dsdmom

We have stuff growing on the ceiling above our shower. It's mildew/mold. And it grosses me out. Honestly I cant imagine undertaking what thankful is rightn ow as far as remediation. we don't have the $ right now...

thankful, my heart sinks for you when I think about how much this must be costing! I mean of course it's for the right reasons but still it must be so expensive! OK I am going to ask what may be a very silly question. What is the deal with mildew? Is that considered mold? Is it dangerous?

This really makes me wonder...as I said earlier in this thread my new doc says for some people there is a strong environmental link. I wonder because we had just moved into our new (very old) house when I got sick. That being said, I believe the reason I got sick is that I had some awful life-threatening complications and several surgeries and months in the hospital when I gave birth. Then I was sick. However, our cat right around the same time developed some sort of allergy. We don't know what it is - but it has to be to something in this house - she didn' thave it before and now she licks all of her fur off on her belly and arms because she gets these bumps/scabs. We have her on cyclosporine (sp?) and that helps her. The house is old and the people who lived here before did NOT take care of it. Insulation soaking wet from bathroom leaks, etc. We gutted that area and installed all new insulation and sealed the basement and did everything we could think of but still...makes me wonder. We were going to get some testing done on the house a couple of years ago but had to cancel last minute. Now I know how important this is but don't have the $$. And honestly if our house was making me sick we would just end up moving. We wnat to move eventually anyway. Just would be a matter of making sure the new house was 'clean' too. So for me I don't know - I definitely think I got sick because of the trauma my body endured but who knows. maybe there is an environmental factor that is not helping things.

Thankful, I was interested to read your post because I just had a long conversation about this with a new doctor. I am switching pcp's and interviewed a new one last week. She has had a lot of experience with dysautonomia patients and actually has had 6 of them whom she was able to find an environmental trigger for. Once they were removed from those environments, it took a while - like a year - but they got better. She has been doing work with a very well known dys specialist and when she has time will be writing this up for a journal. Her take is that there can DEFINITELY be an environmental trigger for some people. Since you got sick during the time you were in this environment, I would strongly suggest making sure that ALL mold is gone before you move back in. This could be your key. Good luck!

Just some interesting information... I'm listening to Judy Mikovits, researcher @ the Whittemore Peterson Institute taking questions about XMRV. In talking about studies that are going on right now, she mentioned a study on XMRV & POTS. Samples from Vanderbilt being sent to the WPI institute for testing due to large overlap with CFS patients.

jump, the criteria for CFS is varied depending on which criteria you use. However, the hallmark symptom is post-exertional malaise. IF you do too much or try to exercise, are you bed-bound afterward or do you get sick?

If you're worried about weight gain, I wouldn't try paxil. Although I've never been on it myself (and that's the reason why!) I've seen several people gain a ton of weight on it. I have been on zoloft before w/ no weight gain.

This has been my problem really bad the last few days. In fact I went to my pcp today to figure out what was going on because I guess I have chilblains on my toes now - ouch! But I have no idea what is going on - can anybody speculate why this is happening NOW? Like why not last year or the year before when it was cold? Why now? Does this mean my pooling is getting worse? I've also been feeling like I have these ice blocks on my feet but then when I can get them warm they are itchy. This is all new to me though even though I've had pooling for a couple years. Just can't figure that part out. I did order some far infrared socks today and am interested to see how those feel. Wool socks aren't cutting it. Anybody know why this is happening now? Does this mean things are getting worse? I also was curious about compression - I wear 30/40 and was wondering if that made things worse because it is pushing blood away from the toes (right?) So wouldn't that mean that it would make blood flow in our feet (and thus chilblains) worse?

Rachel, Congratulations! And welcome, Adelaide! So how big did she end up being? I'm so glad that you are feeling as well as you could hope for. I hope you have lots of help and can try to rest up a bit. Thanks for sharing the news!

I'm sorry for the loss of your father. I lost my mom 7 years ago and I can attest to the fact that first of everything is the hardest - so this year's holidays are going to be very tough. Next year won't be easy by any means but it will be slightly better than this year. Each year it will get a bit easier although you're never going to stop missing him. But I do promise that it does get better!! Very smart of you to get your saline...do you ever take ativan or xanax or something? Maybe take a super super low dose just to get by - not to knock you out but to take the edge off.

Lenna, I'm curious if you're seeing the same doc as me. Would you mind pm'ing me w/ his name? I'd love to chat if it is the same guy, particularly about the LDN because I spoke w/ him about it recently and he wasn't all too sure yet...wonder if he's changed his mind.

Interesting thread...I've thought there was something odd going on w/ me and vitamin d but since it's supposed to help I didn't think it was possible. But maybe it is! I was taking the 50000/week dose and really felt crappy after I would take it - not immediately but the few days following. I have switched to 2000 of d3 (i have upped it to 6000/day to almost even out the 50000 units I would have had otherwise). I take that daily and don't think it makes me feel as icky.

Janey, Don't get down - I think it's AMAZING what you're doing. Really trying to do the most you can with what you have. That's impressive. I know it's so hard when the people we think should be most supportive hurt us like this. Just know that you are doing the best you can and that WE support you here.

If you want the whole story, check out http://www.wpinstitute.org/xmrv/index.html which will give you access to the actual Science article as well.

I am hoping to try this soon. I do know of someone else w/ dysautonomia who is taking it and has had pretty good results. She's only been on it for a matter of months at this point. I also have CFS/FM.

Although I can see how this line of thinking could hold water - especially if you bleed A LOT - I think most of the issues are due to hormonal changes. I myself have had a partial hysterectomy so even though I no longer have a uterus (and therefore do not bleed) I still have my ovaries - and therefore still cycle. Which means I go through all hte same stuff other women do - PMS, ups and downs of hormones, etc... and that's what seems to affect my dys.

I don't think what you're feeling is unusual at all! I think there are bunch of people on here who take BCP's just to suppress how many periods they get so that they don't have to deal with it. I can't take BCPs because of clotting issues but a hematologist recently gave the ok for a very low dose patch of estrogen for a few days around my period - interested/nervous to see how that goes.

Flop - This is NOT in your head. And I've been told/read that it does have to do w/ ans dysfunction. Also, do you sweat? I lost the ability to do so when I got sick (autonomic neuropathy) and I think that definitely does not help the situation because it's harder to cool down. I do find if I drink a large amount of very cold water it will help - seems to chill me at the core. But overall I still feel very sick in the summer - I dread summers!

Raman, If you read my response again, you'll see I don't mention anxiety, as I was merely addressing Dustin's fatigue/feeling 'ill' component. You, along with others, addressed his anxiety. So taken together, all of Dustin's concerns were addressed. No need to lash out at others. Dustin, Tachy is right - what helps some people may not help others. This is a learning process - so the best thing you can do is learn as much as you can - about what people post here and figuring out what applies to you. Good luck.

Dustin I'm so sorry you're having such a hard time. What you describe sounds an awful lot like CFS - chronic fatigue syndrome - which can often go hand in hand with dysautonomia. In fact, orthostatic intolerance is a key symptom to many CFS patients. You describe feeling 'ill' - something I feel often, and is part of CFS. Unfortunately there's no cure for CFS and most doctor wont' take you seriously. however, there ARE doctors out there that are educated and understand the science behind it (what science has been discovered so far, that is). I would recommend trying to find a doctor who specializes in CFS. Good luck.

I know EXACTLY how you feel. I have the exact same sensations. Even what you said about swallowing water. I hate this symptom more than any others. It was my first symptom 3 years ago and it was really really bad for almost a year. I went to doctor after doctor and had every test imaginable and they couldn't find anything wrong. yes, I heard 'anxiety' more times than not, but interestingly enough it was my psychiatrist who was adamant it was NOT anxiety. Long story short, there's been no explanation for this and I have just chalked it up to ans issues. It is much better than it used to be just I recently had a flare for some reason and it reminded me of how awful it is. Some things can set it off - like some medications - or weather - or who the heck knows what. I just hope that it will go away...

So I survived! My doctor is actually starting me really slowly and buidling up to the 'normal' dose of 1cc. Today I started w/ .25cc. Next week I'll go to .5, etc. It stung pretty bad going in and then I left and got in my car. As I was driving the only thing I noticed was that my feet felt warm - they NEVER feel warm. It was actually a nice feeling. Didn't last though. Anyway, glad that I made it through today!

I get my first b12 shot tomorrow and I'm really nervous! My body reacts so strongly to anything new even if it's 'natural' - so I'm really scared that I'm going to feel awful or weird. I read you can get very warm? Anybody have any input on this?

I get something similar - it feels like I can't get a complete breath in. I hate this symptom more than any others. It has gotten better for me over the years but right now it's flaring and I don't really know why. It's not hot nor humid here right now!

I don't know if you are referring to cranial sacral therapy but I have had it 2x and have had strong reactions both times. The first time was awful - my heart alternated between bradycardia and tachycardia, I had lots of weird surges and then the exhaustion hit. For a full 2 days. The second time wasn't quite as bad but I guess if we have a lot that needs to be fixed we're goign to have a strong reaction? I stopped going because I couldn't afford it anymore.