losing hope

Discussion in 'Fibromyalgia Main Forum' started by babyk902, Mar 28, 2011.

  1. babyk902

    babyk902 New Member

    i'm sorry to be such a debbie downer, but i just feel the need to vent a lil, and am hoping i can get some advice as well. About a year ago I was almost 100% recovered. I felt amazing, looked amazing, had the most amazing job (or so I thought), and was almost THERE. Unfortunately, my office had some major waterleaks, and I suffered more than I could have ever imagined because of that. Ever since June of 2010 I have had this feeling of detachment, dizziness, slurring words, blurry vision, hair loss, shakiness, etc. No matter what doctor I went to no one could help me, was on a ton of anti-mold remedies (natural/holistic), have eaten absolutely no sugar, or anything that could contribute to any yeast or mold, but I still feel completely out of it all the time. I got laid off recently, and have been out of the office for about 4 months now, and I do feel a LITTLE bit better, but still have this serious feeling of detachment from reality, I just feel like I'm drunk/in a dream 24/7. It's just so scary. I have had some of the worst days and months that I could have ever imagined. My boyfriend and I broke up because it was just too much to handle. I was waking up crying every single day and just felt like I was completely losing my mind (I still do but I'm trying to be more positive). I'm just terrified to anywhere because now I'm more sensitive to ANY mold, and I just am so nervous that this feeling isn't going to go away... I've spent probably $12,000 on doctor visits, and apparently everything looks normal/fine, and have gone to neurologists, allergists, etc everything.

    what can i do? i am so devastated. I have lost my health and my happiness, and any hope that I had left. I know that all of this happened from the mold, and ever since those major water leaks these symptoms started immediately. I am just so hurt and feel like what did I do wrong to go through this and deserve this? I'm trying to practice yoga as often as possible now that I have the time off, but it's so hard to even leave the house sometimes because I get nervous driving or just even speaking/dealing with anyone because of how SPACEY i feel. I would never wish this upon anyone.. in a million years. Just hope there's some sort of light in this tunnel somewhere. :(

    Here's basically an idea as to what I've been taking also:
    Pau D'arco (anti-fungal) tea about 3x/day
    Burdock root tea (anti-fungal/detoxifier)
    Hemp Milk (omega 3's)
    Iron supplement
    Iodine supplement
    Greens supplement powder
    Hair vitamins (for hair loss)
    Coconut oil (1 tablespoon a day atleast)
    -Trying to avoid ALL sugars/wheat/alcohol, anything that will contribute to yeast or candida, etc

    **Are there any other suggestions? I feel like I've tried anything & everything, I'm not sure where else to turn, or what else to take.. would love any suggestions, and any sort of encouragement
    [This Message was Edited on 03/28/2011]
  2. karynwolfe

    karynwolfe New Member

    I don't believe we go through these troubles to be punished; I believe we are being molded into better spiritual beings. You have to admit these situations force us to take a better look at our selves and our lives. I'm so sorry you got better and then got so much worse again. I've been there and it's horrible. But I know you enjoyed what you had when you had it, and that's really important!

    I do not know what illnesses you had or have, or know much about mold. But it's okay to just take a break sometimes and give in; sometimes you have to go through a grieving process to really accept what you've lost, before you can move on and decide what to do about it. Maybe take a few days to just breathe, acknowledge that things are bad (because they are), and then maybe you can find some strength to take another step. Getting everything off of your chest is a good step. :)

    I experience derealization as well and it truly is an awful feeling; as if you are stuck between waking and reality, and can't figure out which one. I'm sorry for what you're going through, and please hang in there.

  3. mbofov

    mbofov Active Member

    I'm really sorry - that all sounds really rough. I don't think anyone deserves to have such a horrible time - I try not to think in terms of "why" certain things happen as it can very easily become judgmental. I don't have an answer for why (e.g., "why" are millions in Japan now being exposed to radiation in their food and water - we can't answer that), and just try to concentrate on getting better.

    It does sound like you are doing many good things for fungal problems.

    Your symptoms do sound like some sort of toxicity, maybe mercury or other heavy metal?

    In any event, here's my suggestion: muscle testing, done by a competent chiropractor or other practitioner. A chiropractor who does muscle testing helped me several times when the doctors couldn't do a thing and when all my blood work looked good. It's relatively cheap and they may be able to help you. Mercury issues did show up on my muscle testing, but my problem is because of CFIDS, I have a rough time detoxing, my detox pathways don't work right. Which is something I'm trying to repair with Richvank's methylation protocol.

    One way to find such a chiropractor is to go to the home page of Standard Process (which makes excellent products used by chiros and others), and their customer service will give you the names of practitioners in your area who use their products and generally do muscle testing. You can also just call chiros listed in the yellow pages.

    It's sounds like you've tried everything else so if I were you I would give this a go - good luck -

  4. kat211

    kat211 New Member

    First, please bear with me as I am loaded up on pain meds as I fell an hour or so ago and I'm having a hard time typing. #1, you have youth on your side. #2 I have been where you are, and I can tell you there is a light. I know it does not seem like it, but there is. And it gets brighter, it may dim along the way, but it is there and you will get to it.

    I remember you saying a while back that you suspected mold in your house as well. You MUST get out. you will not get better if you stay. period. you will also have to leave a great deal of your belongings behind. Yes, it sucks, but it is just stuf. Unless it can be washed in a dishwasher, on a hot cycle in the washer, or is a hard surface that can be washed with bleach, it should be left behind and discarded by a profesional. Now, this is completely my opinion based on my personal experience with mold and fibro and hearing your story.

    So, to give you hope...I am now a human again living a full human life, okay, slightly more hectic and stressful than the average human b/c of my mold house and the chaos that has come with it, but anyhow....

    Here's how I became human again. My son and I left our house. The 37th place I have lived, at least that I can remember. The place that I planned on staying until he graduated high school, he's 7, and had already begun charting my son's growth on the wall with pen (this is HUGE for me). I packed up all of our washable clothes, washed them on hot with reg detergent then allowed them into our tiny apt, actually the first apt I have ever lived in. I then spent days washing his toys with bleach and/or boiling them before they could cross the threshold into the apt. I managed to salvage a couple of lamps, an antique buffet, and a couple of other things from the garage that I cleaned and 'decontaminated' and had moved to the apt. Then I had new beds delivered and went and bought all new bedding and pillows. Funny thing is that the mold house was robbed while my ex-husband was in the process of helping move things out to decontaminate. Ok, so not really funny, but it did really help me decide what I could and could not take.

    The process I followed was what the doctors told me to. At first it was very difficult for me to get rid of so much, especially without a choice and after being robbed. Now, I look back and I shrug. It is stuff. Just stuff. Yes, it does initially sting when I look around and realize that I have lost everything that I have worked for, until I look at my son and he smiles and the color is back in his face or when he tells me he loves it that we are healthy again and I have been able to do so much for his school.

    Laid off? Have you filed for unemployment? if not why? you need to? was the lay off related to the mold? have you consulted with an atty? maybe you should. protect yourself. period. But first, if you are still in an environment contaminated with mold you must get out. you are the only one who can protect you.

  5. destinygsmom

    destinygsmom New Member

    I think it might be some type of fungus is in your house, & my house! I've found that not just me gets really tired in my house, but my caregivers who've been with me for several months start to always feel tired too; as well as does my 16 year old daughter, if it's not mold than it could possibly be that tree roots are rotting underneath your house & mine and poking holes into the water or irrigation pipes under my house causing a portion of our tiredness! Even though I already also have CFS, I'm always so tired that it is practically an impossibility to move myself to another place... I know that sooner or later I NEED to move, if it's really fungus or some type of poison streaming off of rotting roots!

    I'm new, read about me on my posts!

  6. babyk902

    babyk902 New Member

    was just curious, what kind of symptoms do you have with derealization? mine has become soo extreme, to the point where i just feel like im drunk/high and just cannot even function. it all started when i had these mold issues, and i dont know if it has gotten better at ALL in the past 6 months, and it's so so scary. i feel confused all the time, can't remember or focus on anything and just feel like everythings blurry (especially blue bright lights) and i just feel so out of it all the time, even having a conversation or walking scares me. i don't know if it's from the mold and if it will get better with time but im really hoping so.
  7. babyk902

    babyk902 New Member

    welcome to the board, and sorry to hear that you are dealing with cfs/me! it's the absolute worst :(

    you're so right that it could be the house. I have been soo incredibly lucky to have the most wonderful doctor by my side, he's a kinesiologist and deals with CFS/Lyme/Epstein-Barr etc. He can basically tell you if anything is weakening you and making you feel worse. It could definitely be mold/fungus in your house or even just anything IN the house that's making you feel worse, as crazy as that sounds. I remember one time I was back and forth between my house and my boyfriends, and EVERY time I slept at my house I felt soo horrible (my old house), and he asked what I brought into my room that could have made me feel worse. Coincidentally, I just recently put a new rug in my room, and when I removed it i felt an immediate difference. I would have never thought twice about a rug, but he's really opened my eyes and makes you realize that especially us, who are so sensitive, can be affected by almost anything.

    the funny thing that happened was i had a serious water leak in my office, and many of the girls there also got very sick but at the same time i moved into another house (my parents sold their house last May) and I think that there may be some mold issues in here as well. They're not at a point hwere they can move, and i don't have the funds to move out on my own at this point so it's such a catch22, they're going to do everything they can to clean the house and bring in air purifiers, etc, but i'm just not sure if that's enough at this point and moving just doesn't seem like an option just yet. :( I may have my doctor come and verify if it really is the house, and if the house is making such a dramatic effect on my health, or if it really isn't that much of a concern and could be something else.

    [This Message was Edited on 04/02/2011]
  8. babyk902

    babyk902 New Member

    kat, thank you I know you've been very responsive with the posts that I've made in the past few months and I know you had some issues with mold yourself as well. It's one of those things where I was almost 98% recovered, and it literally hit me with a brick wall, and I never imagined the effects that it would have on my body, because some people around me weren't even affected at all. It's just insane to me, I just don't understand it.

    I'm not with the company anymore, I was actually laid off, which happened to be the best thing because I just couldn't perform well and was too sick, and am getting unemployment thank god. I tried to consult with some attourneys but unfortuantely there's really no case worth pursuing because I couldn't afford to have the building tested, and there's not solid evidence that the building caused all of my health problems. I've been out of the office for about 4-5 months now, and honestly don't feel much better at all, so it's been the most discouraging thing ever. I'm still dealing with hair loss, feelings of detachment/reality, confusion/disorientation, etc. I'm hoping that we can determine if the house that I'm in now is part of the reason, but everyone else in my family seems to be fine and they just don't get how it could be affecting me so bad if it's not affecting them. I'm at a point where I honestly may even consider moving to California for a couple weeks/months and seeing if I feel better.

    How did you know your house had mold? Did you see it or smell it, have someone come in and confirm it?? I don't know how severe the mold is here if there is anything but i also know that my parents and myself cannot spend a fortune to have it checked out either. so just taking it day by day i guess. i just hope things get better at some point.
  9. Scapper

    Scapper New Member

    I notice you live on LI.....so do I, as does my practitioner.

    He does NAET to clear allergies......very effective w/ mold, or any allergic reaction you're having.....trust me, he can find it. He works w/ the "Vega" system (energy work).

    Dr. Robert Capuano, Hauppauge (631) 979-2977

    He's holistic, so it's all out of pocket. I personally think he is worth it. I'm not sure a mainstream M.D. would be able to help w/ the symptoms you're describing.

    Call him! Let me know if you go and what you think. If you have any questions for me, I'll be happy to answer.

  10. babyk902

    babyk902 New Member

    i'll take the help from a fellow long islander any day, thanks so much! never heard of him. i actually was going to someone in smithtown (ken moss) not sure if you're familiar with him, he does NAET also, and helped my sister a tremendous amount with her allergies, but not sure if he really helped me out, i'd love to give this other guy a shot though. will let you know how it goes!
  11. Mikie

    Mikie Moderator

    It's really tough to experience some healing only to crash from something in our lives or environment. Tis the nature of our illnesses that we can heal but we are vulnerable. Please don't give up hope. I know it feels like being knocked down, getting back up and being knocked down again. Do your best and believe that if you can heal once, you can heal again.

    Love, Mikie
  12. Scapper

    Scapper New Member

    Yes! I'm familiar w/ Ken Moss. I used to see him for acupuncture and then we began NAET work back in early 2000's......saw him for quite a while, but I definitely needed more (CFIDS).

    Ken used to work in Dr. Capuano's office.....not sure where you saw him? Capuano is on Town Line Road in Hauppauge.

    Dr. Capuano's work is sooooo much more "involved" than Ken's.

    I know I can't make promises here, but I really think Dr. C could help you w/ what is happening.

    BTW, what is the name of your holistic practitioner?????

    The thing w/ Dr. C is that he can (a) clear the mold (IF that is what's happening); and (b) give you products to chelate.......sometimes w/ something that is "stuck" you need the clearing in conjunction w/ products. [of course this is all speculation, since you don't really know what is happening YET!]

    Well, definitely let me know if you decide to go to him. FYI -- takes awhile to get a first appt......he runs a rrrrreally busy office.

  13. babyk902

    babyk902 New Member

    that's too funny, what a small world! Ken's been great, I just don't think he's been able to help me for some reason, but I know he's phenomenal with just about everyone else.

    The holistic doctor I go to is Dr. Steven Silverman, who is also in Hauppauge (and Roslyn as well). He is the most amazing person ever, and is the only reason that I basically got my life back. He's a kinesiologist/chiropractor and does a lot of muscle testing, I would recommend him to anyone and everyone.

    Ken is actually right off of Smithtown Blvd (right inbetween that and Terry Road if you know the area). I would absolutely love to give Dr. Capuano a try so I may contact him this week.

    Thanks so much for your help! You have to let me know if you try Dr. Silverman at all. I highly recommend him. He got me functioning about 90-95% until I had these issues with the mold. He's a great guy.
  14. Scapper

    Scapper New Member

    Yeah, I agree -- Ken's great -- but these issues are just too big for his type work.

    I'm surprised Dr. Silverman can't help you w/ this mold? Does he say it's DEFINITELY mold?

    Does Dr. Silverman muscle test BEFORE he adjusts (if you've seen him for chiro)?

    I've actually been looking for a chiro closer than Hauppauge (Dr. C is also a chiro) but haven't been able to find one that uses kinesiology before adjusting and Hauppuage is just waaaay too far for me to drive for an adjustment only (Roslyn's a bit closer).

    Wait till you see Dr. Capuano's set-up -- I'm "thinking" you're going to be happy you went!

    Before you go, lF you go, let me know, so I can give you a bit of a run-down of what would help on your first visit.

  15. Scapper

    Scapper New Member

    Just looked him up.......sounds impressive.

    I'm going to call his office to find out what his adjustment fees are.

    Sounds like he does "similar" work (in theory) as Dr. Capuano, except Dr. C uses the Vega System to pick up energy blocks......therefore he can scan through A LOT with this machine, rather than arm testing single energy vials.....he then does clearings, which I think would be beneficial IF it's mold.

    I once had mold in my lungs. I had shortness of breath (which felt awful!!!) and a chronic cough.....it was mold! He cleared it and I LITERALLY felt better within a day. Now, my experience w/ other issues regarding CFS haven't been as miraculous, but that one was.

    I'll keep you posted on Dr. Silverman.....my energy is REAL low, so it may take me awhile to get up the umph to even call! But, I'll let you know.

  16. babyk902

    babyk902 New Member

    i guess we'll be switching, you can try dr. silverman and i'll try dr. capuano! haha all i can tell you was prior to this he literally saved my life.. it became very costly (about $150) every 3 weeks but it basically got me through the day... he can test every single thing that you're putting in your body and determine if it makes you weaker/stronger and it's taken me a long time to make certain adjustments but eventually you learn to listen to your body, or you just focus on the things that are good for you.. it's learning a whole different side of nutrition, and how the body is affected by everything around you and anything you ingest, so amazing! i know everyones different and i don't want to get your hopes up either, but i had a great experience with him and i am so thankful for how he's helped me. I couldn't find any info on Dr. C, is it all out of pocket also?
    Best wishes,
  17. kch64

    kch64 New Member

    You know you might be having migraine with dizziness. I felt the same way and my doctor started me on propanolol. It helped. Not a cure, but feel much more normal. I was feeling detached and spacey. Anxiety can also cause it along with the illness. You will get better again.

    Currently, I'm in an episode of insomnia. Can't shake it to save my neck. I've missed 7 days of work because of pain and sleep issues. I hate this. Hang in there baby. Hugs to you
  18. Scapper

    Scapper New Member

    Hi Karen: Yes, Dr. Capuano is all out of pocket, unfortunately.

    Sounds like Dr. Silverman does the same work as Dr. C and "yes" it is an amazing process.

    But, as I said, IF mold is your issue, Dr. C can clear it, or hopefully find what it is that all of a sudden knocked you down.

    If I go to Dr. Silverman, it would be only for adjustments, since Dr. Capuano does the same work (and uses Vega). I would go to Dr. C for back adjustments, but he's just so far from me to go regularly.

    Good luck!!!!

  19. destinygsmom

    destinygsmom New Member

    I understand how difficult it can be when whatever is there in your house/rental that's affecting your health condition! I too have felt that I need to move forever it seems because of myself & my daughter's feeling always sleepy! Well seems like I'm going to have to find the help that I need to get myself moved to a new place before October, because I'm on section 8 housing assistance; & they have some new rules going into effect here that if you are a mom with a child of the same sex (even if a teenager), you only qualify for a 1-bedroom place! I'm in a 3-bedroom now because I qualify for reasonable accommodations because of my medical conditions; but with this new rule, it'll only allow me to qualify for a 2-bedroom place whether or not my daughter is living with me! So I wouldn't have to feel that I'd end up having to move again, if or whenever she decided to move out on her own! I really don't have the money for a down or damage deposit on a new place yet, or any energy available for packing up everything let alone the move; so somehow I'll have to find people, willing to help!

    I hope you're able to find those who'll help you to do whatever you need done, too! Hope that your day is going alright, mine is spent lying upon my bed all day long for the most part; because my body can't make enough Adenosine Triphosphate (ATP) energy, for doing much at all! Yet I do feel so much better & with less pain than I had before taking the regime of vitamins, minerals, & d-Ribose powder to make myself new ATP! Many don't believe, unless they happen to be one of the individuals who have had the test done, take the regime, & felt the changes taking it has produced in their health & energy levels {all of these things are the proof that the condition is a real condition because nothing else ever worked while it does}! God be with you, have a good day!
  20. MsE

    MsE New Member

    I particularly agree with your first line: "I don't believe we go through these troubles to be punished; I believe we are being molded into better spiritual beings." Right on, Karyn. It's the only thing that makes sense to me.