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Another relapse, another chest cold, another vitamin deficiency...

Discussion in 'General ME/CFS Discussion' started by Antares in NYC, Dec 9, 2013.

  1. Antares in NYC

    Antares in NYC Senior Member

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    Over the last few months I've been working like mad, starting to pay off some of the medical bills I've been drowning in. I continue fighting with my insurance, as they randomly deny coverage of even common tests and procedures; they just denied covering my last colonoscopy, sticking me with another $3,400 bill. Some days I come home and all I want to do is scream, but I'm so extremely tired I just plummet in bed. I'm truly caught in a hamster's wheel.
    And they denied Valcyte yet once again.

    I had another relapse with a major chest cold, the third one this year alone. At least it didn't turn into a pneumonia yet, as it did last winter. Zero energy, five days in bed like a complete zombie.

    Recent tests show that none of my titres have come down at all, and furthermore, another vitamin and mineral deficiency has been added to the roster: Zinc. With this, now I have tested deficient for B12, C, D, Magnesium, and now Zinc. Why do so many of us get such dramatic vitamin deficiencies? What does it mean?
     
    Last edited: Dec 9, 2013
    Allyson likes this.
  2. Allyson

    Allyson *****

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    possibly gut malabsorption issues

    I like B 12 shots and regular vitamin c to stave off infections - ACES

    cheers

    Ally
     
    Beyond likes this.
  3. SickOfSickness

    SickOfSickness Senior Member

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    Maybe too much folic acid in your diet. It is added to most bread, rice, some healthy beverages, etc.
     
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Zinc is also needed for neutrophils which could be increase risks of chest infections?
    Have u tried other antivirals and does your insurance cover them.
    I don't really understand the health system there but is it possible to change health insurance companies?
     
  5. Antares in NYC

    Antares in NYC Senior Member

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    I have had three colonoscopies since the vitamin deficiencies started to manifest in 2009, with inconclusive results. First it was vitamin D and Magnesium, and every year another vitamin or mineral has been added to the list. I take supplements and inject B12 and magnesium twice weekly.

    As for the awful chest colds, they have been increasing in frequency. I have had pneumonia in 2010 and 2012, and bronchitis this past summer and now, this week too. Granted, my NK function is disturbingly low. I'm started to get very worried that my health is plummeting down in recent years... My CFS symptoms were stable for a number of years, but in recent times everything seems to be deteriorating fast. I'm definitely worried.
     
  6. Antares in NYC

    Antares in NYC Senior Member

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    The only antiviral that my insurance covers is Famvir. Since the summer I have been on 1500mg daily (three 500mg tabs per day). That's the maximum my insurance would cover, and they deny Valcyte at every turn. They even denied coverage for methylfolate!
     
    heapsreal likes this.
  7. vamah

    vamah Senior Member

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    I'm wondering what your doctor is putting as the reason for valcyte. If he/she is saying it is for cfs it is more likely to be denied than if he says it is for hhv6 or cmv. I can't remember, did you test positive for either of those?

    I'm sorry about your situation. It really sucks. I was holding my breath a few months back waiting to see if my new insurance would approve valcyte. Fortunately they did.
     
    Antares in NYC likes this.
  8. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    I also think is malabsorption and I have been found defficient in like 16 vitamins and minerals. Furthermore, I think chronic inflammation/illness also depletes the body reserves of nutrients AND its capacity to hold them.
     
    Antares in NYC and justy like this.
  9. Marco

    Marco Old blackguard

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    I've been reading up on leaky gut recently.

    Not only might leaky gut be contributing to malabsorption but LPS translocation causes systemic inflammation which can then prime/activate microglia in the brain. Primed microglia (as seen in the elderly) causes an enhanced sickness response to even trivial common bugs which is why the elderly have such a decline (often cognitive) after common infections.

    Some suggested cheap and cheerful remedies are zinc, N-acteylycysteine and oats! Maybe worth a try?

    I also have to ask - are you 100% convinced that you need the anti-virals? I doubt they're easy on your system generally and you might consider taking a break from them for a while and see what happens?.

    BTW - commiserations. Nothing worse than having to keep plugging away at work while at such a low ebb but do try to stick it out. Things might improve.
     
    Antares in NYC, Beyond and justy like this.
  10. Antares in NYC

    Antares in NYC Senior Member

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    I was just told I have pneumonia again. Second time this year, in addition to bronchitis this summer. This is so unfair. I'm sure my depleted NK function has something to do with it. I hate this disease. This is a living nightmare.
     
  11. Antares in NYC

    Antares in NYC Senior Member

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    Hi Marco,

    I have been told about possible leaky gut before. Since the vitamin/mineral deficiencies started a few years ago, alongside ibs symptoms, I have had three colonoscopies with normal results.

    Is leaky gut a symptom of CFS? Do other ME/CFS patients get these many deficiencies or malabsorption? I wonder what could be the cause for this. I find your comment about active microglia of the brain extremely interesting, since a lot of my pernicious cognitive issues could be explained by that. Any tests that could detect if this is happening? I'm really afraid of getting a brain MRI, though. I'm aware that ME/CFS causes brain damage in some people, and it terrifies me. I'm afraid to go there, frankly.
     
    Beyond likes this.
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Can i ask what your neutrophil count is?
    I ask this as low neutrophils makes one prone to bacterial infections which possibly causing your chest infection. Sounds like to me u need a long course of antibiotics to knock it??
     
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Have u looked into a myers cocktail, its an iv infusion with different vitamin and minerals.
     
  14. Antares in NYC

    Antares in NYC Senior Member

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    Not sure about my neutrophils; I will ask my doctor and see.
    I'm not familiar with the Myers cocktail, but because of my vitamin deficiencies, I take lots of supplements daily, including methylfolate, CoQ10, you name it. Roughly 12 capsules daily. I also get injections of B12 and magnesium twice weekly. Still showing new deficiencies with every test. Crazy.

    Also, I started methylation in July, and to this date I have not noticed any improvement with the awful brain fog. This thing is relentless.
     
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Getting the myers cocktail IV bypasses any issues u may have absorbing them orally. Doctors can add certain things to it that u may need like say extra magnesium etc etc
     
    Beyond likes this.
  16. Marco

    Marco Old blackguard

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    Hi Antares

    GI symptoms are common in ME/CFS - not in all but a substantial proportion. Its perhaps my longest lasting and most consistent symptom. I had a full upper and lower GI workup including gastroscopy and colonoscopy some 25 years ago now and while they found fat malabsorption they couldn't work out why and put it down as 'idiopathic'?

    As far as I'm aware there are lots of scientific papers on 'leaky gut' in relation to many conditions but it doesn't appear to be accepted as yet in the scientific mainstream. At least one theorist suggests it may underlie ME/CFS :

    http://www.nutritionandmetabolism.com/content/7/1/79

    and may impact on mood and cognition (a complementary medicine summary - might want to check the references yourself ) :

    http://arizonaadvancedmedicine.com/strengthening-the-gi-tract-to-enhance-cognitive-health/

    I doubt there are any reliable tests outside of research labs but I could be wrong.

    I do get get the sense that you're looking for some diagnostic certainty but at the same time you're using (expensive) treatment based on hypothetical disease mechanisms underlying ME/CFS.

    'Leaky gut' may also be hypothetical with respect to ME/CFS but at least the suggested treatments seem to be perfectly safe and cost next to nothing. Hence I thought it was worth a try.
     
  17. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    I have fat malabsorption too, after much reading it is the hallmark of overalll malabsorption, or the easiest to spot by allopaths.

    IMO my "leaky gut" is secondary to severe adrenal and mild thyroid problems. I had symptoms and test results of these way before any gastrointestinal discomfort. For example, without proper cortisol you will get worse digestion and eventually autoimmunity and chronic inflammation. Although treating directly the gut brings temporal relief. For that the best that I have found in propolis. I also take raw aloe but it doesn´t seem that helpful. The diet is mildy helpful. I go by intestinal discomfort and face eczema to know how my leaky gut is doing. They are pretty good right now but is a pain how careful I need to be with eating etc
     
  18. xrunner

    xrunner Senior Member

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    I used to be deficient in most nutrients, all the key ones for mitochondrial health like q10, magnesium, fatty acids and zinc, selenium, chromium, biotin, glutathione, some B's and others I don't remember. I did not suffered from leaky gut.
    I spent almost a couple of years on replenishing protocols including myhill, methylation, myers, kane, with both oral supplementation and iv infusions. It was pretty much a waste of effort and money.

    With hindsight my own interpretation of these deficiencies is that they may have been caused by "holes" in my system. If you run a car with holes in the tank, you can try and fill it up as much as you like but it won't retain much.
    The "holes" in my opinion were caused by infections, immune activation and inflammation which either ate up a lot of nutrients or prevented their absorption.
    I'll add one more personal consideration. I suspect that pumping nutrients into a body that is suffering under active infections may even be counterproductive. I did in fact got worse under the protocols I mentioned earlier (some doctors mention among the reasons biofilm formation and acceleration of pathogens replication).

    It was only after I resolved the infections that the whole nutrients picture started to reverse back to more normal.
    Once you get there, you won't need most supplements any longer as a good diet will cover most needs (may be a few exceptions).

    If you deal with your infections you can only get better but you can't cure chest infections with minerals and vitamins.
    Hope you get better.

    PS: You may want to see another doctor, somebody who's familiar with chronic infections (like a LLMD) for a second opinion.
     
    Last edited: Dec 12, 2013
  19. Aerose91

    Aerose91 Senior Member

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    There is also a Valcyte fund that will help cover expenses for those who are on Valcyte, but ONLY those who are on it for a "conventional" reason. HHV-6 and CFS are not considered standard uses so your insurance will surely deny it. Your doctor would HAVE to put CMV as a reason for them to even look.

    Antares, I know your pain, I have not found anyone on this board whose brain is as bad as mine and I took Valcyte for 6 months with no improvement. LDN is known to shut off mycroglia activation and is only about $40/month. Also much easier for a doctor to prescribe.
     

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