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Name: Kim Birthplace: Fayettville, NC Kids: 1 17 yr old son, 1 19 yr old daughter Pets: 1 dog, 1 saltwater tank/1 freshwater tank. (daughter always trying to add more pets. Have had snaping turtles, iguanas, lizards, mice, rats, cats, dogs, frogs, scorpions, birds...our house is a pit stop for every unwanted pet.) Favorite color: green, I hate winter!!! Favorite flower: tulips Kitchen theme: bird houses Favorite drink: water, isn't that crazy! Last TV show you watched: Lost Last movie you rented: Bought the newest Left Behind DVD Favorite food: Chocolate Favorite TV show: Lost, funniest videos Red or Pink: Pink Favorite ice cream: moose tracks Favorite crayon color: Periwinkle Ever bungee jumped? Nope Eye color: Brown Hair color: Brown Farthest you have ever been: FL Siblings: 1 sister Last time you cried: felt like it yesterday Favorite game: canasta Black or White? white Rollingstones or The Beatles: Credance Clearwater Last food you ate: Banana bread Diamonds or sapphires: diamonds Beach or the mountains: Beach Sweats or jeans: jeans Ever went skinny dipping: YES Married more than once: no What book are you reading now: When Bad Things Happen to Good People (Dr. Grubb sent it to me last week-He's so sweet.) Hobbies: camping, biking, hiking (when I feel better) Anything in the woods or parks! Favorite actor: not sure Favorite actress: not sure Favorite candy bar: heath bar Ever toilet papered someones house: no Gatorade: strawberry Favorite Fruit: kiwi and bananas Men with facial hair? Mine finally shaved, it's nice Steak or lobster: lobster Gold or silver: Gold

Hi, Just to let you know I had myself almost convinced I was a hypochondriac until I was diagnosed! A couple of "specialist" even suggested it!!! I can tell you when I found this wonderful forum of compassionate friends it has made all the difference for me. I was feeling so alone and lost, with no one who really understood how I was feeling. Everyone kept telling me, You look ok? Why don't you go back to work? Why are you always complaining? I felt like I was physically falling apart and just about everyone thought I was exagerating. My friends and family are finally "educatated" in my condition and are really there for me now. But it was a hard year. I just wanted to welcome you and let you know your not alone. Take Care, Kim

Blackbirdsings, I'm sorry your having a tough time, I do hope your feeling better soon. She didn't explain anything about the test kit, just that when they got my deposit they are mailing it right out. If it doesn't come with instructions I'll have to call them back. Do you think any hospital lab will do it for me? Do they send a script for it in the kit? Do you think the'd let me FedEx it myself so I know it was sent out quickly? I guess I should call and ask Dr.'s office all this. I didn't think about all this when I had them on the phone. I'm lucky lately I can remember anything. Take care and Thanks. Kim

I know what you mean about sneaky, it comes on slowly over several weeks. One day I was sitting watching tv and relized I felt deeply in despair. It took me awhial before I put 2 and 2 together. I didn't even relize it was happening to me. I hate meds, they do some very scarry stuff to you sometimes. I aquired a med phobia along the way. I hate to try new ones. Kim

I got to talk to the llmd office and I'm so happy the Dr is on my health plan. They are sending me a test kit in the mail, that I guess I take to a lab and get my blood drawn and then sent to CA to a lab they use for testing. Then I go on April 26th to PA for my appointment. He's only an hour and 30 min from me so it's not that bad. I just want to rule this out for my peace of mind. I have so many crazy symptoms going on. Kim[]

Atenolo gave me the fatigue, then the blues, then an overwhelming sadness feeling, real creepy. Dr. Changed it to Metoproplol (I can't spell when I'm sleepy) The overwhelming sadness feeling went away but the fatique stayed. I don't know if it was the beta blockers or florinef but I dreamed so much every night I really think I wore myself out! Some where crazy dreams, some I did everyday stuff like cleaned my house and some were downright scarry. Dr. Grubb took me off both and volume of dreams stopped. I will take a beta blocker every once in a while though when my heart rate won't calm down, and I just can't take it anymore and it brings it down and I feel better. Kim

Just thought I'd share this. Dr. told me to find someplace close to house that has resistance machines, so I don't hurt myself again and after shopping and checking them out, wow are they expensive! I'm am considering going to Bally's because they are running a special called "meet your potential" until 3/31/06. They also have pay month to month plan and you don't have to sign a contract. I have been trying to work out with my hubby's help at home with free weights and it's to hard to do lower body and I keep hurting myself. Dr. Grubb said the machines they have in gyms are better. Also most bally's have a pool. I'm still deciding but it sounds good. Anyone in the Parma area of Ohio want to join too and we can have a POTS workout club! LOL it's an idea? Kim

The over the counter med you want is "AzoTabs" Urinary Tract Analgesic, it is really good at helping with the pain before the antiobiotic kicks in. You just don't want to take it before going to doc cuz it does something that they can't get a good culture and they can't check white count in urine. I think. There is a similar med that is rx only but I think it is just a stronger version of same. You should always ask for a culture cuz you can be wasting time taking the wrong med and a culture will tell them which is best. Cranberry juice stops the ecoli which is the usually culprit from attaching itself to your urinary tract thus stoping the progression of an infection. My daughter had alot of UTI's first one at 2 and was diagnosed with reflux grade 3. She outgrew it but you learn alot. No tub baths, cranberry juice with a snack before bed are 2 good habits. Cranberry juice can give you an acid stomach so eat something with it. Kim

Macrobid is about the only antibiotic that doesn't make me sick. I get reacurant bouts of UTI and the sulfa drugs make me really sick and I get dehydreated. Kim]

when I saw Dr. Grubb last I asked him about my blood sugar, it is very low in am, around 58. He told me that if you test on your fingers us POTS patients will not get an accurate reading. I don't remember the reason why but I think you have to test somewhere else. It had something to do with when BP drops extremities don't have right blood volume?????? I asked so many questions and he gave so many very long answers I should have brought a tape recorder cuz I can't remember half of what he said. My brain isn't what it used to be. Kim

I lost a little over 20 lbs in the first few months of being sick. So far it has stayed off. Sometimes I just don't feel like eating? Then I get dizzy cuz I am hungy and I eat. I go throgh periods where I snack all day and am always hungry then back to picking. I get a nausous feeling when I feel dizzy and thats mostly the reason I think I pick instead of eat. I get the bloaating feeling on what I consider a small meal, my pants even feel tight. I went through all kinds of testing by a gastro and they couldn't find anything wrong. I get alot of what feels like air in my stomach and chest pain then relief from a burp. Then it's on again. Since I got sick I have become very lactose intolerant, even small amounts can give me really bad stomach pain and you know what else! I have to watch even the ingredients in store bought bread cuz alot of brands have it in. When I was on florinef the bloating was worse especially the week before my period. Kim

Dr. Grubb started me on a tinie tiny dose of Celexa on Feb 15th, 5mg, and it's the first one I've ever tried that hasn't given me insomnia or other wierd feelings. My question is this, how long did you take an antidepressent before you started to notice you were feeling better. And how do you know when the dose needs to be uped and when? I have noticed I have a very dry throat since starting it, and am extra thirsty if that's possible, I'm already floating. I do have a couple things that are happening that feel different, but I am not sure if it's not just me being scared cuz it's a new med or not. My anxiety feels a little worse at times and I feel jittery? Will this go away with time? Please tell me it will! That's the main reason I need this med. One thing I have noticed since he took me off my beta blocker and florinef is that my BP isn't spiking up. He said it also does something to help reset the system that controls my BP. Anyone know of a paper that explains how this type of drug does this? Kim

This was a great site that I used to find a list. People will e-mail you back with some good information. http://flash.lymenet.org/ubb/ultimatebb.php Kim

Edit done, sorry I'm new to all this . Thanks, Kim

I found a LLMD that is supposed to be on my insurance, his office is double checking and I should know by Monday. He was recommended by a few who answered my posts on lymenet.org for a Dr. in or near Ohio. I was surprized that there were not that many? It would be a relief to find a cause for all my wierd symptoms even though I really don't want to have lyme, but it would at least something that could be treated and maybe give me some relief. I never even thought of lyme till I saw that alot of my symptoms were similar and that fall when I got sick I did find a big fat ugly tick on the dustruffle of my bed that had filled up on somebody. The dog could have brought it in? We have family who live on a farm, and before they got chickens last year, ticks were everywhere! It's possible I got bit and didn't even know it? Kim

Tammy when you say the first few weeks can be unbearable, what do you mean, what was unbearable? I'm on day 6 of celexa, only started out at 5mg, I seem to be doing ok, but I am having really bad aches and pains in my hands and shoulders and wondered if this could be part of getting used to it? This is the first one i have tried that I haven't had insane insomnia and so far I am hopefull. How long was it before you started to feel somewhat better? [ Kim

Amy,, It's just a crazy thought but do you remember story a couple yrs back about the doctor who was stationed on a base in the Antartic and had breast cancer and couldnt get out because of weather for testing and she visited another doctor over video/computer conferencing. Records can be faxed. Maybe your doctor and Dr. Grubb's office can work together without you having to go there? Dr. Grubbs Nurse Practitioner is Beverly Karabin R.N. (419-383-3963) maybe your physician can call her and arrange for a phone consultation at least to educate himself on proper treatment, maybe even enclude you somehow, kinda like a virtual visit? It couldn't hurt to ask. Maybe the Doc at the Cleveland Clinic would do the same? Kim

One of the symptoms of LYME DISEASE "Neurally mediated hypotension (NMH) is not uncommon. Symptoms can include palpitations, lightheadedness and shakiness especially after exertion and prolonged standing, heat intolerance, dizziness, fainting (or near fainting), and an unavoidable need to sit or lie down. It is often confused with hypoglycemia, which it mimics. NMH can result from autonomic neuropathy and endocrine dyscrasias. If NMH is present, treatment can dramatically lessen fatigue, palpitations and wooziness, and increase stamina. NMH is diagnosed by tilt table testing. This test should be done by a cardiologist and include Isuprel challenge. This will demonstrate not only if NMH is present, but also the relative contributions of hypovolemia and sympathetic dysfunction. Immediate supportive therapy is based on blood volume expansion (increased sodium and fluid intake and possibly Florinef plus potassium). If not sufficient, beta blockade may be added based on response to the Isuprel challenge. The long term solution involves restoring proper hormone levels and treating the Lyme to address this and the autonomic dysfunction" There are other symptoms to that are similar to ones I have and have heard others have. How many of you have had LYME? It's got me wondering if I should ask to be tested, I spend an awful amount of time in the parks when the weather is nice, and camping to. Has got me wondering? Kim

Hi, Just wanted to share something Dr. Grubb told me Tuesday, We POTS patients are very overly sensitive to medications, he likes to start off patients with very tiny doses and work them up to regular doses. I just started celexa and he's got me of 5 mg to start. When I tried Zoloft I felt that crawl out of my skin feeling, but I had it at night, all night in fact, insomnia at its worst. To big of a dose for me. But he says thats a good sign that the med is working. If you have any side effects talk to your Doctor, and maybe he'll sugest you start at a smaller dose. I do understand about UTI's There horrible. I hope your feeling better soon. Kim ]

Belinda, Thanks, Mine was so bad the last couple days I started into my excessive worry mode. Saw the news about the menningitis case at a school and I even had myself thinking I might have it. It wouldn't be so bad having a few symptoms to deal with, it's just the overwhelming amount of wierd symptoms that come and go and evolve into even stranger ones. Sometimes I just get overwhelmed and freak out. It's like some alien has taken over my body and I want it back! Since I got sick my problem has been my BP was low and then it would drop now I'm having some wierd things happen like my BP is low and then shoots up. Sometimes the reading on my BP monitor scares me. I get worried all these BP fluctuations will wear my heart out, if the fast heart rate doesn't do it first. I really am trying to keep a positive outlook but sometimes even that is like hard work and wears me out. Thanks for being there and I hope your glue feeling is gone. Take Care Kim Joanie, I've had 2 MRI's over the last year and a CAT scan, would that have shown up if it was there? Thanks, Kim

I had heard neck pain is a symptom. I have had neck pain since first being sick Dec of 04, It hurts mostly where my neck meets my head in the back, sometimes it's very painful and knot like feeling, it's hard to explain. Sometimes it's barely there and then at times comes on with a vengence and there can be a very bad headache, sometimes reaching migraine intensity. I can't find any explaination as to why POTS or orthostatic intolerance would produce neck pain, anyone got any answers. When I wake up in the morning, my shoulders and arms ache too, and then my joints in my fingers ache really bad. This mostly goes away after I get up. What causes the aches? Kim

Jacquie, Hi, I hope it's true and you and I and everyone else in 5 years will all be better! I have been experiementing with different concoctions. I have been putting 1/8 tsp bio salt in bottled water. It is not as harsh as plain table salt and after awhile its not so bad as long as its cold from the fridge. I gained 5 lbs in a few weeks after starting to drink 8 gateraids a day. then it dawned on me to check the calories, it came to over 800 extra a day!!!! If I kept that up I'd get huge! Sometimes I'll take a gateraide and split it up to add taste to the other 8 bottles of reg water for a change. We were talking about getting a water filter on our sink so that we could fill our own bottles. There kinda expensive up front but over time it would pay off, we go through alot of bottled water, even my kids are big water drinkers, not into pop and stuff. I haven't heard that it may come back, that would be depressing . Take Care, Kim

Kristen, I had all my testing done by Dr Fouad, she told me at the beginning that she is so involved in testing that she does not normaly see patients long term. She said she'd see me though. I did not tell her I wanted to see Dr. Grubb, I just sent her office an e-mail asking for a referral, and I mailed a signed medical release form to Cleveland Clinic's Medical Records Dept. Dr. Fouad did treat me and I had follow-up appointments every couple months after testing. She did prescribe meds for me, she took me off atenolol and changed to Metoproplol (spelling?) she advised compression stockings and I tried florinef. She also reccommended weight resistence to build muscle mass in legs. Dr. Grubb did tell me that I had my testing done by the best in her field, he said she is very through in her testing and he would never question her findings, she's that good. You just need to find someone to follow up after testing for long term treatment. I hope that helps. Kim

Mary, I really don't know anything about it either but I will keep you in my prayers, I am sorry you are having hard times. I do hope they can figure this out for you and quickly. Take Care Kim

Hi Diana, He told me the good news is that a good percentage of patients who's POTS were triggered by a virus do recover and they seem to do so in the 3-5 yr range. That did give me hope, I have 1 year 2 months in. You know he never used the term "adrenergic POTS" that I remember? I'll have to ask him at my next follow-up or maybe I'll ask his nurse when I call to check in about my med in a week. I did ask him if I had "Hyeraderenergic type POTS" and he said they would have told me this from my testing at the cleveland Clinic. That is if they did this test? I did have most of the symptoms of this type. I am going to double check with Cleve Clinic and see if this test was done. You'll be impressed by his genuine concern and how patient he is. Hope you can get in soon. I'd check every bit for cancellations, that's how I got in so soon. Someone cancelled right before I called. Take Care Kim [ WI mom, I had tilt test, blood volume/hemodynamic tests, isuprel C-V reactivity tests, 48 hr heart monitor test, heart stress test, heart ultrasounds, MRI of brain and neck, done in 2005 at the Cleveland Clinic by Dr. Fouad in Hemodynamic and Neuroregulation Lab/Syncope Clinic. Kim