Jenn202 Posted January 24, 2005 Report Share Posted January 24, 2005 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! Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 25, 2005 Report Share Posted January 25, 2005 Hello Jenn202 and welcome to DINET! Sorry you have the symptoms that drew you here but I think you'll find a lot of valuable information and people here!While your answers are coming in, browse around a little.To look into past hypovolemia threads, go to the upper right bar and do a search. My experience is limited with treating hypovolemia so I can't share too much in this area. There was just a lot about hypovolemia in a "procrit" thread so check that out too!Again, welcome, tearose Quote Link to comment Share on other sites More sharing options...
Merrill Posted January 25, 2005 Report Share Posted January 25, 2005 I can't speak for others -- but I can tell you that I was diagnosed with POTS and now IST -- and where I live (in a major US city with great access to medical care), medical tests for hypovolemia are not readily offered; they might not even be possible. (Maybe at Mayo in Rochester or Vanderbilt ...)My cardiologists focus their care on treating symptoms with non-medicinal actions (suggesting compression hose, salt, water, exercises to strengthen legs) and beta blockers. I don't think I'll ever know for sure whether low blood volume is to blame--because the salt and water contribute to increased blood volume and overall well being. Does that make sense?m Quote Link to comment Share on other sites More sharing options...
Radha Posted January 25, 2005 Report Share Posted January 25, 2005 hi, did you get a bad herx reaction when you took the antibiotics for lyme, if you did how did you deal with it? did you take anything to help with the worsening of symptoms? i cant tolerate any antibiotics coz it makes me so much worse, thanks for any info,radha Quote Link to comment Share on other sites More sharing options...
opus88 Posted January 25, 2005 Report Share Posted January 25, 2005 Many times, adding a truly good probiotic while taking antibiotics will keep people from feeling so crummy during the treatment. Antibiotics kill the good and bad bacteria, while probiotics replenish the good bacteria. Since bad bacteria grows more quickly, we often need help (via naturally fermented foods and/or supplements) to get the good ones to flourish. Quote Link to comment Share on other sites More sharing options...
Jenn202 Posted January 25, 2005 Author Report Share Posted January 25, 2005 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!<{POST_SNAPBACK}>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 ! Quote Link to comment Share on other sites More sharing options...
yogini Posted January 25, 2005 Report Share Posted January 25, 2005 Hi Jenn,Welcome to the board. Just curious- did they diagnose you as hypovolemic just based upon the fact that your HR and BP improved afer the IV? Because I think IVs (and salt and water) help most of us with our POTS symptoms, but I don't think we are all hypovolemic. Maybe Nina or someone else can explain more about why this is the case.Also, there is a 24 hr urine sodium test for hypovolemia, which isn't as accurate as the nuclear test, but may be helpful:Some patients may be given a 24-hour urinary sodium test. This test is useful in determining if one's plasma volume is normal (Low, 2000). A study of neurocardiogenic patients noted that those with a urinary sodium excretion <170 mmol/24 hrs. were more likely to have reduced plasma volume (El-Sayed & Hainsworth, 1996). These patients responded well to salt loading. Quote Link to comment Share on other sites More sharing options...
Jenn202 Posted January 25, 2005 Author Report Share Posted January 25, 2005 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 Quote Link to comment Share on other sites More sharing options...
yogini Posted January 25, 2005 Report Share Posted January 25, 2005 Hi Jenn,The urine sodium test is pretty painless - you just collect your urine in a jug for 24 hrs. I haven't heard of the water deprivation test before, but it sure doesn't sound like fun! -Rita Quote Link to comment Share on other sites More sharing options...
Jersey Girl Posted January 25, 2005 Report Share Posted January 25, 2005 Hi and welcome. I haven't had any tests to prove I am hypovolemic but I have been told that most likely I am and so I should drink a minimum of 64 ou per day and have frequent salty snacks. This helps a little, but I am curious about the procrit/epogen that some on this forum take to increase their blood volume because I am exhausted most of the day. I live in a county that has the highest incidence of lyme disease in the state but manysophisticated tests for Lyme came back negative. Martha Quote Link to comment Share on other sites More sharing options...
Jenn202 Posted January 25, 2005 Author Report Share Posted January 25, 2005 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. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted January 26, 2005 Report Share Posted January 26, 2005 Jenn, the blood volume test with the radioactive dye isn't that controversial. The half-life of the radiativity is pretty tame. Half-life has to do with how long the stuff remains radioactive--it's less than a few days, and it's at a very low level. You probably get more radioactive exposure in your day to day then during the test. Also, it's not a "dye" per se, rather it's a radio tagging of your actual blood, and allowing them to calcualate total volume based on how much radioativity is dispersed in the blood. Dye typically allows you to actually visualize stuff... the radio tagging does not let them "see your blood" in the literal sense, but rather allows them to apply a mathematical formula to figure out how much you have of each portion, white, red, etc.Yes, giving iv fluid will change the outcome of the test. However, it sounds like they were checking a suspicion that you where hypvolvemic, so from what you said, I take it they tested you prior to pushing fluids and then again after to test their volume hypothesis, yes?BTW, I've had the total blood volume test. It's pretty painless and did verify that I have a low red cell volume.Nina Quote Link to comment Share on other sites More sharing options...
briarrose Posted January 26, 2005 Report Share Posted January 26, 2005 I have been dealing with Hypovolemia. I take Epogen injections almost every week to help correct this problem. Quote Link to comment Share on other sites More sharing options...
Jenn202 Posted January 26, 2005 Author Report Share Posted January 26, 2005 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!! Quote Link to comment Share on other sites More sharing options...
steph37822 Posted January 26, 2005 Report Share Posted January 26, 2005 oops Quote Link to comment Share on other sites More sharing options...
Jenn202 Posted January 26, 2005 Author Report Share Posted January 26, 2005 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!!! Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted January 26, 2005 Report Share Posted January 26, 2005 the total blood volume is noninvasive. They'll put in an IV line with a hep lock on it so they don't have to stick you again through the day. First they take a tube from you, take it to the lab and radiotag it, then the re-inject it into the hep lock (this didn't hurt). A few hours later, they took another vial... there might have been a third draw, but it's been a few years and was such a minor test that it's not memorable. That's the whole thing. The only "invasive" part is the line they use to take the blood. During the time between blood draws I read a book, had some lunch, visited some friends who worked at the hospital.Nina Quote Link to comment Share on other sites More sharing options...
steph37822 Posted January 26, 2005 Report Share Posted January 26, 2005 oops Quote Link to comment Share on other sites More sharing options...
Jenn202 Posted January 26, 2005 Author Report Share Posted January 26, 2005 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 FluidsAnd 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. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 27, 2005 Report Share Posted January 27, 2005 Good luck tomorrow Jenn! Don't forget to write things down!! And never hesitate to ask more questions and yes, even ask for the answer to be re-explained or repeated!tearose Quote Link to comment Share on other sites More sharing options...
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