Lyme Bytes

I wish I had thought of that title, but I didn’t.  There is an actual blog about Lyme Disease, authored by Connie Strasheim, called Lyme Bytes.  It is hugely insightful when dealing with all aspects of Lyme Disease.  In fact, she wrote a book called “Insights into Lyme Disease Treatment” which sits on my nightstand.  This book has given me invaluable knowledge when I’m researching my own treatment.

I haven’t talked about my Lyme Disease, treatment, or my health in a good while.  And frankly, since it consumed me all of last year, it has been nice to not think or write about it lately.  But I did want to give you all an update.  I know I was on many a prayer list this last year, and I am beyond grateful for your encouragement, prayers, and support.

I saw my Lyme specialist 4 weeks ago.  He was floored at my progress.  Basically, since mid-December I’ve been on the same oral antibiotic protocol, with additional herbal supplements and vitamins.  In all, I choke down take about 60 or so pills a day.

This includes 3 different antibiotics, Nystatin to keep the yeast at bay, plus all of the supplements.  Four weeks ago I also started taking Low Dose Naltrexone (3 mg.) to boost my immune system.  This is a very new addition in the treatment of Lyme.  After beginning this medication, I’ve noticed a steady improvement particularly with regard to my range of motion, energy, and pain reduction.

And the wonderful news is that I’m no longer on any pain killers whatsoever.  Save for the occasional Excedrin when my children cause my head to explode.

I’ve regained almost full mobility to my knee.  Stairs are still an issue, but that has more to do with me rebuilding muscle than the Lyme Disease.  I have full use of my right hand and left arm now.  I still feel twinges of the disease, and I know it’s still there.  But it’s really not slowing me down so much.

I’ve come an awfully long way in just a few short months.  Which is very unusual for someone with chronic Lyme Disease, and with as many issues as I have had in the last year.

We’re attributing it to the fact that I began boosting my own immune system with supplements and diet before beginning treatment.  And we just happened to hit on the right combination of oral antibiotics right out of the gate.

No two Lyme patients ever respond the same with identical treatment.  Which is one of the reasons that it is so difficult for the medical community to wrap their collective head around treatment, much less initial diagnosis.

I had a phone meeting with my doctor today.  Cailey was sick, so I stayed home while Fiddledaddy (who was in Orlando on business) sat in for me in my doctor’s office.  It was all really high tech with me on Skype while wearing my vulcan head gear to hear better.

He reviewed all of my recent blood work, and concluded that I am only fighting one additional co-infection, which is a direct result of the Lyme Disease.  It is not unusual to be fighting many co-infections, which can be tricky.  What this means for me is that I’ll be changing my protocol in the next few days, and dropping two of my antibiotics, while adding another, stronger one.

I’m nervous about this, as I don’t want my progress to slow or reverse.  But my doctor will be closely monitoring me.  One rather off-putting side affect of my new antibiotic is that I have to avoid the sun for the next 2 months.

HOW DO YOU AVOID THE SUN IN FLORIDA?

So much for cute little strappy sandals and tube tops.  As if. I’ll still be visiting the water parks with my family.  I’ll be the one draped in a sheet.  And a sombrero.

A small price to pay.  Especially considering what a slave I am to fashion.

Honestly, I catch myself marveling at the fact that I can move from point A to point B with no pain.  What a blessing.  I’m beginning to feel normal again.  Whatever the heck normal is.  🙂

March 22, 2011

21 Responses to Lyme Bytes

  • So glad for the good news. I read your blog daily, but rarely comment. Just wanted you to know I’m lurking and praying in WV!

  • Congratulations on the good news! Will continue to pray with this new treatment in mind that it just continues to get you better.
    Avoiding the sun here? I guess you will have to invest in some really good sunblock! I can tell you that the spray on Coppertone in the blue can works wonderfully. Since using it I never get sunburned on my back at the water parks. Nothing else ever stayed on and I would come home with a horrible sunburn on my back. Now I only get sunburned in the spots my kids miss lol! (Hubby doesn’t “do” waterparks)

  • That’s what I get for typing without my glasses on. Conniw. Sheesh!

  • Thank you for the update. I’m still praying for you, as are MANY, MANY people. 🙂 Isn’t God AMAZING?! I’m so glad you are improving, and I continue to pray for complete healing for you. 🙂

  • Deedee,
    So glad you are feeling better. I will continue to pray that you will successfully fight off this last infection. BTW, just wear really cool sunglasses, and no one will notice you are wearing a sombrero and sheet.

  • Yea! So glad to hear that all your hard work is paying off. Because swallowing 60 pills a day, THAT, my friend, is hard work!

    And definitely do what your doctor says and avoid the sun. Some of those antibiotics will make your skin super sensitive and you can burn badly in only a few minutes.

  • How exciting! I can’t even imagine taking 60 pills a day (I bet you’re one of those awesome people who can swallow several at once), but avoiding the sun? I’m in Texas, and I fully understand that predicament. You could always do the all-black, head-to-toe ninja costume, which is way more mysterious than a sheet and a sombrero.

  • It is just so amazing to hear how well you’re doing! Woohoo! So thankful to God for putting you on the path to healing. : )

  • Thanks for the update, Dee. I’m thrilled (no exaggeration) to hear how well you are doing. Here’s the deal – I’ll continue to pray and YOU continue to blog! God bless.

  • Am rejoicing with you! Will keep you in our prayers. I’ll be using you tonight in my prayer chain prayers. We see lots of improvements and healings – glad to add another one!

    Praise God for His marvelous works!!! Keep getting better and may you be Lyme-free soon. God bless you and the whole fiddleclan.

  • I hope you had a little conversation with the doctor that told you it was all in your head. If not for your own satisfaction, you should do it for the sake of anyone else with lime that might stumble his way.

    Avoid sun here? I guess you could go Goth for a few months. The black clothes and heavy makeup should help a little. ROTFLOL as I picture the AWANA moms viewing that one.

  • Oops…Lyme not lime.

  • What great news and a great report! I’m so happy for you and just wear one of those hats with the umbuella attached to it. And by all means take a photo for us please!

  • Fantastic News! I knew you must be doing better… With all the getting around you have been doing… I will keep you in my prayers as your meds change… you go gilr!!! 🙂

  • What wonderful news! I’m thanking God with you and trusting that your recovery will continue to amaze!

  • Yay! And prayers said (and will continue to be said) that you continue on the path to full healing. As for staying out of the sun in Florida . . . um, you have my prayers on that one, too. (Not much of a problem here in Minnesota.) If it helps, there is a website called coolibar.com that sells sun protection clothing that is NOT hideous. (and no, I don’t get a kickback from them . . . but I think I should 🙂 )

    Good luck and keep us posted!

  • Awesome news!! Praying for continued recovery. Please pray for my daughter. She is 10 and had a tick removed at the doc today. (We figure it has been there since Sat. without my knowledge.) Due to the symptoms she is having they are going ahead with treatment for Lymes and Rocky Mtn Spotted Fever. (She has a bulls eye rash around the area and a low grade fever.) Thanks for your prayers in advance!

  • Praising God and praying for your continued and complete healing, my friend 🙂

  • Praise God for such a great update! I appreciate that you’ve been so open about your difficulties, giving a face to Lyme disease and a voice of hope regarding successful treatment. So pleased for you, DeeDee.

  • Yay! I am SO glad to get a good update after all the not-so-good ones. Yipppeee!!!

  • This is the best news. Our God is good and faithful… Rejoicing with you!