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Unless otherwise noted, all recipes on this blog are free of gluten, peanuts, soy, corn, tomatoes, potatoes, shellfish, cane sugar, oranges, and yeast. Most recipes are also free of egg, dairy, and tree nuts (if used, reliable substitutions will be provided for these when possible). Check out my recipe index for a full list of recipes by category. 

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Monday
Jan252010

By CDC and NIH standards, I'm cured.

According to the CDC and NIH, most cases of chronic Lyme Disease can be cleared up using a 3 to 4 week course of antibiotics.  Having just completed my third week of antibiotics, I can tell you with assurance that I am not "cured".  

Okay, so let's break it down. I started antibiotics on January 2 (Happy New Year!).  If I had been prescribed a standard 21-day course of antibiotic, like the CDC and NIH recommends, I would have swallowed my last dose on January 22, three days ago.  Maybe my doctor would have gone for 28 days instead, and I'd still have a few more days left. Either way, any residual joint pain, brain fog, fatigue, muscle weakness, light sensitivity, digestive complaints, metabolic issues, hormone imbalances, emotional symptoms, or anything else would be attributed to other things.   Even worse, I'd probably be told they were mostly psychosomatic.  I'd be prescribed an anti-depressant and anti-anxiety medication.  To deal with the joint pain, I'd probably be prescribed a painkiller.  To deal with the digestive issues, I'd be told not to eat foods that irritate me, and take a probiotic or eat some yogurt to keep things regulated. I'd be told to get enough exercise and sleep and eat well and eventually, I'd feel better.

Bullshit.

If my antibiotics stopped now, and left me feeling like how I feel today, I can say with assurance that it would be awfully challenging to resist the urge to self-medicate.  I feel like I am just starting the Herxing process; stopping antibiotic or all other forms of treatment now would be the worst thing I could do, only allowing the bacteria to grow stronger.  I have a searing headache, feel like I am walking around with a weight on my shoulders, keep losing my balance, and just want to lie down somewhere.  You'd never guess it by looking at me, so I'm sure all my coworkers think I'm just a little sleepy or little crabby or something.  

Cured?  Talk to me about cured, CDC and NIH.  Explain to me why nothing has vastly improved in three weeks if three week is all we need to cure Lyme Disease.  Offer me an answer that isn't blaming me for my own "psychosomatic" symptoms.  Tell me why people really do get better on long-term antibiotic therapy, unlike your "controlled trials" showed.  Please, I implore you.

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Reader Comments (2)

So I'm getting around to commenting a little late, but just wanted to say AGREED! I just finished 2+ years of antibiotic treatment, and I'm certain that I needed aggressive abx therapy like that to kill off the infection I'd been living with since childhood. Late stage Lyme is not an easy infection to treat!

Hang in there. In my case, the first year was full of ups and downs but ultimately I think they were all ups - even if the herxes felt differently. My second year was full of big leaps forward, some short term leaps backward, and big leaps forward again. As patients, I really feel like we know our bodies better than anyone else - when it's back to "normal" or when it's crying out for help. My body told me when it was time for me to let go of the abx and work towards undoing some of the damage Lyme had wreaked while it was still active. But first thing's first, and getting rid of the infection was absolutely essential if I wanted to bring all of the other areas it affected into balance.

It's unfortunate that organizations that are supposed to promote health would find it so hard to believe that the body needs time to heal. It's really frustrating, and I just try to remind myself that we're on the verge of a tipping point with Lyme Disease and things like Under Our Skin, Cure Unknown, and the IDSA hearings are doing a lot to increase public awareness.

I hope you feel better soon! Three weeks in is three weeks closer to the goal!

February 1, 2010 | Unregistered CommenterKim

Hey Kim,
Just found your journal today, a friend forwarded me your link. I've been struggling with Lyme for almost 6 years now as far as I know (as they still have not come up with a proper diagnosis and I've had more than a few ticks in my life and did have the bulls eye rash which the family doc I saw at the time said was "fine" and prescribed NOTHING for)...
It started with numbness, crawling skin, loss of feeling, then moved into the fevers, joint pain, etc etc. I have every symptom under the sun. Too many to list... I have been treated by over 16 different doctors and specialists including but not limited to neurologists and rheumatologists, as they think I have RA. I've been through EKG's EMG's Cat scans, MRI's - and tons of blood tests about once a month or so for at least 4-5 years. Been on so many varieties of antibiotics, and cancer meds and immune suppressants (not fun) and although I totally agree with the pills thing, the side-effects really were worse than the schedule for me. Puking, shitting and a constant fever were only a few side effects I got to deal with every day... (I can't imagine people who live through kimo - god!) In any case, been off meds for a year now and am feeling just as good / bad as I was on the meds - and the only thing they can measure is my RA factor, which seems stable - whether I'm on or off drugs - but I do feel it getting worse from time to time.

I think I have given up on the medical system now and just want to live the rest of my painful life out of a doctor's office. I'm giving one last shot to a Naturopath, as I think they may have more insight than any of the doctors I've seen that push me a pill and tell me to schedule a follow-up...

Just wanted to let you know I really enjoy your blog as I feel the same way you do on almost all these points and although it's a terrible thing to go through or wish for anyone, it's nice to know that we are not alone... I feel your pain.

Ilse

May 21, 2010 | Unregistered CommenterIlse Dyck
Sorry, no comments/questions allowed right now.
Hi reader! My schedule as full-time grad student with two part-time jobs doesn't allow me the time to manage comments. I hope you enjoy what you find and can figure out answers to any questions you may have. xo