God bless you Mandy. I watched the documentary and I am so sick, probably infected over 20 years ago (I'm 30) I've been sick so long I don't even know what it feels like to be well. I am also seeing a LLMD mentioned here in NJ. I don't want to mention his name for privacy reasons to him..I pray I will be well again soon. I have been told by several people antibiodics will not cure me, but my LLMD is agressive and wants me to try it. I just started doxy 200 mg per day and am about to get ramped up. It's rough. But you are an inspiration. My dream is to go back to school too and seeing you do it is truly inspiring.

  I hope you read this Mandy . I too have Lyme Disease and have had it since 2006. I live in CT. and ended treatments in 2009. My Doctor said she has done evertrhing she can do. I'm not satisfied with that answer and next time I see her I am going to demand we resume treatments. At times I was like you, almost passing out, Gritting my teeth cuz the pain was so bad and the Herx's even worse.

  You are a Beautiful Petite women that has shown me that there is Hope still. Prayers and Hope is what I hold on to. If it wasn't for my wife and son I would not be writing this right now. I have become somewhat stable if that's what you want to call it. I just hope my Dr. will resume treatments. There are some drugs that others have mentioned that we didn't try. I believe some of the Spirochetes  are in a "Cyst-Like" state but emerging once again. If anyone know of a Board Certified Infectious Doctor near the north central part of the state I could use a second opinion if she decides that no more can be done.

 I can't believe it took 10 yrs. . Most Doctors would fall over their chairs if I told them I know someone who was treated and after that amount of  time finally got better. MY problem is that My Blot test says my DNA type is  as follows: HLA-DRB1 = 07(DR7). This is consistent with Lyme Triggered Auto- Immune Inflammatory Illness. I guess why I have so much damage. Positive IgG 18,23,28,41 an 45 .IgM was positive on 23.    I think the hardest part is having a strong support system of people praying and helping in anyway they can. How did your Husband get through it ? That's the part my wife and I am having right now. She has to work 48 hrs. , be a caretaker, Run Run Run around for things we need and Doctor visits for me and my son who has Social issues. She has no friends and is completely and utterly exhausted. I try to do what I can Physically but it's not as much as I would like to do. My mind wants to do things and my body won't allow me to do so. I feel useless. She needs things for herself and I can't always provide for her needs Does your husband have any suggestions ?                                                 Thank You an God Bless. Sal       

Hi Mandy. I just want to say that this film and your story brought me and my boyfriend to tears. You are truly an inspiration! I have Lyme disease and went undiagnosed for almost a year. I was told I had arthritis, lupus, chronic fatigue and was just down right mentally ill. I will never forget when a rheumatologist told me that he is "not my type of doctor" inferring I need a psychiatrist. I now know how much suffering you endured. I finally am being treated by a Lyme literate physician for Lyme disease and the clinical diagnosis of bartonella. These doctors save lives and what happened to Dr. Jemsek was truly criminal. I hope somehow we can raise awareness about this horrible disease ; fight it with science not politics. I am so glad you are doing well and I just want you to know you give hope to everyone lyme patient hope! :) I can definitely use the hope because I am really struggling to get well.

Hi Mandy..I was home this past weekend and came across your documentary and really could relate..I was on massive antibiotic therapy for over four years..I am now totally cured..hard to believe if you saw my "before" self..I was blessed because the universe brought me to a doctor in my area who is another Dr Jemsek...his name is Dr Steven Streit in Howell NJ...HE SAVED MY LIFE....I am now an equestrian who jumps with his horse..I studied American Sign Language to help with my practice..I travel back and forth to Sicily to see my extended family..I sail my boat, teach Autistic children to bowl, sit on the Board for Autism NJ...AND MUCH MORE...all this from a guy who was a martial artist who could not get off the rug when he got home because he was so tired..I have sent over 100 people to Dr Steve..he has helped them all ...I share my experience with as many Lyme patients as possible..for the obvious reasons, I try to have these conversations on the phone instead of e-mail..I would very much like to speak with you and share my story..as Dr Steve promised me ...someday all of this will be over..I cried and didn't believe him, but he was correct..I can be reached at the following..cell..908-433-1456, office 732-530-3092, or visit my web site by googling my name and adding Merrill Lynch after it ..I have a lot to share..hope to hear from you soon..and please remember..someday it be just a memory..I know that you will be just fine...regards, Sal

Mandy,

I have been searching for answers for years... years and years. I went to get surgery for carpal tunnel and was told there was no nerve damage. That's when I started really digging and putting all my symptoms together. I posted on a 'brain health' forum and was told directly that I had late stage Lyme and to find a doctor immediately. I live in a rural Minnesota town and can't just get up and do that on my salary. I already support a diabled husband and three small children, at least one of which I now fear also has Lymes.

It was your segments that made me see myself. Your hands... your speach and tremors. I see myself in every movement.

If you were not in this movie, I wouldn't be so convinced that I have late stage Lyme Disease.

 

THANK YOU. You probably saved my life, and perhaps that of my children!

 

Mandy,

I just wanted to congratulate you for pushing through and being so strong!  I only watched the first half of the film so far.  I had to turn it off halfway through because it actually scared me.  I've been diagnosed with fibro, CFS, osteoarthritis and now maybe even rheumatoid arthritis.  ALL the conditions the people on the film talked about.  YIKES!  I've been tested for Lyme, but came back negative.  I don't know what kind of test they did or how accurate it was, but I'm going to ask the doctor for a copy of the test and do my own research.  Anyway, thanks so much for the inspiration and congratulations on your TOTAL success!

Sincerely,

Heather

Thank you Mandy for being so transparent with all of us.  I see Dr. Jemsek in September.  You have opened our eyes to hope in beating Lyme.  God Bless!!

Kim

MANDY..I live very close 2 u ...i also llost DR...im scared and startin 2 get worse again...congratsa on u school..im kinda fqm w that..p.s...was told i looked lik your twin fr video.im a strong personn..would appr an email..thx

Hello Mandy!  I just watched "Under our Skin" and I just wanted to say hello and say thanks for sharing your experience. Also, I wanted to recommend a book to you:  "The Rhodiola Revolution: Transform Your Health with the Herbal Breakthrough of the 21st Century [Book]."  It's a wonderful book about Rhodiola Rosea written by MDs and Ph.Ds intimately connected with Lyme.

Might be worth the read for all folks who suffer from Lyme.  Here's a link to more information about the supplement: http://cms.herbalgram.org/herbalgram/issue56/article2333.html

I'm not connected to this supplement other than the fact that I take it for the various health benefits.  Dr. Gerbarg started taking because she was physically stricken with Lyme.  She speaks of this in the beginning of the book.

Anyway, best wishes and continued health to all.

Drew

Real brain power on dsilpay. Thanks for that answer!

Dear Mandy,

I watched the film Under Our Skin while in the process of being diagnosed with lyme two years ago. The first time I watched the film alone and then I had to show my boyfriend (now my husband). His response while watching the parts with you in it was "Wow, it's like watching you". He couldn't have put it any better. It was incredibly eye opening and hard to watch because I felt like I was watching myself except through someone else.  It hits home when you watch someone else going through the same symptoms you have. I knew after watching the film that I had lyme disease without even needing to wait for my doctor at that time to tell me.

Thankfully after I was diagnosed I found a great doctor in D.C. whos name is Dr. Shor. He is one of the very few doctors who has ever treated me with respect. He is so caring and understanding unlike so many of the doctors I have seen over the last 12 years who have belittled me. Finally after 10 years of tests, hospital stays, going to see doctor after doctor and getting diagnosis after diagnosis. After taking so many pills and not getting any better but actually getting worse. I finally had someone figure out what was causing me to be so sick. That lyme disease was the true diagnosis. Finally, I started a treatment plan with a doctor who knows what he is doing and has other patients who are very similar to me. That doesn't mean that things got any easier because they haven't but now I have hope. 

My husband and I still struggle with the fact that I am so sick and he is so healthy. We work every day to find the right balance since he and I both have the want and need to do normal healthy things but only he can actually do those things most days. Thankfully my husband loves me enough to care about how I feel and to take care of me even though it is hard. I cannot begin to explain how much that means to me. I know how hard it is for people who aren't sick to understand and to want to understand. He goes further than that not only does he keep trying to understand what I am going through each day but he also takes care of me and loves me more than I could ever hope for. 

Anyways I wanted to tell you that I cried so hard and still do everytime I watch the film. But seeing how you fought and still fight to be healthy and to live a normal life makes me want to fight hard too. Your story gives me hope that one day I will be able to do the normal healthy stuff with my husband. I can' t thank you enough for sharing your story with all of us. It means so much to me. You are a true inspiration!

Sincerely,

Kaytlin

My wife was diagnosed with lyme disease after 25 years of being misdiagnosed.   She underwent hyberbaric chamber therapy in recent years and no long has symptons.   The antibiotics didn't work.  The chamber has to be able to take you to at least 2.5 atmospheres and be pure oxygen.   Please look into it.  She is totally normal now with no residual effects. 

hi! i just barely got done watching "under our skin." what an amazing person you are! i wanted to try to see immediatley if there was any way i could contact you and ask you if you have heard of Gerson Therapy yet? it can and has CURED lyme disease and 51 other diseases/cancers and even HIV. the "Gerson Miracle" documentary is a great place to get the basic rundown of it. let me know if you pursue this and how it goes! so glad you are feeling better than you were!

Eager to know what's going on, Mandy! It's like losing hugs ... I hope you are doing very well.

Hi Mandy, I sure wish you would update your health status. Even if it's not a glowing report (of course, I hope it is), I think everyone would benefit from knowing the true status of your health now, if you'd be willing to share it. UOS is fabulous. I helped organize a community screening. Of course, we need to educate, educate, educate. It does, however, leave the viewer with the idea that this is a very "fixable" disease. Which in some cases thankfully, it is; but, the reality in some cases is it's a life long battle. I think the public needs to see that some people just don't become "all better" after treatment. Need to re-treat, continue to treat, try different modalities of treatment etc. I'm almost 3 years fighting and it's still a daily struggle. I still hope and pray for full recovery/remission; but, I know it's no guarantee. Thanks. Hope you're feeling well.

I too have suffered with Lyme as a kid, now 45. Very long story. We were lucky enough to meet with Dr. Jay Jones. We've moved to RI and I recently started a with a raw food supplement that has made a HUGE difference. If I could tell every suffering lyme victim that this might make a difference, it did for me. Based with Omesga 3's and the list goes on. I am so happy to spread the word. [email protected] to our health

Hi Mandy, I live in Orlando as well ..Altamonte Springs and have been sick with chronic neuro lyme for over a year (was infected at least 5 years ago..dog tick) I had to sell my successful dog grooming business in Jan .. my body was about to just collapse ( I was so thin and sickly looking) I barely got thru my days and then came home and collapsed I do not have any family or signifigant other so I am going this all alone which has been extremely tough I just found out that I have a couple of brain lesions and will speak to my LLMD tomorrow about it .. he is in Orlando I have been in treatment only since April and have been on a constant herx from abx treatment I tried a detox program yesterday and over did it but Im trying to find a balance to kill the lyme at a steady pace but get the neuro toxins out asap my main symptoms are FATIGUE , brain fog and neuro symptoms, its attacked most of my organs including my adrenals , and thyroid ..so this contributes to the bone numbing fatigue glad Sean is doing better .. and Im so happy that you are doing much better and in school would love to hear back from you Susan I was wondering if you had lesions as well I am not arthritic but

It has been a long time since your last post. I am about to start Dr. Jemsek's IV antibiotics regimen and would like to know how you are doing now.

Hey guys! Sorry for the delay; I know that you are waiting for an update, but hang in there...just 2 more days!!! I promise to update once we know what's going on with the Oscar's! xoxo mandy

Hi Mandy, I'm so happy you are doing well. A few of us have started a lyme support group in Saratoga Springs, N.Y. My husband contracted Lyme with 3 co-infections in 2007 but luckily I found a Lyme literate doctor and he is doing very well now. Check out our website "Adirondacklymediseasefoundation.com" We have shown "Under Our Skin" so many times to many people who attend our meetings. We just showed the film 3 days last week. It is a very powerful movie. We try and educate and help anyone who needs our help. Best of luck to you and your husband in the future. Stay healthy..Linda Bedell-Kwiatkowski

Hi again Mandy, I hope you are doing well & have heard positive news from nursing school? My LLMD has suggested that I consider going to your favorite doctor:) since almost 2 years of oral antibiotics hasn't done the trick, and I am now on Dr. J's waiting list for new patients. I want to ask you about something I am currently struggling with: Every time my doctor changes my antibiotics I get extremely sick. My health is a confusing roller coaster ride-- a week or 2 of feeling pretty decent, followed by a week or 2 of debilitating pain, fatigue, impaired cognition, etc...The "good" weeks make me question my sanity during the bad ones. I have heard that you get sick before you get better, and that it's a necessary part to getting well again and killing the bacteria. It's difficult to go through the treatments and take the drugs, when the treatments themselves leave me so weak! What is your take on this? I am currently taking a reduced course load in my second year of veterinary school, and so far I have been able to keep my head above water academically. But as you can imagine, in the academic veterinary world, I am constantly surrounded by a confusing variety of opinions regarding Lyme Disease symptoms, tick-borne infections, the Western Blot Antibody tests, and Lyme treatment in general! Extremely educated people question every part of the Lyme diagnosis, as well as the variety of treatments available. The scientific and political controversy is overwhelming and daunting at best! Again, what is your view on this as well? One more question, Mandy, I hope you don't mind. As I mentioned above, my LLMD wants me to consider seeing Dr. J and IV antibiotic therapy. I am struggling with this decision. When did you know it was time to go IV therapy? I'm certainly tired of living what feels like "part-time" life during my good weeks & much less during the bad ones. I want to give killing Borrelia my best shot, and "kick it" if possible. I am a fighter, and I can handle whatever it takes; however, I am terrified of the lack of statistics, and my doctor's assertion that she just doesn't know what will work for me, or if anything ever will. How did you find hope? And how did you make that next leap of faith/decision to take the next step to Dr. J and IV antibiotic therapy? Thanks for your time & thoughts, Emily

I just finished viewing your film and am literally sitting in the theater at USC listening to a Q & A session with the director as I type this comment. I rarely have ever been so compelled to reach out to a director or a person in a film but I was so moved by your courage and perseverance that I felt like I just had too. I don't think words can adequately describe how big of an inspiration you are, and as a student documentary filmmaker, you have solidified my pursuit to use this medium to highlight the voice of the common people -- people like you who are so courageous and sincerely live to bring positive change. I wish that I could do something, anything, to bring resolve but sometimes I feel too small to make any tangible change. But, because of you I am reminded how powerful it is just to speak up so I am using my voice to encourage you to keep fighting the fight. Thank you for bringing us hope. Eugene

Thank you Mandy, Seeing your story in the movie has inspired me and renewed my hope. I originally contracted lyme in Bainbridge Ga. in 1985. I was bitten by dozens of ticks and got very sick with a rash. My doctor laughed at me when I suggested lyme. I improved over time, Always knowing inside that I "had" it and thinking that it was over, until 2 years ago when, instead of my wierd symptoms, I got meningitus which put me in the hospital. A few months later I got bells palsy. I was reinfected 6 months ago after picking up two tick nymphs in Wekiva Springs State Park. I went to my pri care with a huge "bull's eye" rash and a tick in hand, and in spite of that, even with positive tests and symptoms was refused a diagnosis. It has not been reported to the CDC. I've been told over and over that there "is no lyme in Florida" and that there is "no such thing as chronic lyme disease". Thus, my insurance is useless, and I've been paying thousands out of pocket to get treatment. It's been a huge strain on my finances and my health. When I'm at my worst, and start to feel sorry for myself, I think of you, and some of the others in the movie, especially the children, and realize how truly fortunate that I am. It could be so much worse. Seeing you step toward recovery fills me with hope and makes me see a bright future when things seem bleak. Again, thank you for sacrificing your privacy, and giving us this window to a positive outcome.

Thank You Mandy, My husband and I just saw the movie. He has had Lyme for 14 years and finally got an appointment with Dr. Donta. Thank you for filming all the things you went thru and how you became better. It gave my husband the reason he needed not to give up seeing how much sicker he could get and then seeing how much you improved. God Bless you and your husband.

I don't really have much to update you on currently, but I will in October (when I hear back from another nursing school); I will be able to give more concrete information in during that time (Oct/Nov). This semester is my last one (Fall 2009)for prerequisites, 19 credits :0( I will be working a little less in order to handle this task. We shall see just how many of those I actually keep! ha ha I am doing well health wise, and I'm working on some natural stuff with Dr. J. Sean is healthy too! As soon as I know something you will, but now I'm just doing the "waiting-game"... xoxo mandy