My doc told me he'd like me to retake my WB in 4-6 weeks (it came back Igenex/CDC Neg) but that he would treat me regardless if I do or don't retake based upon all of my test results combined w/ my history and symptoms. When I took my first WB, I was one week into antibiotic therapy to "jump start" my immune system. Since the test, I've read that if you do take antibiotics to help your WB improve that you should stop them for 10-14 days before taking the test or they could interfere w/ results. Does anyone have any advice regarding prepping for my second WB?
Tests/results I have so far:
Here's the breakdown:
WB
IGM **31 IND **41 IND IGG **31 IND **41 POSITIVE **83-93 IND
Other test results:
CD57: 44 HHV6: POSITIVE 1:640 EBV: POSITIVE 7:11
I am a 43 yr old female and was diagnosed with CFS in my early 20's...SPECT scan positive for lesions but no EBV present at the time...diagnosed with fibromyalgia @ 42, now doc believes it's Lyme.
Symptoms: Started w/ head-crushing headaches nightly which have now subsided, extreme fatigue, insomnia, brain fog, inability to focus and concentrate, memory problems, searching for correct words to use or people's names which has worsened last few years, joint aches, especially in hands, wrists, forearms, feet and calves, muscle aches all over, irritable bowel syndrome.
Had rash at age 21 on upper arm that started small and grew outward in a circular pattern until it reached the size of a silver dollar but never knew what caused it.
Any help/advice you can offer would be greatly appreciated...thank you in advance for your time Posts: 9 | From SoCal & AZ | Registered: Jul 2010
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Do you have a picture of that rash? Did you tell your doctor about it? A bullseye rash is diagnostic of lyme disease, so you wouldn't need further testing.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Unfortunately I don't a picture of it (I was 21 and naive) but I did tell my current doc about it during my last visit. I can't remember if it looked like a bullseye, all I can remember is it grew from a small circle outward into a larger circle and looked a bit raw. I had never had anything like it and went to my derm...he cultured it and said it was a staph infection and gave me cream to put on it. Soon after I got a few circular rashes on my behind, circular rings which I assumed @ the time were probably ringworm as I had never had them before have either. All this happened while I was dating a guy who lived in a semi-rural area. He owned two very cute ferrets that would run loose in his house and also outside in the yard. I always figured I caught some funky things from the ferrets! Now I wonder, tick bite? Anyhow, this doc did and still does think I have Lyme, even though my WB was negative. Even though he told me it was my choice to retake, he seemed to be encouraging me in that direction.
Posts: 9 | From SoCal & AZ | Registered: Jul 2010
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posted
You don't need to test for or even ferret out if you have Lyme disease if you had bull's eye rashes. That means Lyme disease. You need to see an LLMD. I pm'ed you.
Posts: 13171 | From San Francisco | Registered: May 2006
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
From the headache description it sounds like a co infection is present (either Bart or Babs).
I recommend Dr. B's advanced topics in lyme disease, good reading.
Until the co infections are erridacated, especially Babs, your WB results may not show CDC positive (which will help with medical insurance).
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You said: " . . . small and grew outward in a circular pattern until it reached the size of a silver dollar but never knew what caused it. . . ."
I'd save money from testing and put it toward treatment. Lyme is a clinical diagnosis. Your past rash is highly suspect, and your symptoms are pretty much waving you in.
Testing is by no means where it should be. A good LLMD is scientist, detective and artist. I would put my money on diagnostic procedures from a seasoned and well educated LLMD long before any lab testing as spirochetes are just so very hard to pin down in the lab. That's why lyme is called a "stealth" infection. Sneaky, uncanny in its ability to evade detection.
Although HHV-6 and EBV are in the picture, lyme could make those worse. But, I hope your LLMD would address anti-virals as well. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Appreciate the responses and great info, Members! I'm now starting the hunt for the right LLMD.
Posts: 9 | From SoCal & AZ | Registered: Jul 2010
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posted
get a full body massage a few days before you retest my llmd says he has seen a marginal test turn into a more positive test this way.
he says massage moves the bugs out of their favorite hiding places ie cartelidge and muscles and into the blood stream where they are more readily able to be picked up by a blood draw !
Posts: 294 | From sw chicago suburbs | Registered: Apr 2007
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Remember to Smile
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posted
pj1954, Great suggestion! I suppose herbalist Stephen H. Buhrner suggests Swedish Massage for similar reasons.
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Dear copswifey, I'm sorry you've got Lyme disease (and it sounds like co-infections, too).
But welcome to the supportive LymeNet community!
I'm with the posters above urging you to skip another WB now and just focus on getting yourself a LLMD asap.
According to the illustrious Dr. S. of Va, fibromyalgia is caused by the sleep deficit brought on by Lyme Borrelia spirochete infection. Since you've long had diagnoses of both fibromyalgia and CFS, and now have numerous neuro issues, any LLMD will recognize your Lyme neuroborreliosis.
Between phone calls to LLMDs, reading in ILADS' 37-pg Treatment Guidelines by Dr. B (16th Ed, Oct 2008) as you are able, and taking naps, here are two other things you may wish to focus on:
1. Start journaling your symptoms. Mark particularly horrible days and "not bad" days on a calendar. Your symptoms and their cycles will assist your new LLMD in creating appropriate treatment for you & your co-infections.
2. Begin writing up a brief history of your symptoms in columns or just bullets with the date (or approx date), symptom or diagnosis, physician (if applicable), where (which state or country). Again, this is to help your LLMD understand your personal case history.
Know that your new LLMD will order blood work as needed. If you were to spend extra money on lab tests, you may wish to consider testing for Bartonella at Galaxy in NC. But that would be after conferring with your new LLMD.
janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
Your Western Blot is positive, IMO.
IND means indeterminate-not negative.
Bands 31 & 83-93 are specific for Lyme.
As the others have said, use your money for treatment not unnecessary testing.
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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