Guest guest Posted October 15, 2000 Report Share Posted October 15, 2000 >Date: Sun, 15 Oct 2000 09:16:30 -0500 >benitez_ricardo@... >From: Lucey <lucey001@...> >Subject: Re: Your story >Cc: >Bcc: >X-Attachments: > >, I can't type very well. Always relied on the secretary in >my department. Now I'm a slow poke. >My story in as few words as possible: 88 or 89 Killer flu >or what I thought was a flu, up to that point a prof of Art >and exposed to fumes and vapors from all kinds of toxins. >I never recovered my stregnth after that " flu " and could >only be up for a few hours and then need to sleep for a >few hours. Slowly I seemed to improve but never was able >to exercise after that. Then in 94 I guess you might say >I relapsed but now the dd caused severe sleep disorder. >heart pain and palipitations, boby aches, hormones went >crazy, numbness in face like a bells palsy, facial rash, >and an unreachable tickling ,crawling sensation in my inner ear. >the real brain problems began, couldn't drive without panic attacks, >my vision deteriorated, confusion, would get lost easily when >driving, alcohol intolerance, sensitivity to chemicals, light, sound, >voices, foods, and my IQ kept going down. I cant calculate >or help in any way my daughter's school work. I felt unable to >handle ANY stress. I simply had no tolerance for stress. So >my daughter would get to the mall with me and I'd become >slumped on a bench in misery > Then in 98 >my doc heard about mycoplasma in put me on doxy for 5 >months which destoyed my gut flora. Between the elavil >for sleep and doxy my food cravings became unmanagable. >I gained 30 lbs. I've since began Klonopin and doxipin elixer >and have lost 20 lbs. I've had an odd but I believe a significant >herpes-like sore on the roof of my mouth for 8 years that >throbs when I know a virus is active. I dont get fevers. I have >low body temperature but I can get a flu and sweat and have >a temp of 96. Lately my left leg has been throbbing and cramping. >I've been to emergency rm twice looking for a blood clots. I now go to >the movies and dont realize I had just seen it with my husband etc. >As I write this to you I am preparing to see Dr Cheney. I realize I can >use this >to tell him what is happening to me. >Thanks for listening, > > > > > > > >>, >> >>Please send me your story. I am very happy for you. I have been >>improving slowly. Almost 8 years is my tally. >> >>Thanks, >> >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2002 Report Share Posted July 3, 2002 Hi Helen, Talk away. It's the reason why this group was started! When will you get your CT scan report? My GP was the one who ordered mine when he suspected Conn's and when he saw the scan, told me it looked like there was, indeed, a tumor on my right adrenal and I needed to see a specialist as it was beyond him now. I have all the reports and communication between all my doctors who treated me here in Australia (I'm from Singapore) and it was such a refreshing change to be treated not only as an intelligent person but respected as well. For me, it was my depression that made it confusing for me as I never knew if my symptoms were psychosomatic or organic so it was a huge relief to have be told that my iron levels and potassium were low. At that time, we didn't know what caused this (we still don't know why my iron was low) and I had to return to S'pore as my father passed away suddenly from a stroke. Numb with shock and grief, I somehow managed to stay up on my feet and flew back to Australia a week later. My endo then confirmed it was a tumor and told me I could elect to have surgery to remove the gland. The whole gland needed to be removed otherwise the tumor would eventually rear its ugly head again. However, there was no urgency for surgery as I was responding well to spironolactone (my brand name: SPIRACTIN). The positive response to spiro also indicates that removal of the gland will also control my BP. In some people, spiro doesn't help their BP and removing the gland (and tumor) would not be much help. I don't know what they do with people like that, in that case! How do you feel now, Helen? Has your fatigue gone, now that your potassium level is within the normal range? Normal is 3.5 - 5.5. It's puzzling why my potassium is yo-yo-ing. It would get back to normal after potassium supplement which I took before diagnosis of Conn's then when I was put on spiro it went back down below. The it would go back to normal again (I was still on spiro!), normal upon routine pre-op check, and now it's borderline low. It's agitating me, having to wait one week for the plasma renin activity test results and my aldosterone result. Yesterday I started urinating a lot again - the first time that's happened since I went on spiro. I don't know the reason for that, either. My potassium couldn't have been depleted coz of polyuria as my trips to the loo were normal. It was only yesterday that my bladder started acting up and once I didn't make it to the loo on time and wet myyself! Ugh! I can't rush to the toilet like normal people since I'm partially disabled. Talking about disability, you're very fortunate not to have had a stroke like I did with your BP in the stratosphere! I was told that here, in Australia, as soon as a patient is not responding to hypertensive meds (like me!), they are checked for aldosteronism. If my cardiologist in Singapore had been more responsible and taken my complaints seriously, my stroke would have been avoided. As it turned out, when I complained about my BP being uncontrollable despite medication, all he'd say time and again, was " your blood pressure just doesn't behave itself. " My entire illness is a source of much grief because it wasn't confined to just a tumor in my adrenal. This little bugger caused my cardiomyopathy and I was told my heart was damaged. If it didn't get better, I'd have to have heart surgery. I was only 45 and had always been healhy until then. I wasn't overweight, being a consistent size 10 (UK) despite four children. Despite my heart condition, I continued to travel as my business required it, and when I woke up one day to find myself paralysed, no words can express what went on inside me. My illnesses affected my father enormously and he was always at me to go see my cardologist. When I'd drag my feet (literally!), he'd come over to my home with a credit card and told me to charge all my medical expenses with it. He inundated me with enough vitamins to open a health store, buy my favourite foods for my dinner when my husband was away etc. When he died after being in a coma for 3 days, my mom told my son he died because I worried him to death; that if I'd gotten well, my father wouldn't have died. I've had to tell myself it's just her grief talking but since my Conn's escalted during the time of his death, it is so hard for me. I am especially affected by the fact that the last time I talked to him, I had just been discharged from hospital due to my BP going on a rollercoaster ride again. I was groggy from meds so I was babbling rather incoherently to him. The last words I heard from him was as he knelt beside my bed and taking my hand, said " Elaine, Pa loves you. You get well, okay? Pa loves you very much. " Yeah, I know. I need therapy. I am getting it, just that my therapist is in Singapore so I have to wait till I fly back there at the end of July. I shuttle between Singapore and Australia, spending half the year in each country. What are your symptoms now, Helen? Yes, your previous GP was a horror! It's not true that everyone has high blood pressure as they get older. We have friends in their late 60s and early 70s with BP around 130/85 and pulse rate at 60. When my dad died (age 73), his muscle tone could put a young man to shame. My husband suspects my dad also had an adrenal problem because he had been complaining about his BP going up and down within a matter of minutes, tiredness etc. but all put down to aging by the doctors. If he had been sickly, I can understand but dad was very active physically and mentally. He was very involved in my business as well as his own and flew around the world playing golf or checking out restaurants. Got nothing to do with age and everything to do with the 'experts' attitude. Let me know how you feel now and what symtoms you are still having, if any. Keep me updated on what your doc say, OK? How do we let others know about this group? Do I post a message on a message board or what? Elaine --- Helen Pearson <Helen@...> wrote: > > It is so nice to be able to talk to other very > special people. I am just > part way through the maze and at each twist and turn > I often feel like > giving up then look at my children and darling > husband and know I can't > leave them. > > My symptoms go back right to 1988 when my youngest > child was born (we have 3 > of our own and then acquired another teenager last > year). There was nothing > you could go to your primary physician (GP here in > the UK) with - general > tiredness, gaining weight, back pain, running to the > toilet a lot, thirst. I > did go to a number of doctors in various places (at > that time my husband's > job meant we were moved every couple of years) and > did have some very > general tests done for sugar diabetes (borderline > negative) and iron levels > (higher than normal) and over the years have been > told it is because I had 3 > children under 5 and anyone would be tired, I had a > hectic lifestyle, it was > my age, and the back pain was caused by > osteoarthritis and of course I had > depression. My potassium levels were low and I was > given potassium salts and > the second test showed they were better but still > low. My Doc said that was > okay and to stop the salts but a third test would be > a waste of money. How I > wish I had insisted! He also told me a lot of my > problems were because I was > fat and gave me a diet to follow. I followed the > diet and my rate of weight > gain increased. Prior to giving birth to my third > child I was always > slightly underweight for my height. > > My previous GP was a horror. If he couldn't fix it > then he wasn't interested > and refused to refer anyone on to a specialist but > at least he did agree to > check out my blood pressure which was 190/105 at > that point. I knew it was > too high as I'd taken part in some research at work > as part of a control > group and had to be dropped from the programme > because of persistently > dangerously high blood pressure. My GP " monitored " > my " raised " BP every week > for nearly a year but did nothing. Told me it was > due to being obese and > also my age was to blame and everyone got high blood > pressure as they got > old (I am 43). > > Then I had a medical at work and they sent me > straight from work to my GP > with a note asking him to instigate treatment and > inform them of the outcome > but in the meantime I was too much of a risk at work > and would not be able > to continue my employment. At that point I was given > a beta-blocker to which > I was allergic (I woke up in the local hospital > emergency room and was told > my BP was off the scale and to see my GP asap). I > was then given Istin (a > calcium channel blocker) and I went into toxic > shock. My own GP was on > holiday when this happened and his locum saw me. The > locum managed to keep > me alive and refereed me to an allergist at the big > city hospital. That was > last Christmas (2001). > > When my own GP found out about the referral he was > not pleased and tried to > cancel it. He also gave me a diuretic (not a > potassium sparing type) which I > did not collect having checked it out with my best > friend who is a > pharmacist. I had a stand up fight with my GP and I > don't know if he did try > to cancel the appointment but it was already in the > system and I was seen > the following week. > > The allergist is wonderful. She is a very beautiful > South African Lady and > very thorough. I think they took a whole arm full of > blood and I had a real > good medical top to toe. My blood pressure was still > very high and the > potassium levels were down through the floor. They > also found I had severe > allergy to most starches and can only eat rice, > millet and tapioca starch > with confidence and maize starch if we are sure it > is not contaminated with > gluten or potato. This does make life interesting > when I need to eat! > > The allergist sent me to another part of the > hospital for in-patient > investigation of the blood pressure and lack of > potassium (at that stage the > K level was 1.8 and normal is 4.5 to 5.5 I think) > and my BP was so high it > could not be measured on a normal meter. They had to > add numbers to the > charts to record it. I have been in hospital for 3 > of the last 4 weeks and > have been wired for sound several times. I now hove > no secrets! The > endocrinologist is fabulous and talks to you not > down to you or over your > head. At one point he said to me " You are a highly > intelligent woman and > this must have been very distressing for you. The > mess of your body > chemistry will have caused some brain damage and you > will feel like your > memory is Swiss cheese......... " I was SO relieved. > At one point I really > thought I had lost my marbles. He also wrote key > points down and let me look > stuff up in his own reference library. > > > They have eliminated Cushings Disease and Rhea but > all along Simon (the > Endo) said he thought it could well be Conn's > Disease. The samples have to > go to a lab in Leeds where they will be evaluated > and it takes 4 to 5 weeks > to get results from the ELISA tests. As I have > worked in the biochemistry > evaluation field I know more about the mechanics of > these tests than the > doctors and did a mini-workshop for anyone > interested in the hospital about > how they worked and the pitfalls of both ELISA and > rapid tests. I was told > this had been valuable to everyone and not just the > medical students and > have been asked to repeat it next time I am in. I'll > take a kit in with me > then so they can see what I am talking about rather > than have to look at my > poor drawings. > > It was found I do well on spironolactone but have to > stick to one particular > brand as I do not have allergic reaction to it. My > BP is down to just above > normal and my K levels are keeping up reasonably > well. I have to eat bananas > and chocolate to keep them up there which is really > difficult! > > Now we wait for the test results which are due in a > couple of weeks. I had a > CT scan last week and hope that will show the > trouble as well. Do I have > tumours on one side or both? Is it operable? Will > the tumours regrow or grow > on the other adrenal gland? Who knows. > > Sorry this is so long - it helps just to talk. > > Helen > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2007 Report Share Posted September 19, 2007 Hi Doris, Bee's story is in the files in this folder. Candida Success Stories from Members Bee is away until next week with her ailing father. If I recall correctly Bee's diet now is pretty much the same one that she has described for us. But she has said that she can have a sweet once in a while without a problem. Donna in Indy > > hi, bee, > > can you give a short concise summary of what your experience was with > candida and what you did to overcome it and what your diet is like > now. although all the info you give is very helpful, i'd kind of like > to know what to expect in a way that's easy for me to read. > > thank you, > doris > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2010 Report Share Posted April 17, 2010 Hi Everybody There is only 14 days left for our proposal to get LDN into clinical trials, We really need your comments, A short story about how LDN has helped you. There are hundreds of thousands of people who never heard of LDN reading this proposal. So this is your chance to make your mark. Please it will only take a few minutes to do and anybody in the world can post. Please follow the link and register on the Your country your call site. This is an Irish government site here in Ireland. www.ldndatabase.com/proposal.html Thanks so much and Jacinta Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.