marnian

It's hardly "proof" but I used a wheelchair for a few months and don't use one at all anymore. I have 2 main problems with your cardiologist's claims. 1) Using a wheelchair is pretty frustrating - it would be a rare, rare person that didn't do everything possible to get back out of the wheelchair. 2) If you do end up needing a wheelchair for the rest of your life - so be it! I mean, I much rather have a job I enjoy and need a wheelchair for everything than let the rest of my life fall apart. I might see if you can find a new doctor...he doesn't sound very compassionate.

I went to work for a few weeks in a wheelchair. I was strong enough to push the manual type around for short distances and it was a great help. I was much, much less tired at the end of the day without the constant standing. For longer trips (like to the cafeteria for lunch) my coworkers didn't seem to mind pushing me. As soon as I could comfortably walk the distances involved, I returned the (rented) wheelchair, but on bad days I sometimes wish I still had it. It definitely decreases the total amount of energy a day takes. I'd expect your doctors to undertand that. Also, on a personal note, being in a wheelchair does change the way that people interact with you. I didn't have any of the negative experiences that many people on these boards mention fortunately. My experience was that people were much more respecful, offered to help more, started conversations with me when before they would have just ignored me etc. But it was a very very odd feeling. It wasn't like _I_ had changed at all.

I really like the "high protein" banana ensure. It was a main source of nutrition for awhile, but even after I was back to eating regular meals I still had it for breakfast a lot.

I feel sick (dizzy, vision blacks out) right away and then it fades within a few seconds. For about 2-4 minutes I feel okay, then I slowly get worse and worse. If I'm walking I can make it for a half an hour or more, but standing still I have to sit down by 10 minutes. Apparently I can actually stay standing for a whole 45 minutes without fainting, but well before that point I'm unbelievably dizzy, nauseous, my heart is pounding, and I can't see. And I feel horrible for hours afterwards. Of course, this is all WITH my medicine. There was a point where I couldn't stand for 2 minutes at all.

At about the same time I was diagnosed with POTS they also noticed my vitamin D level was very low. I took lots of vitamin D for awhile with no noticeable effects (bad or good). For 2 months I took a prescription dose, then another few months of over-the-counter vitamins. The levels in my blood increased, but my doctor didn't think it was actually causing any symptoms anyway.

Welcome! I think a lot of us have had better times and worse times. I'd like to add my recent experiences since you asked about someone who was bedridden and then got better. I spent last summer in a hospital, in a nursing home, and then home mostly in bed. But by the fall I was going to work part-time in a wheelchair, then a a few more hours without even needing the wheelchair, and I've just gone back to working full-time. I'm still really struggling to work full-time (my days off I rarely make it off the couch and such), but I'm doing about 500% better than I was this summer. I figure it's some combination of medicine, luck, and determination. My temperature seems to flucuate too, but not as dramatically as yours. And it doesn't really seem to be tied to much of anything. Although I have noticed that if I feel feverish sometimes my temperature is actually low (around 95.5-96.5) rather than high. Do you notice that low temperatures make you feel bad or is it just odd?

I take florinef and propranolol (a beta blocker). With midodrine, the combination seems to work pretty well for me.

I take 10mg twice a day. Once in the morning and then again in the afternoon/evening when I begin feeling tachy again. I've taken as much as 20mg 4 times a day, but it made me faint even though I felt better when I wasn't fainting.

I've been on Diamox before (to reduce cerebrospinal fluid that was causing headaches and pressure behind my eyes). There are a few weird side effects that a lot of doctors forget to mention. Obviously, everyone has their own experiences, but a lot of people feel their hands/feet tingle and even more people notice carbonated beverages taste really funny. Just a heads up!

Obviously, everyone has different experiences, but you said you wanted GOOD ones... I've been on florinef for 4 months. It's definitely helped me and hasn't had any noticeable side effects. I've been lucky with most medicines, but florinef has been particularly easy for me.

I think it's best to go to the doctor if you have a sore throat. The test for strep is fast and it can save you a lot of suffering. Untreated strep can lead to worse things (which I found out the hard way). Regardless, I hope you feel better soon!

I'm working 15-20 hours a week now, but in August I wasn't working at all and I spent a lot of July in a hospital/nursing home. Medicine and exercise is definitely helping, but compression stockings made the most immediate difference. I used a wheelchair for a few weeks until I started feeling better. I've been able to work a few more hours each week. I feel very lucky to have a job where I can sit all day, take breaks, and work very flexible hours. Just being able to work at all has really helped my confidence too. I'm exhausted, but it seems worth it.

I hope you feel better! I'll send good thoughts in your direction. I know that Hopkins will sometimes do an MRI on someone that has a pacemaker, but it's a big ordeal. Just make sure everyone knows. Don't hesitate to keep repeating that you're concerned about it. At the very least, they should have extra doctors on hand.

Hopefully someone will have better experiences, but: Reglan (by IV) triggered a panic attack that was bad enough everyone thought I was having an allergic reaction to it. I'd never had a panic attack before so I had no idea what was going on, but I was in the hospital so it was pretty easy to fix. A friend's mother has mild panic symptoms with Reglan, but she finds it to be effective enough to deal with this side effect. I think this is very rare, but a variety of mental side effects are listed so you should watch for mood changes when you take it.

I like the Trader Darwins chewable multivitamins for kids you can get from Trader Joes. It has glucose syrup and sucrose in it, but no artificial sweeteners.

I can share my experience at least (but keep in mind that you may be different). 1. Midodrine helped me start doing physical therapy almost instantly, but the two together made me feel better over a week or two. It's hard for me to separate the two. 2. I take both florinef and midodrine. 3. I don't find the chills to be as horrible anymore, but they're still pretty bothersome 4. I was not fainting when I started midodrine. I take 10mg 3x/day. (I'm not sure about the rest, but hopefully someone else can help)

I'm so sorry...that sounds so horrible! I'm thinking about you and sending positive thoughts in your direction! Maybe you could call your local hospitals and ask if there are any programs to help you get to appointments there? I know my area has almost free transportation for people that have no other way to get to the doctors. A lot of churches/synagogues/etc also have various volunteers in place. If you'd be comfortable with one in your area, you could call and ask for help. I was able to find someone to talk to on the phone regularly that way. I found it comforting to have someone calling me to see how I was doing and so forth. They also offered help with groceries, getting to appointments and such. Hugs! Marnian

Thank you so much Maxine!!! Trying to eat a few cherios sounds better than the occasional saltines I've managed since they have more vitamins. And the canned fruit sounds worth trying since baby applesauce has been okay. Thanks again for your detailed answer. -Marnian

I had an EGD that showed inflammation and food left in my stomach (even though the most recent thing I had drank/eaten was 2 saltines with gatorade over 12 hours before). I had a gastric emptying study that showed "slow gastric emptying" but I wasn't given any specific details other than that it was abnormal. I have POTS and increased intracranial pressure (probably unrelated) so I've had a million other tests to get to those diagnoses. The current theory is that I got sick with "something" that triggered a bunch of symtoms (this all started with a cold in June that led to hospitalization in July so I'm still actively going to doctors now).

My gastroenterologist got back to me about all my recent tummy tests. The basic conclusion was that there's no obstruction etc, but inflamation and delayed emptying. I'm on protonix for the inflamation, zofran for the nausea, and trying zelnorm at a low dose to see if it helps move the whole system along. But here's the problem: My doc said I should start eating more and more solid foods. I've been on a mostly liquid diet for 6 weeks after I began to rapidly lose weight with these tummy problems. I'm able to keep down Ensure-like things and it's really helped me feel better and slow down the weight loss. But this doc said to stop drinking those things and do the best I can with solid foods (although avoiding fat and fiber). That I should deal with the pain/nausea/vomiting it causes for awhile. He said that I would turn a moderate problem into a severe problem by continuing to "give into it". But that I might be able to reverse it through the right diet. Have you ever heard of this? What do I do?!?

Hugs and prayers from me as well.

You might be able to get special permission from your insurance company to take Zofran with a normal copay. It's at least worth looking into. One of my doctors was able to convince my insurance company that Zofran would keep me out of the hospital (definitely true!). Since Zofran is so darned expensive it's tricky, but it's still much less expensive than hospitalization. Even insurance companies can do that math!

The CDC criteria for a positive WB are as follows: For IgM, 2 of the following three bands: OspC (22-25), 39 and 41. For IgG, 5 of the following ten bands: 18, OspC (22-25), 28, 30, 39, 41, 45, 58, 66 and 93. But this was determined by statistical sampling and many doctors believe it's less straightforward than that. For example, some doctors/papers say that band 39 is specific for lyme but band 41 is not (other past spirochete exposure can cause it). Also, some doctors believe that in late stages of lyme, the IgG standard should be used, not the IgM. For what it's worth, I had a IgM WB with 1 band positive and a IgG WB with 4 bands positive which my doctor decided was worth treating based on my symptoms even though it didn't strictly meet the CDC criteria. After a few months of antibiotics I felt much better. On a test 2 years later, all the bands were negative so presumably the treatment was appropriate. But again, I'm definitely not a doctor.

It probably depends a lot on how badly you feel due to the tachycardia. For me at least, the tachy was unbareable without being brought down. I couldn't even walk more than a few steps. But exactly as you suspected, high doses of beta blockers do make some people more dizzy etc. The best way to tell for you is to try and see how it goes unfortunately... Your base line blood pressure should probably help your cardio figure out a good approach though. P.S I found that midodrine and florinef in combination with a very low dose of a beta blocker works best for me.

This is great! I laughed and laughed. Particularly about the Zofran...I was so happy to get a letter from my insurance company approving Zofran for the year, my boyfriend thought I had won the lottery. He didn't seem to truly appreciate that it WAS the lottery as far as I was concerned. My additions: You've used the phrase "Today was great - I only fainted twice!" without sarcasm. You put your stockings on before you get out of bed in the morning. You've met enough specialists to start your own hospital. But even at that hospital they wouldn't know what to do for you.