Richvank Please help me...Glutathione (GSH), LDN

Discussion in 'Fibromyalgia Main Forum' started by MamaDove, May 22, 2008.

  1. MamaDove

    MamaDove New Member

    I feel as if I am getting close to the root cause of my problems and with that still seem to come more questions...I posted the below the other day looking for specifics on GSH, such as where to get it, in what form, what detox effects to expect in my case and should I begin it along with LDN? Could you help me with this...I went through my most recent history and it seems as if I mentioned THE pertinent info needed to make some recommendations...You could also read my profile although long and no paragraphs...Sorry that I write in this manner, the illnesses caused me great cognitive issues but then levaquin and solumedrol along with other meds 'fried' something up there and I am still trying to get it back so words tend to come out this way at times...I really am quite intelligent :) Or shall I say, was... :(

    I finally found a new doc who listens, has a brain,zero ego issues and cares about his patients...Can you say YAY!!!

    Having just gone through JUST my history and what I have been diagnosed with on my first visit, he mumbled 'you have had many surgeries'...He ordered lab tests due to his own curiosity, such as CBC, TSH, ESR, Celiac, etc...The only things sticking out are Low Lymphocytes, low ferritin (although he is not concerned due to the normal sed rate), elevated AST @64 (which is not too high)...Generally I have had a very high ANA and IGg and IGa, inflammation markers...

    I picked up my labs from his office and was going to wait til my next appt to discuss them...He runs out and gives me some literature...To my surprise, it was titled "Introducing Essential GSH", distributed exclusively by Wellness Pharmacy.

    After 18 months dealing with all maniacal doctors who clearly didn't care to help me with all my requests for trying LDN for Crohn's, running a CDSA to find out the actual digestive issues that could be the cause of the gastro bleed along with investigating the root cause of my problems, this angel was sent to me...

    He too lurks on boards like these getting info for his patients, like myself, who have issues with drugs and are willing to sacrifice certain things to get well...

    I finally did the Sage Med Lab delayed food allergy testing (needed a doc in Florida for that) and found that I have issues with beef, dairy, oats, carrots, apples and many more foods...I eliminated them this past Monday...

    This doc also gave a script yesterday for LDN, low dose naltrexone, and my compounder is ordering the pure powder for me to avoid an allergy to the pill additives, so I have to wait til next week to start that...

    The only meds I am on curretly are Ativan and Colazal (for colitis exaserbation), still cannot find the cause of this rectal bleeding...Last doc says Crohn's, pathology and I do not agree as well as my new doctor, however we will concur that it IS auto-immune...

    Looking into GSH and seeing all the posts by richvank, I have a strong feeling that GSH is an issue for me but the concerns I have of a detox reaction are clearly causing me anxiety, to say the least...I almost died from meds last year and I have fought back all I can, all alone, to become mobile again, I cannot risk anything else happening to me...

    In this GSH literature it explains how GSH plays a substantial role in the functioning of the bodys immune system, it's antioxidant properties make it vital to white blood cells (lymphocytes) of which mine are LOW...Also that Vit. C and selenium can be added to increase your GSH levels, so why not just do that and not take GSH?

    I also looked back and saw where some say to get your GSH levels tested, is this common?

    So here I am, debating what to do next that will ONLY benefit me, not hurt me...Can anyone help advise me or even just give me some hope on this path I am on? My new doc is just wonderful and is willing to try anything, even research different things for me, he allready has me impressed how much he cares just in 2 visits...

    I was beginning something with Dr. Farr (becomehealthynow) but got sidelined with a family death and happened to be at another doc who recommended this one...Strangely enough, the tests are now completely covered by my insurance so that part is significant for me...I may also call Dr. Farr again for further advice after all these tests come back...

    So all you lovely people, if you have the time and energy and would like to talk about any or all of the topics above, you know I would appreciate it...Just bear with me if it takes me time to reply or even acknowledge replies due to all my 'issues', I know you all understand.

    Peace to all~MamaDove P.S. Where is the best place to get GSH? Do I need a script too? I am reading much on GSH this evening and this is really making sense in my case...Many surgeries, major drugs, liver issues, major chronic stress...Just need dosage, where to get GSH or which supplements to increase and how to avoid a herx...Please help :)
    [This Message was Edited on 05/23/2008]
    [This Message was Edited on 05/24/2008]
    [This Message was Edited on 05/24/2008]
    [This Message was Edited on 05/28/2008]
  2. MamaDove

    MamaDove New Member

    Just bumping for others to see and hopefully reply...:)

    Thanks in advance~MamaDove
  3. DiamonDie

    DiamonDie New Member

    Great to hear you got a Rx for LDN. I've been on it for 1 year two months for progressive CFS/ME and it has helped me enormously. Should work even better for Crohns.

    AFAIK the best way to raise glutathione levels would be undenatured whey protein. Acetylcysteine, vitamin C and SAM-e can also help. Most doctors seem to think that oral glutathione has poor bioavailability and thus it's better to take these precursors.
  4. MamaDove

    MamaDove New Member

    Bumpity bump bump bump
  5. xchocoholic

    xchocoholic New Member

    If this was positive for gluten antibodies, which is what the celiac test is for, then you've probably found the root of your problems. Even if you aren't positive for celiac, if these numbers are high, you're gluten intolerant.

    Instead of doing so much at one time, I'd suggest you stick to the dietary changes and see what comes of it. It can take awhile to get these out of your system.

    Many people are finding by removing foods were are intolerant to our bodies will heal themselves.

    HTH .. marcia

    PS. I'd recommend googling gluten so you can see for yourself what it does to people ...

    [This Message was Edited on 05/24/2008]
  6. MamaDove

    MamaDove New Member

    Hi Marcia,

    Thanks for your reply...

    I have had two different tests for celiac...The recent one was IgA Endomysial and the result was 4...Lower than 19 is considered normal...

    I have also been following a form of the SCD and the Maker's Diet combined with adjustments here and there for the past year and have avoided gluten and the majority of wheat products anyway...Only eat sprouted grains (which I hope is good for me)

    I couldn't get out of my head what was said about 'just changing the diet has been helpful' and that I should wait on everything else...Makes sense...Today has only been a week since I started my elimination diet and on the ORDERS of my new proctologist, I began using psyllium...I was hesitant when he recommended it weeks ago due to the fact it comes in a package and I have this phobia about anything I eat being packaged...But as I always do, I sat quietly Friday night and heard him practically beg me to TRY IT...I started it yesterday and allready I have improvement in my stool forms and NO BLEEDING...People have been know to be cured from ulcerative colitis by just adding psyllium...I may be one of them...

    So today seems like it will be a good one for me...Having spent some time with friends yesterday and they asked about the steps I was taking since I got sick 18 months ago, saying I looked fantastic...I explained about my new dietary restrictions as they were guzzling down pepsi and talking about having bbq for dinner...They all said they couldn't live without beef, dairy and tomatoes and I just smiled and said "well I cannot LIVE WITH them"...It was a very powerful statement and it made me feel good to be able to sit there and say it...

    Hope this is the first day of my new life...Healthier and oh so much happier...Keep your fingers crossed for me... :)

    Again thatnks for your reply and concern re: celiac's, it has always been a concern of mine as well and I took measures just in case but still suffered...Now we may finally have the answer...Well at least one of them :)

  7. xchocoholic

    xchocoholic New Member

    I was thinking about this today. Have you added probiotics and digestive enzymes to your regime yet ? I've found that they help quite a bit.

    I take Digestive Gold by Enzymedica and buy probiotics from the refrigerated section of the HFS. I've never had a problem with kefir or goat yogurt so you might want to try those too.

    Also, I was wondering if you'd considered the Paleo diet. It's just meats, veggies and fruits, but what good about it is that it eliminates all the foods known to cause immune reactions.

    The Paleo diet might help you heal faster. I wish I'd done that from the start. Hindsight's 20/20.

    HTH .. Marcia
  8. MamaDove

    MamaDove New Member

    Hi again Marcia,

    My diet is so limited now that I have had the Sage food allergy tests done and am adhering to their recommendations, however, I think most grains (no matter how wholesome they are supposed to be) are problematic for all of us, but more for people like me...Sensitive...

    I have to go off all the supps I am taking now for the stool analysis test and then I am starting LDN next week...

    I will look into the Paleo diet and see how it compares to what I am doing now...It seems the CFS is rearing its ugly head once again and it's only the 10th day on the elimination diet...My goodness when does it end???

    Probiotics I have added in the past and never 'noticed' and improvement...I judge everything by BM's and there was no change, in fact, maybe a bit more problematic for me...I will look into the dig enzymes too and will ask my new doc about them...He is quite wise when it comes to CFS and fibro and he has been a great help in only 3 weeks since I started with him...

    I wish Rich would see my post and guide me on the GSH dose, my compounder is willing to make it for me but would like some direction also...Hoping he will see this soon :)

    Thanks so much for thinking of me Marcia...Peace~MamaDove
  9. xchocoholic

    xchocoholic New Member

    You sound just like me when I first went on this diet. It took me a long time to start feeling good.

    Your body is in detox mode from all the foods you stopped eating so it's going to take awhile for it to adjust.

    Keeping your bowels moving is critical. I hope the fiber is working for you. But, if not, try adding fresh papaya, mango or pineapple to your diet. They taste good too.

    And depending on what you added, your body has to learn to deal with that now ... I added too many nuts into my diet and started having kidney stones. YEOW !!

    I know how frustrating all of this is, but don't let it get you down. Just take your time ... This would all be so much easier if we grew up being told to watch out for food reactions.

    If you're eating any non GF sprouts then you need to give those up too. I stay away from the ones at the store and make my own. (When I'm in the mood to grow something anyways.)

    Hopefully, Rich will come along and answer your question. I have a question on the board for Rich too which is why I your thread caught my attention ... He's not here very often anymore, is he ?

    Peace to you too ... Marcia

    Edited to add : I forgot to ask you if you had the antigliadin antibody test results. From what I understand the endomy one you quoted is just for celiac not gluten.

    Those with gluten intolerance without celiac won't have a positive endomy ... and if you have positive gliadin antibodies you need to give up all gluten.

    [This Message was Edited on 05/28/2008]
  10. SnooZQ

    SnooZQ New Member

    Congratulations on your perserverance in finding a doc who is willing to test & treat outside of "the box" of big pharma meds. I envy your success.

    I am writing to you as someone with autoimmune diseases other than Crohn's. Over the past 4 decades, I've had many periods of sig. low WBCs, during autoimmune flares. This is a not uncommon feature in many autoimmune diseases. For my own understanding (which is admittedly incomplete), there are fairly complex reasons why neutropenia occurs in AID -- complex reasons which may extend beyond low GSH. In my experience, the neutropenia improves as the flare abates, and as it often does so without changes in diet or supp program -- ????

    I've had both good and difficult results from various supps over the years. One thing I've learned: it's best to introduce one new treatment modality at a time, give it a while to do it's job, evaluate effectiveness, then decide to stick with it/drop it/or continue monitoring for a while before making a decision.

    Another insight I've had: while those of us with autoimmune disease often also suffer from chronic fatigue, we may be a somewhat special subgroup within the CFS family. Meaning, we may, as a group or as individuals, not respond in the same way to treatment modalities that appear to be quite effective & side effect-free for the majority of CFS sufferers.

    LDN, as you've likely discovered through your own research, has a pretty good anecdotal track record with Crohn's disease. I've seen an abstract or two for studies with small patient groups & these also have been very encouraging. Although the response rate to LDN in Crohn's is not 100%, it is quite high.

    Please consider that, while there aren't a TON of studies on LDN for Crohn's disease, there are SOME. It would be interesting to compare, what is the published research (actual studies vs. theories/hypotheses) out there for GSH & Crohn's? -- Just something for you to ponder & look into, if you haven't already done so.

    If I were in your shoes, I would without a doubt jump onto the LDN trial bandwagon & give it my best shot, deferring GSH amp etc. until those results are in after a few months. You may find that the immune system healing resulting from the LDN improves a whole lot of things -- the Crohn's, the colitis, the blood counts, etc.

    If you have any desire to to try Rich van K's Simplified Methylation Protocol, please read all of his disclaimers & reactions people have encountered. It is NOT something I recommend for people with significant autoimmune disease, because of my own experience with it.

    I do hope Rich vanK will respond to your call. He is a scholar and a gentleman and will undoubtedly have some interesting thoughts for you to consider.

    Best wishes to you on your healing journey. I hope you will let us know how things work out!

  11. richvank

    richvank New Member

    Hi, mamadove.

    I've read your bio and your post (above). It looks as though you have a pretty complex case. I'm glad to hear that you have found a helpful doctor.

    As you may know, I am a researcher, not a licensed physician. I cannot give advice about individual treatment unless a physician is directly involved to evaluate my suggestions and to monitor a person while on treatment.

    I can, however, give some general comments.

    First, I don't know whether you do in fact have Crohn's disease or ulcerative colitis, but I can tell you that quite a few people have gotten relief from Crohn's disease and ulcerative colitis by using the treatments discovered by Dr. David Gregg, which are discussed on his website krysalis dot net (Click on the Crohn's section). Dr. Gregg is a friend of mine and I personally knew two of the people who benefited from his treatment, including the first one who tried it, so this is for real.

    Second, as you may know, I have suggested a "simplified treatment approach" for CFS. A summary of it is posted on this board, and is dated July 18, 2007. This treatment approach is designed to lift a block in the methylation cycle and to restore glutathione to normal levels.

    In order to determine whether a person has a methylation cycle block and glutathione depletion, and thus whether this treatment approach might be helpful, I think it is advisable to run the "methylation panel" that is offered by Vitamin Diagnostics, Inc. in New Jersey. A doctor's order is required, and the lab will send out a special kit for collection of the blood samples needed. I have heard that the cost is $300. The contact information for the lab is as follows:

    Vitamin Diagnostics, Inc.
    Rt. 35 & Industrial Drive
    Cliffwood Beach, NJ 07735
    Phone:+1 (732) 583-7773
    Fax: +1 (732) 583-7774)

    The lab director is Tapan Audhya, Ph.D. He is willing to help doctors with interpretation of the panel by phone, and he is usually in the lab on Tuesdays and Wednesdays from 1 to 3 p.m. EST.

    Alternatively, one can have a urine organic acids panel that includes both methylmalonate and formiminoglutamate (figlu) run. An example is the Metabolic Analysis Profile offered by Genova Diagnostics. This also requires a doctor's order. If methylmalonate and figlu are both elevated, this is good evidence that there is a partial block in the methylation cycle. There are also indirect indicators on this type of panel for glutathione depletion. Namely, low pyroglutamate indicates glutathione depletion, and often, elevated citrate in the presence of low values for the Krebs cycle metabolites that follow it is also found, and that is consistent with glutathione depletion as well.

    So far, I have seen results of the methylation panel from over 70 people with CFS. The majority show both glutathione depletion and methylation cycle block, though some show only one of these, and one or two show neither. Among CFS patients who have not been screened by testing, about two-thirds experience improvement with this treatment. There is a research study currently underway in the practice of Dr. Neil Nathan in Springfield, MO, from which we hope to learn more about which patients respond and which do not.

    You asked about building glutathione directly. I recommended that approach for several years, using various methods, including liposomal GSH forms as well as whey protein and many others, and it did help some of the people with CFS. You can find a tabulation of methods for building glutathione in an article I wrote a few years ago, which is posted on Cort Johnson's phoenix-cfs dot org site. However, in nearly all cases, it did not produce a cure, and if people stopped using it, they reverted back to their original status. I believe that the methylation cycle block is the more fundamental problem, and it holds glutathione down, so it must be tackled first. Some people report that adding glutathione boosting to this simplified treatment approach for lifting the methylation cycle block has been beneficial, while others report that they cannot tolerate it. I suspect that the differences are due to genetic differences between people, such as those characterized on Dr. Amy Yasko's nutrigenomics panel, available at holisticheal dot com.

    I don't think I've heard from anyone who has used LDN and glutathione building at the same time, so I don't have any experience to offer on that. You might check on the Yahoo LDN support group that is run by Dr. McCandless for autism. Some people there might have tried both.

    One doesn't need a prescription to get glutathione, other than injectable glutathione.

    I hope this information is helpful, and I wish you the best.