Jenn202 Posted April 14, 2005 Report Share Posted April 14, 2005 Hi everyone - I just wanted to THANK ANYONE who insisted I keep my Grubb appt.....it was hands down the best appt I ever had with a Dr!!He was absolutely wonderful..... He basically solved every problem I was having and explained in detail why it was happening ( computer diagrams and all).....He diagnosed me with hypermobility as well. My arms actually come out of joint they can bend back so far... I just thought I was flexable!Anyway, He said b/c my POTS is caused by the Lyme he thinks I have a very good chance of recovering or improving significantly... 80/20 percent...His goal is to stabilize me so that I can continue on a high enough dosage of meds for my Lyme disease..... He said that most of his patients with Lyme do very well once they tolerate treatment for it.....He is trying me on Mestinon...... He said I need to just do a trial and error of the list of meds he has... But he has high hopes that I will tolerate this drug ok...we'll see....Anyway, my husband and I are both so happy to have answers, and to at least understand what is happening to my body.Better news is that there is no need to go to Mayo.... He said that I have all the testing required ...it would be up to me if I wanted more for myself or insurance, but he said dr Low would have disgnosedme the same and have me on the same medication......I just thought I would let everyone know and again thank everyone who provided me with info to dr Grubb! Quote Link to comment Share on other sites More sharing options...
EarthMother Posted April 14, 2005 Report Share Posted April 14, 2005 It warms my heart to hear good news!Thank you so much for sharing!EM Quote Link to comment Share on other sites More sharing options...
Ernie Posted April 14, 2005 Report Share Posted April 14, 2005 Hi,I am very happy for you that you had such a nice visit. He is such a nice and competent doctor.Ernie Quote Link to comment Share on other sites More sharing options...
corina Posted April 14, 2005 Report Share Posted April 14, 2005 Hi Jenn,congratulations on this appointment and on the good news you got!I'm on Mestinon as well, and I had very much trouble at first, because of my stomach. My familydoc prescribed me a stomach med and later a different one and I builded up the mestinon. I began on tablets of 10 mg 3 times a day and ended on 7 tablets of 60 mg per day. Because I couldn't tolerate that much I went back to 4 tablets of 60 mg a day.When my body started to get used to this dosage I builded up again with the 10mg tablets so that now I'm on 5 tablets of 60 mg per day. It helps me with dizzyness, so that I can drive my electric cart and nausea and temperature as well.I hope giving you this information helps you, because there were times that I wanted to stop the mestinon because it gave me so much trouble like bad speaking (even worse than I sometimes already do), trouble seeing, very much stomach ache and muscle movements. Lowering the dosage almost solved these problems. I wish you good luck on trying the mestinon (I wouldn't want to do without it anymore)Corina Quote Link to comment Share on other sites More sharing options...
Jenn202 Posted April 14, 2005 Author Report Share Posted April 14, 2005 Thank you Ernie and Earthmother!Corina - Dr Grubb wanted to start me on 1/2 60 mg tablet 2 times a day and work up to 1 whole 2 times a day... But I have severe med sensitivity.I just read about mestinon and side effects and am a little worried about trying it.... But I guess I have to so I can see whether it will work or not before I move on to the next trial drug.. Thank You for sharing your experience and I am SO HAPPY you are able to function better on it!! Quote Link to comment Share on other sites More sharing options...
calypso Posted April 14, 2005 Report Share Posted April 14, 2005 Jenn,That's great news. Glad he could help you out. 80-20 odds are very good!Amy Quote Link to comment Share on other sites More sharing options...
wareagle Posted April 14, 2005 Report Share Posted April 14, 2005 Hi Jenn..I'm so happy for you! It helps a lot to know what's going on..and even better to know that the odds for improvement are in your favor! Keep us posted on your progress! Quote Link to comment Share on other sites More sharing options...
geneva Posted April 14, 2005 Report Share Posted April 14, 2005 Jenn, what encouraging news. I am SO happy for you! Good luck with the trial and error phase with meds. I hope you find a good match quickly. Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted April 14, 2005 Report Share Posted April 14, 2005 Hi that is great about your appt, and treatmentgood luck to you!Linda Quote Link to comment Share on other sites More sharing options...
Roselover Posted April 14, 2005 Report Share Posted April 14, 2005 Hi Jenn,I have tried Mestinon and I would encourage you not to be afraid to try it. Just be sure to take it with food in your stomach and like Cornia said, start slowly and work up.Good luck and thanks for sharing your experience!!!Roselover Quote Link to comment Share on other sites More sharing options...
lindaf Posted April 15, 2005 Report Share Posted April 15, 2005 Dear Jenn, so glad to hear you had such a good visit and helpful one with Dr. Grubb. Sounds like there is light at the end of the tunnel. Good luck with your new meds! Linda Quote Link to comment Share on other sites More sharing options...
Jenn202 Posted April 15, 2005 Author Report Share Posted April 15, 2005 Thank you so much everyone.....I am nervous about starting mestinon..... I hope if I do get side effects they wont be bad ones... But I am at least hopeful after Grubb that I have choices.....Also its so comforting to truly understand what is happening to you when you feel a certain way... I think a lot of the anxiety with being ill is not knowing what is going on.... He really helped me paint a picture of it.....Have a good Night Quote Link to comment Share on other sites More sharing options...
steph37822 Posted April 15, 2005 Report Share Posted April 15, 2005 oops Quote Link to comment Share on other sites More sharing options...
corina Posted April 15, 2005 Report Share Posted April 15, 2005 Jenn and Steph,I want to tell you that I wanted to stop the mestinon several times but I'm glad I didn't. I felt very nausea and had other bad side effects but my familydoc almost begged me to a bit longer and now it seems that my body is getting used to it. So you might need a lot of perseverance, but for me it was worth it. My latest tip for the nausea is eating carrots, don't know why, but it works. Are there 10mg tablets avalaible in the US, this could help you build up to a 60mg tablet. They're difficult to break. Well, I wish the both of you very much luck on this,CorinaPS hope you don't become orange Quote Link to comment Share on other sites More sharing options...
Jenn202 Posted April 15, 2005 Author Report Share Posted April 15, 2005 Hi Steph and Corina! Corina - about how long were you on the mestinon before you got over the side effects?Steph - Yes I have the botle sitting here as well, but am scared to take it!I just spoke to my POTS Dr here and he says its fine to take but has not recieved Dr Grubb's report yet.He also thinkis I should go to Mayo for a confirmation.... Now I am wondering if I should? I know Dr Grubb works off of mayos research.... But then again maybe another opinion would not hurt??Any thoughts??Thanks Guys! Oh BTW - Steph if you start the mestinon beofre me let me know how it is going....! Quote Link to comment Share on other sites More sharing options...
steph37822 Posted April 15, 2005 Report Share Posted April 15, 2005 oops Quote Link to comment Share on other sites More sharing options...
corina Posted April 15, 2005 Report Share Posted April 15, 2005 Jenn (and Steph)it took me some time to build up and I builded up too quickly so I immediately was in trouble. I then lowered the dose and felt a little better. I think it took about th6 to 8 weeks until I got used to it, and I thought of throwing it away several times (don't do that, it's a too dangerous med ). Slowly, slowly, take your time and ask your doctor if you can use a stomach med if you need it, that helps. POTS also makes you nausea, so you can take this as well. I was expecting very much of it and that worked against me. But what was very important to me is that my temperature is better (I was cold like dead) and that I'm less dizzy so that I can drive my electrical cart. Good luck, and please give it a try, it might improve your quality of life (not immediately though, be aware of that). If you want more info, just ask me and I'll try to help you outCorina Quote Link to comment Share on other sites More sharing options...
Jenn202 Posted April 15, 2005 Author Report Share Posted April 15, 2005 LOL! HI Steph - Ok I wont make you a guinue pig! I was just too chicken to take it!Anyway, I am kind of agreeing with you on Mayo... I hate to go b.c it will be so tiring.... But Like you said its validation on what Grubb said.... and I think my POTS Dr would be happier to have that validation... hmmmm... I was hoping I could take that money and go to the Bahamas instead! Maybe next year.I am wondering though if I start Mestinon or another drug, I am sure Mayo will want me off drugs.... I wonder if I should be waiting on taking it...... SO many dilemas!Oh one question: When you were at Mayo did they refer you directly to dr Low or were you referred to another specialty first?I called Mayo last week and Dr Low's secretary said he referred my case to internal medicine first.... I am on the waiting list there.. I am wondering why Internal Medicine... Dr Grubb thinks its b.c hypermobility is an IM dignoses and he wants them to evaluate me for it ...... Quote Link to comment Share on other sites More sharing options...
steph37822 Posted April 15, 2005 Report Share Posted April 15, 2005 oops Quote Link to comment Share on other sites More sharing options...
Jenn202 Posted April 15, 2005 Author Report Share Posted April 15, 2005 Well I guess I will just HAVE to postpone mestinon!! LOL Steph - I think the reason Mayo missed it years ago is b/c they are just comming out with this research now.... At least that is what Dr Grubb said. There is a paper that will be published this year and made available to all dr'a about the connection between Hypermobility and Autonomic dysfunction like symptoms....Dr Grubb is proof reading it now.....I also bet that is why Dr Grubb is putting you on Mestinon..it is the drug of choice for people with this problem.....Well maybe I wil get away with not having to start it... Although I really want to start feeling better, So I guess trials of different drugs are the only way we can find something that will work....Keep me posted on Mestinon... Let me know if you get "brave" and take it Quote Link to comment Share on other sites More sharing options...
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