Guest guest Posted July 19, 2002 Report Share Posted July 19, 2002 I cannot answer your msgs. because of the backgrounds. I can't even see what i'm typing here. PLease stop the backgrounds! Please? Sue RJS wrote: where have all the zappers gone,,,,,,,???????? having withdrawal symptoms here from no funnies or converstions.......sue, sharon, jess, shawn, turk, bill....stacie,,,tom,,lisa,,,where is all you guys....beccas away so i forgive her.. how bout you pete...where is ya?? and colin, and all i cant think of right now........ saw the e.p today....he is going to talk it over with the cardio and possibly take me off amiodarone...no zaps in a year and a half. sure hope it works. ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Please visit the Zapper homepage at http://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2002 Report Share Posted July 19, 2002 i cant figure that out sue.....i get messages like that and dont have a problem...if one of the graphics is covering several words... i just scroll down a bit and the words are exposed. bob in pa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2002 Report Share Posted July 19, 2002 If you email me GGrom48@..., I have the Connecticut contact you need. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2002 Report Share Posted July 19, 2002 Hi there! don't worry, I don't think you are bossy or anything! I'm actually touched by your concern ) anyway, I have been to the cardiologist, had an emergency angiogram (where they put the wire thing up through the femeral artery, and inject dye etc) it showed my arteries are all clear, so I'm having more testing done. The cardiologist forwarded all the test results, EKG readings etc. to my Achalasia specialist, the cardiologist thought because he could not see any problems in the angiogram that could be causing the bad EKG readings, it might be caused by my achalasia. But my achalasia doctor did not seem to think so, but he said you never know. He's quite willing to go ahead with the surgery, I have to go in the day before for a thorough workup with the anasthiesiologist (sorry for the spelling) etc. I've had an echocardiogram, the angiogram, worn a holter monitor, now I'll be going for the thallium stress test. When I say bad heart day, I meant my heart kept having pvc's, lots of them, and I was very tired, ill feeling. I am feeling a lot better today, only one small pvc all day! Maybe I had a bug or something. Anyway, my cardiologist and achalasia specialist are in contact about me, so not to worry! I do enough for at least a hundred people! It's funny, this came on quite suddenly, although I had been to see my family dr. only 2 weeks before telling him how badly I had been feeling for months now. Beyond tired, the expression " bone weary " is more like it. sleeping at least 12 hours a day, with naps, and very out of breath all the time. On mothers day, I was in er, with a bygeminy tachycardia, which lasted about 1/2 hour altogether and stopped when they gave me nitro. the EKG was normal after, and 4 hours later still normal. It was about 2 weeks later, when I went for a regular stress test, they hooked me up to the EKG machine, and put me in intensive care, and did the angiogram, they thought I had severe coronary artery disease, but as I said the angiogram was clear! I had another EKG last friday, and it's still showing the same inverted t waves. I was hoping it would be gone! I'll keep you all up to date, and believe me, when I go for surgery, I'll be asking for lot's of prayers! Janet. > Janet, > > I just saw your post about your having a thallium stress test. YOU > definately need to tell YOUR surgeon your concerns here about your heart > before HE does any type of surgery on you? > Can I ask what you meant by haveing a " very bad heart day " ??? Are you > talking chest pain, or what type of pain are you talking about:? Who > did order that stress test, the surgeon. and Did a cardiologist see > you?? A good surgeon will have a cardiologist do a work up on you > before you have an surgery scheduled, I would think anyhow. > Esp if you have heart problems and they do not know why? I am going > through that right now. My surgeon will NOT touch me until the > cardiologist gives the ok. That just makes good sense. > I have read some of your posts and my mind is kinda blank right now. Do > youhave high bp, irregular heart rate? anything like that? > I suggest you call your family doc, or that surgeon and ask him to get a > cardiac consult on YOU BEFORE any surgery takes place. I am not trying > to scare you but that just sounds like it should be done, and most of us > here would tell you the same thing. > That is the first thing they do IF you go to ER with chest discomfort, > Run all types of tests to rule out heart problems, because A symptoms > are just like having a heart attack. So HEART problems HAVE to be ruled > OUT before getting A taken care of. > Please get your surgeon to have a cardiologist evaluate you first..... > > janers > let me know will you, even if it is at home addy > rojakort@b... > i don't mean to sound like a smart ass, or bossy, just worried sometimes > that heart problems are over looked a lot. Been there and done that > too. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2002 Report Share Posted July 20, 2002 Oh , This in many ways sounds like my own story. I learned long ago that there are many doctors who treat for money. I am not saying they don't have any heart but mistakes are so common. I learned a long time ago to not trust all doctors. If I had listened to my daughters pediatrician , who let her go on five months with a seriuos infection, she would be dead. I won't go into big detail becuase this case was not lyme related (well it was kind of but I hadn't heard of Lyme Disease then). I went through 16 doctors in Idaho and 4 here in Pennsylvania all insisting that I did not have Lyme Disease or my children. Well I can tell you now my children were born with it. My husband is also comming down sick. We are sure he has it too. I have a positive pcr as well as my three beautiful daughters. One showed up in the blood (Myesha) and the three of us others come back in our urine. My husband has had two of the pcr tests so far. But looking back I had it since I was fourteen after talking to my Mom. She said I had the rash on my right ankle and it spread to my knee. I am now almost 29, I will be on the 30th. My children got in utero. If I were you I would find an LLMD a doctor who knows all about Lyme. I hope things will get better for you. Please try and make it so you can get treated now. Do not wait for the doctor to do something because you will be waiting a long time and it sounds like you are running into late stage Lyme real fast...don't wait.........I tried that method and now we are paying big for it. I got this disease in the west probably from Wyoming or in Idaho..possibly in Colorado. Cyntha Landon Lititz, PA [ ] (unknown) I live in Connecticut now, but I didn't grow up in CT. So I didn't spend the last 15 years hearing about Lyme. I knew only passing stuff about it. My stats professor had it, has it? I didn't even know enough to know if that statement should be chronically present tense or safely tucked away in the past. I knew Lyme could be bad. I read something at the school infirmary about how it can manifest in any number of ways. They don't get terribly specific on those posters, but the word " multisystemic " was used I think. Then about a month ago I got this rash that looked just like the picture on the Lyme Disease poster at the infirmary. I had no other symptoms to speak of but I went to my doctor and said " hey is this like one of those rashes that I should be worried about? " She said yes, but reminded me that it could be things other than Lyme. She drew a blood test anyhow. While we waited for results that week, symptoms started popping up. The rash expanded every day....by the hour it seemed... and I felt worse and worse. Headaches, exhaustion, a low temp, and soreness here and there, but also this general feeling of just overall bad. After putting up with this for a few days, I saw her again and she put me on Doxycycline (despite the test results still not being in). Then she called me that night to tell me the test was negative. She said it made little sense for me to continue with the antibiotic since the result was negative. I expressed a concern it was a false negative, but I didn't insist. I didn't know too much about the testing and the little window of opportunity that catching an early infection might afford you. Also, this woman is a new doctor for me. I had just met her in May and I was trying to give her the benefit of the doubt, trying not to get off on the wrong foot. I get onto the wrong foot with doctors more often than not. It doesn't help having divorced one. I know they're all too human, and they really hate that. But I also know they have knowledge, information, and skills that can be quite useful if you can find the right approach. And I hate that, because it shouldn't have to be that way. I followed her advice for one day. The rash got bigger and bigger. I felt worse than ever that night. My boyfriend showed me some stuff about Lyme tests and early false negatives he'd found online. These were articles written by researchers, not just little " Lyme fact sheets for kiddies " web sites (which I suppose are useful but not what I needed). This all scared the hell out of me. I decided I'd rather go against my doctor's advice and put up with doxy by mouth now than chance this getting worse and needing IV antibiotics right as the Fall semester is starting. So I started taking the doxy again. My doc and I had a little chat about that on the phone a few days later. I told her unless she could give a really good medical reason for me to NOT take the doxy, I would prefer to take it than to take my chances that the test was indeed a genuine negative. She was not happy, but accepted it I guess. She asked me to come back in for another test in a few weeks, which I did. I didn't see her at that time, I saw only a nurse who didn't talk much while she drew the blood. I was feeling crappy still, but I was not sure how much of how I felt was the doxy and how much was Lyme. Lots of headaches, and lots of nausea. Fatigue. I had about 4 hours of work in me a day, if I was lucky. Then I'd just fall apart and have to go to bed (or couch, or chair, or floor). I asked the nurse if Doxy side effects could cause this, and she said it could be pretty bad. Upon reflection, it struck me that I was not entirely sure that was an actual answer to my question, but I took it to mean " yes " at the time. I didn't push her...I guess I kind of worried she or someone would say something like " we TOLD you not to take it! " The second test was drawn July 1st, then came the big U.S. Independence Day holiday, no offices open. I called the next week and found out my doctor was on vacation. I was referred to a covering physician who told me the test was positive and indicated an early infection. She seemed relieved to hear that I had finished all 21 days of my Doxy (100 mg 2x a day.*). The referring doctor was not much help after hearing I took the whole course. She just said " Oh good...you should be fine then " and hung up. That was a week ago Monday and the problem is I'm not feeling fine. (* = yes, I read the " doxy doesn't work " post just now.does it not work on everyone or do you think its efficacy might depend at least partly on weight and tetracycline exposure? I'm not a big person and I'd never had cyclines before) It's been almost two weeks since I finished the doxycyline. I am still having these spells that I associated with the doxy when I was taking it....nausea with periods of severe nausea, funny taste in my mouth, headache, dizziness/lightheaded...and a few other symptoms that seem rather like Lyme (fatigue, stiff neck/back, this sort of fuzzy head feeling.hard to describe). A family member I just saw who I hadn't seen in a few weeks told me I look " funny colored " although I don't think my eyes look yellow so I don't think it's jaundice, but who knows? I sure don't. Could be the doxy was not so nice to my liver? When I finally spoke to my doctor this Monday, she told me that the levels from the second test were low and I think she said something about " equivocal " results, which to me does not mean positive. But then I think I also would be tempted to want to stress how low the values were if I were her. It probably is more than a little embarrassing to find out you were wrong about something like that. She sounded concerned that I was still feeling bad but she didn't say she could see me. Instead she wanted me to see a particular neurologist for further testing. My insurance company was not to pleased about this plan and insisted that I either see a neurologist that was one of their providers (translation: really far away) or that I just go to the E.R. if I felt " really bad " . But my doctor's office seemed confident that they could get this overridden, and told me to just sit tight. I made an appointment I never kept with the neurologist. After waiting two days for the answer from the insurance company, I found out today that they won't cover it. And my doctor's office is closed on Thursdays. So what do I do now? Over the past few weeks, I've told myself that if I feel REALLY bad I will go to the hospital, but then I feel really bad and all I want to do is stay in bed. And I think, How bad is really bad anyhow? Is this bad enough to make it worth the trouble? What if this is just " normal " ? Or something they can't really treat anyhow? What if I run into that seemingly ubiquitous old boys' network mentality, the one that would label me a hysterical woman who is just looking for attention and who is not really sick? That just drives me NUTS when I get that, and you are likely to get that in some E.R.s if you show up with anything less acute than an axe through the head. According to the E.R. cowboy mentality as well as to the credo of the Managed Care desk jockeys, you're supposed to go to your primary care doctor's office for anything less acute than an axe in the head or a combo stroke/heart attack/cat bite with cat still attached to arm. But what do you do if your doctor is on vacation, on holiday, closed on Thursday, or desperately trying to pawn you off on another service? I feel I'm becoming immobilized. I just sit here feeling crappy, deliberating and assessing myself as if I have some kind of training to know what's serious and what can wait. And regardless of the conclusions I reach, I end up waiting another day - trying to do this the " right " (managed care) way because I just don't feel like I have the strength to push my way through at the moment. But I'm worried. Am I wasting precious time waiting for my doctor to take action? I haven't seen an actual doctor since all this started over a month ago. I have no idea if how I feel is due to Lyme or is due to some lingering effect of the Doxy. And I have no clue how serious these symptoms are. Which brings me to this one small question. Has anyone out there dealt with something like this, and if so, how did it turn out? - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2002 Report Share Posted July 21, 2002 Jalilah. I don't know how close you are to the Mexican border or if it's really necessary---what you are doing is probably just fine---but if you decide you want to try pharmaceuticals they are available in the border city pharmacies for very low cost. Nizoral is $6 for abox of 30 tabs. And you don't need a prescription---you just walk in and buy them from the pharmacist over the counter---minus the BS the US requires. As for dairy: I 've done quite abit of research for several years now and although I know there's a ton of controversy among the " authorities " Re diet, to my knowledge all cheeses are taboo except soy " cheeses " . However, raw natural yogurt with the cultures like Mountain High, Brown Cow or Stonyfield Farm are great and recommended if you're body will tolerate them. Because of course it contains acidophilus to help feed the friendly bacteria in your gut. I'm supposed to be allergic to dairy and yet my body seems to like it so far. Good Luck, Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2002 Report Share Posted July 21, 2002 Bummer. I had 2oz of cream cheese today because I read a diet/treatment plan by a doctor. hard cheeses are the only ones he does not allow. Hmmn. I'm so confused. ( As for the border.. I'm in Mississippi. Thanks for the heads-up, though. Jalilah > Jalilah. > > I don't know how close you are to the Mexican border or if it's really > necessary---what you are doing is probably just fine---but if you decide > you want to try pharmaceuticals they are available in the border city > pharmacies for very low cost. Nizoral is $6 for abox of 30 tabs. > And you don't need a prescription---you just walk in and buy them from > the pharmacist over the counter---minus the BS the US requires. > > As for dairy: I 've done quite abit of research for several years now > and although I know there's a ton of controversy among the " authorities " > Re diet, to my knowledge all cheeses are taboo except soy " cheeses " . > However, raw natural yogurt with the cultures like Mountain High, > Brown Cow or Stonyfield Farm are great and recommended if you're body > will tolerate them. Because of course it contains acidophilus to help > feed the friendly bacteria in your gut. I'm supposed to be allergic to > dairy and yet my body seems to like it so far. > > Good Luck, > Diane > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2002 Report Share Posted July 21, 2002 Thank you, Iris. I am going to take a nap here shortly, and will call my Rheummy tomorrow. Thanks for the sweet note. Much Love... Tess Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 In a message dated 7/24/02 7:53:10 PM Pacific Daylight Time, rebecca81r@... writes: << I was wondering if y'all could pray for me. I gave blood this evening at 6 pm. I drank a bottle of water afterrwards. At 7 pm, I felt dizzy so I sat down then my head I guess went down. Which I didn't know till I woke up 2-3 min later. So I figured that I passed out for 3 min or so. Then after church I drank 2 bottles of water. It hasn't happenend before, but hopefully I'll be okay by tomorrow, I'm slowly better. >> Aw, . How nice you are to donate blood. Hope you are feeling better soon. I'll keep you in my prayers tonight. Gail :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 The first sinus surgery I had was where the doctor cut me clear across the inside of my lip and went in that way. I have had some loss of feeling there ever since. I know it sounds silly but, you know how kids blow through their pressed lips and make that vibrating noise that sounds like you are giving someone the raspberries. I can't do that anymore.......Evie (unknown) Thanks everyone for replying to me. Yesterday I begged for someone to take another look at me and they sent me to an oral surgeon to see if something had gone wrong with the root canal. Years ago I had a Caldwell Luc procedure, which is where they slice your lip and go into your cheek sinus. Anyway, the surgeon looked to see where my infection was coming from and it wasn't the teeth so he went back into the sinuses and said it was a horrible mess and now I need some drain hole cut in there. Whatever. Its not so bad today, because I know I will be better now. Just looks like I have a golf ball in my cheek. I feel very fortunate that my asthma is still at rest and I appreciate all of your input. I will be asking for Singulair on Friday. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 Good luck to you. It seems there are so many possible problems with sinuses....for so many years I thought all I would have to go through is a surgery every few years to clean out the polyps, then I got the allergy to aspirin then asthma. Now I have a mucus sac that will require more surgery (I just had one two months ago!) going in through my forehead! I am so sick of all this, I wish they could just give me a total sinus transplant. At 12:35 AM 7/25/2002 +0000, you wrote: >Thanks everyone for replying to me. Yesterday I begged for someone to >take another look at me and they sent me to an oral surgeon to see if >something had gone wrong with the root canal. Years ago I had a >Caldwell Luc procedure, which is where they slice your lip and go >into your cheek sinus. Anyway, the surgeon looked to see where my >infection was coming from and it wasn't the teeth so he went back >into the sinuses and said it was a horrible mess and now I need some >drain hole cut in there. Whatever. Its not so bad today, because I >know I will be better now. Just looks like I have a golf ball in my >cheek. I feel very fortunate that my asthma is still at rest and I >appreciate all of your input. I will be asking for Singulair on >Friday. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 Gail, Thanks. I'm feeling a little better, just lightheaded and just a pinch dizzy. Yeah, it is a nice thing to do. > > >> > > Aw, . How nice you are to donate blood. > Hope you are feeling better > soon. I'll keep you in my prayers tonight. > Gail :-) > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 In a message dated 7/24/02 10:53:09 PM Eastern Daylight Time, rebecca81r@... writes: > I was wondering if y'all could pray for me. I gave > blood this evening at 6 pm. I drank a bottle of water > afterrwards. At 7 pm, I felt dizzy so I sat down then > my head I guess went down. Which I didn't know till I > woke up 2-3 min later. So I figured that I passed out > for 3 min or so. Then after church I drank 2 bottles > of water. It hasn't happenend before, but hopefully > I'll be okay by tomorrow, I'm slowly better. > You'll be ok . My daughter fainted her first time giving blood too. It's not all that uncommon. {{{{hugs}}}}} Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 Have you looked into a DAN doctor? Usually insurance will not pay for them, but they really care about treating autism. I live in Missouri and there is one in Independence, MO Dr. Bruce Stayton. He is very good. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 Hi~~ I'm new and looking for information. What type of professional do people commonly get their dx from for their child? We've been on this roller coaster for over 4 year with no clear dx, and frankly I'm ready to make my own dx. I just wonder what type of doctor could/should make the " official " dx? Thank you in advance. Dumont Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 Rhonda I had the same problem in New Jersey. The problem is they are money hungry! If you make an appointment with these jerks then its at least $200. Its all about money and dont give a hoot about your child. Its happened to me before and it inferiated me. My question was different then yours. My question was do you do tubal reversals and how much? Since military tricare wasnt to pay for anything well I didnt need a $200 plus out of pocket fee just needed two questions asked. I ended up driving 9 hours one way to get what I needed. I hate HMOs Rhonda because if your primary doesnt agree with you or the doctor is not in the area then your hosed! Right now Rocky mountain HMO refused us due to the NM move lie so now I am in the process of trying to get this blue cross blue shield PPO plan. I sure hope I get what I want. You have a right to be angry Rhonda and I wouldnt take my daughter to them unless I had too! They care more about money then customer services. Also what if you started a treatment plan with them and you had some questions...........you couldnt get them answered without an appointment. To make an appointment means more insurance referals ect and time wasted! I have refused doctors because of there attitude. I am now more into natural home therapies then dealing with jerks. I am so sorry your going through this Rhonda. What state do you live in? Charlene -- (unknown) Just have to do a little whining, thanks to anyone who's listening. I am trying to find a doctor, in my health plan, who specializes in autism and so far have had zero luck. I called a neurologists office the other day and wanted to ask some questions. Basically I just wanted to know if they " treated " kids, you know, did the testing for toxins and that sort of thing but they told me I'd have to make an appointment, they wouldn't talk to me over the phone. Well, my child's already been dx'd so, as a consumer, don't I have a right to ask questions about treatment before I waste my time and their's making yet another appointment? Couldn't they just say no, we don't treat but we know someone who does or mayybe they could say, yes we do treat and whatever...It's so freakin frustrating sometimes!!! These people act like they're volunteers, they get paid to do their job so why can't they take 5 minutes just to answer a couple of simple questions???? Ok, feeling a bit better now. Thanks. Rhonda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 thanks > > You'll be ok . My daughter fainted her > first time giving blood too. > It's not all that uncommon. > {{{{hugs}}}}} > Donna > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 Hi Connie: I'm so sorry to hear what you're going through. My name is Robin (female). I'm 43 and have been living with horrible back pain for 10 years. I went misdiagnosed for 9 of those years. I live in Los Angeles and went from " specialist " to " specialist " . I had many " MRI's " (which I think are the worst tests that reveal nothing I'll tell you why in a minute), bone scans, cat scans, spinal taps, 2 discograms (the 2nd which was done last year was read correctly, thank God), x-rays, neurograms, nerve conductory studies, etc. Every test pointed to abnormalities, but no two doctors could agree on an exact diagnosis. I went through nearly 10 physical therapy programs (complete with biofeedback, pain shrinks etc), healers, accupuncturers and all kinds of medications and alternative things. NOTHING HELPED. The pain got worse and I began spending more and more time in bed (virtually daily). I got very depressed and went from pain medication to medication. A year and a half ago I fell and broke and dislocated my foot (I've previously fell and torn up my ankle many times and have had that same ankle operated on in 1995). In 1995 I had 3 MRI's on that ankle, all the films were read by different people who said I'd torn a tendon which needed to be surgically repaired. When I went into the operating room, they found that the tendons were fine but that I'd torn ALL the ligaments. The MRI's had not picked it up. My orthopedic surgeon said I needed surgery. After the surgery he told me that my back needed to be fixed once and for all. I told him that no one doctor could agree and I'd just resigned myself to a pain management program and living in pain (nerve pain and burning pain in middle of my back). He sent me to see yet another orthopedist who he claimed was " the best " . That doctor made me take another MRI. He also x-rayed me. He immediately told me I had an instability and would need a spinal fusion. First he said I should try and experimental, minimally invasive surgery called IDET and referred me to the doctor who invented it up at Stanford (Northern CA). I first had to have another Discogram. This time they found two significant tears on both the inside and outside of my disc. I went and had the IDET. During the surgery the doctor discovered the disc was completely shredded and leaking. After the surgery he asked my father (who'd gone up north with me) how I'd been able to walk around in so much pain. During my first Discogram in 1998, the doctor said the disc was ruptured, then he changed his mind. All of the MRI's missed my completely shredded/torn disc. So did every other test and doctor. The reason I tell you this is because you just can't give up. Unfortunately for me, it is almost a year and it doesn't appear that the IDET has worked. I am terrified of having a spinal fusion and am going back to the orthopedist who correctly diagnosed me to see what/if any options I have (as well as seeing a neurosurgeon). My torn disc is at L4/L5. I also have a probable facet abnormality at L5/S1 and some nerve impingement problems. But I'm not giving up. Also, Connie, have you tried BOTOX injections for your nerve problems? BOTOX (which is expensive and not covered by some insurance) is a medication that is injected into your muscle. It then paralyzes (for about three months and is completely safe if done by a doctor who knows what he's doing) that muscle. It can be really helpful, particularly if injected into the right muscle that's impinging on a nerve. Once the muscle is paralyzed, it frees up the nerve. What surgery did you have? I don't know if this helps at all, but please know that you are not alone and that there are new advancements being made and doctors out there that are able to offer hope and options that perhaps other doctors have missed. One last thing, a friend of mine is currently going through an amazing pain management program at the Cleveland Clinic in OH. It is covered by Insurance. I'm told that they ween you off of narcotic medication and teach you to live with pain and give you your life back. She told me that one woman came in in a wheelchair (unable to walk cuz of the pain) and is now walking. I don't know how, but I hear it's an amazing program. There are things out there so don't give up hope. Robin Bird3459@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 My daughters go to Dr. Arnold Brenner in land and he is a DAN doctor. We have Blue Cross Blue Shield federal and all we have to paid is the $15.00 co-pay. Beverly Weakley Mom of Jen and Kim Re: (unknown) Have you looked into a DAN doctor? Usually insurance will not pay for them, but they really care about treating autism. I live in Missouri and there is one in Independence, MO Dr. Bruce Stayton. He is very good. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 I just wonder what type of doctor could/should make the " official " > dx? Good question .. I think most of us arrive at a diagnosis through a number of different " professionals " . The most common probably being neurologists and developmental pediatricians. We got our dx through an Autism Resource Center... they were the most helpful and are still the people I turn to when all else fails. I have no idea how many are around and in what states but see what you can find. Lyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 I just wonder what type of doctor could/should make the " official " > dx? Good question .. I think most of us arrive at a diagnosis through a number of different " professionals " . The most common probably being neurologists and developmental pediatricians. We got our dx through an Autism Resource Center... they were the most helpful and are still the people I turn to when all else fails. I have no idea how many are around and in what states but see what you can find. Lyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 Hi Charlene. I live in New Hampshire but I have an HMO plan out of Massachusetts so most doctors here won't take my insurance. However, try as I may, I can't find a doc in my plan from Mass either. Not that I can't find one, I just can't find one who specializes in autism. Unfortunately, I can't afford a DAN doctor right now. I found one but he charges 500 bucks for the initial visit and I just don't have it. It kills me that I can't help my kid due to lack of funds. I have found a naturopathic doctor who is reasonable, or sounds reasonable, she orders all the " right " tests or whatever but I'm not sure where I should have her begin. I know there are several different tests they do before you start detoxing so you'll know what to detox for but I'm still too new to know which ones are the most important. I'm hoping to see this woman next week or the week after. This will come out of pocket but she's much cheaper than anyone I've come across thus far. I asked my PCP to write a referral for me so my HMO would reimburse us but he said I'd be wasting my time seeing a naturopathic. He said he didn't want to see someone benefiting from my desperation and that I'd just leave the office spending a fortune on vitamins that don't work. I must confess, I " m a skeptic at heart, but since I've begun the DMG I've noticed some subtle changes. Her therapist has seen these changes as well so now my dilemma is: are these changes due to the DMG or are they happening cause she's almost 2 and they're supposed to happen?Either way, I don't dare stop, just in case! Ok, I've written a book. Thanks for listening! Rhonda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 I would personally say a neurologist pediatric neurologist. Now here in Colorado everyone is falling towards a pediatric phyologist! charlene -- Re: (unknown) Hi~~ I'm new and looking for information. What type of professional do people commonly get their dx from for their child? We've been on this roller coaster for over 4 year with no clear dx, and frankly I'm ready to make my own dx. I just wonder what type of doctor could/should make the " official " dx? Thank you in advance. Dumont Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 I use TMG on Jen. I did use DMG, but found that the TMG works better on Jen. http://www.kirkmanlabs.com/ According to KirKman's... " Basically TMG is DMG with one more methyl group. TMG stands for Trimethylglycine while DMG stands for Dimethylglycine. DMG is well known in the autistic community. For many, it helps improve speech, behavior and energy. Not many people however know about its " Big Brother " TMG. In short, TMG provides several remarkable benefits and then becomes DMG! TMG donates one methyl group (it has 3 while DMG has 2) that reduces harmful homocysteins and increases beneficial serotonin by stimulating the production of a precursor called SAMe, which acts as a natural antidepressant by increasing the level of serotonin. The remaining two methyl are DMG. The powder has a pleasant sweet taste and includes Folic Acid and Vitamin B12. " Take Care and God Bless, Beverly Weakley Mom of Jen and Kim Re: (unknown) Hi Charlene. I live in New Hampshire but I have an HMO plan out of Massachusetts so most doctors here won't take my insurance. However, try as I may, I can't find a doc in my plan from Mass either. Not that I can't find one, I just can't find one who specializes in autism. Unfortunately, I can't afford a DAN doctor right now. I found one but he charges 500 bucks for the initial visit and I just don't have it. It kills me that I can't help my kid due to lack of funds. I have found a naturopathic doctor who is reasonable, or sounds reasonable, she orders all the " right " tests or whatever but I'm not sure where I should have her begin. I know there are several different tests they do before you start detoxing so you'll know what to detox for but I'm still too new to know which ones are the most important. I'm hoping to see this woman next week or the week after. This will come out of pocket but she's much cheaper than anyone I've come across thus far. I asked my PCP to write a referral for me so my HMO would reimburse us but he said I'd be wasting my time seeing a naturopathic. He said he didn't want to see someone benefiting from my desperation and that I'd just leave the office spending a fortune on vitamins that don't work. I must confess, I " m a skeptic at heart, but since I've begun the DMG I've noticed some subtle changes. Her therapist has seen these changes as well so now my dilemma is: are these changes due to the DMG or are they happening cause she's almost 2 and they're supposed to happen?Either way, I don't dare stop, just in case! Ok, I've written a book. Thanks for listening! Rhonda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 How old was Jen when you began the TMG? Olivia is 22 months. I heard that the earlier the more significant changes. So far, her eye contact has improved tremendously, she babbles like crazy, she's now taking interest in toys and her sensory-touchy-feelly issues have seemed to decrease. Her muscle tone still stinks though and she has no interest in walking or standing so I was hoping this would help. (She scoothches on her butt to get around). Do you think the TMG would be more beneficial or is this just trial and error? Should I be giving her folic acid with the DMG? The only other thing I'm giving her is the probiotics. Also, the most noticeable difference with the DMG is that Olivia now allows me to console her! That's huge. We used to have days of crankiness and crying endlessly, that has subsided substantially. Quote Link to comment Share on other sites More sharing options...
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