Wednesday, July 21, 2010

Lyme Disease and Co-Infections

So, today is Day 4 of my trial of going off doxycycline to see whether my Lyme is gone yet.  I have to admit I'm not all that optimistic because I've tried this twice before and my symptoms came back...although I would love to be back to dealing with just one illness instead of two!!  (If you're new to my blog, I've had CFS for 8 years and just got Lyme two summers ago.  Check out this earlier post on CFS and Lyme for the background.)

I felt good the first few days without doxycycline.  I'm starting to get achy legs, a bit of a sore throat, and feeling a bit run-down, so now comes the guessing game - is it "just" CFS or is the Lyme still there?  We've had a busy week, with houseguests and a broken air conditioner (it's being fixed right now), so it could be a CFS crash.  With the aches, though, I suspect it's still Lyme.  I'll give it another day or two.

Meanwhile, I promised (weeks ago!!) to give you more details about the symptoms of Lyme and its co-infections (other common infections carried by ticks) because these infections are so often misdiagnosed as CFS.  I believe that anyone with CFS and/or fibromyalgia should look into Lyme because they share so many symptoms, particularly if you are getting worse over time and/or have increasing neurological symptoms.  More than 50% of those with Lyme were not aware of a tick bite because the ticks that transmit it are the size of a poppy seed.

Here is a brief overview of some of the characteristic symptoms of tick-borne illnesses (though, like CFS, there are a wide variety of symptoms).  If your symptoms match any of these, then you should definitely get tested for all of them (though the tests are prone to false negatives):

Lyme Disease
  • Gradual onset, often monthly flares (the Lyme spirochetes have a 28-day reproduction cycle)
  • Chronic pain, especially in joints; joint swelling; arthritis-type symptoms
  • Flu-like symptoms - fatigue, achiness
  • Brain fog that gets progressively worse
  • GI problems
  • Heart racing
  • Lower than normal body temperature
  • Increasing neurological symptoms over time
Bartonella (also known as Cat Scratch Fever - can be transmitted by ticks or cat scratches)
  • Central Nervous System symptoms, including irritability/anxiety, GI upset, muscle twitches, overstimulation, light sensitivity
  • Pain in soles of feet
  • Occasional night sweats
  • Rash that looks like strange lines, either horizontal or vertical (can look like stretch marks or like long scratch marks)
  • Headaches
Babesia (causes Babesiosis)
  • Abrupt onset with fever
  • Night sweats
  • Fatigue
  • Headaches
  • Severe Lyme symptoms
  • Symptoms worsen after exercise
Ehrlichia (causes erhlichiosis)
  • Rapid onset with fever
  • Severe knife-like headaches
  • Sore muscles
  • Sometimes a spotted rash
  • Low white blood cell count
I pulled these lists together from several sources.  This past blog post includes several links to excellent resources on Lyme and its co-infections.

Lyme and other tick-borne infections have been diagnosed in every one of the 50 states and in almost every country around the world now, thought they are more prevalent in certain regions.  Although they are hard to get rid of when they've been undiagnosed and untreated for a long time, these infections ARE treatable. 


Renee said...

Just want you to know I am thinking of you with going off doxy. Is this the only antibiotic you have taken? Joel is on it now with herbs...I was on it 2 yrs and went off....symptoms came back without me realizing it until all of a sudden....Lyme is tricky, clever, and loves to hide from treatement...I don't remember, do you see a Lyme Literate doctor?
Ya know, I think it is Pam Weibtraub's husband who takes doxy and never plans to not take it as he can function on it and can't when he is off. She wrote Cure Unknown. Great book!!
Wishing you well, Sue....

Toni said...

Hi Sue. It must be so hard to be experiencing these symptoms and not know if it's CFS or the Lyme coming back. I'm so sorry. Hopefully, you'll know better in a day or two.

It's interesting that now that I'm more "public" about the illness (meaning I have a big Facebook presence), I have a lot of people writing me privately insisting that I have Lyme Disease. When I tell them that I don't suffer from joint pain -- really from no major pain at all -- they are undeterred and say that one can have Lyme without any pain.

To be sure, I'm going to get the Western Blot again but it feels like a bit of a Catch 22 because they tell me they don't accept the results of those tests, that I have to go to a LLMD. But I don't know a single LLMD in my area who has ever told anyone they don't have Lyme, so I feel in a bit of a dilemma.

Well, thanks for letting me vent. And thanks for the very informative post.

Pamela said...

Hope you continue to feel well and that your 'symptoms' don't get worse! Would be great if you just have CFS (ha! sounds funny saying that, but you know what I mean). Your doctor most certainly knows what he/she is doing but I'll throw this out there; I was fine off doxy it's when I went back on it (or another antbx b/c Lyme gets used to them) that I'd know I still have it b/c I'd herx. So, it you want to test it without waiting a long time, you can see about going back on something and if you get a reaction. Whatever you do, good luck and wishing you well. Hope it's gone for good.

Unknown said...

For daily up-to-date information of Lyme Disease research, check out this Twitter List:

Anonymous said...

(I deleted this comment by mistake, so I'm copying it back into the comments - it was left anonymously - Sue):

Hi there Sue.

I have had lyme for eight years. And when I got the "CDC cure" I didn't do much.

The standard treatment (2-4 weeks of either doxycycline or ceftriaxone) is effective for those who have been just recently infected. But if you have been sick for more than 6 months. Then it's a totally different story.

There is no way of knowing for sure whether or not you've got rid of the lyme, just like there is no way of knowing for sure if you have lyme... (it's because all the testing is indirect, based on your immune system, and not direct, as in looking for the bacteria via PCR).

I hope you get the help you need.

I recommend taking a look at these sites:
LymeNet forum

Under Our Skin - trailer for a movie

I wish you the best of luck with your situation. And I hope you find out something which works for you.