Normal?

Discussion in 'General Health & Wellness' started by alannabh716, Feb 28, 2011.

  1. alannabh716

    alannabh716 New Member

    I'm glad that I found this site, I was diagnosed with fibro and CFS when I was 17 (now 24). I had gotten a bad case of lymes that went undiagnosed for a year and although the lyme was gone by 19, I've had so many problems since and I know that fibro and CFS can bring about many of them and that everyone reacts differently but I'm curious as to how common my ailments are. First off I've been prescribed zanaflex for insomnia that I've had for years, its a really great drug, the only thing that puts me to sleep without making me feel totally groggy and hungover the next day, its also a non-narcotic muscle relaxer which I think helps my back when I sleep. I also tried a number of hormone therapies in hopes of increasing energy, as well as synthroid for my thyroid, corticosteroids for my adrenals, and treatment of yeast infections but none seemed to help. (except for the steroids which i do think boost my overall energy when i'm really low). but a couple years ago, my health was much better. i was working full time and going to school. now I can't work and struggle to get to even 2 classes. i was wondering if other people have these waves of symptoms? ive been much better and then out of nowhere, for no reason at all, get much worse and bed-ridden. i also seem to have good months and bad months, good weeks and bad weeks. recently, the past 6 months have been so much worse. i'm not sure if its the season and my depression, or stress, but it seems there is nothing i can do to even increase my energy even the slightest bit. i sleep for days at a time, literally stuck in bed unable to wake up for about 3 days. its so inconsistent and i'm just curious if this is what other people with CFS experience. I've never known anyone with it and doctors dont seem to be able to give me clear answers on ANYTHING. Again, I'm really glad to have found this website, it can be so lonely and frustrating dealing with this alone :)
  2. TwoCatDoctors

    TwoCatDoctors New Member

    I don't have Fibro or CFS, but there are good Fibro, Chronic Fatigue and Lyme boards here and you can try them.

    What concerned me was you mentioning you tried a number of hormone therapies in hopes of increasing energy, like synthroid for your thyroid and corticosteroids for your adrenals. Please read the article below that I posted here a while back. Be careful messing with hormones because unless you are getting tests that indicate you are deficient in the hormones, you could not be deficient and wind up overstimulating your thyroid and causing palpitations and can create new problems. In fact many years ago, increasing the dosage of thyroid meds was some people's way of trying to lose weight, but it's a bad idea and thyroid meds are not weight loss meds.

    http://www.hormone.org/Public/upload/Adrenal-Fatigue-Web.pdf
  3. alannabh716

    alannabh716 New Member

    Hi :) Thanks so much for the reply I'm new to the site and don't really know how to use it! Thank you for your advice, I was tested for hormones as well as my thyroid and came up low for many of them
  4. Nanie46

    Nanie46 Moderator

    Hi,

    It is likely that if you found and treated the actual root causes of your symptoms that you could get well.

    You say you had Lyme disease and it was gone by age 19. Most people who are infected with lyme also are infected with other pathogens transmitted by the same tick.

    Some common coinfections are Babesia, Bartonella, Ehrlichia, Mycoplasma, etc...

    FM and CFS are sets of symptoms that Dr's diagnose you with when they can't or won't find the actual root cause(s) of your symptoms.

    My advice is to find a Lyme literate MD (LLMD) and get a thorough evaluation for chronic lyme and it's common coinfections.

    Babesia and lyme are known to cause extreme fatigue and insomnia.

    Many people with lyme who were not diagnosed for a long time (one yr in your case), require long term, agressive treatment.

    Even if the Lyme was actually gone, you could still be very sick from serious coinfections.

    Regular Dr's will not be able to help you with these coinfections. They are not educated about chronic lyme, Babesia, etc..you need a LLMD.

    Please go to lymenet.org....click on flash discussion....sign up for free.....go to the "Seeking a Doctor" board and post a new topic asking for a LLMD in your state. Their names are confidential.

    Then go to lymenet's "Medical Questions Board" and read posts and post your questions.

    Your story sounds like alot of other people there who were first diagnosed with FM or CFS and later found out their real problem was chronic Lyme, Babesia, Bartonella, etc.

    I am curious to know how it was determined that that the Lyme was gone by age 19 if you continued to have so many problems since that time?

    It is possible that it was not treated long enough and aggressively enough, and was not really gone...along with coinfections that you may not know you have.

    Here is some info for you to read...

    symptom list pages 9-11 and coinfection symptom info pages 22-27 of the following very important paper by a Lyme specialist:


    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf



    http://www.lymepa.org/Basics2007v1.2Rev.pdf



    http://www.ilads.org/lyme_disease/about_lyme.html



    http://www.lymenews.org/d_CALDA_TwoStandards_7_2006.pdf



    http://www.lymedisease.org/lyme101/coinfections/coinfection.html




    Hope to see you on lymenet.org. It is a fast moving board with alot of very helpful and intelligent people.

    Hope you get some real answers and get proper treatment and get well.