Dizzy Dame

Amy I hope the antibiotics help and you can go home soon! You're in my thoughts

Hugs,

Lauren

Thanks so much Emily for keeping us updated! I'm sure you're exhausted after nearly three weeks of all this uncertainty about Melissa's health. Hopefully now both of you are getting a bit more rest.

Melissa,

I'm so, so, SO happy that things are finally stabilizing and you're starting to feel even a little bit better! I hope the next week only brings more good health and more answers as to what caused all those nasties to attack you! You're still in my thoughts and prayers every day!

(((HUGS))))

-Lauren

Thanks Karen for updating us.

Melissa, You're still in my thoughts and prayers every day. I hope the transfer to the new hospital provides you with more answers as well as some comfort. Hopefully you'll come out of this soon and can return home and recover in your own bed.

Hugs,

Lauren

Melissa,

I was just thinking of you and thought I'd stop in and let you know you're still surrounded by love and good thoughts, even if some of those good thoughts are coming from far away. I hope you're able to sleep tonight, and that tomorrow they can come up with a good answer for you.

Hugs,

Lauren

Hi Tearose,

I can also relate to parts of what you're going through. And I echo Poohbear in writing down a list of goals for your trip, along with a list of questions you have. When I went to NC for my lyme workup, I also wrote a detailed medical history, giving a sentence or two for each major "health" event over the past few years. I also listed all the diagnositc tests I've had done, along with my multitude of diagnoses. Maybe compiling a similar list would be helpful.

Anyway, good luck on your trip to "Oz"! Hopefully you'll come home with some answers, and possibly a better treatment plan!

Hugs,

Lauren

I'm both hypovolemic and anemic. I was tested for it at Vanderbilt university, but I know they can also test for it at Johns Hopkins. The test is uncommon, and I'm pretty sure only a few university hospitals do it.

As for "tricks" I've learned to stay hydrated, I wish I had some. I just drink lots of water and eat lots of salty food. We're waiting to see how the lyme treatments work for me, but in a few months if I haven't improved we're going to try Procrit injections, which can boost red blood cells.

Some people get IV fluids on a regular basis for their hypovolemia. However, there are many risks to having a port or PICC line. I was offered a PICC line, but have been reluctant to get one because of the risk of infection.

However, some on the forum have had good luck with daily infusions, so it's really a personal choice.

Good luck getting the hypovolemia diagnosed. I think talking to your doctor about testing might be a good first step

Cheers,

Lauren

Melissa, I'll continue to pray for you and send you all the antibacterial/antifungal energy I can muster! I really hope that they figure out a way to give you some relief soon!

Hugs and hugs and hugs,

Lauren

Emily,

Thanks so much for keeping us updated on Melissa! You're such a good friend to so many of us!

Melissa,

I hope now that they found the nasties that are making you so sick, that you recover quickly and get back home to your comfy bed.

Hugs,

Lauren

I'm glad your doctor realized that antihistamines can cause tachycardia. I've had good luck with Allegra, but can't take Benadryl because it makes my heart rate soar.

One thing I always do, whenever I start any medication, is talk to my pharmacist. A good pharmacist will be able to tell you what drugs will interfere with your POTS and which won't. My pharmacist has kept me out of a lot of trouble with over-the-counter medications that would make my POTS much worse, or interact with my other meds.

Hi Lavender,

Two other things you may want to look into---on top of the immune disorder---are Mitochondrial dysfunction and lyme disease.

I hope you can get to the bottom of your symptoms!

-Lauren

Melissa, I'll be praying for you!!

Hi Rhada,

I took lemon juice. 1/4 cup fresh-squeezed every morning. It's supposed to help the liver detoxify the blood. Also, I've been taking undenatured wheat germ. It's another suppliment that's supposed to increase certain kinds of antibodies in the liver, to help sift toxins. If you're interested in the wheat germ, PM me and I'll send you some scholarly articles on it.

Have you spoken to your doctor about getting a saline IV drip for when you start antibiotics? I know a boy who has horrible herxes and uses a drip to help lessen their severity. Apparantly it helps.

But mostly I just had to weather through the really rough parts. There were several days where I wanted to stop treatment because I couldn't handle the symptoms, but I kept at it, and eventually made it out the other side.

I hope you can figure somthing out so you can take antibiotics!

-Lauren

Hi Guys,

I just wanted to give another update, because I know I'm not the only one on this board taking antibiotics for suspected/confirmed lyme disease, and we need all the "success" stories we can get.

The first month of antibiotics was brutal. All of my POTS symptoms went out of control, and I spent the last 2 weeks of December in bed, barely able to get to the bathroom and back.

But the clouds have parted, at least a little. Over the past few days, I've been creeping back up to my baseline, and I've already noticed some improvements from before treatment: I'm having an easier time sleeping, and my joint pain seems to be lessening. These may seem minor, but after that month of h***, any sign that the antibiotics are working is a welcome one.

I still have a long way to go...probably 6-12 months more of antibiotics, but I really think I'm on the road to recovery. And again, I think if any of you haven't figured out the cause of your POTS, and may have been exposed to ticks, you should consider getting evaluated by a lyme-knowledgable doctor. Lyme can cause POTS and is curable in most cases. Plus, a person can test negative for lyme and still have it, that's why it's so important to see a physician with experience in infectious diseases.

I hope you feel better soon! I had to learn the hard way as well when I first got sick. I started getting better for a few weeks, and went back to "life as normal"...it took me nearly 3 months to get over the ensuing crash. Hopefully it won't take you that long!

-Lauren

You can ask for the iodine-free contrast. They use it for people with iodine allergies, and it doesn't burn as much. It's a little unpleasant, but not too bad. I think it's the anxiety that causes people's rates to soar, I'm pretty sure the dye only feels weird, but doesn't affect the heart.

Good luck!

-Lauren

Oh, Melissa! You only just got home from your last infection As always, you'll be in my thoughts and prayers. I hope you're home again soon.

Hugs,

Lauren

Hi Kexia,

On blogger.com, if you start a blog you can make it private, so only people you choose can read it. All you have to do is go to the settings panel and select "permissions" then click the little button that says "only people I choose". I have a blog with blogger.com and it's really easy to navigate. I've posted a link below for you for blogger in case you want to give it a try:

www.blogger.com/signup.g

Good luck!

-Lauren

Hi Tyka,

I havne't "spoken" with you before, so welcome to the forum I hope you find many friends and answers during your time here!

If this joint pain is new, you should definitley speak with your doctor about it. As for what could be causing it: practically a million things. But I hope that you get some relief!

-Lauren

I can't speak for every hospital, but when I had my blood volume tested at Vanderbilt, they basically had me fast, then they injected me with some kind of tracking dye, then had me lay down on a table for four hours while they took blood every 30 minutes or so...I think that's how it went...but it's been nearly a year so I may have that wrong. I do know that accurate blood-volume testing can only be done at a few hospitals in the US. Johns Hopkins and Vanderbilt are the two I know of, but I think Mayo does it too.

As for what causes low blood volume, it can be a million things...kind of like it can be a million things that can cause POTS. In my case, my doctors believe my blood volume is low because of the lyme disease, which has been reported to cause a decrease in blood volume in some patients.

Sorry I can't be of more help. Where were you thinking of getting tested? Have you talked to your doctor about blood volume testing?

I get blue nails on both my toes and fingers, but it's attributed to raynaud's. Blue lips, however, sounds like poor overall oxigenization (sp?). Have you spoken with a pulmonologist or cardiologist about this?

Maxine,

I'm sorry you're going through all of this, especially on the holidays I can totally relate about family and friends not understanding. I lost almost all of my friends after I got sick...people kept waiting for me to get better, but when I didn't they went on their merry way.

I really hope you can find some kind of support network, because it's very difficult to be so sick and feel alone. We're always here for you, but as you know, the internet can't give you a hug

But for what it's worth, here's a cyber hug to tide you over (((((HUG)))))

Love,

Lauren

Hey guys,

I just wanted to update on the visual disturbances. I talked with my PCP about them a few days ago and she thinks they're related to my BP, since it's been especially unstable since I started the lyme treatment.

So no ghosts Just another funky POTS symptom

Also, be careful with drinking lots of Gatorade. Most people with POTS can't exercise, and gatorade has lots of sugar and will likely make you gain weight...weight that may be impossible to lose.

I used to drink gatorade but switched to water with 1/8 tsp of salt per liter. It adds up to about the same amount of sodium as gatorade but without all the sugar.

Happy Salting!

Congrats!!!!

I used to be afraid of public speaking. It does get easier as you gain experinence. I'm sure by your 5th class, it'll feel completely natural

Thanks guys. These disturbances happen both during the day and at night, and happen in my central vision...I'll be looking right at the disturbances sometimes.

I'm going to talk to my doc about it when I see her on Wed. Whatever it is, it's a bit unnerving.