Lyme on Discovery Health Channel Mystery ER

Discussion in 'Fibromyalgia Main Forum' started by munch1958, Mar 9, 2007.

  1. munch1958

    munch1958 Member

    Discovery Health Channel Mystery ER
    March 10th 6 PM EST???
    Dr. Burrascano

    http://health.discovery.com/tvlistings/episode.jsp?episode=4&cpi=117372&gid=0&channel=DHC

    The episode is on after the story "Bittersweet". The segment is called "Awakening the Beast".

  2. mollystwin

    mollystwin New Member

    Molly saw a segment last night with a Burrascano patient who had lyme and every single coinfection there is! He ordered her to bed rest for 2 years. I wonder if this is the same one. From reading the brief description, it may be a differnt one.

    I will be sure to watch!!
  3. munch1958

    munch1958 Member

    I Tivo'd it and can't wait to show it to my husband. Every now and then he gets mad about the money we spent on health care. It's tax time so I'm hearing about $$$$.

    I can't believe she was told she EBV and only two years to live. The most shocking part was when she decided she was going to drink bleach to end it all. After treatment she got married and regained her life. Very inspiring!

    I wish more stories would get out there. There was a segment on Lyme on Mystery Diagnosis not too long ago. I deleted it and am now sorry. It was about a teenage girl.
    Did anybody see that? I'd like to get the episode number.

    What struck me about her struggle was that no narcotic would relieve her pain. That's a problem I'm having. I kept rewinding and putting symptom list and putting it on pause so I could read it and check mine off. That was the first thing that made me question FFC.

    This girl's parents sent her to some physical therapy camp to learn how to "work thru the pain". She was tested for Lyme several times and was told she didn't have it. This was AFTER her fingers locked up and she couldn't play the piano anymore.

    She went to a camp in Europe and met an American teen with the same set of symptoms. Then she got diagnosed. I don't remember who the doctor was in that show. She also regained her life.

    I just printed Dr. B's guidelines for Lyme treatment for some "light" reading material. I glanced through it and he said exercise is essential for recovery.
    http://www.ilads.org/files/burrascano_0905.pdf[This Message was Edited on 03/10/2007]
  4. wrthster

    wrthster New Member

    I watched the episode, and it was very well done. It would be great if more of this stuff could get out to the masses so they might understand us better and what we go trough on a regular basis.

    It is hard, because so many symptoms of Lyme are the exact same as CFS. I think the main difference between Lyme and CFS Physicians are that LLMD's are much more agressive treators. At any rate, I am going to try to get a copy of that to show people who doubt. Curios for all of your opinions.
  5. monicaz49

    monicaz49 New Member

    Yes, tic bites was even mentioned as a possible cause of the previous mystery diagnosis story! Wow.
    It was a good show....i was so happy it was on..i totally related to that girl.

    I wish i had a copy of it on dvd! lol
  6. munch1958

    munch1958 Member

    I checked Discovery Health's website but don't see when the show will be repeated. I'm no expert on Lyme but I think there are a few distinguishing characteristics between CF & FM. You can read up on it at: http://flash.lymenet.org/

    I'm still trying to find the episode number for the Mystery Diagnosis show so I can record that one again. I think Dr. B was the doctor on that show too. [This Message was Edited on 03/11/2007]
  7. munch1958

    munch1958 Member

    I'm an hour behind you in Illinois. Wish you had called me. I was shocked speechless after watching the show TWICE on Friday. My mind was racing afterwards.

    Since posting of phone numbers and email addresses are not allowed I've been trying to come up with a way to get around the rules. If either of you are interested google the name of our bar. The phone number is on the home page. You can always leave a message for me there. I used the same name on the Lymenet.org website and included my email.

    I made my hubby watch the show today. He was pushing for me to see the doc in Chicago because he doesn't want to make multiple trips to Springfield, MO. Now he thinks MO would be best.

    From some posts on another website I think the story is about this woman. Here's her website with the full story:
    http://www.wildcondor.com/ I haven't had a chance to read everything on her website.

    When I was involved with the Endo Assoc I was on Oprah twice. My endo story was featured in an issue of Family Circle magazine and on info segments on HSN. Each time the magazine article writer/producer gathered so much more information from me then ever made it on the show. I'm sure the Discovery ER show was the same thing.
  8. mollystwin

    mollystwin New Member

    I'm on the phone with Molly right now. She is going to post on Lyme net right now. Her name is MOJO. It's a fast moving board and she cant find your post.

    You can get her email from that board. And she can give you mine as well. I'm not on that board yet but will be soon.
  9. munch1958

    munch1958 Member

    Hi! I look forward to talking to you both one of these days. Guess I'm going those those grief stages on this LD dx. Disbelief. Anger. Depression. Bargaining. etc.

    My one post on Flash Lymenet is in the medical question section -- Under Looking for LLMD Chicago area. I've got two PM replies so far. I want to spend more time on that board and less on the this board. There is way too much about LD that I don't know.

    The FFC center manager replied to my email today. The doctor is going to review my case and get back to me. Last time I complained they gave me a free office visit.

    The medical staff sent me a $25 off coupon because I had not been there in 16 weeks. That's a$$ backwards. I should have gotten coupons for supplements after spending a zillion dollars or buy 2 get 1 free deals.

    Every time I make cookies I send the FFC cookie monsters there 2-3 dozen. I don't eat them so I have to wait until I'm emotionally strong enough to smell hot choc chips made with Baileys and toffee chips. Ruins everyone's candida diet. They really are nice people. I don't think anyone had any intent to defraud us or purposely misdiagnose me. I glad I didn't buy into the package of 10 super viral IVs.

    I was given 120 tablets of Doxy when my Quest WB was positive. Two weeks later I was told to stop taking it because I didn't need it.

    That's when I got the minocycline from my other doctor to follow the roadback.org's protocol. I thought it was a mycoplasma strain they didn't test for that was causing my problems.

    My Wisco Dells doc told me I was CRAZY when I told him about all of the improvement I got from ABX. He also told me I was playing doctor by picking and choosing the therapies offered by 3 different doctors.

    I herxed terribly from the Doxy and had to switch to Minocycline when we went on a motorcycle trip last summer. I was getting fried on Doxy.

    I herxed for the past 3-4 days when I restarted the Doxy the past Wed. That tells me the Bb is still there. Reminds me of the little blond girl in the movie Poltergiest saying "They're here!" I only had about a weeks worth of Doxy left.

    I'm still on 100 mg. of Diflucan. The FFC used 200 mg. so I don't know if it will kill it off at that dose. I'm out of Liv.52 or Liver Care. Hope to get that tomorrow.

    I herx so bad I could vomit when I take diflucan + Minocycline. I also use 3 probiotics. NADH and co enzyme
    Q-10, 1,000 mg. Vitamin D, 1,000 mg. Fish Oil, the usual hormones including 150 mcg of T3, 20 mg. hydrocortisone, Bi-ESt, Progesterone, Testosterone, Bi-Est Liquijell for Va-jay-jay, Multi-Vitamin and High (100) B-Complex Vitamins, Ambien CR, the sleep hormones, pain meds and a muscle relaxer (Soma).

    Dr. E had me try St. John's wort for SAD but it made me insanely hyper. I was so hyped up I could not sleep. I think part of that was due to me quitting the Abx. My mind started racing the way it did before the FFC got me sleeping regular hours. I see him on Wed and will be going over my WB results. He's treated 1,500 cases of fibro so he's had to have encountered some LD before.

    Have you tried Samento, TAO Free Cat's Claw, or Cumanda? I had Bur Bur for Herxing before and it was helpful. The one other time I was on Flagyl for some crazy itchy infection. I got VERY sick. Not sure I want to go back on that.

    I am allergic to sulfa and pcn. I think Bicillin shots are Depot Pcn so those are out for me.

    I am keeping my appointment 4/5 with Dr. C in MO. It's a long way but my case is very complex. After having encephlopathy with the acute onset of sarcoidosis I think an expert would be best. In Japan, some studies show that sarcoid seems to be a co-infection along with Bb in endemic areas. I've always wondering how I came up with that disease.

    My cognitive abilities are not the same as they were before that hospitalization. My near photographic brain has run out of film.

    I pulled my medical records from this 3 week hospitalization and found mention of an insect bite on my leg. They reffered to it as an erythmatous macular area.

    They said I was stumbling and slurring my words because I was drunk and sneaking booze into the hospital. They searched my room but couldn't find any. Because there was NONE. Then they said my brain was fried on too much calcium in my blood stream.

    Furthermore, the ducks (dumb docs) did a bronchoscopy on me to remove the sarcoid from my lungs. They had the non-effective two teired testing plan written up for me. They were running an ELISA for Bb. If positive they were following that up with a WB. If that was positive 21 days of doxy.

    I was transferred to a major university teaching hospital so I never received those tests or the 21 days of doxy. I wonder if things would have been any different.

    I've gone through some major personality changes, lost most of my childhood memories, I'm a social recluse. I unplug my phone for days at a time because I can't stand the ringer. TVs too loud. My computer screen is too bright. Motion in my side mirrors makes me dizzy so I don't drive often.

    If it wasn't for the "Sub-Lyme Twins", Molly & Dar, who knows how long it would have taken before someone put this together! A friend is a guardian angel in disguise. Thanks for watching out for me.
  10. mollystwin

    mollystwin New Member

    I am so sorry that you are feeling so badly!! Your story sounds so familiar to many that I have heard. I think even if you had that 21 days of doxy when you were hospitalized, it may not have mattered. There are many who were treated that way at the initial onset only to become sick like us months or years later. They are finding out that much more is needed after the tick bite than what they initially thought.

    So interesting that you had an insect bite! And the notes about you drinking are something else!! You would think that they could figure that out for sure with a blood test or something instead of writing that in your file!!

    I'm glad that you got a response from FFC manager. Never can remember her name. So Dr. M is going to review your file, or maybe the new dr will. If they send you a free visit, I will be ticked off!! You should get some $$ back, but I'm betting that won't happen!! Or free supplements like you mentioned would be good.

    I am also a social recluse. Don't go anywhere except work once in a while. I don't like to talk on the phone except to Molly. Hopefully we can be better after our treatment, but it will take a long time. I think we can look forward to better days.

    I haven't been herxing too badly, but it's only been a few weeks and my dr has me on the lowest effective dose right now. I did herx like crazy last fall when FFC had me on cipro for 4 months though. I can expect more herxing in my future to be sure.

    I was on samento for 4 weeks in January before my diagnosis. I got up to 8 drops 2x a day and had a herx that had me in bed for 4 days! My dr told me that some can only handle one drop of samento! I think the cumanda is easier for most to tolerate.

    I think I'm going to spend more time on other lyme boards as well. I'm a member of healing well already and will sign up for the others as well.

    I like our new nickname. Sublyme twins!! We are happy that you are being treated based on our experience!
  11. munch1958

    munch1958 Member

    Hi Molly!

    Wow! The things I write while under the influence of Ambien CR! Looks like I'm Ambien Writing now. I was Ambien Eating my hubby's cereal at night so we moved it to where I can't reach it. (I'm 4'11") Wheat makes me feel even worse the next day.

    My dad was a twin so we grew up with lots of twin humor. Glad you didn't mind the nicknames "Sublyme Sublyme". Since we own a bar with a downloading jukebox I've heard more music by Sublime then I'd ever listen to at home.

    I quit my job as bar manager 2 years ago. I started listening to Dish Network 973 (Instrumental Elevator Music with no words.) I thought I was just getting old not realizing how sensitive I am to sound. I don't want to drive anymore especially at night because the images in the side mirrors make me dizzy. Thought it was the sarcoid.

    I'm trying to navigate Lymenet and figure out what the buttons do. I was able to send/receive private messages which is a great feature.

    I took my last dose of Doxy. I will switch back to Minocycline tomorrow. The herxing has let up so I feel more human.

    Someone on the Lymenet wrote to me and said that sarcoid and LD were brother/sister diseases. 11 per 100,000 people get sarcoid. That's a co-infection no one is talking about yet. I do wish they would stop considering at a differential diagnosis on House.

    Sometimes, I do feel ghoulish watching Mystery Diagnosis and Mystery ER. I feel very sorry for the folks on the shows. They've been to as many doctors as I have. My husband has started watching the shows too. He thought I was the only one on the planet that couldn't be figured out by doctors.

    In medical school they teach them to think horses not zebras when they hear hoof beats. I'm my case they need to always look for the Zebra like House does.

    I'm going back to Dr. Edelberg tomorrow. He's been treating the fibro pain aggressively with Opana ER (supposed to be twice as strong as Oxycontin). If he doesn't think he can help my plan is to see this doctor:

    http://www.drjackzoldan.com/Chronic-fatigue-syndrome.html

    He's got quite a few pages on Bb on his website. Otherwise, my husband will fly me to Springfield, MO in April to see Dr. C.

    I've also got to find out if Aetna (my insurance) will cover any diagnosis of Lyme. How has your coverage been? Since I don't have a CDC case definition or a positive Western Blot I don't know what Abx they will cover. Maybe they will pay for IV Abx because of the sarcoid diagnosis.

    I'm not holding my breath waiting on FFC. I insisted on repeat labs in Nov even tho I wasn't scheduled until Jan. It was over 4 weeks later that they finally called to let me know what the doctor thought (come in for more IVs). I was upset because I had the results a week after the blood was drawn.

    Talk to you soon!
    Linda



  12. ulala

    ulala New Member

    with Lyme and sarcoid? I was diagnosed with sarcoid in 1992 with a kvein test. They injected some sarcoid in my wrist like a TB test and it was positive, although two doctors argued over the result. One said the cells were too large and the other said they were sarcoid.

    I still think I have Lyme and have had numerous tests. The FFC said negative. Another doctor did a brain scan that supposedly shows something that is different in Lyme brains but it was negative.

    You must be very relieved to have finally found out what you have and to know that there is a light at the end of the tunnel!

    What did you have in your lungs? Did they remove them? I have some small spots in my lungs but they're too small to biopsy so they are just watching them and doing CT scans every six months. So far they haven't grown.

    Best wishes for a very speedy recovery!!!!!!!!!!