Theory of the cause of CFS

Discussion in 'Fibromyalgia Main Forum' started by drjbreck, Oct 25, 2002.

  1. drjbreck

    drjbreck New Member

    I have been researching CFS and FM for quite some time and last night made a startling discovery. I've seen the typical symptoms in patients and was confused at the cause (like most people are). Recently I have been seeing a 20 year old male patient who I (and other doctors) diagnosed with CFS. His symptoms fit everything perfectly. He had EBV infection as well. I saw him yesterday and he told me he was using the herbal weight loss supplement ephedra for about 3 months prior to the onset of the illess. During the course of using it, he developed neck pain and swollen glands and fatigue. These were his first symptoms that lead to the diagnosis of CFS.

    I have really been thinking about this and I have come to the theory that epinephrine sensitivity is the CAUSE of chronic fatigue syndrome. It makes perfect sense, most people who suffer CFS suffer more during stressful times, or it was initially caused by a stressful event (even the flu - which could stress out the body - or did you perhaps take SUDAFED? which contains epehedrine.

    Beta-adrenergic hypersensitivity to epinephrine hormones in the body causes the body to be constantly fatigued producing the array of symptoms. EBV, mono etc are just opportunistic diseases, but not the root cause. It all fits together perfectly. I'm very excited about this discovery and am getting together with a few doctors to evaluate some other patients and there responses to some tests.

    I am conducting more research extensively on this subject. Please post all comments as I'm still formulating the theory and possible treatments.

    JLB
  2. drjbreck

    drjbreck New Member

    I have been researching CFS and FM for quite some time and last night made a startling discovery. I've seen the typical symptoms in patients and was confused at the cause (like most people are). Recently I have been seeing a 20 year old male patient who I (and other doctors) diagnosed with CFS. His symptoms fit everything perfectly. He had EBV infection as well. I saw him yesterday and he told me he was using the herbal weight loss supplement ephedra for about 3 months prior to the onset of the illess. During the course of using it, he developed neck pain and swollen glands and fatigue. These were his first symptoms that lead to the diagnosis of CFS.

    I have really been thinking about this and I have come to the theory that epinephrine sensitivity is the CAUSE of chronic fatigue syndrome. It makes perfect sense, most people who suffer CFS suffer more during stressful times, or it was initially caused by a stressful event (even the flu - which could stress out the body - or did you perhaps take SUDAFED? which contains epehedrine.

    Beta-adrenergic hypersensitivity to epinephrine hormones in the body causes the body to be constantly fatigued producing the array of symptoms. EBV, mono etc are just opportunistic diseases, but not the root cause. It all fits together perfectly. I'm very excited about this discovery and am getting together with a few doctors to evaluate some other patients and there responses to some tests.

    I am conducting more research extensively on this subject. Please post all comments as I'm still formulating the theory and possible treatments.

    JLB
  3. JaciBart

    JaciBart Member

    I have suffered from insomnia as a result of being rx'd benzo's for 12 yrs for anxiety, my doc kept telling me it was not addictive...........yeah right.

    I was raped 2.5 yrs ago, got herpes in the rape, my neck pain started right after that, I was seeing a chiro & that helped. At the time of all of that I was having a really hard time sleeping as I had just relocated across the state & my new doc would not rx benzo's.

    I was off of benzo's for a few months & I kept getting worse on my sleep problem, of course.

    I was taking sudafed, tylenol pm, sominex, etc, handfuls just trying to get some sleep.

    I did end up moving again due to the economy, my new doc then put me back on the benzo's for a while, then I sought help to get off of them. I found a very good psychiatrist to help, weaned off over about 6 months time, right about the end of all that my hubby had a horrible trauma, look under the trauma posts, got fibro on may 18.

    I have noticed adrenaline is a real problem, my body starts producing it as the result of anything minor & just keeps on.

    I have wondered about maybe going back on the benzo's, something to inhibit adrenaline I think would be very helpful, also I could probably sleep better.

    I also take zoloft which seems to make our brain work overtime, sensory overload I think they call it.

    I will be watching your posts, I am very interested.

    Jaci
  4. drjbreck

    drjbreck New Member

    Thanks for the response. Most CFS patients suffer from sleep disorders as well. This simply adds to my theory. The mediated hypotension theory is one that interests me as well because it could very well correlate to my theory.

    There are many other similarities I am looking into, far too many to count at this point. They just keep occuring to me.

    Question to all : What is the rates of neck pain / lymph gland pain or a "werid" feeling in your neck or any part of your body AND have you been diagnosed with EBV/ current/chronic (checked for current infection? not dormant). This neck pain could very well be a herpesvirus. You say you got herpes from your rape, then the neck pain, thats why I am asking.

    I have some supporting clinical research that may be of interest as well :

    (Edited by Moderator)

    A possible solution could be a alpha/beta blocker. Fascinating to say the least.

    JLB
    [This Message was Edited on 10/25/2002]
  5. JP

    JP New Member

    Hello JLB,

    Love to see "out of the box" thinkers. Welcome! Epinephrine sensitivity would be quite interesting to explore as a possible "root" cause. There is ample research with diabetes and epinephrine.

    I have not been well for sometime. I was diagnosed this July with FMS, Hashimoto's, and we are watching my positive ANA for other possibilities. My symptoms are quite strange to me. Just recently, I experienced a horrible, hour long, emergency room panic attack. Your theory would hold true for the onset of this attack. I have never had one and had no idea what was happening to my body. I had overexerted myself physically, pushed myself past my "known" limits and ended up with all the classic symptoms of someone with epinephrine sensitivity.

    Anyway, would love to help in your research.

    Jan
  6. sapphire

    sapphire New Member

    I find this very interesting. I have had CFS for 13 years and as far as I know I never had ephedra until 5 years after I got sick. However, my daughter was taking it when she got sick. She hasn't been diagnosed yet but she has alot of the same symptoms as I have. I also have FMS and I think she has it also and possibly CFS.
    I started taking this product for energy in 1994 and took it until early this year after I started having liver problems. Connection??? I think so.
    I have another interesting question for you or anyone else that wants to answer. Do you know anyone that was taking ephedra that died prematurely? I know 2 people. To me, that's really scary. One was only 32 and the other 45 (my sister). My sister died of a massive heart attack. She had never been sick and thought she was healthy. She had been taking this for at least 5 years. Her autopsy showed that her heart looked like a very old person.
    So many times I have wondered if there could be a connection in these 2 deaths and ephedra.
    Thank you Dr. Breck for your interest and research. Wish there were more Doctors like you around.

    Sapphire
  7. drjbreck

    drjbreck New Member

    Thanks for your replies. I'd like to remind everyone I'm not saying there is a direct connection between the consumption of ephedrine substances and CFS. What I am saying is for some reason, in CFS patients, there may be a hypersensitivity to epinephrine. This is our "flight or fight" response AKA adrenaline. The cause COULD be ingesting a prosecuter of epinephrine, but most people here have never even ingested ephedra or sudafed. What I am saying is the hypersensivity could have been caused by extended periods of epinephrine release in the body (due to stress responses or perhaps illnesses). During this time, the body become hypersensitive to the hormone that is naturally produced in the body. When released in normal amounts, you become fatigued and tired and the immune system goes crazy etc... Opportunisitic diseases take advantage of the stress at this time. In effect its like a prolonged adrenaline fatigue, EVEN at the normal amount (because you are hypersensitive). This could be highly related and go along with NMH as well.

    Do most people feel the worse at night or morning?

    Has anyone with CFS here ever tried alpha or beta blockers? I'd like to see if there is a lessening of symptoms. Also, has anyone ever used ephedra or energy (or sudafed for colds etc...) during the course of there CFS illness? If so, has it affected symptoms?

    Yohimbine Herb (common for male sexual drive) is theorized to prevent the increase of beta-adrenergic hypersensitivity to epinephrine. It could be interesting to see if symptoms improve upon usage of it.

    Thanks
  8. drjbreck

    drjbreck New Member

    I would post links to my research and sources, but I guess it is not allowed here which is understandable. There are people who will try to take advantage of an illness and I'm glad to see it is moderated here.

    My research..

    Addison's Disease AKA adrenal gland failure.

    There is a direct link between adrenal's and CFS. Not failure, but as you read on you will see what I am getting at. The correlations are quite incredible.

    (I've asterixed some important points w/comments)

    Addison's disease is a rare endocrine, or hormonal disorder that affects about 1 in 100,000 people. It occurs in all age groups and afflicts men and women equally. The disease is characterized by weight loss, muscle weakness, fatigue, low blood pressure, and sometimes darkening of the skin in both exposed and nonexposed parts of the body.

    Addison's disease occurs when the adrenal glands do not produce enough of the hormone cortisol and in some cases, the hormone aldosterone. For this reason, the disease is sometimes called chronic adrenal insufficiency, or hypocortisolism.

    Cortisol is normally produced by the adrenal glands, located just above the kidneys. It belongs to a class of hormones called glucocorticoids, which affect almost every organ and tissue in the body. Scientists think that cortisol has possibly hundreds of effects in the body.

    *Cortisol's most important job is to help the body respond to stress. Among its other vital tasks, cortisol:*

    'who with CFS isn't stressed?"

    *helps maintain blood pressure and cardiovascular function*

    'Wow , what can I say here. NMH anyone?'

    *helps slow the immune system's inflammatory response*

    'Wow again. Inflammatory responses in CFS patients are much higher than normal. Chronic EBV etc.... There is some research indicating that pain is caused by inflammatory responses. FM anyone?'

    *helps balance the effects of insulin in breaking down sugar for energy*

    'diabetes and epinephrine have a long history. I can't provide links here but try searching on this one. The correlations are literally astounding.'

    *helps regulate the metabolism of proteins, carbohydrates, and fats.*

    'and a lot of CFS patients have messed up metabolism, too*

    Because cortisol is so vital to health, the amount of cortisol produced by the adrenals is precisely balanced. Like many other hormones, cortisol is regulated by the brain's hypothalamus and the pituitary gland, a bean-sized organ at the base of the brain. First, the hypothalamus sends "releasing hormones" to the pituitary gland. The pituitary responds by secreting other hormones that regulate growth, thyroid and adrenal function, and sex hormones such as estrogen and testosterone. One of the pituitary's main functions is to secrete ACTH (adrenocorticotropin), a hormone that stimulates the adrenal glands. When the adrenals receive the pituitary's signal in the form of ACTH, they respond by producing cortisol. Completing the cycle, cortisol then signals the pituitary to lower secretion of ACTH.

    Aldosterone belongs to a class of hormones called mineralocorticoids, also produced by the adrenal glands. It helps maintain blood pressure and water and salt balance in the body by helping the kidney retain sodium and excrete potassium.

    *When aldosterone production falls too low, the kidneys are not able to regulate salt and water balance, causing blood volume and blood pressure to drop.*

    'ALSO KNOWN AS - Neurally Mediated Hypotension!!!!!!! (very common in CFS patients)'

    Does anyone see the pattern?

    JLB


  9. drjbreck

    drjbreck New Member

    and this is exactly why products such as Licorice Root have been said to help with CFS. They block the breakdown of cortisol in the liver, allowing more to remain in the body. This helps balance the adrenals.

    Anyone that has used licorice root with success?

    JLB
  10. herekitty

    herekitty New Member

    My CFIDS/FM began after three consecutive illnesses - the flu, followed by bronchitis, followed by active EBV. Prior to these illnesses, I had gone for a period of 20 years without even having a cold. To this day, I have only had the flu four times in my life, and I am past 40. I had no history of ephedra use, as I already knew my heart was too sensitive to it. I have been on beta blockers on and off for the last three years (the current "on" is since last February) for tachycardia. I was able to stop them for a period of 9 months. Other than diminished heart problems, fewer acute headaches, and reduction in intention tremor, I have noticed no change in my symptoms whether or not I am using beta blockers.
    Kitty =^..^=
  11. stillafreemind

    stillafreemind New Member

    some things really kinda ring true here for me. I have literally had this since I was six or seven..I ma almost 50 now. I can only remember having stomach flu once..when I was a kid. In my late 20s I had about three rounds of bronchitis and since then I have had one cold. For this cold..I did something I NEVER do..I took a Sudafed..thought I was going to die. I had lights flashing with my eyes open and shut..and thought my heart was coming out through my chest.

    Also interesting..I had a real long break of actually feeling VERY good. I was supposed to have a hystorectomy for one very large fibroid and many small ones...well, weenie me..I decided to try and do something alternatively..Hang with me here..I took choline, Inositol and l metheoine..My symptoms were non existant at that time..I was taking other supps too..but these three things are the only thing that I took then and am not taking now..as my fibroids..Praise to God .. have been doing quite well and are shrinking enough not to bother me very much.

    I am so intersted in this thread and I thank you from the bottom of my heart for posting it....stillafreemind

    I think I may feel better later in the day now. I used to feel my best early and I mean early in the morning.

    I hate to say this..but something else came to mind. I used to drink..in spirts. I always drank whiskey..do not laugh but..when I was in a drinking mode..I never suffered these symptoms as bad..whenever I stopped drinking..I always get worse. Is there something in the alcohol that suppresses the symptoms? (I know I am setting myself up for many a joke here!) I am very curious..as the last time I was drinking I was scooping a ton and a half of feed every morning..taking care of outside hogs (2000 head) which included giving vaccinations etc. Needless to say, I was not drinking during the day ..but my symptoms were still mostly gone. And other than being tired from the very physical job..I cannot say that I even suffered from fatigue. Just curious and hope I have not taken up too much of your time.[This Message was Edited on 10/26/2002]
  12. JP

    JP New Member

    Hello again,

    Wow, my head spins. I am still back on the questions from your first post.

    From the titles of your research, it appears that you are an endo doc? I have a good friend with Addison's. Also, do you see CFS and FMS as one in the same? My Rheumatoligist diagnosed me with FMS a few months ago. I also have widespread osteoarthritis, somewhat elevated ANA (1:320 speckled) and an elevated SED. My thyroid is causing me troubles too as a result of the autoimmune disease.

    My last bout of PTSD seems to be a marker of fast decline in my health. One of my employees made some very serious postal threats during a lay off. This individual was unstable and had an arsenal at home. In the past, I could have handled it and moved on. I have always had a stoic, can do all kind of persona. I have lived with chronic back pain all of my life and I finally acknowledged this fact shortly after the postal episode. When I did reach out for help, I discovered that the injuries to my back and birth defects were quite serious.

    I have not worked for 10 months now. I left my career due to my symptoms and did tell my manager why I was leaving. I had chronic insonmia, chronic pain and I could no longer hide the affects of the stress.

    Oh, by the way...mornings are hell. I get better as the day unfolds. I also start my day with 50mg of Vioxx and pain medication.

    Thanks for your work and your posts.

    Best Regards,
    Jan
  13. kay

    kay New Member

    CFS FM HYPO THYROID AND CHRONIC EBV. MY PAIN IS WORSE IN THE MORNING. mY NECK AND SHOULDERS HAVE ALWAYS BEEN MY WORSE AREAS. MY NECK EVEN HURTS TO TURN TO FROM SIDE TO SIDE, UP AND DOWN.MY HIP JOINTS HURT AND DOWN MY LEGS(MUSCLES). I HAD GOTTON THE FLU SHOT AND WAS SICK FOR TWO WEEKS AFTER THAT, ALSO. DEATHLY SICK. LAST SUMMER I ENDED UP GOING TO E.R. WITH SPOTS ALL OVER ME. I HAD THE WORST HEADACHE AND MY SHOULDERS HURT SOOOO BAD. I FELT SICK TO MY STOMACH. THE DOCTOR THOUGHT I HAD ROCKEY MOUNTAIN SPOTTED FEVER, GAVE ME SOME PAIN PILLS, AND DOXYCYCLINE AND TOLD ME TO SEE MY DOCTOR ON MONDAY. I DID AND HE CHECKED ME FOR LYMES AND TESTED NEG.WELL THIS LAST WEEK THE SAME THING HAPPENED. I STILL TESTED NEG. FOR LYMES. I HAVE TAKEN SUDAFED BUT HAVEN'T FOR A FEW YEARS. I DONT REALLY KNOW WHAT HAS EPHEDRINE IN IT BUT AM GOING CHECK IT OUT AND SEE WHAT ALL I HAVE TAKEN IN THE PAST THAT MAY HAVE HAD EPHEDRINE IN IT. THANK YOU - LINDA, we need you cloned ha!!!
  14. beh43

    beh43 New Member

    drjbreck,

    I tend to agree. The only relief I have gotten from many symptoms is by using the beta blocker Atenolol.

    I hope you can get the doctors to look into your theory. My husband keeps saying that people are looking too hard and something simple will be found to be the cause of CFS.

    I wish you luck in your efforts to find a cause and hopefully cure for this DD.

    beh

    Sudden onset after taking antibiotics. Previous to that 2 MVAs. Neck pain, EBV, hypercoag., NMH, OI, POTS, abnormal MRI right frontal, worse symptoms AM. Took sudafed for allergy/sinus problems. Haven't had a virus etc. for years since diagnosed in '92. OI diagnosed at Vanderbilt by Dr. David Robertson. Atenolol stopped rapid heart rate but other symptoms remain. I now use a scooter to get around. Even a small amount of erect posture causes symptoms.
    [This Message was Edited on 10/26/2002]
  15. leann_sweeney

    leann_sweeney New Member

    I have taken MUCHO sudafed in my life, mainly beause of the constant sinus problems I suffered after moving to the allergy capitol of the world on the Texas Gulf Coast. But it has been quite a while since I have taken any regularly, but for years I took it every day, though lately I have been taking it intermittently because of the wonderful sinus infection I have right now. Should I NOT take it, Dr. Beck?
  16. JaciBart

    JaciBart Member

    You have come on here and it seems you have instantly gotten everyone's trust, that is hard to do. We are a skeptical bunch because usually when someone says they know the cause or the cure we all go "yeah right, go peddle your snake oil somewhere else"

    My neck is by far my worst.

    Viruses live in the neck, right?

    Morning are hell.

    My herpes did seem to start it all, I am having an outbreak right now that is 5 days into it and the famvir is not even touching it, I got my first migrane yesterday, it keeps trying to come back.

    Adrenaline is definitely not our friend, licorice root and yohimbe huh???

    Could you do us a favor and post a new thread with a few important supplements and what exactly they do and the dosage info anad I for one will try it, I would bet others will, I am sure a lot of us would be more than happy to be your guinea pigs, we have all been traying for an answer.

    Regarding your research you can direct us all to it by telling us what exact words to type in a search engine.

    Jaci
  17. Mikie

    Mikie Moderator

    It is possible that our sensitivities cause our illnesses, but it is just as possible that our illnesses cause our sensitivites. In either case, there is some pretty strong evidence for a genetic predisposition and/or an infectious agent at work in our illnesses. My Mom had FMS, I have both FMS and CFS, and both my daughters have FMS.

    I think your research may well lead to some answers, but our illnesses are so complex, that I doubt "the answer" will be that simple. In any case, bless you for all your efforts.

    Love, Mikie
  18. teach6

    teach6 New Member

    I was dx'd less than a year ago with CFS, NMH, and FM. I had been experiencing increasingly worse symptoms for at least 16 years, perhaps longer.

    Stress was what pushed me over the edge finally. Moving myself and my mother into a new home together after selling both our homes and in the middle of all that having one of my sons turn up on my doorstep psychotic with an eventual bipolar dx.

    I do know that I have been unable to take Sudafed for more than 15 years, but I had been told that was due to my hypothyroidism. That was dx'd in 1986 when one of my docs found a nodule on my thyroid.

    In 1999 I was dx'd with what has been called glucose intolerance, Diabetes, and latent diabetes, depending on whom you ask. I have been able to control it through diet.

    When my health began to deteriorate the last time, in the spring of 2001 one of my symptoms was increased anxiety. My psychiatrist at the time put me on Effexor, which I told him seemed to increase my anxiety. He told me that was "impossible" and added another rx for Buspar. Finally I was able to get off the Effexor and Buspar and am now on Zoloft for situational depression.

    As I said, I find your comments fascinating because they seem to mirror my own illness. I am currently on ProAmatine, Toprol, and Florinef for my NMH. They have helped improve my condition so I can actually sit up most of the day and can walk short distances. I use a scooter for longer distances.

    My doc has tried several CNS stimulants on me, but they do not allow me to nap in the afternoon, which I find essential for maintaining my health at optimum level. I have tried Ritalin, Adderall, Dextra(?), and now have a new rx for Provigil. In addition I take Klonopin and Trazadone for sleep, Ultram 4 times daily for pain, Neuronotin and Flexeril for pain and sleep at night.

    Thanks so much for sharing with us.

    Barbara

  19. sb439

    sb439 New Member

    Hi JLB,

    I never took sudafed or ephedrine before I got CFIDS.

    I am highly sensitive to sudafed (as sold in the UK): taking a whole pill in the morning (I did this only twice!) gives me (a) a splitting headache for hours, (b) keeps me awake the entire night. On the other hand, in the beginning stages of my CFIDS, when I was tired, I found that taking 1/8 or 1/16 of a pill (yes, pill-cutters) would be an antidote to my fatigue for a few hours.

    I did this for a while, then found terfenadine, where 1/2 pill had the same effect (just to give you another medication that may be of interest), until they took it off the over the counter market.

    Licorice: after I got rather ill 5 years into CFIDS (stress-related), I read up on the web, and put myself on 2-3 grams licorice per day, as I had symptoms that seemed very clearly adrenal insufficiency. It got me from being entirely incapable from taking any stress (e.g. an ordinary 2 minute phonecall) to being just, ahem, hypersensitive to stress within a month or two, with some slight further improvements over the last 13 months - I've taken it continuously (monitoring my potassium, every six months).

    I hope you don't draw rash conclusions from your research but keep the complexity of the picture in mind. E.g. not everyone with CFIDS I know who has the typical CFIDS brain (QEEG wise) also has low cortisol. Good luck in any case.

    Also would be nice if you filled in your BIO, just a tiny little bit? e.g. would be nice to know if you suffer from CFIDS or FMS.

    Susanne


    [This Message was Edited on 10/26/2002]
  20. lucky

    lucky New Member

    Having CFS/FMS for more than 15 yrs., I honestly can say that I never took any ephreda in my life - and although I am not a doctor, but I believe that the onset of CFS, FMS or both, which quite a few of us on this board have, are still of a great debate among researchers. And, until they all agree on what these illnesses are caused by, the guessing game will continue.
    In my case and according to my doctor, the cause of CFS/FMS most likely is viral after an EBV infection and/or other ongoing viruses.
    Lucky