Health & ME/CFS, This Crazy Life

I Will NOT Go Quietly Into The Dark

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In my last post, I said I wanted the fire, the passion, back in my life. Over the last few weeks, I’ve done a lot of deep thinking and reflecting, while struggling every day just to keep my ship from sinking.

Well, I’ve come to some harsh realizations and conclusions, and I’m feeling pretty damn passionate.

It has become quite clear to me that the time has come for a full scale war.

A take-no-prisoners, risk-it-all, war.

It is that desperate.

My body is that desperate.

Ravaged by years of chronic illness, my muscles have withered away to nothing.

Pillaged by viral invaders, my immune system doesn’t know which end is up.

Overwhelmed by colonizing microbes and leaky gut syndrome, my gut doesn’t know food from foe.

Every resource in my body has been drained, thrown into the war effort against ME/CFS for long year after long year after long year… I was diagnosed in 1999, but sick well before that.

Hasn’t there been full-scale war before now, you ask?

Yes. At times.

But also times of resignation; of trying just to hang on, hopeless of ever improving, just patiently awaiting the seemingly inevitable. The slow, slow, spiraling downward, so slow as to not provoke a passionate response. Too tired to hope, sick of changing my meds, or trialing this alternative therapy or that.

You could call it “patient burnout,” and I suspect many of my fellow patients know just what I’m talking about. The year after year of trying to hit on a combination that would stop the downward slide without success, until you just stop really giving it your all.

But the last few months, the slide hasn’t been slow. It’s been alarmingly fast.

Now I have this looming sense of being back-against-the-wall, it’s-now-or-never. Live – really live – or die.

Because I know my body simply can’t go on like this.

It can’t sustain the fight much longer the way it has been this Summer: the periodic adrenal crises and crashes; the repeated episodes of diarrhea; the weakness and shakiness; and continued loss of muscle mass. I have only to look in the mirror, or to look at the deepening indentations in my hands, feet, or wrists, to look at the starkly showing breastbone, collarbone, and ribs, the sagging skin, to know that this is simply unsustainable.

I’m not being overly dramatic.

I’m being realistic.

And it’s not sustainable – or fair – for my youngest daughter, Rhiannon, either.

My elder daughter, Terra, is 29. She has worked hard and built a life for herself, with a career she loves in the military, and graduated magna cum laude from college while working full-time. I’m couldn’t be more proud of Terra and her many accomplishments. I’m also relieved that she has established such a rewarding and fulfilling life for herself, and that she is an extremely strong and independent woman.

Whatever happens to me, Terra will be okay.

But Rhiannon has been carrying the weight of being my primary caregiver for 7 years. She is only 18 1/2 years old. Rhiannon has mild ME/CFS herself, but more urgently, her life is on hold right now. Because of me. Because I am so incompacitated, and as I have gotten even more so over the last few months, her burden has gotten even heavier.

And that is simply unacceptable.

It breaks my heart, every damn day.

Rhiannon deserves a life, too, one where she can go and do things without worrying I am going to literally die while she is gone. Without worrying that I am going to die before she has gone to college, gotten married, and established a life for herself. Without worrying that she is about to become an orphan – her father died just over a year ago. And without the stress of my illness making her even more ill.

And you know, I would really like to have some years of life back that aren’t being lived out of bed.

I want to garden again. Walk in the woods. See my grandchildren be born – and they are not planned for a number of years yet.

Rhiannon promised me a trip to Chincoteague & Assateague Islands, to see the wild ponies, something of very special signifigance to me. We were supposed to go this Summer, to celebrate my 50th birthday.

But I haven’t left the house for the last 3 months except to go to the doctor.

Issues like these, they help bring the Fire back into your heart.

So what’s there to do that hasn’t been done in the past?

Plenty!

REFUSING to surrender to the Living Death is a start. Attitude is important!

Get this, ME/CFS! I’m not done living my life yet! I’ve got things to do, people who need me, and I’m not just going to go quietly into the dark!

Every War Needs a Good Stretegy

Strategy is vitally important, and at this late stage in The War, that means pulling out all the stops, and a lot of thinking outside the box.

It means research, reviewing all my labs, running my clinical history over again, and connecting all the dots.

If the majority of rx meds have failed to do much to make a difference, this is where I look elsewhere for answers – and for weapons to add to my arsenal.

In May, I found one big clue, one big fat juicy hint at the Enemy’s original weapon, the one that caterpaulted me into this mess, a toxin we’ve all been exposed to. Knowing that, I know how to undermine it, and begin to repair the damage.

If the invading hordes of viruses and microbes are resistant to the meds I’ve taken for years, then I hit them with something new and unexpected – this is guerrilla warfare, and the weapons I need come from the land, from the Earth, the trees and plants: Herbal Anti-Virals & Anti-Fungals.

Heal the gut and my body can absorb nutrients again. Just as importantly, my immune function can be restored to proper functioning. Since my own army of beneficial bacteria has been annihilated, I’ve recruited new ones – with something far beyond yogurt or standard probiotics, and have already had a “healing crisis,” showing that my immune system will respond.

When reviewing my labs, I was reminded I have both MTHFR mutations – and the full ramifications of those are something I’m just beginning to understand, but they sure are one big piece of the puzzle (and one many of us have in common).

There is a LOT that needs healing, a lot of systems in disarray, and if I’m neither eating correctly because of PAWS or digesting correctly because of malabsorption and leaky gut, then there are a lot of things that need to be supplemented. I’ve been researching into those, with my doctors’ help.

I’ve already found one supplement that has helped tremendously with cognitive issues, much to my shock and surprise – I wouldn’t have been able to write this post without it, and highly recommend it (I need to take it early in the day or it keeps me awake): SERIPHOS.

This is sink-or-swim.

I either figure out exactly what my body needs, thru careful research and with my doctors’ guidance, and get it and take it, or The Enemy is going to chalk up another victory.

And that’s just not acceptable.

I will not go quietly.

I want my Life back!

38 thoughts on “I Will NOT Go Quietly Into The Dark”

  1. Ash, I’m glad to hear you haven’t lost your will or your hope. For your consideration, Dr. Wahl’s eating plan with which she healed herself from progressive MS. Keep moving forward.

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  2. Wow. Very powerful. I’m hoping some of your fight leaked into my brain. I haven’t left the house for exactly a year and I don’t know where to start with treatments, so I don’t try anything. I can’t wait to see what you decide to do/take. Good luck!

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  3. PS: it’s interesting what you said about Seriphos. A doctor I saw put me on it for insomnia- to bring down high nighttime Cortisol, but it kept me awake even more. My regular integrative medicine doctor took me off it and put me on PS instead (phosphatidyl serine, I thInk). I still have an unopened bottle of seriphos. It never occurred to me to take it during the day for brain fog… I’d be slightly worried it would bring down my day time Cortisol, which was fine… Anyway, thanks for the food for thought! http://elizabethmilo.com/2013/03/22/doctor-doctor-gimme-the-news/

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    1. Hello Elizabeth! I’m sorry you’ve joined us all in the world of ME/CFS, but hold on to hope – a fair portion of people are able to put it into remission in their first five years years, which you are in. Since you have adrenal stress syndrome (the high nighttime cortisol), rebuilding your adrenals is essential. I’ll be posting more on supplements later, but was so shocked at how effective Seriphos was that I didn’t want to wait.

      I have progressed to adrenal insufficiency, and PS (Phosphorylylated Serine0 was recommended by both my integrative PCP and LLMD. Seriphos IS PS in a special, high potency, complex. Most PS is 100 to 300mgn whereas Seriphos is 1,000mg. I’ve tried so many supplements over the years that I was highly sceptical, but this was the one my LLMD recommended and sold, so, not having anything to lose… the first night, I took it at bedtime, and was wide awake and crystal clear almost all night – unheard of! I’ve been on it over a week, and have learned I MUST take it when I first wake up to avoid insomnia. The difference in cognitive functioning and attitude and even energy (a little) is really striking.

      So I suggest you crack that bottle open and give it a try! Hopefully it will help you as much as it’s helped me. I’ll be following your blog, and will be posting soon on some of the issues we have in common, like gut dysbiosis, why your doc said to get off GMO’s, and other supplements that may help you, too.

      I don’t know how many friends you have in the online ME/CFS patient community, but I’ve been blessed with very many, and their love and support means the world to me. It’s so nice to meet you – and I’m a dog lover, too. Take care of yourself!

      Ash

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  4. You are a strong sister, a sister of three and we are all strong, even though of course we get frustrated. I can’t find my energy anymore, I’ve spent the last two days quite happily, not much pain but no energy either. Lexi lying on my feet and I feel comfortable, But I have no desire to move.Am gaining a little weight which my Dr. ordered, never thought I would hear that iln my lifetime. There was an article recently about leaky gut, i must find it for you, Life is not easy. My friend with all those problems in ICU is just fine and yet we still suffer. You, Michelle and I. I’m sad that summer is ending and that the sun will go away. I love you and am worried about you and michelle. if you want to talk, call or i can call you. Love, Laurie

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    1. Laurie, dearheart, it is my intention to share what I learn with everyone, and I think that you, Michelle, and I are in similar situations, although at different stages in the syndrome. I think a lot of what I’m learning will be helpful to you two, too, and I fully intend to to sweep you along in my wake, and help all of us in a return to as much health as is possible.
      So no losing hope, no giving up, no giving in! I’ll be posting soon on other supplements, and in the meantime think you should both give Seriphos a trial (see my other comment rely for more about that). Since Amazon has a $25 minimum order for free shipping, I’ll fb pm you with something else to add to it that’s essential, ok?
      Complex problems require complex solutions.
      Keep the faith, dear sister!
      Much Love,
      Ash

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  5. Sorry to hear you struggling. Glad you aren’t going to give up. I can relate to everything you said. I, too, suffer from many chronic illnesses. Doctor’s seem to think it’s an autoimmune disease because there are so many organs and body systems involved. I spend the majority of my time in bed, except for doctor appointments. I’ve recently started on this mindfulness and meditation and it does work. It does not take the pain away, however, it does help me to better cope and deal with my emotions in a much healthier manner. I’m more positive. I hope with my new attitude I will be able to start doing some small things, new things, because I can’t do the things I used to do. It really sucks and I’ve given up on several occasions, but for today I choose to fight and regain some sort of life outside my bed. Good luck with your journey.

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    1. And I wish you good luck with your own journey! It is so hard for people who are not chronically ill to understand the emotional toll it takes on us, as our quality of life is reduced so drastically. Meditation and mindfullness certainly help! I try to spend a few minutes on our screened in porch multiple times a day, both for te exercise, and for the chance to be observant of Nature. There is so much beauty in the world, and each moment of each day brings a new vista, and I never know what I will see. Last week I got to help rescue a fledgling hummingbird and see him fly off, and many deer, and lovely sunsets. And I relish every moment!
      Wishing you Peace and Hope,
      Ash

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      1. Yes, I’m really starting to get into nature, myself. I try to sit outside every morning, before it gets too hot, and read or write for at least an hour and sometimes longer. So, friend, hang in there. Sounds like you have the right attitude. Live one day at a time. Forget yesterday and don’t worry about tomorrow. Just live in the moment. That’s all we can do. Wishing you peace and hope, as well.

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        1. To My Sisters, my mother told me about a new friend she met and that the woman (who has our last name strangely enough) had Fibromyalgia. She told me all about her aches and pains as if this woman counted and she could feel sympathy..and she even said “like you.” But, I’ve never heard these words, maybe out of fear or not wanting to deal with any of her children’s pain, but she could do a great job with a woman she had just met. That’s how it always has been in my life with her.Yet a stranger walks in……thank you for being my two soul sisters. I love you both. Laurie

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          1. Wow, I know exactly how you feel. I have dealt with the same thing with my mother and I want you to know I care. Its like getting stabbed in the heart. I think it must be their era. Because I cant figure it out.
            Remember that your sisters here love you and support you in your journey and my heart hurts for you. Love you sister.
            Dawn

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  6. Ash, just read your post and its late but I wanted to at least acknowledge you, and let you know you are not forgotten and that I think of you often and will pray for God to renew your strength. I am very sorry you have had to suffer to this extent. You are a mighty fighter and I know you have a will to live…please don’t let yourself down. Stay positive and keep fighting. You have hit rock bottom so there is only one way to go and that is up. Hang in there please. You may think that your girls are ok now and old enough to take care of them selves but they NEEED YOU!!!!!! They need you no matter if your sick or if you were well. You are their mother, mommy, mom, friend, and their protector.
    Please don’t give up. We are all praying for you.
    Love you Friend,
    Dawn

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    1. You are not forgotten, either, Dawn, and I’m sorry we ALL have to suffer like this. I’m hoping some of what I’m figuring out here at rock bottom will be helpful to more than just me.
      I do know my girls need me, especially Rhiannon, and would keep fighting if only for them. But I’m also fighting for myself, which I think is important -I think we need to want in our deepest depths of our souls to be well for ourselves, in order for healing to happen. It’s far too easy to be beaten down by years of misery until we just don’t care anymore, and I’ve been there. But I’m not anymore. So fight I am!

      You keep fighting too, and know I’m sending Love & prayers winging your way!

      Ash

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  7. this was my life for 16 yrs; from 40 – 56 yrs old. i was sure i was going to die like this. i saw jay goldstein in 2002, i did every protocol, i was miserable, couchbound and isolated. it’s a miserable existence…

    it’s always a risk to say this: ash, i’d really like to share with you how i recovered. it has to do with sleep, carbs and throwing away all the drugs. i moved to greece, i climb hills, i have no more pain and cfs sickness. if you want to know, please write to me: moineau@charter.net.

    ~laura xoxoxoxoxoxoox

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  8. Dear Ash,

    I love your post, but it is heart breaking too.

    You know, I still wish I could come there and live nearby. The doctor and his prescription seem to have a hold on me that will never go away.

    I just woke up again, at 2am this time, instead of 4, which means today will be another, another!!!!, long day of fatigue and brain fog. I was sweating so bad my bed is soaked and my hair smells like a wet dog. I am always hungry, crying, in pain and the fatigue lately makes me think I’m dying with cancer or something. No joke.

    A friend of mine said yesterday, “Don’t you think your tired because of the stress of your home?”

    I hate it when people say that. I don’t think it is because of that, but instead, I think I have CFS! And now they say Lupus.

    I am so sick!!! I don’t have the energy to go to war. I don’t have the brain power anymore to do research. If my son’s father was alive, I’d leave this earth. No wasting time either.

    The women’s gardening group I joined is so awesome, but one day with them, and I can’t move my hands sometimes, and they hurt so bad. I will probably have to get a steroid shot next week.

    We are supposed to go camping in the mountains today. I was going to go to a nearby one (relatively) just for the short drive, but I doubt even that will happen and I am crying every day b/c I miss the mountains so much. I need them like people need food. If somebody would pack my car, I think I could make it to drive.

    I know this note is my experience, but your post brought it out in me. I need to talk so much. I need to be heard. Nobody can hear me right now. Nobody! My son is… well, so devoid of sleep that his brain can only hear so much. I think he needs the mountains too. We were so uprooted. After ten years, you’d think I would feel at home.

    I hope you keep your Spirit strong, and it is strong! I know your body is weak. I hear that and I understand all too well. I do. I told you I feel like I’m withdrawing all the time. I should have gone to the doc this week, but I could not drive there. I could barely walk a few days. Maybe all this sweating is causing my meds to leave my body?

    I wish so much we could get a group of women together because fighting a war takes more than one person. We need a way to fight together.

    I’m sending my love straight from the heart. I will say a prayer for you, and Laurie. I wish so much we could get better.

    I hope to visit the Alchemist again soon. He has some Prescript-Assist and they work wonders. If he didn’t give me a large discount I couldn’t afford them though. He also gives me other supplements, so I need to get to the place you are. I need the fight in me.

    You and Rhia are close to my heart. I wish I could offer you both more. I am sorry that I haven’t been around as a friend to you, or her, or Laurie.

    My prayers have you in the center, with Neil, Ruthie, Rhia and Laurie too. I love you all!!!

    Your Spirit Sister,
    Michelle.

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    1. Ah, sweet Michelle, please know I hear you loud and clear, I understand and feel your pain, heartbreak, and despair, and I Love you so much. We are all in this together, and as I told Laurie, it is my intention to share what I am learning with you, to sweep you up in my wake, and let the fire and passion in me help bring us all to a better state of being.

      We ALL can be healthier than we are – of that I am positive – and we will get there together! One day, we three sisters will sit on my deck, watching a beautiful sunset over the Blue Ridge Mountains, laughing and sharing, bonded together thru our fight against our mutual enemy, and remembering the bond that began well before this life. Do not lose hope – keep that image of us sitting and laughing together as your guide, keep in in mind, and it will be. I can see it so clear.

      You know I understand just what it is to need the Mountains like you need air to breathe – it has always been that way for me, too. We’ve got to get you up here for a visit.

      I sent Rhia and Ben to a very special camping event and festival this weekend, 2 hours away. They met there 5 years ago, and we used to go every year. I was supposed to be off my pain meds, and we were all supposed to go, but I cannot do that. Rhia was very hesitant to leave me alone, but I have neighbors on call for backup, and I insisted she and Ben go. They needed and deserved a break and a chance to be with friends after the Summer we’ve had.

      About the Prescript-Assist – did I tell you about that? You can get it from Amazon. It is what I meant when I mentioned healing my gut, and will have a full post about it. But you have to go very slowly with it – when you start taking it, it can cause a healing crisis, as it stimulates your immune system to start producing antibodies. You should take no more than one every other day for a while, then one a day a while, and slowly increase. If you get flu-like symptoms, or increased pain, fatigue, swollen glands, fever, sweats, etc, it means your immune system is kicking into high gear, and you need to stop or back off until the symptoms pass.

      It is a very important part of healing, because it heals your gut and your immune system. Here are links to it on Amazon:

      Prescript-Assist Broad Spectrum Probiotic Prebiotic Complex 60 Capsules

      Or it’s slightly cheaper per capsule if you get it in the 90 capsule size:

      Prescript-Assist ~ Probiotic & Prebiotic Blend ~ Scientifically Backed Most Advanced Probiotic ~ 90 Capsules

      Your night sweats could be your body detoxing from killing off viruses and possibly even tick borne diseases, part of a healing crisis caused by the Prescript-Assist. This is a GOOD thing, because it means your body is fighting what is making you sick!

      One thing that can help you detox is burbur extract – it helps your body eliminate toxins, and really increases my sweats, which is also a good thing. Here it is:

      Burbur Detox 1 Ounce

      I also think you really, really, should try the Seriphos (link in post). Seriphos will help your body and mind deal with your high stress level, and provide much needed adrenal support. Try one in the morning, on an empty stomach, and see how you react.

      I know funds are tight – if you had to prioritize, I would suggest Seriphos first, then Prescript-Assist, then Burbur or one of the other supplements I will be blogging about (maybe one of the anti-virals, which are also anti-inflammatory…).
      You don’t even want to know how many I’m throwing at the Enemy right now!

      Remember I Love you, Michelle, and I’m holding you tight in my heart, you and Laurie both! I’m here and available if you want to talk, okay? You know I will truly hear you, my sister. Be strong!

      Ash

      Disclaimer: I have an Amazon associates account, so if you order something using those links, I earn a small Amazon credit (4%). But I wouldn’t be linking to them if I didn’t believe in them 100% and if these weren’t the best prices I could find.

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  9. Dear Ash and Michelle,
    I have NO immune system, Hashimoto’s Thyroiditis does that to you, I can’t imagine jump starting something that doesn’t exist, right? Also, Ash, have you ever looked into cuppiing? I know you will both laugh thinking about this coming from your citygirl friend but I’ve actually had it done. It’s a massage with little cups (applied only by someone who is WELL-Versed and accredited) to rid your body of toxins, anything that you need healing with. I’m not sure I like all these extra drugs though if Ash says it’s safe, I trust her more than the FDA. Love 3rd soul sister, Laurie

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    1. I’m not adding drugs, Laurie, I’m adding essential nutrients that are sorely lacking, and rebuilding my immune system and gut. 80% of our immune system is in our gut, and our gut flora (beneficial bacteria or probiotics) act as a necessary part of that. Many things cause our natural flora to get killed off, from the years of antibiotics I was on for Lyme, to pesticide residue that is present in almost every food we eat, unless it is organic.

      Prescript-assist has been studied in clinical trials, and shown some remarkable results. It is a probiotic like Align or Colon Health, but contains many more strains of beneficial bacteria than they do that should be present in our guts. So it will both help the immune system to function correctly, and also help heal my leaky gut syndrome by getting rid of the bad microbes that are in there.

      Seriphos is very safe, a natural supplement that we should have already. It was recommended to me by both my LLMD who is a rheumatologist and FM/CFS specialist, and my PCP, who is a FM/CFS specialist. We are all deficient in a lot of things, and our bodies need help. If we can correct our imbalances, we will feel a whole hell of a lot better.

      And be sure that I’m not going to suggest something I haven’t tried myself, and I’m not about to try something myself unless I’ve researched it heavily. My body is too precariously balanced to take risks, so I’m being very careful. But on the other hand, if I don’t figure out what is missing and needed, the consequences will be dire.

      With Love,
      Ash

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      1. Ash, that’s not what I am saying, I said nothing about drugs. I’m wondering if YOU have NO immune system like me (with an auto immune disorder) this wouldn’t give you one, right? you can’t reverse what you don’t have, I’m assuming. Like I said before, I trust you a million times MORE than the FDA by far, sweetheart. Love you, Laurie

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        1. Both of us have functioning immune systems, Laurie – if we didn’t, we’d be dead. However, in ME/CFS and FM, we have both immune deficiency and auto-immune issues, like your Hashimoto’s, which is your functioning immune system attacking your thyroid. Mine is attacking my stomach lining and god knows what else.

          But if you take a look at the typical ME/CFS or FM patient’s labs, they will look like mine – I have very low overall immune function, but very high antibody production against re-activated viruses, especially Epstein-Barr, the virus that causes mono, and other herpes family viruses. Our bodies are trying but failing to fight off a slew of infections that most people get, and that then go dormant.

          But our immune systems are there, and as my healing crisis proved, my immune function can be improved. And if it can, then my body may be able to fight these viruses into dormancy. But it needs help, which is where Prescript-Assist comes in, and also herbal anti-virals.

          Neither of our immune systems is totally gone, Laurie, and we CAN rebuild them! ❤

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            1. As to an immune system, I’m confused. Or rather, ignorant. Okay, both.

              Immunologists at UNC Chapel Hill told me in 2005/06 that they did not have a way to measure the immune system, but lately, I’ve read articles that make reference to tests results showing how well the immune system is functioning. So, which is it? Test or no test?

              I believe Ash is correct when she says if we did not have one we would be dead, as the immunologists told me that as well.

              I would like to understand whether my immune system is overactive or the opposite.

              Much love to you guys,
              your sister,
              Michelle.

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              1. Age old question lovey, my first Rheumatologist, a crazy genius told me our immune systems were STRONG, SUPER, DUPER STRONG, everyone else said that they are low, subject to get everything easily. I prefer thinking about my first doctor, the nut. It keeps me going. Believe, believe, believe.

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          1. You know, I forgot about the Prescript Assist and my son and I, while taking them, never felt or functioned better. He especially!!! But then, he took them more regularly and at a higher dose than I did. We need those again perhaps.

            They are expensive, but our healthcare friend used to provide them for us. I’m not sure if he is still ordering those, but I will ask.

            Also, Ash, what tests tell you your overall immune function?

            Love and Peace.

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  10. Thanks for your reply Ash. Obviously, it was early morning and I was raw with emotion, but hey, nothing like a time to let go and be real! Thank you for the space/place to do that!

    I’m not on Prescript Assist at the moment, but the probiotic I’m talking about also comes in bottle of ten pills, and I take all ten at once. The cost is 17 dollars, but I received a large discount. This supplement and dosage was recommended by the Alchemist/Naturopath/Master Clinical Nurse.

    I need another ten pills, two more times, he says, but as of yet, I’ve never been able to follow up like that.

    (There is a chance I have confused Prescript Assist with another type of probiotic that the Alchemist has given me, but I will check, and I sure thought the bottle of ten pills was exactly that.

    Neil and I both used Prescript-Assist probiotics last year. They worked wonders and I am regretting my not keeping things going. Pneumonia kicked my butt, remember?

    I need to get back on the wagon! (Or is it the other way ’round)?

    Honestly, I believe the PA probiotics are the number one supplement, out of many!, that brought my son out of Metabolic Syndrome last year, including over sixty pounds gained in two months, from having been basically forced to take a large dose of Zyprexa, a drug known to cause this syndrome and diabetes.

    Taking lots of supplements does scare many people and doesn’t feel ‘natural’, but the experts whom I’ve seen and consulted with have each said this is very important.

    Unless you are eating the greatest purest raw food on the planet, for particular illnesses, such as a serious mental/neurological illness or CFS, then supplements are extremely important. I have no excuse for having gone off mine! Except for getting pneumonia, and the later diagnosis of Lupus, and the fatigue, the latter of which seems to be my greatest enemy.

    The experts I’ve consulted with are the Master Clinical Nurse, whom I personally refer to as the Alchemist, and is now practicing natural medicine, and a well-respected Holistic Psychiatrist. They both told me how very important taking the right supplements are for a person who has a serious illness. They also say it takes a lot of supplements! The psychiatrist says that is where the most money goes each month, although, it is not an unreasonable amount of money. Insurance companies pay so much more for their “approved” drugs!

    Just taking the ten pills (of Prescript-Assist) causes bowel movement where there wasn’t any due to medication side-effects. Perhaps there was a bit of a healing crisis from ten pills, but it was not bad, and very good for my innards!

    Sour Kraut is excellent too and works like the probiotics.

    I’ve never heard of Seriphos, I don’t think, until this post. I will ask our naturopath if he has or uses it.

    I gotta go now. I might head to a mountain, if the weather permits, and I can just get my stuff into my car!

    I love you Ash, and you too Laurie!

    I wish you a day that brings some peace and wellness.

    Love, Michelle.

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  11. Ash, I have been reading your blog – your gifts are apparent and are multifaceted. Your struggle, like many of us, is profound. I am a biologist ( former diagnostic microbiologist/ then science specialist teacher) who ‘ lost her life’ at age 49 – now 15 years ago. I have led a large support group since 2001- attended conferences, dove into PubMed, wrote to researchers, talked in depth to probably 800 or so patients. Also published an article in Fibromyalgia Frontiers. still do not understand why we can not seem to get ‘well,’ but I have some observations to share.

    Virtually all of us have some degree of scoliosis. Also, many other physical differences: high- arched palate with some underdevelopment of the upper palate – ie teeth roots sit in sinuses, one side of face slighty smaller, vertebral differences like spina bifida occulta and cervical ribs, hemangiomas in the liver and thoracic vertebrae, feet/ finger/toe differences- huge bunions, hammer toes, flattened ‘hitchhiker’ thumbs, rotated or crooked index/ little fingers, loss of neck curve ( in literature), uneven pelvis with sacral dysfunction, long redundant colon – possible congenital malrotation/malattachment of intestines, crooked tail bones, deviated septum, and more. Also, at one meeting 55% of us were Rh negative. This makes no sense biologically, as before Rhogam was invented, our reproductive potential could be severely limited. The highest % of Rh neg blood in the world is found in the Basques – at 35%. Many ( most?) are allergic to sulfa/sulfites.

    Also in us and our families are wonderful gifts: verbal, intellectual, caring, kind, gentle, longevity, psychic and intuitive gifts, healing gifts. So who are we? Where did we come from? Why are we here? Why are so many of us sick at this point in time? The answers to these questions may be surprising, and I don’t claim to know what they are- though I may be getting some fuzzy ideas.

    I am also weaning off opiates after 14 years. Now stuck at 15 mg oxycodone. Have only weaned 10 mg per year ! It seems to take about 4 to 5 months for any sort of adjustment to just a 5 mg drop. A little Nuvigil seems to help, but can increase pain even more.

    I have appreciated the self- healing videos on You Tube.

    Believe.

    Blessings.

    Like

      1. Jay Goldstein was a CFS doctor, of whom I know virtually nothing. He’s recently retired from what I gather.

        And no, Laurie, this is not the tribe blog, but my own very neglected one. I’ve been so focused on my research and trial and error, and with our circle, that this has fallen by the wayside. And with the onset of the severe hormonal migraines, though I have recently (as in yesterday) made a bit of a breakthrough with dealing with those.

        I have learned so much in the last year, and want to share it with others besides our group. Working on it, slowly, as the migraines allow. But I no longer feel ready to slip away into the dark, and that’s a very good thing, indeed!

        Ash

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