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ME/CFS and the Magic of the Canine Factor
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New.. Need help need to vent.

Discussion in 'General ME/CFS Discussion' started by Jonjay, Aug 17, 2013.

  1. Jonjay

    Jonjay

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    Thanks in advance. I will tell you off the bat this will be a long post, long overdue and necessary for me.

    I'm 28 years old, just moved back home with mom, and nearly incapacitated due to what I believe is CFS. (not professionally diagnosed, yet) This isn't new, for I have suffered from symptoms for years, but managed to live my life based on a few factors (mainly because my previous employers have always taken easy on me and kept me around) but also my career path has allowed me a little more freedom.

    Anyways, my sleep schedule has always been in disarray, messed up circadian rhythm etc. Goto bed around 3am sleep until easily 3pm (12 hours) I've suffered with being unable to maintain a 'normal' schedule and this has caused problems (unreliability) in my life. But I have always known it's been more than just bad habits. If I wake up early, even after getting 8 hours of sleep, I'll literally have no energy throughout the day and like clockwork by 3pm i'm in the process of a 'crash' body and mind both shutdown. And by 5-7pm I pass out. (creating a nasty habit obviously of a bad sleep cycle) I noticed if I sleep in, and wake up around 3pm and then goto sleep around 3am I don't experience this. This has been going on now for easily 5+ years.

    Recently a bunch of things began to occur in my life which has led me finally to now seek out doctors for both the actual problem and treatment because I have always known something was wrong, and now here is my opportunity (no work, no responsibility etc etc) Obviously, first stop was the sleep clinic. I went back in January, and had an overnight study done. They told me I have Upper Airway Resistance Syndrome or UARS which basically airway resistance to my breathing during sleep. The primary symptoms include daytime sleepiness and excessive fatigue. Perfect I thought, this is the problem! I get CPAP, I can't use it. Next option was an oral device that pushes my jaw forward to allow better air flow. Good news, it worked, kind of. Took my body's need for 12+ hours of natural sleep (no alarm clock just sleep and wake up cycle) to 9 hours, like clock work. Ok cool, progress. But I still have the same excessive fatigue during my days, whether I do something or not. Obviously days when I work or have to do something I am affected worse. The slightest task is tiresome (for example I was just folding laundry and it took everything out of me)

    So this took a course of months to actually get done, I finally got prescribed from the sleep center for provigil which was my 'last resort'. I started taking this stuff last week. Have kept a log, it created some hope in me, but I still experienced these fatigue spells mid-day, and although I didn't fall asleep I was able to push through them, unfortunately yesterday I had a spell and passed out at 7pm and woke up at 10am this morning. Anyways, from January until now I have been seeing my Endocrinologist and blood work showed actually I had low Vitamin D. Great, another 'reason' why the fatigue. Began taking 50,000IU weekly, but again no solution, even with the oral device etc. etc.

    Thyroid came back fine, as well as other 'causes' (I guess whatever they would normally check for. She also told me I have High testosterone. (explains alot haha) I went to goto my GP today and she wasn't in. I was going to complain to her and hand her a list of stuff I want tested for (EBV LYMES) and some others I jotted down through all my research on the internet.

    I'm drained. My life sucks. My mom and dad and friends think i'm lazy. My father keeps saying goto a counselor, which I've done in the past but he is adamant that that is the problem. It gets me so angry. When I'm functioning i'm fine and feel ok, but when I'm not, yea sure i'm unhappy and 'depressed' who wouldn't be? My mom trys to be understanding but she's not and anytime I try and discuss what I'm thinking or found in regards to this she shrugs it all off. My friends don't understand they think i'm lazy or sleepy etc etc. I really don't know what to do. Out of spite I actually went to a counselor yesterday to tell my dad 'told you so' But I am certain it is not depression causing this, if there is depression, it is a BI PRODUCT of whatever medically is wrong.

    I have an appointment for a Neurologist Monday, just because, and a Rheumatologist Next month unfortunately it's so long because I guess they are busy. I just want to cry, really, I don't know who to talk to. I am running out of money I literally have 3k left, I have a car lease I got into last year when I was making money. I am a type 1 diabetic (yes my blood work and blood sugars are fine in regards to all this)

    Last I want to mention is other than dragging the most of the day (which doesn't necessarily happen if I take provigil now) When these fatigue episodes occur mid-day they go like this:

    I always begin to get a heavy feeling in my chest or behind my heart, i like to say my 'core' it's weird, but its like a spell that comes over me and begins to drain my physical body. I begin to get real pale and real baggy black circles under my eyes, I begin to look sick, or like a crackhead. I can't think or speak for that matter, like I really can't speak. I can hear, and listen, but can't respond. Text's work to chat but not vocally. And eventually I have to lay down, and I pass out. Some times (not always) I get these crazy body shakes, and cold. But it doesnt always happen.

    Everything I do though is draining. I do any activity for an hour or so I have to sit. I can never really stand without it taking a ton of energy to do so. I was going to the gym until that just made me feel worse so I stopped. I have been on the couch up and down all day today. It's beautfiul out and I'm here. This is my life

    Ugh. I question everything sometimes. Is this all in my head. Am I a hypochondriac. Are my parents right? I am full of fear, my mom is getting sick of watching me lay around all day. I have fear I will run out of money, then what? Where do I live? How do I generate income? I'm dying mentally physically financially spiritually and emotionally. I just need to vent.

    Maybe somebody can say or direct or guide me in the right direction. All these doctors I don't even really know who to goto or what to look for. I feel the doctors are incompetent or don't understand. My highest hope is with this rheumatologist, and thats 4 weeks away. WTF am I supposed to do until then. Ugh.

    Thanks in advance, sorry for the rant. -Jon
    Firestormm likes this.
  2. Kati

    Kati Patient in training

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    Dear Jon,

    i understand.
    Please let us know what continent (and if you are willing, your general area) you are in so we can help you find a competent doctor.
    Competent doctors matter a lot with us. we re complicated, extremely sick and indeed family and friends don't get it.

    Know you are in good company over here.
    Kati
    ggingues, anna8, beaker and 1 other person like this.
  3. Jonjay

    Jonjay

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    United states. New York. Specifically Long island Suffolk county.
  4. Kati

    Kati Patient in training

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    Dr Derek Enlander is the guy you want to see. He's in New York.
    I would say that you want to see this dr before the neurologist and before the rheumy, save your money.
    you need a proper diagnosis and most neurologists and most rheumys have no clues about ME and CFS diagnosis criterias.

    Going to a dr who understands matters. If you need your parents to understand, bring them with you to your appointment.

    Dr Enlander may be a bit pricy, however there would be little travel costs to you, since you re already in NYC. many of us have to fly to go see our ME specialist.

    A second option for you would be Dr Susan Levine also in NYC.
    Jonjay, maryb, beaker and 3 others like this.
  5. Comet

    Comet

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    Hi Jonjay. I am so sorry for what you are going through - and I understand completely. I am a perpetual lurker here and have found a wealth of information. At the moment, I am working up to starting a methylation/B12 protocol (getting the basics in place first).

    Your story touched me and since I too live in Long Island, I felt I needed to reply. I have been sick for 13 years now with ME/CFS. You might want to try Dr. Enlander. I'm sure others will recommend him as well since you are in the area. He practices in NYC, takes many different insurances and is fairly easy to get an appointment with.

    That said, unfortunately, his usual protocol was not helpful to me. I was on his hepapressin (immune modulator) as well as several of his other supplements, including B12 injections. This was several years ago and I am still not sure whether it was the hepapressin (spelling?) or other supplements which made me sicker. However, I believe many have been helped by his protocol.

    I went back to see him about a year ago and started his GcMAF injections. I was only able to continue the injections for a couple of months, due to both the cost and the fact that I'm just too exhausted to travel into NYC for follow up visits at this point.

    Anyway, he does do a lot of testing, as I'm sure others on this forum will confirm - and that is always a good place to start. For example, he will test for your viral load, among many other things. What's also nice about his office is that they draw the blood right there, so there is no extra trip to the lab. Btw, I would recommend getting and keeping copies of all blood work and other tests.

    I believe Dr. Enlander also works with LDN, which is something some people have had some improvements with, has a powdered version of the GcMAF yogurt which you can culture at home, and is involved in some other research (regarding methylation and maybe still Ampligen?) as well. Current patients of his might know more about this.

    You might also consider 23andme.com. If you are not familiar with them, they test your DNA for defects. Only $99. Many of us then run the results through programs like geneticgenie.com or livewello.com for interpretations regarding MTHFR defects (a whole other topic... lol). Although 23andme will mail you the kit for the (saliva) test, you can not perform or mail the test from NY - you will have to drive out of state to spit and mail. :rolleyes: Unfortunately, NY strictly limits tests that you could order yourself online.

    Really, I just wanted to say that I understand what you are going through. And that although others who do not have this illness may not understand, if you believe that you are physically sick, you probably are. Most of us with this illness have experienced the same disbelief and disapproval from others as you have mentioned. I have lost friends, family, and much more because of this illness.

    Try to do all you can to get the proper testing so that perhaps some of the layers of illness can be removed or minimized to help you feel a bit better. You are young and maybe that can help your body fight. One of the things that helps me is to remember to fight with this illness, not against it, and to recognize my limitations.

    Sorry for the long reply... I really just wanted to tell you that you are not alone and to try not to lose hope. Best wishes to a fellow Long Islander!
    Jonjay, anna8 and helen1 like this.
  6. Comet

    Comet

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    Just remembered, there is Dr. Mazlen who is in Roslyn. I saw him many years ago. He is also an ME/CFS specialist. The reason I mention him is that I believe he has an account with Genova Labs. They have some tests (which you can't order yourself online in NY) that many in this forum have found to be helpful. Unfortunately for me, he does not take my insurance at this time. But, he might be worth checking in to.
    Jonjay likes this.
  7. taniaaust1

    taniaaust1 Senior Member

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    Wow that's awesome that they found you had UARS and that bit was treatable.

    On reading your post about having diabetes1, UARS and high testosterone. It sounds like you may not have ME but rather some other illnesses not found yet too, I wonder if you could have dysautonomia causing your crashes when you are doing things. Note -ME often causes "low" testosterone in people. I suggest to get checked for the various kinds of dysautonomia to get that ruled out as that may cover the rest of your symptoms. I may of read somewhere that some forms of dysautonomia can be more common in diabetics so maybe you have got it coexisting with your diabetes. Make sure you get anything which can coexist with diabetes ruled out (even rarer stuff) and anything else which can be thought of before allowing yourself to be labled "CFS". As "CFS" is a waste basket of different illnesses.

    Once you've had everything which can be thought of ruled out and you have seen at least one ME/CFS specialist if without success of finding other fixable things, at that point you may need to consider going onto a disability pension seeing you cant support yourself (most ME/CFS specialists would help with that).

    Your high testosterone. If you have a longer then normal menstrational cycle, irregular periods or miss them at times, you should go and see a gyno, as you may have polycystic ovaluation syndrome (PCOS). (that would be another sign that your hormones are all out of wack, PCOS also puts one at a higher risk of some other things to)
    ahimsa and Jonjay like this.
  8. Kati

    Kati Patient in training

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    That is why, @Tania and Comet that I have recommended he seeks out expert advice, for proper diagnosis before embarking into all kind of self induced and doctor recommended protocols

    A proper diagnosis is key.
    Jonjay, beaker and SOC like this.
  9. Jonjay

    Jonjay

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    Wow. Thanks everybody! Well I know I need a proper Diagnosis, which of these groups of doctors will do that? And I actually emailed dr mazlen, he does accept my insurance. Will call monday. I have currently slept the weekend away.
  10. Kati

    Kati Patient in training

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    i don't know anything about Dr Mazlen myself, but Dr Enlander is one of the ME experts, and Dr Levine sits on a federal advisory committee for CFS,so they should know what to do.

    With ME, a lot of the testing is to rule out diseases that can cause fatigue. And then some of the closest biomarkers that we have are the natural killer cell function, and the 2 consecutive days exercise testing, which is primarily used for proof of disability.

    The ME experts will look for signs of immune activation and for suspect pathogens, like EBV, CMV, HHV-6, Parvovirus, mycoplasma and chlamydia pneumoniae, and Lyme disease.
    Jonjay and beaker like this.
  11. Misfit Toy

    Misfit Toy Senior Member

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    Dr. Levine would give you a proper diagnosis. I live about 2.5 hours away from you and my doctor would also diagnose you. He is closer to you than 2.5 hours and takes Medicare, not that you are on that, but he also takes several insurances. He deals with Genova tests and some great tests for mycoplasma, etc. HE is nowhere near as expensive. Enlander can be steep and a long wait, but he would also be able to diagnose you. He can also help with the 23&Me testing.

    Many of us here can totally relate to your sleep cycle. I go to sleep around the same time and sometimes later. I get up in the AM though because I don't sleep well. I could never do a CPAP machine, the noise and feeling would drive me nuts. I also fall asleep around 6 or 7 at night, wake up at 9 pm and watch TV. That's my nap. To normals; "Ok everyone, it's 7 pm and I am taking a nap." They would look at me like I am twisted!!

    You are not alone and so many of us go through this with our families. It's a sad state. I went through hell with my family and my brother and I don't talk because he can't accept my illness among the fact that he has so many issues that I can't accept. The stress of your family is not helping. That breaks my heart because gosh, I have been there.
    Jonjay likes this.
  12. Jonjay

    Jonjay

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    @misfit who is the doctor you see? I emailed doctor Levine to see if she accepts my insurance (united healthcare community plan) from what I read enlander doesn't? Accept insurance? I have no money, that won't work LOL
  13. ukxmrv

    ukxmrv Senior Member

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    What is your cortisol pattern?

    Just asking as I come from a family of night birds. I'm awake from roughly 10/11am until 2am each day. Had blood and saliva cortisol readings. Low in the morning and no where near normal until the evening. Some people are high at night and low in the morning. My symptoms if awake before 10am are shaking, fainting, nausea to vomiting, black spots in front of eyes.

    Also consider POTS
    Jonjay likes this.
  14. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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  15. Nielk

    Nielk

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    Enlander accepts Medicare.
  16. Jonjay

    Jonjay

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    Tried the 3 doctors in my "area" (mazlen, enlander & levine) non of them accept Medicaid / United Health care.

    Oh well. Met with an internal medicine doctor Tuesday and she listened (thank God, somebody who is compassionate, and not chalking this up to Depression) She ran some deeper testing so we'll see what the results yield. I am going to see an Allergist/Immunologist in an hour or so (why not) At this rate I am just going to every specialist I can to begin ruling crap out.

    I had a crazy episode I was in bed from Friday - Monday, and tuesday and wednesday I slowly have been feeling better. Today I am OK, out and about, but currently feel one of these 'spells' creeping on. I pray I can get through it and to the doctor. ugh
  17. RedLineBoy

    RedLineBoy

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    OP, have your doc check you for CMV, EBV, HHV6. I assure you one of these viral infection are cause of your CFS. Instead of provigil ask your doc for Nuvigil. It's a newer version of med. I take it and it works as needed bases.

    At this point there is not much you can do.
  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Jonjay

    I'd disagree that there isn't much you can do. If you establish a good relationship with your internist you can bring her ideas and research that you have found here and on other internet sites, get some good testing and work together on a treatment plan.

    Best wishes,
    Sushi
  19. Jonjay

    Jonjay

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    Found EBV antibodies currently at 140 (from last week)

    Now what.. :/ She doesn't know, for she says there is no real treatment.. But a great understanding lady, willing to help and listen. So if i bring attention somethings to her, I'm sure she'd be open
  20. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Which EBV antibodies--there are about 4 types? There are a lot of knowledgeable people here and many threads on treating viruses.

    Best,
    Sushi

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