Dizzy Dame

Malsop, It's so good to hear stories like yours. I'm about to start lyme treatment, and have been scared that I've had lyme too long to improve, but when I read posts like yours I think "maybe it could happen to me too." I'm so glad you're feeling better and the antibiotics are working. Keep us updated on your sucess!!! Hugs, Lauren

(((((BIG HUGS))))) Linda. I'm glad you're FINALLY starting to get some answers, and hopefully soon you'll get more. I'm sure you're exhausted from your trip, so I hope you get lots of rest! -Lauren

No, passing the EMG (the shock test) and the sweat test do not rule out POTS. POTS is diagnosed based on an increase of HR of 30 beats or more upon standing. However, getting a POTS diagnosis does not really help with finding the cause of the problem. POTS is more a finding, just like if someone has high blood pressure, or being diagnosed with Chronic Fatigue Syndrome...none are really diseases, they're products of another process. I think the best way to rule out adrenal problems is to go see an endocrineologist. I should warn you though, that some people never find a cause for thier POTS, however, that's no reason to stop trying.

I'm glad it went smoothly! Does your doctor think your surge in symptoms has to do with herxing or does he/she think it's because of something else? I'm glad you're getting the help you need! -Lauren

Ernie, They should not have discharged you with you being so weak. Have you thought about talking to a lawyer? I'm not suggesting you sue (yet) but at least you could find out what rights you have as a patient. I'm pretty sure here in the US ER's can't turn away patients, but I'm not sure if it's that way in Canada. ((((HUGS))))) -Lauren

I called my PCP's office a few days ago to get them to refill my mestinon and midodrine. It was the first time I've had to have either prescription refilled, but I expected that my PCP would be the one to do it. However, today they called me back and said my doctor was "uncomfortable" filling those prescriptions and that I should go through my prescribing doctor. However, when I called my prescribing doctors (one at Vandy, the other at Hopkins) they both said that my PCP should refill those presciptions, that it "wasn't their job". My PCP's office has "temporarily" refilled the prescriptions, but told me I needed to find a neurologist who will manage those medications. However, I don't know what to do. I've made an appointment with a neuro, but what am I supposed to say to them, "I don't need a diagnosis from you, just please give me my drugs and don't ask questions?" I'm terrified my prescriptions are going to run out at the end of the month and no one will refill them. The last time I missed a dose of my medication, I ended up in the ER. What if that happens again and no one will give me my meds? I can't belive this is happening. This isn't morphine I'm asking for...these are BLOOD PRESSURE medications! Do I have any legal rights to these meds? Can my doctors really refuse to refill the prescriptions because they feel it's not their "job"? What happens if I run out of my meds? Sorry to feak out so horribly! I just don't know what to do...and the clock is ticking. -Lauren

Thanks Maxine and Ariella I definitely appreciate my lyme doctor. While I've met other caring doctors along the way, none have really been able to give me an answer as to why I fell so ill so quickly, and why I was having other neurological symptoms that couldn't be explained by POTS alone. I hope that all the members on this forum who don't have answers can find them, and that we all find good doctors who really listen to what our bodies are telling them. Hugs, Lauren

I don't take clonodine, but I know that if I miss a dose of my meds, my heart goes crazy. The last time I missed my midodrine, I ended up in the ER with tachy that was out-of-control. I know the general rule when taking meds for the heart is to never miss a dose. Our bodies become dependent on these medications, so when we're off of them, we're often in a lurch. Hopefully someone here can help you with your clonodine question. -Lauren

I've gained a bit of weight since getting sick. This is only because of my large gatorade intake, as I barely eat anything. When I first got sick, I drank water instead of gatorade and lost nearly 30 pounds. The gatorade helps maintain my weight...but also has made me gain some. One of the things I've done to try to lose weight is to drink less gatorade. However, drinking lots of water without getting enough salt and potassium can be dangerous, so it's a fine balance. It is frustrating, I know, because none of us can really exercise to get the weight off, and dieting makes many of us much sicker. I've had to learn to be a little less vain beacuse of the illness...but that doesn't make it any less depressing when I look in the mirror and see flab where muscles used to be

Coming to terms with chronic illness is not for the faint of heart. I had to go into counseling shortly after being diagnosed because my depression over my illness spiraled out of control. Fortunately my therapist has been a life-saver (literally) and has helped me muster the strength to keep fighting for answers despite the utterly broken state of our medical system. I know that many if not all of us on this forum can relate to your anger and feelings of helplessness. However, this too shall pass. It's horrible now, but remember that most people with POTS eventually improve, and there are many little tricks you can learn to minimize it's effect on your life. I hope you start to feel a bit better! -Lauren

Oh Linda you poor thing I find it hard to believe that these doctors can't be reasoned with. Hopefully if you tell them about your concerns they'll see putting you though another tilt test is just cruel and unusual punishment! BTW-I hope you do get the procrit approved! I've heard it's a miracle drug for some. (((HUGS))) -Lauren

It's so good to hear from you Sonotech! But I'm so sorry that your health has been declining. I went through a period when I first got sick were I had to be bathed, and it was humiliating (despite the fact that my boyfriend never complained). One of the things that helped was he'd shower with me and I'd sit in my shower chair while he shampooed my hair and helped scrub me. That way it felt like we were just taking a shower together, and less like a care-taker/patient relationship. Maybe you and your husband could do something similar? Anyway, it is so good to hear from you, and hopefully your body will recover a bit more in the coming weeks and you'll start to feel a bit better. But in the meantime... ((((HUGS)))) -Lauren

Hi and welcome to the forum I'm sorry you have to be here, but I'm glad you found us! You'll find (if you haven't already) that there are many here with EDS. I've heard of tilt-training, but from my understanding, it has only been studied in those with ideopathic NCS; meaning people who have NCS but are otherwise healthy. Because you have EDS, I'd definitely consult with your neurologist about tilt-training. It may not be advised in those with EDS, and you don't want to risk your skull, and waste the precious energy you have trying a treatment that may not be effective, you know? -Lauren

It's good to hear from you Emily! I've been a little worried about how you're doing since your doctors appointment (we had lyme appoitments on the same day right?) I am very glad I got this diagnosis "quickly" although I've technically been sick for 6 years...I've only been super-sick for 1 year and 3 months. The doctor in NC estimated that my lyme was semi-latent in my body for many years, and finally a stress last summer was the straw that broke my immune system's back. Anyway, the probiotics he reccomended are "Jarro-Dophilus EPS" by "Naturally Healthy Trinity". You can order them from this number: 800-366-6056. Mine haven't come in the mail yet, so I'm not sure about how much bacteria each pill contains, but when they come in I'll let you know.

Nina, thanks for posting about the shot glasses! My meds now no longer fit into the pill box and I've been worried I'll foget to take some of them. I'll start using the shot glases for my Mid-day meds (since those are the most bulky as that's when I take all my suppliments). Thanks again

Hey Linda It's good to see you on the forum...so many of us have been in POTS holes lately. The answer is a definite "yes" when it comes to testing negative for Lyme but still having it. From my reading, it's pretty much universally acknowledged (even by the CDC) that a negative lyme test does not exclude lyme disease, and that a diagnosis of lyme disease must usually be a clinical one. From my understanding there are two widely accepted interpretations for how to diagnose lyme, each is similar to the other, but they have their differences: 1. The CDC interpretation: "Lyme disease is diagnosed based on symptoms, objective physical findings (such as erythema migraines, facial palsy, or arthritis), and a history of possible exposure to infected ticks. Validated laboratory tests can be very helpful but are not generally recommended when a patient has erythema migraines"....Article continues You can read more of this article here: http://www.cdc.gov/ncidod/dvbid/lyme/ld_hu...e_diagnosis.htm 2. The International Lyme Disease and Associated Diseases Society (ILDAS): "The ELISA screening test is unreliable. The test misses 35% of culture proven Lyme disease (only 65% sensitivity) and is unacceptable as the first step of a two-step screening protocol. By definition, a screening test should have at least 95% sensitivity"...Article continues You can read the rest of this article here: http://www.ilads.org/basic.html ...of course, lyme disease research and treatment is a very murky area of medicine right now, and as such is rife with contradictory literature, quackish doctors, and ridiculous treatment recommendations. Just from personal experience, I'd recommend anyone who thinks they may be infected and wants to peruse a lyme diagnosis be very careful when choosing a physician to diagnose. The same should be said when doing research online: there are literally hundreds of bogus articles out there which make rediculous assertions (some of these even say lyme is an STD and that lyme is fatal)

My dentist's assistant accidentally gave me the novocaine with Epi last time I had a cavity filled. My heart raced pretty bad for about 1-2 minutes but the epi cleared from my system quickly and I didn't have any problems afterwards. However, the tachycardia that the epi induced was pretty uncomfortable...but not too dangerous (my HR only got up to about 120, and my BP didn't get too high either, despite the fact that I was on Midodrine at the time). Of course, talk to your doc to make sure it's okay. Hopefully if you do have to have the epi, you'll only feel it's effects for a short period of time. -Lauren

Hi Pam, Thanks for the support! And yes, I'm much happier with this lyme doc. After talking with him in the appointment, and researching his academic articles online, I feel confident that he'll be responsible and prudent when treating my lyme infection. The doctor did prescribe a whole slew of vitamins and suppliments, which are supposed to get my immune system ready for the arduous task of killing the lyme bacteria next month. Here's a list of what he put me on, and how each is supposed to help. I take one pill of each per day: Vitamin B Complex: Assist the metabolism of carbohydrates, protein and fat. They also may improve cognitive function and lessen symptoms of neuropathy. Probiotics: Naturally occuring bacteria in the gastrointestinal tract. Long-term use of antibiotics can affect the levels of these bacteria in the GI tract. Taking probiotics will help replenish the lost bacteria. Coenzyme Q10: A powerful antioxidant that functions as an essential cofactor in the mitochondria electron transport chain and in cellular energy production. It is essential for healthy heart and nerve function and may reduce fatigue and stimulate nerve function. Omega 3's: Fatty acids found in cold water fish. Used to improve cholesterol ratious and can act as anti-inflammatory agents. They are also known to have immune-stimulating properties. Quercetin: Improves effectiveness of antibiotics, stimulates immune function, and has some anti-inflammitory and anti-histamine properties. Alpha Lipolic Acid: May increase cellular glutathione leves. Used to prevent and treat neuropathy and augments antibody response. Of course, you should talk to your doc before taking any suppliments...especially given how sensitive us POTSsies are to new chemicals -Lauren

I drive, but that wasn't always the case. When I first got sick, I was bedridden most days, and on days when I was well enough to leave the bed, I often fainted or collapsed (without fainting) without much notice. However, over time, as my symptoms improved, I learned to tell the early warning signs for when I was going to faint. Also, the use of Midodrine meant that my BP was usually under control when sitting (but not standing). These two factors allowed me to feel comfortable driving short distances (less than 1-2 miles). Now my syncope is totally under control. I haven't fainted or collapsed since April (knock on wood) so I currently feel comfortable driving for up to 20 minutes, but I try to avoid stressful traffic situations that can exaccerbate my symptoms (like rush-hour traffic). I also tend to drive only during my best times of the day, and I never drive at night when my symptoms are worse. Hopefully you'll feel well enough to drive again! Just keep thinking positive: most people with POTS do improve with time and proper treatment. -Lauren

Hi Linda, I'm glad you're back from mayo, and that the doctors seem to be taking your very disturbing symptoms seriously. I've never had anything close to what you describe after eating. I occasionally get a bloated stomach, but not the pain or flushing. Anyway, I hope you can start to get some answers as to what's happening with you. We can all relate to how terrifying your experience has been, but hopefully you can find a treatment that will allow you to bypass these scary episodes. Hugs, Lauren

Thanks Melissa! It's good to "see" you on the forum. I've been really worried about you. Are you feeling any better since you last updated? How are your liver enzymes? Thanks again for the support Lauren

Hi Nikigirl, As the links above may have already told you, Shy Drager can have overlapping symptoms with POTS, but it is much less common that POTS, and it also tends to affect older men, rather than young women. So hopefully you don't have anything to worry about. Have you been to see a POTS or autonomic specialist yet? You would probably get some peace of mind if you were able to get in with an expert and get the POTS diagnosis solidified. Anyway, I hope you start getting some answers, I know how scary it is to wonder what you have and not know how bad it's going to get. Hang in there, Lauren

No. That is not typical of POTS for your BP to drop at all. POTS is classified as an increase in heart rate of greater than 20bpm upon standing without a decrease in blood pressure. A decrease in blood pressure upon standing is often called Neurally Mediated Hypotension (NMH) or Orthostatic Hypotension and is more often associated with pure autonomic failure and other such autonomic neuropathies. I've posted links to some articles you may find helpful, you can also do a search for yourself on e-medicine to find more scholarly articles on OH. But I feel the best thing for you to do is go see a neurologist or cardiologist who can help you. Orthostatic hypotension can be indicative of something very serious, so it's really important you see someone who has experience with autonomic neuropathy who can effectively diagnose you. Okay here're the links: http://www.mc.vanderbilt.edu/root/vumc.php...dc&doc=4790 http://www.emedicine.com/neuro/topic609.htm

Sounds like you're channeling your rage in the right place: at him rather than yourself. I know that one day you'll meet a fantastic guy who loves you for you!

Hopefully the Midodrine will help. I know it really helped me alot once I started taking it. Although it makes my scalp tingle a bit when it first starts working. You may find that side effect annoying...although I kind of like it because it lets me know when my meds have kicked in. Let us know how you do on the new meds -Lauren