Jenn202

Steph - You just made my night! I am so happy to hear you have your procrit back!! That is such wonderful news. Your a fighter and you have perserveerd through some really tough things..... Congrats and I hope the procrit will give you the "kick" to get you back to the things you like to do

Hi emily - I have been taking Magensium for quite few years, not for sleep, but I can offer you what I take. I see a nutritionist that does muscle testing so I get reevealuated every few months to see what dosages of what I need...it always changes. Right now I am taking Magnesium Sulphate 500mg 3 times a week..... I am taking it in part with other things to move my Lymph system and also to help hold on to sodium better,,,,, I do see differences when I take it as far as my nuero stuff goes. I believe Magnesium Sulphate is the most accessable form for the body....... I have also taken Natural Calm..... This stuf might be a great place to start. Definetly look up the site Gena Gave you. I know some health food stores have it in stock. I am sorry you are having such sleep problems Take Care!

I have done a gamit of different excersises through the years bit have found nothing better than the Total Gym...... Its great...it was originally used ( and still is) in rehab clinics... Whats so great about it is the fact that you can do basic rehabilitation excersises, or get a total weight/ aerobic workout... My husband who is a police officer and has lifted hard for years uses it and gets great benefits ...... thats how versitile it is! What I notice is the best part of it is the fact that you are layng on an incline the eintre time you are doing the excersises... I believe for me this stabilizes my BP and heart Rate... I'm a bit advocate of strength training. I have been doing it for 8 years.... even when I was bedridden with Undiagnosed Lyme I still had my free weights asnd used them in bed. I truly attribute this to never losing muscle tone and keeping strength up to recover quicker. I find I can work out much longer and get a much fuller workout on the Total Gym than any other thing I tried. Walmart sells them for around $249 I believe..... Best investment I made....... I think the key with excersise is to stop BEFORE you become tired... I push myself , but I always stop before that point you hit where you are exhausted.

I'm wondering if you have had an infectious disease work up? Night sweats and fever can be caused by dysautonomia, but also are caused by infection. I have Lyme and I used to have such drenching sweats I had to change 2 times in the middle pf the night... I also spike fevers ( low grade like your a lot)...

Thank you Lisa and Bella! I did have the pleasure of seeing her last time I went.....she seemed really nice and understanding... I am travelling from CT but it seems like it would be worth going since She will also be speaking with Grubb and it would be such a bonus to get to see him at the end of the appt! You know how it is... My first visit I didnt really know what to expect... since then I have been through and learned so much and now have lots of other questions on my condtion as well as med possibilities.... Again, Thanks for reaffirming its a good idea

I have an appt with Dr Grubb in Janiuary, but have come up with several questions and thougts since my last appt. Dr Grubb said that if I needed to come before my appt with him that I could make an appt with his Nurse practitioner and she would see me and that he would be in the hosptial and she would consult with him. I have a tentative appt with her in Oct... but am wondering if It would be a waste of money to go just for the NP? Any experiences ? I saw her initially at my April Grubb appt..she seemed very nice, but wonder how it would work just seeing her. Thank guys!!

Hockeymom - IV saline at home has been the biggest life saver and best thing I have done since dealign with all these problems. So far this year it has kept me out of the ER/hospital at least 10 times.... I use it mostly when I catch a cold or virus since this is when my hydration issues usually get the worst..... The IV helps me to stay MUCH more stable throughout and also to be able to fight off the bug better sonce My body does not have to work to try and keep my electrolites even ( which is an immposibility). Its also allowed me to understand my body better, such as how much saline it needs and how fast a drip... Since I am at home I have complete control of how much, how often and how fast it goes in. I think its a huge benefit for anyone with our problems When I saw Dr Grubb he said many of his patients were on IV saline and that it is recommended for many. Good Luck, let me know if I can answer any questions for you.

Poohbear - I really hear about about the home IV saline...thats one of the biggest things I have been lucky enough to get that keeps me out of the ER.... I dont know what part of the counrty you live in, But I go through Chartwell Home infusion... they are pretty good about arranging payment help for thigns that are not pivked up by insurance. I am fortunate right now to have full coverage, but this might change soon as my husband is changing jobs.... If not Chartwell, Maybe you could call nearest hospital and see if they know of good hom infusion companies that accept medicare..... Thats how I found mine...I was told over and over and over again that I could not get IV saline at home from all my Dr's and that insurance would never cover it... I did my own investigative work and found one within 10 minutes of looking... Good Luck to you, I hope you can find a company to help pick up the remaining balance......

Thank you to both Michelle and Emily for helping to keep this site going another year! I wish I could help, but finacially we are very tight with medical bills and my husband in the process of changing jobs... I hope next year I can do more. This is a wonderful site. Nothing else like it exsists on the net, and everyone here has become an extended family in many ways...if I have not been on here in a while I look forward to seeing how everyone is doing. Again many Thanks

Hi Jessica - Yup it sure sounds like the same thing.... My mother has had severe vomiting with this... I have just been naseaus and diarreah ( yay!). Its been aweful.... I keeo thinking I' gettig better then I go back to square one.... Now my muscles are killing me again and all I want to do is sleep. I have been to the Dr and to the ER about 3 weeks ago.... they said its a bad virus and has been going around since the end of spring... I guess b/c I the strange weather patterns these bugs are living even through summer... lucky us! My IV fluids at home have helped me through it a bit... Make sure to stay well hydrated. I hope you get better very soon!

I've had the same nasty virus for about 3 weeks now.... My husband and mother have had it as well. It just wont seem to go away..... Lots of muscle aches, feverish on and off, fatigued, and head aching..... Also I have had stomache upset with it. I am not sure what it is but lots of people around here have it and it seems to be particularly nasty in the fact that it wont go away fast... I keep thinking I am Getting better than get hit with round 2 , 3 etc.... I hope it clears up fast for you and you feel better soon!

Oh I forgot to add.. I have had Lyme tests all over the scale from negative to high positive..... It depends on where my immune system is at the time... Although testing is not the most significant factor in telling whether you have Lyme.... the more soecialized and sensitive tests are better to have. Also it is important to get tested for coinfections as well.

I have posted many times about Lyme Disease,,,, My story is a long one, but basically I went 4 years undiagnosed with Lyme... B.c of this I now have all these neuro problems. You do not need a positive test to have Lyme disease. Actually the people that have had Lyme the longest have the hardest time getting a positive test b/c the body eventually stops making any antibodies to the disease. I am still on abx to this day ) been in treatment for 7 years now) without abx treatment I slip backwards.... Now the Lyme has caused damage to my automomic nervous system which is making it even harder to treat with the high enough doses of abx.... I have truly been through heck with this disease ..I was beridden for 2 years... abx have saved my life but unfortunately it has left all this damage behind... Dr Grubb is hopeful that as I continue Lyme treatment that some of my autonomic problems will clear up. I know this is not a Lyme forum. So If anyoe would like to email me I would be happy to share any info I have. All I can say is that having both Lyme and dysautonomia... I would take the dysautonomia any day over the Lyme.... I suffered beyond words before treatment..... Not that I am making Light of dysautonomia... please do not take that the wrong way. Anyway, I guess I am typing this in hopes that if some of you have Lyme disease, or have been told that you do not have "enough" positive bands for it to be positive that you will seek out a Lyme forum and a Lyme literate Dr..... Anyway please feel free to e mail me anytime

Hi stacy - I also wanted to say HAppy Anniversary! I dated my husband for 7 years before we got married...we just celebrated our 3rd anniversary. Although I was ill when we got married, I relate to every single thing you wrote just now. All those things went rhough my mind just a couple months ago on our anniversary..... My husband is my biggest fan and support, but I just wish that for a while I could be the person I really am. Being sick as held us back on many things..... But We try and muddle through and we try and rember how sick I used to be compared to now.... BUT I wish I could be better ..all the way... Anyway, for now I am so thankful to have him in my life..... I dont think I oculd have a more supportive, kind husband...... I hope you enjoyed your anniversary no matter what...... Take Care

I have my gallon of water, electrolites , a glass, and salt tabs next to me all night... I wake up at least once a night to drink a glass full with salt..... I also do this as soon as I wake up in the morning...the extra fluid helps me a lot.

Thanks Evie! I will look into it

Does anyone know of a reputable online degree program that is self paced? I have been in an online program for a year now but it is per semester, and I would like to transfer to one that is self paced so that I do not have to make definite commitments to getting work done on a deadline..... If anyone has heard of any good ones please let me know. I know there are lots out there but its hard to weed out which are reputable or not. Thanks!!

Deb - I have been there...its the worst feeling! I am so sorry you had to experience this. But do like a lot of us do..... Say "adios" to that experience and on to better ones. Its great that your PCP is in your corner. I just had a recent "Bad Dr" experience... I know its hard, but just chalk that one up, and look forward to the next Dr Visit.... Like I always say there are a plethora of bad Dr's out there and a handful of good. Eventually you will run in to the good ones who care and understand.

I havent been able to post in a while, but just logged on to read this post and must reply with my thoughts. I agree with many that have replied here... Genetic cases of Dysautonomia are very rare.... The crux of my dysautonomia came from an undiagnosed case of Lyme Disease BUT my father also has dysautonomia as well as hypermobility ( which I also have) and has had his whole life. Do I blame my father for my illness or wish I were never born? Absolutely not...... I have struggled in my life, but in those struggles I believe I have become a much stronger understanding adult... I would not for a second blame my father for his passing this on to me. And in relaity has I not been effected with undiagnosed Lyme Disease I most likely would have not had a problem with the dysautonomia. On to having children. I am truly sorry your ecperience has been a negative one... I cannot imagine how difficult it has been for you to see your daughter ill..... But that also does not mean that others with chronic illness musy deny themselves the happiness of children. Nothing is guaranteed in this life....the healthiest of parents can have the sickest child... Havig failth in whatever you believe in and using the strength from what you have gone through is what shoudl be everyones gauge for their own personal decisions... I have Lyme Disease , could I pass this on to a child? Its a possibility... BUT with proper anitbiotic treatment while pregnant, as well as avoiding breast feeding it brings my chances down to less than 10% I guess what I am trying to get at is the decision to have a child is a vert personal one that should be between the parents, there family, and God or whomever their high beliefs are. Adoption is wonderful, but again, its not for everyone either. And adoption can hold a slew of problems as well. Anyway, I do wish you well and hope you and your daughter can find peace in your life at some point.

I have been on a low doese of xanax for years now, and it works wonders for me with my nervous systme and helping me function. I know Klonopin is a longer acting xanax..so it might do wonders for you. It takes a week or so for your body to get used to it and you can feel fatigued while it is adjusting, but after that week, I felt SO much better I have not been without ir for years now. I know there was a discussion on here about antianxiety meds last year some time......

I was supposed to gp pn Vanco years ago for Lyme, but decided against it b.c I felt there were other abx options to try first. I know vanco is a strong abx, and usually a last resort abx if all else fails. Obviously your Dr knows why you need to be on it, so I would go with what he says. The best advise I can offer you is to take lots of a good brand acidphillus like Flora Source, or Natren Products... or if you cant get these any from the health food store. Make sure to keep the good bacteria in your gut. I hope everything goes well for you

Hi emily - I agree that your bumps should be looked at by a Dr. I wonder if a dermatologist would be a good place to start? Have you changed your diet lately or eaten anything out of the ordinary? Do you have any other symptoms with the rash such as fever or more fatigue etc....? It could be a reaction to your new medication as well. Years back when I was on tetracyclene for my Lyme Disease I broke out in these red bumps all over my body...... In the end it turned out to be a yeast infection on my skin. My husband also had a similar problem last year after a motorcycle accident and developed a fungal infection on his skin. I hope everything goes well at the Dr's tomorrow...! Please keep us posted.

I wish you the best of Luck tomorrow! I'll be thinking of you. At least you can enjoy those fluids!

I'm sorry that you got such bad treatment from your Dr. I agree with Patti - Give Grubb's office a call... You can see his Nurse Practioner on the days Grubb is there . Grubb told me to do this last time I w=saw him if I had an emergency and needed to see him sooner. Even though you see his practitioner, she consults with Grubb and he is involved in your care. Then I would think it would be much easier for you to get a follow up with Grubb himself. Dont give up just b/c one clueless Dr tells you he cant help you.... There are only a handful of caring Dr's out there who are willing to stick their necks out ...but if your persistent you will find them and get the help you need. I send you lots of good wishes

Do you take Acidophillus? I think acidophillus is one of the most important things a woman can take b/c it balances out and puts back all the good bacteria. Natren has a great brand of acidophillus including one you can use as a suppository. www.natren.com has all the products listed... Lots of things can trigger yeast infections, from stress, to hormonal changes, to diet, to medications.