Recovery post-XMRV

I have a lot to say today and too little energy with which to say it, having just lost ten days of life force to red tape and worry about complying with arbitrary and capricious rules. Between states with differing regulations, plus the DEA which has yet a different set of regulations, I feel like I need a law degree to practice medicine. The system is broken and it is incredibly hard to take care of patients appropriately. When I complained about it recently to a doctor friend in an email, he replied, “My tombstone should read: He died of red tape.” It was always bad, but now nobody even pretends it has anything to do with caring for patients.

My recent month long intensive in Hawaii, treating two young women with ME/CFS and many years of disability, has further convinced me that the therapies I am using are able to tip the balance in favor of a slow climb to wellerness. For the most part, the things I’m doing are not enough alone, but together these therapies are synergistic and additive with continued use. Everything I am doing, and why, is documented and referenced on this blog. The search function in the header works well. The patients are fragile and a lot of tinkering is necessary.

In a nutshell, high dose pulsed oxygen (normobaric and mild hyperbaric) to improve inflammation and mitochondrial function, bioavailable folic acid derivatives for improved methylation (Deplin and folinic acid), sublingual or chewable methyl B-12, Vit D3 replacement, infusions of a modified Meyer’s cocktail including taurine, glutathione by IV push and neurofeedback. Most significantly, I see improvement from weaning inessential drugs, replacing synthetics with bioidenticals, and using herbal treatments instead of pharmaceuticals. In particular, medical Cannabis, if tolerated, for patients who live in a legal state, is a more effective and much safer alternative for chronic pain than opiod drugs, which damage the gut and cause central sensitization over time.

I consider diet to be a cornerstone of treatment. Food as medicine. I advocate a modified SCD diet, allowing whole grain rice, for patients with neuroimmune illnesses that almost always include a GI component in the symptom complex. I encourage SCD yogurt as a probiotic, superfemented to be lactose free and have a high live bacteria count. I also advocate eating organic, and no processed or GMO foods. In particular, avoid the excitotoxins, aspartame and MSG. Here is an important YouTube, by Dr. Terry Wahls, in remission from a wheel chair through dietary intervention alone:

I received some flak for saying that I’m a lumper, not a splitter, with respect to segregating subsets of patients, except for research. From the point of view of clinical medicine, breaking it down into separate cohorts doesn’t help me at all. It is all neuro-immune illness. The therapeutic options are extremely limited. The same things are worth trying in other cohorts also. Many, if not most, of the therapies that are being used in the ASD community are applicable to us. ME is on a continuum with MS and ALS. GWI and chronic Lyme Disease wind up clinically indistinguishable from ME. Fibromyalgia is a subset, not a separate illness. Again, the same treatments are applicable for the same reasons, even if the illnesses look a bit different.

The first thing that happens when there is a response to therapy is improved resilience. A push that would have caused a long crash, doesn’t, but brings minor payback only. At first most everything still feels crappy all the time, though some things have improved. Then some moments that aren’t so crappy creep in. Then some actual good moments. Crappy always comes back though, and when it does, it feels like falling back into the black hole. But it passes much more quickly than before. Improvement needs to be judged in fairly large increments of time, at least 6 months to be sure. One of the young women I treated last month posted this on her FaceBook a few days ago, “I had a good day today; I don’t think I’ve said that in 8 years :)”. That, after only a month of nearly risk free treatment. A long way from a cure, but relief is relief.

Here are some new noteworthy references with respect to oxygen therapy:

I had the pleasure of hearing Dr. Mikovits on Sue Vogan’s radio show, In Short Order, finally able to speak openly in public. The interview is archived here. I thought she was very clear and brave as she answered all the hard questions. XMRV is not a human pathogen. There could be other retroviruses as yet undetected. The mistakes made will inform future research. I personally felt abandoned after the Lipkin paper, subsequent interview by Dr. Lipkin and the press conference, but I am encouraged to hear that he and Dr. Ruscetti are still working on our behalf. They don’t know what the positive serologies mean.  It is tragic that she can’t go back and find out what went wrong so that everyone can learn from it, but much has been learned nevertheless. The only thing she said that I took exception with was that there is no evidence that XMRV has ever infected an animal. Persistent infection has been demonstrated in Macaques after parenteral introduction of virus, exposures similar to what has been happening regularly throughout the history of injected biologicals, dating back to vaccinations with the exudate of cow pox lesions, which certainly contained bovine leukemia viruses, similar to HTLV, and are artificially transferrable to other non-bovine species:

And take a look at this one: Long-Term Infection and Vertical Transmission of a Gammaretrovirus in a Foreign Host Species

So it isn’t XMRV. Other cell lines express other infectious animal retroviruses. Live attenuated vaccines are grown in animal cells that express exogenous retroviruses. Other vaccines contain DNA fragments. Here is the government’s list of vaccine excipients: Vaccine Excipient & Media Summary by vaccine and by excipient. That’s now. The early vaccines were attenuated in live animals. Mouse brains injected into people.

But, say it isn’t an exogenous retrovirus. Why then might antiretrovirals have an effect, in addition to the obvious elephant in the room? The drugs might be preventing transcription of activated HERV’s: Association of human endogenous retroviruses with multiple sclerosis and possible interactions with herpes viruses.

The hypothesis that human endogenous retroviruses (HERVs) play a role in autoimmune diseases is subject to increasing attention. HERVs represent both putative susceptibility genes and putative pathogenic viruses in the immune-mediated neurological disease multiple sclerosis (MS). Gammaretroviral HERV sequences are found in reverse transcriptase-positive virions produced by cultured mononuclear cells from MS patients, and they have been isolated from MS samples of plasma, serum and CSF, and characterised to some extent at the nucleotide, protein/enzyme, virion and immunogenic level. Two types of sequences, HERV-H and HERV-W, have been reported. No known HERV-H or HERV-W copy contains complete ORFs in all prerequisite genes, although several copies have coding potential, and several such sequences are specifically activated in MS, apparently resulting in the production of complete, competent virions. Increased antibody reactivity to specific Gammaretroviral HERV epitopes is found in MS serum and CSF, and cell-mediated immune responses have also been reported. Further, HERV-encoded proteins can have neuropathogenic effects. The activating factor(s) in the process resulting in protein or virion production may be members of the Herpesviridae. Several herpes viruses, such as HSV-1, VZV, EBV and HHV-6, have been associated with MS pathogenesis, and retroviruses and herpes viruses have complex interactions. The current understanding of HERVs, and specifically the investigations of HERV activation and expression in MS are the major subjects of this review, which also proposes to synergise the herpes and HERV findings, and presents several possible pathogenic mechanisms for HERVs in MS.

Or antiretrovirals, reverse transcriptase and integrase inhibitors, might be inhibiting retroposons:

What makes jumping genes jump? Demethylation.

Reverse transcriptase inhibitors presumably inhibit other viruses besides retroviruses if reverses transcription is required in the replicative process. Viread is used to treat chronic hepatitis B, for example. Hepatitis B is a DNA virus that replicates through an RNA intermediate and uses reverse transcription.

Telomerase is a reverse transcriptase. Therefore, arguably RTI’s might cause faster aging, but might tip the balance away from developing cancer. The more you think about it all, the more you realize that, like all drugs, antiretrovirals are blunt swords with many possible mechanisms of effect, all of which says that clinical trials are in order. One would think that the manufacturers would be interested in new indications for their drugs.

My own illness could be explained by a post polio syndrome caused by an attenuated virus, but it doesn’t fit my daughter. Does an enterovirus explain the vertical transmission seen in our families or a response to  antiretrovirals? Does anyone reading know the answer to those questions? Many of us remember the sugar cube that held the first oral polio vaccine. Polio virus can persist: Transmissibility and persistence of oral polio vaccine viruses: implications for the global poliomyelitis eradication initiative.

Protein from helper viruses and recombination events can rescue defective virus. Innumerable chances have occurred: Science Fiction or Fact? 35 years ago, when I was in medical school, autism and MS were rare. Autoimmunity has skyrocketed beyond belief, as has cancer.

Here’s an unsettling paper. Chemical Induction of Endogenous Retrovirus Particles from the Vero Cell Line of African Green Monkeys. Vero cells are present in the DTaP-Hep B-IPV, Poliovirus inactivated and Rotavirus vaccines. AzaC, one of the chemicals used in this paper is a demethylator. Other methods used in the lab to activate ERV’s and amplify retroviruses in tissue culture are radiation and steroid hormones, bringing to mind the myriad ways in which our environment is contaminated, contributing to the cluster fuck for the genetically susceptible and overexposed. Let’s wrap up today with this article which I haven’t finished yet, but it looks to be well researched: What Is Coming Through That Needle? The Problem of Pathogenic Vaccine Contamination.

 Today’s song: Burn One Down

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31 thoughts on “Recovery post-XMRV

  1. Thanks for posting that video. I have been changing my diet over the last year and have had wonderful results. I see a wonderful Native American Holistic Healer and her mantra is:
    Let food be your medicine, Let food be your poision
    Let food be your life, Let food be your death …

    • As I wrote earlier I also changed my diet over the years as I was able to figure out which foods I reacted to. This made a huge difference with my gut problems, and it reduced my migraines too. I also come from a Cherokee and Choctaw heritage and it seems I’ve always been drawn to more natural chemistry approaches. Maybe just my nature. I’ve had better results too. And working in the area of nutrition also helps as far as knowing what foods contain which nutrients. I have access to alot of information.

      Although if another retrovirus or microbe should be found I have no problem with using pharmaceutical intervention to stop the progression.

  2. My suffering has been greatly reduced by the treatments given to me by Dr. Jamie Deckoff-Jones and my function has improved.

  3. “ME is on a continuum with MS and ALS.” Then let’s call it ME/MS/ALS, not ME/CFS.
    A continuum of fatigue means nothing.

  4. Hi Jamie

    Thanks for keeping us all going with your blog.

    I was able to listen to Judy’s talk in Newry, Northern Ireland today. She said that XMRV has never infected any organism but for the macaques that were inoculated and that they are continuing to study the data. She also mentioned the non biased next generation sequencing data from Ottawa.

    Thought you would like to hear :-)

  5. Does Lipkin have some new, advanced method for discovering viruses, new viruses, what kind of viruses? Can someone give a link to this new method, if it exists? If it does exist will he be using it to study cfs patients?

    Here is a study at Stanford that involves Lipkin. Is this study even worth doing given that current methods for discovering active borrelia infection aren’t even validated? But we are going to look for Lyme disease in cfs patients, right? Of course, right. Yeah, let’s just start eating right, stop the aspartame, all that crap. I don’t buy into any of this, but then I have to. What else am I going to do? Oh, and did I add that I hate that word “trigger?” If the infection is untreatable or never treated you get PCR positives and urine antigen positives. Really, just a trigger?
    Detection of pathogens such as herpes viruses, the Lyme disease agent, xenotropic murine leukemia virus-related virus (XMRV), Toxoplasma gondii, or any unknown pathogen that may be a trigger for chronic diseases such as CFS, CLD or other diseases. We are looking for such pathogens in a broad population of CFS patients at Stanford and comparing the findings to age- and sex-matched controls. Towards this aim we are collaborating with Manisha Desai, PhD, clinical associate professor of medicine, and Holden Maecker, PhD, director, Human Immune Monitoring Core, here at Stanford, and W. Ian Lipkin, MD, Director, Center for Infection & Immunity, John Snow Professor of Epidemiology, and Professor of Neurology and Pathology, and Mady Hornig, MA, MD, Associate Professor of Epidemiology, at Columbia University in New York City. We have met our recruitment goal of over 600 study participants, and are in the process of testing our blood samples for numerous pathogens, both known and unknown.

  6. Another helpful and informative blog by Dr Jamie! Thank you. Being the mother of one of the young women recently treated for a month intensive in Hawaii, with ongoing follow-up, I can attest to the description given re a handful of natural and therapeutic adjustments and treatment being the best possible help for ME to date – and we’ve explored many avenues (as you can imagine) over the past 8 years since Josie became ill.

    Whilst in Hawaii, Josie was very ill for at least the first two weeks, and not so crash hot the last two either! However, there were very brief glimpses of responses to treatment. A little bit of a lift after an infusion, a greater sense of well being after neurofeedback (which I don’t think Dr J mentions, but Josie does want to follow up with), a tiny bit more energy after oxygen …. just very small glimpses and no real change in symptoms – Josie still had pain, nausea, shortness of breath, slept most of each day through, tremors, headaches etc etc. She was unable to get out and see anything much – two or three small trips was all she could manage. Initially, we all (including Dr J) were feeling a little disappointed and sometimes even deflated.

    However, on coming home it has been a very big surprise, as Josie has been doing remarkably well! We expected another big crash post-flight. Well, it just hasn’t happened. We are past a week home and Josie is continuing to show a resilience not formerly experienced (by her) or seen (by me). She continues to feel markedly better in herself and has had friends over, been out a couple of times and seems so much more “herself” than she has done for the past 8 years! We are sooooo encouraged!

    The significant things seem to have been: the particular combination of therapies – oxygen, infusions and neurofeedback; changes in meds, especially hormonal treatment and gradual weaning from anti-depressants (ongoing) and change in supplements, particularly the addition of D3 and methyl folate. For Josie, medical cannibis is not an option, as her POTS seems to become worse with it and she has no significant improvement in pain. We know this through experimentation in Australia.

    Diet-wise, we eat organic and try to stay away from highly processed food. I do make the SCD yoghurt and have the books for grain free cooking. We know that this type of eating helps, but we do still have a ways to go in implementing it more fully into our lives. Josie particularly notices increases in gut symptoms and depression when she eats gluten and sugar in particular.

    So, although Josie still does have symptoms and does not lead a “normal” life of a 21 year old, the improvements so far are wonderfully encouraging and the trip to Hawaii has been a major beginning for Josie to have some of her life back and most especially, she is suffering less. Yes, she still has symptoms. But I think the big word here that Dr J has mentioned is “resilience”; and for Josie I think she would say something about feeling “lighter” and mentally so much better than she has in years.

    They symptoms persist, although I would say there is less pain overall possibly and maybe less nausea. We know there will be dips and cycles and challenges …. But, we think this treatment is the best on offer as something that can “tip the balance” (as Dr J says) in the right direction. It is safe and basically supports the body to help repair itself; and especially so with the right eating plan.

    Although I know all of these treatments have been around for years, and various medical people do offer them, or have offered them, I’m not aware that it has all been put together like this previously and offered as a programme of treatment. Also, I’m not away of the use of O2 in the way Dr Jamie uses it, although I do know low dose O2 is offered by some doctors.

    We are probably more hopeful for the future than we have been since Josie became ill 8 years ago. We are particularly happy that this protocol is safe and we have not gone down the paths offered that would have been so much less safe and quite extreme in different ways. Also with no huge “herx” reactions to contend with, which are in themselves, I think, questionable sometimes.

    THANK YOU DR JAMIE! You’ve made a huge difference to not only a young woman, but her mother and family and friends … There is an open door and a path, where before there were four walls. :) xoxo

  7. I recently spent a month visiting a friend in the mountains, above the pollution. In that clean air, I detoxed (complete with stench coming from my pores) and felt fantastic. This convinces me I have to look for a new home, somewhere the pollution blows out to sea, rather than where the pollution gets stuck in the valley and never goes away.

  8. Fascinating, as always. I’m surprised at the use of sublingual or chewable B12. You didn’t mention the form (methylB12, I assume). Have you tried mB12 injections (Dr. James Neubrander’s ASD protocol) or nasal spray? They are so much more helpful than oral mB12 for ASD kids, but must be very specifically compounded.

    • @ Dawn, I use high dose hydroxocobalamin intravenously in my modified Meyer’s cocktail. I’ve tried hydroxocobalamin injections daily for a month or two without much luck (small N), so currently am sticking with what’s easy. However, I’m always interested in what others are finding effective. The ASD community is ahead of us overall. In general, I’m opposed to anything that hurts every day, unless there is very clear benefit.

      • I put a link below, but it is meant for parents, not physicians. Basically, the hydroxy and methyl forms are turning different pathways. So many ASD kids (and I suspect ME patients) have MTHFR mutations and mB12 targets that pathway. I have POTS, but not ME. I also have an MTHFR homozygous mutation at two alleles.
        For the non-docs (this is oversimplified), the body has pathways where it makes chemical reactions. A typical person takes in b12 in various forms and the body needs to convert that b12 to methylB12. But if you have an MTHFR mutation, you can take b12 orally all day, test very high for it in your blood, but you would still be deficient in mB12, which the body then needs for another pathway (the pathways are interconnected, like gears). If you can’t make mB12 from standard forms of B12, your downstream pathways can’t function properly, unless you do a “genetic bypass” (dr. Amy Yasko coined the term, I believe). You supplement directly with mB12 and you can methylate much better and the downstream pathways get what they need. Unfortunately, mB12 doesn’t do a very good job when supplemented orally. That is why people do injections (preferred) or nasal spray (helpful, but less so than injections).

        In the autism biomed world, mB12 is a “big wow.” This is not true for other forms of B12. Dr. neubrander estimates that over 90% of ASD kids are responders to the protocol. I’ll look for a more medical link for you. In the meantime, I know there are studies out there by Neubrander, Jill James, and Dan Rossignol. If you haven’t yet, you might want to compare treatment protocols with an autism biomed doc like Anju Usman (Naperville, IL), Rossignol, Bryan Jepson, Kenneth Bock, etc. I think both sides would benefit. For instance, although mHBOT is in use in ASD, I’m intrigued by your use of normobaric oxygen and plan on asking our doc about it. Renting a chamber is just so expensive (although it was another big wow for us).

        • And here is a link to a chart of the methylation cycle for your more visual readers. If you click on the “complete methylation cycle” chart on the left, you can see genetic polymorphisms like MTHFR and where they affect the cycle at different points.

            • Thank you, Dawn, for the excellent links. It amazes me that I’ve now looked at the methylation cycle enough times that it is actually starting to make sense:). I remember when I realized that I could was reading retrovirology that used to be like Chinese. It’s kind of like that.

              I use methyl B-12, sublingual and chewable, which allows better absorption than oral administration. Sublingal and topical preparations are generally better absorbed than oral, and they avoid the first pass effect of the liver.

              Again, thank you for sharing here. ME/CFS treatment is badly in need of cross-pollination from the ASD community.

            • I am really gun shy now about asking patients to spend money on testing done by small, private, for profit labs. After my experiences in the Lyme community and now the travesty that was VIP Dx, at this point, I order from the large commercial labs only. Why do labs that insurance won’t pay for if it isn’t going to change what I do?

              I also try to choose supplements made by companies that have a track record with independent reviewers to support that what is on the label is in the bottle, e.g. I am not in any way saying that Dr. Yasko’s products don’t meet the highest standards, just that I am highly suspicious these days of labs, scientists and doctors that make money on tests and products.

              I have not yet seen any indication that so called “personalized medicine” exists yet. No matter if you elucidate one or more mutations in an individual, clinically, the choices are still the same limited number of things to try.

  9. Hi,
    Thank you for your blog Jamie,

    I’m wondering if you have tried low dose naltrexone. It is so cheap and it has been one of the few things to make me feel more human – especially on wakiing in the morning. Our dr here has suggested medicinal marajuana but we can not get it in NZ. Also, I wonder what you think of CCSVI and its treatment of MS and the recent comments by Dr Arata saying that he thinks he is actually treating dyautonomia and that is why they only get a good response in a certain percentage of patients. Worth googling if you have time.
    Jill (NZ)

    • Ali tried LDN for a year without results, but it was during Lyme treatment, so all bets are off. I have a few patients who have tried it for varying lengths of time without clear benefit. Tinkering with the opiate receptors goes against the grain with me, but if a patient of mine wanted to try it, I would not be opposed.

      • I had an awful experience with LDN and was just on it for a few days at a dose of 0.1ml. My ME is severe and I also have very bad dysautonomia. It seems to send your neurons whirring and everything into hyperoverdrive (the last thing we need!). I have still not recovered 5 months on and felt like I was going into heart failure as well. Please be very careful if considering this treatment. It has not been well researched. It can be very dangerous for some of us. As you say Jamie, it’s probably best not to tinker with our fragile brains with this drug. Be warned.

  10. I agree with this Jamie ” I consider diet to be a cornerstone of treatment. Food as medicine.” Fortunately I learned early on in my illness that food sensitivities and high levels of stress are the 2 things that will exacerbate my symptoms. I have gut issues and react to dairy, fructose, and sugar.

    It was also in recent months that I experienced a profound change in my health with adding nutritional supplements. These are the 2 things that have ever made a difference with my symptoms. Over the months I have experienced more energy, and bounce back from crashes quicker and they are less severe. My shortness of breath is also gone. I am not cured but I am way better then I was. And that makes all the difference in the world.

    The fact remains we need our illness to be taken seriously and we need treatment. And that takes research into what is causing this. I also have those antibodies as I was serology positive. I for one would like to know what that could mean. I am also very hopeful that Dr.’s Lipkin, Ruscetti and Mikovits are all working for us to find the answers.

    This illness is complex with all the symptoms we get. If even one person can benefit from something and it can lessen their suffering it is so worth. In my case something has.

    And I thank you as well for all you’re doing to help!

  11. Josie has had hydroxycobalamine sub-cut B12 injections for a period of over a year previously; she has also had LDN on two occasions for a few months at a time. No significant or obvious changes resulted.

    There was also no apparent effect from being in Hawaii – as in the air, change of scene, different environment etc. All much the same as at home.

    It has only been on return home that there has been a notable shift in things, which suggests the treatment is cumulative to my mind.

  12. CCSVI would treat dyautonomia but then the veins would restenose and the problems all come right back. We have to figure out why the veins shut down in the first place. I felt great for about 4 months after CCSVI treatment, but I have completely relapsed. Is the problem a biofilm caused by low grade brain infection and inflammation? Is it caused by low blood volume which would allow veins to collapse? Is it caused by malformed red blood cells that clog up the capillaries in the brain and thus decrease blood flow? I may get the CCSVI treatment again in desperation if nothing else works. I don’t know. We have to find the cause.

    • Paula, I think venous insufficiency means that the veins are stenosed (narrowed) or scarred, I assume from inflammation. Insufficiency on the arterial side causes ischemia or not enough supply. Insufficiency on the veinous side causes poor drainage. If the underlying cause of the inflammation isn’t addressed, then the problem recurs, unless stents are placed, which seems risky to me. Please note: I have little knowledge about this condition or the procedure. I’ve read Zamboni’s papers, some follow-up papers and I’ve communicated with you, and a few others who had the procedure without improvement or with rapid recurrence of symptoms.

  13. Agreed, LDN can be a serious problem. Bad effects can be different from Maisie’s.

    Also, my compounding pharmacy crushed tablets against instructions. Some claim that’s the problem; I don’t know.


  14. Happy Turkey! This week started pretty far down the scale. Yesterday morning, I went to see my Medonx Dr. To cancel my chemotherapy for cancer. I have been taking radiation treatments five times a week and chemotherapy once a week, for the past four weeks. Every weekend got worse and more devastating than the week before. None of the slow boat to China stuff my fifteen years with CFS had trained me for… so I went to tell him I could not continue. He talked me in to continuing radiation and he would stop chemo. He gave me an Rx for a pain patch and scheduled two rehydration sessions this week. Two hours yesterday and five hours, tomorrow. I got the Rx filled on my way home from yesterday’s radiation session. I applied the patch about one P.M. I went in for rehydration at three. I came home at five and poured my liquid nutrient into my tummy tube. I went to bed early. I slept through the night and awoke at 8 A.M. and felt so good I was crying. Tears of Joy are not generally happening with CFS… I went in for today’s radiation and went to the Medonx Dr.’s office and left a note that I had slept thru the night for the first time since starting chemo and radiation and said I am now willing to restart chemo. His office called this afternoon and said he was happy with the results of the pain patch and the rehydration and would resume chemo next week. My dead tongue and raw mouth/throat will not allow any goodies to be eaten on Thursday, but, now I intend to visit my kids and grandkids and enjoy a little family time. I will even try to drink some wine. I do not normally stay long at Thanksgiving, but, I thought this year I would not even show up, until yesterday.

    Yesterday, all my troubles seemed to fly away, now I need a little time to pray. Oh, I believe in yesterday… sorry John & Paul ;)

    I have no illusions that this stuff will cure cancer forever, nor CFS, but, at least now I believe I can finish trying my best this time.

    It is the best thing, lately :)

    Who writes this stuff?

    The pain patch is for Cancer treatments only. A patch lasts for three days and I got ten, so I have a thirty day supply. My tongue is still dead, I cannot even smell or taste a fresh pot of espresso, but, I can sleep. Something my pain had stopped since cancer treatments started. When my radiated mouth (my metastatic cancer was a lump in my neck) increased to bleeding this past weekend, I decided to quit treatments and just die. This was not my plan. This is far better.

    Man plans and God giggles. Where did I hear that?

    Why am I giggling, now?

    Because I can lay here and fall asleep. That was impossible Sunday, and four weeks before.

    Night, night, folks.

    We do not know what is coming. But, it just keeps coming.


    Sometimes I am not suffering. Imagine.



    • You continue to inspire me, Al. Why worry whether the glass is half full or half empty? Just be glad there is still some water in it. I’ve had a hard couple of weeks. Nothing like yours, but a hard time. Thank you for making me giggle with you. Thank you for sharing your light.


  15. Thanks again Jamie,

    I’m sure ARVs are working for me, but a good diet, supplements, and living where you are happy, can have a huge impact. A CPAP machine was one big change for me, and if you are reading this and not on one, get tested for sleep apnea. If you are too tired to do most things it stands to reason you are too tired to breathe properly. The first test is wearing an O2 clip-on monitor on your finger for one night. This is done at home in your own bed, and it’s often FREE. I also take 5 mg. of Lithium every day. Lithium is used to treat ; Bi-polar disorder and ALS, it is being looked into for Alzheimer’s, and years ago there was a study in Texas, where drinking water had 1-2 mg. of Lithium per liter and those towns had a lower rate of murder and suicide. I think at some point in the future there will be an MDR for it, as it seems to be linked to mental well being and neurological health. I have Celiac Sprue and keep on a strict gluten free diet. The move from Southern California to Humboldt County took me a year and was a huge challenge but well worth it. My health improved in just a few months of living here.

    I’ve continued to take cycloastragenol (6 mo.) as after 5 years of not being able to get beyond my 1.3 mi. morning walk without developing hip pain. I have for three months been walking 2 mi., which now includes steep hills, and my hip is fine. Four weeks ago I started working out with dumbbells again (the weights, not the people), just once a week and I’m being very careful to use light weights, nothing to stress the joints. The importance here is to develop the habit of an exercise routine. I will only add weights when an exercise becomes too easy and then increase the weight by a small amount. If there is a joint flare up, I will stop that exercise and only resume when all pain is gone. I have learned this through trial and error.

    I found this article at science daily. It basically states that, the acidity of vacuoles is critical to the functioning of mitochondria.

    When I first got sick, once or twice a month I would start my day doing chores and thinking “This is so easy, why haven’t I been doing this all along?” and three hours later I’d be flat on my back exhausted. So I wondered, what was the physiological change that took place so quickly. It wasn’t glycogen deficiency. I was getting more than enough carbs. It wasn’t that most of my mitochondria had died off.These brief episodes of normalcy proved they were still there and capable of functioning. There must be a million things going on in a cell that I know nothing about, but I would imagine the ph of a vacuole is something that could change in three hours.

    Could the causative agent for ME/CFS be something that lowers vacuole ph?

    Is there a way to safely raise the acidity of vacuoles in humans?

    I believe life will get better, you have to be optimistic and hang in there.

    There is a song by Fun and it’s a good one “Carry on”. It’s my new mantra. It gives me goose bumps every time I hear it.

    If you are lost and alone
    Or you’re sinking like a stone
    Carry on
    May your past be the sound
    Of your feet upon the ground
    Carry on
    Carry on carry on

  16. Hi Larry,

    I used to walk every other morning for 45 minutes, would work my heart beat monitor up to 180 and ramp down. After five minnutes, my heart rate was below 60. On the days in between, I worked out with free weights. I had multple schedules of sixteen exercises that I did 20 reps each on, right out of Arnold Schwartzeneggar’s Encyclopedia of Modern Bodybuilding. I was in great shape, for nearly ten years, before I got sick, in 1997. When I got sick, I could not even do the warm up stretches I did every day before either my work outs. We may have the same disease, but over a mile a day is impossible, in my world. I am glad you are improving. I tried a CPAP, with no good result, for a year. I am glad it helps you. It did nothing for me, but, I only tried for a year ;) We are all different. CFS did not stop me from getting cancer. That gets much attention in this cancer mad society. I do not recommend it, neither ;)


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