Jenn202

Ernie - I am wondering if it could be an additive in the make up of the pill that you reasted to? My ans Dr and Dr Grubb told me that when we react to meds so strongly many times its b/c we are reacting to the make up of the pill. Just a thought. I hope you are feeling better .

Yes this was my second trip to Mayo. although I cannot publicly post who I saw there. Dissapointing to say the least. I am SO happy you are seeing Grubb!!! Great great choice....!!! Goldenstance _ I have never tried the V 8 juice in the morning... Not a bad idea. I usually drink a glass of electrolite water with a salt tab when I wake up before I get out of bed.

Roselover - When in January is your Appt? I have my follow up sometime in the beginning of Jan... Cant remember the date off hand.... How funny if we have one together!

I agree WHO can we beleive????? I think we all make more sense than any of the so called specialists with our experiences. I was put on DDAVP for about a year 1/2. At first it worked wonders for me , but as time went on it stopped working and actually made my electrolites more of a problem.. So I stopped it about 4 months ago. I am the same in that I usually pee the most at night, but will put out normal urine during the day. Thats a great theory about our bodies trying to retain fluids while we are upright! It definetly seems the minute I fall asleep is when the faucet starts! Although I do have days where I will go frequently all day. I also have issues with fluid retained in my tissues on and off. One thing I know for certain is that I have more knowledge of myself than any Dr could ever give me, and I am thankful for the handful of Dr's who have cared and helped me through the years... I guess we just have to "throw out" the useless ones.

Thank you Emily for your support! I think we all need to give our kidneys a good talking too!! LOL Anyway, I can put some closure on Mayo..its over and done with and I have some good Dr's so I dont need their opinions to make me feel complete... I hope you are enjoying your summer and have been able to get out and about a bit!!

I definetly deserve a big fat "0" in the creativity dept. Jenn is my nickname for Jennifer and 202 Is my road number. I use this name for most of my online things so that I will not forget...especially passwords. Yes I think I have become officially braindead lately! LOL

I agree with Ann..your BP does not have to fluctuate on the tilt to have a problem. My personal opinion is that we wax and wane so much in our severity of symptoms that the the tests can not always confirm our problems.... I also feel that the tilt test is in a much more controlled environment than we are in daily living and activities. Oo the tilt you go from laying flat on a bed to being slowly tilted up with a bed supporting your body... In my opinion that does not mimic the day to day activities of standing to sitting to laying to bending etc..... And all the pressure we put on out tendons and body in different ways all day, The tilt just cannot mimic that. I dont know where you live but hoprfuly you can do some research and fins a new Dr.... Good Luck and I hope you feel better quickly

I truly feel Dr Grubb would be well worth your visit here, his knowledge is like no other in my opinion.... I think I would of travelled out of the country to see him if he was not in the US.

Hi Ernie - Dr Grubb is wonderful, and you can feel good knowing he will have your best interest in mind when he sees you. I wish you the best of luck...Have a safe trip!

Thank You Steph, Ernie, Melissa, and Nina for your support. I do appreciate it. I was working with a patient advocate from my first experience, but he did not really do much. I would LOVE to get reimbursed for the 2 trips out there though...just dont know hwo to go about doing that. The trips really put a strain on us finacially as well as emotionally with all the worrying and hope of getting help that never happened. Anyway, I am glad I have good Dr's in my Corner, especially Dr Grubb. I am SO thankful I saw hiim before this ordeal... Seeing Dr Grubb gave me the strength to deal with this mess. I also have a supportive Lyme Dr that understands ANS, as well as a good ANS Dr near me so I will move forward. Steph I think your right about the research thing. I did not fit the perfect profile...I had a messy scenario with my Lyme Disease and everythign else and they did not want to get involved. I feel I have dome all the testing, seeking out I need, and Will no longer go searching... I feel satisfyed now that I have the info I need to make good health choices. If nothing else the bad experience at Mayo sealed the deal that I DID Have all the best testing and advise already. Guess if I had not gone I would still question myself and think "what if" Anyway, have a good night guys and thanks again

Hi Guys - I havent posted here in a while. Been back to Mayo, along with enjoying the summer, and my newest problem , fighting a bad virus that my husband and I caught...... but I have been reading posts on and off when I had the time. Anyway, I was hesitant to post about Mayo again, but after reading the post about Thirst and hydration I needed to vent. I saw a Dr. this last visit... I think some of you know that I had been seen by Dr Grubb who diagnosed me with the hypermobility, explained my thirst and hydration issues and how they were connected etc...he was wonderful. I went to Mayo for a confirmation of these things... Big Mistake. We flew all the way out there for a doctor to give me a total of 25 ( MAX) minutes of his time. He told me that I had POTS but that he couldnt do anything for me, he basically acted like I was wasting his time and there were REAL sick people that needed to be there. And that I was just drinking too much liquid in a day and needed to Urinate less in my day..... I told him I have run the gamit of not drinking to severaly limiting fluid, to drinking what I needed, to increasing/decreasing salt intake... but it didnt matter my body could never keep its balance... He just kept repeating " you need to put out less urine in the day and drink less" No matter WHAT I said that is all he would respond. My husband finally got REALLY mad and said " SHE JUST TOLD YOU MANY TIMES SHE DOES DO THAT" His response " you need to drink less water and put out less urine" I told him Dr Grubb has Diagnosed me with hypermobility. And he said no you dont have that, and I'm not intersted in that theory. Never even tested me or anything, My husband then grabbed my thumb and pulled it way back...he never said a thing. He then handed me my records without saying a word and got up to leave, I said to him " I am so Sorry we have travelled all this way, took time off from work, and spent money to waste YOUR precious time" He gave me this "robotic" type look but said nothing and left the room. In the last 10 years I have seen about close to 40 specialists or more. I put this doctor in the top 3 of the worst I have ever encountered. It was a pathetic waste of my time, and I would love to punch him as hard as I could for his attitude. Now I just recieved my write up in the mail ( I called patient advocate and told them that they were not to send any records anywhere but to my home) In His write up he says that on my tilt it showed POTS, and I was dehydrated, Then he also says that I have hypermobile joints... funny since the only way he would know this is b/c my husband bent my finger way back. Then he says that I need to limit my urine output to no more than 3 liters a day ( OK KIDNEYS CAN YOU HERE ME NO MORE URINE OUTPUT!!!!) SO he says I am dehydrated in one sentence, have POTS, but that I drink too much and that I need to stop that, and put out less urine in another sentence. and that this is NOT his area of expertise... That people with dysautonomia do not have these fluid issues!!!!!!!!!!!!!!!!!!!!!!!!!!!!! The comclusion was that my Lyme disease had Caused problems with my nervous system. Which leads to why I am now posting about this experoence... I guess many of you DO have this problem from the responses I just read. Sorry guys.. I know there are those of you who have gotten help from mayo.... I dont mean to step on toes which is a big part of why I have not posted in a while... But I also needed to let it out somehow.... I am moving on emotionally, and focusing on my Lyme treatment for now... I cannot start the mestinon or anything else while I am playing around with abx disages b/c I wont be able to tell what is what. FOr now I am doing compression, fluids and salt. An of course I have to tell those Darn kidneys to just stop peeing so much! Anyway, I truly hope I did not offend those who like mayo... this was my personal experience with the clinic in general. I hope that everyone is having a decent summer. The heat in CT has been unbearable. We actually returned from vacation early this week b/c of the heat, and us not feeling well. anyway if its as hot where you are I hope that you are finding relief in the AC and keeping well hydrated. Take Care.

I just wanted to clarify that the salt tabs made by Consolidated Midland Corp are 1 gram salt tabs..... the Thermo tabs are much less sodium.. I believe only 285mg if I am not mistaken.....

www.americanrx.com sells them....they are made by Consolidated Midland Corperation...sodium chloride tablets. Most CVS type pharmacies can order these as well. Just have the pharmasist look up the manufactuer.

Hi Poohbear - I'm soryr you are having a rough time with Fatigue. I think all the suggestions on here are good ones. I have to agree that activity can actually turn it around.... if I am in a flare I work out on my Total Gym...or go uut for a bit and run some errands... anything to be acitve and upright.... it helps me much more than lying in bed would..... Of course you have to balance it...sleep when you need it, but make sure to get up and around for a period of time. I guess that would be all the advise I could give you. I hope you feel better !

Dr Grubb prescribed it to me in April, but I havent had the guts to try it yet,,,, I'm waiting until I go back to Mayo this week and see Dr Low...then I will give it a shot. Dr Grubb has great hopes it will help me to even things out. We shall see

I'm so sorry you are having a rough time of it. I know how it can be....you feel great for a while then all of a sudden..... I have been prescrpbed Mestinon but have not yet started it so I cannot give you any advise there. I know Corina has been on it for some time and there is a girl I speak to ( not from the forum) that takes it... From what I understand it takes some time to get used to the drug and see the effect...so dont give up hope! The fact that you had those good days is a great sign...try and remember that you DID have those good days, and you will have them again. Its so hard when we are in a hole to see any light. But know that you will pull out of this one eventually and while you are down everyone here understands where you are and how it feels. I hope you have a good night and get some rest

Hi Katherine - I was wondering if you are still on your Lyme treatment? When killing the Lyme bacteria with Antibiotics most people experience a herxhiemer reaction which is an intensification of many symptoms as well as "old" ones... It can cause anything and everything and make you quite ill. Although you feel sick it actually is a good signt that you are getting to the disease. I am not a Dr, but just from experience it sounds very much like an intesitity due to this...I have been there and know what you are saying. and of course any type of POTS will act up tremendously while this occures... Hope this helps

I'm a huge cereal fan! I love it with Rice Milk.... I also eat at least 2 peices of fruit a day.... salads...... I avoid as much processed stuff as possible and no sugar...everytime I cheat I have to pay for it. I also avoid dairy as much as possible..... I eat mostly chicken and turkey for meats, but I am also not a big fan of meat and have never digested them well.

Congratulations Jessica! I'm so glad everything went well and you have a beautiful new addition!!

I have: Lyme Dr Neurologist ( specializes in Dysautonomia) A suedo Internist An OB/GYN Urologist Dermatologist And of course the expertise of Dr Grubb.

Hi Carmen - My husband and I have been together for 11 years ( married almost 3).. He has been with me since the beginning of my illness and has seen the ins and outs. Its definetly a struggle sometimes to maintain a "normal" relationship when I am in a cycle of not feeling well. When I am not in an episode we make the best of those times and do whatever we can... travel, go out to a nice dinner, have family, friends, spend the day together doing something fun, etc etc... When I am in a flare we do things like rent movies, get take out, lower key things. I am lucky to have myhusband. He has been my rock all these years and still is. He is a wonderful person, and I also think that growing up around a mother who was chronically ill gave him tremendous understanding. He gets it when one day I feel great and the next not up to doing much. We are actually spending our 3rd anniversary at Mayo Clinic ( what fun!!) I was bummed about it, but we will make the best of it. I guess the advise I could give you is that you both have to be open , talk about the things that bother you as well as the things that you enjoy... Set realistic goals together such as when having a good day you will both take a walk etc.... and a bad day you will rent movies.... I think what breaks any relationship down sick or not is lack of communication and lack of respect and support for each other. as long as you keep that , I think you can get through anything. Take Care

Hi emily - I know I'm a little late posting. I think it is normal and human nature to to have a sad or off day as we see another year go by and still feeling ill. I think its good to get it out whether you cry, scream, kick something whatever! Holding in your emotions is as detrimental as being ill. After you do whatever is theraputic to "get it out" Then let it go, and look at your strength, compassion, and wisdom beyond your years that you have gained. I know that had I not gone through these health challenges I would not be remotely the person I am today... I am more understanding of others, and so appreciative of life and the little things.. Your an incredible person! I am so fortunate to have been able to "meet" you here ...you have impacted myself (as well as many others here I am sure) in such a wonderful way. I enjoy your posts. your advise and just your knowledge and understanding...... Never forget that you hold such invaluable qualities..... I hope that today is a better one for you.

Hi roselover - I had an endoscopy last year. If the procedure scares you dont let it..I was terrified to have it done and it was a peice of cake! It literally took 5 minutes tops and they give yiu versed or something like that and you feel great like You had about 5 drinks.... It was nothing. I actually have to go back to have a repeat and now will go withouth that apprehension. Good Luck and I hope all goes smoothly!

We stayed at the Hilton on the campus... I think we paid $79 a night.... It was well worth it b/c we were right next to the office...its newly renovated and roon service....

I have MVP and a murmur..I was diagnosed when I was 14 years old. MVP can cause some palptiations and similar stuff that we experience... Although it is not life threatening... A pretty large percentage of the population has it.