Guest guest Posted December 4, 2001 Report Share Posted December 4, 2001 Su. We're here for you. Good Luck on Wednesday. You may be a little sore but it won't last long. Keep us informed. Ann [ ] New Diagnosis Hey guys! I have been reading your posts for the last couple of days. I wastold last Tuesday that I have AIH. I go in for my liver biopsy Wednesday. Ihave absolutely no idea as to what is ahead of me. I will continue to lookto you for support and info. Thanks for being there.Su in Kentucky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2001 Report Share Posted December 4, 2001 Su in Kentucky, Sorry to hear that you have been diagnosed with AIH. In any case, I am glad you found this group and welcome you here. Stick around, there are tons of information and support here. ~~~Joanna in WA state 8/01 > Hey guys! I have been reading your posts for the last couple of days. I was > told last Tuesday that I have AIH. I go in for my liver biopsy Wednesday. I > have absolutely no idea as to what is ahead of me. I will continue to look > to you for support and info. Thanks for being there. > Su in Kentucky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2003 Report Share Posted June 14, 2003 Dear , Your story sounds a lot like mine. I started with Plaquenil for connective tissue disease and then ended up with an AIH diagnosis later. I, too, had a terrible reaction to immuran so currently of those types of meds, I am down to 5 mg pred and 150 mg of plaquenil. I felt much better when I got the plaquenil, too. Welcome and ask anything! If we haven't already asked it, we probably wanted too! Take care, Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2003 Report Share Posted August 6, 2003 Sure have. has that. Go to www.spondylitis.org to get more info. It is kind of a blanket term for various arthritis' which affect tendons, spine, heels and more. That web site will give you lots of info. When Chris' dr talks about his diagnosis he uses spondylitis and spondyloarthropy interchangeably. Chris' diagnosis came from his having pain in his heels, feet, and pelvic rim and lower back. The dr should check your back for flexibility. When first started he could not touch his toes. Now he has no problems with that, due to meds and the physical exercises. He works out at a health club which has helped to keep him flexibile. Anyway, check out that website. Hope this helps, Michele (16,spondy & pauci) -----Original Message-----From: superstahlisa@... [mailto:superstahlisa@...] Sent: Tuesday, August 05, 2003 9:28 PM Subject: New diagnosisHello, ok I finally got the real name of what I was diagnosed with aside from the JRA. Spondyloarthropathy does anyone know what this actually is? I've never heard of it. And I'm quite curious. (Poly JRA- Spondy 18) To leave this mailing list, send request to: -unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2003 Report Share Posted August 6, 2003 Yeah the doctor checked it and said it was horrible. Actually her word was pathetic.. said in a nice way of course. She's an awesome doctor and will totally joke around with me, just to clerify that she wasn't being mean. But yeah I wasnt sure if it was something different. poly jra and spondy age 18 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2003 Report Share Posted August 7, 2003 I remeber when Chris' was pathetic. It did take time and still takes work. He is to the point where now the dr pounds on his back and it doesn't hurt. When it first presented even pressing firmly on his lower back would be painful. For the methotrexate worked the best. Sulfasalazine, which he started first, did nothing. I hope that soon you are able to move better. I find it amazing that the tendons can stiffen like that. I mean, I never realized before seeing this happen, that the tendons can get inflamed to the point people can't move. But having seen it with my own eyes, I feel so for people who have this. I hope your dr can figure out some relief for you. Michele (16, pauci & spondy) -----Original Message-----From: superstahlisa@... [mailto:superstahlisa@...] Sent: Wednesday, August 06, 2003 4:22 PM Subject: Re: New diagnosisYeah the doctor checked it and said it was horrible. Actually her word was pathetic.. said in a nice way of course. She's an awesome doctor and will totally joke around with me, just to clerify that she wasn't being mean. But yeah I wasnt sure if it was something different. poly jra and spondy age 18 To leave this mailing list, send request to: -unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2003 Report Share Posted August 18, 2003 Latressa maybe you could read my story, I also had cancer in my tongue/throath and the oncologists thought I was incurable, but with help of diet, extra vitamins, chemo, radiation , operation I'm still there and in excellent condition. octber 1997 was my last oparation. Since then I'm cancerfree. My story in english: www.kanker-actueel.nl/me_re_k_e.html Nowadays there are also operationtecnics with laser etc. so it might be worth to look around. Read last study in Scotland about PDT with chlorines instead of fotofrin with execellent results for head- and neckcancers. Bron: Medscape/Reuters Photodynamic Therapy With New Sensitizer Effective in Small Head-and-Neck Cancers NEW YORK (Reuters Health) Jul 31 - Photodynamic therapy (PDT) utilizing meta-tetra(hydroxyphenyl)chlorin (mTHPC) is a feasible alternative to surgery or radiotherapy in patients with early-stage squamous cell carcinoma of the oral cavity and oropharynx, a study suggests. Second-generation photosensitizers such as mTHPC (Foscan; Scotia Pharmaceuticals, Stirling, Scotland) are " more effective and less phototoxic to the skin than their forerunners, " Dr. Marcel P. Copper, and colleagues from the Netherlands Cancer Institute in Amsterdam note in the July issue of Archives of Otolaryngology - Head and Neck Surgery. They prospectively evaluated the long-term outcome of PDT using mTHPC in 25 patients with 29 T1-T2 NO tumors of the oral cavity and/or oropharynx. Follow-up lasted a mean of 37 months. In all patients, necrosis of the illuminated area occurred within 24 hours but subsided within 4 to 6 weeks after treatment. Complete remission of the primary tumor was achieved in 25 (89%) of 29 tumors. The complete remission rate was 95% for T1 tumors and 57% in T2 tumors. Surgery and/or radiotherapy effectively salvaged all four patients that developed recurrent local disease. Five patients who developed lymph node metastasis were treated by radical (modified) neck dissection and four underwent postoperative radiotherapy. None of the patients in the study experienced any long-term functional or cosmetic deficits. In comments to Reuters Health, Dr. Copper said: " The most important findings of this study are that mTHPC PDT gives excellent cure rates in small cancers of the mouth and pharynx, without the morbidity that is usual after treatment with conventional therapies like surgery and/or radiotherapy. " Arch Otolaryngol Head Neck Surg 2003;129:709-711. Gr. kees braam Webmaster www.kanker-actueel.nl new diagnosis > Hi all..... > > I have been on this list for about a month, lurking around because I wasn't > sure if my step-dad had cancer or not, but was wanting to be prepared just > in case. Tonight, he got a phone call from the doctor that did the biopsy > and it is cancerous in his mouth under his tongue. > > Can someone please let us know what they are doing to get cured of cancer? > I am thinking that a PURE diet is in order right?? What is it that he needs > to do, eat, etc? He is subbed to this list now, so any help would be > appreciated. His name is Les. Thank you so much! > > God bless you! > Latresa > *** God is my shepherd, I am His 'Lamb' *** > MY homepage: http://members.tripod.com/modgelodge/index.html > > > > > > Get HUGE info at http://www.cures for cancer.ws, and post your own links there. Unsubscribe by sending email to cures for cancer-unsubscribeegroups or by visiting http://www.bobhurt.com/subunsub.mv > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2003 Report Share Posted August 18, 2003 Latressa maybe you could read my story, I also had cancer in my tongue/throath and the oncologists thought I was incurable, but with help of diet, extra vitamins, chemo, radiation , operation I'm still there and in excellent condition. octber 1997 was my last oparation. Since then I'm cancerfree. My story in english: www.kanker-actueel.nl/me_re_k_e.html Nowadays there are also operationtecnics with laser etc. so it might be worth to look around. Read last study in Scotland about PDT with chlorines instead of fotofrin with execellent results for head- and neckcancers. Bron: Medscape/Reuters Photodynamic Therapy With New Sensitizer Effective in Small Head-and-Neck Cancers NEW YORK (Reuters Health) Jul 31 - Photodynamic therapy (PDT) utilizing meta-tetra(hydroxyphenyl)chlorin (mTHPC) is a feasible alternative to surgery or radiotherapy in patients with early-stage squamous cell carcinoma of the oral cavity and oropharynx, a study suggests. Second-generation photosensitizers such as mTHPC (Foscan; Scotia Pharmaceuticals, Stirling, Scotland) are " more effective and less phototoxic to the skin than their forerunners, " Dr. Marcel P. Copper, and colleagues from the Netherlands Cancer Institute in Amsterdam note in the July issue of Archives of Otolaryngology - Head and Neck Surgery. They prospectively evaluated the long-term outcome of PDT using mTHPC in 25 patients with 29 T1-T2 NO tumors of the oral cavity and/or oropharynx. Follow-up lasted a mean of 37 months. In all patients, necrosis of the illuminated area occurred within 24 hours but subsided within 4 to 6 weeks after treatment. Complete remission of the primary tumor was achieved in 25 (89%) of 29 tumors. The complete remission rate was 95% for T1 tumors and 57% in T2 tumors. Surgery and/or radiotherapy effectively salvaged all four patients that developed recurrent local disease. Five patients who developed lymph node metastasis were treated by radical (modified) neck dissection and four underwent postoperative radiotherapy. None of the patients in the study experienced any long-term functional or cosmetic deficits. In comments to Reuters Health, Dr. Copper said: " The most important findings of this study are that mTHPC PDT gives excellent cure rates in small cancers of the mouth and pharynx, without the morbidity that is usual after treatment with conventional therapies like surgery and/or radiotherapy. " Arch Otolaryngol Head Neck Surg 2003;129:709-711. Gr. kees braam Webmaster www.kanker-actueel.nl new diagnosis > Hi all..... > > I have been on this list for about a month, lurking around because I wasn't > sure if my step-dad had cancer or not, but was wanting to be prepared just > in case. Tonight, he got a phone call from the doctor that did the biopsy > and it is cancerous in his mouth under his tongue. > > Can someone please let us know what they are doing to get cured of cancer? > I am thinking that a PURE diet is in order right?? What is it that he needs > to do, eat, etc? He is subbed to this list now, so any help would be > appreciated. His name is Les. Thank you so much! > > God bless you! > Latresa > *** God is my shepherd, I am His 'Lamb' *** > MY homepage: http://members.tripod.com/modgelodge/index.html > > > > > > Get HUGE info at http://www.cures for cancer.ws, and post your own links there. Unsubscribe by sending email to cures for cancer-unsubscribeegroups or by visiting http://www.bobhurt.com/subunsub.mv > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2003 Report Share Posted August 18, 2003 Latresa, Les - there is no 'Cure' of cancer. We all have cancerous cells and only a healthy system can dump them. Read http://www.soilandhealth.org/02/0201hyglibcat/020103toxemia/020103toxemia.PDF Part of it is a sensible lifestyle, e.g. the Budwig diet (the whole diet, not just flax oil, seed and cottage cheese as antipasti,-), exercise and sunshine. Dr Budwig References: Dr Johanna Budwig diet http://home.online.no/~dusan/diseases/cancer/cancer_dr_budwig.html Budwig diet to treat cancer http://www.cancure.org/budwig_diet.htm Duke Univ. Boasts New Study (the URL is correct: " dukestudyignorsbudwigwork " ,-) http://educate-yourself.org/fc/dukestudyignorsbudwigwork15aug01.shtml Case reports http://www.beckwithfamily.com Budwig Flax Oil Diet http://www.positivehealth.com/permit/Articles/Nutrition/turner60.htm Getandstaywell Budwig http://www.getandstaywell.com/archive28.shtml Johanna Budwig's Flax Oil & Cottage Cheese Diet http://datadepo.com/cures for cancer/budwig.htm Johanna Budwig Revisited http://www.mnwelldir.org/docs/cancer1/budwig.htm What are Essential Fatty Acids? http://waltonfeed.com/omega/ess_fat.html Phytoestrogens, lignans http://ethesis.helsinki.fi/julkaisut/laa/kliin/vk/mazur/phytoest.pdf Goggle hits " Budwig AND cancer " : 1750 Books: Krebs, das Problem und die Loesung 3-932576-63-2 Flaxoil as a True Aid Against Arthritis, Heart Infarction, Cancer And Other Disease* 0-9695272-1-7 The Oil-Protein diet* 3-932576-64-0 *translated to English 75 publications Mailing list FlaxSeedOil2-subscribe Regards At 8:12 Uhr +0200 18.08.2003, Latresa wrote: >Hi all..... > >I have been on this list for about a month, lurking around because I wasn't >sure if my step-dad had cancer or not, but was wanting to be prepared just >in case. Tonight, he got a phone call from the doctor that did the biopsy >and it is cancerous in his mouth under his tongue. > >Can someone please let us know what they are doing to get cured of cancer? >I am thinking that a PURE diet is in order right?? What is it that he needs >to do, eat, etc? He is subbed to this list now, so any help would be >appreciated. His name is Les. Thank you so much! > >God bless you! >Latresa >*** God is my shepherd, I am His 'Lamb' *** >MY homepage: http://members.tripod.com/modgelodge/index.html > > > > > >Get HUGE info at http://www.cures for cancer.ws, and post your own links there. >Unsubscribe by sending email to cures for cancer-unsubscribeegroups or by >visiting http://www.bobhurt.com/subunsub.mv > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2003 Report Share Posted August 18, 2003 Latresa, Les - there is no 'Cure' of cancer. We all have cancerous cells and only a healthy system can dump them. Read http://www.soilandhealth.org/02/0201hyglibcat/020103toxemia/020103toxemia.PDF Part of it is a sensible lifestyle, e.g. the Budwig diet (the whole diet, not just flax oil, seed and cottage cheese as antipasti,-), exercise and sunshine. Dr Budwig References: Dr Johanna Budwig diet http://home.online.no/~dusan/diseases/cancer/cancer_dr_budwig.html Budwig diet to treat cancer http://www.cancure.org/budwig_diet.htm Duke Univ. Boasts New Study (the URL is correct: " dukestudyignorsbudwigwork " ,-) http://educate-yourself.org/fc/dukestudyignorsbudwigwork15aug01.shtml Case reports http://www.beckwithfamily.com Budwig Flax Oil Diet http://www.positivehealth.com/permit/Articles/Nutrition/turner60.htm Getandstaywell Budwig http://www.getandstaywell.com/archive28.shtml Johanna Budwig's Flax Oil & Cottage Cheese Diet http://datadepo.com/cures for cancer/budwig.htm Johanna Budwig Revisited http://www.mnwelldir.org/docs/cancer1/budwig.htm What are Essential Fatty Acids? http://waltonfeed.com/omega/ess_fat.html Phytoestrogens, lignans http://ethesis.helsinki.fi/julkaisut/laa/kliin/vk/mazur/phytoest.pdf Goggle hits " Budwig AND cancer " : 1750 Books: Krebs, das Problem und die Loesung 3-932576-63-2 Flaxoil as a True Aid Against Arthritis, Heart Infarction, Cancer And Other Disease* 0-9695272-1-7 The Oil-Protein diet* 3-932576-64-0 *translated to English 75 publications Mailing list FlaxSeedOil2-subscribe Regards At 8:12 Uhr +0200 18.08.2003, Latresa wrote: >Hi all..... > >I have been on this list for about a month, lurking around because I wasn't >sure if my step-dad had cancer or not, but was wanting to be prepared just >in case. Tonight, he got a phone call from the doctor that did the biopsy >and it is cancerous in his mouth under his tongue. > >Can someone please let us know what they are doing to get cured of cancer? >I am thinking that a PURE diet is in order right?? What is it that he needs >to do, eat, etc? He is subbed to this list now, so any help would be >appreciated. His name is Les. Thank you so much! > >God bless you! >Latresa >*** God is my shepherd, I am His 'Lamb' *** >MY homepage: http://members.tripod.com/modgelodge/index.html > > > > > >Get HUGE info at http://www.cures for cancer.ws, and post your own links there. >Unsubscribe by sending email to cures for cancer-unsubscribeegroups or by >visiting http://www.bobhurt.com/subunsub.mv > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 Hello Lori, Wow, it does seem early to hear the words "transplant." You definetly need a second opinion from a knowledgable hem/onc, and if you can get to consortium doctor that is a plus. Let me just say, I was dx at age 43 in 1993 and have had platelets under 100,000 for at least seven years. They have been between 65,000-75,000 for four years now. The only other thing to point to is a slightly enlarged spleen, for about two years now. My WBC is still around 15,000 and has been all of this time; no nodes enlarged. Technically this is considered Stage 4 and treatment is often suggested for Stage 4. I will not wait too long, and my doctor is very attentive to me and will start treatment the moment something moves for the worse. In MY experience, waiting has been a good thing. The treatments have improved a lot in 10 years, and they may improve more in the next year or two before I feel I should start treatment. There are many other people in my shoes who are deciding to wait for a while. Of course, there are some CLLers who should not wait, and the characteristics of their CLL are more aggressive and further along than mine. You definetly should get more information. Are you close to Dana Farber, you can be assured of a good assessment there and they will not suggest a bone marrow transplant unless that is the only treatment that could help, and usually hem/oncs try less agressive treatment first if they can. Your doctor is suggesting fludarabine, cytoxan and rituxan, and this is considered a state-of-the-art therapy and found to help people achieve complete and partial remissions (studied a lot at MD ). This is a perfectly fine suggestion if the time is right and the qualities of 's CLL fit. Good luck, find out more, and keep us posted. Goodwin new diagnosis Hello: I have written the list a couple of times, and monitor it everyday. My husband, , age 45 was recently diagnosed with CLL. He had a BMB. (I must admit I am still very ignorant regarding the terminology used here on the list...not nearly as knowledgeable as many here). From monitoring what you all share, I feel that 's oncologist is not going to share with us anything we don't have enough knowledge to ask about. His appt after the BMB was rushed and vague, but he did say that 's platelets were 100,000 and that was at the point he would suggest chemo. He is rechecking his counts next month and a decision will go from there. The type of chemo mentioned was three letters but I don't remember them. He also suggested that he refer to Dana Farber for bone marrow transplant as they do not offer such treatment. Wouldn't that suggest he must have seen something on the biopsy indicating aggressive disease....why, otherwise, suggest getting in line for a transplant this early in the game? And, should he be able to tell us a stage 's disease is at from the biopsy? I know my questions are probably so "kindergarten" in a "University" setting, but am feeling overwhelmed. We live in such a rural area there are no other choices for cancer care centers than the one we are attending. But...I sure felt the doctor was trying to rush the appt and get out of answering our questions. Thanks for any answers, suggestions. Lori ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.538 / Virus Database: 333 - Release Date: 11/10/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2004 Report Share Posted January 11, 2004 Hi Lori, I would suggest that you get all the info you can, CBC, the last couple of them if there are more than one, the results of the BMB and any other info you were told, get copies immediately and report it here. Then many of the patients out there that have been through this can give you their understanding here on the site or can e-mail you privately and tell you what has happened with them and what they think. They can't tell you what to do, but they can sure give you some understanding about it all. Unfortunately it cold be a situation of an eager doctor who doesn't have that much experience with CLL just going with whatever sounds good to him at the moment or what worked the last time he had a patient. Unfortunately thats often the case. Especially his rushed meetings with you and lack of information is very scary. You need to have "All the information and a good amount of time to digest it and inquire about it and talk about it Before you make any decisions"! If your husband is not anemic and his platelets are around 100 and he has no infections or fevers and seems in general to be Ok, then you have time to think, investigate and decide without being in any extreme rush. Many doctors and patients as well are too often in a hurry to do something, anything......often a mistake, like rushing off a cliff. Get all the info, then get a lot of opinions from knowlegable people, doctors who specialize in CLL and then make up your mind. It's also very important to have someone who is easy to talk to and is free with giving information and who understands that 'you' are going to make all the decisions, after, you have made up your mind. Good luck, Kurt new diagnosis Hello: I have written the list a couple of times, and monitor it everyday. My husband, , age 45 was recently diagnosed with CLL. He had a BMB. (I must admit I am still very ignorant regarding the terminology used here on the list...not nearly as knowledgeable as many here). From monitoring what you all share, I feel that 's oncologist is not going to share with us anything we don't have enough knowledge to ask about. His appt after the BMB was rushed and vague, but he did say that 's platelets were 100,000 and that was at the point he would suggest chemo. He is rechecking his counts next month and a decision will go from there. The type of chemo mentioned was three letters but I don't remember them. He also suggested that he refer to Dana Farber for bone marrow transplant as they do not offer such treatment. Wouldn't that suggest he must have seen something on the biopsy indicating aggressive disease....why, otherwise, suggest getting in line for a transplant this early in the game? And, should he be able to tell us a stage 's disease is at from the biopsy? I know my questions are probably so "kindergarten" in a "University" setting, but am feeling overwhelmed. We live in such a rural area there are no other choices for cancer care centers than the one we are attending. But...I sure felt the doctor was trying to rush the appt and get out of answering our questions. Thanks for any answers, suggestions. Lori ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.538 / Virus Database: 333 - Release Date: 11/10/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 Lori, I also live in a rural area: eleven miles outside of a town of 200, nearest city of any size is about three hours away. You CAN find a better place, if only for a second opinion and, in my opinion, you should. There are pros and cons for waiting or acting aggressively, and a doctor experienced with CLL and what's available today is in a better position to advise you. And you need a doctor you trust and can feel comfortable with; one who is vague and rushed may not be your best choice. All that being said, CLL is not an immediate death sentence (the single greatest cause of death is birth, not what happens later); so relax, learn as much as you can or need to, and live your life to the fullest. You may be run over by a truck tomorrow, or you may have another 50 years together. Live so that whatever happens, and when, you can look back on your life without regrets. Good luck, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 Lori - 100,000 platelets are not a catastrophe. What are his other blood counts, could you tell us? Dana Farber is great for transplants, if that is indeed the option chosen. But you might go to Dana Farber (where do you live?) for a good second opinion. it's s top cancer center. Transplants are sometimes useful. People with CLL are not the most successful with transplants, although it's definitely an option. 45 is a good age for a transplant. There are two kinds: Allogeneic, where they match you up with a sibling or a donor, and autologous, where they take our your own cells, clean them up, and then put them back. (I'm simplifying a little here). You have to weight these alternatives very carefully. But without really expert opinion, you cannot say whether treatment of transplant is the better option. Another transplant expert is Dr. Craig Moskowitz at Sloan Kettering in New York. The three letters you are looking for are probably FCR, fludarabine+cytoxan+rituxan. This is a very common treatment these days, but, lets face it, it is chemo, wioth all the unpleasantness that this implies. The treatment was initiated by MD Cancer Center in Houston, they are very big on it and have had good results. Bottom line, you really need to get one (or two) good inputs re your husbands case. There are two many good choices out there. Lots of Luck, Balan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2004 Report Share Posted June 24, 2004 Marta, Hang in there! You need to get the second opinion. You have had a real hard time and I definitely understand the frustration. Not to mention that is why we are here, to let it out. I also understand how the other doctors have treated you. Through my 20's I must have seen 6 diferent doctors and none would believe me. On the results of a hearing test in my medical records is a big ? across the page. Don't let them get to you. See the other doctor and keep us posted. Lots of luck and I hope for the best. Bitsyeverybodyonthetruck <everybodyonthetruck@...> wrote: I was told yesterday by my ear Dr that I have a Cholesteatoma,I am very upset about this.I had a tube in my ear that had been there for 8 years and it got infected in Sept. 2002. Since then I have had 5 ear surgeries in the past 18 months to repair the damage.I have had tube placements and an ear drum replacement twice. The last replacement was in July 2003. I got a massive staph infection in the wound. I needed surgery to debride the wound and partially close it. I had 2 months of IV antibiotics and another surgery to finish closing the wound behind my ear. Back in December of 2003 I had just come off of antibiotics when I started to have nasty drainage from the ear. I was having muscle spasms in my jaw and my ear Dr felt like the infection had spread to the jaw joint on that side. I had another month of IV antibiotics and the infection seemed to stop. I have had clear drainage from my ear since then, my ear Dr felt it was fluid from the jaw joint. I still have a hole in my ear canal with "Debris" sticking out of it. The ear Dr tried to remove the debris yesterday with a suction and biopsy forceps but no go.My ear Dr does not feel like he has the ability to fix the problem so I am scheduled to see a top notch Otologist in my area next week.What am I looking at in terms of surgery? will it need to be done ASAP or is it something that I can put off until later in the year?I really feel like I am at the end of my rope as far as dealing with my ear. I have had multiple Dr's treat me in the last almost 2 years and I am wary of them to say the least. The funny thing is that I am a Registered Nurse and I should be able to deal with this easily but I feel like giving up.Has anyone had problems like this? I ran a temp of 100 plus every day for 9 months from the infection. I had Dr's tell me that it was impossible for me to have a fever for that long a period and that I must be making it up. I had more than a few Dr's suggest that I consult a Psychiatrist.I appologize for the length of this post but I am terribly frustrated right now.Thank you for any info you can give me!Marta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2004 Report Share Posted June 24, 2004 Actually Bitsy this will be a third opinion. I trust the ear Dr I have right now but he doesn't feel comfortable doing anything to fix it. I am going to go back and see an ear Dr I had years ago. He is a great Dr but I wasn't able to see him before this because of my insurance network. Isn't managed care terrific? Thanks for your input Bitsy Marta > I was told yesterday by my ear Dr that I have a Cholesteatoma,I am > very upset about this. > I had a tube in my ear that had been there for 8 years and it got > infected in Sept. 2002. Since then I have had 5 ear surgeries in the > past 18 months to repair the damage. > I have had tube placements and an ear drum replacement twice. The > last replacement was in July 2003. I got a massive staph infection in > the wound. I needed surgery to debride the wound and partially close > it. I had 2 months of IV antibiotics and another surgery to finish > closing the wound behind my ear. Back in December of 2003 I had just > come off of antibiotics when I started to have nasty drainage from > the ear. I was having muscle spasms in my jaw and my ear Dr felt like > the infection had spread to the jaw joint on that side. I had another > month of IV antibiotics and the infection seemed to stop. I have had > clear drainage from my ear since then, my ear Dr felt it was fluid > from the jaw joint. I still have a hole in my ear canal with " Debris " > sticking out of it. The ear Dr tried to remove the debris yesterday > with a suction and biopsy forceps but no go. > My ear Dr does not feel like he has the ability to fix the problem so > I am scheduled to see a top notch Otologist in my area next week. > > What am I looking at in terms of surgery? will it need to be done > ASAP or is it something that I can put off until later in the year? > > I really feel like I am at the end of my rope as far as dealing with > my ear. I have had multiple Dr's treat me in the last almost 2 years > and I am wary of them to say the least. The funny thing is that I am > a Registered Nurse and I should be able to deal with this easily but > I feel like giving up. > > Has anyone had problems like this? I ran a temp of 100 plus every day > for 9 months from the infection. I had Dr's tell me that it was > impossible for me to have a fever for that long a period and that I > must be making it up. I had more than a few Dr's suggest that I > consult a Psychiatrist. > I appologize for the length of this post but I am terribly frustrated > right now. > > Thank you for any info you can give me! > Marta > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 August, You wrote: > I recently had blood tests done and the results showed that my TSH level was 8.6. >Is that considered high? ... Yes. > ... My doctor wants me to start taking synthroid but I'm not sure if it's necessary. ... He's right. You need to replace the missing thyroid hormones. Now. Synthroid or its generic equivalent has been a popular choice, effective for many, including myself. Others on this list will advocate for alternatives. I suggest you study the complex feedback functions of T4, T3, and TSH to better understand what these recommendations mean. There are good sources of this information on the web or in our archives. These will also explain why your doctor will only gradually increase your dose, and that it could be a couple of months before you are back to normal. Depending on how long you have been hypothyroid, other systems may be impaired, and it could take awhile for these to recover. > ... What is considered to be a normal range for TSH? That depends on the laboratory reagents, but the usual report is around 0.5 to 5.0 . More recent recommendations are that it should be 0.3 to 3.0 regardless of the reagent recommendations. However, there are a lot of folks on this list who did not get relief from symptoms until they were at or below the lower end of this range, or by using alternative thyroid medications. Most doctors are reluctant to dose you to that range, because of the dangers of chronic hyperthyroidism. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 A high number means you are Hypo, not Hyper. I was confused when I first seen my results too. This is what your body puts out more of to try and compensate for what you are not getting when you have a low thyroid. Maybe someone else can explain it more technically then I can! LOL Kathy new diagnosis Hi , I recently had blood tests done and the results showed that my TSH level was 8.6. Is that considered high? My doctor wants me to start taking synthroid but I'm not sure if it's necessary. What is considered to be a normal range for TSH? August --------------------------------- Post your free ad now! Canada Personals Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Hi August, 8.6 is pretty high.....my doc says 2 or 3 is the normal range. My first TSH test was 21, and I thought I'd die....my second was 8..... I was feeling a little better by then, but not quite right. Since he upped my dosage I am feeling much better....I go back this month to be retested. Cheryl august benson <august4250@...> wrote: Hi , I recently had blood tests done and the results showed that my TSH level was 8.6. Is that considered high? My doctor wants me to start taking synthroid but I'm not sure if it's necessary. What is considered to be a normal range for TSH? August --------------------------------- Post your free ad now! Canada Personals Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 HUH? It's real easy to know if you are taking too much meds, believe me. We don't even have to test for it. Gracia Most doctors are reluctant to dose you to that > range, because of the dangers of chronic hyperthyroidism. > > Chuck > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2005 Report Share Posted January 3, 2005 as always . . . -- Ken West Check the library . . . samters/links > From: " teachryno " <teachryno@...> > Reply-samters > Date: Mon, 03 Jan 2005 01:40:41 -0000 > samters > Subject: new diagnosis > > > > I have just been diagnosed but have had the symptoms for many years, > started with asthma about 20 years ago getting worse every year, then > the urticaria (hives) started 5 years ago and have just been examined > by my ENT after 6 months of continual nasal stuffiness and have > numerous large polyps. I'm having a CAT scan in the am, allergy > testing again (last time was 24 years ago)later in the morning and > surgery in 3 weeks, currently on steriods. This was such a surprise > and I never suspected anything like this, I'm not as familiar with > the asprin sensitivity but drink lots of tea and eat almonds > frequently. Any really good web sites for more info? > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2006 Report Share Posted November 18, 2006 Hi! I had the same things...however, I don't know much about the sed rate! From my experience, NO, the synthoid did not help me. But, I could be the exception. As for losing weight, I found that cleansing the liver and colon were very beneficial to me. Look at www.modernmanna.com or www.ariseandshine.com I personally did both, but I like the arise and shine a little better. However, they are both great programs. This is a great support group, and you will get a lot of different perspectives, which is really key to finding the truth! Blessings! sesimplyme <sesimplyme@...> wrote: I was just diagnosed with a hypothyroid just over five weeks ago. I was having a lot of arthritis type pain when I went in to see my doctor. I have been having a lot of medical problems for the last few years with no diagnosis. Approximately ten years ago my goiter blew up overnight and I looked like a bullfrog. Even though I went to see a doctor, I was never diagnosed with a thyroid illness. It was about this time I lost the ability to lose weight and gradually started gaining. I am about 40- 50 lbs overweight now, even though I eat very little and my husband and I eat healthy, low fat meals. I have also exercised a lot and regularly in the past. Before being diagnosed I had regular stomach problems alternating between loose stools and constipation. My legs get so itchy they drive me crazy. The Levothyroid (generic Synthroid)that I am on now seems to help with this. For the past few years my blood work has shown a high sed rate. I dont know if that is related or not. The Dr's have never found a source for it. I would just like to hear from others who can tell me if my symptoms are typical of a hypothyroid and your own experiences. Also, an idea of what I can expect. Has anyone had luck with weight loss while on Synthroid? I have a lot of questions, especially about diet. Thanks and I'm sorry for the wordiness... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2006 Report Share Posted November 18, 2006 dear sesimplyme. We all understand how many 'words' it takes to describe the hell we've all been through! You will find many here that understand what you are going through. I too have been through similar issues for over 11 years now. Finally was dx'd with hypo-T, put on Synthroid, then Levoxyl. During those 3+ years, my symptoms all grew worse, had to quit work, became very depressed -- then all the docs that I saw simply focused on my depression and pain, (symptoms of untreated hypo-T) -- instead of running the proper test! Some percentage of folks DO NOT response to synthetic hormones for Hypo_T. You will find a wealth of information from this group and the daily postings. Your best bet is to locate a doctor that will treat you outside the box -- or with un-traditional methods. Your digestive problems sound like me -- (and after battling this for years, I have discovered it is Candida yeast. There are many great books & websites out there on this subject! Once again -- this is something that typically MDs often don't address. Will share more later, gg in KY -- who has been on Armour for 5 days now and this crazy Esptein Barr virus is getting me down! Before being diagnosed I had regular stomach problems alternating between loose stools and constipation. My legs get so itchy they drive me crazy. The Levothyroid (generic Synthroid)that I am on now seems to help with this. For the past few years my blood work has shown a high sed rate. I dont know if that is related or not. The Dr's have never found a source for it. I would just like to hear from others who can tell me if my symptoms are typical of a hypothyroid and your own experiences. Also, an idea of what I can expect. Has anyone had luck with weight loss while on Synthroid? I have a lot of questions, especially about diet. Thanks and I'm sorry for the wordiness... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2006 Report Share Posted November 19, 2006 gg, What dose of T4 were you on when you concluded that it was ineffective? Chuck You wrote: > > > dear sesimplyme. We all understand how many 'words' it takes to describe > the hell we've all been through! You will find many here that understand > what you are going through. I too have been through similar issues for > over 11 years now. Finally was dx'd with hypo-T, put on Synthroid, then > Levoxyl. During those 3+ years, my symptoms all grew worse, had to quit > work, became very depressed -- then all the docs that I saw simply > focused on my depression and pain, (symptoms of untreated hypo-T) -- > instead of running the proper test! Some percentage of folks DO NOT > response to synthetic hormones for Hypo_T. You will find a wealth of > information from this group and the daily postings. Your best bet is to > locate a doctor that will treat you outside the box -- or with > un-traditional methods. Your digestive problems sound like me -- (and > after battling this for years, I have discovered it is Candida yeast. > There are many great books & websites out there on this subject! Once > again -- this is something that typically MDs often don't address. Will > share more later, gg in KY -- who has been on Armour for 5 days now and > this crazy Esptein Barr virus is getting me down! > > Before being diagnosed I had regular stomach problems alternating > between loose stools and constipation. My legs get so itchy they > drive me crazy. The Levothyroid (generic Synthroid)that I am on now > seems to help with this. For the past few years my blood work has > shown a high sed rate. I dont know if that is related or not. The > Dr's have never found a source for it. > > I would just like to hear from others who can tell me if my symptoms > are typical of a hypothyroid and your own experiences. Also, an idea > of what I can expect. Has anyone had luck with weight loss while on > Synthroid? I have a lot of questions, especially about diet. > > Thanks and I'm sorry for the wordiness... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2006 Report Share Posted November 19, 2006 I was on only 50mcg of Synthroid for almost 3 years. In fact, I took in reports, copy of test from the Internet & books, etc., for a year before one of my MD's -- assistant finally tested me and put me on the T-4 drug. These past few years -- I have been seeing several doctors and none of them recognized my deteriorating symptoms of being that of Hypo-T, until I hit bottom in July-August '06. Finally doctor #7 " listen " , ran a complete thyroid panel -- which is when I discovered I had Hasti's! I've been taking Levoxyl, (100mcg) for over 3 months now and have had all sorts of health problems -- including mono! I'm now seeing a DO in another state -- attempting to restore some of the damage that has taken place in my immune system & have started Armour T. I wish I had found these great support groups several years ago -- instead of trusting docs that didn't have a clue as to what they where doing! gg Chuck wrote: gg, What dose of T4 were you on when you concluded that it was ineffective? Chuck You wrote: > > > dear sesimplyme. We all understand how many 'words' it takes to describe > the hell we've all been thro 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.