1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
Discuss the article on the Forums.

Lyme on my mind

Discussion in 'Phoenix Rising Articles' started by wdb, Nov 11, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

    Messages:
    649
    Likes:
    995
    View the Post on the Blog

    View the Post on the Blog
    Last edited by a moderator: Nov 11, 2013
    MeSci, aimossy and merylg like this.
  2. Astrid13

    Astrid13

    Messages:
    29
    Likes:
    14
    My personal blog can be found at rocasvida.com
    :)
    meandthecat likes this.
  3. meandthecat

    meandthecat

    Messages:
    96
    Likes:
    99
    UK
    Dear Asrid13 your description of cognitive decline sets great bells clanging in my head and how hard it is to explain the total inability to do the simplist things. 2+2 does not equal 4, A does not followB as thought unravels.
    Good luck on your journey.
    roxie60, rosie26 and Wayne like this.
  4. snowathlete

    snowathlete

    Messages:
    2,069
    Likes:
    2,243
    UK
    Thanks for telling your story!
    I discovered I have Bart and Lyme this year!
  5. Xandoff

    Xandoff Michael

    Messages:
    292
    Likes:
    183
    Northern Vermont
    Watch this movie...you will be glad you did!
    justy likes this.
  6. justy

    justy Senior Member

    Messages:
    2,489
    Likes:
    2,361
    U.K
    Thanks for writing about your experiences here and especially for alerting us to the film - I just watched it this afternoon and it was very good. Here in the UK we have the same problem with any GP who treats CFS/M.E patients with real treatements being hauled up in front of the GMC - some have had special measures imposed and are continually harassed by the medical authorities.

    The film was really pretty scary as here in the uk we don't even have any testing offered at all, and no LLD's that i'm aware of. It makes me woder if there is any point in faffing about the edges with diet, adrenals, supplements ect when it's very possible I could have some kind of tick borne vector.

    I spent a lot of time hanging out in fields as a teenager on the fringes of London and camping out in the grass. Now we live in an area with a LOT of ticks, as my dog keeps coming in with them all the time. Over the summer we removed 35 in one sitting from his head and ears. Strangely though our vet says there is no LYme disease here - how can he be sure of that? How do we know the dog is even safe from the tick bites?

    It's got me wondering about whether it's possible to get good testing here in the UK such as that done by KDM in Brussels.

    all the best,
    Justy.
    RosieBee and MeSci like this.
  7. roxie60

    roxie60 Senior Member

    Messages:
    1,636
    Likes:
    495
    Central Illinois, USA
    Thanks, amazed at the similarities we all have and yet a few differences. Curious about your IGenex results. I'm trying to determine if I have Lyme, my gp says no based on NEG IGenex even though there are a few INDs /+s, also had low CD57 of 55. If you dont mind would you share your IGenex results. A lot of confusion about Lyme diagnosis so feel better when I see other peoples results. I've been fighting this 'mystery illness' since 2005-2006 and I'm fed up. I dont want Lyme I just want answers and I'm not sure my GP really has the knowledge to rule out Lyme.
  8. I live in UK and things re Lyme Disease diagnosis are rather dire although Lyme Disease Action is making some progress with Public Health England - it will be a long time before things improve.
    I was diagnosed with Fibro, ME/CFS, Musculo skeletal Disease, Polymyalgia Rheumatica before a chance course of antibiotics significantly improved my symptoms a led to GP suspecting Lyme Disease ( other patients had been diagnosed at my surgery in Guildford Surrey)
    My NHS and later IgeneX tests were negative but my response to antibiotics was sufficient witha clinical history of bites, bulls eye rashes summer flu and migrating arthralgias before a chronic painful debilitating illness developed.
    On long term antibiotics I regained my health and life.

    There are many reasons why blood tests can be negative and still a person can have lyme even Igenex says this on their test results.

    There is so much information available for patients to get informed so they can make informed choices - just don't expect NHS doctors to know anything worth knowing about Lyme disease visit http://www.lymediseaseaction.org.uk/

    Even if you do not think your ME could be Lyme Disease it is worth reading Dr Horowitz new book relevant for anyone with Chronic illness links to a video, a chapter of his book and amazon on my blog http://lookingatlyme.blogspot.co.uk/2013/10/infection-inflammation-immune.html

    Good luck in finding the causes of your ME and in being able to treat those causes.
  9. S.A.

    S.A.

    Messages:
    37
    Likes:
    44
    Missouri
    Thank you for sharing your courage and determination!
    justy likes this.
  10. Astrid13

    Astrid13

    Messages:
    29
    Likes:
    14
    My goodness!! Hello everyone! I've been rather ill since my post, but I am here now and ready to chat with you all:)
  11. Astrid13

    Astrid13

    Messages:
    29
    Likes:
    14
    Meandthecat-
    Is it possible that you might have been infected with Lyme's? It can mimic 350 different diseases?
  12. Astrid13

    Astrid13

    Messages:
    29
    Likes:
    14
    Yes, Marilyn60, you bring up a fantastic point. Lyme Disease must be considered even if testing yields negative results. From my studies, I've also learned that lab results can vary from day-to-day. LLMDs will still diagnosis and treat based on clinical presentation of symptoms and medical history. I am so glad that you were able to regain your health and receive proper treatment!! We are among the lucky few! Thank you so much for sharing your story and knowledge!
  13. Astrid13

    Astrid13

    Messages:
    29
    Likes:
    14
    Best of Luck to you!! It's liberating to discover the truth behind our illnesses. Please keep me posted as I am so curious about your journey and recovery to health!!
    Xoxo
  14. Astrid13

    Astrid13

    Messages:
    29
    Likes:
    14
    Yes, Xandoff! It's is alarmingly eye opening and informative. I suspect so many sufferers are misdiagnosed and the movie really drives that point home.
    Xoxo
  15. Astrid13

    Astrid13

    Messages:
    29
    Likes:
    14
    Hi Justy!
    Thanks for posting:) If you were exposed to ticks at a young age and you are currently finding them on your dog, then the chances are very high that you've contracted a vector borne disease. I am not aware of any LLMDs there either, as I live in the US, but there is a large forum where you can chat with others called MD Junction. Please check it out and you can also get an Igenex lab kit sent directly to you, if you have a lab or physician willing to sign the orders.
    Please keep me posted, I'd love to help you!!
    Xoxo
    justy likes this.
  16. Astrid13

    Astrid13

    Messages:
    29
    Likes:
    14
    Yes, I will post results today! Please remember that testing only confirms Lyme's and diagnosis should be truly based on clinical diagnosis. It is quite possible that you are still positive and that is why a Lyme Literate Medical Doctor is crucial in cases like yours. I will get the results up today and I'd love to share more with you and help you get more direction!
    Xoxo
    roxie60 likes this.
  17. Astrid13

    Astrid13

    Messages:
    29
    Likes:
    14
    Thank you, S.A.!
    I sure hope my story resonates with others so they are able to find their way through the sea of misdiagnosis!
    S.A. and roxie60 like this.
  18. Astrid13

    Astrid13

    Messages:
    29
    Likes:
    14
    Please follow my blog at www.rocasvida.com
    It is a wealth of information for anyone that suspects Lyme may be the culprit in their medical woes. It also encourages us all to take matters and become our own health advocates!
  19. Astrid13

    Astrid13

    Messages:
    29
    Likes:
    14
    Hi Roxie60,
    Here ya go...
    Lyme IgG Western Blot
    **31 +
    **34 +
    **39 Ind
    **41 +++ (triple intensity!!)
    58 +
    **83-93 Ind
    Igenex Positive
    CDC Negative

    Lyme IgM Western Blot
    18 +
    **23-25 Ind
    ** 31 ++
    ** 39 Ind
    ** 41 +
    58 ++
    **83-93 Ind
    Igenex Positive
    CDC Negative

    IFA, B Burgdorferi Results= 40
    <40 Negative
    40 Equivocal
    = or > 80 Positive

    CD57 Results-
    CD57 NK Absolute CT= 67

    <40 Low
    40-98 borderline
    >98 Normal

    CD57 NK Cells % Lympho=2.26

    <2.26. Low
    2.26-4.65 Borderline
    >4.65 Normal

    Please send me yours and I will help you sift through them!!
    You may also want to retest if it's been awhile. I know that it's costly, but at this point, every bit of our illnesses rob us of so many things.
    I'd be glad to help in anyway!
    Xoxo
    roxie60 likes this.
  20. Pam123

    Pam123

    Messages:
    22
    Likes:
    9
    Astrid13:

    Thanks so much for posting your story. My daughter has been so ill for the last 2 1/2 years. Finally tested positive for Lyme (IGM positive - IGG negative). CD57 of 4!!

    She has just started antibiotics and I know it is going to be a long road ahead but at least I feel we are on the right track.

    Good luck and hope you are feeling better soon.

See more popular forum discussions.

Share This Page