Guest guest Posted January 16, 2005 Report Share Posted January 16, 2005 > Any recommendations on how I should prepare for the first visit. Write out all your symptoms, what may make them worse, what may make them better, if there is any pattern at all to them. It may help to start a daily journal to track these. That is the first thing my LLMD had me start doing *-) Good Luck! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2005 Report Share Posted January 16, 2005 ...Listen to those who ventured before us. They warned me about my so-called " specialist " in October, and the folks on knew best. My " specialist " doesn't know how to treat Lyme - we have to use an LLMD. I've really realized this over the past 2 months, and it was definitely driven home by EVERYONE at the Lyme conference yesterday. The personal stories told by the 9+ Lyme patients who walked onstage to share their experience, strength, and hope yesterday was inspiring. I heard many in the audience blowing their nose and wiping their eyes - myself included. Some of the long-term Lyme patients were told by their non-LLMD " specialists " that after a course of abx, they would only be treated for their symptoms - no more abx. All of them have gone to an LLMD, and all of them are now leading good lives. I want my good life back. Something else I heard loud and clear yesterday was how Lyme can cause blindness - if we have certain vision problems, it's our responsibility to contact an optometrist. The vision in my left eye was fuzzy / hazy when I looked out of the side / bottom of my eye - this started around 7 weeks ago, and lasted for about 1 month. I thought it was a cataract, but I don't think a cataract will clear up on it's own. I'm contacting my optometrist first thing tomorrow morning. (I'm currently on a 6 month course of 400 mg. daily Doxycycline, from my soon-to-be EX-specialist, so that could have helped my eye - although, I think I heard that IV abx are required for Lyme in the eyes). One day at a time...Tom [ ] To - you wrote: .should I push my doctor to give me a referral to a Lyme doctor or see one of the doctors that were recommended to me? My STRONG recommendation is to see a Lyme doc. I don't know where you live but we live in Oregon and docs (even ID's!!) absolutely won't acknowledge Lyme. They claim we don't have it here but the CDC recognizes that we do-plus, our circle of Lyme people is growing. You probably have had it a year or more and a quick 4 weeks of AB's won't take care of it. Get to one of the Lyme literate docs recommended. It took us 14 mos to get treatment for my adult daughter-very frustrating. Hope this little vote for aggressive treatment helps you weigh your options. Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2005 Report Share Posted January 16, 2005 , Thanks for the list - I have 23 out of the 38 symptoms! (sigh) Hope your appt. goes well. Beth RE: [ ] To Beth, For a comprehensive symptom list I worked off of Dr. B.'s list, http://www.igenex.com/burrascano_1102.htm. It lists 38 Lyme symptoms. I put the ones I have into a document that I will give the doctor. Thanks for your response. Be well! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2005 Report Share Posted January 16, 2005 <<<Something else I heard loud and clear yesterday was how Lyme can cause blindness - if we have certain vision problems, it's our responsibility to contact an optometrist. >>>> I have had Chronic Anterior Uveitis....and yes untreated it can cause blindness. My LLMD sent me to a good Ophthalmologist, and then a specialist in Uveitis in Mass..It took years to quiet the eye down. Don't play around...........you will probably need to treat your eye. Conniek nwnj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2005 Report Share Posted January 17, 2005 Hi Connie, In all due respect, an optometrist will probably not help because optometrists are not medical doctors, rather ophthalmologists are. Even then it has been my experience that a good ophthalmologist is worthless, even dangerous if he/she is not lyme literate. Actually, there are only two ophthalmologists in the United States that I am currently aware of that are lyme literate. My daughter became blind in one-third of an eye due to undiagnosed lyme disease. After the 13th doctor finally tested her for LD from Igenex, I took her to a lyme-literate ophthalmologist. The lyme- literate ophthalmologist could not reverse the original one-third blindness. However, a couple of months later that blindness began to worsen, my daughter went back to the lyme-literate ophthamologist and she reversed the second loss of vision, mainly by telling her doctor to put her back on Rocephin. And, by the way, it did not take years to reverse the secondary blindness, rather it reversed immediately upon the Rocephin infusion. a/k/a longtimelymie > <<<Something else I heard loud and clear yesterday was how Lyme can cause > blindness - if we have certain vision problems, it's our responsibility to > contact an optometrist. >>>> > > I have had Chronic Anterior Uveitis....and yes untreated it can cause > blindness. > My LLMD sent me to a good Ophthalmologist, and then a specialist in Uveitis > in Mass..It took years to quiet the eye down. > > Don't play around...........you will probably need to treat your eye. > > Conniek nwnj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2005 Report Share Posted January 17, 2005 <<<In all due respect, an optometrist will probably not help because optometrists are not medical doctors, rather ophthalmologists are. >>> Sorry , You need to reread my posts on Lyme and eye sight....I never said anything about an optometrist.....that was posted by someone else. I was sent to an opthalmologist by my LLMD....they kept in close contact with one another. I was then sent to Dr. at the Massachusetts Eye and Ear Infirmary in Boston...who was also in contact with both my Opthalmologist and my LLMD. Connieknwnj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2005 Report Share Posted January 18, 2005 I found one but I need to find a scanner now. I will let you know though.. you'll be surprised. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2005 Report Share Posted January 18, 2005 That's fine...I can't wait to see it! Re: to I found one but I need to find a scanner now. I will let you know though.. you'll be surprised. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2005 Report Share Posted January 26, 2005 In a message dated 1/26/2005 12:31:46 A.M. Eastern Standard Time, writes: Hello, I'm back..........., a, and the old timers here..... Hi ... I, too, am sorry to hear of the loss of your Mom and all the difficulties your health is encountering. My prayers are with you and I am grateful for all those who have served our country. Thank you. God bless! Love and Prayers, Beth ~*~*~*~*~*~*~*~* Philippians 4:8 (The Message): Friends, I'd say you'll do best by filling your minds and meditating on things that are true, noble, reputable, authentic, compelling, gracious -- the best, not the worst; the beautiful, not the ugly; things to praise, not things to curse. ~*~*~*~*~*~*~*~* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2005 Report Share Posted February 11, 2005 My point it this: T is T. I completely agree with this statement. The delivery system shouldn't alter T's effectiveness. You claim that one delivery system (shots) is better than another delivery system (gel) for a certain ailment (joint and tissue pain). The only data you have in support of this claim is your own (anecdotal) experience. I'm skeptical of this claim. Does anyone else have any data (scientific, anecdotal or otherwise) in support or contradiction of this claim? One reason it's important here is Phil's situation. Phil is having a very hard time finding his equilibrium dosages. It will be much more achievable for Phil to find his equilibrium dosages with gel due to the steady state levels of T that gel delivers as opposed to the roller coaster delivery levels that shots offer. to > > > norton wrote: ---Hi Phil, here's how I see it. Bottom line is that T > is T no matter where you get it from. The individual delivery will > determine the effectiveness of you getting the right amount, whether > it is shots or patches or skin spread on stuff. But, T IS T... > > wrote: > You're contradicting yourself. > > ------------------------------------------------ > , I am contradicting myself? I don't think so, and I don't > feel you are qualified to make such a definitive statement. Just > because you personally have difficulty in interpreting the meaning > of my words does not mean that I am contradicting myself. > Read my words above again if you have to, they are clear. T is T no > matter the source, but it is the source that determines the > effectiveness of the actual T delivery. No one else had a problem > figuring out that distinction except you. Blame your own failure to > process the verbage rather than my failure to present it in any more > clear of a manner. > norton > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2005 Report Share Posted February 11, 2005 > My point it this: T is T. I completely agree with this statement. The > delivery system shouldn't alter T's effectiveness. > > You claim that one delivery system (shots) is better than another > delivery system (gel) for a certain ailment (joint and tissue pain). > The only data you have in support of this claim is your own (anecdotal) > experience. > > I'm skeptical of this claim. Does anyone else have any data > (scientific, anecdotal or otherwise) in support or contradiction of this > claim? > > One reason it's important here is Phil's situation. Phil is having a > very hard time finding his equilibrium dosages. It will be much more > achievable for Phil to find his equilibrium dosages with gel due to the > steady state levels of T that gel delivers as opposed to the roller > coaster delivery levels that shots offer. -------------------------------------------------- Hi , yes you are correct that I expressed a personal opinion from 33 years of various forms of TRT. I know of no studies done to support my own opinion, and no studies done that refute it also. The lack of large pool scientific study neither supports nor negates my contention. However, when I suggested to Philip that he try going on depo injection to help with his own joint and soft tissue pain, he reported back that he felt much better, in fact that he could go up and down stairs for the first time in a long time without the pain. Both of us were taking strong prescription anti inflamatories and pain killers prior to the injections. Injectable Depotestosterone is a steroid, as such it should act much the same as the anti inflamation effects of other steroids. norton Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2005 Report Share Posted February 11, 2005 >I expressed a personal opinion > from 33 years of various forms of TRT. I know of no studies done to > support my own opinion, and no studies done that refute it also. > The lack of large pool scientific study neither supports nor negates > my contention. However, when I suggested to Philip that he try > going on depo injection to help with his own joint and soft tissue > pain, he reported back that he felt much better, in fact that he > could go up and down stairs for the first time in a long time > without the pain. Both of us were taking strong prescription anti > inflamatories and pain killers prior to the injections. Fair enough. However, there can be many reasons for this effect. I propose that we delve into the matter to learn more about it. For example, shots deliver a surge in T which lasts for a while before E2 rises. Perhaps this shock dosage of T in the absense of E2 quells the joint and soft tissue pain? Perhaps a higher, steady state dosage of T gel with proper E2 management would also quell the joint and soft tissue pain? > Injectable Depotestosterone is a steroid, as > such it should act much the same as the > anti inflamation effects of other steroids. > norton Isn't T gel also a steroid? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2005 Report Share Posted February 11, 2005 When i first looked online for T. most of what I found was that T is a Steroid, used for beefing up the male body. B. > > Isn't T gel also a steroid? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2005 Report Share Posted February 18, 2005 Thanks - yes I have an appt with a vascular doc but not until March 1 (earliest they could get me in) and I've been having this trouble since December. It didn't start to get really annoying/painful until the middle of January. Thanks so much for your insight and concern! Kellie in OKC 12-19-03 >From: " juliewmson " <jwmson1@...> >Reply- > >Subject: Re: MGB/Pregnancy - to Kris >Date: Thu, 17 Feb 2005 21:33:51 -0000 > > > >Kellie, > >If you truly have " lymphedema " and not just swelling my advice is >that you see someone who specializes in vascular problems. They can >prescribe the stockings for you. You will actually have to be >measured for them. I had to wear them for a while after my thigh >lift for some disruption of the lymphatics in one leg with severe >swelling in my foot on that side. It finally cleared up though. > > in GA > > > > > >Hi Peg, > > > I too am a nurse, an OR nurse however. I had the MGB in >August of > > >2003 and conceived eight months later. I had no problems with my > > >sugery. I lost 120 pounds. I started at 260 and came down to 140 >and > > >got pregnant. I gained 25 pounds during pregnancy. I had no >problems > > >in my first trimester. In my second trimester I developed severe > > >nephrotic syndrome. My protein albumin was extremely low and I had > > >severe proteinurea, (+5). I had really bad edema. I had to wear > > >prescription strength compression garments for the duration of my > > >pregnancy. I never became pre-eclamptic. My BP never went above > > >120/70. I did have a little bit of IUGR but I had that during my >first > > >pregnancy as well. None of my docs know whether the nephrotic >syndrome > > >was a result of the MGB or something else. My kidney function >tests > > >were normal throughout my pregnancy. I delivered a 4lb10oz baby >boy > > >who is now gaining weight appropriately. He was completely healthy > > >otherwise. I'm having a terrible time breastfeeding. I'm a month >post > > >partum and my milk still hasn't come in. I'm pumping and putting >the > > >baby to breast constantly, but no milk. Again, no one seems to >know > > >why. I've been back to my nephrologist and he wants to do a 24 >hour > > >urine collection to measure output and creatinine clearance. I >did one > > >during the pregnancy that was normal, except for output, it was >only > > >500cc.s in 24h. I am notorious for not drinking enough. I've > > >contacted other MGB moms, most had completely normal pregnancies >and > > >most did not have trouble breastfeeding. Any other questions, >write me > > >back. I'd be happy to answer. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > <image.tiff> > > > > > > > > > > > > > > > > • > > > > > > > > > > > > • > > > > > > > > > > > > • > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2005 Report Share Posted February 27, 2005 Hi Annie, You're very welcome! I'll resize the pics now, I can't wait to see them. Take care, > > First of all, I just wanted to thank you for the beautiful work you > did with Ignacio's front page star pic... I've been meaning to > thank you for some time now, but the twins have been sick these past > two weeks so my life has been a little hectic. I will miss seeing > his face but Im just excited to see who will be the beautiful next > front page star... They are all so cute!!! Im telling you, this > group has the most beautiful children!! > > Also... I need your help. As you know I am computer uploading > impaired... lol. After hearing some of our members complain that I > havent uploaded recent pics of the twins, I finally got hubby to do > it tonight. But we forgot to compress the file and both pics are > more than 1,000kb. Can you please reduce the file size so that I > can upload some more pics in the near future? > > THANK YOU!!! :-) > > Annie > Mom to twins, Ignacio (DOC Grad 5/2004) & > San , PR Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2005 Report Share Posted May 10, 2005 Hi , Kellie in OKC here - my husband and I are hoping to have a vacation in Vegas over Memorial Day through the first week in June. We are hoping to stay on the strip. I would love to meet you and any other MGB'ers while we're there. Could you respond back to me and let me know maybe how to contact you or others. I'd love to let you know for sure if we get to come and where we'll be. Thanks bunches!! Kellie in OKC 12-19-03 >From: " walonika4u " <walonika4u@...> >Reply- > >Subject: *******VIVA LAS VEGAS SEMINAR/SUPPORT******** >Date: Tue, 10 May 2005 03:57:16 -0000 > > > PRE-OP, POST-OPS, FRIENDS AND FAMILY MEMBERS > > PLEASE JOIN, Dr Rutledge, Dr. Peraglie and the CLOS Staff > > > > SATURDAY May 14, 2005 > > > > For an Educational seminar and support group meeting. > > This is a great opportunity to ask pre-op and post-op questions. > > > > Where: Sunset Station Hotel and Casino > > In the Santa Room/2nd floor hotel tower > > 1301 W Sunset Road, NV 89014 > > (Interstate 93 – 95 and Sunset Road) > > (702) 547-777 > > > > When: Saturday May 14, 2005 at 1:00 p.m. > > > > Please feel free to call our office with any questions > > > > Call for directions at (702) 400-8636. > > > > We look forward to seeing you there. ;-) > > > > Thank you, > > > " Trish " Lanman > > Vice President CELOS, Western Division > > Office: (702) 456-4643 > > Cell: (702) 376-3446 > > Fax: (702) 456-1173 > > pel@... > > > > Sandy Brubaker > > Executive Assistant CELOS, Western Division > > Cell: (702)376-3647 > > Sandyb@... > > > > > > Patient Representative CELOS, Western Division > > Cell: (702) 400-8636 > > @... > > Website: clos.net > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2005 Report Share Posted May 21, 2005 HI ... Since you seem to be the one that gets all the research information, I was wondering if you have found any info on kidney related problems that go along with RA. I also suffer with gout, and my gout seems to have gotten worse since I was diagnosed with RA...which has led to more kidney problems also. Seems my kidneys don't know what to do with the uric (Spelling???) acid and make lots of kidney stones along the way. If it were the small ones that I could painfully pass...I could live with it. But my kidneys seems to like to collect them and make giant stones..larger than a 1/2 " in diameter. My doctors don't know if there is any connection between the RA and the Gout, and my kidney problems. The large stones are very painful as they seem to move about in my kidney...never causing a blockage...just a great deal of pain. I take meds to try to dissolve the stones...but they cause me to have an upset stomach most of the time and taking my pain meds with an upset stomach is not fun. Its almost a " Catch 22 " situation. I take Enbrel shots for my RA and it works nicely...some days better than others...but I can at least walk in WalMart without feeling like I am going to pass out from the pain in my hips. Being only 47 years old and being in so much pain all the time is no fun..and adding kidney stones into the mix is really no fun. All of my docs are at a loss as to what to tell me..and I just can't go around all the time in a haze from taking the high power pain meds my Urologist gives me for the kidney pain. Any suggestions where to look would be helpful... Larry Holmack in New Orleans __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2005 Report Share Posted May 23, 2005 Larry, as you can see from the research articles a posted, having both RA and gout is unusual. How did your physicians decide it is both and not one or the other? Are you strongly RF-positive? Do you have psoriasis? What sort of stones are you forming? Aside from Enbrel, what else are you taking? We have had a few people in the group with RA mention problems with kidney stones. Not an MD I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org Re: [ ] To > > > HI ... > > > > Since you seem to be the one that gets all the research information, I was > wondering if you have found any info on kidney related problems that go > along with RA. I also suffer with gout, and my gout seems to have gotten > worse since I was diagnosed with RA...which has led to more kidney > problems also. Seems my kidneys don't know what to do with the uric > (Spelling???) acid and make lots of kidney stones along the way. If it > were the small ones that I could painfully pass...I could live with it. > But my kidneys seems to like to collect them and make giant stones..larger > than a 1/2 " in diameter. My doctors don't know if there is any connection > between the RA and the Gout, and my kidney problems. The large stones are > very painful as they seem to move about in my kidney...never causing a > blockage...just a great deal of pain. I take meds to try to dissolve the > stones...but they cause me to have an upset stomach most of the time and > taking my pain meds with an upset stomach is not fun. Its > almost a " Catch 22 " situation. I take Enbrel shots for my RA and it works > nicely...some days better than others...but I can at least walk in WalMart > without feeling like I am going to pass out from the pain in my hips. > Being only 47 years old and being in so much pain all the time is no > fun..and adding kidney stones into the mix is really no fun. > > > > All of my docs are at a loss as to what to tell me..and I just can't go > around all the time in a haze from taking the high power pain meds my > Urologist gives me for the kidney pain. > > Any suggestions where to look would be helpful... > > > > Larry Holmack in New Orleans Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2005 Report Share Posted May 23, 2005 Larry, Are you taking any other meds for your RA other than Enbrel? What is your dosage? How often? By Injection? as far as only the RA problem, how effective is it? Pat > > > HI ... > > > > Since you seem to be the one that gets all the research information, I was wondering if you have found any info on kidney related problems that go along with RA. I also suffer with gout, and my gout seems to have gotten worse since I was diagnosed with RA...which has led to more kidney problems also. Seems my kidneys don't know what to do with the uric (Spelling???) acid and make lots of kidney stones along the way. If it were the small ones that I could painfully pass...I could live with it. But my kidneys seems to like to collect them and make giant stones..larger than a 1/2 " in diameter. My doctors don't know if there is any connection between the RA and the Gout, and my kidney problems. The large stones are very painful as they seem to move about in my kidney...never causing a blockage...just a great deal of pain. I take meds to try to dissolve the stones...but they cause me to have an upset stomach most of the time and taking my pain meds with an upset stomach is not fun. Its > almost a " Catch 22 " situation. I take Enbrel shots for my RA and it works nicely...some days better than others...but I can at least walk in WalMart without feeling like I am going to pass out from the pain in my hips. Being only 47 years old and being in so much pain all the time is no fun..and adding kidney stones into the mix is really no fun. > > > > All of my docs are at a loss as to what to tell me..and I just can't go around all the time in a haze from taking the high power pain meds my Urologist gives me for the kidney pain. > > Any suggestions where to look would be helpful... > > > > Larry Holmack in New Orleans > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2005 Report Share Posted June 2, 2005 Hi Miriam, What happened to your LFTs after dropping pred. quickly (what did you drop from in a week anyhow?) I know I probably shoudl see a liver doc but the cost is an issue for me. In Ireland its €50 just to see a doctor never mind a specialist (of which there is a grand total of 0 in Limerick anyhow). I am a poor student but luckily the Uni has its own free GP service that I use. My liver doc in Birmingham told me the plan with reducing steroids so until something unexpected happens there is little point seeing a specialist at the moment especially given the cost and time involved in going up to Dublin. --- Miriam Byrne <Miriam.Byrne@...> wrote: --------------------------------- Hi , Just read your email and glad to see you are reducing your steroids slowly.. I made the made the mistake of trying to come off them inside a week and I had a slight cold at the time and ended up being out of work very ill at home for a week and a half! Over six months you'll be grand. I also saw that you said you don't see a liver specialist here, I go to Prof Hegarty in St s in Dublin and he's a fantastic guy. I don't come away feeling like its the end of the world cos somethings not going right. Ask your GP to refer you to him (or any other liver consultant of course!). You should DEFINATELY be seeing a specialist and not just a GP - even if you are only in Ireland for a year or so. I went to my GP a while ago for something and he hadn't a clue about PBC/AIH and its was ME that had to tell HIM the meds I couldn't take! : ) Have a good day, Miriam _______________________________ Recycle Yourself - Be An Organ Donor! : ) ***************************************************** The information contained in this email and in any attachments is confidential and is designated solely for the attention and use of the intended recipient(s). This information may be subject to legal professional privilege. If you are not an intended recipient of this email, you must not use, disclose, copy, distribute or retain this message or any part of it. If you have received this email in error, please notify us immediately and delete all copies of this email from your computer system(s). Arthur Earlsfort Centre Earlsfort Terrace Dublin 2 Ireland Tel: 353-1-6180000 Fax: 353-1-6180618 http://www.arthurcox.com ***************************************************** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2005 Report Share Posted June 12, 2005 Hi there, It is sad that there are doctors around who don't take the parents seriously. I have met so many of those, and it makes me very sad/angry. I mean, of all the people, the mothers know their kids the best, so why aren't we been taken seriously!?! I mean, even with the swelling, rash and fever, the doctor at the ER thought tat everything was normal, that there wasn't anything wrong with Anniina, that attention, loving and a bit of rest wouldn't cure... Oh, even now, when I start thinking about that time, back then, I get furious. Well anyway... thanks for welcoming me in the group. *Sini* Ps... You have relatives in Finland??? That makes us almost family then =) > Hi Sini! > Welcome to the group. I have a daughter, Lexi, who will be 4 in August and > was diagnosed with pauciarticular juvenile rheumatoid arthritis back in > February after many months of doctors insisting that it was just growing pains. The > doctors told me too that I needed to stop paying so much attention to her > complaints and that it was all psychological, until I finally forced them into > referring Lexi to a pediatric rheumatologist. He is wonderful and took blood, > found fluid in her knees on exam, and later her ANA test came back positive and > 6 weeks later her diagnosis was confirmed. I'm sorry to hear that Anniina is > going through this, but I'm glad you found a good doctor - even if it is a > day's drive!!! At least maybe you can make kind of a " mom and daughter's day > out " when you have to make the trip!!! I too have 4 children, 3 girls and the > youngest a boy, and so life in our house sounds very busy too! 2 of my other > children have special needs of different types as well, so we're pretty much > constantly on the go with various doctor and therapy appointments! Hopefully you > will be able to find some more families that live in Finland that are dealing > with this disease and they can be a support, but know that we are all here > (even if it is in cyberspace!) to help support as well! (And maybe some day I > can get to visit my relatives in Finland and stop in to visit you and Anniina > as well!) Hang in there! > > Colorado > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2005 Report Share Posted June 14, 2005 Yes I guess we might be distant family! Don't know where in Finland they live though - I don't keep very good track of family history. All I know is that they are distant cousins of mine! Anyways, welcome!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 > In a message dated 6/16/2005 2:57:41 AM US Mountain Standard Time, > writes: > Well, ladies, I hope I have answered your questions, if not please let > me know. I'll try to do a better job, if you have anymore specific questions. > > Take care and be well. Also, thank you very much for the way you asked your questions; in a non-threatening, non-derrogatory way. > > Sincerely, > > *****Earlier in the week wrote: > Hi , > Thanks so much for taking the time to answer my question. Next time I see > Dr. Fallon (hopefully next fall) I will ask him about it and try to remember to tell you too ok? I am so sorry you are having a hard time and not feeling well. Appreciate your taking the time to answer both of us. I was just surprised he even knew about it!! Thanks!!!!!!!!!!!!! > ******Dear , You are most welcome! It is I who should be thanking you though. You made me re-evaluate my notes so that I wouldn't give out any misleading or false information. I really have a hard time with people that do that and I definitely don't want to be one of them--- thanks again for the kind way you asked your question, I really appreciated it. Yes, I would be very interested to hear what he has to say about the Sodium Chloride / Vitamin C protocol when next you see hime. So please keep me posted about your next visit with Dr. Fallon, that would also be greatly appreciated. By the fall, I will have been on the Sodium Chloride / Vitamin C protocol for at least 4 months. I am continuing to take my ABX once a day at the same time ( I used to take the ABX twice a day ). I can honestly say that it gives me energy and relieves most headaches when I drink the salt water warm with the minerals and vitamins added in liquid form( It tastes like chicken broth without the chicken). I wasn't home when my terrible migraine hit on Monday and wasn't able to try the warm salt water ( really wish I had been, It may have saved me days of pain ). 3 weeks and already really feeling a difference - amazing! Renember I've been sick 28 years and was just diagnosed in January 2005. Anyway, again thank you for your kindness and your offer to let me know what Dr. Fallon really thinks about all of this. Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2005 Report Share Posted June 20, 2005 Thank you too! That's sweet " Dotta Doe. " I understand. I am just stopping by as well. I am up late typing. Have a lot of work tonight, and even though I can barely keep my eyes focused, I wanted to check in on you guys here. I say I am just going to read the messages but I always join in. I just can't seem to resist. Talk to you soon. love/peace Ebony Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2005 Report Share Posted August 2, 2005 Thanks for the info - question: what are your " shots " ? Kellie in OKC 12-19-03 >From: Wendell <vikwendell@...> >Reply- > >Subject: Re: Re: Weight Gain (to Debbie) >Date: Mon, 1 Aug 2005 06:59:02 -0700 (PDT) > >Hi Debbie and : > >I went through this too - I'm about 18 months out. What pulled me out of >the tail spin was dramatically increasing protein and bumping my exercise. >I CRAVED sugar and carbs - seriously craved. Try dramatically bumping >protein and going for an extra walk each day. With me, it took about three >days of redirecting my thoughts until the cravings subsided and I feeling >like my old self. In looking at my diet, when I was craving sugar and >carbs I was only getting about 30-50 grams of protein per day. Bumping the >protein to 80-100 grams per day did the trick. I can't eat that much >meat/protein so I drank my " shots " in the morning and at night and sipped >an Atkins shake through out the day. Those three things adds up to 60 >grams of protein right there. The other 20-40 grams were made up with >turkey, cottage cheese, etc. > >Hang in there and try this - it really worked for me! > > >1/12/04 - Rancho > > <cwebb01@...> wrote: >Hi Debbie, >As of today I am now up 15 pounds!!! This is 3 weeks time. I am so >worried that I emailed Dr H. tonight in hopes that he can give me >some information as to why this is happening. It's like all I think >about if food, just like I did pre-op. I can eat a whole burger and >small fries and 20 minutes later eat 6 oreos. At work, I am eating >something the entire day and while this didn't cause me weight gain >before, now it has. I wonder if there is something I am doing that >is causing this. I only drink the tannic acid free tea, but I do >let myself drink a diet caffeine free pepsi each day, so I wonder if >that would have any negative effect on my desire to eat? I am >faithful about taking my vitatmins,calcium & fiber each day, so that >shouldn't be an issue. All I can say is I am scared silly and I >can't seem to control what I am doing. >Hopefully it will pass for me like it did for you. >Thanks! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi , > > > > > > > > > > One thing that I've noticed is increased hunger. Also, a > > craving > > > > > for sugar!!! Yuk!!! > > > > > > > > > > Joh > > > > > > > > > > > > > > > > > >> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > One more question.... Have you noticed any side effects or > > > > > symptoms with > > > > > > your elevated blood levels? > > > > > > > > > > > > maria > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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