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I consider myself back to normal

Discussion in 'General ME/CFS Discussion' started by jess100, Nov 11, 2016.

  1. jess100

    jess100 Senior Member

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    HI everyone,
    I want to give an update because I'm well. It would be really great if I wasn't attacked for saying that I'm well.

    I went to OMI and saw Kaufman in 4/2015 (I had to read my email to find that date-it's all a blur). He was very thorough and found Babesiosis and Anaplasmosis as well as very high EBV, several other active viruses (I think 5) and very low Natural Killer cells and vitamin D, and SIBO along with methylation problems.

    I still am not convinced I had SIBO, but I treated it with herbs and then got a poorly run test at a local hospital who declared me clear. (that's what you get locally....they still don't know much about tick borne illnesses here although they are endemic) So for now I'm letting that go.

    I was given Famciclovir which I'm still taking, and other drugs which I didn't take. Some were for the SIBO so I didn't take them (opting instead for the herbs) and others sounded dangerous (heart attack) and I would have been in Mexico during said reaction, so I opted not to take them. I did take a lot of vitamin D and still take some along with Epicor and AHCC (both suggested by Kaufman for immunity) and methylfolate and B-12. I drink a lot of Yerba Mate tea which I think had an effect, but maybe it just gives me energy. Also now taking small amounts of niacin based on a post on this site.

    All that to say that around Feb 2016 I was able to stay awake all day, and was able to walk around Mexico without having to go back to bed, but some days I didn't do very much. By April I was walking a lot more. Now I'm able to walk a few miles (around 4) and although I need to rest after that, I'm not wiped out or dizzy and feeling drugged like I was.

    My conclusion is that the tick bite started everything (reactivated the viruses) and the Famcyclovir along with everything else I take has made me well.

    I do not know what would happen if I stop taking the Famciclovir and I'm just not finding a doctor here who can follow up on all this. They either don't understand tick-borne diseases or try to use local labs that won't find anything. My decision as of today is to go back to Kaufman and have him order the labs and go from that point. I don't know if I should still be taking the Famciclovir or not.

    I hope this helps someone. I have learned so much on this site and found so many helpful people. If it were not for Jeff and a few others on this site I would not have gone to OMI and would likely still be sick.

    I'm happy to give more information to anyone who needs it.








    .
     
  2. Cheesus

    Cheesus Senior Member

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    I am very pleased to hear that you are back to good health, but I am very sorry to hear you thought you might be attacked for saying so!

    How long were you sick for? Are you able to work now?
     
    taniaaust1 and Jennifer J like this.
  3. belize44

    belize44 Senior Member

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    That's awesome news! I hope that you are truly over the suffering and can resume a normal life. I am rooting for you!
     
    justy, Jennifer J and Mel9 like this.
  4. helen1

    helen1 Senior Member

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    Fantastic news! Please keep us up to date on what your next set of tests from Kaufman show. I get what you're saying about being attacked. I've noticed that too. @jess100
     
    Mel9 likes this.
  5. *GG*

    *GG* Senior Member

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    I am not attacking you here, so don't take it that way. Its Great that you can walk about 4 miles, lots of people with this illness would love to be able to do that. Although you do mention needing rest afterwards. How much rest?

    4 miles doesn't sound like a whole lot for younger people are you middle to elderly?

    I have never had issues staying awake, more with issues on getting sleep. I only sleep during the day if I push myself and get up earlier than my Normal. Then my body crashes, so I take a nap of 1 to 4 hours. This does not happen very often. FYI Only when I do things with Healthy people.

    GG
     
    Mel9 likes this.
  6. Artstu

    Artstu Senior Member

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    I can walk 4 miles too, but I'm no where near back to normal.
     
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  7. Hutan

    Hutan Senior Member

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    Great to hear you are feeling better.

    Anaplasmosis alone can cause very significant symptoms. I'm interested in your experience with it and would like to know about the following. (Our dogs had anaplasma/ehrlichia (diagnosed by a vet from observation of a blood smear) and were very sick. I have tested negative to both although I'm not sure how accurate the test was.)

    Did you have an active infection or only evidence of a past infection?
    How was it diagnosed?
    Did you take any drugs to treat anaplasmosis?
    What tests have you had to determine your current anaplasmosis status?

    I agree with others that that doesn't sound like 'back to normal' for most people, although perhaps it is for you?
     
    Jennifer J likes this.
  8. Snowdrop

    Snowdrop Rebel without a biscuit

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    This is great news. Far from attacking you--I think you might just be a good poster child for real biological interventions as solutions for disease(s) that are poorly understood.

    Happy for you.
     
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  9. Strawberry

    Strawberry Senior Member

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    Nice to hear you are improving! Did you feel worse initially on the medicines? I tried antivirals and antibiotics both and felt zero improvement, so still wondering if I should do IV antibiotics.
     
  10. jess100

    jess100 Senior Member

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    I

    I think I was sick for over 3 years-but honestly it's all a blur. I'm retired so I am not working. I can tell you that when I was sick it would have been impossible and now I would be able to work a non-strenuous job such as teaching.
     
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  11. jess100

    jess100 Senior Member

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    I don't think I felt any worse on the Antiviral. That's a good question about IV abx. What would be the reasons you wouldn't try it. ?
     
  12. jess100

    jess100 Senior Member

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    Well I'm 60 and you're right that 4 miles isn't a lot. But I have a lot of "healthy" friends who wouldn't walk that far (can't or won't) Some of them are a lot younger.
    I had a lot of problems sleeping too which seems to have stabilized I used melatonin etc to get back on schedule. I almost always sleep at night now.
     
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  13. jess100

    jess100 Senior Member

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    I'm actually a little surprised by this because I don't know many people who walk 4 miles. I feel like most ppl don't exercise much at all ( I used to be a runner so I know it's not a lot for people like that, but I don't see many ppl doing it.) Maybe I'm very wrong. If I did this every day I would feel OK about my level of exercise.

    My understanding was an active infection of anaplasmosis and babesiosis. Here is what I found in my notes
    Version:1.0 StartHTML:0000000167 EndHTML:0000000723 StartFragment:0000000457 EndFragment:0000000707 P { margin-bottom: 0.08in; }

    Anaplasmosis (Igenex)


    IgG was 80 (where >40 may or may not indicate active infection) I believe Dr. Kaufman told me I have anaplasmosis.

    The only thing I take was Famciclovir. I'm not sure what would happen to the anaplasmosis if I stop. I have not taken a test recently because I haven't found a doctor that knows what to do. That's why I've decided to go back to Kaufman.
     
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  14. jess100

    jess100 Senior Member

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    Can I ask how many miles you used to walk when things were normal? When I was sick I couldn't go food shopping without sleeping the rest of the day and sometimes into the next day.
     
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  15. Artstu

    Artstu Senior Member

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    I was quite a big walker when well, I probably walked 50 miles every single week of the year, so my longer walks of 9 to 12 miles walks were like a walk in the park.
    I was down to less than 1/2 a mile 8 years ago.

    I'm in my fifties now, and agree that very few people walk that far, for me my walking ability isn't a particularly good indicator of my health when compared to an average fifty something man.

    I can cover an accurate 4 miles in under an hour, but I'm only able to walk that far in the winter when it's colder. I still need to rest for a large part of the day and have at least 11 hours sleep every night.
     
    Jennifer J likes this.
  16. Mel9

    Mel9 Senior Member

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    I cannot even walk 1 km without crashing into PEM but I, like you, am so much better than I was, and so want to celebrate the idea 'I'm getting better'
    It is all relative isn't it?

    Not going backwards is truly fabulous.
     
    Last edited: Nov 11, 2016
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  17. Cheesus

    Cheesus Senior Member

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    This is more like where I am at, so 4 miles sounds pretty good to me.
     
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  18. Strawberry

    Strawberry Senior Member

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    Not sure if it will actually help, and if it did, would it be a short term fix like so many of us get. The other reason would be if I have to get it at Dr Kaufman's office it would be too much physically for me to fly there regularly. I'm worse now than I was 11 months ago when I went to see him. If I can get it at my local hospital I might entertain the idea.
     
  19. Sushi

    Sushi Senior Member Albuquerque

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    Congratulations! :thumbsup: One more member finding a treatment route that worked for them is good news for everyone. Thanks for sharing.
     
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  20. taniaaust1

    taniaaust1 Senior Member

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    great to hear you found that magic combo which worked for you (though with being sick only a few years it is quite possible that a remission would of happened anyway, Dr Cheney talks about remission in ME and many of us including myself have had that experience).

    I think members jumped on that but would have to rest after 4 mile thing you saying as being normal .....as though a healthy person may not choose to be walking that far, most healthy normal people easily could do if they had to without being wiped out and needing to rest after. I remember we did further then that, a hike up and down hills, without a break in junior high school and we didnt rest after, or a day big shopping trip around the city I'd do more then that and then go home and do all the normal household things . Of cause if someone is aging or if obese, one would then expect the person to maybe need rest after that far and it would be normal in that situation to need to rest. :)

    retired and after 60 needing to rest after that distance, probably wouldnt be uncommon so it sounds like you are doing well and possibly back to normal :) . (we've heard many say they are fully recovered but often they havent and just have dropped expectations of what is normal and what isnt as most like to believe they are fully recovered.. hence another reason why all the questions you got over this and that walk).

    I hope you manage to stay well as many of us who have had remissions have got sick again (I caught a common virus going around and that gave me ME/CFS back). You'll always need to take care esp if you are ever sick when you may be more vulnerable of getting this all back.

    best wishes
    tania

    thank you for sharing. I dont think I've heard of many retirees recovering. It usually seems to be the younger ones which recover more often.
     

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