The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Sick but never sick

Discussion in 'General ME/CFS Discussion' started by digital dog, Aug 24, 2015.

  1. digital dog

    digital dog Senior Member

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    Thank you Raines. I read that some people get anxiety with LDN. That is a big no-go for me. I never used to get anxiety but a week on fish oil started off a two year nightmare which I am still trying to recover from. I know most people do very well on fish oil and I am well aware how beneficial it is meant to be but for me it nearly killed me. I suppose my reaction to that makes me VERY nervous in trying anything else. It does seem easy to get hold of and not expensive though.

    Brenda, going gluten free certainly lowered your antibodies. That must have been very encouraging. Please do try and let me know your recent results when you have them. I know here in the UK we don't get tested often enough. Did you get any more benefits from going gluten free?

    Raines, I can get more energy from all kinds of supplements and drugs, the problem is energy for me comes with insomnia and/or anxiety. I would rather be fatigued than have these. I haven't specifically tried tyrosine but I think it would do the same. My body is not balanced and it swings very easily. Hence being diagnosed with bipolar...which I DO NOT HAVE.

    I think I will stay away from LDN but tomorrow I could feel differently. For all I know, I could be on it in a week :):aghhh::):aghhh:

    Scary stuff.

    X
     
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  2. brenda

    brenda Senior Member

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    DD

    My new GP won't test my antibodies so l don't plan on knowing how they are going but yes a huge improvement on gluten free but it took a while to get it out completely as l kept making assumptions which proved false. I used to get skin rashes and they stopped and improvements all round.

    I suffer badly from anxiety so am keeping tyrosine at 100 gms for now. It affected my sleep for a few days then settled.
     
  3. worldbackwards

    worldbackwards A unique snowflake

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    Lots of colds in the first couple of years, once it got very bad next to nothing. Started having the odd one once I started picking up, but I'm better than I've been for ages now and I don't think I've had one for three years.

    No real pattern except much less. Though it could be that I see very few people and don't really go anywhere.
     
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  4. Gijs

    Gijs Senior Member

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    I don't get the flu anymore for almost 20 years now. It looks like some patiënts have more Hashimoto and others Graves disease (hyper). Another reason can be that most patiënt are housebound and don't have many contacts with other people anymore so the change you get the flu is significant limited. I think it is interesting to find out why some patiënts feel better if they have a real flu.
     
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  5. dannybex

    dannybex Senior Member

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    I'm not a scientist, but I'm not sure it's a matter of 'either or' -- depleted or overactive -- although I supposed it could be depleted because it was overactive for too long. But it would be nice if one could find studies to back up these things.

    It's my understanding that lactoferrin modulates the immune system, and helps keep iron from being used by viruses, bacteria, etc.?
     
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  6. JaimeS

    JaimeS Senior Member

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    @dannybex - Lactoferrin activates macrophages :

    http://onlinelibrary.wiley.com/doi/10.1080/15216549700203841/pdf

    http://www.ncbi.nlm.nih.gov/pubmed/17034774

    http://www.sciencedirect.com/science/article/pii/S1567576904001559

    etc, etc

    GcMAF also activates macrophages. So the question becomes, would we like to activate macrophages or quiet them, as LDN promises to do?:

    (From: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/)

    -J
     
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  7. alkt

    alkt Senior Member

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    my illness started with a flue fever for 13 days most off which i have no memories of a chronic high fever is not something i would want to go through again. bad enough with low grade fever p e m.
     
  8. snowathlete

    snowathlete

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    They last several days while I have the stomach bug and end along with the bug, once I've overcome it. Really the same as when I was well and caught one but more intense and a higher fever. Having that as well as ME/CFS was awful, hard to bear. It was the only time in my adult life that the GP has had to come see me rather than the other way round.
     
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  9. snowathlete

    snowathlete

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    Thats great, thanks for sharing. The only pain i get is from severe fatigue/weakness and i dont have fibro. But it sounds like it is still worth me trying it out. I really hope that you see sustained improvement with it.
     
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  10. SDSue

    SDSue Southeast

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    Ditto.

    Not sure my immune system was ever great - even as a kid, I NEVER got sick. It was the family joke.
     
    alkt likes this.
  11. dannybex

    dannybex Senior Member

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    I guess it would depend on the patient and which way their immune system is tilted. Perhaps if one has a bad or non-existent reaction to LDN, then lactoferrin might be worth a try. It was my understanding that in general ME/CFS patients have low white blood cell counts, so not sure if lactoferrin activating macrophages would be a problem.

    But I'm not a doctor, not barely even a functioning nitwit. :)
     
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  12. JaimeS

    JaimeS Senior Member

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    !!!!

    This makes you better than a doctor, who can't admit the same. ;)

    I'm just confused at the apparent dichotomy. Apparently, people are helped by things that activate macrophages and by things that calm them down. How could this both be true?

    It may be that it's two separate groups who are helped, but perhaps there's a model where both make sense.

    If you have a chronic infection, killing it off would make you feel worse at first, but eventually better. If you have a chronic infection, calming your immune system for a second might make you feel better in general, or get you to stop attacking your own tissues. Perhaps it's a good thing in either direction... for everyone.

    It would make an interesting study.

    * Start with a large patient cohort, MS or ME or both.
    * Assign randomly to LDN, GcMAF, or control group.
    * At four months, if a patient in the LDN group hasn't been helped by LDN, switch them to GcMAF and vice-versa. (Consider publishing as a second study rather than all together?)
    * At one year, publish findings.

    Now, where's the several million I'd need to make this happen? ;)

    -J
     
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  13. jimells

    jimells Senior Member

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    This seems to be my experience. In the past six years I have had two or three "four-hour colds". I wake up with my nose running like an open faucet, etc. Then by noon it's completely gone. It's a very odd experience.
     
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  14. jimells

    jimells Senior Member

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    Well, not to me, but it did make me laugh, so thanks for that! :thumbsup:
     
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  15. jimells

    jimells Senior Member

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    I react badly to SSRIs after a few weeks. Cymbalta nearly killed me (SNRI, I think) by causing a hypertensive crisis and an unbearable icepick headache.

    But six months of LDN did nothing for me, good or bad, so I gave it up.
     
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  16. jimells

    jimells Senior Member

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    With all the reports of Hashimoto disease on this thread I thought, just how many of us have this disease? It seems like something the CDC must have researched. Apparently no one in the entire research field has ever asked this question. I can find nothing on Pubmed.

    Although I did find it interesting to know that Hashimoto is still publishing, and in 2007 he (she?) published a paper titled, "History of Chronic Fatigue Syndrome" with plans to develop yet another criteria. Too bad it's in Japanese.
     
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  17. Wayne

    Wayne Senior Member

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    Hi @dannybex,

    That may be so (I doubt it however :)), but since most doctors get virtually no in-depth training in immunology, you may fare better in comparison with them than you think!
     
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  18. JPV

    JPV ɹǝqɯǝɯ ɹoıuǝs

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    This is very similar to my experience. For the first 5 or so years after coming down with ME/CFS I used to get colds and flus quite frequently. In the last 15 years it's been very rare for me to ever get sick.
     
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  19. JPV

    JPV ɹǝqɯǝɯ ɹoıuǝs

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    Maija Haavisto, who's a big proponent of using LDN to treat ME/CFS, seems to have gotten good results using Piracetam to alleviate her cognitive issues...
     
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  20. Sidereal

    Sidereal Senior Member

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    I've had experiences of this sort too. Sometimes I feel like a major cold is coming on and I think wow, I'm finally getting a normal infection. 2-4 hours later it's gone.
     
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