Guest guest Posted October 21, 2003 Report Share Posted October 21, 2003 Good Morning everyone! I am new to the group as of yesterday. I accidentally came across it doing more research on Lyme-an ungoing thing in my life since 1997. I have to leave for a Dr. appt. actually in appt. 20 min. to go & argue about getting my IV put back in for Rocephin (All please wish me luck!). I have been extremely ill on & off since 1997. I have what they tell me is " Chronic late neurological lyme disease " . I not only have the classic problems of joint pain, muscle pain, neck, headaches, severe migraines, but also, seizures, facial palsy, arrhythmia, tingling in the fingers, trouble w/balance, sweating, dizzy spells, trouble w/memory, no concentration, etc. etc. I have been hospitalized 3 times now for one week at a time. I have had every med. test I think on the planet. I have had IV Rocephin twice, I was re-infected with Lyme this past July & now my Dr. is saying that they can't do the IV again because it can damage my liver! He is wrong! I have done much research & even called the people who put the IV in the past two times & they told me that they do it numerous times on people with chronic lyme. I am out of work on disability. The orals no longer work. As a matter of fact, while being treated in Sept. my counts went up an additional 1.60-I am now at, I believe 4.35 for titers. Doctors just don't seem to get it. I take more meds then a pharmacy can hold. It's so nice to know, at times, that I'm not the only one. Though loved ones are very understanding, we all sometimes look fine on the outside & people don't quite understand what we go thru on the inside. Please feel free to respond. It's so great to have a place to chat with people & to hear what others are going thru. By the way.....I am a 39 year old woman. I live in a wooded area & I own animals. I am married with 2 teenage children. Gotta head to the Dr. hope to hear from you all. Take care. [ ] New to the Group Good Morning All, I am new the group and already feel at home. I am not sure exactly how long I have had lyme, but know it goes back to at least 2000. It may go back further, but I can't remember from on day to the next (pun intended). I remember having a " bullseye " rash in 2000, but dismissed it as a mosquito bite and forgot about it until this year. Since that time I have made many trips to the Doctor for more things than you can think of: back pain, knee pain, neck pain, shoulder pain, gout in my left big toe, knumb toes/feet that are hypersensitive to touch and temperature, muscle twithing/convulsions, tmj, trouble swallowing, headaches, weekness, chronic fatigue, memory loss, brain fog; the list goes on. The 2000 infection may have been the second time I was infected. I can remember many of these symptoms going back to the 90s or maybe even the 80s, but like I said my memory is very bad. My current journey started in January of 2003 when my back out for no apparent reason and was in to much pain that I couldn't walk. I was also suffering from all of the other classic symptoms. At this point I went on short term disability and was out of work for about 6 months. When my back did not respond to treatment, my Dr. started looking into other possiblilities and ordered blood tests. Everything came back negative for lyme. My Dr. is very lyme literate and diagnosed me with lyme despite the negative blood test. We needed the positive test to appease the insurance company so they would approve the IV anti-biotics. Finally a blood test came back with positive bands that the CDC uses for a positive. I made an appointment with an ID doctor and was started on IV rocephin that day. After 6 weeks of IV treatment, I started feeling better and went back to work. I was still having some symptoms, so my ID Dr. wanted me to continue the IV Rocephin, but the Insurance company denied it. Within a week or two, I was starting to get sick again and over labor day weekend things got worse than ever. By Sept 1st, I was so weak, I could not move. To make a long story short, I spent the next week in the hospital and have been on IV Rocephin, Flagyl and Zithromax ever since. I am also out of work again, indefinately. The insurance company I was with approved another 6 weeks of IV theropy. We found out in the beginning of October that my employer on a leave of abscence with no pay or no benefits, so my health insurance was cancelled. My insurance cancellation has turned out to be a good thing, because my wife started insurance with her employer, who has to clause for pre-existing conditions. I am starting another 6 weeks with no lapse in treatment. I am starting to respond to the rocephin and stringing together longer periods of " feeling better " I am not sure how long I will be on the rocephin, but my PC Dr. who has lyme disease and is very literate, is talking six months plus. Hopefully that will get rid of it, but I know that once it gets in your system for a long period of time it is harder to get rid of. Thanks for letting me babble. I tend to do alot of that these days. Bill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2003 Report Share Posted October 21, 2003 Find a Lyme Literate MD and look into HyperBaric Oxygen Therapy (HBOT), Rife and Far InfaRed Sauna (FIR). Rita [ ] New to the Group > > > Good Morning All, > > I am new the group and already feel at home. I am not sure exactly > how long I have had lyme, but know it goes back to at least 2000. > It may go back further, but I can't remember from on day to the next > (pun intended). I remember having a " bullseye " rash in 2000, but > dismissed it as a mosquito bite and forgot about it until this > year. Since that time I have made many trips to the Doctor for more > things than you can think of: back pain, knee pain, neck pain, > shoulder pain, gout in my left big toe, knumb toes/feet that are > hypersensitive to touch and temperature, muscle > twithing/convulsions, tmj, trouble swallowing, headaches, weekness, > chronic fatigue, memory loss, brain fog; the list goes on. The 2000 > infection may have been the second time I was infected. I can > remember many of these symptoms going back to the 90s or maybe even > the 80s, but like I said my memory is very bad. > > My current journey started in January of 2003 when my back out for > no apparent reason and was in to much pain that I couldn't walk. I > was also suffering from all of the other classic symptoms. At this > point I went on short term disability and was out of work for about > 6 months. When my back did not respond to treatment, my Dr. started > looking into other possiblilities and ordered blood tests. > Everything came back negative for lyme. My Dr. is very lyme > literate and diagnosed me with lyme despite the negative blood test. > We needed the positive test to appease the insurance company so they > would approve the IV anti-biotics. Finally a blood test came back > with positive bands that the CDC uses for a positive. I made an > appointment with an ID doctor and was started on IV rocephin that > day. After 6 weeks of IV treatment, I started feeling better and > went back to work. I was still having some symptoms, so my ID Dr. > wanted me to continue the IV Rocephin, but the Insurance company > denied it. Within a week or two, I was starting to get sick again > and over labor day weekend things got worse than ever. By Sept 1st, > I was so weak, I could not move. To make a long story short, I > spent the next week in the hospital and have been on IV Rocephin, > Flagyl and Zithromax ever since. I am also out of work again, > indefinately. The insurance company I was with approved another 6 > weeks of IV theropy. We found out in the beginning of October that > my employer on a leave of abscence with no pay or no benefits, so my > health insurance was cancelled. My insurance cancellation has > turned out to be a good thing, because my wife started insurance > with her employer, who has to clause for pre-existing conditions. I > am starting another 6 weeks with no lapse in treatment. > > I am starting to respond to the rocephin and stringing together > longer periods of " feeling better " I am not sure how long I will be > on the rocephin, but my PC Dr. who has lyme disease and is very > literate, is talking six months plus. Hopefully that will get rid > of it, but I know that once it gets in your system for a long period > of time it is harder to get rid of. > > Thanks for letting me babble. I tend to do alot of that these days. > > Bill > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2003 Report Share Posted October 30, 2003 in 1979-83 i didn't have any seizures then,i got runover by a drunk person then they started coming back except they were worse and earlier this year i had 605 seizures in 3 1/2 months time i've never had so many in my life in suck a small period of time.now i take sunrider chinese herbal foods and i've gone nearly 5 months without a seizure and my seizures lasted as long as 39 minutes now the left side of my brain is pressed into the right side and if i have anymore like that the dr. said i'd be dead in no time.so my friend got me on sunrider and i've been seizure free for like i say nearly 5 months. Doug Wallace <lovetrees@...> wrote:I am a 35 yr old female. Seizures since 15 yrs...1 when 4. no doc knows why! They scare me pretty bad! i mostly have grand mals....always trying to make them " go away " i hate facing this issue!! They have left for 4 years and recently come back full force. I hate them!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2003 Report Share Posted October 30, 2003 if you would like a cd that explains the product i'll send you one just e-mail me your home address and i'll send you one. THANK YOU,MARK HOGUE Doug Wallace <lovetrees@...> wrote:I am a 35 yr old female. Seizures since 15 yrs...1 when 4. no doc knows why! They scare me pretty bad! i mostly have grand mals....always trying to make them " go away " i hate facing this issue!! They have left for 4 years and recently come back full force. I hate them!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2003 Report Share Posted October 30, 2003 On Wed, 29 Oct 2003 17:57:21 -0500 " Doug Wallace " <lovetrees@...> writes: > I am a 35 yr old female. Seizures since 15 yrs...1 when 4. no doc > knows why! They scare me pretty bad! i mostly have grand > mals....always trying to make them " go away " i hate facing this > issue!! They have left for 4 years and recently come back full > force. I hate them!!! I know what you mean. My daughter has absence and grand mal seizures and I hate them too. I know that it's got to be hard to think that they are gone and to then get them back again. I'm really sorry that you're having to go through this. I will say a special prayer for you! God Bless You! Grace > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2003 Report Share Posted October 30, 2003 send me your personal e_mail and yes i would like the CD!!! When you send your E-mail send it to Lovetrees@.... I will then give you my mailing address. I really appreciate this! Re: [ ] new to the group if you would like a cd that explains the product i'll send you one just e-mail me your home address and i'll send you one. THANK YOU,MARK HOGUE Doug Wallace <lovetrees@...> wrote:I am a 35 yr old female. Seizures since 15 yrs...1 when 4. no doc knows why! They scare me pretty bad! i mostly have grand mals....always trying to make them " go away " i hate facing this issue!! They have left for 4 years and recently come back full force. I hate them!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2003 Report Share Posted October 30, 2003 thank you! Re: [ ] new to the group On Wed, 29 Oct 2003 17:57:21 -0500 " Doug Wallace " <lovetrees@...> writes: > I am a 35 yr old female. Seizures since 15 yrs...1 when 4. no doc > knows why! They scare me pretty bad! i mostly have grand > mals....always trying to make them " go away " i hate facing this > issue!! They have left for 4 years and recently come back full > force. I hate them!!! I know what you mean. My daughter has absence and grand mal seizures and I hate them too. I know that it's got to be hard to think that they are gone and to then get them back again. I'm really sorry that you're having to go through this. I will say a special prayer for you! God Bless You! Grace > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2003 Report Share Posted November 23, 2003 Hi , welcome to the group! Probably not very many people here from CO, but lots of nice people anyway! The listers here are from as far away as the ines (Hi, Eben, you've been quiet lately!). Marilyn in IL new to the group hi all i just found out i have hep-c probably from doing drug many years ago... anyone from aurora colorado ??? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2003 Report Share Posted November 24, 2003 Welcome , Joiin the club. I was dx in 98. Probably had it for 30 yrs. Went thru tx in 2001 with good results, but it's back now. I just try to live a healthy life to keep the dragon at bay. Good luck. rc > hi all > > i just found out i have hep-c probably from doing drug many years > ago... anyone from aurora colorado ??? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2003 Report Share Posted November 24, 2003 shoot! I think 99% of heppers are in Colorado! here is a link where they all are. I can't find any from Texas http://www.hepc-connection.org/ new to the group hi all i just found out i have hep-c probably from doing drug many years ago... anyone from aurora colorado ??? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2003 Report Share Posted November 24, 2003 We live in Aurora and we met yesterday Hi ! - Kerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2003 Report Share Posted November 24, 2003 Hi. I got hep c probably the same way. I know we have a Coloradan in the crowd. I lived in Aurora for a couple of years. I lived on Hanover St. In Denver area from 82-90. I'm in Green Bay Wisconsin now. Welcome, you've found a good group of caring people and were here to help you in any way we can. Look forward to hearing more from you. -dz- <catz4evr@...> wrote: hii just found out that i have hep-c probably from doing drugs many yrs ago. anyone here from aurora colorado ? ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2003 Report Share Posted November 24, 2003 i'm from estes park, co. there are several of us from colorado <<<<<<<<<<<<<<<<<*>>>>>>>>>>>>>>> 0 Tobi Hale, MSW & Sapphie, SDIT l_ (/)_. It ain't my revolution if it ain't accessible! WWJB: Who Would Jesus Bomb? new to the group > hi all > > i just found out i have hep-c probably from doing drug many years > ago... anyone from aurora colorado ??? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2003 Report Share Posted November 24, 2003 Since we are on the topic of geographical locations....Is there anyone that lives in San Francisco Bay Area on this group? Vickie -- Re: [ ] new to the group Hi. I got hep c probably the same way. I know we have a Coloradan in the crowd. I lived in Aurora for a couple of years. I lived on Hanover St. In Denver area from 82-90. I'm in Green Bay Wisconsin now. Welcome, you've found a good group of caring people and were here to help you in any way we can. Look forward to hearing more from you. -dz- <catz4evr@...> wrote: hii just found out that i have hep-c probably from doing drugs many yrs ago. anyone here from aurora colorado ? ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2003 Report Share Posted November 25, 2003 Hi, Vickie- I live and work in San Francisco and have been here since October of 1969 when I hitch-hiked out from Chicago. Lou [with his cats Bella and Sammy F.C.] > Since we are on the topic of geographical locations....Is there anyone that > lives in San Francisco Bay Area on this group? > > Vickie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2003 Report Share Posted November 26, 2003 Lou, I have lived in S.F. before. I was born there and then right after high school I moved there, but now I am in Walnut Creek. So I have lived in the area all my life. -- [ ] Re: new to the group Hi, Vickie-I live and work in San Francisco and have been here since October of 1969 when I hitch-hiked out from Chicago.Lou [with his cats Bella and Sammy F.C.]> Since we are on the topic of geographical locations....Is there anyone that> lives in San Francisco Bay Area on this group?> > Vickie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2003 Report Share Posted November 26, 2003 Vicki- I haven't been to Walnut Creek in years. When I first moved out here, Walnut Creek was a nice quiet little town. Back around 20-years ago that all changed as the area grew and WC started to develop problems associated with larger communities. Feel free to write me off list if you'd like. L > > Since we are on the topic of geographical locations....Is there > anyone that > > lives in San Francisco Bay Area on this group? > > > > Vickie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Dear New to the group, please share any info on helping with the pain. We try to pass on anything that might help someone else. Sincerely, Fran Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 check out warmmeups.com. I heard about this on a arthritis newsgroup and I ordered a pair. You warm them up in the microwave and they feel AWESOME on your hands. They do stay warm for a long time. I took them in and shared them with a co-worker today who has osteoarthritis and her hands hurt all the time. She said she was in love with them and she ordered two pairs. Next week they are coming out with ones for the feet and I will definetely order a few pairs. Thanks for letting me share. I know we all want the pain just to go away or finds way to help decrease it. ALison -- In , " Fran Mishler " <fran@m...> wrote: > Dear New to the group, please share any info on helping with the pain. We > try to pass on anything that might help someone else. Sincerely, Fran Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 check out warmmeups.com. I heard about this on a arthritis newsgroup and I ordered a pair. You warm them up in the microwave and they feel AWESOME on your hands. They do stay warm for a long time. I took them in and shared them with a co-worker today who has osteoarthritis and her hands hurt all the time. She said she was in love with them and she ordered two pairs. Next week they are coming out with ones for the feet and I will definetely order a few pairs. Thanks for letting me share. I know we all want the pain just to go away or finds way to help decrease it. ALison -- In , " Fran Mishler " <fran@m...> wrote: > Dear New to the group, please share any info on helping with the pain. We > try to pass on anything that might help someone else. Sincerely, Fran Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2004 Report Share Posted January 20, 2004 What makes you think you are suffering from delayed puberty? Do you have pubic hair? Facial/body hair? Has your voice deepened since your early teen years? Usually a bone maturation exam and blood tests will be able to reveal what and if there is a problem. Another thing, kind of personal but are your testicles fully developed? > HI..Im a 22 year old male and i still havent gone fully through > puberty yet.I was reccomended to this site by a member of webmd.I > want to know if any of you guys an give me advice on what i should > do.thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2004 Report Share Posted January 21, 2004 adding to what bigcolli mentioned.... try and give us as much info as you can have you had any injuries either to your head or testes? the dr you will want to see is an endocrinologist Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2004 Report Share Posted January 21, 2004 This is nothing to be ashamed about and it is something that you can fix. You will need a professinal M.D. to help you through this process. You should go to your family doctor or a walk in clinic if you don't have one, explain your situation and tell them you need to be referred to an endocrinologist that specializes in hormone therapy. Your problem is either primary or secondary hypogonadism. If it is primary, it might be a genetic disorder called kleinfelters (in the title of this group). You can get tested for this with a blood test. That is the first step in your journey towards health and manhood. Also, buy and read " The testosterone Syndrome " by Eugene Shippen, (can buy it from Amazon or order from your local book store), to understand how hormones work in your body, why they are important and why they don't do their job sometimes. This is a long journey, and there is not a quick fix. But with the right treatment, you will be the best you can be! Cheers, Armyguy > I just wanted to say hello to everyone. I'm new to the group from > over at webmd. I've been on Androgel off and on since March 03. I > just went back on it on the 16th. I'm looking for something I can > pick up at a nutrition store for estrogen blocking. Phil said zinc > over on webmd, but I've heard of something else, I think it started > with a C. If anyone knows what it might be, please let me know. Also > if there is any side effects of zinc I should be aware of, throw that > in too. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2004 Report Share Posted January 31, 2004 Hi Teneshia: Welcome! There are so many symptoms for hypo's and not every person gets the same ones. For me, the worst was foggy memory, not being able to concentrate, and weight. Everyone here is willing to share their insights and personal experiences with anyone who asks. I am relatively new to the hypo world, plus, like others, I also have Hashimoto's Thyroiditis. I have learned much from the postings here, I hope you do, too! It's your body. It's your life. Take control. Barb jafrasouth@... wrote: Hi, My name is Teneshia, I found this group from cure zone. I used to be acutely hyperthyroid (grave's disease). I had my thyroid gland ablated which I really regret for many reasons but I was told it was necessary. I have been hypo since 99 when I had it ablated. I have been taking 400 mcg of Levoxyl daily for 6 months now and it seems that I am never above a hypo level. I think being hypo so long has caused other health problems (which is why I regret having the ablation done). The worst of which is weight gain (100 pounds) and digestive issues. I am looking forward to learning alot with this group. Perhaps sharing too... Teneshia Norcross, GA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2004 Report Share Posted January 31, 2004 Hi, Tenshia,welcome! My name is Keisha. I just was recently dianosed with hypo in nov, and My doc put me on synthroid.. then a about two weeks ago he put me on cytomel as well. Since my meds I have noticed a little difference as far as energy and stuff but I still have my good and bad days, I feel much better since on cytomel.. I was always tired befoe, and I also gain alot of weight. Since I have been on my meds I have lost some weight, I went from size 24 to a size 18/20- I feel better - I am able to walk every day now- before I would be to tired to do so. R u losing any weight since you are on your meds? If so how much? Do you feel better since on meds? I hope you do feel better- We all know how it is here to have bad days too- I just recently notice my eye brows was getting thinner- my eye brows always was thin but I have noticed they are really thin on my ends and stuff- it bothers me- My hair seens to not be fallin out as much- I hope it is going to stop- My hair is thinner then before ( ofcourse) but I still have alot left- and I would like to keep itthat way--lol--Oh and girl my ( brain fog) is bad as well as others on this site- I get so forgetful, and I can think of something one minute and the next I would have forgotten what I was going to say- my hubby says I am going through all timers---at 26!! hehe- well welcome and I am sure this board willhelp you they sure have me alot-- take care- they are real good on quesitons you have also- keisha BARBARA SCHULZ <beschulz@...> wrote: Hi Teneshia: Welcome! There are so many symptoms for hypo's and not every person gets the same ones. For me, the worst was foggy memory, not being able to concentrate, and weight. Everyone here is willing to share their insights and personal experiences with anyone who asks. I am relatively new to the hypo world, plus, like others, I also have Hashimoto's Thyroiditis. I have learned much from the postings here, I hope you do, too! It's your body. It's your life. Take control. Barb jafrasouth@... wrote: Hi, My name is Teneshia, I found this group from cure zone. I used to be acutely hyperthyroid (grave's disease). I had my thyroid gland ablated which I really regret for many reasons but I was told it was necessary. I have been hypo since 99 when I had it ablated. I have been taking 400 mcg of Levoxyl daily for 6 months now and it seems that I am never above a hypo level. I think being hypo so long has caused other health problems (which is why I regret having the ablation done). The worst of which is weight gain (100 pounds) and digestive issues. I am looking forward to learning alot with this group. Perhaps sharing too... Teneshia Norcross, GA Quote Link to comment Share on other sites More sharing options...
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