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  1. The doctor I had at the time got me one without trouble. I had fainted towards the back of a parking lot in the summer. I bruised my chest badly on the car door since I fell forward and tried to catch myself and get in the car. It was in the city and NOBODY stopped to help me, ask if I needed help or call somebody. It was a horrible experience. I just explained that to the doctor and that was enough for him to get me one. I also explained that when I am on my own, that if I need to go to the grocery store, etc. I often won't because of parking and feeling faint from standing combined with fatigue. Especially hard for me in really hot months. Having the tag helps me because I can park close to the store, people are more willing to help get my groceries in my car for me, etc. Also, if I were to faint in a handicapped spot, it's close to the store where more people would see me, etc. I think for some of us, it comes down to safety. Now with lyme disease I need it even more, but thankfully I have the tag already and can use it when I need to.
  2. Hi Kim, Make a list of your questions. Either call now or wait till you get the kit. Most LLMD's and their offices are used to dealing with patients that have brain fog, etc. and will give detailed instructions. I would assume this office does that. So you might be able to wait until the kit comes and go from there. Good luck! PS-Make sure you are keeping a running list of questions/concerns and symptoms.
  3. I would join if I were you! That is a great price and VERY low for a good gym. The month to month beats just about anything-alot of gyms don't do that anymore. The machines at the gym should be easier for you and there are TONS you can do for you legs and stay seated. Please consider doing a couple of sessions with a trainer. AFTER making sure the trainer is truly qualified, has the training, etc. The better the trainer, the better off you will be. Than you can develop a program, make sure you are using the machines properly, and avoid injury. It's good to work with a trainer as much as you can IF they are really good and understand your needs. Also, it might be a good idea to have somebody there when you workout OR let them know that if you pass out what you need them to do. Good luck and have fun!
  4. Congratulations!! Sorry, you have to go, but it's great that you got an appointment SO soon. Sometimes people wait three months to a year to be seen! Thank you for editing the name. It's okay-you didn't know. One of those things you learn soon on in the lyme journey. I have not forgotten or ignoring messages about information. I have been flat out in bed for days and am having a really tough time. I will get the info. to you all soon. Just wanted to let you all know that since I saw this thread come up, before I got a chance to post info. OH! On the kit they send you for bloodwork. Make sure somebody competant does it! Get it drawn early in the week, and when it can be FedEx'd right away to the lab. Those bloods have to be handled VERY carefully and can not sit for a day OR over the weekend before being sent.
  5. Why not sit down and CURL your lashes? Don't do that standing for sure! You can get little curling irons for your lashes (Sephora), or use the hand-held regular kind. Another option is lash gel. It's gel specially formulated just for your eyelashes. DO NOT use regular gel thinking it's okay...has to be a special kind, since it's used with the eyes. A few years ago it was hard to find, but it's far more common and most lines carry it these days (you can also use it on your brows if they are getting long-ish and it's not time to have those done). Yet, another option, but kinda (potentially) worrysome with all the allergies we all have...lash tinting. You can go to a special spa and get your lashes dyed whatever color you want (brown, black, navy and most likely crazy colors, though not the best for day to day). When your lashes are dyed, they will stay until all the lashes fall out and re-grow, so you won't have to deal with it but once or twice a year...I forget the cycle but it's not often. Yet, another option ( I am into this stuff!) is getting fake lashes. You can get them semi-permanent put on and they last a month or so...You would have to deal with glue/adhesive. If you did any of these options I would see about checking the ingredients and have a test spot done on your arm and leave it for a few days, to check for any sensitivities. Unless you have really light lashes, mascara isn't a huge deal on a day to day basis unless you are on camera. Lip gloss and a little color on your cheeks tends to go really far (and is less effort and if you have contacts, you won't have to constantly take them out, clean them, etc because you had mascara on). Another thought, some people mention tilting heads. Mascara goes on really easily if you hold your head in a regular position, look down slightly, and brush out and up, than from underneath, from there, do the bottem lashes. Let it dry and re-apply as needed. There is a way you can hold your eye area with your free hand that really helps, but not sure how to explain it.
  6. Kim, Please edit your post so the doctors full name is NOT listed. Just Dr. J and the state. We do not ever list llmd's names on the internet and especially on forums. Treating lyme is very political and there are people that go after doctor's that treat and try to get their license taken away. It might be okay to do it here BUT it is far safer and less risky to just follow what is standard on the internet when discussing a LLMD. I have heard good things about this doctor. 60% of the people with lyme disease do not ever see the tick or a rash. The tick could be as small as this period --->. So it would be very easy to miss! I have a migraine and will post the information you all have asked for later on.
  7. Sophie, Where are you located? If you really want to be on a horse, but have trouble sitting up...You could do theraputic vaulting :-) Somebody to lead the horse or lounge, two-four sidewalkers and they can put people up on the horse with you, if you need the extra help (very normal to do). I am with the largest theraputic vaulting program in the world, and we have "regular" vaulters too. It's far away from me, and I'm not doing it right now, but the benefits are huge. It's kinda like regular physical therapy BUT on a horse, more fun and less painful. If all you wanted to do, was be lifted up onto the horse, and lay down, walk around, that would be fine. You benefit from something that simple! People like the theraputic vaulting more than regular physical therapy, because they say it's more fun and not painful like the traditional kind (though they may still have to do both). Vaulting is the safest equestrian sport! We have worked with people that are paralyzed on the horse, so anything is possible. The club I am talking about accepts everybody and believes in them no matter what the disability is. We have no tolerance of kids that bite or kick humans or horses, but other than that everybody is welcome. Thought I would point this option out. I have OI but am fine riding..it's just standing in place that does me in. Some tack shops rent movies for a very small price. Think international horsey competitions, hours of them...You can also buy World Equestrian Games vidoes with TONS of dressage rides on them. Very much worth the money. Yes, you do have to be balanced on tempi changes. I used to ride ALL of the difficult, greenies or psycho horses that nobody else could ride. I got used to bucking, etc. so tempis are a joy, hehehe.
  8. Sophie, are you still riding? If you are, you should see if anybody has a horse that does at least Prix St. George dressage that is older, a schoolmaster and a total "packer." Have them lounge you some and than you can go off the line if you are comfy and not bouncing. The Grand Prix horses will have ALOT more lift and ooomph to them, than the low level horses. I have ridden many, many Grand Prix jumpers and dressage horses and the majority of them are a total blast. I find alot of them easy to ride, because they know their job, and have working brains. They tend to be more clever and more fun to play with, since some bore easily you can do fancy stuff and really switch things up fast. Riders do need to be in shape, have a soft hand, and a good seat/non-busy leg to ride the upper level horses. Some of the horses are okay will riders not at the top level and others will goof off and not be forgiving (that's why I mentioned a schoolmaster and a packer). Flying leads changes on every stride...I had a jumper that LOVED to do those for fun. On some horses it feels like a small buck, but on good ones it feels a bit like skipping :-) Some horses feel more "loftier" than others...the dressage ones feel more lofty, but the top jumpers do too. It just varies. Cross country really isn't cruel to the horses, nor is vaulting while I am on it. I find what people do to Saddlbreds cruel...the tail, the weights on hooves, the doping, etc. Cross country does take a certain mentality to get through courses (horses too!). I did it when I was young, but didn't ever care for it. So long as the horse is well-conditioned, and the rider knows what they are doing it's okay. It gets bad when you have poorly built courses, horses not conditioned and ignorant riders. That's when you see the bad crashes, horses overworked, etc. I'd say its time I halt and salute at X and leave the arena. Good luck :-)
  9. Have you been tested for co-infections? The night sweats (I have them too, they are rough) are caused by a co-infection, so that really needs to be dealt with. Are you going to a LLMD? If your herx is that long, it sounds like the doctor needs to come up with an alternate plan to make you comfortable. Dehydration...there is a powder you can get that helps with electrolytes. When mine gets bad, we call my doctor and if we need to do IV fluids. So far we haven't had to, but its good to know it can be done if it gets bad. Have you done hormonal testing and tried things to take stress off of the adrenals? Those are things LLMD's typically do. Those things are also made to go haywire thanks to lyme and co-infections. Headaches are part of it too. If you don't handle orals well (some people don't) can you go on IV treatment? I will find the info. on the natural stuff...don't have it handy. Alot of people that are unable to take antibiotics have some improvement with this stuff. Will get the info and post it for you.
  10. Radha, I had a LONG post full of info. on coping with a herx, alternatives, etc. My computer froze and I lost my post at the end of writing it :-( Herxes are rough to deal with. The first one is the worst and each one after it will lessen. They only last a week or less. You can do detox baths, drink lots of waters, etc. Your LLMD might even want to reduce your dose during this time, take you off and put you back on or even switch meds. We sometimes reduce my dose until I am through the worst part. Also, what part of the herx is the worst for you? Pain, vomitting, nausua, mood, fainting, etc? Your LLMD should be able to help you control those things, so you can get through. We address the nausua/vomitting, and pain with appropriate meds, and alternative therapies (massage, relaxation, etc). There is a natural med you can take if you are unable to do the antibiotics at this point. You have to be off of all caffeine and mint for it to work well. It is taken three times a day and dissolves under your tongue. It doesn't taste bad. It is widely used in Europe and is FDA approved to be used in the states. If you want the info. I can find it for you. I urge you to find a way to treat the lyme and bite the bullet to get through the worst. Sadly, lyme only gets worse without treatment. Research and doctors back that statement. It's not worth getting even worse, by not treating. Perhaps a different doctor with a different more balanced approach would be able to help you. Herxes are rough, but all lymies go through them and get better. It's finding ways to get through the bad spots with a support system in advance that makes the difference. Have you been to lymenet? There are lots of old and current discussions on herxes. We all herx about once a month...it varies, but there is a cycle to them and some of it depends on what meds a person is on. I hope you can find a way to get through so you feel better. Good luck and I hope this makes sense. My first post was better but it got lost. grrrr.... You may need a different doctor that deals with severe cases of lyme to be able to help get you through this.
  11. Nicole, I am glad to hear you had some bloodwork done and believe you do not have lyme from that BUT what lab did you use? Igenex is the top lab for testing lyme due to using more than one strain, you see every bar, and they have more advanced testing in general. It's really important to use a lab that does this testing specifically, there are four labs that most people use. Lyme is a CLINICAL diagnosis. Bloodwork further supports the diagnosis. That is why going to a Lyme Literate Doctor is so important. They see so much lyme they can say okay, we need to check you for these other illnesses, we don't think you have lyme. OR they will say, based on your symptoms, patterns, etc we believe you have lyme. From there they will do more bloodwork, have you keep a detailed symptom chart. They may start treatment to see how you do, etc. I am just bringing this up because I do not want to see other people get sicker with lyme disease due to poor testing and doctors that aren't up to speed. Lyme worsens over time and becomes very hard to treat, if it's not dealt with as soon as possible. I do not know where you are located, but if you are in an epidemic area, there is bound to be a LLMD there. It is worth getting an appointment and talking with the doctor. They may say, no its not lyme or it is BUT the lyme doctors are really good at thinking outside of the box, and working to get a patients body balanced. My doctor works on my entire body and does not just focus on lyme. Everything has to be working well to heal and function well and we focus on that. I hope you will re-consider getting tested again, and seeing a LLMD. They might be able to help you far more than another doctor. My LLMD is used to seeing POTS and is great with dealing with it, and mine is nearly gone due to my treatment.
  12. I have Lyme disease AND co-infections. It is important that you get tested for both and know the symptoms of both. If you just treat the lyme and not the co-infections, you will remain sick. As Jenn mentioned, please go ASAP to www.lymnet.org and join the forum. From there, post in the section for "seeking medical help" it's titled something like that...People will send you PMs or emails with names of doctors closest to you. It is VERY VERY important to go to what we refer to as a LLMD-lyme literate doctor. Blood tests aren't the greatest and it's of utmost importance to go to specific labs AND know that lyme is also a clinical diagnosis. Bloodwork doesn't mean you don't have it. Some of us are so sick, it doesn't show up in our blood until we have been treated for awhile...the body stops recognizing the antibodies, until treatment and the body understands what is going on. Lyme disease treatment is controversial, there are not alot of doctors that really understand how to diagnose and treat the disease. It is actually worse than trying to find a doctor to treat POTS. In the main section of the forum, feel free to post that you are a newbie, and all of your questions. It is a great group of folks, and they will help you. Find a symtoms list and check off all symptoms you have. It also helps the LLMD if you keep a symptom chart, that you can find online. There are patterns to lyme disease and co-infections. If the doctor sees that certain things happen every three weeks for example, it will be a huge help in diagnosing. Nobody ever told us lyme can be a cause of POTS. If a doctor had told us this, it would have saved me from years of being really ill and suffering. Before I started treatment I was fainting everyday, multiple times. It was to the point of me sitting up in bed and fainting, getting out of bed fainting...you get the idea. Now I am going weeks without syncope episodes. When I have flairs, I faint, but it is more rare than common these days. I do still have pre-sync and tackycardia. The pre-sync is ALOT less and tackcardia is actually a lyme disease symptom. Another good website is www.ilads.org They have a two page overview on lyme disease that you should read, along with lots of journal articles, etc. Good luck and if you have more questions please feel free to post here or PM me.
  13. I do really well with Zithro. BUT I do not take beta blockers. Somebody else might have some experience with that. We all react SO differently. Are you taking the antibiotic as a Z-pack, three or five days or longer? I do really well with it, but always take new meds during the day, when I have somebody with me "just in case." We also keep an epi-pen and bendryl handy. Better to be safe than sorry! Good luck and I hope you feel better soon!!
  14. I am going to go try to find a link to the american group AARP (for older folks). They are a great group and have a magazine and they put the articles up online. Several months ago they had an article about PAIN. Many Americans go around in chronic, severe pain. Either doctors don't want to medicate, or patients are afraid to ask for help, or doctors don't help, or doctors don't understand pain and under-medicate. I have had a rough time with bad doctors as we all have BUT we all have a right not to be in pain. If your pain is SOOOOO severe that is changes your quality of life and you unable to function and get everyday tasks done because your pain is so severe-you need something done. There is a difference in needing the pain meds to be able to function and needing them to "take pain away". Not sure if I am explaining this well. Chronic pain folks need the pain med to just be able to get out of bed, etc. It's not a case of wanting them to take feelings away and not cope. Difference of real pain verse an addict. Please read the article on pain. There are ALOT of options available. If your pain is fibro, you would likely respond to a different sort of pain meds that might not be as heavy as others. Can you get to a pain clinic? If you could go to a good one of those that works through options of physical therapy, meditation and than goes to meds or uses them in combo would likely be good for you. That way you are doing things to positively help your body, movement, and hopefully reduce pain. Than you can take something if you need to. I have severe pain and it is being treated. I get a little annoyed when I hear about the "Placebo" effect, because I know that is not what is going on with my body or many others with the same disease. That might be true for folks with fibro, but it is not the case for all. Doctors hear placebo, and they are likely going to want to do even less than they already are. More and more, I am seeing a lack of research and a want of the medical profession to learn more about dysautonomia, lyme disease, pain, etc. Instead they make rash judgements and don't pursue more research and really find out what is going on. Not true of all but it is so for most doctors. Lots more research needs to be done! http://www.aarpmagazine.org/health/prisoners_pain.html Above is a link to the aricle "Prisoners of Pain" from the September/October 2005 issue. They have some other articles about using massage, acupuncture, etc. for pain control.
  15. I'm with Ernie on this one. I had a bad experience at Vanderbilt that was much like Ernie's and I wouldn't ever go back. My family filed a complaint. I went to see a new doctor and it turns out he is on the board at Vanderbilt. He wanted to know ALL about what went on and was shocked. He listened to everything, went to a board meeting, brought up the issue and they investigated and changes have been made. That was after Ernie was there and after I was there. The people on here that are saying good things, went after the changes. So it should be better, but I do not know personally. It's great to hear good things about the place, but my experience was so horrible, I would not ever step a foot back inside. The choice is up to you and all of us are different. Certainly consider it, but I just wanted to add support and validation to what Ernie was voicing.
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