I finally got a cnm to do a lyme test for me today in the cleveland ohio area. she was the one who originally suggested it back in october. i thought she was crazy.i've been told by every dr. there is no lyme in ohio. She says nonsense. she is the one who got me thinking lyme thats how I found lymenet. I am terrified. The what ifs are scary. I got bit by a tick in first grade over thirty years ago. I have seven children who all have various symptoms as I do. I have been searching and searching the info on this site has put many puzzle pieces together. This is the sickest i've ever been. I fear if i don't get an answer soon, i'll end up in a wheelchair. : ( It is all overwhelming. Part of me wants the test to come back screaming positive.
Posted by Lymetoo (Member # 743) on :
Hang in there! Do you know where the test is being sent? Which lab?? Very important!
I have to leave the house for awhile but stopped by to leave you this link for more information:
- Today (Thursday)? Usually these are done earlier in the week. Was your blood drawn today? If so, do you know what lab it was sent to and what test they are going to do?
ELISA? If so, you will likely need other tests beyond that. Western Blots are best as this stage but not all labs test all the bands or even do the test correctly. If done on blood that is not fresh, it also might not be accurate.
Igenex would not take blood drawn so late in the week (or that sits around over a week-end) so I hope, somehow, this will go to a good lab.
Did you have a LLMD order the tests and specify the exact lab and the techniques to draw, prepare and ship?
IGENEX -
Posted by stickymommy (Member # 24233) on :
it was sent to igenex. their lyme panel. the midwife who drew it said it would go out monday. she is not super knowlegable. the test is expensive. should i ask her to draw it early next week?
Posted by stickymommy (Member # 24233) on :
really worried now. i wish i knew more.
Posted by Geneal (Member # 10375) on :
I would send it on Mon, Tue, or Wed at the latest.
That way your blood won't sit over the weekend.
Hang in there.
Hugs,
Geneal
Posted by Keebler (Member # 12673) on :
- The blood should not be sitting around until Monday. I would get it redrawn. You should not be charged for the re-draw because they should know better.
Be sure the preparation work for the blood - from the instant it leaves your body to the time it is picked up by Fed Ex is exactly according to the Igenex directions.
You may need another test kit - or exact tubes as the ones sent in your kit that has already be used. Does the person you are working with have another kit on hand? If not, call tomorrow and ask Igenex what tubes you can use, then. They will help you.
Good to see it is Igenex and a lyme panel.
-------
Hey, about the worried part - while I have extreme empathy my energy level just doesn't allow me to go into all that but just remember that knowledge is power and, whatever you find out, if you have a good LLMD, you will get to the bottom of this.
Take care and feel nurtured. Hugs to you. -
Posted by stickymommy (Member # 24233) on :
ok i will call tomorow and ask to get it drawn monday.
Posted by sutherngrl (Member # 16270) on :
I totally get your statement, you hope it comes back screaming positive. Don't we all??? I have been where you are, waiting on that darn lyme test.
The one thing to remember is that lyme disease is a "clinical" diagnosis, so even if the test comes back negative, that does not rule out lyme disease.
My first test was totally negative. Didn't get a positive until one year after treatment.
Posted by lymie_in_md (Member # 14197) on :
just because you have symptoms doesn't mean any of your blood will show the disease. Try visiting the following link, maybe some of your questions will be answered there.
Glad you're having it drawn on Monday. Could make a big difference!
Also glad it's going to Igenex!!
Posted by Carol in PA (Member # 5338) on :
The lab tests aren't very good, many false negatives.
Because of this, Lyme Disease should be diagnosed based on the patient's symptoms and his history.
This is known as a clinical diagnosis.
Most doctors will not make the clinical diagnosis. They look at the test results and tell the patient that he doesn't have Lyme.
Carol
Posted by Keebler (Member # 12673) on :
- stickymommy,
Exactly as Carol says. So, if you do not yet have a LLMD working with you, I'd put the money on an appointment with a good LLMD rather than a test if you are trying to convince a non-LL doctor to help you.
Did you EVER have a bulls eye rash after a tick bite? Not everyone has a rash (and some appear differently) and not everyone remembers a bite, either, but the bulls eye is a hallmark feature if it appears.
I hope you can find a LLMD to assess you in person, consider your history and symptoms and go from there. If you can afford the Igenex lyme panel AND a LLMD appointment, the test can be helpful. But if money is limited, I'd see what the LLMD has to say first as no test is likely to be the crowning touch.
The CDC has set ridiculous criteria for what they consider a positive test. But most regular doctors blindly follow that so most who are very ill with lyme are denied treatment.
That is why it's best to see a LLMD who is an ILADS-member (or ILADS-educated - as in having read all the research of ILADS member, gone to seminars, etc.) Not all LLMDs follow the ILADS treatment guidelines - and each patient's care is not exactly the same as all other patients, depending upon coinfections, etc. but if a doctor is ILADS "educated" as least they know all the things to consider.
This is a quote from Dr. C's Western Blot Explanation (at top of Medical section). It explains why the blood must be drawn on Monday, Tuesday, or Wednesday only:
"The right way to process the Western blot specimen means for the blood to be drawn and express mailed early in the week.
Research shows the borrelia antibodies have the potential to clump together, resulting in false negative test results. So far, unclumping has not been practical for laboratories to do.
The fresher the specimen, the more accurate the test results. Patients at our office are scheduled Monday, Tuesday, or Wednesday if testing is to be done.
This way, express shipping will assure that the specimen does not spend the weekend sitting at the post office. This is the right way to test and ship borreliosis specimens. "
Maybe if you give them this quote, they will adopt the practice of only doing this test early in the week. That will benefit others in the future.
You definitely want your blood re-drawn on Monday. Otherwise, clumping could cause you to get a negative test, and all that money wasted.
Posted by LightAtTheEnd (Member # 24065) on :
I am so sorry you and your kids are going through all that.
You said, "Part of me wants the test to come back screaming positive."
Apparently that is a common wish for most of us.
At my first visit to my LLMD in December, after considering all my symptoms and asking me many questions, he said, "Well, you have classic Lyme disease. Isn't that great?" With a big, genuine smile on his face.
I said, "Noooo! It's not great! I don't want to have it!" But I laughed, because I knew what he meant. Most of his patients are glad to finally hear that news.
I had only been sick a few months before that, and went straight from my GP to him instead of getting misdiagnosed by many specialists first, and I already believed I had Lyme before I got there.
Apparently most of his patients are incredibly relieved to finally be taken seriously, get a diagnosis at all, one that explains all their symptoms instead of just a few, and offers hope of recovery.
Since most doctors dismiss us with the excuse of a negative test, we start to think that if we had a very positive test, then they would have to take us seriously.
But actually, people with very positive tests have still posted that they have been dismissed by ID doctors and others, who looked at the clearly positive Western Blot and told them, "I'm sure it's a false positive," or "You used to have Lyme, but you don't any more."
A positive test may make it slightly easier to get insurance companies to pay for drugs.
Don't worry too much about the test. It won't make a huge difference either way.
There is Lyme everywhere. But even if there wasn't, if you got it 30 years ago, then the question would be "Where was there Lyme 30 years ago?", not "Where is there Lyme now?"
But because you recall getting bitten in first grade, you can now tell them exactly where there was a tick with Lyme that year.
And if your children did get it from you, then it wouldn't matter where the ticks are, anyway.
Saying "There's no Lyme disease here" when confronted with a person with Lyme disease seems like a response that should be reconsidered in the face of obvious evidence that there IS Lyme there.
Probably you could collect quotes from Lyme patients in every state who have been told there's no Lyme there. I wonder where it's been hiding, then? And how we were all so lucky to stumble onto it in its well hidden location?
And if it were nicely hidden in one secret hole somewhere--maybe it's in Washington, D.C., since it's not in a state, haha--couldn't we just go in with some tick-killing pesticide and get rid of it for good?
Anyway, we have all been through some of the same thoughts or experiences as you. Go to a good LLMD for a clinical opinion based on your symptoms, regardless of your test results.
If you do have Lyme, then you have hope of getting better, and now you are finding out where you can get help.
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