Lesson 926 – Lyme Disease – Status Week 14

Note: for those who may be new to this blog due to the Elf in a Coop series – on Thursdays I give on update on my and 5 of my kids status as we all cope with Lyme disease. We live in New Hampshire where Lyme disease is rampant and yet, many in our medical community don’t recognize the disease or know how to properly treat it.

I’m just one voice of the many out there.

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Well I sure wasn’t expecting to be writing this status report. I have been off of all meds now since Thanksgiving and just last week I saw Doc Holiday and told him that I felt great. I even gave him that list that showed all of my symptoms that have disappeared. Terrific we both agreed, even though we sort of shook our heads in realization that treating Lyme disease “just doesn’t work this way.”

Oh but what a difference a week makes.

My leg muscles are twitching (jumping around) again. My tennis elbow is back (and can I just say that it’s not fair to have tennis elbow without at least having played a good game or two of tennis), my shoulder tendonitis is acting up (I know it is because I’m reflexively not using my left hand when I drive), the bottoms of my feet are very sore again and the Achilles tendonitis, although not as sore as it was, is definitely noticeable.

I’ve also noticed that after reading a page in a book, I couldn’t remember what I had read and I’m forgetting things (which really stinks when you are a journalist.)

Lyme? Or gluten? Beer? (both of which I’ve had since stopping the meds.) Again, to be fair, I even have to revisit that ‘ol ghost of all chronic illnesses past – hypochondria? Stress of the holidays?

Am I just too weak?

There could be a million factors, all I know is that for about 2 months, while on medication I had none of these symptoms. Now that I am off of medication, they are starting to come back.

Guess Lyme didn’t work that way after all.

I’m going to wait until after the holidays (New Year’s) and then I’ll talk to Doc Holiday. I’m pretty sure that the answer is to go back on meds but this time, I’ll also add some of the herbal and supplement elements that are popular in the Lyme community. And while I’m certainly willing to go back on the meds, I’d rather wait until after the holidays to start the nausea/vomiting routine. It’s not a lot of fun.

Next time though, I’m not going to be in such a rush to be done. Superwoman, I clearly, am not.

Trust me, all of this is giving me new found respect for those who continue to be treated for Lyme disease. It takes a long time. The meds can be literally gut-wrenching.  There are days when you’ll do anything not to have to take medication. “I feel okay today, maybe I don’t need it.”

I think back to the constant arguments I had with my son when on some days he would refuse to take his meds while he was in high school.

At the time, I had thought he was being stubborn. A child. Didn’t he realize how serious this was?

Now I realize that he was just sick of being sick all the time. It sucks to constantly not feel good, especially when you are a kid.

I had read long ago, that when you are being treated for chronic Lyme (not acute Lyme) that you should expect to be treated for as long as you’ve had the disease. I’m not completely convinced that this is the case, however, it’s pretty clear for me anyway, that when treating my  chronic Lyme, 3 months of treatment is not going to do it.

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Thank you all for your comments and discussion. I read every single reply and find much value in your experiences.

Disclaimer, this is an account of my Lyme symptoms and treatment, it is not intended to be used in the treatment of anyone else’s condition. Please consult and work with your physician if you think you may have Lyme.

Let me know if you have any questions about my Lyme symptoms and/or treatment, if I don’t have the answer, I’ll find someone who does.

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Wendy Thomas writes about the lessons learned while raising children and chickens in New Hampshire. Contact her at Wendy@SimpleThrift.com

Also, join me on Facebook to find out more about the flock (children and chickens) and see some pretty funny chicken jokes, photos of tiny houses, and even a recipe or two.

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5 Comments

Filed under Life Lessons, Lyme Disease, New Hampshire, Personal

5 responses to “Lesson 926 – Lyme Disease – Status Week 14

  1. Sarah

    Hi, Wendy. If it’s any help/consolation. . . (I really appreciate this page even though I have not had lime, many friends have and some are chronic so this is wonderful of you to do.) But, about your joint pains. I am wheat intolerant, and pretty much whenever I eat it, 1,2, or 3 days later, I’ll have pretty intense joint pain that will last up to a week or more. I’ve talked with many other who have similar symptoms. Wheat also aggravates the osteo-arthritis I already have in my hands. I miss breads and pastry tremendously, but how much better I have felt when I stay away from wheat has made it worth it. You might think about an extended wheat-free course along with your lime treatment. (I wonder if wheat would make lime symptoms worse. . .) All the best to you. Get well-er! –sarah

    • Wendy Thomas

      Sarah,

      Thanks for your comments. I have the feeling that going back on wheat (and beer even though it wasn’t a lot) is certainly aggravating my symptoms. I had previously noticed that when I drank beer, my knees would feel worse the next day (you’d think that that would be enough to keep me off of it.)

      And I’ve long noticed that when I eat dairy, my throat gets very “Phlegmy”

      There’s enough incentive now for me to go off of wheat and dairy indefinitely (well, after the holidays because I hadn’t planned for this, but I can certainly keep it to a lower level than it is now.)

      Thank you for your good wishes, happy holidays,

      Wendy

  2. Nancy

    Wendy, I am a kindred spirit! I live on a small farm in southern Vermont and tend to a small flock of chickens who I love to pieces! Normally hale, hearty and strong, I have been chronically ill since spring, 2012, with many of the symptoms you’ve had (painful soles, tendonitis in the elbow, debilitating achilles tendonitis, constant muscle spasms/twitches…) plus LOTS more, and I am finally 3 months into aggressive treatment for advanced Lyme. I expect to be on a “cocktail” of meds for about a year. I’m going to go back and read all your previous Lyme posts, but for now, regarding this particular post, 1) are you aware of the relationship between Lyme and yeast? and 2) are you under the care of a Lyme specialist?
    I would love to compare notes with you!

  3. Hi Wendy. I came across your blog on a Lyme site. What caught me were the eggs in a picture. I just got a few chickens this past summer. Love my flock!
    But I wanted to pass on a website to you. http://Www.lyme411.com. A friend Nancy runs a Lyme group in the Laconia area. She is a wonderful woman and a wealth of information. My youngest daughter was diagnosed with Lyme in fall 2012. Fortunately a round of antibiotics seems to have done the trick. We do supplement with antioxidants as well.
    I have friends that can not eat gluten or they will also react with incredible inflammation as noted above. They do not have Lyme.
    Best of health to you and your family. Enjoy your chickens. I will be sure to check out your blog!

  4. Gretchen

    Hi Wendy,
    Definitely can relate to your blog on Lyme since both of my daughters struggle with the disease, but what complicates things is their co-infections: Babesia, Bartonella, Rocky Mountain Spotted Fever. These can come on the same tick as the Lyme and require different treatments. When you mentioned the bottoms of your feet being sore, that can be a sign of bartonella. My daughter used to jog, and that would cause the bottoms of her feet to actually feel like they were burning. Just curious if you have been checked for co-infections. The standard tests aren’t really reliable and give a lot of false negatives, but a good Lyme doc should be looking for co-infections and treating if appropriate. I would highly recommend a new book just out by Dr. Kathy Spreen called “Compendium of Tick-Borne Disease: a Thousand Pearls.” It was written for physicians but is very readable for lay persons as well, and goes into symptoms of all the tick-borne diseases, treatment options, etc. Good luck to you and hope you are able to enjoy the holidays before going back on treatment.

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