Hi... I'm new and I have questions =)

Discussion in 'Fibromyalgia Main Forum' started by doggymommy, Sep 22, 2008.

  1. doggymommy

    doggymommy New Member

    Hello everyone

    I'm 26 years old and got mono at 18, was tired on and off, and then became really sick in 2006. I'm just now starting to accept CFS as my diagnosis and that I'll always have it. I miss school and work SO MUCH.... I was going to save animals and get a PhD in Animal Behavior and be a Veterinarian and have a dog rescue... instead I do nothing and I'm having a very hard time accepting it, as I'm sure we all are.

    I've been snooping around here for a few days and I must first say bless you all! It has been SO good to know I'm not alone and that maybe someone DOES understand! THANK YOU ALL FOR BEING HERE!!!

    I am wondering if anyone has suggestions on tests to rule out everything besides CFS? I have had an MRI, zillions of blood tests, EEG, and CT scan (I think it was of my neck). My doctor (does anyone else go to Holtorf Medical Group?) doesn't think I need anymore tests, he's convinced it's CFS and he's probably right but what if it's something else? Something fixable?! I haven't had my heart checked out but I think I should... yesterday I had palpitations all day and it was hard to get enough air. My worst symptom is the brain fog... I hate not being able to read or learn or drive. I'm still trying out all kinds of different drugs to see what works... what do most of you take? Prozac helped me a lot for about 9 months and then it just stopped working. Now I'm on wellbutrin and thyroid meds and dextroamphetamine (he's changing that one to adderol cause I think it makes my heart mad) and valtrex and hydrocortizone and some supplements.

    I also have a problem with rambling... lol

    Oh and I also want to know if there are any ideas for jobs we can do... without talking on the phone cause my foggy brain doesn't like that. And preferably having something to do with animals so I dont feel like a complete waste of a life.

    Sorry this is rambly and confusing...
  2. goofgirl

    goofgirl New Member

    Hi doggymommy,

    I don't know how much advice I have for you, since I'm in the same boat you are and trying to figure this all out myself. But I'm a "doggymommy" too, have always loved animals, and I started going to Holtorf Medical Group in Torrance a couple of weeks ago, so we have some things in common (besides the CFS!)It is one of my biggest frustrations that I haven't been able to accomplish more in my life. People have always described me as "bright" and able to do anything in life that I choose...but when you can't stay healthy, your options become greatly limited. I couldn't finish my degree; missing class became a big problem for me too. I'm now 31, and find myself wondering how different life might have been if I'd been well instead of sick all the time...

    I'm lucky enough to work a government job, so I get a lot of sick and vacation time, and I've stayed with them for almost 10 years, so they are slightly more understanding now than if I were at a new job every couple of years... but even then, I've eaten away all of my leave, even vacation time, being sick and unable to go to work. I've finally gone on short term disability while I work with my doctor to come up with a treatment protocol that will help, and give my body a few months to really rest and heal after this last "flare", which consisted of a severe sinus infection that lasted 4 weeks, vertigo and fatigue. So I don't have a good answer for you as to what kind of work suits us best, as I obviously haven't figured that one out yet. In fact the doctor at Holtorf said I might want to consider finding a different line of work. lol. I would think something where you could work at your own pace, and even from home, or in an environment that doesn't have a whole lot of stress... All the things my job isn't, of course!

    Going to Holtorf, I'm sure they've tested you very thoroughly for anything your illness could be besides CFS. I know they don't want to diagnose you with that until everything else has been rulled out. As far as medication goes, I'm on Zoloft, and have been for a couple of years now off and on. It definitely helps with the depression that comes with being ill. My other doctor gave me a sample of Provigil, which is supposed to help with fatigue, but I didn't really notice a difference, it just gave me a terrible headache, so I stopped taking it. I'm waiting to get my script for Ambien CR filled, to see if maybe addressing the kind of sleep I'm getting might help give me more energy. I've also been on 90 mg of Armour for over a year, which the new doc may end up increasing, or giving me some additional T3, after he sees my blood test results. I'm thinking the dextroamphetamine could be causing your heart palpitations, couldn't it?

    Welcome to the group, and I hope the posts here are helpful. I just came back and am a newbie myself; I find it really comforting to talk to other people going through the same issues, as people in my life don't really "get it"; they are empathetic, but don't understand how bad it can really get. I look forward to seeing your posts!

  3. Atlanta8

    Atlanta8 New Member

    From what I've heard, the Valtrex should help a lot, but it takes a good few months before you start seeing the results. I too had mono last year and I really want to be put on Valtex, but I think I should sort out my diet and thyroid first. I live in the UK but was planning on flying over to see Holtorf in November. Part of me really wants to (I'm sure I have active EBV, and they don't bother treating it here), but the other half is shouting 'Wait!' and see how I improve over the next few months (in case I have candida).

    If you haven't already, read Karen's post about PEM and what she uses to treat that (she's taking supplements to help get rid of excess lactic acid etc). Also address diet (again, if you haven't already) - most CFS ppl have candida of the gut and that needs to be treated by a strict no sugar no carb diet for at least a few months.

    BTW, have you noticed a difference on the Holtorf meds and would you recommend clinic?

    Anyway, I hope you find the right treatment for you soon.
    Best wishes,
  4. jenn_c

    jenn_c New Member

    I am sorry you have CFS, but you have come to the right place. My name is Jenn and I have Fibromyalgia. I can totally sympathize with the brain fog, I have used the dictionary more in the last few months then I have all my life. I also used to be a great public speaker, now my word retrieval sucks.

    As for meds, I know that we might need some different ones with you having CFS and me FM. First I wanted to warn you about adderal. It is a medicatin used for ADHD. My son was on it at 4 yrs of age. It caused really bad mood swings. Other parents I have talked to have had the same experience with it. My meds are as follows:

    Fentynl Patch 100 mcg change every 48 hours.
    Celebrex- 400 mg. Robaxin- 750 mg 3 times a day
    xanax- prn temazapam 15-30 mg at bedtime
    celexa- 60 mg. Lyrica- 450 mg

    If you want to continue to research more to see if you could have something else, then by all means. However, your doctor appears to be pretty adament on it and may not know what else to try. It is very difficult when you get diagnosed with CFS or FM. Your whole life changes in a blink of an eye. Do you go to therapy? If not you may want too. Especially if you are having a hard time accepting the diagnosis. Is your primary docter good? Good luck, hope I helped.


    [This Message was Edited on 09/22/2008]
  5. doggymommy

    doggymommy New Member

    Sorry this thread is old by now but I wanted to ask if anybody lives in Southern California and/or if anybody knows of any "real life" support groups in the area? This forum helps a lot but I'm still so lonely... and I've been told I need to "find some friends", by my boyfriend who is sick of being my only friend through all of this.

    Thank you for your help and for being here!
  6. ladybugmandy

    ladybugmandy Member

    hello. i have been sick for 15 years after i got mono. i was so sick and my brain fog was so bad i almost killed myself many times.

    i am now getting better VERY slowly under the care of the best CFS doctor in the world (for the EBV subset of patients)...dr. a. martin lerner.

    gather enough money (or see if your insurance will help pay for it)....fly to michigan and see dr. lerner. you will have to go a few times.

    he will outline a protocol that your local doctor can follow based on his tests.

    you will likely have to take valtrex and maybe valcyte too, and rest A LOT.

    in less than a year, you will start to improve.

    you do not have to live with this.


    [This Message was Edited on 10/16/2008]
  7. doggymommy

    doggymommy New Member

    I do happen to be that subset of patients... I have EBV, CMV, and hhv6... but I don't think they're ridiculously high values. But anyway I found his website and was looking at it and it looks to me like he basically relies on Valtrex and Valcyte... is that right? My Dr suggested Valcyte but even with my insurance it would have cost $800 a month! So I'm taking Valtrex instead but then he told me to stop it for a few days because I've been feeling nauseous to see how I feel. But I don't understand why it's making me feel sick now because I've taken it before for cold sores so maybe it's the hydrocortizone he has me on. Oh I'm rambling again.

    1. What tests does he generally do to rule out other things?
    2. Does he basically rely only on Valtrex and Valcyte?
    3. About how much is a consultation?

  8. ladybugmandy

    ladybugmandy Member

    doggy....he rules out lyme and other bacterial infections. he also does some immune testing i think. he also tests fecal matter for some pathogens.

    whether your antibodies are high or not doesn't matter. they are pretty useless. many studies show active virus by tissue culture even though antibodies are not elevated.

    dr. lerner does his own EBV and CMV testing at his own lab. it is a more sensitive test than anywhere i have been to.

    if your illness started with mono like mine, i would go to lerner ASAP. he is in his late 70's and may retire. he is the only one in the world that knows the right combination of drugs to use. trust me on this. he has 25 year's experience with this.

    you can get valcyte for free from Roche if you can't afford it and are american.

    you will pay $1000 for the first visit and about $2600 for the testing. your insurance may cover some of it. he takes medicare and bluecross.

    subsequent visits are $250 plus about $150 for testing.

    [This Message was Edited on 10/17/2008]
  9. blakeusa

    blakeusa New Member

    Around animals alot.... - symptoms sounds more like Lyme disease.

    My Lyme Dr who has treated thousands says the CF/F is more often a blanket Dx. What is the root cause or the underlying issue. Lyme disease is a CLINICAL DX and not a simple yes/no blood test.

    It is very easy to get and many have it and dont know.
  10. richvank

    richvank New Member

    Hi, doggymommy.

    I'm sorry to hear about what you have been going through.

    I'm a researcher and have been studying CFS for 12 years. Four years ago I learned of the work of Jill James et al. in autism, involving glutathione depletion and a partial block in the methylation cycle. It appeared that these same biochemical issues are present in CFS. A little over a year and a half ago, with the help of another person, I suggested a treatment for this condition consisting of five special food supplements that are available on the internet (no prescription drugs), which is relatively simple and inexpensive (less than $3 per day).

    Shortly after that a test panel became available from Vitamin Diagnostics, Inc., for determining whether a person has glutathione depletion and a methylation cycle block. The combination of this test panel and the treatment are currently helping a fairly large number of people with CFS (PWCs). A small open-label clinical study has been underway for about 6 months. The results have not been reported out yet, but the data at 3 months were very positive. I am not financially connected to either the lab that performs the test panel or to the suppliers of the supplements, or to the doctor who is conducting the clinical study.

    I suggest that you ask your doctor to order the Vitamin Diagnostics, Inc., Methylation Pathways Panel. It costs $300. Here is the contact information:

    Vitamin Diagnostics, Inc.
    Rt. 35 & Industrial Drive
    Cliffwood Beach, NJ 07735
    Phone:+1 (732) 583-7773
    Fax: +1 (732) 583-7774)

    Lab Director: Tapan Audhya, Ph.D.
    (usually at the lab on Tues. and Wed. from 1 to 3 p.m., Eastern time)

    Dr. Audhya is willing to help doctors with interpretation of the panel results over the phone.

    The doctors at the Holtorf clinic have heard of the methylation cycle test and treatment, though I don't know if they are using them. Dr. Teitelbaum, who is the medical director of the Fibromyalgia and Fatigue Centers of America, with which the Holtorf clinic is loosely affiliated, has been giving information about this to the doctors for several months, and a few of them are starting to try it.

    The significance of the methylation cycle block, in my view, is that it lies upstream in the biochemistry from the various aspects that the FFCs and the Holtorf clinic are treating, including the fatigue, brain fog, sleep problems, cognitive problems, pain, immune dysfunction, reactivation of infections, toxin buildup, hormonal irregularities, and all the rest. It really appears to be the core issue in the pathogenesis of CFS for many or most PWCs, and it is treatable without drugs.

    If you want more information, please read my post of July 18, 2007.


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