This is close to the end of my taking antibiotic medication for one month for Chronic Lyme disease.
This is the point where Doctors who are not familiar with or who are not versed in Lyme treatment would say “that’s it, you’re done.” There is a lot of debate in the medical community about whether after one month of treatment; the lingering complaints are due to damage from the disease (coined Post Lyme Syndrome) or whether it is still the Lyme bacteria in your body doing its thing.
And while there is no doubt that if you have Lyme long enough, you have permanent damage to your system, on the other hand, if you keep showing improvement – that speaks volumes to the theory that the Lyme is still in your body and still needs to be attacked.
I’ve had an interesting week. The cold weather has settled in and for the first time in ages (and I mean at least 10 years) my hands and feet are not turning ICE cold in response to the outside temperature (and resultant chilly house.)
I don’t have Reynaud’s syndrome (been worked up for that) but there were times my hands and feet felt like death, far too cold to support life (and if you think I’m kidding try being my husband whose warm neck would have to heat up my fingers in the morning.) It’s a weird thing and although odd, never caused any pain so I just let it go and racked it up to getting older. I would just wear fingerless gloves around the house and make sure that my feet were covered by an electric blanket when I was watching TV.
Since I’ve started the antibiotics, I have not had cold fingers and feet. Even when sleeping outdoors in a car (camping) for the night. For the first time, one can actually detect heat in my fingertips (and trust me, unless you’ve felt this condition, you just won’t understand that when I say cold, I really do mean ice cold.)
A co-incidence? Perhaps, but very suspect. One theory I’ve come across is that the Lyme spirochete (which is a relatively large bacteria) blocks blood supply in the tiniest of capillaries with the poorest of blood supply (the outermost extremities which is the same circulatory reason why diabetics have problems with fingers and toes.) Perhaps (and remember this is only conjecture) the Lyme load is being reduced in my body and I have better extremity circulation. And with better circulation comes heat.
With regard to my body, I’m not pain free – not sure that I ever will be (had plenty of orthopedic surgery to ensure that that is probably not going to happen) but that extra layer of constant, thought intrusive pain is diminished.
The biggest positive change I’ve noticed is that I don’t think twice about getting up and walking. Before it hurt so much to be on my feet that I was stingily doling out my walking energy for the day – I’ll go out to the kitchen only when I need to, I’d put off a walk outside knowing how much pain it would bring. Now, I just get up and walk.
I’m starting to have full feeling in that little toe which means that my right foot is now un-numb. And the bottoms of my feet, though remarkably better, can still be quite sore if I overdo things.
I’ve noticed that I’m getting more muscle twitches in my legs and some in my arm (the one with the tendonitis.) They seem to come in waves and I tend to notice them more at night.
Some of my symptoms return on some days and not on others, which strengthen the case that this is “all in my head” I mean, come on, medicine doesn’t really work that way does it?
Oh, and speaking about my head, whenever I walked, I used to hear a squeaking little sound coming from my neck. Not painful, just a sound I noticed, as if two things were rubbing against each other. That noise is now gone.
I know weird, right? With a vague symptom like that in some ways I don’t blame Doctors for not being able to recognize Lyme.
“You say that your neck makes noise? Your fingers are cold? Muscle twitches and your right foot is numb? – um, sure, how are things at home?”
Also, take a closer look at those symptoms; is it also any surprise that many chronic Lyme cases are being diagnosed as MS? The symptoms all sleep in the same bed.
I see Doc Holiday tomorrow and will listen to what he has to say about future treatment. In any event, I know I’ll be continuing my gluten, dairy, sugar, and alcohol free diet for much longer. I feel too good not to.
As an aside, I took one of my daughters in to the doctors have a sprained wrist looked at. While we were waiting, she looked at a Lyme information sheet dated 2008.
“That’s wrong,” she said after reading about “the rash” being needed for treatment. “
“And that’s wrong,” she said as she pointed to a picture of a tick being removed with tweezers. She knew that with tweezers, you run the risk of pushing all the stomach contents (including any Lyme spirochetes) into the wound. Ideally, you should be using a tick spoon, or a tick key where you “scoop” under the tick and use an upward motion to remove the disgusting critters.
Yup, that’s my daughter, the little Lyme Literate Kid.
Lastly, thank you all for your comments and discussion. I read every single comment 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 [email protected]
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