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Any advice?

Discussion in 'General ME/CFS Discussion' started by burgeo10, Jun 1, 2014.

  1. burgeo10

    burgeo10

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    Hi,

    Have friend the forums for ages, but am a new member so please go easy on me... I'm basically looking for some help and to see if I can help anyone else. I'll give you some info about me and my illness history...

    I'm currently 19 years old and have had chronic fatigue for six years. Emerged first as a strong virus (though believe i was suffering mildly and not obviously beforehand for a year), after which I suffered from mild fatigue and recurring illness, and had to reduce my schooling schedule significantly.

    Through the rest of my high school career I continued with the advice from my doctor, to pace myself, and gradually I built up so that I attended school 75% of the time, and was rarely ill.

    By the time I was 17 I was almost normal again. I was then hit by another hard virus, which set me back a little but not majorly. However i seemed to regress a little over the following year and a half, short relapses were more common (body aches, headaches), but my fatigue was fairly normal. I have a theory that the worsening of the condition from that point onwards was due to my introduction to alcohol at that point, and my occasional consumption of it.

    However I lived a fairly normal and good life until last summer where I suffered a major relapse whilst trying to push through a summer internship. Felt ill for a week just like I had when I was 13, with major body ache and lower back pain. This then resulted in much more frequent relapses throughout the summer, though I tried to ignore it and push through the pain.

    Last fall I started college, and with consideration from some doctors and having done the lightning process six months earlier, I tried to pretend I was normal. This meant I studied as normal and socialised as normal, which began okay ( though my hangovers were 10x as bad as others) until about 2 months ago. I stopped drinking because my hangovers became so bad, sometimes lasting as much as two weeks, and decided to be serious about my illness.

    I stopped going clubbing at all, and tried to live a more regimented lifestlye, until a month ago I suffered a mini relapse which was fairly normal, but the day I felt better, by the evening I had an over-whelming sense of tiredness like never before. I tried to pass it off as lack of food, and it continued worsening till the end of the week when I suffered a mini crash but recovered within two days.

    For 2 weeks I then felt fine and was being relatively active, but avoiding late nights and alcohol, until another relapse last week. After this relapse I returned as normal to studying but then felt the terrible feeling of tiredness again. I have now felt overwhelmingly tired and achey (body and head) for a week now, and the severe fatigue is something I have never suffered from.

    I am worried that I have suffered a severe relapse and am not sure what to do. I spend all day on the sofa, bar a short walk, and dont feel I have the energy to do anything else. I have pondered whether my trial of d-ribose during the last month but have some relationship to it, but i fear it is more likely to be something else as both times the crashes have been post mini relapse

    Anyway, I would love to know if anyone has any advice? or questions or anything basically that might help me or you. Would also love to know if anyone has a good doctor in London? as my cfs doctor has only ever advised pacing, which seems to only work so far... Had blood tests on friday and will get the results soon so am hoping they will help.

    Thanks,

    Tom :)
    Last edited: Jun 1, 2014
    rosie26 likes this.
  2. rosie26

    rosie26 Senior Member

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    Hello Tom and welcome :D

    Would you be able to use the edit button and make paragraphs of 3-4 lines each. The huge block style writing is way to hard to read for a lot of us and we end up not reading at all :)
    minkeygirl likes this.
  3. burgeo10

    burgeo10

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    done!!

    Sorry :)
    rosie26 likes this.
  4. minkeygirl

    minkeygirl Senior Member

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    I still need more paragraphs. Every 3 or 4 lines. It doesn't have to make sense, I just need more white. Just one space please. Breaking up the middle 3 paragraphs more would help.
  5. Allyson

    Allyson *****

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    HI tom.
    My advice would be to get a tilt table test done for POTS - tat is very common ME sypmtom

    then I would want to ruel out LYme disease and EDS - Ehlers - Danlos syndrome both are very similar to ME but can be treated/managed.

    here is a link with more symptoms and info on EDS - good luck with it

    and some management strategies if you read through it


    http://forum.notcrazy.net/index.php?topic=9571.0


    Ally
    rosie26 likes this.
  6. burgeo10

    burgeo10

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    Thanks alot Ally, very kind of you. I will look into these things with my GP. Have been checked many times for Lyme and been negative, looking through my blood tests my calcium and albumin are always high, and my random blood glucose is always slightly less than 4 so maybe thats somewhere to start. My TSH is also always sub 1 so will check that out. Hopefully will lead to something.

    Thanks,
    Tom
    Allyson likes this.
  7. MikeJackmin

    MikeJackmin

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  8. Esther12

    Esther12 Senior Member

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    Sorry to hear about your troubles Tom. I'm wary to give advice as it's so easy to lead people astray, and I think that it's quite likely that we all respond to lots of things in different ways.

    I can see it being really confusing with you often being towards the edge of normal, wanting to make the most of that, and finding it difficult to gain any social consideration for your health problems (probably hard to get schools to make allowances for your desire to go out drinking and dancing! - but a perfectly legitimate desire imo). There are some alternative diagnoses it could be worth checking out that were mentioned above, but it's also possible that good management will mean that you have a mild form of CFS without really recovering and being able to do similar amount to that which healthy people can.

    If I were you, I would play about and see what works best for you. I don't think it's a good idea to try to push yourself to recover, but I also don't think it's a good idea to try to be really regimented with rest and activity. But I've heard others say differently for themselves. Hopefully you're just having a bit of a funny blip at the moment, and it's something you'll naturally improve from.

    Best of luck with it all, and with being kind to yourself about everything. Sounds like a really confusing thing to go through on top of being a teenager.

    (All advice is given by a random person on an internet forum, and should be given no more than a moments consideration).
  9. minkeygirl

    minkeygirl Senior Member

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    Thanks for the paragraphs. I agree with @Esther12. Pushing through after a crash is not a good idea. One of the first things I heard after getting sick was to only do 50% of what you think you can do.

    One of the biggest mistakes we make is Push/Crash. Push too hard then we crash.
  10. burgeo10

    burgeo10

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    Thanks alot for the advice, I'm trying to stay positive even though its quite scary atm! Am very interested in the methylation cycle and did my 23andme testing a while ago and only looked at the mutations today. Am still confused as to what they mean, but if anyone understands it would be great to know what you think? otherwise i'll keep on researching...

    here's the link to my results https://geneticgenie.org/methylation-results

    thanks
  11. Esther12

    Esther12 Senior Member

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    I think that there are a lot of experimental things floating around CFS that don't have a good evidence base and, if I were you, I would not spend time and money on at the moment. I really wish that there was something I could confidently suggest would be useful, but in some ways, it sounds as if you've had a reasonable handle on managing your symptoms in the past, and then just had a couple of mishaps along them way. My hope would be that as you get back to the approaches you found most helpful for yourself, you'll naturally improve to the point you were at previously.

    The more experimental stuff could just end up distracting you from that and doing more harm than good. At the moment, I'd focus on adapting the approaches you found most helpful in the past to your currently more severe symptoms, and see how that goes, along with considering some of the 'mainstream' alternative diagnoses mentioned above.
  12. SDSue

    SDSue Florida

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    Welcome, Tom.

    Best advice I got, which I of course ignored, was to list my top 10 priorities and then cross off the bottom 5. I didn't, because "I can't - you don't understand!" so this disease progressed and I no longer had a choice. Now I'm down to my top 2.

    Anyway, pace, pace, pace, and then pace some more. Your body needs strength to heal, and if you use all your strength in other ways, you'll probably be sorry. I wish you the best.

    Ally, I'd sure love to know how EDS can be treated/managed? Are you referring to treating the dysautonomia/POTS? Thanks so much.
    MikeJackmin and Allyson like this.
  13. minkeygirl

    minkeygirl Senior Member

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    I have to disagree with Esther12. This is a progressive disease. You have to be proactive and somewhat aggressive to get the upper hand in things. The people who did that, who attacked this from the beginning are among those who are doing a bit better. And pretty much all treatments we try are experimental.

    Along with methylation it would help if you found out if you have any viruses or infections. Once you know that you can move forward.

    You can't assume what you did in the past will keep on working to the same degree in the future. Just my opinion.
    Misfit Toy and SDSue like this.
  14. Esther12

    Esther12 Senior Member

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    I've got to disagree in turn... or at least say that we don't know. Some people seem to improve over time (lots of people of those who are only ill briefly). There's just so much that we don't know that it's all to easy to get sucked into worthless/harmful interventions. Having said that, I'm not aware of any good evidence either way as to whether being more proactive with experimental interventions is associated with better/worse outcomes.
  15. caledonia

    caledonia

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    Can you repost your methylation results, they're not showing up. You might be able to copy and paste the results, or do a screen capture, and post the file.

    My #1 suggestion would be to practice pacing no matter what you may have. And no alcohol, as it further depletes B vitamins and glutathione in the liver, both of which would make any methylation issues worse.

    Tag me with @caledonia so I will get an alert for your post.
  16. minkeygirl

    minkeygirl Senior Member

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    I think those that got better caught it early and did everything they could. If I knew 20 years ago what I know now? Who knows?
    Nielk and SDSue like this.
  17. burgeo10

    burgeo10

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    @caledonia, ive attached the file so you should be able to see it now! Again thanks for the advice from all others. I've go too agree with @minkeygirl, with the earlier you catch it, the more success you are likely to have

    Attached Files:

  18. SOC

    SOC Moderator and Senior Member

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    I don't think there is a good medically-based ME/CFS physician in the UK. My best suggestion is to go see Dr Kenny DeMeirler in Brussels, Belgium. You can search Phoenix Rising for more information. Patients often abbreviate his name as KDM in posts, so you'll want to search on that, too.

    My daughter got sick at 12yo also. She stayed mostly in remission until 17yo when she had a bad crash. With the help of aggressive medical treatment she battled back to remission. She had another relapse this year, but is almost back in remission again. She's currently 22yo, in graduate school, and planning to get married next summer. She would not be where she is today without that aggressive medical treatment.
    justy and Nielk like this.
  19. Allyson

    Allyson *****

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    SD SUE have read through this thread and see how it resonates then get back to me with any questions - I find I feel well most of the time now - tho I can't do much -t least I don't feel dreadfully ill so much either

    andsome people respond well to POS meds / IV therapy and so get a bit of a life back

    good luck

    http://forum.notcrazy.net/index.php?topic=9571.0

    ALly
  20. caledonia

    caledonia

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    Folate (MTHFR) is good. There are some problems with B12 recycling (MTRR). Lots of mutations with BHMT, the secondary methylation cycle. An SHMT which might cause gut problems. I've never seen such bad AHCY mutations, but I'm not sure what, if anything, could be done about them. Yasko says that if you balance the rest of the cycle, AHCY should balance on it's own.

    With CBS C699T, A360A and all the BHMTs, CBS could be an issue.

    COMT is cut off, can you post that - I would need to know that to tell you what type of B12 is suggested.

    Can you also post your detox SNPs?
    Allyson likes this.

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