Recently diagnosed ME/CFS– Life spiralling out of control (an open letter)

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by Antares in NYC, Aug 8, 2013.

  1. Hi everyone,

    I’ve been reading these boards for a while, but it’s my first time posting. After 16 years suffering from these awful symptoms, a specialist in NYC just recently diagnosed me with ME/CFS. I wanted to share my experience with the board, and hopefully get some answers or advice from others afflicted with this disease.

    My memory, sleep and cognition problems keep getting worse every day. I was recently laid off from my job, and to make matters even worse, my girlfriend started developing similar symptoms earlier this year. Last week she was diagnosed with ME/CFS as well, with blood test results that mirror mine. Not only am I devastated, but feel incredibly guilty and horrified that my girlfriend got this dreadful thing too. Words fail me to describe the anguish that I feel when I see her go through the same painful and puzzling symptoms I started experiencing so long ago. It breaks my heart to the point of desperation.

    Like many of you, my symptoms started suddenly, after what felt like a mild flu or a cold for a week later, but left me with issues that never went away: memory lapses, concentration issues, severe brain fog, seriously unrefreshing sleep, headaches, enlarged lymph nodes, fatigue, visual disturbances, chronic sore throat, on-and-off fever, etc. (For the record, a year prior to this “flu-like” illness, I had a major pneumonia that almost kills me soon after finishing my postgraduate).

    The lymph nodes kept getting so enlarged that some of my doctors conducted two biopsies thinking it was lymphoma. Thankfully, it was negative for cancer, and was told I had undergone some sort of “Epstein-Barr mono-like infection”. Since then, I visited every doctor in every specialty under the sun, with no definitive results. You name the specialty, and I’ve tried it. On occasion, doctors would find minor things here and there (allergies, very mild apnea, etc), and I would enthusiastically pursue therapies for such diagnoses, but they provided no improvement whatsoever. I can’t begin to calculate how much money and effort I spent trying to figure out the cause of my illness. Too many dead ends to count. I’m sure I could buy a house or a luxury car with all the money I spent in doctors and medication for 15 long years.

    At the beginning I thought I had Lyme disease, for lack of a better diagnosis, but countless tests (Elisa and WB) proved it negative, time and time again. I even visited a renowned Lyme doctor that put me on large doses of doxycycline for over 2 years, with no improvement of my condition. Around 2001 or 2002 I even got inoculated with the Lyme vaccine, which didn’t make a difference (my memory is awful; I don’t remember where or when I got the vaccine, but I know I got it around that time). If they test me for Lyme now, I would show positive because of the vaccine, so that may send doctors in the wrong direction.

    Recently, my ME/CFS-literate doctor reviewed my history and did a full panel blood test which showed the following results, among many other things:
    • Chronic EBV titers very high: EBV VCA IgG 4.1, EBV NA IgG 8.0
    • HHV-6 antibodies high: 0.80
    • Very low HNK1 lymphs CD8-CD57: 1.8%, abs 40 /uL
    • Major vitamin/mineral deficiencies: Magnesium, D, C, B-12
    My doctor determined these numbers are indicative of ME/CFS, and got me started on a high dose of Famvir for now, to see how I tolerate it. The medication seems to make me feel “out of it”, and I have developed a major respiratory infection soon after starting on Famvir. Not sure if they are related.

    I just feel absolutely devastated and demoralized about my ordeal. Not only I have wasted 15 years chasing false clues, not finding any relief to my condition, but also it turns out to be something with no known cure. This disease has limited my career prospects and dreams (the worsening memory and brain fog are things people notice), and depleted my meager savings. I haven’t had a good night sleep in 15 years despite trying every sleep medication out there. I’m exhausted, disheartened, completely broke, and now jobless. And to make matters worse, my girlfriend fell ill too with this evil thing. I love her so much, and I’m beyond heartbroken to see her go through this too.

    I feel completely demoralized, hopeless, helpless, and cursed. Ok, I’ll stop before I completely break down in depression.

    I have some questions that I would like to posts to the board, in hopes that someone more knowledgeable can point me in the right direction:
    • Lab results: for what I’ve read, my lab results seem pretty consistent with other sufferers of ME/CFS in these boards, particularly the high EBV markers. My girlfriend got very similar numbers, which seems to make sense. Why would she get this thing now, after we’ve been together for a few years? Is this common? Why now, and not 2 years ago?
    • Lyme: The fact that for a solid 4 years all my lab tests were negative for Lyme, even those requested by the Lyme specialist that put me on doxy, seems to point that Lyme wasn’t my problem. The fact that my girlfriend got sick recently also makes Lyme less of a possible culprit (her tests show she's negative for Lyme). Now, I got the Lyme vaccine a decade ago. Any Lyme specialist in the NYC area that I could consult? Is there a test that can differentiate if you are positive for Lyme from infection versus vaccine? I just wanted to make absolutely sure it is not Lyme (plus a percentage of people who got the vaccine got fairly sick too).
    • C-Pneumonia: Over the last few years I had pneumonia at least once every single year. And when it’s not pneumonia, I would definitely get a major bronchitis every winter, like clockwork. I know it may have something to do with the very low HNK1 lymphocytes. That said, after one of the recent bouts of pneumonia, my general practitioner performed a test that revealed it was C-Pneumonia. Apparently, this variation of pneumonia causes symptoms similar to ME/CFS and Lyme, and if not treated with long-term doses of antibiotics, it would keep recurring time and time again, in the form of pneumonia and bronchitis: http://cpnhelp.org. I would like to follow this trail as well, and was wondering if there are doctors in NYC specialized in this type of pneumonia.
    • Brain fog, memory and cognition: will they get any better? Will my brain start improving at a point? Anything else out there I could do to make it better? It has put a major dent in my career. Can’t emphasize it enough.
    Thanks in advance. Sorry for the long letter.

    Best.
  2. Mikie

    Mikie Moderator

    Dear Antares,

    First, welcome to our website; I'm glad you found us. Those of us here with CFIDS/ME could have probably written your post. There is a forum here with names of good docs who specialize in our illnesses. Other docs, no matter how good or specialized, do not know how to treat this. There is no known cause but there may be many triggers and there is no known cure; however, many of us have gotten better by treating our worst symptoms first and then going on to the others. I do not believe one can heal until the chronic infections are treated, even if it means taking antibiotics and/or antivirals for years (I did).

    I spent a lot of time here asking questions, doing online research, and finding a good specialist. I was doing well, even working part time. Then, I developed Sjogren's Syndrome and it knocked me off my feet--again! I learned of the peptide injection treatment developed at Oxford University. It has been used successfully to treat immune and autoimmune illnesses for more than two decades. The symptoms of my CFIDS/ME, FMS, arthritis and Sjogren's are gone. This isn't covered by insurance and costs about $3,600 but, for me, it was worth it. You may want to look into this.

    Never, ever give up. There are lots of things which can help. It's one step at a time and lots of trial and error. It isn't unusual for family members and close friends to develop CFIDS/ME. I believe we are genetically predisposed and all it takes is a trigger, such as infection, trauma or stress. There are a lot of kind, helpful members here who will help you; you are NOT alone. Treatments can help but it can be a long drawn out process so dig in, be kind to yourself and believe things will eventually get better. Best of luck to you.

    Love, Mikie
    Antares in NYC likes this.
  3. Granniluvsu

    Granniluvsu Member

    Hi Antares,

    Welcome to these wonderful boards. There is so much support here and wonderful people with lots of knowledge. We may not know how to cure what we have but we have lots of knowledge :)!! Or at least some of us do :)!!!

    I have had FM and possibly some CFS and definitely Chronic Myofascial Symptoms for over 30 years before anything had a name. So, I know what you are going through. I have little energy but not sure if that is just from getting sick of all this constant pain. Monday I am going to start working with a chiropractor and see if that helps. Pills didn't really help me other than make me groggy and afraid to drive. I still try and be somewhat active for an older person so I hate to take to many drugs. Just generic Flexeril and Klonopin before bed. I only take 1/2 Klonopin instead of a whole one so I can get up and do what I need to do when I get up - trips to the bathroom and take my Strontium for my osteoporosis. I usually can go back to sleep after that :)!!

    Thanks for posting. There are so many places to post here - the CFS and ME board and FM along with Chat where there are so many fun places to visit if you want to take your mind off your physical problems. I love the Porch and the Lounge where you can talk about anything and everything - just about anyway.

    Hope these boards will help you. Just ask questions of any of us and Moderators like Mikie if you have questions about the boards. They have just revamped them shall we say . So some of us are getting used to some parts to still.

    BTW, I come from NY originally too but got transferred years ago with DH to TX. Yep, its hot and thank goodness for a/c. How is it there ?

    I too started out with Ebstein Barr stuff. Talk about frustration for year with any not really believing in you - it was the pits.

    Hope to talk to you again soon !

    Soft hugz to you,
    Granni :)
    Antares in NYC likes this.
  4. Nanie46

    Nanie46 Moderator

    Hi Antares,

    Welcome! Thanks for sharing your story. Considering that your illness started with a flu-like illness, it is likely that the root cause of your illness is one or more chronic infections. It seems that you have, and still are actively pursuing this route.

    Many people with Lyme have only had negative tests. You had no improvement on 2 yrs of doxy which could mean several things. Perhaps you do not have Lyme, perhaps you have one or more serious coinfections that must be treated first before the Lyme improves, or you have some issues that do not allow you to detox as you should...such as methylation pathway problems, MTHFR mutations, etc.

    Lyme disease is only one strain of Borrelia.....borrelia burgdorferi. There are other strains of Borrelia, one which has been recently identified in the northeast...borrelia miyamotoi. Standard Lyme tests are designed poorly and designed to detect only borrelia burgdorferi. It is possible that you could have a different strain of Borrelia.

    There are also other vector-borne infections that should be considered. Bartonella is a very common but serious infection spread by ticks, fleas, cats, etc. Have you been evaluated for Bartonella henselae and Bartonella quintana? Your chronic sore throat, off and on fevers and enlarged lymph nodes can be symptoms of Bartonella infection.

    Babesiosis is another tick-borne infection that should be considered. Many people with Borrelia infections do not get better until their Babesia infection is treated.

    Ehrlichia is another....although doxy is used to treat that one too.

    Dr Burrascano's paper about Lyme and other tick-borne diseases:

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

    Then there is Protomyxzoa Rheumatica which has been discovered in mosquitoes, although many people with Lyme also have it. PR was identified by Dr Stephen Fry of Fry Labs in AZ. He does testing for it there, along with testing for Bartonella and other infections too. Treatment for PR so far involves drugs like Ivermectin and others.

    Here is info about Protomyxzoa Rheumatica via an interview with Dr Fry:

    http://www.iadvocatehealth.org/protozoal_infection0.aspx


    There is a Lyme Culture test being done by Advanced Labs in PA. Here is some info about it. You could call there and ask if having the Lyme vaccine has any bearing on the culture test. I am thinking that it should not affect it since a culture test is not an antibody test.

    http://www.advanced-lab.com/faq.php

    http://www.advanced-lab.com/

    http://www.advanced-lab.com/spirochete.php


    In order to find a LLMD in NYC, I recommend going to lymenet.org....click on "flash discussion"......sign up for free.....click on "Seeking a Doctor" Board and create a post asking for a LLMD in NYC (put that in the title of your post). Ask for recomendations from members. You will receive one or more private messages with info.

    Lyme and some other infections can be transmitted sexually. Who knows about the timing of your girlfriend's illness. Perhaps her immune system fought it off for awhile, or for whatever reason she was not infected immediately. It's so hard to say.

    It's good that you are giving anti-virals a try. It is also important to strengthen the immune system, correct deficiencies, eliminate foods which you may have become sensitive to such as gluten, dairy, etc, correct problems with hormones (which helped me a lot), and adrenals.

    A good integrative medicine Dr or Naturopathic Dr may also be able to help you. They tend to pursue things that mainstream Dr's do not.

    I think you have a good chance of improving. Keep researching, pursue evaluation for various infections, strengthen your immune system, etc. I was infected for 21 years before discovering through my own research that I had Lyme and other tick-borne infections. I am about 80% better overall. Please do not ever give up.

    Don't accept diagnoses that have "no known cause". Everything has a cause. Finding it is key.
    Antares in NYC likes this.
  5. Mikie

    Mikie Moderator

    BTW, we have an excellent research library here. It's disguised as "Supplement News" at the top of the page. It has a search function. The more proactive we become with our own research and our docs, the more we empower ourselves against these horrible conditions. That, by itself, is healing. Again, good luck to you.

    Love, Mikie
    Antares in NYC likes this.
  6. Abdulrahman

    Abdulrahman Member

    Hello Antares,

    I know how you feel, been through a very similar prison sentence as yours........Guilty of Aiding and Abetting Viruses and Strange Bacteria.....Twenty Years to Life in the Slammer was my sentence but I escaped six months ago :). You can find my story at the Prohealth post below :

    http://forums.prohealth.com/forums/...hat-worked-for-me-no-more-cfid-part-1.263320/

    By the way your posting shows a very logical thinking process so you are quite smart but are just stuck in a maze like i was. I was forced to become a Natural Doctor just to cure myself......even though I'm a practicing Consulting Mechanical Engineer. Just believe in your intellectual power, and start smiling because now you know exactly what your enemy is and that it can be eliminated with a strong program.

    Abdulrahman
    Antares in NYC likes this.
  7. Darrae

    Darrae Member

    Hi Anteres,

    I only started posting on the boards a couple months ago. Welcome! I've had FM, Arthritis, Hypothyroidism, Heart disease for 18 years. I was totally disabled for 6 years. I was in a horrible car accident. That was the "trigger" for the onset of the Fibro. My disease is different than yours, but the symptoms much the same in many ways.

    I could not work. I could not walk half a block. If I went to the store, it put me in bed for 3 days. I couldn't play with my 6 year old son. I was told I was not allowed to pick up and hold my grandchildren. All I could think of then, was all that I could not do.

    Then, I saw an herbalist and a new Chiropractor. It took me another 8 years, but I am actually working an 8 hour a day job that is quite physically demanding. I've learned to "cope' with the pain, I've become the "post it queen" at work, you do slowly find ways to deal with the symptoms.

    I will never be the same. That is the hardest part to accept. Even though I work, I still am in 24 hour a day, 365 days a year pain. The brain fogs come and go. There are days my cognitive levels are atrocious and I feel like a complete idiot. I go home and feel like somebody dropped a wrecking ball on me every night. No cure for me as yet. Or for many of us.

    I medicate, get up at 5:00 a.m. and do it all over again. Day in and day out. I was one of the lucky ones. I found ways to cope. But it took years. I don't know how long I will be able to keep this up, but I am grateful, that for at least a while, there was a light at the end of my tunnel and I have the privilege of being able to work for now.

    I understand your frustration, feeling of dependence and helplessness and sense of loss. We've all been there. As for your guilt that your girlfriend is in the same boat. Well......don't. Stuff happens. You would never knowingly have shared this problem had you known. Don't beat yourself up.

    There are new answers and new treatments every day. I, personally, have taken a Homeopathic approach, which my M.D. supports. I still have to take a few prescriptions for pain, muscle relaxants, sleep ....etc. but I also take a plethora of homeopathics that actually help and give me the ability to do what I do. Hopefully your answer will come, and, with any luck, you will have a light at the end of your tunnel too. Keep fighting! These boards are a great source of information, and a place where you can talk and people understand. Am attempting to re-post

    Darrae
    Antares in NYC likes this.
  8. Thanks so much for the encouraging words :), but I wanted to ask you to please post your link again. It looks like the hyperlink is broken, it gives an error. I'm interested in learning what has worked for people, what protocols, medication or supplements have made a difference.

    PS: I used to be "smart" before CFS. Three college degrees and borderline Mensa IQ. These days I can't even remember what I had for breakfast, and everything inside the noggin feels like a scattered box of Legos. :(
  9. Abdulrahman

    Abdulrahman Member