How I've been treating my body

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by lostleaf, Apr 11, 2013.

  1. lostleaf

    lostleaf Member

    I had a remarkable realization last night I'd like to share.

    I was diagnosed with CIRS just two weeks ago. It changed my world.

    I realized I been treating my body the way i'm afraid people will treat me - seeing it as weak and whiny; ignoring its complaints; doubting, minimizing, and dismissing what it tells me.

    That is no way toward wellness.
  2. ameilie73

    ameilie73 Member

    I do apologise in advance, but i am a little confused, which im sure isnt a new thing to the members on these boards. I didnt know what CIRS is so i googled it and its thrown up Tissue Stimulation and Phantom Technology, Chemical Inspection and Regulstion Service, Centre for Innovation and Regulatory, A retirement plan and a school in India etc etc.

    Then it occurred to me, is it SIRS? And maybe we spell it differently because i live in england. Or maybe its something totally different. English versus American words have sometimes been known to cause a little confusion on these boards. So I dont know...

    I would like to know more about you and what you are posting about, but not for the first time in my life im not sure what im talking about.


    Thank you


    Ameile
  3. LadyCarol

    LadyCarol Member

    CIRS is Chronic Inflammatory Response Syndrome.

    Would you confirm that is what you have been diagnosed with please ?

    Would you tell us more about what you have been going through and how you are suffering at the moment please ?

    What support & help are you receiving ?

    Thank you.
  4. ameilie73

    ameilie73 Member

    So it is the same as SIRS then? System Inflammatory Response from the immune system in response to infection often related to sepsis. Or was i completely off the mark?

    Thank you for your response Lady Carol


    Ameile[This Message was Edited on 04/11/2013]
  5. LadyCarol

    LadyCarol Member

    Ameile, see the link below for more info about CIRS.

    http://www.survivingmold.com/about/ritchie-shoemaker-m-d
  6. ameilie73

    ameilie73 Member

    I never knew mold could cause such illness, i know the spores are not good to inhale but i never knew about this. Lots of families are living in mould infested properties in the uk because they cannot find anywhere affordable to live, and there are some ruthless landlords about.

    I remember when i was young we had an indoor swimming pool. It got knocked down when all the asbestos scares came out. I know a few people that have passed away from asbestos poisoning.

    Yes, id like to know more about CIRS Lostleaf and your experiences


    Ameile
  7. lostleaf

    lostleaf Member

    Hi Everyone...

    Apparently I haven't turned on email notifications - I didn't know anyone had responded!

    Yes, CIRS is chronic inflammatory response syndrome. I'm not sure how it relates to SIRS, though.

    My symptoms have been fatigue, insomnia, cognitive impairment, bruxism, hypersensitivity and overwhelm, intense allergies, depression, vision problems, panic/anxiety attacks, and insane, suicidal pms.

    In case this is helpful to anyone else... before I was diagnosed, i started taking a magnesium supplement, and it worked wonders for the pms. amazing. if you have bad pms, you really should try it. i noticed huge difference the very first month. If youlive near a Trader Joe's they have a relatively inexpensive supplement.

    as far as support... like a lot of folks with this cluster of autoimmune diseases, I don't really have many people in my life anymore. I just haven't had energy for friendship. My mom lives in my city for the winter, so she has helped some. I'm very grateful, but it's really complicated. My ex-its-complicated has been great andis really there for me.

    I know I'm lucky to have a doc that believes me and knows how to treat this. But she's really inaccessible. I would be grateful for more medical support, but it seems having any is more than most people have.

    Right now I just have a zillion questions. I need to move and get rid if all my possesions - I'm not sure how this is financially viable for anyone except the most well-off. Certainly not someone who has been sick for years nd years and years. snd i don't know how i am supposed to make all this happen when i m so tired all the time.

    i know things will get easier, but right now i feel like a bomb was set off in my life. i wish there was somewhere safe i could go for a month and just rest, grieve, and find my center again.

    i'm also struggling to keep on top of my business. i love my work. i build websites and i work for myself, from home. that is such a gift, i don't want to lose it. but programming is getting harder as my cognitive functions decline, and dealing withthe diagnosis is sucking up all my short supplies of energy and fortitude.

    i am just really tired, really confused, and sometimes i am scared.

    that is a whole lot more telling of my problems than i usually do, but at least the people here get it.

    the silver lining of all this is that, so far as i can tell, my eventual goals needs to be living in a safe home out of the city, growing my own food and trying to live as chemical-free as possible. that's pretty much exactly what i wanted out of life anyway. i just have to hang on to my brain power long enough to make it happen.

    i really want to get well.
  8. lesliesue

    lesliesue New Member

    Your story has really touched me. I have CIRS, among other things and a lot of the same symptoms as you do.

    Last year my husband and I were both diagnosed by Dr. Shoemaker. We cleaned our house, which unfortunately is really expensive. Most of the stuff from the basement is still out in a pod. And we have more to go, but it is better.

    It is so hard when you are sick and exhausted

    Do you have an air purifier? I think that is what they are called. We have a couple and they are helping enormously. Can you move soon? The sooner you are out of a moldy place the better. Mold is so ubiquitous, unfortunately.....so it makes it difficult to know if you are in a safe place or not (building, motels, etc.). Although my nose has learned to recognize it immediately.

    The cognitive stuff is so difficult. My husband is a programmer. He somehow keeps doing it...so hang in there! Whatever questions you have, fire away. I spent all of last year steeped in this stuff and I know a lot of people up here are really knowledgable.

    By the way, can you turn on email notifications up here?

    Hugs,
    Sue


    [This Message was Edited on 04/13/2013]
  9. lostleaf

    lostleaf Member

    Hi Sue-

    Thank you for your thoughtful reply. I am flabbergasted by the number of stories I have heard in the last couple weeks of the things people have had to go through because of these diseases. And then now I remember that now it is my story too...

    Everyone is reccomending air purifies and it sounds great, but I m reluctant to buy one and bring it into my current home. I can't afford to buy another when I move, you know?

    I am so sorry you had to remediate your house. It's so crazy expensive. I want to move soon, but it so overwhelming. Like you said - mold is ubiquitous, and there is just no way to know if a place is contaminated or not, without expensive testing. I' m trying to get a manufactured home and some land, but it so complicated. My mother wants to help me, but she has an agenda of her own and I don't have the strength to advocate for myself. I feel like I am losing evetything, and if I let her push through the reult she wants, I will be losing my future too. But who has the money to manifest a new home and possessions all by themselves?

    Did you replace your computers? Or did you learn any way to clean them? My work computer is expensive and I really need a backup computer too. (I once lost my computer to repairs for six weeks, ugh.)

    Did you replace or clean your car?

    Anyone who knows anything about what possessions can be cleaned and kept, and how to clean them, please enlighten me.

    I would really value any tips your husband may have to share about keeping up with work. i love my job. i worked so hard to be able to work for myself, from home. I think lmy business might be the hardest thing to lose. I am still doing okayish, but I have no idea what my future holds.

    Thank you for responding and listening. It feels good to get it out. People who haven't been there just don't really understand.

    Are you feeling better now, after all your hard work?

    Kim

    ps - i can't find email notifications, boo
  10. lesliesue

    lesliesue New Member

    Hi Kim,

    My heart is sad that you have to go through this without a good support system. It is hard enough as it is. But the good news is you can keep many things.

    I am going to list everything I can remember that Shoemaker said to do.....I have it written down somewhere....so I'll look for that later and add stuff I have forgotten.

    Computers....Keep! Yay! Shoemakers said vacuum them, the air grates, etc. and wipe them down with mold killer.

    Anything you can wash you keep. So all your clothes can go in the washer, or you can have things dry cleaned. If you have a couch with slip covers you can keep it, as long as you can wash/dry clean the slip covers.

    All non-porous things can be washed and kept. Items, furniture, etc. Wood you keep. It is a long tiring process but wonderful not to have to get rid of everything.

    Books, if they have been closed, Shoemakers said vacuum the outsides and keep them. Open books are trash. : ( This one is tricky. We threw out anything suspect, but kept most of our books.

    The car. That is a judgement call. We kept ours and rug doctored it. It seems fine. If you know your car is moldy, you should probably get a new one. Pay attention to your symptoms...if they get worse in your car - not good.

    Stuff you need to get rid of:

    Paper, cardboard, anything like this that has been out in the open. It you have something you can't bear to part with, put it in a plastic bag.

    Rugs. If the rug is washable keep it....if it is thick and you can't wash the front and back you probably have to throw it out.

    We had to get rid of a lot of rugs and an old couch. But we rented a rug doctor and cleaned a couple things really well and kept them. So we kept a chair and a newer couch.....these weren't slip covered items. They are iffy, but we couldn't afford to get rid of and replace everything.

    Do you have mold growing in your house now? We had stopped all the active growth, but had to clean toxins off everything. Walls, ceilings, etc.

    Can you rent a room in a house, temporarily and put the stuff you keep in storage? A room in a clean house might be cheaper. Have you started on cholestyramine (CSM)? Do you have any other health issues? How are you feeling? Can you think straight, for the most part?

    My husband brings his laptop and/or computer with him and works all the time where ever we go, if there is Wi-fi. Can you bring your business with you? I can understand why this is so important to you! In my opinion, do anything you can to hold onto your business. Hang in there.

    I have a lot of health problems, so I did feel better but had a set back. I had to use Welchol because I had a horrible reaction to CSM. I have either Lyme or post Lyme and viruses or post virus problems.

    My husband definitely feels better on cholestyramine and tends to feels worse when he goes off.

    This is so long! So I'll finish up, but if I have forgotten anything please remind me and any other questions just ask. If I can help someone else get through this awful process, I really want to do everything I can.

    Love and hugs,
    Sue
  11. Richie Shoemaker, M.D., Reprimanded (Oct 17th 2013)

    In March 2013, the Maryland State Board of Physicians reprimanded Ritchie Shoemaker, M.D. Shoemaker's Web site states that he retired from clinical practice on January 31, 2013. The consent order (shown below) states:

    • Shoemaker was doing business as the Chronic Fatigue Center, in Pocomoke City, Maryland.
    • In 2006, in response to a patient complaint, the Maryland Board cautioned him about maintaining proper alternative medicine protocols.
    • In 2009, the board repeated its warning in response to an anonymous complaint about his "treating and prescribing for Lyme disease over the Internet."
    • In 2010, a complainant reported that Shoemaker was soliciting patients through a Web site that offered an online test. in response to this complaint, the board reviewed the case, supoenaed other patient records, and concluded that Shoemaker (a) used documentation was not consistently legible, (b) attempted to justify the ordering of tests by using diagnostic codes for conditions not documented in the patient records, (c) failed to document his rationale for treatment decisions, (d) and prescribed the drug Procrit in a potentially dangerous manner.
    • If Shoemaker resumes practice he must serve two years' probation with at least one year in which his practice is monitored by another physician. He must also refrain from requiring or asking patients to donate to his research organization.
    http://www.casewatch.org/board/med/shoemaker/consent.shtml