Hi, I have been sick with CFS for many years. My daughter started showing the same symptoms. I lived with her in Oklahoma until she was 6. Then we moved to Utah.
Before that,I had been bitten by many ticks. My guess would be at least 50 plus I pulled about a hundred ticks off a friend's dog who died the next day. Really sad.
But I got pregnant with her after I was sick battling severe CFS. Bed bound the entire pregnancy.
Her doctor recently did a western blot as she is getting weaker and weaker at age 15. Came back positive only on two antigens.
That doc sent her to an infectious disease doc who actually interrogated me for over five minutes asking why I thought she had Lyme, how long I had thought it, and was I going to be one of those crazy people who won't believe him that she does not have Lyme.
He kept repeating are you going to believe me? To me and my daughter. I was intimidated and of course said yes. I didn't come up with the idea, her primary care doc did.
So my question is, can a partially positive western blot mean she has Lyme? She only had two positive antigens. I could not really ask the doc after his attack, and he told me there is no Lyme in Oklahoma.
Is that true? He said it is only in Connecticut and around there. Should I pursue more testing or let it go as a negative? Thanks for any advice. Sorry this is so long.
[ 01-24-2016, 04:24 PM: Message edited by: Phoenixrising ]
Posted by t9im (Member # 25489) on :
You are running into the medical controversy of diagnosing and treating Tick borne diseases.
The positive antigens on a Western Blot show exposure to a spirochete bacteria. Whether borrelia burgdorferi or another borrelia infection really doesn't matter. You need to see a Lyme Literate Medical Doctor.
Seeing a LLMD will start you in the right direction.
Good luck and see if you can find a LLMD on the seeking a MD thread. The IDSA is a stone wall.
Posted by hopingandpraying (Member # 9256) on :
Welcome to Lymenet!
I would recommend you write a new post in "Seeking a Doctor" and title it, "Need LLMD in Utah". Also contact the UT Lyme Support Groups I have listed below.
Lyme Disease is growing exponentially and can be found throughout the United States as well as other countries.
You and your daughter both need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
Stay away from Infectious Disease doctors. They think one dose of antibiotics is enough to treat Lyme and that chronic Lyme doesn't exist.
Read about the controversy regarding Lyme Disease and its treatment:
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Unfortunately, LLMDs are far and few between. You both need to go where they are. I don't know of any in Utah.
Most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
Btw - please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.
To do this, click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Posted by Catgirl (Member # 31149) on :
Stay away from infectious disease docs (idiots). They are totally clueless, closed minded and know zero about lyme even though they think they do. They're following old guidelines from the idsa which are flat out wrong as well. They are why lyme gets missed.
Go to Seeking to find a lyme literate doc (LLMD, or LLNP, LLDO). You can also try www.lymediseaseassociation.org (will email you names).
Also get the book: Cure Unknown (Weintraub).
Posted by Lymetoo (Member # 743) on :
That's crazy. Yes, you can have Lyme disease from any tick bite anywhere. (not all ticks carry the disease, but your chances of having it are high)
Yes, it's in Oklahoma.
Find out which bands showed positive. That is important!
Lyme is everywhere! Ticks don't look at state lines and say, "Gosh, I better stay here because it doesn't exist in Oklahoma."
It's definitely worth pursuing Lyme. Saying 2 lines mean nothing is like saying someone is just a little pregnant. Obviously she was exposed at some time.
Lyme ruins the immune system. If you're body can't fight it, you won't make enough antibodies to combat it (thus the mess of testing).
It took a friend 5 Lyme tests to get a positive. The sicker you are, the harder it is to get a positive test because your immune system craps out.
Good luck. CFS is caused by infection a lot of the time.
Agree .. CFS is USUALLY from an infection.. a stealth infection like Lyme disease.
Posted by Phoenixrising (Member # 47382) on :
Thank you!!! I will check out the links you guys gave me and see what to do next. Her bands that were positive were P66 Ab and P41 Ab
then below that it says P23 Ab-163638 present but that may be a description of which antibody counts as a positive. It's hard to read.
Anyway, I'll check out those links. Thankyou! Thankyou! for your help.
Posted by Robin123 (Member # 9197) on :
66 is a definite Lyme band. Many doctors, and us, think that even one positive Lyme band is enough. 41 can be triggered by any spirochetal illness, which includes Lyme. If 23 is there, that's another.
I think it would be a good idea to print out the article Judie's mentioning and go back and give it to the ID doc's office!
Posted by Jordana (Member # 45305) on :
I don't know why sick people even go to ID docs anymore. They're really complacent, because what they've learned -- this from experience since I went to see this "very learned and experienced" ID doc twice -- is that their diagnoses are based on "likelihood."
When I showed him my positive ACTIVE infection tests for CMV AND EBV what he said to me was -- " What are the chances anyone would have both of these at the same time?"
In other words they're not going on their own observations or patient symptoms, they're going by epidemiology.
I think this is because they're trained to contain panic instead of diagnose or treat disease.
I had 41 and 66 IgG at my first Western Blot. I don't think given current studies that 66 is specific, but I do have Lyme.
Posted by Lymetoo (Member # 743) on :
Band 23 is even more important than band 66.
Posted by Phoenixrising (Member # 47382) on :
Thank you again. This is all very overwhelming especially because I am sick and working and there's just no energy left to figure all this out.
I'm sitting here at work right now with an all over tremor. I've been sick many years and have learned to live this way just feeling awful all the time.
But my only positive test was Epstein bar. And way yyy back then, I got yelled at by an internist who told me the same story my daughter is getting now.
I wouldn't believe it could happen again but it is. I got told my primary care doc was stupid and there was no such thing as reactivated Epstein Bar.
So I just went home sick and couldn't walk for two years. But that's a whole other story.
Now it's my daughter and its hard to watch. Thanks again for your kind replies. I need to figure this out for her.
Posted by DanP (Member # 7501) on :
an infectious disease MD once said to me "you can't have Lyme disease, you live in Manhattan" I walked out saying I couldn't believe someone as stupid could pass the medical boards....
Posted by me (Member # 45475) on :
Infectious disease doctors told me Lyme doesn't exist where I live. Kept getting sicker. New study shows Lyme is endemic to the state I live in where "Lyme doesn't exist."
Turns out I have Lyme and Babesiois. Multiple labs and my progress on antibiotics tell me so. I have made progress since starting treatment, but I have a long way to go. The proof is in the pudding.
If Lyme is a suspicion, it is imperative to see a highly LLMD as soon as possible in my opinion.
Posted by Phoenixrising (Member # 47382) on :
Thanks for your responses. I'll spend my weekend doing some research, and maybe send my daughter's blood to Igenex. They sent me a kit last week. Any thoughts on that? Is that worth my money?
It really is hard to believe some of these MD's can be considered educated. Not to bash all of them, but I seem to have run into enough of them with my CFS that have no common sense at all!
And they can be so mean! There seem to be two kinds of doctors, in my experience, mean, condescending ones who almost laugh at you when you tell them how sick you are and they refuse to help you based upon some book learning they got 25 years ago.
Because who can study new information when you work all day raking in $$$ every 15 minutes as you shuffle patients through your office? The other type, are kind enough to say they don't know what to do and are willing to try things that you ask them to try. Some of them actually read new information. I think. Or was that a dream?
Posted by me (Member # 45475) on :
Igenex is a good lab. Keep in mind that Lyme is a clinical diagnosis. Also keep in mind that what the CDC considers as a negative response to Lyme disease is very different from what LLMDs and ILADS consider positive.
The diseases itself and the controversy that clouds the disease are very complicated. One of my best "weapons" against Lyme and coinfections has been trying to educate myself along the way. A good source to start off with is Dr. H.'s book, "Why Can't I Get Better?"
All the best
Posted by Phoenixrising (Member # 47382) on :