I beg someone to help me

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by simplespot, Aug 9, 2013.

  1. simplespot

    simplespot Member

    I've pretty much exhausted everything so I am asking anyone if they can listen to my story and see if I missed anything -- I am NOT a typical CFS case or so my doc says and I explain why in my symptoms paragraph below -- that's why im so scared and lost. I cant keep living like this and not at least head in the right direction. I wont bore you with emotions just facts. If you know anything or can suggest anything I'd be so grateful to hear it.

    Age: 29 Male

    My symptoms

    Have
    - Extreme fatigue everyday - crash at 3-5pm, take a nap ,wake up so tired and complete my day
    - Memory issues
    - Since sick I only have daily temp of up to 96 degrees, I always used to be 98.3

    Don't Have
    - Never sore throats ever (not even once or even a tingle)
    - No pain ever
    - No swollen lymph nodes.
    - No post extertional malaise (but I don't even have the energy to do exercise anyway).
    - No fevers ever
    - Flu like symptoms

    My quick story

    2012
    1. Under a lot of stress (and fearful person), seemed like one day I had to go sleep in the mid afternoon from exhaustion, that never went away until today..... and its unreal the daily exhaustion just UNREAL!
    2. Brain MRI - Nothing wrong
    3. Sent me to a psychiatrist and took Prozac, made me even more tired, didn't help.
    4. I went to a sleep medicine doctor thinking it was narcolepsy... tested for a sleep study and narcolepsy, doc was not convinced i didn't have narcolepsy and I never fall asleep but he mentioned words Ill never forgot "alpha wave intrusion, people with fibromylaga get it"...
    5. Went to my first CFS doctor, ran every test known to man, all came back OK except my NK natural killer cells were low, she is the one who said im not a classic case.
    6. Went to witch doctors who gave me every vitamin in the world, coq10, d-ribose, you name it, nothing helped.
    7. Got tested for Lyme, came back negative (lived in Miami for the last 8 years)
    8. Went to dentist said I didn't have amalgams in my teeth (but I am curious about "cavitations" that I want to explore more).
    9. This month I went to another doctor and she measured my daily cortisol 4 times, this was the first test after the NK (natural killer) test that came back abnormal. See image for my results. My morning and noon cortisol was SKY high (46 and 19) and then dropped to normal in the afternoon and night. Adrenal failure? She put me on adrenal calming stuff for the morning and the noon, been on it for 2 weeks nothing changed, im even more tired then before. She explained that my body was running a marathon in the mornings and obviously shuts down in the afternoon from being tired, weird because I cant even run 10 feet. My DHEA was fine whatever that means.
    [​IMG]

    If I had the sore throats, the flu like symptoms Id say ok CFS.. and I know CFS varies in everyone but absolutely nothing I have done with vitamins, voodoo from garbage docotors, anti-depresants, or even praying affects my symptoms. Nothing I have done short term or long term as made me feel better, not even a little.

    This is where I am at right now, I cant work, cant find a wife, I'm in the dumps... does anyone know anything I missed?

    Thank you and much love to everyone here :)

    Matthew

    Attached Files:

  2. IanH

    IanH Active Member

    Hi Matthew,

    You say " No post extertional malaise (but I don't even have the energy to do exercise anyway)."
    So you would not know if you have PEM. You would need a VO2max test in a exercise clinic.
    What is your BP? Is it stable or labile?
    Do you have POTS? particularly tachycardia when you lie down?
    Has your heart profile been tested properly? What is your PQR interval?
    What is your HV titre like, particularly EBV and HHV6?
    What are your muscle lactate and glutamate levels?

    Without these measures it is impossible to say whether you have ME or something else.

    You say you are under a lot of stress. What stress? How does it affect you? Is it affecting your sleep?

    Some people have slow developing ME, without the sudden onset. It can take many months to develop. Swollen lymph nodes and sore throats are not definitive for ME.
  3. Mikie

    Mikie Moderator

    I think one of the most common misconceptions is that everyone with CFIDS/ME fits a set of criteria. No one knows what causes our illnesses but we have identified some of the things which can trigger them. Stress and abnormal cortisol levels are common among some of us. I believe there are many subsets of us with these illnesses.

    My approach has always been to treat the worst symptom and then go on to the next-worst symptom. Stress is one of the worst things for us but with some of us, our bodies are always in the "fight or flight" mode.

    Ian always has great info and insights. I'm glad you found us. This board is a wealth of info. You can do some research on your own as well. We have a library here with a search feature. It is disguised as, Supplement News, at the top of the page.

    Finally, don't panic and don't give up. It can take time to find the tests to help with diagnoses and to find treatments to help. Never ever give up and believe you will heal. Best of luck to you.

    Love, Mikie
  4. simplespot

    simplespot Member

    Hi Ian
    An answer those questions.....

    1. On days when im not completely wiped out I challenge myself and walk and walk forever, sometimes miles, I'm still tired but right after, or a day after, or two days after I dont crash. For me the fatigue always there just a little different every day and daily at 3-5pm I'm just so tired I need to rest for an hour. Never did a VO2max.
    2. My BP is a tiny bit high on both Systolic and Diastolic, not labile.
    3. No POTS or tachycardia
    4. Done many EQG's and I sometimes get Left anterior fascicular block and doc always says normal and I had that before the fatigue started and I have Mital Valve Prolapse.
    5. My CFS doctor said I only have HHV6 a little high
    6. I dont know my muscle lactate or glutamate levels?

    I was hoping by getting my cortisol level down in the morning I would be healed.
    Thank you so much.
  5. simplespot

    simplespot Member

    Thank you Mike for the welcome! I wont definitely not give up :)
  6. mbofov

    mbofov Member


    Matthew - It really does sound like your adrenals are involved, probably weak from stress. Many years ago I was weak as a kitten and no doctor could help me. I stumbled across a chiropractor who does muscle testing and he found my weak adrenals in five minutes. He gave me an adrenal glandular product by Standard Process called Drenatrophin PMG. They also make a good one called Drenamin. I had to start on a high dose, about 3 or 4 times the regular dose, but within a couple of days my energy started to come back. I think I probably would have ended up bedridden without this. I took the Drenatrophin for several months and was able to gradually back off. I still take a small maintenance dose - my adrenals are my Achilles heel. I had suffered from severe chronic stress for many years before this happened.

    It sounds like the calming stuff your doctor gave you was to lower cortisol, which, if it lowers it too much, will make you tired.

    Anyways, I strongly recommend you look into adrenal glandulars. They helped me so much. Also, learning to deal with stress (meditation is excellent for this, and counseling if necessary), go easy on sugar, caffeine and alcohol which are all hard on the adrenals. And extra pantothenic acid, one of the B vitamins, is crucial for adrenal health. This should be taken together with a good B vitamin complex. They are coenzymated B complexes which are better absorbed than the regular ones. And brewers yeast is an excellent source of the Bs.

    If you want to find a chiro who does muscle testing, you can go to the Standard Process website and their customer service will give you names of the practitioenrs in your area who use their products. You can also just go to the yellow pages and call and find out.

    Good luck!

    Mary
  7. mbofov

    mbofov Member

    Matthew - a couple more things to consider - I do have post-exertional malaise - it's unmistakable and completely different than adrenal fatigue. Adrenal fatigue for me was a generalized overall weakness and fatigue which was greatly helped by Drenatrophin. With adrenal fatigue, I did not have the energy to do much of anything.

    Post-exertional malaise, however, always hits me some 20 hours after I overdo it (exceed my 3-1/2 hours of light activity). It is a bone-crushing fatigue which used to last 3 days for me and during which time I could not do anything. If I attempted to do anything (e.g., the dishes) during PEM, it would only get worse. PEM will hit regardless of my energy level. Overall my energy levels are much better than they used to be due to several things. So even if I have a good day where I feel well, I am still limited to my 3-1/2 hours - otherwise I crash the next day.

    One more thing you should check out is your MCV level on your CBC (complete blood count generally done annually). If your number is high-normal - in the normal range but near the top- you most likely have a B12 or folate (not folic aid) deficiency. My MCV was high-normal for many years, no doctor said a word till one finally mentioned it might be a problem (after years of this). Turns out I was deficient in folate which causes macrocytic anemia and fatigue. I had already been taking B12 for many years. So I started taking Solgar folate in the form of Metafolin, a biologically active form of folate, in addition to the B12 I was already taking, and my energy started to pick up within a couple of days. This ended up causing an increased need for potassium, which I cannot overstate. Anyways, ever since I have had more "normal" days - feeling well - though still have that damn PEM to contend with. And I have supplemented with 400 mg. of potassium daily ever since. I used to get symptoms of low potassium (horrible fatigue and lethargy) only I didn't know what it was until I started the folate - thought it was just another weird CFS symptom.

    Folic acid is a synthetic form of folate which many people have difficulty converting into a form useable by the body. Folic acid can actually cause a folate deficiency because it competes for absorption with folate. And unfortunately folic acid is added to many foods.

    Mary
  8. simplespot

    simplespot Member

    Mary,

    Firstly thank you very much for taking the time to help me.

    Since recieving the cortisol test results I want to believe my sickness stems directly from the chronic stress as well.

    I am definitely going to check on the andrenal glandulars and the MCV leves, I just got a cbc done last week actually.

    Regarding the adrenals..... as you can see in the picture of my results, mine are very high in the morning... does the supplement your chiropractor gave you reduce or increase cortisol? I need it reduce mine.

    Get back to you on the MCV when I check it tom!

    Thanks!
  9. mbofov

    mbofov Member

    Matthew - from what I understand, adrenal glandulars like Drenatrophin support the adrenals and help them to heal. I don't think they specifically raise or lower cortisol. I know my cortisol was high when I started Drenatrophin because the chiro told me I was catabolic - high cortisol will cause your body to start using muscle for fuel, not a good situation. Anyways, as I said above, the drenatrophin increased my energy noticeably within a couple of days. It was great.

    My cortisol does tend to run high (unlike many people with CFS who have low cortisol). I've taken Seriphos (phosphorylated serine) for high cortisol and it works great. Several years ago I started with a rather high dose of 8 capsules a day (after working up to that amount) and found it worked best when I took it in the morning - 4 capsules before breakfast and four before lunch, on empty stomach.

    After being on that dose of Seriphos for a couple of months, I noticed I was getting extra tired and realized my cortisol was going too low and cut back. I'm now taking 2 capsules a day as a maintenance dose.

    I don't know what your doctor gave you for high cortisol. Anyways, in my experience the glandular did not lower or raise my cortisol but it definitely supported my adrenals. Weak adrenals cause severe fatigue. And then the Seriphos got my cortisol levels under control.

    I also meditate daily etc. Meditation is great!

    Mary
  10. Nanie46

    Nanie46 Moderator

    Hi Matthew,

    Welcome to ProHealth!

    I wanted to say that it is still possible that you could have Lyme (Borrelia burgdorferi) or another strain of Borrelia that would cause similar symptoms but would not technically be called Lyme and would not show up on a Lyme test. You could also have one or more other vector-borne infection(s) such as Bartonella, Babesia, Ehrlichia, Protomyxzoa Rheumatica, etc.

    Lyme testing is very unreliable. Many people with Lyme have only ever tested negative. There are many reasons why a Lyme test can be negative, yet a person has Lyme.

    Your low temp reminds me of how Lyme does that...lowers a person's body temp. Lyme can also cause extreme fatigue and memory issues.

    I have Lyme (treated for 3 yrs) and I did not get fevers, or flu-like symptoms except for the initial infection, which I was told was a virus. It was weeks and months later that I developed other symptoms, so Dr's did not relate any of those symptoms to the flu-like illness months earlier.

    When you say you never, not even once, had a sore throat and you never had a fever, do you mean you never had those symptoms since the day your exhaustion first started?

    Here is some Lyme info for you to read. Lyme affects people differently. Some people have no pain. Lyme is found in FL, although many Dr's wrongly deny that it does.

    The second link has info about other tick-borne diseases also.

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


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


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


    Perhaps the Lyme Culture test would be beneficial, since it does not rely on an antibody response:

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


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

    simplespot Member

    @mbofov

    Hi Mary! So I have both adrenacalm and seriphos and thinking taking both?

    Someone told me that its very common to have the high cortisol or low and that just seing one result of the cortisol spit test isnt accurate as it will change... obvouisly that freaks me out.. any thoughts?

    Also can you tell me how you meditated? I have the worst ADD and its going to be hard but I need it!

    Thank you
  12. simplespot

    simplespot Member

    @Nanie46
    Thank you for the insight!

    Ok so im with you on the getting the real Lyme panel out the way... how should I proceed with Advanced Lab?
  13. Nanie46

    Nanie46 Moderator

    simplespot,

    In the last 2 links in my message above, it gives info about the test.

    In the first link about Advanced Labs it says that the test kit and test must be ordered by a Medical Professional who is licensed to practice in PA....an MD, DO, PA-C or CRNP....not a Naturopathic Dr.

    The Dr must also order the test kit which has an overnight Fedex mailer.

    It says the patient must pay for the test, $595 by check or credit card and it may be partially reimbursed by insurance, but I think you will have to send it in and see.

    In the 2nd link is a place to click on so the Medical Provider can order the test kit.

    The blood must be drawn on a Monday, Tues, Wed or Thursday only and sent out the SAME day via overnight Fedex. The lab is not open on the weekend.

    I recommend going to the links and reading about the test and lab.

    You can write down the web address for your Dr, or email it to them.

    If your Dr can read the info, he will be more likely to understand how this test is different than an antibody test, and hopefully will order the kit and the test for you.

    Be sure to check with the lab where you would get your blood drawn to make sure that the blood can be sent same day to Advanced Labs.

    I am sure that Advanced Labs will include paperwork (like Igenex does) that the Dr will have to fill out to order the test....just read everything and follow the instructions.
    msbsgblue likes this.
  14. mbofov

    mbofov Member

    Hi Matthew - I just looked up adrenacalm and it sounds okay, I've never used it. LIke I said, I did take Seriphos and it was great for lowering my cortisol. It is possible that the two of these together might make you tired but I just don't know. I guess it would take some experimentation - if I were going to experiment, I would try the Seriphos alone first, as it works so well. HOw much Seriphos are you taking, and at what time of day?

    I found the adrenal stress index test (spit test) to be very good, because it takes readings 4 times during the day/evening. Most doctors just order a blood test, which only shows you cortisol readings at one time, so you have no idea how they fluctuate. I believe the spit test is the most accurate and gives the most information, so don't worry about it. After you've been on Seriphos for awhile, your numbers will change and that's a good thing and they can retest you maybe after a couple of months.

    For meditation, I found an easy way to get started is from a book called The Relaxation Response, by Dr. Herbert Benson. It's an old book, an easy read and very interesting too, and he gives a very simple technique for getting started.

    Also, I still strongly recommend you look into adrenal glandulars. They are what gave me my energy back. I also strongly recommend chiropractors who do muscle testing. I've been several, and 1 or 2 were not that good but most are. And the proof was in the pudding - if they were able to help me or not. They also helped me with several digestive problems which were never diagnosed by the doctors, even though I was having symptoms. I cannot say enough good things about muscle testing when done by a knowledgable practitioner.

    Good luck!

    Mary
  15. simplespot

    simplespot Member

    Hi Mary
    I think you are right im going to just do the seriphos. Dosing is an issue for me, I have no idea how many to take. Can you suggest? According to my graph I should take it from 6am to 3pm ...

    how long did it take you to kick in? Im more exchausted now then before since using it! does that go away?

    Just bought The Relaxation Response than you!

    ok so the adrenal glandulars --- I thought I had to go to a endocrinologist for that? where can i find a chiropractor that does adrenal glandular's and muscle testing?
  16. mbofov

    mbofov Member

    Hi Matthew - I had to experiment to get the right dose of Seriphos. From literature I read and my own experience, I found the best time to take it was in the morning. I ended up taking 8 capsules a day (four 1/2 an hour before breakfast and 4 half an hour before lunch). That's sort of a high dose. I think I started lower and just worked up to that. I had high cortisol at night which gave me severe insomnia and this helped almost immediately. I also just felt calmer during day, but not drugged or tired. So I don't know why you are more tired - it could be you're taking too much, it could be because of the adrenacalm (sp?) you're taking, I just don't know.

    And it could also be that your adrenals are just wiped out.

    I've never seen an endocrinologist and I don't think they give adrenal glandulars. To find a chiropractor who does muscle testing (sometime called kinesiology), I have 2 suggestions: one is to go through the phone book, check the ads and ones that talk about nutritional testing, etc. are more likely to do this. You can also go to the Standard Process website and get their customer service number and call them, and they will give you the names of practitioners in your area who use their products. And those practitioners generally do muscle testing.

    If you talk to a doctor about muscle testing, they will probably laugh at you or try to discourage you. I first saw a chiro who did this after I'd been sick for some 7 years with no help from doctors and out of desperation saw the chiropractor - I had nothing to lose but $50 so I didn't care what anyone thought. And he ended up helping me so much, I felt so grateful to have found him. So that's my spiel. Good ones can also help determine the proper dosage of supplements you take.

    Good luck, Matthew -

    Mary
  17. simplespot

    simplespot Member

    Hi Mary.
    How come you took the seriphos in the morning and noon if your cortisol was high night? I was told to take it in the morning beacuse my cortisol is high then.

    what brand glandulars do you use?
  18. mbofov

    mbofov Member

    Matthew - I was originally told to take the Seriphos at night, and when I did so, felt horrible, cannot describe it, and it did not help me sleep at all. So on my own initiative I switched to the morning and it was completely different, no bad side effects and it helped with sleep at night. I later read an article that stated that due to our circadian rhythms, Seriphos was best taken in the morning. I cannot give you the chemistry or tell you how it works this way - all I know is that it worked very well.

    There are several good brands of adrenal glandulars. Standard Process is a very well known company with good products and I've used theirs a lot, they make two: Drenatrophin PMG and Drenamin and I've used both. I'm not sure what the difference is between the two, they both worked well for me. You can take an adrenal glandular on your own, but I highly recommend finding someone who does muscle testing. They can check for all sorts of things, and also help you get the right dose. I think it could be hard to do on your own when you've never taken this before. When I first took Drenatrophin, muscle testing indicated that I should take 3 or 4 times the recommended dose because my adrenals were so weak. Well, without the muscle testing, I probably would have just tried the recommended dose on the bottle and gotten very poor results and not continued with it. And the muscle testing picked up on other problems which the doctors were not aware of.

    Mary
  19. Soul*

    Soul* Active Member

    I have ME/CFS and have had the low temperature for years too and not being able to have a fever. I don't have lyme or FM. I was leading a very rewarding and fulfilling life the time I got ill and was where I wanted to be in life so stress wasn't involved for me. I've also been screened by a psychiatrist to see if there could be any psychological factors responsible for the developing of this disease and they ruled that out for me. I do also recognize not having any noticeable benefit from food supplements and any sort of medicine or treatment or therapy, it did bring my health down more. I tried for over 10 years and still every now and then try things out to see if my situation has changed. Ultimately pacing is what works best for me. I was already meditating when I got ill and that has helped me a lot to stay mentally stable despite of the effect of health having also on our emotional state. It has helped me to see clearly what part of my emotions is simply part of being ill and so I shouldn't worry about but just take rest and what part is actually due to me not having the right mindset and needs attention. One advise I can give is don't wait for a miracle to happen before taking control of your life and happiness again. Find different ways to be happy, within your present ability and don't make it dependent on your health, available energy, a relationship or any other external factors. They won't provide you the stable basis you need to stay at least mentally on top of things. Go with what you got until you get what you want. When I look at myself the biggest factor for stress is comparison and unrealistic expectations. Learning to find my inner value and express that in whatever I AM still able to do has laid a very nice new and solid foundation for happiness and meditation has allowed me to connect to that inner treasurestore and strengthen it. Only you know best what will fit you and though everyone else's advice can help you find ways you might not have thought of yet, to me personally following others advise, with the high hopes of it working for me too, has only worn me out more and lead to dissappointment. Take time to really listen to what clicks for you, not from a hopeless point of view grasping on to everything you can get but from an inner knowing what might help you out. Wishing you lots of strenght and inner wisdom on your journey to recovery, even if recovery only means learning to deal with your present situation that will be a huge thing too. I believe that what limits us doesn't actually limit us but makes us unlimited because it gives us an opportunity to revalue ourselves and find a REAL sense of SELF respect. Like what Mandela did when he was imprisoned. That is not found in the 'human doing' but in the 'human BEING'. The being in the human, the soul in the body, the real I. That's what real I sation is all about ;) Take plenty of rest, what I never knew when I got ill is that the first two years can make all the difference in being able to recover if you take plenty of rest instead of keep pushing yourself. Not easy but very well worth the try!

    Welcome aboard Matthew, wishing you well! I'm sure you will find a way through this all.
  20. searchinferu

    searchinferu Member

    Simplespot,

    I'm new here and won't bore you with my details, except that I am currently undiagnosed officially and trying to keep it that way until I run out of tests/doctors/ and yada, yada.

    I lost my job and a lot of my identity last year when I fell off the cliff. One thing everyone keeps telling me is that stress and depression feed fibro and CFS like gasoline does a fire. Picture yourself throwing a gallon of gas on the barbecue grill. That's pretty much what a lot of us have done to ourselves. I'm sure I'm not somatic or psychosomatic, I got sick while I still had a full deck of cards in my head. But, it sometimes seems so hard to control the worry, stress, and anxiety that I can now add chronic depression to the list. "Hey man!" "Did ya see that?" "Anyone got another can of gas?"

    Point I'm trying to make is that we may or may not figure out how to deal with the main problem, but if we try really, really hard to stay on a level field emotionally, we can keep the flames in the barbeque, so to speak.

    That being said, I'm just getting started on rebuilding that house of straw, so hope the winds don't change till the burgers get done. Meanwhile, I'll hang out with you guys and girls if ya promise to make me smile once in a while.
    Waynesrhythm likes this.