The Dark Side of Lyme Disease

50

sleeping beautiesI wasn’t surprised when I eventually found out I had contracted Lyme Disease.  I love to hike in the woods and I love dogs.  And, to make matters worse, I’m one of those “bad” dog owners who has always let the 4-legged ones share my bed.  I have pulled hundreds of ticks off various parts of my body over the years.  So, like I said, I wasn’t surprised when I found out I had Lyme Disease.  What did surprise me was how little most doctors know about this disease and how little they seem to care.

I wrote this letter to my doctor last week.  I think it tells most of my story:

Dear Dr. K: 

 It’s taken me a long time to write this email to you and I’m sorry it’s long overdue.

I started having weird health problems about 8 years ago.  I’ve always been an athlete (heptathalon, basketball, volleyball, and golf) but found I was able to do less and less over time.  If I did 10 push-ups, I couldn’t bend my elbows without excruciating pain the next week.  I was exhausted all the time, had waves of horrible anxiety and my brain was foggy.  During one visit with one of your physician assistants I tried to ask her about my symptoms.  She said she didn’t have time to hear my “complaints” and that my appointment was an “emergency” appointment for a sinus infection.

About 2 years ago, I developed a high fever that lasted for 3 days.  After my fever broke, I spent the next 3 days sleeping 23 hours per day, getting up long enough to take a shower and eat a little something.  I was just starting to feel alive again until I woke up in debilitating, excruciating pain in every joint in my body around midnight.  It was then I realized I must have Lyme Disease.  I forced myself to go back to sleep knowing I would have to go to the doctor when I got up.  That morning, it took me 20 minutes just to pry my hands open, an hour to get to the bathroom and another hour to make it down my stairs.  Even though I live only 5 blocks from your office, I had to take a cab because I couldn’t walk.  

You were not available and I saw another doctor in your practice who said I probably had Lyme Disease and prescribed Doxycycline.  That day, I also presented with a full body rash.Tick

I went home thinking I would take the medicine and feel better in 3 weeks.  That didn’t happen. The pain and exhaustion were unbelievable.  Every morning, my husband carried me into the bathroom.  It was horrible.

I received the results of my blood test from you that said “You tested negative for Lyme Disease.  Your B 12 levels are a bit low, which may be causing joint aches.  If your joints still hurt in 2 months, contact a rheumatologist.”

I was disappointed by your reply. 

With one day left of the antibiotics, I was still in horrific pain and felt completely drained. I didn’t understand how I could take these strong meds and still be suffering so much.  To make matters worse, I was not sleeping well because every time I moved, I screamed out in pain (mostly in my head but sometimes out loud).  After reading a little bit about Lyme Disease, I convinced the doctor who treated me to prescribe another 3 weeks of Doxycycline thinking that would do the trick.  I was improving, but very, very slowly.

To make a long story short, I finally went to a Lyme Literate Medical Doctror (LLMD) who sent my blood work to two labs that are known as the best for detecting Lyme Disease (the ones I had requested you to send my blood).  Both labs showed that I tested positive not only for Lyme Disease, but I was the lucky recipient of 3 other diseases: Bartonella, Anaplasmosis and Ehrlichia. I began treatment for these diseases with a cocktail of antibiotics.  The first few weeks were hell, but about 3 months into it I started to feel inklings of what I used to feel like when I was healthy.  Plus, I stopped waking up every 20 minutes in pain at night.

It wasn’t until my doctor decided to treat me for Babesia (my 5th tick-bourne disease) that I really started to feel good again.  Although I had not tested positive for Babesia, I had a lot of the symptoms associated with it.

During those 2 years, I endured a tremendous amount of pain.  But the pain wasn’t the worst part.  My energy and will to live diminished to the point of having constant thoughts of suicide (Lyme attacks the brain and causes a mild inflammation which can cause/mimic severe depression). An acupuncturist  said to me, “I don’t want to scare you, but your Chi is dead”.  It didn’t surprise me because that’s exactly how I felt–dead inside.  My mom watched her outgoing daughter who loved to socialize become an introvert who couldn’t muster the energy to go out to dinner with friends.  My husband watched the strong, powerful woman he fell in love with turn into a weak, miserable human being.

I tell you all of this not because I’m angry, but I am hoping that you would want to know.  I am 90% better.  I am getting really strong again. I am enjoying my life and feeling great. And while I’m not completely cured, I am thrilled to know that I can feel good again–mentally and physically.

I look forward to hearing your thoughts.

why-cant-i-get-better-horowitz-book-cover-red-ISBN-13-978-1-250-01940-0It is my hopes that my former doctor not only reads my letter and takes the time to respond, but decides to educate herself about this horrible disease.  There are a lot of people getting sicker and sicker from it.  Isn’t it time they get the help they need?

And you should know that only a small percentage of people get the classic “bulls-eye”rash.  Listen to your symptoms and take charge of your health.

If you or anyone you know has suffered from Lyme Disease or any of the other tick-bourne illnesses, please share your story with us.

 

Stay well,

Molly

P.S.  I would like to thank Amy Million, MD who graciously offered to help me figure out what was wrong prior to my diagnoses.  And thank you to Heidi Wittels, MD who has spent hours working with me through this journey.

50 Comments:

  • Karen Hamm
    March 11, 2014

    Wow Molly, thank you for posting this! This is very helpful information.
    I am so sorry you had to go through this. I am so glad your are better.

    • March 11, 2014

      Thanks Karen. I appreciate you taking the time to comment 🙂

  • Joanne Jones
    March 11, 2014

    You’ve been the impetus for Nelson to get the help he’s needed. It’s a slow road back to almost being normal again for him. Thanks.
    Your, SIL

    • March 11, 2014

      Thanks Joanne. I am so happy that Nelson is finally getting help and seeing progress. It’s a maddening disease and very scary. Three steps forward, one step back…but at least that means you keep going in the right direction…

  • Jennifer Jacobs
    March 11, 2014

    Oh Molly, I’m so sorry you had to go through this terrible ordeal for so long! So good to read you have found someone who will listen and get you back to your usual awesome, outgoing self! Thanks for posting this information. I’m definitely more vigilant about looking for ticks with my family now that we are back in the northeast. Good to know we should see a LLMD should we ever need it. Stay well.

    • March 11, 2014

      Thanks Jennifer. I appreciate your comment 🙂 Glad to know I’m almost “back” but sad to know so many others are still suffering. Spread the word…xo

  • Sue
    March 11, 2014

    Molly what a raw and honest account of what you went through. A brave story and even braver to share. Thank god you are getting better and also that you had the support from family, when you didn’t have it from your own Dr. Lesson for all…don’t accept what your Dr says when you know there is something wrong. We all know our bodies better than any Dr…if something doesn’t seem “right” it usually isn’t…continue to get better Molly. I’m so sorry you had to go through so much! I’m sure your beautiful words will give people courage to keep questioning (any supposed medical professional) as we have all been brought up to think that Dr knows best.. Obviously not the case..Watch out world Molly is back!! May you be blessed with great health and only joyous times from now on. Thank you again for sharing. SdL

    • March 11, 2014

      Sue: Thank you for your beautiful words. It’s a scary disease and as you know, it is found in Australia too. Some people think it’s only in the Northeast United States but it’s found all over the world. Hopefully, it will be given more attention. But sadly, the only way for this to happen is for people to keep getting sick. At least we are hopeful 🙂 xo

  • Scott Costello
    March 11, 2014

    Molly,

    I saw this when John Spence shared it on facebook. I have known quite a few people who have contracted Lyme and all of them spent a considerable amount of time in pain and suffering until it was finally diagnosed. It is amazing to me how so many can be experts on some of the diseases but others like Lyme are so hard to diagnose.

    I applaud you for standing strong and fighting the battle to survive and overcome. You are an inspiration.

    • March 11, 2014

      Wow. Scott, thank you for your kind words. I am a bit speechless which doesn’t happen often 🙂 All of us “Lymies” appreciate you and your understanding of our disease…which many people don’t. Thank you…

  • March 12, 2014

    Molly, It is an understatement that you are an outgoing, happy, wonderful person. You are truly a survivor, I hope that your “Chi” is back and stays with you forever, Keep smiling. As for your Doctor, it is another profession. There are great ones who will try and help at any cost, then there are others that just put their time in and go home, not realizing or caring that each person that they see depend upon them for more than they could possibly know. I’m sorry you had the second type of doctor!

    • March 12, 2014

      Thank you Joe…you are too nice 🙂 I just hope other people don’t “give in” and continue to live in such an unhealthy state. People are being misdiagnosed every day. Others suffer in silence. Some take anti-inflammatory meds to control pain while others take meds for depression not knowing that antibiotics could change everything. Thanks for sharing and thanks again for taking time to comment.

  • Karen Rhodenizer
    March 12, 2014

    Oh Mo-Po — very well written and I’m happy you took the time to let your doc know what her carelessness put you through. But so sorry you’ve suffered the way you have. And SO like you to want to share what you’ve learned and save others from going through the same torturous illness the way you did.

    • March 12, 2014

      Thank you Guidi. You made me cry…once again. Love you.

  • Kimball Kraus
    March 12, 2014

    Molly…Jim and I knew you had struggled mightily through your Lyme ordeal, but did not understand the full extent of your suffering until we both read this gripping account of the anguish you experienced prior to getting the help you needed. We are so sorry that you had to endure so much suffering! And we are so grateful that you finally found the help you needed and are on the road to recovery! Although your body felt weak and miserable, you still had the strength and will to persevere and get the answers you needed. Even in your worst suffering, you were, deep down, still strong and powerful. Nothing, including Lyme, can take that away from you! We love you. Jim and Kimball

    • March 12, 2014

      Kimball: Now YOU are making me cry! The second time today and it’ only 10am. Thanks for your message. I know a lot of people up your way suffer from Lyme Disease and/or many of the awful co-infections. I hope this urges at least one person to make the decision to get help..and find the right doctor–one who is willing to wade through pages and pages of tests and research to find the right combination of drugs and herbs to start the cure. Love you too…and thanks again for reaching out.

  • March 12, 2014

    Thanks for sharing your terrifying story Molly. I remember pulling deer ticks off my kids and husband after a long ago hike in the Florida woods. They were so small and hard to even see. I have shared your story on facebook and twitter. I hope you continue to improve and will be thinking of you!

    • March 12, 2014

      Thanks Kathy. I am glad no one in your family contracted the disease. Stay well and thank you so much for sharing 🙂

  • Laurie Glass
    March 12, 2014

    Molly you are a warrior. So proud of you for taking the time to help educate this Physician so that perhaps she can prevent this mistake with future patients. You are a shining light- so thankful you are on the road to recovery!

    • March 12, 2014

      Hey Laurie: You guys are warriors too–we do it when we have too. It hasn’t been easy in your house either but your family is strong. Thanks for always being there for me and for loving me SO MUCH all these years…

  • Dave Miller
    March 12, 2014

    Molly,
    My Dad suffered through terrible fevers which occurred every 10 days for about a decade when he was in his 30s. This was in the 60s and physicians were sure he had some form of cancer. Finally a Yale doctor suggested a low fat diet since they just couldn’t figure out what was causing the fevers. The fevers did go away over a six month period, however he suffered terrible joint problems resulting in replacement of both knees and hips. I have always believed he contracted some form of tick borne disease and your post makes me feel even more so.

    Thank you for sharing your story and so glad you are nearing full recovery.

    • March 12, 2014

      David, this is so sad to hear. I’m sorry they never figured out what was wrong with your dad. To think that he had to live like that…NOT KNOWING what was wrong…is just horrible. The more we take the time to share information, the more people we can help. Thank you for taking the time to comment…I really appreciate it.

  • Jen
    March 12, 2014

    Hugs to you Molly!

    • March 12, 2014

      Thanks Jen! I miss you…

  • Vicki
    March 12, 2014

    Oh Molly, it is so great to have my fun loving, kinda crazy, zany, and sexy friend back! As a PT it was so hard to hear and watch what you were going through and not be able to help. Let’s hope the doctor actually reads the letter and we all get to read the reply, and know by your bravery other people will be healed sooner.

    • March 12, 2014

      Thanks Vicki. I have not heard back from my doctor yet but am still hopeful. I know you “missed me” for a number of years because a big part of me was gone. I just hope I can stay healthy and urge others to seek help so they can feel good again too. Love you.

  • Large Barge
    March 12, 2014

    Bittersweet to ride with you this weekend and see how far you have come and how far you have had to come. This disease cannot keep a strong woman down. Hugs to you and to Frank. LB

    • March 13, 2014

      Thank you LB. Love you.

  • Ellen
    March 14, 2014

    Molly, I am so glad you wrote to your former doctor. I remember very well how bad things were for you and how helpless you felt when the doctor told you that you just needed some B-12.

    You have been through a lot and I am really proud of you and happy to see you coming out the other side stronger than ever. I hope you never have to go through any of that again and like to think that you will be helping someone else that might be just starting their journey with Lyme Disease.

    xo
    E

    • March 15, 2014

      Thank you Ellen…and thank you for being there when I needed you! Love you.

  • Joan meyrowitz
    March 18, 2014

    Molly-it’s a shame that your Doctor didn’t know you better. There is no way that you could have those symptoms without something terrible being wrong. This is the first I have heard about it. There is a Doctor in Haile that tells everyone that they have Lyme- strange. Did I miss you at GHFC. Are you sitting? I am doing the X force program. Are you familiar with it? Are you still coming down here and if so, when-

    • March 18, 2014

      Hi Joan: Thanks for your message. I have heard there is a doctor in Haile who is a Lyme specialist. She is not telling “everyone” they have Lyme; she has the additional training that helps her diagnose this horrible disease. A lot of people suffer for a long time thinking they have rheumatoid arthritis, Lupus, MS or other diseases. People go to her because they are tired of being sick and hoping someone will take the time to find out what is wrong with them. Sadly, there are a lot of people who have Lyme Disease and that number will continue to grow unless something changes.

  • MaryAnne Potter
    March 20, 2014

    Hi Molly! You know, when I saw you last month, I had such mixed feelings! I knew you didn’t look healthy, but our conversation was fun and positive and forward looking. Now I realize, sheepishly, that’s because we were talking about how I was!! I’m sorry for your horrible ordeal and, more so, I’m happy for you that you have been recovering and getting healthy. I have a friend here in the burbs that has Lyme and has been RELENTLESS in her research even in spite of those who scoffed at her.
    I loved the comment earlier that even this couldn’t put a powerful gal like you down. You are an inspiration.
    Next year, I want to have that beer with you in FLA!!!
    See you soon,
    MaryAnne

    • March 20, 2014

      Hi MaryAnne: Oh my. If you think I looked unhealthy last month, you should have seen me 2 years ago! My neighbors would see me walking the dogs and say “Oh Molly…are you okay? I can walk the dogs for you…just call me”
      I would LOVE to have a beer with you in Florida OR Philly OR anywhere with you…anytime 🙂 Thanks for taking the time to comment…

  • March 24, 2014

    And so……..did your former doctor ever reply? I’m betting not. I’ll never understand why they are choosing to continue to wear that stupid blindfold!

    • March 24, 2014

      I still have not heard anything from my doctor. Kind of surprising…no?

  • Miko
    September 26, 2014

    Molly!! Oh Sweetie! I am SO, SO shocked and saddened to read your story about tick borne illness. About a year ago I read this article

    http://www.newyorker.com/magazine/2013/07/01/the-lyme-wars

    in the New Yorker. It’s probably not going to tell YOU anything new, but I’m sure that sharing it here will help others. It’s very long, and it’s full of a lot of science, it’s excellent. If you don’t have time to read it (visitors to this site) it boils down to this – Lyme’s Disease hides and is difficult to diagnose, but worse, the current accepted “cures” do not always work. As if that’s not bad enough, very, very few Doctors are aware of the complexity involved in identifying and treating Lyme’s, and they also don’t know that the other pathogens that even non-deer ticks harbor can be equally harmful.

    Dear dear Molly, you an icon of health, happiness, fitness and knowledge. We all wish the very, very best for you. Please also try this product:
    https://www.sites.google.com/site/healwithseeds/home
    This is a friend of mine, her name is Dottie Gannotti. She is a straight shooter, not a snake-oil saleswoman. You actually would both get along famously. She works for God. I have been on two packets of Rain Soul daily for a few months now, and the throbbing osteoarthritis pain in these 51 yr old hands is gone, as is the extremely debilitating tibial collateral ligament pain I had in my right knee – also gone. I don’t feel stiff any more, I don’t throb or hurt. Rain Soul is good stuff. God Bless you Molly. I hope you feel as good as you look!!!!!

    • September 29, 2014

      Thank you so much for taking the time to provide more information on this horrible disease. I will give the Rain Soul a try…as we “Lymies” will try just about anything to get relief.

      Stay well and please stay away from ticks 🙂 Wishing you all the best…

  • October 7, 2014

    Molly, I stumbled upon your website after reading an article that you authored regarding why women should lift weights. I am so glad I did. If I tried to write my entire story, it would become a book. I have Lyme. I know I do, as does my internal medicine doctor. And I truly believe that he would do anything he could to help me get over this horrible disease; anything that is, as long as I asked specifically for him to do something and then provide him with logical reasons for wanting whatever it is I have asked for from him. The problem is that he, like many other doctors do not understand Lyme and how insidious the disease is, or how it can mask itself and look like other things. It saddens me that although he helps in the ways I have asked, it is up to me to ask.
    He was the one who figured out I had Lyme in the first place. But after he made the initial diagnosis, he said one of the common things that I have heard (from other Lymies), “you need to go and see either a rheumatologist or an infectious disease doctor.
    I didn’t follow his advice and it is at that my story branches out and gets complicated and would turn into that book I mentioned earlier. At one point in my life, I
    was not only a writer, I was a technical writer and was good at it. Now I know that when I write I either go off on tangents, write long run-on sentences, or just babble on repeating things I have said without ever getting to my point. Since I do not want any of that to happen, I am going to change direction at this point. (Guess that means a new paragraph is in order so here gores…..)
    I know you don’t know me, just as I don’t know you. And while I would normally be more then happy to share my story and try to whistle it down to a short story rather then a novel, I don’t have the energy to do that. Unfortunately, on top of everything else I am living with, earlier this evening I found out that my daughter’s uncle (my ex-brother-in-law) passed away suddenly and for an as of yet unknown cause. His death put me into quite a tailspin. He was my age (2 weeks younger) and I am only turning 54 next week. Not his time to die. Anyway, before I digress too much, I am now exhausted emotionally and physically. You understand the emotional stuff since I just told you what happened, and I suppose you understand the physical exhaustion as well. You lived it. Because I feel like my stumbling upon your website is a small, maybe even quite large miracle, I want to go out on a limb here and ask something of you. While there is a chance you won’t do it, I am thinking that you are a compassionate individual and am going to take a risk and ask if you would contact me via my email (k9loverkjk@gmail.com) and send me a secure enough, private email address to which I could email you and send my phone number at that point you could call me and we could actually talk amid I would be able to tell you my full story at that point. I promise that if you do contact me, prior to our phone convo, I would write up a chronological list of built points that cover everything that my story entails. In that way, it is possible that I might be able to pick your brain to try and figure out what I might do to help myself get well and at least symptom free from the Lyme disease.
    Thank you so very much for your time and attention to my story. I appreciate anything and everything you might be able to do for me,
    Sincerely yours,
    Kathi

    • October 7, 2014

      Hi Kathi- I am so sorry to hear you have Lyme. I am on holiday out of the country but promise to email you when I return. Stay well and stay strong. Warmest regards…

  • Annmarie
    August 4, 2015

    rIm convinced my daughter has Babesia and other tick bourne illness. She has been diagnosed with Lyme three times over the past 7 years. The last positive Lyme test was 4/30/15 After 4 weeks of Doxy and 2 qeeks of amox she’s still suffering terribly. Today I contaced Dr Wittels’ office. Is that who sent your lab work to the right places? I have read Dr Horowitz book and watched his seminars on Lyme on Youtube. He isn’t taking new patients at this time. We’ve been to many docs and feel frustrated.

    • Annmarie
      August 4, 2015

      I just noticed all of my typos!!!! I’m so overwhelmed I can’t even spell correctly anymore 😉

      • August 4, 2015

        No worries…just keep fighting!

    • August 4, 2015

      I’m so sorry to hear your daughter is suffering. Yes, my doctor is Heidi Wittels…she has been great. She really, really cares about her patients and she has helped me so much. Please let me know how your daughter progresses…I hope they figure out if she is suffering from any tick co-infections. As you know, they are common (sadly). Sending lots of love…

      • Annmarie
        August 8, 2015

        Thank you Molly! I’m convinced she’s been suffering from a Bb that has gone to the cystic form and probably a coinfection for a long time. She was diagnosed with Lyme at age 8, 10, and 17. I’m so worried that its now been too long. Since I know she was never given the right treatment. Dr Horowitz has cured a friend of mine but he’s not taking new patients. Do you know if Dr Wittels has read his book? My daughter’s appt is Sept 10th and it can’t some soon enough!

        • August 9, 2015

          Yes, Dr. Wittels has read his book. Your daughter will be in good hands…Please stay in touch Annmarie.

  • Theresa Rooney
    August 9, 2016

    Hi Molly,

    Thank you for sharing your story! I am in the process of getting an appointment with Dr Wittles. She was highly recommended by a Lyme support group I just attended. I am just wondering if she is the same Dr you are referring to in Pennsylvania?

    I have been suffering with unusual symptoms, many that you have described, for many years. My doctor is tired of listening to me. I was just starting to feel like that this was my new life and had better get used to it, until my son started having similar symptoms. I started looking more aggressively into it and Lyme kept coming up. I know if we do have it, which I am pretty sure we do, it will be a long road to regaining our good health. We already have changed our diet, have been taking supplements and cleansing, to hopefully build up our systems. I am ready to take this on. I am worried that it will be much harder for a 10 year old boy to do the same. I know that Dr witless doesn’t see children. I was wondering if you knew of any doctors who do.

    Wishing you continued good health on your journey!
    Theresa

    • August 9, 2016

      Hi Theresa: I’m so sorry to hear you and your son are suffering. I am surprised that Dr. Wittels is no longer treating children. I thought she did. Perhaps she can give you a solid referral. The earlier you start treatment the better. And look into pulsing antibiotics 5 days on, 5 days off, and adding Stevia (which has been shown to kill all three forms of Lyme. These two things helped me tremendously. Please stay in touch 🙂

  • Lauren
    November 20, 2016

    Hi Molly,
    I’m reaching out because, to put it simply, I need help. Despite 2 positive Lyme tests and recurring, bizarre symptoms over the last decade, I’m having a hard time finding a doctor willing to believe in Lyme. I found your site when looking for information on Dr. Heidi Wittels. Would you be willing to share with me your experience with her? I saw another LLMD who seemed to just want to take my money. Anything you are willing to share, I’m all ears. I’m desperate for a glimmer of hope at this point.

    Thanks for sharing your story. I’m happy to hear that you have recovered from this terrible disease. Thanks for reading:)

    • November 21, 2016

      Hi Lauren: I’m so sorry to hear of your suffering. I will email you and we can continue the conversation there. Stay positive…

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