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Recovery from MS/MCS/lyme/EBV/mold/lead using Neural Retraining + Sarno

Discussion in 'Success Stories Subforum' started by lowella, Jul 15, 2019.

  1. lowella

    lowella Peer Supporter

    Following a hot water pipe burst and 10-day flood event at our historic home while we were in Florida with our family, there was a 6-month cleanup period during which I max’d out my restoration efforts and stress while minimizing sleep. I spent little time with friends and loved ones and accepted little help in the clean-up, as I felt responsible. The day after we sold the “new and improved” version of the house, I started having strange symptoms such as burning fingers/toes, then neuropathy, which quickly escalated to joint pain, random electric jabs etc. This was my body in fight/flight, sending me messages in an effort to protect me from something I couldn’t see. My unconscious brain had gone rogue, but I knew nothing about brain science at that point. All I knew is that it was extremely uncomfortable, and I would have to find a way out for the security of my family.

    During the first confusing year, I tried an extremely strict vegan diet (minus nightshades, seeds, legumes, soy, butter, oats, eggs, onions, nuts, meat, etc etc), being informed by many books and websites that was the way to reverse autoimmune disease, as well as all sorts of other techniques from Chinese medicine to $1,000 worth of supplements. I lost 50 pounds off of 170 even while trying to continue workouts. I had muscle wasting and was stuck in bed a few times with dizziness. I had persistent low level viruses such as Epstein-barr, accompanied by anxiety/depression and possibly even some mild paranoia/schizophrenia (now known to be caused by Epstein-barr). It took me a year to realize that my conscious sense of smell had been masked from living in high smells, and any chemical exposure would be detected only by my subconscious, leave me with severe joint pain for several days at a time, in addition to many other symptoms (all falling under the MS - Multiple Sclerosis, umbrella). It is estimated in scientific papers that only 5% of MS patients know that their sense of smell has been masked (note this can be triggers other than smell, like wifi or other unseen triggers when you become sensitive to sensory elements of the environment you’re in).

    The only way I figured this out was noticing that anytime I was outdoors, like at our camp for an extended period, I was in remission. This took several weeks away one summer to determine. Then, once I realized the connection to being in remission while away, I was able to think about what was different at work and home. We had moved into a new home with high chemical smells (the same paint I used to fix up the old house where I spent 6 grueling months, in addition to a lot of formaldehyde in our Amish cabinets that we never allowed to vent) but I could no longer smell anything. I had also sprayed mold regularly after the flood in the old house, which is known as a serious biotoxin… but also has a distinct smell. After linking my pain to VOC’s (volatile organic carbons – basically anything that smells, including chemicals and mold), I did mold tests at home and work and outfitted our house with a high velocity air exchanger as well as filters for the rooms, thinking that avoidance was key and we needed to pull chemicals out of the air. I was able to keep my job and get my work done because at work, we have a second building with lower VOC’s and I have a supportive boss. Along the way, I was diagnosed with gout (due to pain in toes), CIRS (mold illness) lyme, PTSD, chronic fatigue, fibromyalgia, poison ivy (due to rashes), Arsenic/lead poisoning, cyanobacteria poisoning, Sjogren’s disease, and finally, multiple sclerosis (by blood test only, as there would not have been enough evidence of brain lesions by MRI this early on).

    My symptom list just during onset included: Blurry eyesight/contrast issues, restless leg, sciatica, tinnitus, neuropathy, burning in extremities, electric shocks, soreness in joints, bruised tailbone, eyelid twitches, temperature deregulation, low sleep (many nightly wake-ups), urticaria (rashes), migraines, Raynaulds, dizziness, dry skin, cramps in hands/feet, lyme “cracks” in joints leading to excruciating pain, inflammation of one foot, and stiffness of joints. The only thing evident on blood tests until the M.S. test was an odd T3/T4 adrenal ratio and the increased viral titers of Epstein-barr. I had many negative experiences at various doctors and truly understand why now. They can’t see into your unconscious brain, where even you can’t see. There are actual biological changes that take place in the brain when this happens, in an effort to protect you – it associates the foreign chemical smells (or other trigger, conscious or unconscious) as bad, and may think there is a tiger (etc) in the room, and warn you appropriately of the danger. This doesn’t only happen with smells. It can happen with any of the senses or pseudo-senses – it has been proven that people can detect wifi waves and become just as sensitive to those as other senses. While I do have to blame some of the methods and procedures the doctors used, they are imperfect by nature - I can’t put a lot of blame on the general doctors as they just tested me and referred me out. Finally, after a few more months of investigating and reading in the evenings, I found that some people were healing their smell issues (and thus, the symptoms that go with it) through neuroplasticity – the ability of the brain to change. All chronic pain and disease begins in the brain, and all autoimmune diseases or others can be reversed in the same way. This is of course much easier said than done, but no Jedi mind tricks are involved. Just a willingness to be repetitive, accept your condition and expose yourself to the very things your brain is afraid of while visualizing the best moments you can think of. I spent the next year gradually increasing my tolerance to smells by subjecting myself to higher areas of smell than ever while visualizing (which would cause pain, but it would lessen over time, which helped me know I was improving). I also realized that due to an accident when I was 12 (falling off a ladder at roof level of a 2nd story house, breaking my femur and laying in a pool of paint for 40 minutes trying to get help) - I had "primed" (pun intended) myself for paint smell issues later in life.

    Once I worked back my MS symptoms and regained a normal olfactory sense (this took another year), I found myself with a lot of more “normal” chronic pains that roamed, such as plantar fasciitis, carpel tunnel, back pain, stiff neck, knee, hip & ankle pains, and as I healed, lesser things like a tickle in the ear, itching, sore throat etc. I continued reading and found that many people were reversing these by expressing their emotions more regularly. I knew that I was a “repressor” in an effort to keep my issues away from others, that I took on others' issues, being an empath, and that I have perfectionistic tendencies due to childhood events etc. (as well as some abuse). These traits are in our subconscious and make up our personality, which we cannot readily change. As we repress our emotions we are filling a “bucket” that may overflow when under stress and cause chronic pain at some point. This may escalate very quickly to autoimmune and be diagnosed inaccurately as “chronic lyme” or any one of the many other diseases including anxiety, depression, chronic fatigue and ALS. This was detailed by doctors beginning with John Sarno, a back pain specialist, in the 1970’s and was termed TMS (First “Tension Myositis” or a lack of oxygen to a random part of the body, and then changed to “The Mindbody Syndrome” which also fit very well with the TMS acronym).

    Throughout my experience, I didn’t feel anything was wrong other than the physical. I didn’t feel much of anything, to be honest. And that is precisely the problem. When your emotions stop, they “clog” the brain and begin to shut down system functions because the energy they create is overwhelming. They ping your pain centers over & over, saying there’s something dangerous in your environment, when there isn’t, and it is exhausting to our systems. When I talk to people now with these problems, I notice they are severely unemotive. One last thing to mention is the power of suggestion on your unconscious brain. Sarno notes that carpel tunnel was ironically not in existence back when people violently moved the typewriter carriage over & over from one side to another. Does anyone remember shin splints? Ulcers? Whiplash? These basically don’t exist today, while they were common a couple decades ago. Where was EDS even a decade ago? It sure seems popular today, with all the ads. Why did I get back pain when I read Sarno’s “healing back pain” books?

    It turns out we have a lot more control over pain and disease than we think, and certainly more than we would be led to believe by modern day sources and doctors. It takes some focused, regular work, whether it’s journaling, boxing, or whatever other way you can let your emotions out (anger, sadness, grief, guilt, etc.) and thinking about your life and your own insecurities and perfectionism, but is well worth the effort knowing that you may not need surgery or high powered biologic meds for the rest of your life. My goal is to let people know that this is in their control, and it may just help reduce their pain immensely to think psychologically about what may be bothering them and learn about those personality aspects that may be a bit extreme. We know we blush uncontrollably when embarrassed, we know we get butterflies before public speaking, and yet we won’t acknowledge that pain may be an outcome from strong emotions in the brain. This is an unfortunate disparity. Many people are even aware that pain can be worse when they are going through an emotional difficulty such as loss of a loved one. As an empath, my aim is to redirect my energy and help others as my time allows. Confidence is #1, and I’ve got mine back!
  2. Duende

    Duende Peer Supporter

    Wow, thank you!!! I love it when I find one more success story here. And yours is especially great, since you had all those things! Have you recovered from all that, seriously?
  3. lowella

    lowella Peer Supporter

    You're very welcome! Yes, I'm doing great, I have an occasional TMS "reminder" when i get overly stressed at my kids or work etc. No more symptom imperative though!!
  4. grapefruit

    grapefruit Peer Supporter

    Wow what an unbelievable story!!!!
    lowella likes this.
  5. Philippe1982

    Philippe1982 New Member

    Wow, I was just looking for this post!! Amazing! All my symptoms are exactly like yours and it made me scared because I couldn’t find any other persons with MS like symptoms etc. I had an MRI in February and turned out ok, but still I was not convinced because off all my symptoms. I learned about Sarno 3 months ago and read 2 off his books. I could reduce some off the symptoms but not all of them but I was first convinced that it took me little bit more then only the knowledge to make my symptoms go away. I did little journaling which i’m not good at because I never did it, i’m going to a psychologist but not familiar with TMS, he learns me how to deal with fear. Until now my symptoms got better but far from gone, but I was calm. Just a week ago, my brain played a dirty trick on me again and in I started to look up my symptoms again was on forums from people with heavy metal toxification from amalgame teeth fillings with the same symptoms and even people with vaccination allergic reaction. I was for 4 days in panic mode that it could be this. Reading the stories made me not sleep anymore and totally in panic mode. Until this morning, I said to myself: Phil, your brain is playing a game again, you was doing better but still a long way to go, but now your mind is playing a game again. I immediately came back for a peak on this forum, to find reassurance but I think if I hadn’t read this post that I still would be in a lot of doubt. Now, thanks to you, i’m back on track again and I will start reading again some chapters and journaling daily. If you have other suggestions what I can do more, i’m Happy to hear from them. Journaling is a real challenge for me, cause many times I just don’t know what to write. I guess my study work on the books is not finished yet, and so I must to absorb it more in my mind. Thanks so much, this post gave me back my calm, as I was really in panic mode again the last 4 days.
    Sammie and lowella like this.
  6. plum

    plum Beloved Grand Eagle

    God love you ❤️

    Thank you for such a comprehensive testimonial. I found your discussion of the olfactory sense especially fascinating because smell is so evolutionarily vital to survival that there is just one synapse between stimulus and brain. But I loved the whole story and like the way you describe your unconscious as going rogue. We can be such strangers to ourselves.

    I’m also an empath and appreciate the exquisite sensitivity of that gift. Gorgeous and very inspiring post my dear.

    Plum x
    lowella likes this.
  7. lowella

    lowella Peer Supporter

    Thank you both, I was really hoping this post would help some people at some point. Phil, yes, you're in good company. I still do nightly journaling, I still feel stuff occasionally, just gotta keep at it and try not to worry/fear as that just makes it all so much worse! Try changing your habits a bit too, as it's all connected.
  8. kkcarlton

    kkcarlton Peer Supporter

    What a great testimony. Thank you for posting. Do you still use the brain retraining program in addition to journaling?
  9. lowella

    lowella Peer Supporter

    Yes, my apologies, that should be listed, I used DNRS first for smell retraining but was left with full-on TMS and I found that DNRS encouraged only happy thoughts, it didn't say much about feeling your feelings, mindfulness, or repressing anger, guilt, etc. so while I recommend neural retraining of some type for sensitivities (of any kind including allergies), the emotional work must be done as well. I also used the free www.fastereft.com program between DNRS and TMS journaling, which gives you a little more control over which symptom you can move/push it around at will.
    westb and plum like this.
  10. Philippe1982

    Philippe1982 New Member

    Do you have suggestions what to write in the journaling? How my day was, or what frustrated me or ...? This is so hard for me, i don’t know what to write.

    I understand you so good when you write about the part where your emotions stop. The only emotion i felled for the last year was fear, Anxiety.

    I guess my work here is far from done. I Will read the books from Sarno again, try to make myself calm again and reassure myself that i’m ok and there’s nothing to worry about. I will stick to the journaling, but it would be nice if you could give me some tips what to write in them.

    Thank you so much
    Sammie likes this.
  11. lowella

    lowella Peer Supporter

    Try Nicole Sach's book "Truth" or her FB group is helpful (I have posted there a lot) "go dark", she says - things that have really made you mad, write what really frustrates you every day and try to feel it. Put in 30-60 min daily. Watch a few sad movies if you have to learn to cry, next time something in the news makes you mad, or a person, take a bat out in the backyard and hit the crap out of something inanimate. I don't have a lot of other ideas as I struggle with it myself, but putting effort into it over time truly seems to help. It seems to also help me to elevate my mood by singing or playing music I like.
    Sammie likes this.
  12. plum

    plum Beloved Grand Eagle

    I love and greatly respect that time and time again the good souls who have healed reinforce how essential the emotional work is. It cannot be emphasised enough.

    I’d not heard of DNRS but a quick search proved very interesting...and yet I defer to my comment above.

    Heartening to hear you used Faster EFT. This was my introduction to tapping and I really loved it. I stopped doing it for a long time but found myself reinvigorated by the most recent Tapping Summit at the start of this year and have been tapping every day since. These days I do the more conventional EFT but feel the differences between them are splitting hairs. It works beautifully.

    Thank you for continuing to support people here.

    Plum x
  13. lowella

    lowella Peer Supporter

    Plum, thank you for the kind words! I'd be curious if you find that tapping just moves the symptom, that is a curiosity of mine and I will try it next time I need it. I haven't tried it for about a year, but haven't really thought of it since then! It worked great to move the painful stuff to a non-painful category ;)
  14. Sammie

    Sammie Peer Supporter

    Wow lowella what a story! I have lots of those symptoms and have been diagnosed by a MBS doctor that I have MBS. The hope that you have given people is tremendous! FIGHT,FIGHT,FIGHT! This is one of the most awesome stories I have read by far!

    Thank you for sharing.
    lowella likes this.
  15. lowella

    lowella Peer Supporter

    Thanks Sammie! So glad to hear that. I hadn't heard of MBS so checked it out. They can call it what they want, but it's reversible, so don't lose heart. If I can ask a question ( you don't have to answer), did it happen when you were away from home or with different conditions/location in your home, and during the night? I'm trying to connect a trend with palsy illnesses that I've wondered about.
  16. Sammie

    Sammie Peer Supporter

    I was diagnosed with MBS by Dr Howard Schubiner an MBS|TMS doctor. They are the same thing. My MBS symptoms I believe started when I was a child. All kinds of weird stuff! As I got older they became more noticeable as an adult. I wasn’t hurt physically, I just had tons of pain,fatigue, insomnia, etc. doctor after doctor, test after test. Than I heard about TMS and it made sense too me. So I found out about Dr Schubiner by doing research. I have been in pain for a while, seems like forever! I struggle everyday with this, emotionally, physically, spiritually, etc,.

    I’m in pain all the time, it seems to never leave! I don’t hear a lot about people who are in pain all the time. Sometimes it can be a lonely existence. People seem to talk a lot about shifting pain, pain that goes away for some time and then comes back, but not a lot about continuous pain! That causes a lot of fear because I always wonder if It’s unique? Hope this answers your question? Thank you so much for responding, that means a great deal!
  17. lowella

    lowella Peer Supporter

    Sammie, I had constant pain for a loooong time. Symptom imperative. Defined by Sarno. It's not unique, I guarantee you.
    MBS does not mean what I thought it did, so ignore my other question :) No worries mate, we're all in this together. And there are more than you think who have it, they just don't know it or call it something else and get surgery all the time ;) You are privileged to know and believe!
    Sammie likes this.
  18. Sammie

    Sammie Peer Supporter

    Thank you for the kind and thoughtful message. I am trying really hard to ignore and not care about the pain. I think after you try everything you can and you don’t see improvement, then you need to relax and stop trying so hard to heal.

    Are you in New Zealand or Australia? Just wondering. Thank you again for your encouraging words. They do help!
  19. lowella

    lowella Peer Supporter

    Sorry, USA. Yes, you can't ignore forever, it's trying to send you a message to change old or bad habits, make new neurons by learning new things, and do things you will be proud of. Confidence is #1. Best wishes!!
    Sammie likes this.
  20. Indiana Girl

    Indiana Girl Newcomer

    Thank you so much for this encouraging story. I had MS symptoms, too. And much more. I was primarily bedbound a couple years. Lyme and EBV diagnosis and more. Tried so many things that didnt help or made me worse. Its been 9 years and a couple years ago through starting TMS and SE and more recently nicole's journaling, I'm starting to make great progresss.
    I can live almost normally now. However, I'm not 100% yet, often just push through feeling weird or ill and grateful i have some strength and independence back.
    Then this week was diagnosed with severely high levels of 4 kinds of toxic mold.
    Did the test hoping to rule it out. But now im fighting with fear again. Everyone saying I have to move and get rid of everything I own etc.
    What is your personal opinion on using TMS to heal while living in a moldy house? I know you left yours. But I really don't want to go back to that isolating lifestyle of fear and weird diets etc...
    Part of me is really convinced now that its largely mind over matter and I won't let fear push me around anymore. But worried I'll prolong healing by making the wrong choice. I know you cant tell me what to do. I just wondered about your opinion after going through it. Thank you!

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