It’s been a LONG summer. Β Sure, it’s been hotter than usual. but that’s not the problem. Β I’ve been in significant pain since June and no one knows why. Β I can take the pain; I just want to know what’s causing it so I can figure out how to beat it.
It all started with a fever that lasted about 3 days. Β I didn’t have any other symptoms–just the usual aches and pains that accompany a high fever. Β The next 3 days, I just slept. Β Even though my fever was gone, I simply couldn’t wake up. Β On the 7th day, I went to sleep thinking I was finally getting over my “bug” only to wake up an hour later in excruciating pain in every single joint in my body. Β I couldn’t straighten out my arms or legs. Β I couldn’t open my hands. Β Getting out of bed was a serious challenge.
I made it to the doctor that morningΒ and as I sat in the examination room, I noticed a rash all over my body. Β Lovely. Β When the doctor asked me to sit on the exam table, I honestly didn’t think I could make it across the room. Β He thought I had contracted Lyme Disease (which is fairly common here in the Northeast) and prescribed a 3 week course of super-strong antibiotics.
After 5 days of Doxycycline, the intensity of the pain lessened and I started feeling a little better. I could move easier but still had a LOT of pain (especially at night) and I simply had NO energy. When the antibiotics were gone, I went back to the doctor for more tests (which all came back negative for Lyme Disease and Lyme co-infections) and another round of antibiotics. Β After ruling out Rheumatoid Arthritis and Lyme Disease, we still don’t know what’s wrong other than slightly low levels of Vitamin B12. Β I don’t think that causes a fever and the kind of pain I’ve been experiencing.
Thirteen weeks later, I am still not well. Β I feel like my life force is slowly draining out of me. Β To be honest, I am depressed. Β I am supposed lift YOU up, but today I can only share my struggles with you and hope you can offer me the “missing” piece of advice or special words of encouragement.
Since giving up is not an option, what should I do? Β I am putting myself in your hands.
With Gratitude,
Molly
Girl – you are always an inspiration! Just know that you are great, and “this too shall pass…”. You will be better soon, and this will only be something that made you stronger in the end. Keep that pretty smile on your face :). xo
Thanks Sarah. I look forward to seeing you this weekend in Toronto at the best fitness conference in the world π
Hey,
I was convinced you had Lyme Disease and now it’s sounds like it’s something else. I can’t help with the diagnosis, but I will keep my eyes and ears open for any info out there on this kind of thing. I will also keep you in my prayers. Though I can’t prove it, I believe strongly in its power.
Thanks Joanne. I am hoping someone will point out something that I’m missing…you never know. Hope to see you soon…
Have your thyroid checked right away if you haven’t already.
My thyroid is fine. They checked that. Thanks Susan!
Dear Molly,
hope you are feeling better and that you find the answer to this mystery.
Thanks Lisbet. Just spoke with a friend who has Lyme and she said my symptoms were identical to hers and that her tests all came back negative. Will keep researching and doing everything I can….thanks.
Hello Molly,
I hope you have been able to find answers to this illness and hope you are truly feeling better. Please keep us posted. I so look forward to reading your articles and recipes.
Thank you for your words of encouragement Henrietta. I will keep you posted!
I’m so sorry to hear this, Molly. The Lyme Disease test isn’t all that accurate so you may well have had it. What you may have now is Post Lyme Syndrome. Check out this info from the CDC. http://www.cdc.gov/lyme/postLDS/index.html
I’ll keep you in my prayers, Foley sister!
Thanks Denise. I will keep going until I figure out what’s going on. Thanks for your kind words…
Molly, here in Dallas I see a lot of people with fibromyalgia. I work in the insurance industry and see a lot of medical histories…Hope you are feeling better soon.
Hi Sonya:
Thanks for your comment. I’m very familiar with Fibromyalgia as we treated hundreds of women who had it when I ran our women’s-only physical therapy clinic. I do not have Fibromyalgia–that I am sure of. My problems started with high fever and attacked all the joints in my body. My muscles are fine and I am sleeping well. Thanks for reaching out!
Oh sweetie! I had no idea. Have you been tested for lupus? That was the first thing that popped into my mind as it’s symptoms are fevers, exhaustion and joint pain. http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnunderstanding.aspx?articleid=2235&zoneid=523
Sending love and prayers of healing your way.
Hi Julie: I was tested for various auto-immune diseases and they came back negative. My energy is almost back to normal…I just still have a lot of pain in joints all over my body. Thanks for your healing energy!
Not Lymes! Wow I thought it was. I would keep trying different doctors. Maybe one of them has had a patient with similar symptons. Hope you find an answer soon!
They didn’t say it wasn’t Lyme Disease–they just couldn’t confirm that it is. I have an appointment with a Lyme specialist at the end of September to find out for sure. Thank you…
Molly, you truly are an inspiration and rather than placing yourself in our hands, please put yourself in God’s hands. I pray that He will carry you through this difficult time, that He will provide the medical community with the wisdom to find the answer and the ability to resolve the issues quickly. I know He is always with us, that quitting is never an option, and that He will carry you through this. You are in my prayers for a speedy recovery. Blessings always, Tawn
Thank you for your kind words…I really appreciate you taking the time to write…
Hi Molly,
I hope what ever it is… you get better soon. How long did the rash last for and what did it look like? I have been through something similar. Two years ago the same, same exact thing happened to me! I had the same exact symptoms. They ran all blood tests and everything came back within normal ranges and negative and they never figured out what it was. It took about a year and half to get my energy level back to normal and for the pain to subside. I hope and pray it doesn’t take anywhere near that long for you to get better or for them to figure out what it is.
Hi Teresa:
Did you ever figure out what was wrong? How are you feeling now? The rash was all over my body (not a bullseye) and went away after the first day of the antibiotics. I feel about 70% better…hoping to continue to get better each week.
Thanks for your comments. I will keep you posted.
Oh Molly! So sorry to read you are in so much pain. My dad had similar issues with lyme disease related symptoms but no definite diagnosis. It took him months to feel better and almost a year to feel 100% again. I hope the Lyme specialist has more answers for you. Have you and your doctor ruled out MS?
Hi Jennifer: I keep hearing that same story over and over again. I will try to be patient and keep in mind it could take a long time for the pain to go away…I am about 70 % better. Thank you!
Molly:
For those of us that know you intimately we have seen what you have described. You have run into so many walls in the last couple of months. We are hurting for you, but you have to have faith that there is a light at the end of the tunnerl. Love is so important, especially at times like these, so please know that you are surrounded by our love.
Thanks Mama! It was great having you here…I’ve been smiling ever since. I love you.
I wish you the best in your quest for better health. I suggest you be very proactive in dealing with your doctors. Hopefully you are seeing a specialist as only a Lyme disease specialist will run the proper tests to diagnose if this is what you actually have. You may need to be on super antibiotics for a really long time before feeling yourself again. Good luck! I too am dealing with health issues and find that if I ask the right questions of the doctor, it helps him to order the proper tests to get to the right diagnosis and if he is stumped, I ask him for a referral to a specialist.
Good luck to you Susan. It sounds like you are very familiar with Lyme Disease. I hope you don’t have it!! Please stay in touch…I appreciate your comments.
Hi Molly,
I’m sorry to here that. Everything that you are saying sounds so familiar. I also saw many different doctors my hands would just cripple up and I would fall when I would try to walk. Then it started to affect my stomach. I love food but after I ate or drank I would get very bad abdominal pain. After so many visits to the doctors and the hospitals I was finally diagnosed with colitis. I am Vitamin deficient in B12 and D. They managed to raise my vitamin level and I thought everything was getting better but now after 3 years it is slowly getting worse again.
Shelly: I’m sorry to hear you are starting to relapse. Have you gotten your B12 and D levels checked recently? I wish you all the luck in getting better and I thank you for taking the time to comment.
Molly, So sorry you are going through this very frustrating experience. Maybe consider an integrative medical practice MD. that combines eastern and western approaches. Just a thought…
Hi Kim:
With everything going on in your life, I have to thank you for taking the time to write. I spoke with my integrative medicine doctor and he “doesn’t do Lyme” but wondered out loud why my platelets were so low. He said it’s too hard to figure out so he doesn’t deal with Lyme. I am getting better and just know I’ll be feeling good again soon. Wishing the same for Jay…sending lots of love to you both.
I am so sorry I didn’t ask how how you were last night when we talked. Here you are dealing with your own stuff and you were so 100% there for me. You are a true friend. Wish I could help. I am sending you an email which strangely enough came immediately after yours and has some interesting info on immune system. Love you.
Thanks Vicki: We all have challenges but thankfully, we have each other. Love you too… Molly
Molly, my thoughts and prayers are with you. It was great to see you over the weekend! Your spirit and energy are amazing inspite of your pain. As you know my sister-in-law was mis-diagnosed for 3 years for everything from fibromylagia to depression to menopause to MS. Then a new doc sent her bloodwork to a lab in California where her lyme test finally showed up as positive, stage III Lymes disease. She could not walk in a straight line. She could not drive for 4 years. She had to be on super potent antibiotics that were administered directly into her heart. Thank God she is on the mends. You too will overcome this. Each of us have faith in you Molly! XoxoLynne
Thanks Lynne. It was so great to see you (and present with you!!) in Toronto. I have an appointment with a Lyme specialist at the end of September…or hopefully sooner. I am on a cancellation list. The funny thing is that it takes on average about 10 months to get in to see one. It’s so bizarre. I hope your sister-in-law gets back to normal soon. I will keep you posted…Molly
Almost sounds like the bird flu or some type of poisoning.
Hadn’t thought of that π Let’s hope it’s not that…maybe my husband is trying to get rid of me! π Thanks for taking the time to comment…
Oh, Molly. I’m so sorry you have been so miserable for so long. As you can see from these posts, you are surrounded by love. I will be praying for you and I know you will have the strength to get through this horrible time. Love you lots, Pat
Hi Pat: I’m not that bad anymore. I was in horrible pain for the first three days…but after that, I have been slowly getting better. About 70% of my pain is better and I feel like my energy is almost back to normal on most days. Some days I just crash but think that is probably normal.
I appreciate your comments and, yes, I can feel the love and it really helps. Molly
Dear Molly, I am already focusing Energy for you! I am reminded of my allergic reaction to Boniva, where I was “crippled and crunched upin every joint” overnight. Thank God for acupuncture as it reversed the symptoms. I am adding HealingTouch to our sailing itinerary! Rest well.
Love, Tina
Thanks Tina. I WILL HAPPILY RECEIVE SOME HEALING TOUCH ON OUR SAILING TRIP! XO
Shingles?
Hi Stephanie:
I’m familiar with shingles and I am thankful it is not that!! That is more painful than what I’m experiencing now. But I appreciate you taking the time and effort to write. Thank you. Molly
Molly, our darling girl! I am heartsick that you are still feeling so unwell and not getting answers yet. Based on the symptoms of my friends who have had Lyme, it sounds very much like that’s the problem. Have you tried getting in to see Kenneth Bock in Rhinebeck, NY? I’ve heard he is outstanding. Meanwhile, keep calling about the cancellation list. Don’t give up- you are so loved and you will be well again, soon! I know it! Much love, Kimball
Thanks Kimball. Everyone says it sounds like Lyme…I am hoping it is not…but at this point, I would just like to know so I can move forward. The GOOD news is that I’ve gotten most of my energy back and am starting to feel like my old self. The joints still hurt a lot at night, but not too bad during the day when I am moving around. So, I am very hopeful I will continue to get better. Thanks for reaching out…Love, Molly
I am so sorry to hear of your illness, I wish I could “figure it out” as you know medicine involves ruling out things and guess work, did they test for the basic chicken pox and measles, rare in Adults but sympyoms can be very severe, there are great Anti-viral meds around now which might help along with plenty of fluids and rest. hope you are better soon !! Love Kathy
Thanks Kathy. They didn’t test for chicken pox or measles. Luckily, I am sleeping well and eating really good food π I hope to be jumping around as usual soon–thanks so much for thinking of me and taking the time to write. Molly
Hope it is not WestNile virus-so many have come down with that recently. Wishing you a diagnosis soon and a complete recovery.
Hi Ginny:
Thanks for your comment. A lot of people are getting really sick this year with the West Nile Virus. I’ve read it’s due to the extremely mild winter that we had last year. Headaches are pretty severe with that and fortunately I am not having any. Thanks for taking the time to comment. Molly
Molly-
May you be on the path of healing and open to
accupuncture, osteopathic manipulation and chiropractic.
Some authentic practitioners who have helped many Philadelphians
on the journey of healing include:
Dave Schiman – Roxborough Community Acupuncture, Heather Olex- Osteopathic Manipulation (Newtown Square) and Bill
Pezzelli – Lyceum Physical Medicine.
Keeping you as a special intention for healing.
Peace and compassion to you.
Hi Sheila: Thank you so much for the names of compassionate healthcare providers and for sending good intentions for healing! I will look them up. Thanks again.
Molly, After reading the many, many responses from all those who love you I truly believe it is Lymes and it needs to run its course!!! I have confidence that the specialist will dx this in September…..you are on the mend girl!
Thanks Lynne…I am confident we will figure it out :). Thanks for writing…Molly
Molly, A friend of ours had all kinds of problems with a Lyme diagnosis. She suggested you try IGenics, a lab that can test more accurately for lyme (even if you come up negative on the test at your doctor’s office). Google the lab and see what you think. Keeping you in my prayers for a speedy recovery!
Thanks Joyce. I have received the names of some good labs but I don’t think my doctor will give me a prescription for it…and I wonder how I could get blood drawn to send? It’s all complicated when your doctor isn’t willing to help figure it out. She told me if my joints still hurt after taking B12 for two months to go to a Rheumatologist. I think that means she’s “done” with me.
Thanks so much for taking the time to comment. I will look into it. Molly
Molly,
If your Dr. isn’t willing to find out what’s wrong by pursuing every avenue, then find a new Dr. who has an open mind and wants to once and for all research the issues and find an answer for you. Remember that medicine is a practice and if Dr’s stop searching, they’re not worth their weight in salt because they’re stagnant. Remember, quitting is NOT an option! You are in my prayers too! π
Thanks for your support and prayers! I have an appointment with another doctor next week (it’s only taken 3 months to get in to see her). I’m hoping for some answers…will keep everyone posted. Thanks again…
Hello Molly,
I have been checking your blog hoping to hear that you were able to find the culprit of your sickness and that your health was back on track. I truly hope that you are well and is behind you. I too have been dealing with a sickness since Jan 2012 and I feel the pain of anyone is going thru something that has no immediate cure.
Take care and best wishes.
Hi Henrietta:
Thank you for your kind message. I did get an appointment with a Lyme specialist and have been waiting to hear the results of all the tests she ordered. I am hoping for some resolution, one way or the other.
What is going on with you? Would you like to share it or send me a private email? You can reach me at Molly@JustYouOnlyBetter.com. Perhaps, through all the reading I’ve done, I may have some insight for you.
Hope you’re feeling better soon….Molly
Thank you all for your comments! You have no idea how you’ve all helped me. I FINALLY received my diagnosis on Friday: I tested POSITIVE for Lyme’s Disease and 3 Co-Infections caused by ticks (Bartonella, Ehrlichia & Anaplasmosis). My doctor has to treat these other diseases/parasites/infections with different meds which will make the Lyme worse for a while…but will hopefully all clear up. At least we know what we’re up against!
If you know anyone who has been diagnosed with Lyme’s Disease (or even worse, may be possibly mis-diagnosed), please free to have them contact me. I will be happy to help them in any way I can. A lot of people have reached out to help me (and many of them were complete strangers)…so please don’t hesitate to send them my way.
With Sincere Gratitude, Molly
Happy Monday Molly, Glad to hear that you are close to finding some resolution and hope it is soon! I have actually been battleing a frozen shoulder since Jan of this year. At first I did not know what was happening to my arm. After 3 doctors I have finally found a Chiropractor that has really help me heal. I have had 3 injections by a pain management doctor and had an MUA procedure which helped me get much of my range of motion back. It has really been a painfull ordeal. I still have a long way to go, but as of now I am not in as much pain as when it first began. Had you heard of this? Thank you.
Hi Henrietta: Yes, frozen shoulders can be difficult to treat. It sounds like you are doing all the right things π You should be good as new next year!! Hopefully, I will be too π Will write a separate comment about my test results I received over the weekend. Thank you so much for your care and concern…and hope your shoulder is pain-free and back in action soon… Stay well and Smile, Molly