Guest guest Posted October 11, 1999 Report Share Posted October 11, 1999 In a message dated 10/8/99 11:24:45 AM Eastern Daylight Time, cyntha@... writes: << I'm sorry to say this Barnadette...but that stinks.....I and my husband have a right to make that decision. I have done much studying into the blood transfusion thing for infants. >> if the parents were not available and the count was way critical it was done...the Drs. felt if it was their child risking death ..there was no option of waiting..it would not be an option... remember... I am NOT talking a simple anemia in a preemie...those we were always able to wait a day till the parents were found, sometimes borderlines were able to wait 2-3 days...and yes some little ones got to wait a week to see if the supplemental vitamins were helping... I can't tell you how many attempts to find parents we made before they went for that administrative conssent..calling home, work, grandmothers, cousins...It was routine that we even sent police to the home to leave a message to call the hospital... our " universal consent " did not cover invasive procedures like spinal taps...cutdown iv's, transfusions of blood and/or plasma...even hyperalimentation ivs got seperate consents... the only thing we could do was all resp related type procedures..lab work...iv's oral and ng feeding and intubation and oxygen...even transport to our NICU had a seperate consent....and if a child was found to have a heart defect and needed to go to a kids cardiac unit 10 miles away, parents were awoken, and we took verbal consents till they got there to sign.... it may not make you feel better about what happened to your child, but just wanted to let you know...those things do not happen here in N.J. like it happened to you...and I am even talking back to 1979 when I first started working neonatal... The parents I worked with over the years for the most part knew every cc their kids were feeding...every B.M., viewed ultrasounds with the Dr., and were kept informed of any critical change...every pertinent lab work...... I am sorry you had to go thru what you did. The way you were treated is awful. Bernadette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 1999 Report Share Posted October 28, 1999 In a message dated 10/8/99 4:03:38 AM Eastern Daylight Time, lovey38@... writes: << I was told I could have a copy of my Home Health Care reports but it would cost me over $200 for them to make copies. >> the only thing I wanted from my home health care company was copies of all lab work, as the rest was nothing I didn't know...and the company graciously sent me all labs for me and my husband..I did do it while still under treatment. It always seems easier to request at the time of services, rather than backtracking...and they did not charge me a penny...not even for postage... Bernadette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 1999 Report Share Posted October 30, 1999 It funny how we all have become such experts in this disease, but it is also sad. I used to work at a Medical lab and always found it alarming that I knew more at age 18 from working at the lab, then some of the people from doctor's office did calling to get results. Especially some of the doctors! I remember one asking me to spell " RBC " (Red Blood Count), true story, no kidding. Then last week I was talking to the nurse in my doctor's office and she was trying to read me my tests results, and I was asking specific questions, just results really, and she said " gee, you know so much more about the tests needed and the results for this disease " . I appreciated her honesty and told her, I should , I have the disease I know what it does. But it didn't make me feel to comfortable or confident with my LLMD's knowledge of Lyme. Actually, I love my LLMD, but I don't think he is a true LLMD, he is general practice, but specializes in Fibromyalgia. But when I first went to him to see if I had Fibro, he was the one that said no, but you sure have classic symptoms of Lyme. From that day forward I trusted him, and he was right about the Lyme. I've found since then he is a great diagnostician, but sometimes wish he was more into research (can't blame him he has a family to feed). He is compassionate, and caring, and will just about try anything I ask, except for Flagyl and the IM anbx, bacteria? or bia??something, or Rocephin. Anyway, I digress............so much, sorry. Just found it an interesting topic. I guess as long as your treating doctor is willing to learn,that is an extra, mine seems willing, but sometimes I feel like I'm stepping on his pride when I suggest something he hasn't first ( , kind of like, I think it was you who said you bring your husband partly so the doctor will listen... something to that effect, I relate). So now I've learned to suggest it differently. Kind of like with our husbands, suggest it, and make them think they came up with it. Men and their egos! (Sorry guys, no hate " male " , I'm only speaking generally, I know there are quite a few exceptions, like my husband and so many men I've encountered here on the list). I should stay away from posting at night when my mind is allowed to jump all over the place. Actually, at least its (my mind) trying to work. Everyone hang in there! Vicki Happy Halloween (just wore me out with my grandchildren)! Re: [Lyme-aid] What's the law? >From: Memyo@... > >Well actually, when it comes to lyme, we read the results better than most >doctors. >Lea > ><< Margie, Where we like it or not. That is the law. The doctor ordered the >test > and therefore the results must go to him to be reviewed. The law assumes > people are not smart enough to interpret laboratory teat results. Many >people > are not. Lymies are smarter than the average person because we have had to > be. It is unfortunate that many of us have more knowledge that the people >who > have ordered the test. Carol A Labatorian in MI >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 1999 Report Share Posted October 31, 1999 Dear Vicki & All, As I read your post as to what you doctor will not try i.e. Rocephin, struck me, what if it's the one abx that will help you beyond belief as it dif for me? I cannot take doxy or any other tetracycline, just one pill and I am about to die from the vaginal problems, no kidding. If I were to take and take massive amounts of Diflucan and acidophilus, still I would be in terrible misery, so no way I can take it. The Mepron had a drastic effect on my dental health and I had a mouthful of bacteria and the teeth on left side in particular all had to be capped with bridgework. After beginning on the Rocephin IV, the difference in my gums between May and June was such that my dentist commented on the drastic improvement to pink healthy gums. So, apparently Mepron is not one of the abx I can take either. Clafron injections made me behave and feel like I was in an emotional Twilight Zone, and I believe my immune system reacted negatively. I had to take gamma globulin shots on a weekly basis. I would be a looney tune, so to speak on the Clafron, get the gamma shot, and within 24 hours be myself, but the benefit only lasted abour 48 hours. I don't believe I will be taking Clafron again. So, that's 3 of the handful of antibiotics I cannot take for Lyme, leaving me limited to the ones I've been able to tolerate and to get better on. I truly do understand the risks of long term Rocephin, and because I could not get blood work done at proper time, I stopped the Rocephin IM injections until the results of tests are know to my Lyme doctor and myself. They don't seem to help nearly as much as the Rocephin unfusions but because I was such a basket cast after being off the Rocephin Infusions for a while, the doctor lets me have the Rcephin IM but watches me very closely. I am wondering how others with Lyme have managed to stay on abx for long periods of time? If not the insurance companies, the the pharmacist, tend to want to report physician's for writing them for long term us of abxx? I believe we may be fast approaching the point wheree I will be unable to receive the Rosephin too, because of these kind of difficulties. I do get so very " ticked " when I realize that I may no longer be able to take the Rocephin even in IM form for injections! When I saw my doctor some weeks after being off the Rocephin I was in tears with the pain just pulling on my elastizied waist pants to get ready to go to see the doctor. My hair was filty from seating and all I could do was brush it down the best I culd and I've had better periods of pesonal hygiene. I was a wreck. I am assuming that I was in such a state because of continue die off and the toxins as I had been better even off the infusions for a while, which game me some hope that the sympstoms would not return, but they did and still are returning. It almost seems as if a second wave of die off occurred after I was off the infusions and just taking the oral Zithromax, which may be exactly what happened. All I know is that without the Rocephin injections, one every 12 hours, it wold have been extremely difficult for me at all. But because the insurance companies refuse to allow longer infusion treatment, because they insist on placing me in the category of someone who has just acquired Lyme, I just cannot get anymore infusion treatments. Thus, I wondered how others received infusions on and off for years? Do you know or have a clue. Does anyone else know and if necessary send me a reply by private post. If you email privately please put my name in subject line so I will be sure not to miss your reply. I belong to the Lyme Aid group, a chronic pain group, and when I was doing better on the infusions, I got interesed in quilting so below to a quilting group too, and all are by e-mail only, so my box can get pretty jammed if I don't feel up to downloading daily. That's why I ask folks who really don't want me to miss their message to put my name in the subject line then whatever else they want to put. The one thing that's now different after being on the abx infusions is that always before when abx stopped to give my body a rest, the pain subsided and often I had to cut back on the pain medication or get sick. This time the pain is worse off the abx and I must take the pain medication as prescribed. Has this happened to others? I feel certain it has, but have never read about it. That's one thing I found missing from 's book any mention of the pain that Lyme can cause. Yet I did find it mentioned in both Coping With Lymd Disease - Second Edition by Lang, and also The Widening Circle by Polly Murray. I realize not everyons has the horrific pain, but can't imagine why it really would not be mentioned in a book on Everything You Want To Know About Lyme. The little reference I found there, in no way resembled the amount of pain I have suffered with over the years. I began to wonder if I wasn't some strange type with a weird subset of LD. Later on the Lyme New Group, sci.med.diseases,lyme, I read of otherss having severe pain as a factor with LD. I know firsthand how difficult if not downright impossible it is to get treatedfor chronic pain, even in a state with a law that states I or anyone else with intractable chronic pain, either due to chronic or terminal illness, can ge prescribed the opiate medications when all other treatments have failed to control the pain. Yet, it took me 8 years to find someone willing to terat me for chronic pain. No, the medications are not a panacea for what ails me, but they do help most of the time to keep the pain from being totally overshelming. Because of the LD, I cannot be given those awful steroid injectionns, because of the steroids. Thank goodness for this fact! Wishing us all health and freedom from pain, both physical and emotional - Vicki & Ferraro (home) wrote: > From: " Vicki & Ferraro (home) " <ferraroa@...> > > It funny how we all have become such experts in this disease, but it is also > sad. I used to work at a Medical lab and always found it alarming that I > knew more at age 18 from working at the lab, then some of the people from > doctor's office did calling to get results. Especially some of the doctors! > I remember one asking me to spell " RBC " (Red Blood Count), true story, no > kidding. Then last week I was talking to the nurse in my doctor's office and > she was trying to read me my tests results, and I was asking specific > questions, just results really, and she said " gee, you know so much more > about the tests needed and the results for this disease " . I appreciated her > honesty and told her, I should , I have the disease I know what it does. > > But it didn't make me feel to comfortable or confident with my LLMD's > knowledge of Lyme. Actually, I love my LLMD, but I don't think he is a true > LLMD, he is general practice, but specializes in Fibromyalgia. But when I > first went to him to see if I had Fibro, he was the one that said no, but > you sure have classic symptoms of Lyme. From that day forward I trusted him, > and he was right about the Lyme. I've found since then he is a great > diagnostician, but sometimes wish he was more into research (can't blame him > he has a family to feed). He is compassionate, and caring, and will just > about try anything I ask, except for Flagyl and the IM anbx, bacteria? or > bia??something, or Rocephin. > > Anyway, I digress............so much, sorry. Just found it an interesting > topic. I guess as long as your treating doctor is willing to learn,that is > an extra, mine seems willing, but sometimes I feel like I'm stepping on his > pride when I suggest something he hasn't first ( , kind of like, I > think it was you who said you bring your husband partly so the doctor will > listen... something to that effect, I relate). So now I've learned to > suggest it differently. Kind of like with our husbands, suggest it, and make > them think they came up with it. Men and their egos! (Sorry guys, no hate > " male " , I'm only speaking generally, I know there are quite a few > exceptions, like my husband and so many men I've encountered here on the > list). I should stay away from posting at night when my mind is allowed to > jump all over the place. Actually, at least its (my mind) trying to work. > Everyone hang in there! > Vicki > Happy Halloween (just wore me out with my grandchildren)! > Re: [Lyme-aid] What's the law? > > >From: Memyo@... > > > >Well actually, when it comes to lyme, we read the results better than most > >doctors. > >Lea > > > ><< Margie, Where we like it or not. That is the law. The doctor ordered the > >test > > and therefore the results must go to him to be reviewed. The law assumes > > people are not smart enough to interpret laboratory teat results. Many > >people > > are not. Lymies are smarter than the average person because we have had to > > be. It is unfortunate that many of us have more knowledge that the people > >who > > have ordered the test. Carol A Labatorian in MI >> > > > > > Send to -Offtopiconelist messages unrelated to lyme, please. > /archive/lyme-aid > /archives.cgi/Lyme-Documents > To unsubscribe, send email to -unsubscribeonelist > You may substitute " subscribe " , or " digest " or " normal " for > the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 1999 Report Share Posted October 31, 1999 In a message dated 10/31/99 1:30:59 AM, swsftwtx@... writes: <<Mepron>> This drug is an " Antiprotozoal " and not an antibiotic. We all respond differently to medications. Ceftin, which is a close relative of Rocephin, caused my Lyme to bleb and flare. I wouldn't go near Rocephin with a 10 foot pole, yet for others it is the answer! Go figure! Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 1999 Report Share Posted November 10, 1999 , I see what you mean, I just think my doctor is worried about being persecuted like Dr. B. He is playing it safe, and trying to go by guidelines for treatment, except he will keep prescribing long term for me. I'm just waiting for my HMO to say no more. And we are getting ready to switch to Blue Cross (throughout Federal Employees Insurance). So hopefully that will help. I'm afraid to give up on my doctor, because he truly cares but I understand he is worried about losing his practice, etc. Thanks for your thoughts Vicki Re: [Lyme-aid] What's the law? >> >> >From: Memyo@... >> > >> >Well actually, when it comes to lyme, we read the results better than most >> >doctors. >> >Lea >> > >> ><< Margie, Where we like it or not. That is the law. The doctor ordered the >> >test >> > and therefore the results must go to him to be reviewed. The law assumes >> > people are not smart enough to interpret laboratory teat results. Many >> >people >> > are not. Lymies are smarter than the average person because we have had to >> > be. It is unfortunate that many of us have more knowledge that the people >> >who >> > have ordered the test. Carol A Labatorian in MI >> >> > >> >> > Send to -Offtopiconelist messages unrelated to lyme, please. >> /archive/lyme-aid >> /archives.cgi/Lyme-Documents >> To unsubscribe, send email to -unsubscribeonelist >> You may substitute " subscribe " , or " digest " or " normal " for >> the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. > >>Send to -Offtopiconelist messages unrelated to lyme, please. >/archive/lyme-aid >/archives.cgi/Lyme-Documents >To unsubscribe, send email to -unsubscribeonelist >You may substitute " subscribe " , or " digest " or " normal " for >the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 1999 Report Share Posted November 10, 1999 I am not an expert, but Blue Cross is one of the worst from what I've read as well as my own Aetna, and there is a list I will try to find and post it here too. I have a chance to go on to United Health Traditional, but only for 12 mos as Cobra. I believe because I'm Cobra they don't care. But I had the same level of non caring when I was still employed. I do know this, that I have an exteneded realtive by marriage who works for BCBS who will not even discuss anything with me to do with Lyme. It's not like we were ever close, but even knowing a family member is having trouble with receiving treatment however distant, he would not discuss with me. So I don't know what to say. I do know on this list I am thinking about, it comes from a concern who advises doctors and others how to get their money from these insurance companies on their list of difficult insurance companies. It does also have to do with what kind of coverage the employer purchases as not all plans are equal even if they have the same names, i.e. HMO or Traditional. Wishing you the best and hoping Blue Cross works out wonderfully for you. Wishing us all health and freedom from pain, both physical and emotional - P.S. You might ask someone on the sci.med.disease.lyme to post a question for you of what the 4 or 5 worst insurance companies are to have to obtain treatment for Lyme. No one ever posts the good guy insurance companies for fear of causing a run of new patients that would cause them to go broke if all the new patients had Lyme. And see what comes up from a query on the newsgroup where there is a larger number of lurkers, who may post in this instance. Vicki & Ferraro (home) wrote: > From: " Vicki & Ferraro (home) " <ferraroa@...> > > , > > I see what you mean, I just think my doctor is worried about being > persecuted like Dr. B. He is playing it safe, and trying to go by guidelines > for treatment, except he will keep prescribing long term for me. I'm just > waiting for my HMO to say no more. And we are getting ready to switch to > Blue Cross (throughout Federal Employees Insurance). So hopefully that will > help. I'm afraid to give up on my doctor, because he truly cares but I > understand he is worried about losing his practice, etc. > Thanks for your thoughts > Vicki > Re: [Lyme-aid] What's the law? > >> > >> >From: Memyo@... > >> > > >> >Well actually, when it comes to lyme, we read the results better than > most > >> >doctors. > >> >Lea > >> > > >> ><< Margie, Where we like it or not. That is the law. The doctor ordered > the > >> >test > >> > and therefore the results must go to him to be reviewed. The law > assumes > >> > people are not smart enough to interpret laboratory teat results. Many > >> >people > >> > are not. Lymies are smarter than the average person because we have had > to > >> > be. It is unfortunate that many of us have more knowledge that the > people > >> >who > >> > have ordered the test. Carol A Labatorian in MI >> > >> > > >> > >> > Send to -Offtopiconelist messages unrelated to lyme, > please. > >> /archive/lyme-aid > >> /archives.cgi/Lyme-Documents > >> To unsubscribe, send email to -unsubscribeonelist > >> You may substitute " subscribe " , or " digest " or " normal " for > >> the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave > blank both the message and subject header. > > > >>Send to -Offtopiconelist messages unrelated to lyme, please. > >/archive/lyme-aid > >/archives.cgi/Lyme-Documents > >To unsubscribe, send email to -unsubscribeonelist > >You may substitute " subscribe " , or " digest " or " normal " for > >the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank > both the message and subject header. > > > > > Send to -Offtopiconelist messages unrelated to lyme, please. > /archive/lyme-aid > /archives.cgi/Lyme-Documents > To unsubscribe, send email to -unsubscribeonelist > You may substitute " subscribe " , or " digest " or " normal " for > the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 1999 Report Share Posted November 10, 1999 Thanks , Actually we haven't switched yet and have a choice of many. But when I weighed the premiums and benefits it sounded like our best option. I'm afraid to go with an HMO because I'm afraid they will not cover long term antibiotics. Already I have to send in an appeal for them to cover my $219 IGenx Luat tests. They just said it wasn't covered, not necessary or something like that. But I'm taking info to my LLMD tomorrow in the hope that his office can help me decide. Thanks for your suggestion, I have until 12/15/99 to decide and will look into it thoroughly. I'm glad I mentioned it, because I thought someone had said something bad about BCBS, but couldn't remember Thanks Vicki Re: [Lyme-aid] What's the law? >> >> >> >> >From: Memyo@... >> >> > >> >> >Well actually, when it comes to lyme, we read the results better than >> most >> >> >doctors. >> >> >Lea >> >> > >> >> ><< Margie, Where we like it or not. That is the law. The doctor ordered >> the >> >> >test >> >> > and therefore the results must go to him to be reviewed. The law >> assumes >> >> > people are not smart enough to interpret laboratory teat results. Many >> >> >people >> >> > are not. Lymies are smarter than the average person because we have had >> to >> >> > be. It is unfortunate that many of us have more knowledge that the >> people >> >> >who >> >> > have ordered the test. Carol A Labatorian in MI >> >> >> > >> >> >> >> > Send to -Offtopiconelist messages unrelated to lyme, >> please. >> >> /archive/lyme-aid >> >> /archives.cgi/Lyme-Documents >> >> To unsubscribe, send email to -unsubscribeonelist >> >> You may substitute " subscribe " , or " digest " or " normal " for >> >> the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave >> blank both the message and subject header. >> > >> >>Send to -Offtopiconelist messages unrelated to lyme, please. >> >/archive/lyme-aid >> >/archives.cgi/Lyme-Documents >> >To unsubscribe, send email to -unsubscribeonelist >> >You may substitute " subscribe " , or " digest " or " normal " for >> >the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank >> both the message and subject header. >> > >> >> > Send to -Offtopiconelist messages unrelated to lyme, please. >> /archive/lyme-aid >> /archives.cgi/Lyme-Documents >> To unsubscribe, send email to -unsubscribeonelist >> You may substitute " subscribe " , or " digest " or " normal " for >> the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. > >>Send to -Offtopiconelist messages unrelated to lyme, please. >/archive/lyme-aid >/archives.cgi/Lyme-Documents >To unsubscribe, send email to -unsubscribeonelist >You may substitute " subscribe " , or " digest " or " normal " for >the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 1999 Report Share Posted November 11, 1999 I have Blue Cross in California. I know they're different around the country, but mine's been o.k. so far. No a peep from them about the IV now going on the third month and we're only going on an equivocal WB. But who knows about months from now. My doctor isn't worried (but it ain't his bill). beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 1999 Report Share Posted November 11, 1999 beth My doctor's office today, told me BC/BS is the very best and they have no problems at all with it. Your post made me feel better about it too. Thanks, we sign up in December, keeping my fingers crossed. But luckily my husband has open season once a year, so if its not good, I can always choose another. And since he is a Government employee, any of the plans we can choose from, can't deny me due to pre-existing conditions. Thank goodness! Take care Vicki Re: [Lyme-aid] What's the law? >From: beth <elsbeth@...> > >I have Blue Cross in California. I know they're different around the >country, but mine's been o.k. so far. No a peep from them about the IV now >going on the third month and we're only going on an equivocal WB. But who >knows about months from now. My doctor isn't worried (but it ain't his >bill). > >beth > >>Send to -Offtopiconelist messages unrelated to lyme, please. >/archive/lyme-aid >/archives.cgi/Lyme-Documents >To unsubscribe, send email to -unsubscribeonelist >You may substitute " subscribe " , or " digest " or " normal " for >the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. > Quote Link to comment Share on other sites More sharing options...
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