dismay, i was diagnosed with Graves disease on top of it.<br />I just can't believe what i have been through without knowing any of the approaches you have suggested!! Tears are pouring down my face! I have seen so many doctors and health practitioners!!<br />Anyway, my question is that i don't know where to start - Do you know any cfs experts in Germany or Europe? <br />I have short acting beta blockers for the Graves disease since the hyperthyroidism makes my heart race at times. I see you recommend long acting ones so i will try to get them from my endocrinologist. i will also order a heart monitor right away and try to stay below my AT. But for the LDN and Immunovir and perhaps the nasal Glutathione, i will need a prescription. If i manage to get it from my family doctor (who has been useless), should i not start them all at once? If not, which one would you recommend starting with?<br />And about the salt, do you know if there are salt supplements without the iodine since i shouldn't have that with Graves disease? <br />Also, if you happened to know a website where i might buy GlutaQuick in Europe, that would be wonderful.<br />Pardon all my emotions and questions! I am extremely grateful for your writings. <br />Thank you so much, all my best wishes, Angie Angie Y.https://www.blogger.com/profile/09875700787548284393noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-51569196944811891372018-03-03T11:04:58.518-05:002018-03-03T11:04:58.518-05:00Hi, Dawn -
Endocrine abnormalities are an integr...Hi, Dawn - <br /><br />Endocrine abnormalities are an integral part of ME/CFS, so we both have had some at various points in the illness (low cortisol, for instance, is extremely common). Neither of us, however, has had any primary endocrine disorders, like hypo- or hyper- thyroidism, Hashimoto's, Addison's, or the problems you listed.<br /><br />Primary disorders like those I listed need to be addressed directly by your doctor; however general abnormalities in the endocrine system will often normalize as you treat various aspects of ME/CFS - like methylation, immune dysfunction, OI, and correcting sleep dysfunction. Each of those approaches will naturally help to bring the endocrine system back to normal - ours is a very complex illness and all of these pieces are interconnected. Hope that helps! If had a more specific question, please let me know.<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-15672933731757846002018-03-01T07:54:43.010-05:002018-03-01T07:54:43.010-05:00Is it possible to let me know if your son has any ...Is it possible to let me know if your son has any endocrine abnormalities? For example Thyroid hormones, testosterone and growth hormone?Dawnnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-89932855320649887012018-01-20T13:19:13.574-05:002018-01-20T13:19:13.574-05:00So glad you found this post helpful! The vision pr...So glad you found this post helpful! The vision problems are due to Lyme disease - a very common symptom. Kepp treating your Lyme and co-infections, and hopefully, the problems will reverse.<br /><br />Methylation is SO important for anyone undergoing treatment for tick infections - we went through that with my son - his methylation was so poor that he could barely tolerate any treatments - he didn't start improving until we addressed methylation - it's a huge part of the detox process, which is necessary in order to progress with tick infections.<br /><br />Have you seen my post on candida? Another integral part of treating tick infections, unfortunately. This post links to several that you might find helpful in getting that yeast under control:<br /><br />http://livewithcfs.blogspot.com/2017/11/throwback-thursday-treating-yeast.html<br /><br />And here is another post on Herx reactions that you might find helpful:<br /><br />http://livewithcfs.blogspot.com/2017/11/throwback-thursday-treating-herx.html<br /><br />Good luck! These are complex illnesses to deal with - let me know how it goes.<br /><br />Sue<br /><br />Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-62210035491149175382018-01-20T11:49:54.320-05:002018-01-20T11:49:54.320-05:00Wow! This all makes total sense! I took the ME/CFS...Wow! This all makes total sense! I took the ME/CFS test on another site and it's me!! I am going to see my Lyme doc on the 30th, he's a DO, and am going to bring this up to him. I have Lyme and at least 2 confections, Candida, CFS, adrenal fatigue syndrome.....I wonder, do you also suffer from your eyes not focusing for hours after reading? Thank you so very much for doing all this!!Loisnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-90029770142384968142017-11-28T11:34:29.719-05:002017-11-28T11:34:29.719-05:00Sorry for the delay in responding - I was away for...Sorry for the delay in responding - I was away for the holiday week.<br /><br />Yes, yes, yes! Your crash is due to the anesthetic used in surgery. All anesthesias dilate the blood vessels, worsening Orthostatic Intolerance, an integral part of ME/CFS...and NO is the worst culprit among them! The best approach with surgery (in case you go through it again someday) is to talk to the surgeon and anesthesiologist ahead of time, request the least vaso-dilating anesthetics (though they all are to some extent), and - most importantly - request 2-12 hours of IV fluids after your surgery to get your blood volume up.<br /><br />Unfortunately, this is a problem best prevented - there's not a lot you can do after the fact except lots of rest and LOTS of salt and fluids, again to try to get your blood volume up to ease the OI symptoms. Compression garments may help, too.<br /><br />My son had 4 knee surgeries. With the first 2, he crashed for a full month after, even though his ME/CFS was usually mild. With the last 2, he got 12 hours of IV fluids after surgery and was feeling great (other than knee pain) within a couple of days - huge difference.<br /><br />Here's more info on OI- there are many, many ways to treat it and treating OI usually dramatically improves ALL symptoms. This will not only help you recover from your surgery but will help to improve your overall quality of life & ability to function without crashing so easily:<br /><br />http://livewithcfs.blogspot.com/2017/10/throwback-thursday-orthostatic.html<br /><br />Good luck!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-27172276367701262302017-11-23T14:25:32.422-05:002017-11-23T14:25:32.422-05:00Hi Sue
I am new to your blog and have been reading...Hi Sue<br />I am new to your blog and have been reading through it feverishly - so informative! I’ve had CFS for 5 years.<br />I am currently in a severe crash post abdominal surgery. My OI has never been this bad, I can’t tolerate anything other than being flat on my back.<br />After reading this, I am wondering if Nitrous Oxide maybe the big culprit here. If yes, what can I do to ease the symptoms?<br /><br />Thank you for sharing your journey with all of us. It certainly makes me feel less isolated.NQhttps://www.blogger.com/profile/17018784290819025845noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-44634984425996110292015-12-02T10:10:08.379-05:002015-12-02T10:10:08.379-05:00Thanks for sharing your story, Debbie. Sorry you h...Thanks for sharing your story, Debbie. Sorry you have been through so much! Definitely try treating methylation.<br /><br />Candida/yeast overgrowth alone can make you feel TERRIBLE! That alone could easily lead to a misdiagnosis of CFS - for me, it causes flu-like aches and complete exhaustion. I, too, struggle with chronic yeast overgrowth, and I feel so much better when it is under control. I highly recommend you focus heavily on that first. Here is some of what has helped my son and I....but when it's bad (as it has been lately, after antibiotics this fall for bronchitis), strong antifungal medications are a MUST. I have been on 200 mg of Diflucan a day for 6 months now, and I feel so much better. A strict diet is also critical:<br /><br />http://livewithcfs.blogspot.com/2014/12/treating-yeast-overgrowthcandida.html<br /><br />Good luck!<br />Sue<br /><br />Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-18287612132270231222015-11-26T22:48:32.032-05:002015-11-26T22:48:32.032-05:00This is very interesting info.. I've been unwe...This is very interesting info.. I've been unwell since the middle of the year after taking metranidazole antibiotic .. Gave me heart palpitations and terrible acid reflux. Earlier blood tests showed low ferritin and low b12 (ignored by my dr) I went to a natruopath and used b12 spray and got my levels back up as well as a diet to increase stomach acid. I'm taking a lot of supplements but have been suffering terrible fatigue and brain fog. Now reading it sounds a bit like it could be a methylation problem! Also battling candida in my digestive tract.<br />Dr now wants to diagnose CFS as its dragged on for months. I just wanna feel better!!!Anonymoushttps://www.blogger.com/profile/17799110415213947061noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-66301692713507033262014-04-16T12:47:19.135-04:002014-04-16T12:47:19.135-04:00Hi, Amy -
Nice to "meet" you - it'...Hi, Amy - <br /><br />Nice to "meet" you - it's always amazing to me how many people are struggling with similar medical issues behind the scenes - we are all over!<br /><br />Glad to hear you are already being treated for methylations problems - it's so critical with the tick infections. Sounds like you are in the same boat as my son. I did have Lyme for a few years but now am back to "just" CFS (an immune disorder).<br /><br />Glad you found the post helpful - I will try to come by your blog and visit!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-69021414906801823212014-04-15T18:34:30.455-04:002014-04-15T18:34:30.455-04:00Hi Sue:
Thanks for sharing this VERY informative p...Hi Sue:<br />Thanks for sharing this VERY informative post. I am currently being treated for a dysfunctional methylation process along with Lyme, Babesiosis, Bartonella, EBV, and multiple autoimmune diseases. No fun. I am sorry to hear that you guys have been dealing with this as well. I can't imagine how hard this would be to be a college student and to be dealing with all of this. My thoughts are with you guys. Thanks for sharing this post on Small Victories Sunday!Anonymoushttps://www.blogger.com/profile/08278185832310687923noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-72438608186621078842014-04-13T03:14:29.477-04:002014-04-13T03:14:29.477-04:00Thanks Sue, this is really interesting. I will hav...Thanks Sue, this is really interesting. I will have to look into this :) Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-14283104117143942882014-04-11T20:38:54.297-04:002014-04-11T20:38:54.297-04:00Thank you, Nina - I will definitely watch this. Ni...Thank you, Nina - I will definitely watch this. Nitrous oxide is a big no-no for people with ME/CFS (and FM and many with Lyme) for another reason, too - it is a very strong vaso-dilator which makes OI get much worse, thereby causing a severe post-op crash. We made sure to avoid it for both of our sons' surgeries. I hadn't heard about its other negative effects before - so glad we talked to our surgeons and anesthiologists before each surgery!<br /><br />Thanks - <br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-22547946783595412302014-04-11T18:07:05.607-04:002014-04-11T18:07:05.607-04:00Thank you, dear Sue.
Maybe this video will be us...Thank you, dear Sue. <br />Maybe this video will be useful to you.<br /><br />http://www.youtube.com/watch?v=BvEizypoyO0&desktop_uri=%2Fwatch%3Fv%3DBvEizypoyO0&app=desktop<br /> <br />I found it when I was searching for some explanation for my severe neurological decline after my knee replacement surgery. I discovered that the Nitrous oxide, (commonly used for anaesthesia) irreversibly oxidizes the cobalt atom of vitamin B12 and thereby suppresses the activity of B12-dependent enzymes such as methionine and thymidylate synthetases. Animal and human studies have demonstrated that the haematological, immune, neurological and reproductive systems are each affected.<br /><br />Cyanocobalamine injections were the “must «for me: 3 weeks every day and then twice a week. I’m better now.<br /><br />I'm French-Canadian Lymie.Anonymoushttps://www.blogger.com/profile/06352035109023154950noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-21052740088619327242014-04-11T16:31:21.235-04:002014-04-11T16:31:21.235-04:00I'll give you a sneak preview, Shelli ;) The e...I'll give you a sneak preview, Shelli ;) The experts now say sublingual is absorbed as well as injections, though the type is important - that gets complicated, so I will try to explain it in the post.Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-68459062054669770322014-04-11T16:30:08.321-04:002014-04-11T16:30:08.321-04:00Great suggestion, Karen I will include the link a...Great suggestion, Karen I will include the link also in the B12 post. I wish we had known about this back when Jamie was so sick and couldn't tolerate much!Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-86477725796969010922014-04-11T13:05:34.884-04:002014-04-11T13:05:34.884-04:00Thank you so much for another excellent, informati...Thank you so much for another excellent, informative post! I have excellent supplements for mitochondrial support and multivitamin, but I'm wondering what to do for B12. I'm looking forward to your B12 blog post, because I'm curious to know if you *have* to have injections, or if you can find a good supplement that would help.Shellihttps://www.blogger.com/profile/03068094486297918345noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-69419608474281164242014-04-11T11:10:32.876-04:002014-04-11T11:10:32.876-04:00people, who have sensitive stomachs might want to ...people, who have sensitive stomachs might want to try the following, http://www.neurobiologix.com/Neuro-Immune-Stabilizer-B12-B6-Vitamin-D-Cream-p/46.htm. It's a cream that has worked for me, I couldn't tolerate the 5MTHF, Awesome post, Sue, way to explain methylation!Karenhttps://www.blogger.com/profile/06497816687908467582noreply@blogger.com