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#1
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Fasting to Promote Hematopoietic-Stem-Cell-Based Regenera
Hello. I got a copy of the paper from Cell. http://www.cell.com/cell-stem-cell/a...909(14)00151-9 Then two others on this same topic. Also, I have located 4 FDA Clinical Studies, but I found no useful results have been uploaded in any of these trials to the trial listing at clinicaltrials.gov.
I want to see what CBC changes happen during a fast and time to recovery post fast without the complications of chemotherapy. All these trials involve chemo causing immunosuppression. I want to have information that can help me confirm or change my personal protocol, which I outline below. As fasting should suppress white blood cell production, caution may be required during and maybe after fasting. Is anyone else interested in trying this? If so we should talk. My individual case proves nothing. Why can't we crowdsource an informal clinical trial? There is, it seems, plenty of evidence fasting for more than 48 hours can work, but thus far, the data is about mice, not humans. However, it would be good to get more human. I have tried calling/emailing other researchers. I twice called then sent email to Dr. Longo, but he has not returned my calls - yet. I have been told by others that the information I seek is in his hands, but considered proprietary. I am on cycle 2 of 72 to 96 hours water/black coffee only each three weeks. I got a CBC before starting, while not otherwise infected or ill so as to have a baseline. I plan the next CBC aftert cycle 4, then cycle 8. According to the recent blood test, my ANC is about 2.5% of normal, a record low in my case. If the endpoint counts of my suppressed cell type are at "critical" or above, I will consider this an effective therapy and would be glad to share here. My longest fast thus far is 83 hours. Day 3 seems easier than day 1 & 2. However, my protocol is based upon a clinical trial list, and reading the papers. According to what i read, Kcal<200/day, and a researcher told me that was an FDA requirement. Anyway, I am not on chemotherapy. So I am just making this up until someone with knowledge can help to form a better protocol. I came to this forum looking for more knowledge. Those involved in the current and past clinical studies are unable to release any meaningful data. Maybe you know someone who can, and maybe you would like to try this and share results. If you are interested, be sure to include measurements. BTW, I was given a diagnosis: MDS RAEB-1. I am netropenic. I spray myself with chlorhexidine solution upon occasion and use antibiotics, with an extended run to assure no resistant bugs survive, only when I feel it is absolutely needed. I won't give you my long lecture about the meaning of diagnosis unless asked. Thank you for your attention. |
#2
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Hello akemwave,
I will be interested in how you progress with your protocol. It's unfortunate that you cannot connect with Dr. Longo to assist you in your trial. Maybe there is someone local that would be willing to assist you. Many times, researchers will respond to other doctors/researcher before the general public so if you have a doctor willing to be your advocate, that may prove helpful in fine tuning a protocol. Undergoing extreme fasting without support is bit scary to me. From what I remember, Dr. Longo provides his clinical trial patients with a fasting kit with some level of calories/nutrition on the fast days. Coffee/water only was too difficult for most and they found they could provide a bit more calories and still be effective. If you watched the video I posted in the other link, he speaks to that in there. Hopefully you are including blood chemistry panels in addition to your CBCs and have also verified that your B12, folate, copper, iron, zinc and vitamin D are optimal since these are the major nutrients needed for blood production and immune system support. Wishing you success with in your journey. Please do keep us posted of your progress.
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K. |
#3
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Response to Marlene.
Thank you so much Marlene. I will follow up on your first suggestion, to enlist the aid of a doctor. That is a fine thought.
My first 3 day water only fast ended with some cramps. I studied electrolyte balance, a balance more upset by my drinking plenty of water and coffee, and bought some potassium pills at a health food shop. This 2nd round I felt pretty good at break the fast time. Unlike many people my age I have few of what the professional medical folks call co-morbidities. I do have an intermittent heart block, and I read that heart arrhythmia should be on the watch list, which it was. As my ANC is very low, and I understand fasting will suppress stem cell blood production (in ways I do not very well understand) I was on the lookout for infection. I stocked up on amoxicillin just so I could better avoid an emergency room event. I had the feeling that I almost wrote my own prescription. Just call me Dr. Wave. Ha. I did not needuse the antibiotic. A zero calorie diet is pretty much what is called for if you want to really roto-rooter the damaged HTCs. That is what I take away from reading the research papers. The one researcher I did speak with said the FDA made them set a minimum calorie input. And I can understand that. People with solid tumours on chemo have a very different situation from mine. Dr. Longo's has contributed for a new company which hopes to sell a product that is supposed to give the effect of a water only fast, at least in terms of killing off damaged HSCs, while allowing people to eat a special diet. The company is L-Nutra. I want to get well, soon, and am willing to suffer a bit to have a better chance to not go through later stages of MDS. Of course, we do not know if fasting will help ME. In humans, or in my case, fasting could make hasten bone marrow failure. Mouse research is all I think we have to go by. At least so far. And we have different genetic/genetic mutation/expression/damage and inheritance what happens for me may not happen for others. Compared to dangers of standard therapy, I will bet on fasting. For now. You suggest blood chemistry tests. I did have one some months ago. I will review it in light of your wise comments. My neutropenic MDS journey started many years and a lot of tests ago. Although good food is better, I am regularly taking supplements for trace minerals, and so forth. I did not mix salt into my water last fast. Maybe I should have. |
#4
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Update on Fasting -Feeling Good
Here is the clinical trial with 4 schedules. https://clinicaltrials.gov/ct2/show/...1+fast&rank=10 I used the one under the heading Experimental: Group III as a model. Note that black coffee is allowed.
My 2nd fast was easier than the first. Cycle 3 starts Friday. Following the end of the last fast I got three infections which self resolved. Two being skin abscess and a third a fever. I believe fasting suppresses the immune system, so I was on the lookout, as higher risk of infection should be expected. I bought a one month run of Amoxicillin Clav just in case. All infections resolved without medication, the fever in one night. I hate taking Augmentin... ugh. I was so delighted to avoid it. It has been a long while for me since fever resolved on its own. So although all this proves nothing, I now feel very hopeful. Series of blood tests might tell us more, but I planned to wait so I will. ******** Sorry... Correction on date the next fast date. According to my log, and proper calculation, the next fast should start 22nd by missing dinner so start time ~ 6 PM and thence for 83 hours means to 6 or so in the AM on the 26th. Last edited by akemwave : Wed Jan 14, 2015 at 02:35 AM. |
#5
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Thanks for the link to the trials. Too bad they take so long before they can publish anything. But I think there's a lot that's been shared already based on previous observations.
Interesting about the fever and infection. Sometimes, when a fever/infection presents itself in this way it may just be part of the healing process. When the immune system is weak, bacteria and viruses can linger in the body without symptoms because the immune system is unable to deal with it. But as the immune system improves, you may find small infections starting to clear. Fevers are part of the healing process. The difficulty is determining if it's just part of the healing process or if it's a new issue. But it sounds like you dealt with it just fine. Wishing you great success with this and thank you for sharing your experience.
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K. |
#6
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Yes - really fascinating, Akemwave. I'll be very interested to see what your blood results show after Cycle 3.
__________________
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood. |
#7
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Post Cycle 3 Interim Results
The "baseline" neutrophil count was 2% (.060). The recent interim report shows 10.3% (.230)
I waited to take the sample after feeding myself ( regaining weight and marrow function) then get over a bronchial infection, then a minor finger infection. Now starting cycle 4. Although very promising, I never trust single readings, and no one is around to finance more frequent sampling. Lets see what happens after cycle 6. Then I may post more complete information. I will consider this therapy a success if my readings reach as high as "critical", which is .500. Last edited by akemwave : Fri Mar 6, 2015 at 12:46 PM. |
#8
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Thanks for the update. I know how you feel about trusting just one reading. But still, it's promising to see it increase.
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K. |
#9
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Looking for Doctor
Marlene. I have been thinking about how important (your idea) it is to have a doctors advice. From where I am it is a major effort to visit a hematologist. There is one Center of Excellence doctor in Cape Town, and although I have seen him once in person, he did not respond to my email about the fasting paper. It would be nice to connect with someone who could give me rather informal advice, preferrably via email or other electronic means. My experience is that very few doctors are willing to engage without an in person appointment.
If you have any ideas about how to connect with such a doctor, please do let me know. I spent part of last night entering recent CBC results into my spreadsheet. It was a reminder of what for me has been a very long path, and how helpful it might be to have a 2nd opinion to my own. |
#10
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I'm not sure I can offer any concrete suggestions. It takes time to establish a good relationship with a doctor. Depending on the doctor or their hospital's policies, many don't utilize email with their patients. John has two hematologist. One is local who managed his aftercare once we returned home from Johns Hopkins. He does not use email and appointments are needed for most consults. This is a private practice and pretty much runs on a traditional medical model.
His doctor at Johns Hopkin is always open to email communications. Both before and after John's treatment there. But they are a teaching/research hospital and utilize a different model. I think you have to start with face to face appointments unless you find a doctor who will do phone consults. Depending on what you want confirmed, you may not need a hematologist from a Center of Excellence. So first think through what you really want from the doctor. Is it to help you stay healthy while fasting and to keep an eye on your CBC? Or is it to help you monitor more complex aspects of the MDS? Do you have a local hematologist/doctor that you are seeing regularly? And will they work with you on this. Define your expectations or goals first so you can then figure out what level of support you need. You may have to consider working with an Integrative or Complementary or Holistic doctor. Or try to find a a doctor who does Therapeutic Fasting in their practice. These doctors are more likely to work with you via phone consults/email. But they still may require a face to face visit at first. It is not easy finding someone who can or is willing to work with you on your terms. Most want to force fit you into their model. The key is finding someone willing to be flexible and open minded. Sometimes your local family doctor can work with you and have consults with the doc from the Center of Excellence. Many times doctors are more open to speaking with other doctors in these cases. Sorry I don't have anything better to suggest. If I think of anything, I'll be sure to post.
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K. |
#11
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Article
Just wanted to add another article on the benefits of fasting and chemotherapy. http://www.sciencedaily.com/releases...0330141927.htm
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K. |
#12
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How Nice if True
I see Valter Longo is again involved. It is not science until these studies are replicated, but I thank you for this. There is at least one related paper found on pub med. Much of it is beyond my scope of knowledge, but it is interesting, and Valter Longo is not involved.
http://www.ncbi.nlm.nih.gov/pubmed/24732809 Quote:
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#13
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akemwave,
Hope you are doing well. Are you still fasting? Any observations that you care to share?
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K. |
#14
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Quote:
I would like to post a life backgrounder. I don't have time now. The main thing is I have not have a significant abcess for months. Those were ugly, scary. No fevers. Pre fasting I had a couple of those as well. I have a tendency to get bronchitis. None of that problem. So, I feel pretty hopeful, very good about it, but don't want to be too enthusiastic just yet. In the last few days I have taken time reading posted comments in this forum. I find many to be very informative and from people who take the time to know what they are writing about. It is very interesting. Mostly I am horrified by a BMT story. I really had hoped that fasting would keep me from needing BMT. It was and remains a motivation to be very hungry. So, I still am hopeful. Very hopeful. One thought. My personal story, even if very good, is just that. If we could get a proper organization involved, maybe we could get a grant to research short term starvation as bone marrow failure therapy. To qualify, we would need to have an institution involved, and some qualified medical experts. Any takers? Ideas? Are other people interested in being subjects of such a study? |
#15
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Well, I'm kind of "starving" in that I haven't eaten or had liquid nourishment for over two weeks and it hasn't helped my counts at all. In fact they continue to drop. The neuts are dropping slower than my HB but they are definitely on the decline. I'm now down to 44kgs. My platelets are the only cell line to have increased.
I have been fasting on average two to three days a week before my current "starvation" episode (due to feeding tube failure and requiring a procedure to place a new one). As for infections...have had two bouts of pseudomonas and one chest infection in the last four months. |
#16
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No! Eat.
My theory is that short term starvation reduces bone marrow blood production. The idea is that the "least hardy" blood producing cells are the first to die, that is on day 2. Then, a day later, day 4, you rebuild by eating. In other words neutrophil production loss during short term starvation would be expected.
Then to give adequate time to rebuild, you eat as much as you can until the next fast which, at least in the clinical study I referenced, was a month later. I must use the ipad, and I must remember what you said. But it sounds horrible. If you can regain the ability to eat, get a lot, and go for physical therapy. For me? I check my weight and look to try to keep it from going down. I am no doctor. But last fast I was thinking this was sort of like chemo. I got a minor infection that blossomed the day after the fast ended. I crossed my fingers. It took three weeks to clear. No antibiotics. Nice. But I keep a stack of Amoxicillin around just in case. Due to cost, I do not keep G-CSF in the fridge, and that is fine now that I know I don't have to eat amoxicillin for a month if I take one. I am beginning to think doctors over prescribe just to be safe. Anyway.... I don't understand your overall health problems. But no nutrition for more than 3 days sounds injurious. I Googled that topic, starvation, while trying to get data on bone marrow production while starving. Nothing much out there. Last edited by akemwave : Tue May 5, 2015 at 10:36 AM. |
#17
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Yes, I thought that after my feeding tube was replaced and I could have my overnight feeds again that my counts would rebound a little but they haven't. Maybe I was fasting (involuntarily) for too long to see a rebound effect. I'm hoping my weight starts to increase now that I'm back on my nutrition regime.
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#18
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I hope so too, Chirley. We're not hearing much from you at present. I hope that doesn't mean that you are still really miserable.
__________________
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood. |
#19
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Eat, Drink, and be Merry
My weight was ~67 kg. After last fast, it was about 64,5. And when I first started to notice it, even lower. So I have been gobbling. I wonder if I can hit 68 before next fast.
I found new stuff. If you are interested, goto [nasty BASIC instruction... help i'm caught in a loop] youtube and enter the name Valter Longo as your search term. There is even a Tedx in Italian. His 1st language. |
#20
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Akemwave,
I hope once Valter Longo publishes, it will be easier to find a healthcare provider willing to assist. Since my husband is 13 years out from treatment and in a remission, he's really not a good candidate for a trial unless he relapses. It's been 15 months since we started the 5/2 intermittent fasting diet but have not had any blood work done since last September. We do know that his kidney function is improved as well as his blood glucose levels. I also think there are two different groups involved with Bone Marrow Failure. Those with MDS and SAA. With SAA, it's generally accepted that most is caused by an autoimmune problem. Some are trying a fasting protocol for various autoimmune disorders but I don't know of anyone utilizing it for SAA. I haven't seen any real concrete outcomes for any autoimmune diseases at this point. But then I haven't looked either. The cause of autoimmune disorders is unclear and varies for each person. I think fasting needs to be accompanied by proper nutritional support, reducing ones toxic burden and correcting imbalances in the digestive system. I hope you continue to improve or at least, maintain.
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K. |
#21
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Marlene;
In accord with the fasting studies, the effect, to cause apoptosis of haemopoietic cells does not happen until you have been consuming zero calories, zero energy, burned through your glycogen reserves, for 48 hours. In other words, defective blood making stem cells commit suicide after two days. I looked up the 5:2 diet, and it does not qualify in two ways. It provides some food on day one and two. And there is no day three. According to this theory, any food consumed on day one and two retards the time bad guys start give up and die. Unfortunately, I presume, the timing will vary according to the individual, and your energy reserves. As I have not exercised enough, and have been building as much body weight as possible, I presume it will now take a bit more fasting than when I started. So I have tried to add some time to 72 hours called for. I seem to be hitting 82 hours. Not eating is tough. I think of chemo and BMT and then not eating is easier. If it works. I sure hope it does. For me. This weekend if I have no significant sign of infection, I fast again. Cycle 6. Quote:
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#22
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Status Post Fast 6
Marlene;
I have ended cycle 6, and when ready will go for a blood panel. You said, " From what I remember, Dr. Longo provides his clinical trial patients with a fasting kit with some level of calories/nutrition on the fast days. ... Hopefully you are including blood chemistry panels in addition to your CBCs and have also verified that your B12, folate, copper, iron, zinc and vitamin D are optimal since these are the major nutrients needed for blood production and immune system support." Looking again on the mouse study I note, "in fact, we show that PF alone causes a 28% decrease WBC number, which is fully reversed after refeeding (Figures 7B and S2F)." Normally 28% should not be so much. But without monitoring tools, it is all pure guess work. As a matter of time and money, I could not do that, and that is too bad for me, and for research as well, as information I may have produced is lacking. My story? The last fast was fun, easy and empowering. 86 hours. It was probably too long. I felt I could wait until lunch time, no problem. Then - A day and 1/2 after break-fast I got the runs. 48 hours after that, a mouth "sore" at one side of the base of the tongue. Unfortunately that inhibited eating. Antibiotics have been applied. Local Doc says he has seen that often in immunocompromised individuals. I noticed in the mouse studies WBC was suppressed 28% at the end of 3 days fasting. I just did not know how to calibrate that to humans, or at least this one human. As I said, the sore made it painful to eat, but not eating post fast is very very bad. I now have overcome that problem with appropriate good liquid foods, and feel much better. When the infection is cleared, I will get a blood panel, and report my personal result. Lets hope it shows significant improvement. |
#23
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I was reading my most recent issue and got to the article "Cells on Fire". An excerpt is available here, although not the portion that is pertinent to this discussion.
http://www.scientificamerican.com/ar...ation-factory/ Inside the Inflammation Factory A newly discovered structure in cells underlies inflammation wherever it occurs—an insight that may lead to new treatments for ailments as diverse as atherosclerosis, Alzheimer's and fatty liver disease. To read the entire article you'd need to buy the issue or visit your library, but here is the part that I'd found interesting in reference to this thread: "FOOD SHOCK The true stunner of the field, in my opinion, however, was the discovery that eating can trigger an inflammatory response. More specifically, eating too much in one sitting will trigger an acute episode of inflammation that eventually resolves itself, and routinely eating so many calories that the body has to store them as fat triggers chronic inflammation. Biologists had little reason to suspect such a relation. After all, nutrients are not bacteria-specific molecules or particles, not are they sequestered inside cells (which would make them obvious candidates for danger signals). And yet several studies conducted in the past few years in animals have determined that certain nutrients, such as saturated fatty acids (found in meat and cheese and also manufactured by our body), can in high amounts act as danger signals and directly activate the NLRP3 inflammasome in macrophages and other cells." ... "Given that overnutrition can cause inflammation, my colleagues and I at Yale University decided to pursue the reverse question: whether undernutrition results in metabolites that can reduce inflammasome activation. The anti-inflammatory effects of fasting and exercise are well known, so we examined two molecules that are increased during the body during these states: beta-hydroxybutyrate and lactic acid. We found that the molecules interact with particular, distinct receptors on macrophages; together these interactions initiate a series of biochemical reactions in the cells that ultimately turn off the genes involved in triggering inflammasome production. Our next challenge is to figure how to harness these moderating pathways to deactivate inflammation in various diseases." There's a lot of good stuff in the article beyond these two paragraphs, but there's no doubt that the author thinks that fasting reduces inflammation. So if it is inflammation causing your low blood numbers it could help. P.S. Sorry for any typos, I was typing from my paper version. |
#24
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Sciam article
Hi Curlygirl. Yah. I broke that too long fast with too much food. Yikes. I am an online Scientific American subscriber, so thanks to you I will read it. Right after the end of the mouth sore episode, I got the flu. Nasty nasty sneeze, sneeze again then kachoo, then painful to swallow - but local village doc says this is going around, and no systemic antibiotics are called for. So, have to wait a while longer before I can get my blood tested is see if I really have turned into BONE MARROW MAN. Wow. Maybe! This flu did not (yet) turn into, caugh, bronchitis, which it always used to, and today it is getting better. Yum. Hope hope.
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#25
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Current article
Looks like Prof Longo is getting ready to release a book on fasting hopefully this fall. I don't know if the study on cell.com is a new or if it's just been revised.
http://www.nzherald.co.nz/lifestyle/...ectid=11469083 http://www.cell.com/cell-metabolism/...131(15)00224-7 http://www.l-nutra.com/index.php/products/prolon
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K. Last edited by Marlene : Mon Jun 22, 2015 at 02:42 PM. Reason: add a link |
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