Jenn202

In a way I looked at losing some of my friends as a blessing in disguise. Some of these people I was so close to since I was a child..... They stopped responding to my calls... And I even had one go as far as telling me ( 2 weeks before my wedding no less) That she thinks I have been useing being sick all these years as an excuse for not living and afraid to live.... I told her where to go in more than 10 ways....then cut her off forever. I do have a few friends left over from That time period in my life, but they only like to talk about themselves. I just recently saw one of them, she just had a baby, we hadnt seen each other for 4 years... But she never asked one time how I was doing..... I have been lucky to replace some of these people with others who really do care. I guess the lesson here is maybe my old friends were always this self centered and I just didnt realize it. Anyway... I think you only go through life with 1 maybe 2 if you are lucky TRUE genuine friends...... The rest who dont/wont/or cant respond to you reaching out I say are not worth it.

I have taken a low dose of xanax for years..... It helps just about every single neuro problem I have...if I could only be 50% functional for a day, I cam be almost 100% if I take it... For me it is something that alows me to live a fuller life.... And I am just happy I have found something that helps as much as this has.

Also remember that it is most likely not even YOU or your illness that is the big problem. The problem seems to lie within him and probably even if he was with the healthiest woman on the planet then he would just have doubts about something else..... Take care of yourself...the guy who is "ready' will come along!

I think if the guy you are with is not willing to educate himsself or understand what you are going through then he is not the right guy. SOmeone should love you for everything you are...good and bad.. There ARE guys like this out there so don't give up! I started dating my husband right before I became very ill..... So He has seen me at my very worst.... Bedridden etc..... He never left my side the whole time and was one of the people in my life who helped me get a diagnoses. I think b/c he grew up with a Chronically sick mom it helped him understand Chronic illness...... and the ups and downs of it. Hang in there.... You will meet a guy one day that sees you for you...and until then take care of yourself and do what makes you the happiest.....That is the most important thing.

Because of all my sensitivites and being on antibiotics, I have eaten a No Sugar/yeast free diet for years.... Its a little costly, but When I eat this way I can eat almost whatever I want. Just in this last year with all the stress, I went back to my "old ways" and started eating badly... More processed foods, dailry etc... I definetly see how its easier to put on weight with these types of foods.....Although I am still thin, I have out on weight.. My average used to be 100-105 lbs and I was 5'5...but like all of you I noticed that as I increased the salt, and everytime I get the lyme back under control, My weight goes up...I am up to 110 now. I also notice the water retention thing. I will go through a week of being so bloated with water.. my clothes get tighter, and I feel so miserable..and nothing I avoid eating takes it away... Then I'll have a day where I will pee alot and it all goes away. Can anyone relate?? I;m wondering if its the endocrine system just all messed up.

I had posted this on another topic, but wanted to add aagin that I bought a Total Gym.... Which is similar to plates moves b/c you are usuing your own body resistence... So far I love it b/c most of the exsercises ar e done lying falt on the board or sitting..... My BP is much more stable..I do not get set back from it like when I tried regular weights, and I have more stamina to keep going b.c my body is not always overcompensating from the standing , lay9hg , sitting etc... Walmart , and even BJ's wholesalse seels them for not too bad a price.

HI - I also forgot to add that emergen C Makes "Emergen C Lite" No sugar and no calories...Thats the one I drink since the rest have fructose in it for sweeteners.

Hi Miriam - some good electrolite drink without sugar are Ceralyte which you can order at Ceralyte.com... I get the unflavored kind and add a pinch of unsweetened cool aid for flavor. Also Electromix and Emergen C by Alacer is great...You can get those in lost health food stores. I usually only drink electrolite drinks b/c plain water flushes me out. Feel better

I'm not sure if any of you have tried the Total gym? I just bought one b/c I usually do free weights, which I find is difficult b/c I have to be standing up. With this you can lay completely flat and go at your own pace and weight...or use no weight on bad days and just use it for stretching... You never have to stand up which I think might help keep BP more stable. I'll let you know how it goes as I use it. I know that going very slow with any excersise and limiting it to when you are up to it is always key for me. Good Luck Just a thought.

Hi Khrios - If you have Lyme Disease and babesia they will wreck havok on you,,,,they hit every single part of your body, especially anything to do with your nervous system. you can feel like death. Have you been able to get on treatment? If you would like to email me , please feel free to

Hi Khrios - Lyme and babesia is nothing to fool around with.... Email me if you would like, also try going to www.Lymenet.org They have a good bulletin board ..lots of info...and can help you find a good LLMD...... Take Care Oh not sure if my email is posted: jljlc202@aol.com

Hi tearose - I feel so badly for you..I went rhough the whole SSD process year ago, and it was SO stressful and painful..I did win once I allealed to the administrative Law Judge.. I am not sure which step you take after that but KEEP fighting!!!! Maybe you can consult with a lawyer about your next step..you deserve benefits so please keep fighting any way you can for them. My husband is a police officer and it inferiates him the amount of people he pulls over on SSD who are perfectly fine like drug addicts....... As far as feeling like you dont know what will come to you that you will be well enough to do, I believe God DOES have a plan for you. Maybe you could look into online education? Its a thought. But believe me it will all work out in the end. You might find yourself in a whole new profession years from now b/c of your experiences. Hang in there

hi Guys - I just wanted to let you know I had my Appointment today with my ANS Dr..... He is going to get the ball rolling with insurance to see if I can get on Procrit!! I am really happy. He said I would most likely be denied the first time , but then we keep fighting it. He agreed we have done enough trials of other drugs that were unsucsessful for me to be a canadate... I am keeping me fingers crossed. Again a BIG THANK YOU to everyone who welcomes me here and gave me information...

Thank You so Much Nina And Steph - I am greatful for your thoughts and help.... I feel better going into my appt tomorrow...I feel Like maybe I have some new things I can try to at least alieviate this without always having to resort to IV Fluids And Nina... At least now if I HAVE to have this test for insurance reasons , you have put a lot of my fears to rest, and I can now consider it... I know you both have a lot of your own things going on...so I truly appreciate you taking time out to help me.

Steph - Thank you so much fro explaining the Procrit... My ANS Dr has mentioned it but like you said he told me insurance is really hard to convince. How did you get your indurance to pick it up? Would you mind explaining a bit about what happened the first time you used it and had a bad experience? And also how you were able to tolerate it now? I am VERY sensitive to meds..... SO I have to start so slowly. I actually have an Appt to see Dr Grubb in April... I wanted a second opinion, ans I think it will help my ANS Dr here as well. I think I am going to print this page out to bring with me tomorrow if I have your permission.... if not I understand. Thanks Again!!!

Hi Briarose - Could you explain about the epigen injections a little? How do they correct Hypovolemia? Have you seen a difference while on them? This is one I have never heard of...so thanks for bringing it to my attention! Nina - Yes I do know that when I was in the hospital back in Sept, my ANS Dr said it was a low risk, but he could not be 100% sure nothing would happen...and I know they consulted with oncology about the dye, but I think at the time I was feeling so ill I just didnt want to even chance yet another complication.... I might consider it at some point though. Although we have pretty much estavlished that I do have hypovolemia from my tilt test. I have mild POTS symptoms, and a small amount of nerve damage that he feels can be regenerated in time... The Main problem was the Lyme Disease.... But It might help insurance wise one day if I do get the test done. Can you tell me how it was for you? What was the procedure like? Is it invasive? Thanks to all who have taken the time to respond to my post. I have learned quite a bit in just the last couple days....I am excited to bring some of this up to my dr tomorrow .... Thanks again!!

Hi Martha - My ANS Dr mentioned Procrit...I would really like totry it but he explaines that if you are not anemic it can be tricky to get the insurance companies to go for it..I guess the treatments are 30,000 a year.... I;m going to ask about this again Thurs when I see my Dr..... If you dont mind me asking, where in the US do you live? Lyme tests can be very inaccurate.,,, most only detect if you body is making antibodis to the disease....but if you have had Lyme for a long time then your body can actually stop making antibodies and the Lyme isn't a forieng body anymore... Theres also the sensitivity of tests....what type you have, what Labs you use for the results. I think the best way to diagnose lyme is by symptoms and response to abx.... Good Luck to you....I am glad you have found some stuff to help your hypovolemia.

Hi RQT - I also have what is identical to "hypovolemic shock"....I start to shake uncontrollably, My skin turns a yellowish color ( not eyes).... My eyes get these dark drawn circles that literally go down my cheeks, and I start to almost lose consciousness in a sense...I cant even pick my head up without feeling like I could black out. All this is usually remedied with IV saline for a day or 2......although since I have founf a good ANS Dr and also treated the Lyme, my episodes are much less severe and occure much less. Also Blood drawings used to be a nightmare of great proportions for me..it used to set me back weeks with just one tube. I am on DDAVP which has also helped keep volume in me....and the salt and other stuff I talked about. I will bring up the sodium test to my Dr....I see him on Thurs. IS this like the water deprivation test? I had one of those in the hospital back in Sept. Thank You so much for your advise

Thank you for all your responses. I will do a search on hypovolemia...I am so interested in if people have it to the degree I have it..... I was diagnosed with it in Boston Medical through a tilt test....they did the tilt first..then pushed a liter of IV fluid in me and redid the test... My blood flow and heart rate/BP went back to normal after the fluid. there also a controversial test for it where I guess you are injected with some radioactive Dye, and it measures your Blood Volume, but I opted not to have it b/c they are still unsure of side effects from the dye down the line. Radha - Yes I am so sensitive to abx, ad I do have pretty intense herxes if I do not pace myself and go slow. Thank God my Lyme Dr is very sensitive about this and we go at a slow pace.....So Its a catch 22..abx are so dehydrating...not good for hypovolemia, but treating the lyme is what is helping my ANS symptoms.....and the Lyme is the cause if the problem.....so I am left knwoing I have to do it. I get home IV Fluids if I get too sick.......I also take salt tabs...electrolite drinks, and I do lots of squates for my legs.... I take TONS of acidohillus to replenish the bacteria in my gut....try to watch diet..... but Its really impossible to aviod herxes sometimes. Thanks again for sharing your info !

Hi Everyone - I just wanted to introduce myself...I usually Post on the NDRF forum, and recognize many names from there. I am 33 year old female.... I have had Chronic Lyme Disease for 12 years now...Treatement of Lyme significantly improved me up until last year when I went off all antibiotics.... I then developed POTS and Hypovolemia..... I am currently Back on Antibiotics which put me in remission from the POTS( needles to say I will never go off again) ...but after a bout with a virus this winter, some sx have been retriggered. I am wondering how many people on ths forum are dealing with Hypovolemia? Its my biggest problem.... Sorry for such a lengthy post!