1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
9th Invest in ME International ME Conference, 2014 - Part 1: Autoimmunity and ME
Mark Berry begins a series of articles on the 9th Invest in ME International ME Conference in London, with a look at three presentations on autoimmunity
Discuss the article on the Forums.

18 years old, NYC, CFS all life, in need of suggestions

Discussion in 'Lifestyle Management' started by Dmitri, Oct 13, 2012.

  1. Dmitri

    Dmitri

    Messages:
    66
    Likes:
    27
    NYC
    Dainty: Thank you for sharing your story. I explored the link. This is a whole new realm of practice that I wasn't aware of! Only problem is that it's expensive, but the chance is really worth it.

    xks201: Hormones are something that I would like to test, but I think it's more likely that any hormone problems present would be a symptom and not a cause. I don't know if this is related, but my nose radically changed shape in a short period of time. It was originally smaller with a more concave shape, now it's getting more and more massive while bending downwards. I feel strong pressure and pulsation on it.

    Wayne: Thank you :)

    Koivy: I will sign up. The internet is the only outlet for social interaction I hold and this site will be valuable.

    @nanogug: Excellent, I subscribe and provide a condensed version of my first post. There seems to be a huge grey area between CFS, POTS, mastocytosis, fibromyalgia, etc. Watching the videos, I was able to relate to many of the described symptoms. (pain, itch, fatigue, IBS). From what I know, fibromyalgia usually refers to symptoms with touch sensitivity on skin. I don't have that hypersensitivity to touch, but my stomach is very sensitive to acid, food, textures. A lot like fibromyalgia in the stomach.

    Drugs are something I'm restricted from because of my hypersensitivity. Thankfully Dr. Levine specified that, or else they would be forced on me if I end up in a hospital. I did have to be taken away by an ambulance at one point. I am willing to try alternate methods like herbs, does anyone have ideas on any that can replace the drugs like Allegra?

    In June 2010, my intestines had a different problem (the chronic IBS-D started in April 2011). I couldn't consume rice that was cooked with the "cook until all water is evaporated" method. When I tried it, my body began to violently eject it 30 minutes later (right after the NEXT meal, as my IBS commonly responds to offending foods). The pain in my intestines was so strong that I fell down. I was rushed to a hospital where it was over after the diarrhea finished.

    I should mention that I tried various protocols and alternate treatments in the past. I was on a gluten free diet for over a year but it did not work, and the lack of wheat bread's physical properties was detrimental. Cutting out dairy didn't help either, cheese is one of the least offensive foods for me.

    I also went to a few renown "mystic healers" which I'm sure many of us here also tried ;)
  2. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    384
    Virginia, USA
    If you'd like, take this to your doctor next time you see her: MCAS Primer for Physicians. Good luck!
    Dmitri likes this.
  3. vli

    vli

    Messages:
    1,735
    Likes:
    1,793
    CA
    I just wanted to say I can really relate to this Dmitri... altho I never went to any such healers I had a hard enough time with people in church because it actually distracts and takes your attention away from attacking your illness from a physiological standpoint.
    Dmitri likes this.
  4. Dainty

    Dainty Senior Member

    Messages:
    1,353
    Likes:
    519
    Washington State
    The expense varies widely from one osteopathic doctor to another. My own charges only $60 for subsequent visits, and $120 for the first visit. Thus, the ongoing cost of my treatment is about the price of a cheap massage! He's highly respected in his field andcould easily charge three times that much, but keeps his prices low to make it affordable for people to see him.

    I've heard of another that charges $70 for subsequent visits, so I know mine is not the only one. A third I know of, in Oregon, treats any children for free.

    Not your average doctor. ;)
    Dmitri likes this.
  5. john66

    john66 Senior Member

    Messages:
    118
    Likes:
    72
    Dmitri, you may consider trying quercetin to replace Allegra. Dr. Richard Ash, who is my PCP, is a very big proponent of it. He is on the radio on sundays from 5-7, on WOR
    Dmitri likes this.
  6. Dmitri

    Dmitri

    Messages:
    66
    Likes:
    27
    NYC
    For more on drug replacements, I am thinking about how to deal with my rotting wisdom tooth. Untreated, its spread will be disastrous. Anesthesia is off limits for me and would probably kill me. As hard as such things would be to arrange, I've been contemplating about alternatives like hypnosis.

    The IBS-D still persists and drains the life out of me. I will only make progress when I get something technical like gut flora tested. My body is still developing and this is a bad time to be malnourished.

    Chicken of any sort triggers IBS for me, and I always try to eat organic. Turkey is still edible, though. For potatoes, it could very possibly be the nightshade toxins effecting my sensitive gut. I have yet to try other non-nightshade tubers to confirm this. I'm thinking it could also be the starch structure?
  7. Wayne

    Wayne Senior Member

    Messages:
    2,191
    Likes:
    1,265
    Ashland, Oregon
    Hi Dimitri,

    You seem willing to consider various alternative therapies, so thought I would mention that I've heard of Rife machines having frequencies that have been able to affect oral infections. The challenge would be to find somebody you might be able to borrow one from.

    Wayne
    Dmitri likes this.
  8. Dmitri

    Dmitri

    Messages:
    66
    Likes:
    27
    NYC
    I googled it and have to say I'm surprised that I never heard of this before.

    Searching led me to a thread on a different forum from years ago. The poster says his CFS was caused by recreational drugs. Like me, he is intolerant to any further forms of drugs. taniaaust1 posted there too

    http://forums.bettermedicine.com/sh...g-amp-neurological-damage-after-drug-overdose

    http://forums.bettermedicine.com/sh...t-me-disabled-10-years-with-very-odd-symptoms
    I suspect that when I was around age 1, the unfortunate combination of antibiotic and diuretic forced by doctors destroyed my nervous system. If it was the antibiotic alone without taking diuretics straight after, I might have recovered. Similarly, if the antibiotic didn't scorch my body beforehand, the diuretic would not have been so severe in its effects. Interesting how part of dysautonomia is water loss, and a dehydrating drug is a culprit.
  9. Wayne

    Wayne Senior Member

    Messages:
    2,191
    Likes:
    1,265
    Ashland, Oregon
    Hi Dmitri,

    I read the story from your above link which I found quite interesting. It reminded me of a man I once met who said he was totally healthy until he did some cocaine (for the first time). It literally destroyed his health, and has never been able to recover. Makes me wonder if he sustained the same kind of "overheating" you're referring to. The story also fits in with the numerous reports of pwME/CFS developing ME/CFS after sustaining various "shocks", mostly physical, but occasionally emotional.

    I myself sustained a major "chemical injury" about 30 years ago, with accompanying fevers and feelings of excessive heat in my body. There's most likely more factors I'm dealing with, but it feels like this episode also majorly disrupted my neurological system. From a somewhat broader perspective, I feel it disrupted my entire "electrical" system, which to me includes energy flow through the meridians, chakra energy flow disruption, electrical connections with my emotional body, etc.

    To address some of this disruption, I've learned a number of "energy balancing" techniques which I do on a daily basis. This includes various forms of "polarity therapy", balancing of the cortices (brain), various tapping exercises, such as EFT, etc. (Biocircuits have also been helpful in this regard). I even do these techniques at night when I awaken if it feels like I won't be able to get back to sleep. Doing these regularly help me keep an even keel when my whole neurological/electrical system seems to be so adversely affected by normal stimulation (or even no stimulation at all).

    Best, Wayne
    Dmitri likes this.
  10. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Messages:
    1,767
    Likes:
    328
    Southern USA
    I take Quercitin and Nettles, combination by Designs for Health when I have allergies or my ears are full. Love that supplement.
    Dmitri likes this.
  11. Dmitri

    Dmitri

    Messages:
    66
    Likes:
    27
    NYC
    Wayne: The prescription drugs usually affected me instantly.There was also a steroid-type drug prescribed by one doctor that energized me with the first dosage but the second one harmed me very badly.

    Are you also able to meditate? That activity is impossible for me due to the overwhelming pain and brain symptoms. The OCD makes it even harder, I feel strong painful pulsing especially around the sides of my head (I think it's vagus nerve) , and each pulse also brings an intrusive thought or word that starts a compulsory ritual. The strength of the OCD is correlated with my general condition (e.g. having the flu makes it much worse) Strong anxiety is also felt in my gut of course.
  12. Wayne

    Wayne Senior Member

    Messages:
    2,191
    Likes:
    1,265
    Ashland, Oregon
    Hi Dmitri,

    Regarding your reference to the possibility of vagus nerve involvement: I had a structural procedure done in 2007 called Atlas Profilax. It "repositions" the atlas (uppermost cervical vertebra), and in my case, I believe released a lot of pressure on my cranial nerves, including the vagus nerve. Since having that done, I've noticed many improvements and have come to believe AP should be seriously considered by anyone with ME/CFS. It's a one-time procedure that generally costs around $250.

    Am I able to meditate? As with all things associated with ME/CFS, this is not an easy question to answer. I first tried meditation when I was in my 20's, and discovered it didn't suit my temperament all that well. In short, I fairly quickly realized it tended to make me lethargic, so I discontinued it. By my late 20's, I discovered something that did work for me, a "spiritual exercise" called "Singing HU" (click on the link in my signature for a description). I found this to be much better suited for me than meditation.

    My ME/CFS became much worse around age 40, and of course disrupted my life in major ways, which included my daily spiritual exercise. For the most part however, I've been able to work around most of my ME/CFS limitations, and find creative ways to continue with this practice. I've been very grateful for this, as I find it almost indispensable in helping me keep my own spiritual equilbrium.

    Regarding how this might pertain to your own difficult attempts at meditation: I think it's possible some of your problems with meditation may result from some of the "mental effort" involved (of course, I could very well be wrong). My own understanding of mediation is that it involves our thoughts (or perhaps more accurately, the evasion of them), which can be somewhat stressful for some people.

    On the other hand, Singing HU, in conjunction with creative spiritual focus, can lift a person above the mental realm. This can then lead to various experiences with the Light and Sound. This has been (mostly tangentially) referred to in various religious texts (such as Jesus's disciples' experience at Pentecost). Many other names have been given to this Light and Sound by various religions and spiritual paths (such as Holy Spirit, or Holy Ghost, Divine Love, etc.)

    I guess the main point I would make about this practice is that it's intended to help a person recognize and experience the ever present spiritual guidance and love that is in our lives every moment of every day. In this regard, it seems to be much less involved with thought processes than meditation. My experience has been that it helps me keep an even keel, and be more patient with the profound impacts ME/CFS has had on my life.

    I could add more (and would be happy to if you had any questions), but would just say I believe it would be good for most everybody with ME/CFS to find a spiritual practice that works well for them, whether mediation, prayer, forays into nature, etc. Whatever helps us keep our hearts open in spite of our difficulties can make a huge difference in our lives.

    Best Regards, Wayne
    merylg and Dmitri like this.
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,616
    Likes:
    5,438
    Albuquerque
    The vagus nerve does seem to be involved with many of us. Some have even had vagus nerve stimulators implanted, though that is a very risky procedure and I wouldn't recommend it. I have had good treatment of the vagus nerve with a visceral therapist. There is a very, very good one in NYC who might help you with many issues. He helped me a lot.

    This is similar to the therapy that Dainty has described. Contact me on chat if you want to know about the person in NYC.

    Best wishes,
    Sushi
    merylg, Dmitri and Dainty like this.
  14. Dmitri

    Dmitri

    Messages:
    66
    Likes:
    27
    NYC
    Through symmetrical pain on both sides, I can feel it in my head and trace it down my neck and back. Atleast I think it's the vagus nerve. Standing up increases pressure, so does moving neck. My sleeping position is also related. Being in the wrong position will mean the day after waking up will be hell with even stronger pain in those regions. Sometimes, sudden moves of my neck cause a rush of heat and pain from neck into head.

    This disease keeps every part of me in a cage of pain and fog. Any sense is obstructed, including spiritual. My mind carries pleasantly enigmatic visions that I cannot describe, and my brain is too sick to comprehend them. I would say it's like putting undecipherable software on a incompatible computer, it's there and you have a slight idea of how it might feel, but it can't be read. Maybe it's something preserved from my early childhood. I was always fond of starry views.

    Thank you for describing these practices so clearly, I want to try this sometime. It gives a lot to think about.
    vli likes this.
  15. LilacGardenia

    LilacGardenia

    Messages:
    71
    Likes:
    38
    You could probably get your wisdom tooth out without anesthesia, like just have them numb your mouth if possible. I've heard great things about hypnosis -- it doesn't work for everyone, but I've heard of women that have given birth using it and experienced absolutely no pain. I've also heard of people undergoing surgeries with it.

    I had all my wisdom teeth out when I was like 15 and it wasn't bad at all. I had it done on a Friday and was back to school on Monday. Good luck! :)
    Dmitri likes this.
  16. Dmitri

    Dmitri

    Messages:
    66
    Likes:
    27
    NYC
    LilacGardenia: Thank you :)

    Half of this tooth is already missing and it's like a time bomb. There will be consequences if the decay reaches a nerve etc. Continuing the topic of teeth, I find grey bread so much better for my teeth. White bread hurts them because it acidifies so fast in the mouth.
  17. caledonia

    caledonia

    Messages:
    2,805
    Likes:
    1,389
    Cincinnati, OH, USA
    Like LilacGardena said, at 18, getting wisdom teeth out shouldn't be too bad. What happens is, as you get older, the roots grow longer and longer and even get curly. This makes it difficult to get them out. So it's much better to get them out when you're young.

    I had mine out in my early 30's. I had general anesthesia. I was off work for 10 days and even then didn't feel well enough to return to work, but I forced myself to. I remember sitting at my desk wondering how I was going to walk the 100 feet across the atrium to the bathroom. Looking back, I believe this was my first bout of ME/CFS, which I recovered from after about a month. My health gradually went downhill after this surgery though and I become disabled about 5 years later.

    That being said, if you have to do general anesthesia, there are better ones for those with ME/CFS which don't go through the liver (non hepatic).

    When I do local anesthetic, I get the 3% carbocaine (the one without the epinephrine). It doesn't last as long, but it will keep you from jumping out of the chair with anxiety.
    Dmitri likes this.
  18. Dmitri

    Dmitri

    Messages:
    66
    Likes:
    27
    NYC
    I am sorry to hear that. Can you conclude that the anesthesia caused your CFS? So far, I can say any anesthetic will be deadly for me...
  19. merylg

    merylg Senior Member

    Messages:
    764
    Likes:
    492
    Sydney, NSW, Australia
    Hi Dmitri,
    Early onset periodontitis can be a manifestation of systemic disease. Consider an underlying inherited genetic disorder eg Ehler's Danlos Syndrome, Marfan's Syndrome, Loey-Dietz Syndrome, Glycogen storage disease. Consider other causes listed here too:

    http://en.wikipedia.org/wiki/Periodontitis_as_a_manifestation_of_systemic_disease
    http://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome
    http://www.loeysdietz.org/images/LDS-MFS.pdf
    http://en.wikipedia.org/wiki/Periodontitis

    People with underlying connective tissue disorders are at risk from dental procedures, as can get infection of heart valves. Often need antibiotics before any procedures.
    nanonug and Dmitri like this.
  20. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,868
    Likes:
    4,792
    Sth Australia
    There are "holistic dentists" in some places who do use hypnosis for pain relief in their patients. I suggest to do a holistic dentist search if you dont know of one.

    As caledonia spoke about in her post.. take extreme care if you do end up having no choice but to have an anesthesic, make sure you have one of the sort more suitable for ME people.

    An ambulance nearly needed to be rung after I went to dentist one time as they had used an local anesthestic which had epinephrine in it to numb my teeth.. it sent me into severe neurological symptoms almost full seizures and left me unable to walk (anesthestics with that in it ME patients should avoid). That wasnt the worst of it.. the injection with the epinephrine.. where it had been injected into the top of my mouth.. hurt FAR FAR worst then the big gaping holes in my mouth where my wisdom teeth were removed..they were nothing compared to the pain from the actual injection place and the injection site was still bad the next day too (while wisdom teeth places were fine).

    The local injection the dentist had used which had the epinephrine was lidocaine... Next time I went to the dentist I had lidocaine too but that second time I had it without the epinephrine in it and was fine. (so that tallys with what Ive since read that those with ME should avoid epinephrine/adrenaline).
    Dmitri and Wayne like this.

See more popular forum discussions.

Share This Page