Guest guest Posted November 13, 2006 Report Share Posted November 13, 2006 > > Hello - I am new to this group, having been diagnosed with achalasia 2 > weeks ago. I am 52, live in Canberra, the beautiful capital city of > Australia. I have had swallowing difficulties for the last 30 years & > learned to cope by drinking heaps of water with food. Every now and > then I'd bring the food up if I didn't drink the water soon enough. > Just learned to live with it, assuming it was some sort of gag reflex > disorder. Then it got harder to swallow about a year ago, and I > finally did something about it - I saw a speech pathologist who > advised me to hold my breath while I swallow. I could not believe it > when this made an immediate difference - I didn't need water (and > still usually don't) with food, as long as I concentrate on making > sure I hold my breath at the right time. Does anyone else use this > technique? If so how much does it help? The speech pathologist also > strongly recommended I get checked out. So got an endoscope, then > barium swallow, and hey presto,achalasia - a diagnosis after all these > years. Now thanks to this group + the internet, I know much more > about what can be done. Manometry next Wednesday (will draw > inspiration from Tia), then a visit to a surgeon (who knows how much > experience Canberra surgeons have had with Heller myotomies? - will > find out soon enough). Thanks so much for running this group and for > everyone who contributes - it makes such a difference knowing there > are others who understand. > > Mal > Hi Mal, my name is Ray,Ihad a Heller Myotomy on 27/10/06.Was diagnosed March 06. Two weeks after srgery, things seem to be going ok. I live in Geelong,.If I can be of any help, please don't hesitate to contact me via e-mail.Will help you where I can. Regards Ray. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2006 Report Share Posted November 13, 2006 Hi Mal, Welcome! We consider ourselves new to this site too. The people in this group made a life difference to our family. I am so glad our Tia didn't have to suffer for years as you have had to. Tia wants me to send you some advice about the manometry ..."stay calm, relax your body and good luck". It is amazing how well Tia is already doing and it hasn't even been a week since her surgery. Best of luck to you! gibson_mal <malgibson@...> wrote: Hello - I am new to this group, having been diagnosed with achalasia 2weeks ago. I am 52, live in Canberra, the beautiful capital city ofAustralia. I have had swallowing difficulties for the last 30 years & learned to cope by drinking heaps of water with food. Every now andthen I'd bring the food up if I didn't drink the water soon enough. Just learned to live with it, assuming it was some sort of gag reflexdisorder. Then it got harder to swallow about a year ago, and Ifinally did something about it - I saw a speech pathologist whoadvised me to hold my breath while I swallow. I could not believe itwhen this made an immediate difference - I didn't need water (andstill usually don't) with food, as long as I concentrate on makingsure I hold my breath at the right time. Does anyone else use thistechnique? If so how much does it help? The speech pathologist alsostrongly recommended I get checked out. So got an endoscope, thenbarium swallow, and hey presto,achalasia - a diagnosis after all theseyears. Now thanks to this group + the internet, I know much moreabout what can be done. Manometry next Wednesday (will drawinspiration from Tia), then a visit to a surgeon (who knows how muchexperience Canberra surgeons have had with Heller myotomies? - willfind out soon enough). Thanks so much for running this group and foreveryone who contributes - it makes such a difference knowing thereare others who understand. Mal Sponsored Link Try Netflix today! With plans starting at only $5.99 a month what are you waiting for? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2006 Report Share Posted November 13, 2006 Thanks for your note , and thanks too to Tia - I shall be thinking about her and taking her advice tomorrow. Mal > Hello - I am new to this group, having been diagnosed with achalasia 2 > weeks ago. I am 52, live in Canberra, the beautiful capital city of > Australia. I have had swallowing difficulties for the last 30 years & > learned to cope by drinking heaps of water with food. Every now and > then I'd bring the food up if I didn't drink the water soon enough. > Just learned to live with it, assuming it was some sort of gag reflex > disorder. Then it got harder to swallow about a year ago, and I > finally did something about it - I saw a speech pathologist who > advised me to hold my breath while I swallow. I could not believe it > when this made an immediate difference - I didn't need water (and > still usually don't) with food, as long as I concentrate on making > sure I hold my breath at the right time. Does anyone else use this > technique? If so how much does it help? The speech pathologist also > strongly recommended I get checked out. So got an endoscope, then > barium swallow, and hey presto,achalasia - a diagnosis after all these > years. Now thanks to this group + the internet, I know much more > about what can be done. Manometry next Wednesday (will draw > inspiration from Tia), then a visit to a surgeon (who knows how much > experience Canberra surgeons have had with Heller myotomies? - will > find out soon enough). Thanks so much for running this group and for > everyone who contributes - it makes such a difference knowing there > are others who understand. > > Mal > > > > > > > --------------------------------- > Sponsored Link > > Try Netflix today! With plans starting at only $5.99 a month what are you waiting for? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2007 Report Share Posted September 23, 2007 I have other photos, which I will have to edit their size before sending.The one I've just sent is of the drain in my bathtub at the previous apartment--the one that has the abandoned bird nests. The apartment is in the attic space... which explains the severity of the infestation.The mites are so small that they can and do go anywhere! I have a photo I'll edit the size on showing the mites "nesting" inside of my eyeglass case! I even found them in the seams inside of shoes and handbags. Luggage? GPS? Comic books? Check out fitting gifts for grads at Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2007 Report Share Posted September 23, 2007 You mention that your doctor did not look at the "mites" with a microscope, and there does not seem to be an official examination and diagnosis of the creatures, yet you tell us you are infested with Dermanyssus Gallinae. This seems like a guess and not scientific fact. I think we need to be very careful about asserting what we are infested with. If a sample has been carefully and properly examined by a qualified professional and that professional had identified with certainty what the creature is, then that is something that we can say is scientific fact. (And I would demand copies of any paperwork by the doctors/scientists/labs.) Otherwise, it's a best guess and we should clearly state that.See what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2007 Report Share Posted September 23, 2007 Hello again to all, We have another source of support over at the Avian Web http://www.avianweb.com Here's what Sibylle Faye had to say in her email: "I took the liberty of adding some of the information you shared on the Bird Mites page – plus the photos! Thanks! They are very helpful. I have created a map that people can add their information to. For testing purposes, I have added your location. This map will only be effective if as many as possible sufferers add their own information: http://www.communitywalk.com/avianweb If you can forward it on, it would be really appreciated. I only created the map an hour ago. If there are any problems, please let me know. Once I have had enough people add their information, I will add the map to the website allowing web visitors to mark their location. This could be a GREAT resource, if it is utilized as I hope. Thanks again! Sibylle Faye" Be a better Heartthrob. Get better relationship answers from someone who knows. Answers - Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2007 Report Share Posted September 24, 2007 My goodness! I could have written this one! My appt with the infectious disease is OCT 5; my colonscopy is Fri. My awareness started just before yours, my cat is scratching, and Revolution doesn't help. Virtually ALL my medical contacts have been awful. And here's the worst: I begged my doctor to order the fecal. I had been taking anti-parasitic stuff for 3 day before submitting the sample. IT WAS FULL OF WORMS, all sizes, as well as all those "dots" - mostly black, some red, and probably a lot of invisible white ones. I got a call today from doctors office - the lab didn't find any parasites!!!!! OK, I am NOT crazy. These "things" are not mites. They are some kind of worm, unidentified. Everyday more and more videos appear on Utube. That's how I discovered that there are billions of them living in the pores of those afflicted. I read that hydrogen peroxide helps. I tried it - they started emerging from EVERY PORE. I gave it some long hard thought; it is OXYDATION that kills them, or at least makes them want to ru away. I had a tube of Diabetic cream that oxygenates to help healing. I used that, and started massaging it in. These horrible things kept coming out and I kept massaging and "rolling" them. I couldn't believe what was hiding beneath the surface. I'm Caucasian, but many of of these things were black & large - but never visible till they emerged. Then I remembered another product, which I had on hand, called Terra Cleanse, which is microbes that organic farmers use to clean up the soil. I use it for my bird room, to clean. It is one tablespoon per gallon of water, so it goes a long way. For the first time since this hell began, I am making progress - not the kind of progress that I THOUGHT I was making in the past, only to be bombarded with a worse assault. The Terra Cleanse is completely safe, no odor, no residue, don't have to wipe it up if you don't have time. It's actually best to let it air dry, anyway. I use it on my skin - makes it so soft, because it breaks down dead skin without drying or harming "live" flesh one bit. Then I apply the Diabetic cream (available in supermarkets, Walgreens, etc). Why didn't the lab find any parasites (when the sample was 80% worms)? I believe that the government KNOWS about this, and is trying to squelch a panic by saying very much (yes, Morgellons - the name of the disease - has been added to the Center for Disease Control's list of diseases). It is greatly minimized, my plea to them for help went unanswered - I think they added it because of the mounting pressure. To totally ignore it would be very suspicious; to do just a bit makes it look like they are being "responsive". I think that the labs that do fecals are under instructions to contact the CDC if they get one of these.... Hello to all,Although I have spent many hours at the birdmites.org site over thepast several weeks, I only noticed the link to this group today, andam grateful that support and information is being made so freelyavailable. Thank you.As others who have/are experiencing an infestation of bird mites, atfirst I thought it was just fleas. I have two male cats who never gooutside, and have never had fleas before, but back in May I began tonotice them both scratching and biting at themselves, and began to seebites on myself as well.After about a month of following the suggested methods to rid fleas,despite no longer seeing any, the cats and I were still getting bites. One of the methods I was following was to drop fur removed from thecats with a flea comb into a dishpan of hot soapy water. All along Iwas seeing these little red dots on the bottom of the pan, but I hadmistakenly assumed those to be "flea dirt." Wrong! Now that the fleaswere gone, all that I was collecting off the cats were those red dots.Flashlight and magnifying glass in hand, I saw that the red dots wereinsects! That was on August 17th. I immediately called a friend whobegan working in the carpentry division of a large and reputablepest-control outfit a few months earlier, and told him of thediscovery. He advised me to get samples, place them in alcohol, andbring them to the vet, which I did. On August 18th a vet took a lookat them in the jar--didn't seem to think a microscopic examination wasnecessary, said they looked like mites to her, and prescribed aproduct called Revolution.On the 17th and 18th I phoned the landlord and advised of the situation.Well... here it is the 23rd of September, and my cats and I are stillinfested with Dermanyssus Gallinae, despite moving into a newapartment without carpeting and without much of my belongings. Infact, I have limited my wardrobe to two changes of synthetic fabrics,which I steam clean upon removal with Shark's "Super Steamer"I've been following the strategies outlined at the birdmites.org siteto the best of my ability, although I have refrained from using any ofthe toxic pesticides.It has been and continues to be a nightmare. Medical professionalshave either been unwilling to treat me, or had little awareness orinformation as to how to treat these parasites. I do have anappointment scheduled with an Infectious Disease Center, but thatisn't until 5th October. I am having a colonscopy and endoscopy donetomorrow, as the parasites are also internal. I lost 15 pounds inabout a month. These mites are in my respiratory system--my sinusesand lungs, and I don't know where else!As many have shared, my whole life has been turned upside down andinside out. I spend several hours a day doing battle against themites, which at times seems to be working, but at other times seems asif I have accomplished nil.I am exhausted.I do have some specific questions, which I will post with appropriatetitles.I look forward to sharing whatever information I can, and offering asmuch support to others.One thing more--the direction I am taking now is to follow theprotocol used by poultry farmers, and look less to human and domesticpet care providers for answers.Forgive the long post. See what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2007 Report Share Posted September 24, 2007 Yes - anything you touch - telephone, wall switches, keyboard, etc, will get a BIG infeatation. My cell phone wouldn't charge. I took it apart & it was infested - cleaned it, then it charged. My printer stopped working. Sprayed it with Terra Cleanse & it works again. Sound system kept shutting off & on - sprayed Terra cleanse into the push botton for on/off - works fine. This is a BIGGIE!!! It's either a government experiment that "got away" or it came in from China, where they have a huge mite & other insect problem. In a message dated 9/23/2007 11:58:27 A.M. Eastern Daylight Time, borderlinenos@... writes: I have other photos, which I will have to edit their size before sending.The one I've just sent is of the drain in my bathtub at the previous apartment--the one that has the abandoned bird nests. The apartment is in the attic space... which explains the severity of the infestation.The mites are so small that they can and do go anywhere! I have a photo I'll edit the size on showing the mites "nesting" inside of my eyeglass case! I even found them in the seams inside of shoes and handbags. See what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2007 Report Share Posted September 25, 2007 I think it would be helpful if people would let us know what state they're in. I'm in PA but only had a brief experience with mites from a wren nest. The highest concentration of Morgellons cases are in Texas right now, although it is in every state in the nation. It would be interesting to identify where these cases are occurring. Are they primarily in states where there's no frost to kill off the bugs? Is there some kind of a pattern? Is that pattern moving, changing? Brrdie, you have told us you are in Florida. Where is everyone else?See what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2007 Report Share Posted September 25, 2007 This isn't making any sense. What did the doctor say when you told him/her you SAW the worms, yet the lab says no parasites? What were they, then? Did your doctor examine the sample with you and acknowledge the appearance of what looked like worms? If not, perhaps that's what should be done. This way, when the next lab comes back negative, your doctor can say, "I saw them too," and perhaps send another sample to a different lab or call in a team of doctors. To do otherwise (i.e., to just accept it and do nothing) seems like malpractice to me. Have you tried calling the people in the lab who actually did the tests? I would demand contact information and speak directly to the person who performed the test.See what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2007 Report Share Posted September 25, 2007 In a message dated 9/25/2007 11:21:34 P.M. Eastern Daylight Time, SanMol2@... writes: I think it would be helpful if people would let us know what state they're in. I'm in PA but only had a brief experience with mites from a wren nest. The highest concentration of Morgellons cases are in Texas right now, although it is in every state in the nation. It would be interesting to identify where these cases are occurring. Are they primarily in states where there's no frost to kill off the bugs? Is there some kind of a pattern? Is that pattern moving, changing? Brrdie, you have told us you are in Florida. Where is everyone else? I read somewhere Texas, FL, and California are the hardest hit. The temperature issue makes a lot of sense. Would love to know if anyone else is from FL. Interesting point - I went to Walmart (someone said they had sun lamps - not!). I checked with a clerk and she said, gee, I haven't seen those in any stores in YEARS. I checked the pharmacy - the pharmacist said I was the 2nd person that day to be looking for one. Bet it was "one of us"!See what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2007 Report Share Posted September 25, 2007 In a message dated 9/25/2007 11:31:04 P.M. Eastern Daylight Time, SanMol2@... writes: This isn't making any sense. What did the doctor say when you told him/her you SAW the worms, yet the lab says no parasites? What were they, then? "Well, they examined them under a microscope" And I said - you don't NEED a microscope - this things were BIG and LOTS of them!" I told her it was impossible. Did your doctor examine the sample with you and acknowledge the appearance of what looked like worms? If not, perhaps that's what should be done. This way, when the next lab comes back negative, your doctor can say, "I saw them too," and perhaps send another sample to a different lab or call in a team of doctors The way it works - she writes a lab slip, I go to the place (Quest Diagnostics), get the "package" with the instructions, bring it back to the lab in a bag and they send it off...doctor never sees it. .. To do otherwise (i.e., to just accept it and do nothing) seems like malpractice to me. Have you tried calling the people in the lab who actually did the tests? I would demand contact information and speak directly to the person who performed the test. She called and left a message today for me to call tomorrow "to discuss test results" - I also had 5 vials of blood taken - so when I talk to her tomorrow I will be insistent on the discrepancy. I also have the number for the lab, so I can call them. Thursday I see a gastroenterologist, and I sure hope he takes a peek, though the count is way down from all the junk I've been using to reduce them. There is definitely something very, very fishy here. And the other lady who didn't follow the instructions exactly - well, if she had worms, that should not have negated any results. They don't just disappear. See what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 Hi there, I am from California (San Diego) and I understand that there are many cases here and many cases of Morgellons in the San Francisco area. Has anyone experienced the black specks surfacing from their skin? Just curious if this is part of the bird mite progression. Thanks! Dee ------------------------------- > > > In a message dated 9/25/2007 11:21:34 P.M. Eastern Daylight Time, > SanMol2@... writes: > > > > > I think it would be helpful if people would let us know what state they're > in. I'm in PA but only had a brief experience with mites from a wren nest. > The highest concentration of Morgellons cases are in Texas right now, although > it is in every state in the nation. It would be interesting to identify > where these cases are occurring. Are they primarily in states where there's no > frost to kill off the bugs? Is there some kind of a pattern? Is that > pattern moving, changing? Brrdie, you have told us you are in Florida. Where is > everyone else? > > > > > > > I read somewhere Texas, FL, and California are the hardest hit. The > temperature issue makes a lot of sense. > Would love to know if anyone else is from FL. > Interesting point - I went to Walmart (someone said they had sun lamps - > not!). I checked with a clerk and she said, gee, I haven't seen those in any > stores in YEARS. I checked the pharmacy - the pharmacist said I was the 2nd > person that day to be looking for one. Bet it was " one of us " ! > > > > ************************************** See what's new at http://www.aol.com > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2007 Report Share Posted September 26, 2007 Hello byrd_brane,It appears that the information I relayed has caused some confusion...> You mention that your doctor did not look at the "mites" with a microscope, > and there does not seem to be an official examination and diagnosis of the > creatures, yet you tell us you are infested with Dermanyssus Gallinae.The first time I brought a specimen to the vet, she did not use a microscope, but instead just looked at the numerous little red bugs through the glass jar; however, the third specimens that were submitted were identified by a different vet as Dermanyssus Gallinae.Also, specimens that were taken off of my body were submitted to a lab by my personal physician on 8-27-09, and were identified by that lab as bird mites.Unfortunately, the medical professionals that I have thus far consulted seem ill-informed on bird mites, and their ability to infect humans and other animals. So, in addition to battling the mites, I find myself battling the health care providers, as well as the government agencies I've contacted, such as the Board of Health, Housing Authority, Town Code Enforcement, etc.Lorelei>> You mention that your doctor did not look at the "mites" with a microscope, > and there does not seem to be an official examination and diagnosis of the > creatures, yet you tell us you are infested with Dermanyssus Gallinae. This > seems like a guess and not scientific fact. I think we need to be very careful > about asserting what we are infested with. If a sample has been carefully > and properly examined by a qualified professional and that professional had > identified with certainty what the creature is, then that is something that we > can say is scientific fact. (And I would demand copies of any paperwork by > the doctors/scientists/labs.) Otherwise, it's a best guess and we should > clearly state that. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2007 Report Share Posted October 9, 2007 Hello to all,What with all that has taken place over the past couple weeks of my life, I had almost forgotten that I made a video while living in the thick of the infestation... back at the attic apartment... yes, I was living in the roof... and right above my ceiling was where the birds had their nests... so, needless to say, the infestation was severe.Anyway... should you be interested, the video is at YouTube, entitled, "Is this another freaking mite"Enjoy!http://www.youtube.com/watch?v=hTWJtEeKpu4 Lorelei Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2008 Report Share Posted February 6, 2008 Hi Moneytree, welcome to the forum and I hope you get the help and support you need. First and foremost, can you tell us how you actually feel. Are you having any problems with your present dose of thyroxine.? Are you still suffering with any symptoms? When you get your next blood results, do make sure you get the reference range for each test and post them here as often, doctors are not sure exactly how to interpret them. the pathologoy lab will write 'normal' on a test result and this makes doctors believe you are 'normal' when it can be very far from the real truth. Any questions, ask away as there will be somebody here who will be able to help you. luv - Sheila Hello everyone,I joined the group today, so I thought I would first introduce myself...I'm a 23 year old British female, currently residing in Malta(Europe). Due to radiotherapy treatment that I had as a child, I'vehad thyroid issues for many years, but thanks to my NHS oncologistkeeping me in the dark, they all went under the radar until I was 18when I was diagnosed with having a large goiter. Surgery was the best option for me at the time, so I had the growthand the right half of my thyroid removed. All went well, and therecovery wasn't too bad, but 5 years down the line, and I had anothergoiter on the remaining half! This time I went privately, and after discussing my options with thesurgeon, I opted for surgery once more. The remaining half of mythyroid was removed (with the goiter of course), and about 4 weekspost surgery, I was given Levothyroxine at 50mcg daily. That was backin November 2007 though, and I am now on 100mcg of Levothyroxine (I'mawaiting the next batch of bloods before any changes to the dose aremade).So that's me up to now... and I've made it as brief as possible, buthey... these things are rarely simple are they when it comes tothyroid issues? No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.19.19/1258 - Release Date: 04/02/2008 10:10 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2008 Report Share Posted February 6, 2008 Hello Sheila, Thanks for your reply. As for how I am feeling, I think I am hypoactive still, as my hands are very cold (my finger nails sometimes go blue), my skin is terribly dry no matter how many lotions I use, and I'm getting fatigued again. This I suspect is due to the bad clinic that I last went to for the blood however, as I was first told that I'd have the blood results in two days, but was then told to wait two weeks! I should have them by Friday, but still, I needed them ASAP as it's early days for me. Needless to say, I won't be going back to the clinic again! With regards to the results... so far, all of my results have given a specific score along with the accepted ranges, but we'll see what happens when I get my next batch of results. Despite the bad clinic, my GP is wonderful, and if needed, will refer me to a endocrinologist next time I see her. My only problem at the moment is trying to find Levothyroxine tablets, as not all of the pharmacies have it at the moment, thanks to some lazy sales reps who gave the whole stock to about three pharmacies! > Hi Moneytree, welcome to the forum and I hope you get the help and support you need. > > First and foremost, can you tell us how you actually feel. Are you having any problems with your present dose of thyroxine.? Are you still suffering with any symptoms? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2008 Report Share Posted February 13, 2008 Hello Irene and welcome to the forum, I am sure you will find lots of help here. I fully understand how you feel as I was also 'diagnosed' with fibromyalgia, much improved now though with treatment for hypothyroidism. You will get help to find the right doctors here - so check back tomorrow when there are more people around and Im sure there will be lots of advice and help. So chin up gal you've found the right place. Gill Thank you, first of all for making a stand for what you believe in. I've been banging my head on the Doctors door for over twenty years and feel as though I'm swimming against the tide, drowning at times but rallying again to fight my own cause. I have just turned 49 years and feel life is passing me by and the Doctors are content to leave me to it as I am NORMAL. I'm going to have "Irene MacIntyre was anything but Normal" put on my tombstone.I suffered from horrendous period pains as a teenager and had problems swallowing amongst other things and was checked for Thyroid problems and had an esphoguscoptomy when I was in my early 20's. I was NORMAL then and was left to endure PMS. When my mother was having difficulties with her thyroid in the late 1980's, I read "Solved: the Riddle of Illness" by Brora . After the first couple of chapters, I realised that the book could have been written for me. I found highlighting pens and went through the book underlining relevant areas. It was more colourful than a story from Balamory. I passed the book onto my Doctor who thought it was "interesting" but because the tests were still normal her hands were tied. At the time I was also undergoing an examination for abdominal pains and infertility. I was offered IVF, but did not go down that route as I felt I needed to have my health problems resolved first and that I would fall pregnant naturally.I did eventually have a baby. It all went pear-shaped after that. Every night I lay awake in agony. I spent more time crawling in my sons first few years than he did. I couldn't take pain killers as I was hoping for another child but in 1998 I was hospitalized as the large vertical muscles in my back went into spasm. After a fortnight I was released into the care of my Parents, husband and son in tow. I then had to come to the decision that tramadol and amitriptyline would give me some quality of life with my family and that I wasn't in a fit state to have another child. A very painful decision.I have struggled over the years. Upping the medication means I do better through the night and am more mobile the next day but it leaves me with the "lights are on, nobodies home" feeling, which on top of the fibro fog makes things hard work. Checking in with the doctor every so often in the hope that I could get help, I've had my thyroid regularly monitored along with my liver function. (I seem to have an intolerance to Amitriptyline but sorted this on my own with an Australian Herbal Detox system. The Gasto man was not pleased, surprised? I pushed the idea of hypothyroidism again a few years ago and the Doctor did a test for autoimmune disease. This was positive, or whatever, so she's happy to monitor my thyroid every 3 months. As I said to my Doctor, sort my problem and I won't need to take all the pain killers. This month's result is TSH of 4.94. I was 5.9 towards the end of last year, 2.5 at the beginning of the year.I`ve been more concerned of late with having flutterings or tingling in the throat, through the night mainly. This comes along with a terrible feeling of anxiety. I have not been referred to an endocrinologist as the endo man in our local hospital refuses to see anyone who hasn't attained the magic 10. Life can be very complicated. In amongst the liver checks the Gastro man sent me for a colonoscopy and an upper Gi endoscopy as I appear to be anaemic. I was given the all clear but the examination has upset the muscle at the top of my stomach. I've had several episode where this muscle goes into spasm and unfortunately this anxiety thing through the night is enough to trigger the spasm. I never had any problem here before. As if the FMS wasn't enough torture to endure. So sorry to drone on. I have 101 instances like these, many of which you will have come across from others. I need help to find the right people before the NHS makes me a bigger mess than I am already. How can it be acceptable to keep feeding me painkillers that are poisoning my liver and to probe every orifice (2 laparoscopies, 2 endoscopies 2 upper GI endoscopies and a partridge in a pear tree) leaving me just that little bit worst each time. What kind of system is prepared to pay hundreds of pounds on tests and exploratories and not actually do a thing to treat the source of the problem. I'm a desparate woman. I still have the young woman full of life and vitality inside this body of a 93 year old, struggling to break free from the chains. Knowing that there are many others out there suffering the same just fills me with sadness and anger. Several members of my family are hypothyroid. None of them keeps very well. I wrote to my MP last year to ask him to sign the Early Day Motion. I've chased him up for a response and won't let it lie. In the meantime, is there a list of sympathetic endocrinologists or someone that I can see to make sure I'm not barking up the wrong tree, or just barking. I read that one of the things FMS sufferers have in common is a contempt for the medical profession. 25 years without help, pain is a powerful conditioner. I'll close now before I overstay my welcome.Bless you all, I mean that with all my heart. Love Irene MacIntyrePS I do hope you can decipher my ramblings. Internal Virus Database is out-of-date.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.17.6/1192 - Release Date: 21/12/07 13:17 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2008 Report Share Posted February 13, 2008 Hi Irene, Welcome to the forum. I don't think that you will get the help you need within the NHS too bound up with blood tests and not enough looking at symptoms. There are private docs who have a more open mind. I'm sure Sheila will give you names if you email her privately. Several members of my family are hypothyroid. None of them keeps very well. Bless you all, I mean that with all my heart. Love Irene MacIntyre PS I do hope you can decipher my ramblings. Messages are not a substitute for professional medical advice. Always consult with a suitably qualified practitioner before changing medication. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2008 Report Share Posted February 13, 2008 Welcome and I hope you find as much help as I have from joining this forum. Also hope you get the desired pills asap and feel better soon luv Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2008 Report Share Posted February 14, 2008 HI Irene Welcome to our happy little band of Thyroidians and I am sure you will get all the help and support you need. There is lots of information in our Files (you can get there from the Home Page on our forum website or you can click on 'Files' at the end of this message if you opted to receive individual emails. Look also through the many links that are helpful. You can also look at the photo's of some of our members to get an idea who you are 'talking' to - and if you want to post a picture of yourself, we would be very pleased to 'meet' you. It is good to post pictures 'before' 'during' and 'after' treatment if possible. I bet you are getting those severe muscle spasms in your lower back because you are not converting the inactive T4 synthetic hormone to the active T3 (triiodothyronine) T3 is needed by every cell in your body to make it function. When I was on t4 only, I also had very severe back problems. Couldn't stand up from sitting, couldn't get out of the car, pain was SO severe. Sometimes, I had to lie on our lounge floor for 2 to 3 weeks and during that time, could hardly get myself to sit on a bucket to pee (too much knowledge, I know!) - but it was fact. My GP told me I had a prolapsed disc. I saw a private doctor who told me I was not converting to T3 and this was causing my muscles to go into spasm. He started me on natural thyroid extract (Armour) as this has all the thyroid hormones your body needs - I have never had any of that tremendous pain back and this is now getting on for four years ago. Doctors must do their research and not listen to the British Thyroid Association who are supposed to be the 'leaders' in the field of thyroid disease - but for whatever reason, their diagnosing protocol and treatment protocol using synthetic Thyroxine only is all wrong. We patients are trying to educate them, but as yet, they don't appear to want to hear. You must be really assertive and make an appointment with your GP specifically to ask to be referred to a specialist in the field of hypothyroidism. Your doctor is a GP. In America the top of the tSH range is 3.0 - so you would be considered hypothyroid and treated. In Germany, the top of the TSH reference range is 2.5. - so you are WELL hypothyroid and again, they would be treating you. Check in our FILES in this forums website and scroll down until you find the file entitled "First visit to Endo". Write down all the questions you want to ask on a sheet of paper, and list all the symptoms against our 'Symptoms and Signs List" that you will also find in our Files. Take these with you when you see your GP (and also the endo) to back up your request for a referral. Giving you prescriptions for pain killers is yet another reason for them to give you a proper diagnosis and once treated with the correct thyroid hormone replacement, all these other ailments would be gone. Ask for a test to see if you have antibodies to your thyroid (from what your say it could be that you have. Antibodies to your thyroid see your thyroid tissue as public enemy number one and set about its destruction. You might be having an antibody attack because of those 'fluttering' feelings in your throat area. Also, ask for your Ferritin level (stored iron) to be checked and your B12. These are very important. Where in the UK do you live. Let us know and we will see if we know of a good doctor (who knows thyroid) in your area. I'm not sure what is happening anymore about the EDM - there were a few MP's who signed it and then it came to a stand-still. I was told that the MP's had been approached to say that whatever they signed, the BTA were NOT going to change their diagnosing and treatment protocol, so they would be simply wasting their time. This came from an MP to his constituent, who passed it on to me. Meanwhile, read everything in our files, especially about the adrenal/thyroid connection - the candida albicans/thyroid connection, - the low ferritin/thyroid connection. There IS a lot of reading, but if you want to make yourself well, you must learn to understand every aspect of your thyroid and what's good and what's bad. There IS light at the end of the tunnel, as many members will tell you. Luv - Sheila Several members of my family are hypothyroid. None of them keeps very well. I wrote to my MP last year to ask him to sign the Early Day Motion. I've chased him up for a response and won't let it lie. In the meantime, is there a list of sympathetic endocrinologists or someone that I can see to make sure I'm not barking up the wrong tree, or just barking. I read that one of the things FMS sufferers have in common is a contempt for the medical profession. 25 years without help, pain is a powerful conditioner. I'll close now before I overstay my welcome.Bless you all, I mean that with all my heart. Love Irene MacIntyrePS I do hope you can decipher my ramblings. No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.20.4/1276 - Release Date: 13/02/2008 09:41 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2008 Report Share Posted February 15, 2008 Hi Sheila, Thanks for the lo-down. Sorry to take so long to come back, broadband was down for a day. I'm so slow at the moment and am having to read everything several times till it goes in. (Lights are on but none's home at the moment) I'm learning a new language really, all these DHEA's TSH' and codes but I'll catch up, eventually. Your muscle pain sounds so familiar. I've been there with the Pee bucket too, needs must. My main problem with muscles is through the night. It's like being put in one of these VacPacs and having the life sucked out. I wouldn't mind if it meant I was a third of my original size but no luck there. I was at the Doctors 2 days ago but didn't get very far as " one thing at a time, please " . Six months ago I had an upperGi endoscopy which `disturbed' the muscle at the top of the stomach. I've also had a change in symptom asI've been waking through the night with what feels like a rush of adrenelin, as though I've just had a huge fright, and tingly fluttering in the throat (interesting about the antibody attack, will look into that). Unfortunately this is enough to send this muscle into spasm and that's escruciating. I thought the rush might have been related to the thyroid but she says she would do nothing with the thyroid at the moment as that would exacerbate these symptoms. More tablets to take,propranolol and an antispasmodic drug. I'm reluctant to take more mucky stuff but did take one propranolol yesterday lunch. It may be co-incidence but I had the best night sleep. I got up to the loo in the middle of the night and walked like a normal person, no pain. My throats been `fluttering' pretty much all the time but that's almost do-able. The thyroid pack arrived today, thank you for that. I will go through this and the website and try and make better sense of what's happening at the moment. My Doctor is female and hypothyroid but I can only think that she is the one person that gets on fine with thyroxin. I'm a fairly assertive person but just haven't really known what to insist about but your files will give me the much needed ammunition. I know she had referred one of her patients with a similar set of tests to me and was suitably chastised by the local endo man. She did the test on antibodies a couple of years ago as her gut feeling has always been to test me for thyroid everytime I have visited her. I thought that antibodies was just a `present or not' thing but will ask what the count is for that. I've been on Ferrous Sulphate for about 9 months which has brought my serum Ferritin up to 29 Ng/ml. That was what the cameras were doing, checking for leaks etc. I'm not leaking, though I do feel they have left the camera down there. B12 has been missed so I'll ask that to be added. I live in Dunfermline, Fife but can travel easily to Edinburgh, Glasgow, Dundee, Perth it's no problem. I'm happy to go private but thought that had to still be routed through your GP. My Fibrofog or whatever it is is shocking at the moment and I'm at that stage of getting to the bottom of the page and realising that I haven't actually read anything though my eyes have been going through the motion so it will take a while to `absorb'. Hope this makes sense. Tanks again Irene > > HI Irene > Where in the UK do you live. Let us know and we will see if we know of a good doctor (who knows thyroid) in your area. > > I'm not sure what is happening anymore about the EDM - there were a few MP's who signed it and then it came to a stand-still. I was told that the MP's had been approached to say that whatever they signed, the BTA were NOT going to change their diagnosing and treatment protocol, so they would be simply wasting their time. This came from an MP to his constituent, who passed it on to me. > > Meanwhile, read everything in our files, especially about the adrenal/thyroid connection - the candida albicans/thyroid connection, - the low ferritin/thyroid connection. There IS a lot of reading, but if you want to make yourself well, you must learn to understand every aspect of your thyroid and what's good and what's bad. There IS light at the end of the tunnel, as many members will tell you. > > Luv - Sheila > > > > > > > > Several members of my family are hypothyroid. None of them keeps > very well. I wrote to my MP last year to ask him to sign the Early > Day Motion. I've chased him up for a response and won't let it lie. > In the meantime, is there a list of sympathetic endocrinologists or > someone that I can see to make sure I'm not barking up the wrong > tree, or just barking. I read that one of the things FMS sufferers > have in common is a contempt for the medical profession. 25 years > without help, pain is a powerful conditioner. I'll close now before > I overstay my welcome. > > Bless you all, I mean that with all my heart. Love Irene MacIntyre > > PS I do hope you can decipher my ramblings. > > > > > > > -------------------------------------------------------------------- ---------- > > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.5.516 / Virus Database: 269.20.4/1276 - Release Date: 13/02/2008 09:41 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2009 Report Share Posted June 26, 2009 Hello Delyth Can you let us know if you have been diagnosed as hypothyroid and what other thyroid function tests you have had done? Did they do a TSH, Free T4 as well as Free T3 and did they test your blood to see if you have antibodies to your thyroid? One little tip, whenever you post your thyroid function test results (or any other test results) always post the reference range for each of the individual tests too, because otherwise, we have no idea whether they are at the top, the middle, or the bottom of the reference range - and this does matter. Your blood test results are yours, and your doctor cannot withhold these from you. Tell us a little about your history and what drove you to finding information about thyroid disease from the Internet? Meanwhile, read everything you can on the forum - have a look at the information in our FILES and also read about hypothyroidism on our web site www.tpa-uk.org.uk Luv -0Sheila Just a note to say that Blood Test Results as follows : Free T3 - 4.5 pmol/l No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.364 / Virus Database: 270.12.90/2200 - Release Date: 06/26/09 05:53:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2009 Report Share Posted October 17, 2009 Hello - my name is Pamela. I requested to join your group for several reasons - I have multiple spinal issues and my husband had to retire early and go on SSD due to his lumbar spine injuries and 2 operations on his L4 and L5. I recently found out that I have cervical spinal stenosis and cervical myleopathy (25 years ago I had a fusion of C4-C7). Also have scoliosis, restless leg syndrome, osteoarthritis in hips and knees, plus lumbar disc degeneration. Last year I had an orthoscopy (sp?) on the right knee. I am also a breast cancer survivor, have ashma and epilepsy (under control.) At this time I have Meloxicam and Vicodin prescribed for the orthopedic conditions. This coming week I will have an MRI of the lumbar spine, begin PT, and have EMG of the lumbar spine. My neurosurgeon and pain mgmt. doctor are ordering these tests. Beyond that my 83 year old mother has bladder cancer. This week they are removing her bladder, as she cannot have either chemo. or radiation, so I am worried about her also. Looking forward to getting to know you folks. Pamela Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2011 Report Share Posted March 15, 2011 , If you're ever 3 hours northward, feel free to drop in and say " HI " . We live in Sidney, just north of the CO/NE border. BTW, if you want some great raw milk (I know you're not really into milk), there's a lady in Otis (off of Hwy 34) who got us started in goats. She has raw goat milk (labeled " For Pet Use Only " per CO law) and makes goat milk soaps (great stuff). If you're interested, I can get you her info. -- Matt On March 15, 2011 at 9:18 PM jessicastonetroy <jessijessibobessy@...> wrote: >  > > > Hi, my name is . I've been making milk kefir with grains for over a > year now, until my grains met with an unfortunate accident (roomie threw them > away). I'm interested in getting more, and trying water kefir, since I think > I'd drink that better. I'm not a huge milk fan. > Anyway, I found this group and was hoping I'd be able to find someone local I > might be able to trade or buy some kefir grains from. I have lots of kombucha > culture, and can work out a service trade. Or I can just pay. I live in the > Denver metro area, but am willing to drive. > In anycase, I look forward to getting to know all of you and learning from you > all! > > Stone > > > >  Quote Link to comment Share on other sites More sharing options...
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