tag:blogger.com,1999:blog-22576999.post2750773027461328191..comments2024-03-28T17:38:39.157-04:00Comments on Live With ME/CFS: Increasing Glutathione in ME/CFS & Related IllnessesSue Jacksonhttp://www.blogger.com/profile/14532098225905355332noreply@blogger.comBlogger22125tag:blogger.com,1999:blog-22576999.post-60152244545868030012019-12-05T19:04:57.560-05:002019-12-05T19:04:57.560-05:00Glad to help!Glad to help!Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-48281777993149734492019-12-05T18:44:14.115-05:002019-12-05T18:44:14.115-05:00Ok great, thank you so much Sue!
All the best for...Ok great, thank you so much Sue!<br /><br />All the best for you and the family.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-11456832973411152942019-12-04T10:22:07.078-05:002019-12-04T10:22:07.078-05:00This turned out to be a difficult question! I didn...This turned out to be a difficult question! I didn't write down the concentration and dosing of the injectible liquid anywhere, and it's been a couple of years now since we used it, so forget my memory! ha ha I searched through old Rx receipts and found some, though. The liquid was 200 mg/ml. We injected 1 ml at a time, and I seem to recall doing it every 2-3 days?<br /><br />Good luck! Hope it helps you as much as it helped us!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-7461688897073304192019-12-03T20:21:04.643-05:002019-12-03T20:21:04.643-05:00Hi, I was wondering what dosage and timing your gl...Hi, I was wondering what dosage and timing your glutathione injections were prescribed at?<br /><br />I understand you prefer the nasal spray version, but it would still be great to know!<br /><br />Something like, e.g. 200 mg (1 mL of a 200 mg/mL solution) injected once a week - or whatever it was.<br /><br />Thanks in advance!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-16441266842871691992019-02-10T09:13:06.270-05:002019-02-10T09:13:06.270-05:00So sorry to hear you have suffered so much and for...So sorry to hear you have suffered so much and for so long. <br /><br />This entire article above is all about a wide variety of different ways to increase glutathione in your body, and most of the options listed don't require a doctor. So, try some of those.<br /><br />However, glutathione is not a cure. It alone will not take you from totally debilitated to well. Unfortunately, there are no miracle cures for ME/CFS (YET!), but you can experience significant improvements (like we have) with a variety of treatments that each help a little. Glutathione is a good start but there is a lot more you can try. <br /><br />Here is a summary of the treatments that have worked best for my sons and I over the years - we now function fairly well and live active lives again: http://livewithcfs.blogspot.com/p/mecfs-treatments.html<br /><br />Good luck!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-19957996385434521872019-02-09T19:13:13.644-05:002019-02-09T19:13:13.644-05:00Please dear God anybody help after being severely ...Please dear God anybody help after being severely ill for 38 years please someone tell me if there's another way of getting glutathione into my body to specially heal my gut and other things that's not the nasal spray because I have no doctor to prescribe it what is the best 1 that will help me feel better brain problems g u t problems I'm totally debilitated 38 years need a breakAnonymoushttps://www.blogger.com/profile/00663962245642022883noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-90251033749158442752019-02-02T13:06:24.600-05:002019-02-02T13:06:24.600-05:00Wow, that is wonderful! Congratulations! Glad you ...Wow, that is wonderful! Congratulations! Glad you found something that worked for you. We take all of those supplements separately (and many others) but have noticed only mild improvements from them (if any) - with the exception of B12 and glutathione injections. Glad they made such a big improvement for you! Thanks for sharing your experiences - <br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-69962842686941845812019-01-31T07:07:46.103-05:002019-01-31T07:07:46.103-05:00I am pretty new on this protocol. But I have been ...I am pretty new on this protocol. But I have been trying different approaches for years. Feeling really great so far adding milk thistle. Also took 2 bottles of mitochondrial nrg by designs for health which has ribose b vitamins alpha lipoic acid and carnitine coq10 and others. This supplement was the first thing to lift a significant amount of fatigue. Then adding the milk thistle seems to lift another layer. A lot of the antioxidants in it help to spare glutathione. There can be many causes to chronic fatigue. I'm happy to finally find what works so I can have a life again. I never post of these things, but this seemed important. Anonymoushttps://www.blogger.com/profile/04081452352779697228noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-1005428423849191212018-06-07T00:26:55.661-04:002018-06-07T00:26:55.661-04:00The nearest ME specialist to those in Virginia and...The nearest ME specialist to those in Virginia and East Tennessee is Paul Cheney, M.D., Ph.D., in Hickory, NC (east of Asheville). <br /><br />In 2015, after over 30 years of clinical specialization in ME/CFS, Dr. Cheney was forced by a sudden, rare, and severe illness to close his physical practice (though he remained available to his patients by email and phone consult). Perhaps because of this, some online sources state that Dr. Cheney is retired. Thankfully, this is not so. <br /><br />In late 2016, Dr. Cheney resumed a less demanding practice under the name Cheney Institute. He currently sees moderately-to-severely ill ME patients on a limited basis. (My adult child and I, Cheney patients for over a decade, have upcoming appointments. So he remains in practice as of July, 2018.)<br /><br />Dr. Cheney is not every patient's cup of tea. Unless one expressly requests a shorter time, appointments run 2 to 3 hours -- not as long as the pre-2015, 8-hour marathons, but truly challenging, as - following a thorough examination - he presents information from his and other specialists' current research and treatment options in a way that assumes his patients' intelligence and stamina are equal to his. This is refreshing in an M.D., but exhausting for a PWME... <br /><br />Be warned, Dr. Cheney's fees are a shock: now edging towards $1k per hour. (One can successfully file for some private insurance reimbursement, but he does not accept Medicare). This is off-putting to many, if not most of us, who would prefer sliding-scale fees so that a more representative cohort of patients might share the benefits of his impressive knowledge and expertise. <br /><br />At our house, we simply look at each visit to Dr. Cheney as our annual vacation, weekly going-out-to-dinner, and birthday, anniversary, and Christmas gifts, and then some, all rolled into a single day in western North Carolina. (It's not that hard, since we are too sick to dine out, vacate, or celebrate...)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-73134512442852951032018-04-10T19:35:16.788-04:002018-04-10T19:35:16.788-04:00Hi, Tracy -
Thanks for taking the time to leave ...Hi, Tracy - <br /><br />Thanks for taking the time to leave a comment and sharing your experience - so glad to hear you found something that has helped you so much! Which glutathione precurser do you take?<br /><br />I am almost finished with my injectible solution, so I can switch to the new nasal spray now! Yay!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-6982167836074609442018-04-10T01:47:14.545-04:002018-04-10T01:47:14.545-04:00Hi Sue,
I found your article on increasing glutat...Hi Sue, <br />I found your article on increasing glutathione very intriguing. Glutathione is the most important molecule that almost nobody has heard of. I have been taking a supplement for the last 7 years that helps my body increase it’s own production and have had amazing results. I am so thankful I don’t have to give myself injections! <br />TracyAnonymoushttps://www.blogger.com/profile/10629744391415375122noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-90670309374539099232018-04-02T17:01:00.571-04:002018-04-02T17:01:00.571-04:00Suzanne - Sorry for the delay - the holiday weeken...Suzanne - Sorry for the delay - the holiday weekend kept me busy!<br /><br />The glutathione nasal spray is 100 mg/ml, and the dosage is one spray each day in one nostril. Send that Rx to Skip's and no problem - they are the top supplier so far.<br /><br />The closest ME/CFS specialist to you is Dr. Nancy Klimas in northern FL. She has a full clinic there (and another in south FL, too) and also does research. She is one of the top ME/CFS experts in the world and knows about ALL of the best treatments. Good luck!Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-88921092576661834102018-03-31T16:09:31.849-04:002018-03-31T16:09:31.849-04:00I plan to ask my physician about prescribing this ...I plan to ask my physician about prescribing this spray. What do I need to know about dosage? Wouldn't he have to specify that ? Also what is the nearest ME specialist to East Tennessee? SuzanneAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-80627745999024781132018-02-16T19:24:44.585-05:002018-02-16T19:24:44.585-05:00My son is thrilled to give up the IM injections! G...My son is thrilled to give up the IM injections! Good luck & let me know how it goes - hope it helps!Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-64668362760939130402018-02-14T17:39:38.514-05:002018-02-14T17:39:38.514-05:00Thank you so much for this info! I'm so happy ...Thank you so much for this info! I'm so happy I don't have to do the injections. Thank you so much for help. I really appreciate it 😊Juliehttps://www.blogger.com/profile/08079378982814816066noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-64648617656034209932018-02-14T16:08:36.732-05:002018-02-14T16:08:36.732-05:00Hi, Julie -
No, you didn't miss anything - t...Hi, Julie - <br /><br />No, you didn't miss anything - there really are not any official protocols for this or most other ME/CFS treatments! The top doctors just work together to figure out what works - and different things help different patients, so it always takes a lot of trial and error.<br /><br />However, I would skip right over the injections because you are RIGHT - there is now a new nasal spray type of glutathione. Dr. Levine told us it is even MORE effective than injections (and no more giant needles - yay!), so we have already switched my son over to it - just last week. You can order it through Skip's Phramacy, a well-known compounding pharmacy in FL that is also the top supplier for low-dose naltrexone for ME/CFS patients - they know what they are doing! Just ask your doctor for a prescription for glutathione nose spray - it is taken once a day (one squirt in one nostril each day). My son says it's great so far! I am using up the rest of the injectible we have, but then I will switch, too.Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-66529998619575718742018-02-13T10:47:05.117-05:002018-02-13T10:47:05.117-05:00Hi Sue! I'm not sure if I missed it in your po...Hi Sue! I'm not sure if I missed it in your post (brain fog). What is the protocol for injections for Glutathione? What would my doctor write on the prescription? Would you also have the protocol for the IV? Did you get any info on the new form of glutathione delivery now available, the nose spray that is more effective than injections or IV? Would you recommend it?Juliehttps://www.blogger.com/profile/08079378982814816066noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-80705611832823686182017-08-20T19:08:55.703-04:002017-08-20T19:08:55.703-04:00Hi, Johanna -
You are on the right track! Your b...Hi, Johanna - <br /><br />You are on the right track! Your best approach for making real improvements & progress is to go see one of the ME/CFS experts - unfortunately, they are a bit spread out (but we are lucky to have the ones we do!). Closest to you is Dr. Charles Lapp in NC, who was one of the original doctors involved in CFS in the 80's BUT recently, I have heard from patients that although he is knowledgeable and kind, he's not really offering much in the way of real treatments, so if I were you, I would travel a bit further (though I know how hard that is).<br /><br />Next closest to you is Dr. Levine in NYC. That's who we see (about 2 hours away from us here in DE). The good thing about NYC is that you could take Amtrak from Richmond (probably about 6 hrs?). We usually take the train to go see her. It is well worth the trip if you can manage it, and she is used to working with long-distance patients so after that first visit, you'll probably only need to go once a year, and she will work with you via phone & e-mail in between. She is one of the top ME/CFS docs in the world and works closely with the other top docs, so she is up on the very latest research and treatments. <br /><br />You other option is to travel south to Florida to see Dr. Nancy Klimas in her clinic. She has a much larger operation than Dr. Levine (who is on her own in a tiny office!), but they generally offer the same treatments and work closely together.<br /><br />Sorry - no one in VA, but I encourage you to do whatever you can to get to Dr. Levine or Dr. Klimas - I guarantee it will be life-changing for you!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-36669390281241406742017-08-20T16:09:15.456-04:002017-08-20T16:09:15.456-04:00I live in Virginia...where is the closest ME dr? W...I live in Virginia...where is the closest ME dr? Where is Dr Susan Levine?Anonymoushttps://www.blogger.com/profile/05538795198651763143noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-71028016496991195232017-04-07T00:14:27.637-04:002017-04-07T00:14:27.637-04:00Wishing you all the best!Wishing you all the best!Anonymoushttps://www.blogger.com/profile/10782272007586068320noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-75348694054411713522017-03-31T19:07:51.018-04:002017-03-31T19:07:51.018-04:00Thanks for letting me know. I know the Good Doctor...Thanks for letting me know. I know the Good Doctor List is no longer available, unfortunately. If you want to tell me what region you live in (here or you can e-mail me at my profile link up above), I can tell you which ME/CFS expert is closest to you.Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-51653586679711681772017-03-31T17:47:52.804-04:002017-03-31T17:47:52.804-04:00"Check these databases to find a doctor near ..."Check these databases to find a doctor near you" - only one of these links worked.Anonymousnoreply@blogger.com