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Posted 6/16/2013 11:39 PM (GMT 0)
I'm new to the site and about 15 months into the Lyme world.

Last February, I was bitten by a deer tick.  I'm on a four acre lot and so am surrounded by trees and shrubs at the height the ticks like to hang onto.  After about 8 weeks of watching the symptoms develop, I was sure I had Lyme. My GP agreed. We started on Ceftin (May) and I was on this for four months even though the W Bloc never showed positive. 

Being sure I was okay now (Sept), I went off the antibiotic, symptoms returned immediately along with a few others: arthritic pain, swelling of joints, and extreme fatigue. By early January, I could hardly climb the stairs to the bedroom.  Whereas I'd been running 20-25 miles a week, I could barely run two or three. 

I convinced my GP's partner to give me another round of Ceftin and in the meantime, I'd seek out a Lyme Aware Physician. She did and within two weeks I was back to running my usual 13-15 miles on Saturdays.

My Lyme Aware physician has done every test imaginable and agrees that I have Lyme. I'm on Omnifef, Azithromycin, and a host of supplements.  For four weeks, I was also on Rifampin for the Bartonella co-infection. 

This past week, I went down for the count.  I was in bed for four days, and for two, was unable to do much beyond the necessary to care for myself.  I'm feeling better now as far as the fatigue does, went off the Rifampin, but my legs and feet are a mess. The only way I can get to sleep or find comfort is to soak them in ice water for 10-15 minutes.  I normally have to get up at least once during the night to do it again, then I can go back to sleep. Sometimes, I have to get up twice. 

For the past two-three weeks, I've noticed a change in my legs and feet: the stabbing pain, hurts to stand on them, and the almost constant burning.  I'm afraid that I'm developing neuropathy. 

Would someone weigh in on this and share your experience? As much as I love to run, I can't imagine being unable to run or walk.  I have a brother-in-law who has been unable to walk for many years because of n.

Would you also weigh in on the use of antibiotics for extended lengths of time?  If you've gone a natural treatment, what did you use? 

If anyone knows a Lyme Aware physician at Hopkins, please share the name. 

Help!!!

Thank you.

P

 

Posted 6/17/2013 1:07 AM (GMT 0)
Hi there, Hockey!

Welcome to the forum! I am sorry to hear you have Lyme and are feeling poorly. Have you checked out the thread at the top of the forum page that says "New to Lyme? Start here!" ?

The symptoms you are describing are typical of Lyme, unfortunately :( It's great that your PCP is Lyme aware. You definitely need to see a Lyme literate doctor or naturopath in order to kick this disease! We can help you find one in your area.

I was sick for three, maybe four years before I found out it was Lyme. I was on Biaxin and Plaquenil for three years and became well. I relapsed last year after a series of stressful events and am back on Biaxin and Plaquenil. I'm on a waiting list for a new LLMD and would like to try an herbal protocol.

Again, welcome! Please keep posting!
Posted 6/17/2013 1:29 AM (GMT 0)
Hello....
Not alot of time right now to give details...but have been clinically diagnosed by GP with Lyme ... Hoping to get named of LLMD in or around Boston MA or Southern NH. Thanks in advance!

Pdbjsaint
Posted 6/17/2013 2:29 AM (GMT 0)
Am soaking my feet in ice water as I write this, 2nd time in two hrs.

My Lyme Awere doc took me off Rifampin last week and prescribed Plaqunil (sp?). I haven't taken it yet; fearful it will make the neuropathy-like symptoms worse.

Did you have any side-effects from it? I've also had my second mysterious bruise in the last week appear on my left leg.

What to do next???
Posted 6/17/2013 3:09 AM (GMT 0)
drbp,

Have you been tested for any co-infections? I've been dealing with the easy bruising, too, and my doc says it's from babesiosis.
Posted 6/17/2013 3:19 AM (GMT 0)
The easy bruising could also be from blood-thinning supplements. Most herbs like Cat's Claw for example thin the blood.

Why did your doc take you off Rifampin after only a month? Seems like you undertreated for Bart. Are you taking Biaxin with the Plaquenil? Biaxin is a better Lyme drug than Azithro so you may want to talk to your doc about switching.

I have the tingling and burning in my legs and feet too. Do your legs feel like lead weights?
Posted 6/17/2013 10:41 AM (GMT 0)
My Dr took me off R because I had four days of to-bed fatigue. He thought maybe we had increased the dowager too soon. He wanted me to start the P, but with the neuropathy-like symptoms, and with the chemical base of P being one that will cause N, I am fearful of taking it.

He and I are to talk today or tomorrow, so stay tuned.

I am 65 years old, never have had a major illness or surgery, and have always been able to avoid the onset of age-related diseases with diet and exercise. So you can see my frustration in having to take all this prescription med. And, my small frame, low weight, and low body fat % do not tolerate all of these chemicals well. P
Posted 6/17/2013 10:43 AM (GMT 0)
I do have Bartonella, symptoms of babesia but tested negative for it.

P
Posted 6/17/2013 10:46 AM (GMT 0)
Not on blood thinner or cats claw. Has anyone tried teasel? This is recommended in "Healing Lyme Naturally."
Posted 6/17/2013 12:31 PM (GMT 0)
The fatigue from Rifampin is a herx as I'm sure you know so you were hitting it hard. Taking you off it does you no good. Treating this disease for some is kind of like hazing for a fraternity where you have to suffer first to get to where you want to be. There's no other way.

If you have Babesia symptoms then you most likely have it despite the negative test as testing is very inaccurate especially for coinfections.
Posted 6/17/2013 5:00 PM (GMT 0)
I think the P is a substitute for the Rifampin. I hope to talk to my Dr. later today. I wonder why I'm on two drugs for Bart since azithromycin is also used for Bart.

Thank you for the input.

P
Posted 6/17/2013 5:59 PM (GMT 0)
The plaquenil is not for Bart. It's used to make the Zithro more effective though it's usually combined with Biaxin. There is evidence it promotes Lyme cyst formation instead of busting them and also can affect the eyes taken long-term. Rifampin, Bactrim and Levaquin or Cipro are the drugs of choice for Bart though more the first two because of its safety.
Posted 6/17/2013 8:31 PM (GMT 0)
Dr. N reduced the dosage of Azithromycin because my EKG he did showed some change since my last one several years ago.  At the time he did this, he prescribed the Rifampin.

P

Posted 6/19/2013 4:16 AM (GMT 0)
I second that the rifampin was likely a herx. It has done wonders but can knock you down in the beginning. Maybe consider it again in the future ;)
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