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My 5 STEP PROTOCOL for dealing with ME/CFS due to active EBV

Discussion in 'General Treatment' started by Iritu1021, Nov 20, 2014.

  1. Iritu1021

    Iritu1021

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    Now that all the necessary nutrients have been supplied, it was time to give my immune system a kick on the butt. How did I do that?

    - Low dose naltrexone therapy at night - jump starts your immune system.

    - Glutathione which you’re already using in Step 1 but it also acts as a potent antiviral / immune booster

    - High dose vitamin C. Either use the lipophilic form 1000 micrograms daily or more, or order it online and do injections 2-3 times a week. The oral high dose Vitamin C will upset your stomach and the injections are painful as hell - so pick your poison. I guess you can mix injections with lidocaine or apply ice to make it easier.

    STEP 3. Rest the nervous system (this should be happening simultaneously with STEP 2 or otherwise the program won't work)

    MAXIMIZE REST, AND YOUR NUTRITION AND HYDRATION!!! ENSURE SUFFICIENT AMOUNT OF DEEP UNINTERRUPTED SLEEP AND AVOID ALL STIMULANTS I put this in caps because I can’t stress this enough.

    I believe that healing of the body is meant to take place in the parasympathetic mode which is why our normal physical response to illness is minimizing energy and maximizing sleep (which we observe in children and animals but it has unfortunately become lost in frazzled modern homo sapiens species, contributing to rise in chronic infections).

    I take high dose lipid therapy (fish oil, krill, or primrose) to help repair neuron damage and decrease neuroinflammation.

    I also like transdermal magnesium oil. Magnesium has a stabilizing effect on nervous system and has good skin absorption.

    Let's talk about hormones for a moment.

    Personally, I found that most hormones made me feel better initially but then made me worse in the long run. I do believe now that hypothalamic dysfunction is a protective response of the body to sickness and will correct on its own once you’re better.

    I am against taking steroids even though my salivary tests were low. I simply didn't find them useful. When it comes to CSF the hormones seem to be not the chicken but the egg, however I believe there is one exception to that rule: pregnenolone. I find pregnenolone beneficial for the following reasons:
    - it decreases symptoms if PMS which usually aggravates symptoms of CFS for most women
    - it improves sleep (through progesterone production)
    - it gets converted to DHEA and cortisol but in safe quantities that your body can regulate on its own
    - pregnenolone and some of its metabolites act as neurosteroid and help to decrease central nervous system inflammation. (This may also be true for men but I’m not quite as sure about that, I suspect that men may derive similar benefit from testosterone).

    After several weeks of this immune boosting protocol, I began to experience a mild Herxing reaction as my immune system woke up and started to attack the virus with the new vigor. The symptoms included sore throat, congestion, myalgia, low grade fevers, overall flu-like symptoms.

    STEP 4 - ANTI-VIRAL THERAPY
    Now here's the kicker: once I've herxed for a bout a week, I added FAMVIR 250 -500 mg (dependent on your size) three times a day for 14 -21 days.

    "But wait", some of my savvy readers are probably saying at this point: "I heard that people have to stay on the antiviral therapy for years and that because of that it's very bad, and that some people do it and they don't get better..."

    All true but what is also true is the fact that most physicians are treating only some parts of CFS but they are not treating the whole spectrum as a disease. CFS is a very complex disease that requires a multisystemic comprehensive approach. My belief is you won't see improvements unless you treat all of the faulty parts simultaneously or in the proper sequential order. In other words, those doctors who focus only on the viral treatment are underestimating the role of the immune system in the recovery. The reason his patients have to stay on the therapy for years is because you can’t win the fight against the chronically dwelling virus without correcting the dysfunctional immune system that led you to becoming chronically infected in the first place and without correcting the major damage, toxicity and depletion brought on by the years of long standing infection.

    I also suspect that Herxing is often much more severe when you start with heavy guns like anti-virals that will release massive amounts of microbial toxins into your system, and my stepwise approach allows you to lower the viral load through the gentle immune system boost, then purge the rest with antivirals. Most likely antivirals will not clear the virus out of your body entirely but it will lower it enough for the infection to go back to the latent stage and as long as you keep optimizing the status of your immune system it will stay there.

    I would say that if I had to choose between boosting immune system and taking antivirals, the former is by far a more effective way to go. But the antivirals do help to speed up the process by tipping the battle in favor of your immune system, and Famvir (or other antiviral) taken over a short course has a safety profile that make it a worthwhile addition for most people.

    STEP 5. GET BETTER AND STAY ON STEPS 1-3


    Good luck to you all, I hope someone will find something useful in here.
     
    Last edited: Nov 21, 2014
  2. Gingergrrl

    Gingergrrl Senior Member

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    Dr. T, I read your post with great interest as my ME/CFS is from EBV, and I have done many of the things that you mention, and am taking Famvir. But I am too tired to reply in detail or ask questions right now so will save this for later!
     
  3. Snowdrop

    Snowdrop Rebel without a biscuit

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    @Iritu1021
    Hi Dr T

    Your protocol sounds interesting.
    Unfortunately parts sound expensive and some parts would be difficult to access for anyone living outside the US. There isn't a Dr anywhere where I live that would consider giving me an anti-viral.

    Though I can definitely do step 3:).
    How far along are you with the therapy?
    best regards
    SD
     
    Iritu1021 likes this.
  4. Gingergrrl

    Gingergrrl Senior Member

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    @Iritu1021

    I wanted to ask you some questions re: your protocol as I am also treating active EBV titers.

    I have been taking 400 mg per day of a good quality coQ10 (Ubiquinol by Jarrow) that is supposed to be a bio-available form. I was wondering how MitoQ is different or unique? I tried acetyl-l-carnitine a few times and it made me nauseous, agitated, and gave me insomnia even at very low dose. I was also wondering what specifically you are targeting with the Vit E from your research? Is it for cardiac issues or something else?

    Where do you find glutathione injections combined with ATP? I tried liposomal (liquid) glutathione for many months but never noticed any benefit from it (but nothing bad either.)

    I also did well with Methyl B-12 injections until I added the m-folate and then had a horrible over-methylation incident. Do you take m-folate as well? Right now I am not taking either but wish I was able to.

    I am curious in your medical perspective how this test is different than the other ones like NutrEval or Metametix, etc. I have not done any of them and would love to learn more.

    I was not aware of this and currently taking much more than 20 pills per day if you add everything up. This is another thing I will have to remember for the future.

    What dose do you take and did it give you insomnia? Was also curious if you take any other immune mods?

    I have tried three different kinds of fish & kill oil and my stomach cannot tolerate it and it gives me severe heartburn and pain. I am so impressed that you are able to tolerate all these treatments!

    I take half of the lowest dose of Armour Thyroid for Hashimoto's (7.5 mg per day) and this seems to work well for me and my thyroid numbers are now perfect.

    What is pregnenolone? I am not familiar with this one.

    I am taking 1500 mg of Famvir per day for a six month trial. I was curious what made you try such a low dose for such a short time?

    Thanks again for sharing your protocol and hope you don't mind all the questions! No rush to answer and please take your time.
     
    Iritu1021 likes this.
  5. Iritu1021

    Iritu1021

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    Gingergirl,


    I opted for MitoQ because of this intersting article I read online, here’s the link:

    http://www.science20.com/science_20/the_most_promising_antioxidant_you_never_heard_of-136215

    There is also some information about it on Wikipedia, so while the data is scarce I got a feeling that it was legit, and it’s 1000 times more potent than coenzymeQ.


    I don’t have strong evidence about taking any other antioxidants, the recommendation comes from most of the CFS gurus. I think that you can just get away with taking either MitoQ or Coenzyme Q and the rest of them (alpha lipoid acid, Vitamin E, acetyl-l-carnithine) will contribute very little to the overall effect. If you can splurge on a test that tests them (like micronutrient or antioxidant analysis), then you should only target those that are above the ideal range. Ideally, you want to push all your antioxidants into the upper one third level because there is so much of “ toxic radical clean up” that CFS cells require - however, I think if you were to go with only two than glutathione and MitoQ/regular CoQ seem to be the two most supported by literature and may be enough.


    I buy glutathione/ATP injections from my CFS physician Dr. Patricial Salvato in Houston. They are $10/syringe. However, most compounding pharmacies will make these for you with a prescription. There is also a website from some chiropractor that sells nebulized glutathione, glutathione spray and glutathione suppositories and I don’t think they require prescription. Finally, there are some other ways to raise glutathione endogenously: through dietary sources, increased sulfur intake or Immunocal whey protein. I think that oral glutathione, even in liposomal form, is a waste of money. It simply doesn’t get absorbed.


    I do not take any additional folate other than what’s in diet or regular multivitamin. My blood work showed that I already have high levels of folate and I tested negative for MTHFR. I’m curious what where your symptoms of overmethylation like?


    NutrEval/Metametrix vs Spectracell. NutrEval is much more comprehensive and it focuses more on the actual cellular metabolism. It’s a complicated test, requires both blood and urine, very specific handling, pre-test preparation and costs about $1000 (unless you’re lucky to have one of the few progressive medical insurances that covers). I haven’t done it yet but I’m planning to do it in the near future. Spectacle on other hand is a quick blood draw, you can do it in any AnyLabTest without a doctor’s order, it simply shows how your lymphocyte react to addition of various nutrients, and based on that they determine deficiency. It costs $350-400 so it’s easier and more affordable. It won’t give you as much in depth information as NutrEval but it may be a good place to start with if you’re just looking into your nutritional status rather than specific disorders of methylation, oxidation, etc.


    College Pharmacy has MicroTabs program for custom made vitamins. I have yet to try it myself so I can let you know how it works out.


    Low dose naltrexone. I take 4 mg. It only gave me insomnia for the first 2-3 nights, now I don’t really notice any side effects from it but I do take meds in the evening that help me sleep anyway. That’s the only immunomodulant I’m taking right now.


    As for lipids - maybe you can just take something in natural (food) form? For example, just adding real flex seeds to your yogurt or eat raw coconut or fatty salmon? You probably absorb more from food than from supplements any way.


    I have Hashimoto’s too and my TSH was borderline. Armor was the drug that put me in bed for three months, it wrecked total havoc on my body but that’s because of my heart issues. If you don’t have problems with your heart rate than it’s fine. I really wish I could take it though. When I was taking it, initially I felt fantastic and looked so much better. I know that my whole body needs thyroid, but unfortunately it’s just the heart that can’t tolerate it. I hope to be able to take it again one day.


    Pregnenolone is a “mother hormone” produced in your adrenals. It acts as a precursor to most of the other hormones produced in adrenal glands anad also is thought to have some important brain functions on it own. You can ask your doctor for test to see if its low. It’s sold over the counter.


    As for FAMVIR - that’s where I’m really making an educated guess and its just an assumption. A lot of physicians who treat CFS, including mine, don’t think that antivirals are necessary and that it’s the immune system dysfunction that is the answer, not antiviral treatment. I’m using the dose and duration that would be recommended to a healthy non-CFS person. Assuming, that the previous four steps have corrected your immune system dysfunction, you only use Famvir to help quickly decrease the viral load, but you don’t need to use it for keeping the virus suppressed because your immune system is now primed again to do its job.


    Hope that helps!
     
    Gingergrrl likes this.
  6. knackers323

    knackers323 Senior Member

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    Do glutathione injections require a prescription?

    Has anyone tried any if the other forms?

    I've tried the oral liposomal and didn't notice anything
     
  7. Gingergrrl

    Gingergrrl Senior Member

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    @Iritu1021 I just saw your response and didn't realize it was there! Thank you for all the info and I will read it in detail and reply tomorrow.
     
  8. Iritu1021

    Iritu1021

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    Gingergrrl, I'm really not sure how much role glutathione played for me. I've had normal glutathione levels when I tested with Spectracell. The only reason I used it is because the physician I'm using really pushes for it (she did a small study on glutathione in CFS years ago). I know that in many people it's low, which is why we all respond to different things and I think the best protocol is the one based on your own labs. I did find hydroxycobalamin injections very useful though for the brain fog. I don't know if it's nitrate scavenging or methylation or what the claimed mechanism is but it seems to be one of those things that just seems to work in ME/CFS most consistently, and naltrexone does seem to be effective in stimulating immune system.
    I also have pretty bad POTS due to Ehlers-Danlos syndrome, so I think part of why I have chronic EBV is that I just don't get good blood circulation to my head when I'm in the upright position...
     
  9. Iritu1021

    Iritu1021

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    They do need to be compounded by prescription but there is one place online that sells without prescription in nebulized or suppository form. You will find it if you google it.
     
  10. cigana

    cigana Senior Member

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    What dose of the Mitoq are you taking?
     
  11. Iritu1021

    Iritu1021

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    I take 5 mg. I have to add that I've now made significant progress with diagnosing my problems, and now I know that my CFS is only partially due to chronic EBV but the root cause is Ehlers Danlos (collagen defect resulting in overstretchy connective tissue), Chiari malformation and POTS + pelvic congestion syndrome . Vitamin C helps with EDS and B12 expands blood volume and removes toxins in impaired circulation. I'm not sure how important MitoQ was in this protocol although an extraoxidant boost can never hurt. I also take midodrine which constricts my blood vessels and had pelvic vein embolization. My guess is that at least 25% of people on this site have what I have but are chasing the wrong explanation and red herrings like EBV - which is just another complication of poor blood perfusion and that's why it doesn't respond well to treatment.
    Hope this helps!
     

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