Dizzy Dame

Good luck Jacquie! I know you've been suffering for a long time with this nausea, so hopefully they can figure out what's going on and get you some relief

OI tends to be a blanket term for any illness that causes a person to be unable to stand. Examples of conditions that cause OI are POTS, NCS/NMH. OI simply means, in plain english,"the inablity to stand".

POTS is defined as a heartrate increase of >30 bpm upon standing, with or without a signifigant drop in blood pressure (>20mmHg). POTS can cause OI in some, but others have POTS and have no real trouble standing.

I hope that makes sense!

-Lauren

Thanks everyone for your support!

I actually had another seizure last night, but this one was much milder. I didn't even go to the hospital because I knew they wouldn't be able to help me.

I'm really hoping I don't get any more, but we'll see.

Hugs to you all!

-Lauren

Hi Amy,

I'm glad you finally saw a LLMD! Although don't give up hope! I've heard of people who were sicker than we are who made great strides after being treated for lyme. Not everyone makes full recoveries, but almost everyone improves after lyme treatment. At least that's what my LLMD told me.

I'm glad you're starting IV antibiotics, and hopefully they'll make you feel better!

Hugs,

Lauren

"When Bad Things Happen to Good People" has helped me. But keep in mind that grieving is a natural part of acceptance, especially when it comes to losing one's health. I went though a grief stage for the first few months, but after awhile resolved that I WOULD get better and beat my illness. I've managed to stay in that frame of mind since then, although it is difficult to stay positive sometimes.

I really feel for you though! But remember that this too shall pass.

Hugs,

Lauren

I haven't had a hysterctomy but I'm praying for Poohbear! I hope everything works out for the best

Melissa, you're still in my thoughts and prayers! I'm so glad you're finally home, but am equally terrified for you. I can only imagine how anxiety inducing all the new treatments for you must be. Hopefully this will be the LAST hospital stay for a long time

Thanks Lois and Maggee

And Lois, of course I'm not upset that you referred me to Dr L.! She's been so wonderful and I can't thank you enough for helping me find her. I really don't know if I'd have the strength to continue on my journey if she wasn't carign for me, she's always so kind and supportive and I trust completely that she won't let anything bad happen to me (well, not anything that could be prevented).

I just hope all this suffering is a means to an end. I've been trying to stay positive, but 2007 has been a really bad year so far...and not just for me: it seems that everyone on the board is suffering right now.

Hugs to you both,

Lauren

Oh...that's disconcerting. I'm supposed to be starting lyrica soon.

I wish I could offer some advice, but I have none. Have you spoken with your POTS doc about the increase?

I hope things work out!

Hi Guys,

I had my first seizure last night. It was horrifying because I remained conscious through the whole thing...and swore to God and all the angels that I was dying.

After spending the night in the hospital, the ER doc finally managed to figure out that I"d either had what's called a "simple partial seizure" or a "complex partial seizure". We need to do more testing, I guess, before we can figure out exactly what's going on, but my doctors agree that it probably has something to do with the lyme bacteria inflaming my brain stem.

Has anyone had these kinds of seizures before? Also, I was prescribed lyrica, does anyone have experience with this drug? Any words of wisdom?

-Lauren

Good luck Amy!!!

Please let us know how it goes when you get back and have the engergy

Hi Rachel,

I'd suggest telling them your concerns before you begin your evaluation. Also, don't overdo it. I used to kill myself with diagnostics, but now I let myself stop if I start feeling too bad...which I feel has really helped me take better care of myself.

Good luck! I hope they can find some new answers/treatments for you that make your life better!

Hugs,

Lauren

Muscle weakness after exertion can be a sign of several different neurologcal problems. Myasthenia Gravis is the first thing that came to mind, but there are others.

If this has occured more than once and is new for you, I'd suggest making an appointment with a good neurologist.

Thanks Em for the update

Melissa, I'm glad that they're now able to give you meds through your IV line! And also that you got to sit up for a bit! I hope the hospital gives you some kind of trophy or medal for being such a trooper through all this...although I'm sure your doctors deserve kudos as well!

5 weeks in the hospital is yucky. As soon as I feel well enough myself, I'm going to mail you a care-package...but I need to be able to walk into the post office without fainting first

I really hope things only improve for you, you definitley deserve a rest dear!

Hugs,

Lauren

This is good

While I don't have CFS, I have friends with the disease, and I know that the name does NOT fit with the disease. CFS is so much more than being "tired", it can be as debilitating as POTS for some patients.

I'm so glad they changed the name, so that those suffering with CFS...or ME Can feel more like the severity of their illness is being acknowledged.

Hi guys,

I just wanted to give an update, because the last time I posted, my life was essentially falling apart. Carl has decided to stay for a little while longer, but he's still planning on leaving this spring or summer.

In the meantime, I figured out that I could take out more student loans to pay for my living expenses, and I don't have to pay them back until I graduate from graduate school (which should be 3-4 years from now). By then my doctors are all pretty confident I'll be able to work.

This means that I can pay for a caretaker without having to move or try to tangle with government services...which I'm sure I wouldn't qualify for anyway.

So everything seems to be great...or at least tolerable.

Thanks again for everyone's prayers and thoughts, I'm sure those are a big part of why I made it through this rough spell relativley unscathed.

Hugs to you all!

-Lauren

I'm about 6-9 minutes on an average day, 10-20 minutes on a really good day, and 0-5 minutes on a bad day.

Hi Donna,

Don't give up hope!!! Many of us have felt before like we were going to die (and some have even been told by incompetent doctors that we were). If your doctors don't know what you have or how to treat it, how can they give any prediction for your future???

I'd call Mayo or Vanderbilt or another big clinic right away. If your PCP is someone you think could help, ask him/her to get you an appointment. Be agressive. Don't let them push you aside. If you make enough noise, they will pay attention and spring to action.

One of the things I've learned during my illness is you have to fight tooth and nail to get the attention you need. When doctors are at a loss, unfortunately many of them react by ignoring the patient, blaming the patient or saying "there's nothing I can do." It's true, there's nothing they can do for you, but there are doctors out there who can help.

I know how rough you must feel right now, and I know how difficult it is to be sooo sick and having to fight for what you need to survive...I'm in a bit of a similar situation myself right now. But I know that if you fight and make noise, you will eventually get the treatment you need.

Please let me know if you need phone numbers or doctor's names or anything, just send me a PM and I'll try to help.

((Hugs)) and hold on dear!

-Lauren

Thanks again guys for your advice and support! I still don't quite know what's going to happen, but I have some good leads now thanks to all of you! I'll post again when I have a better idea about things...right now I'm just trying to overcome the shock of the situation, but I'll start making phone calls to charities, agencies and the like very soon.

Hugs to all of you!

-Lauren

Does anyone know how Melissa's doing? I've been so worried, but I assume no news is good news?

Thanks so much Em for all the support and suggestioons.

I guess I saw Carl's departure coming down the road. We even discussed him moving back to Hawaii sometime this year...but we'd always agreed that before he did anything, I'd need to be more self-sufficient. But I understand why he's leaving. For the past 1 1/2 years he's been my only support system, which is alot to ask considering we aren't married, and both of us are so young. I don't blame him for wanting out, I just wish it had come at a better time.

My financial situation is kind of tricky, because my parents pay my rent and living expenses, and while they technically have the money to pay for a full-time caretaker, they'd have to curtail their own lifestyle in order to afford it, and they've let me know they're unwilling to make that financial sacrifice. (Living with them is also not an option at this point...so I'm really stuck.)

Because of this, I'm really worried I won't qualify for government services...I'm not sure if I count as a dependent and they'll judge my income based on what my family makes, or if I classify as an independent, and my monthly budget is the only thing counted. It's all very confusing.

All the stress and grief of this past week has made me even sicker too! I honestly wonder sometimes how I can possibly make it through this difficult time.

Thanks all of you for your support and suggestions! I've managed to get the number for the human services department for MD, and I'm meeting with my PCP next week to discuss my options. I'm still broken-hearted...and nothing is going to fix that, but at least I'm on my way to (hopefully) getting the help I need.

Hi Guys,

I've been waiting to post because I was hoping things would just work out on their own, but it's gotten so bad and I'm completely out of ideas.

Two weeks ago I developed "reactive hypoglycemia" and had to go off the antibiotics that are treating my lyme disease. My body was/is just too weak to handle and the bacteria that are dying off, and my adrenal glands became affected. We're going to re-start in a few weeks, but my doctors have told me that this could possibly happen again...

Since then, I've been pretty much bed bound and my boyfriend has had to take several weeks off of work to take care of me. Unfortunately, the strain of all of this has ended our relationship. He's getting ready to move out after three years of being together.

While I'm very upset about the relationship ending, I'm also worried because I need a caretaker all the time now, and my insurance doesn't pay for what they consider "custodial care". I don't have any family members who would be willing/able to help out, so I'm kind of stuck in a really bad situation.

Do any of you know of services (be they government or private) that could help me? Right now I need care pretty much 12 hours a day, and I can't afford that kind of treatment. Any information you could pass on would be so helpful!

Thanks,

Lauren

Amy,

I'm so glad you're home and on your way to feeling better! and good luck with your LLMD appointment! Hopefully the new doc will have some ideas that can get you healthier sooner!

Hugs,

Lauren

Melissa, you're in my thoughts and prayers often. I imagine this has probably been the most difficult month of your life and I wish so much that I could do something to make it more tolerable. Just know that all of us here at DINET are rooting and cheering for you...we're like your little cheerleading squad (of course, we'd all faint if we tried to make a pyramid for you, but it's the thought that counts, right?).

I really hope your trip to U of M tomorrow brings you answers, and that it isn't too exhausting or traumatic. And I hope you get lots of restful sleep tonight!

Hugs,

Lauren