I recently got back blood results, and am curious about a few of the items.
While my doctor seems to think I do not have any tick related illness, some areas are out of range.
Babesia MCV and MCH are just below normal range.
Absolute Monocytes are just below as well.
B. Burgdorferi: 2 non-reactive and 1 reactive.
I had more blood taken yesterday to explore further. Does anyone know if this is common?
Is it possible to have a few out of range/reactive items and NOT have a tick related illness?
Feel free to let me know. Thanks! jwick25
Posted by Tincup (Member # 5829) on :
Dear j...
I wish I had a bucket of ice cream for every negative test that was wrong.
Of course I'd be the size of a John Deere tractor by now.. but I'd also be happy!
More often than not.. folks who have been sick the longest have negative tests. The spirochetes don't like hanging out in the blood because they get beaten to pieces when there, by the immune system.
If possible they like to exit the blood stream and dig into the good stuff.. like muscle tissue, joints, bladder, brains, etc.
When that happens the antibodies don't get produced and the tests, therefore, can't pick them up.
You said..
"Is it possible to have a few out of range/reactive items and NOT have a tick related illness?"
ONLY if it is possible to be a little bit pregnant.
PS. I am NOT a doctor... and this is my opinion.
Posted by jwick25 (Member # 15190) on :
quote:Originally posted by Tincup: Dear j...
I wish I had a bucket of ice cream for every negative test that was wrong.
You said..
"Is it possible to have a few out of range/reactive items and NOT have a tick related illness?"
ONLY if it is possible to be a little bit pregnant.
[/qb]
Hi tincup,
Yeah...that "little bit pregnant" commercial drives me nuts every time I see it...lol!
It's weird because where I do fall out of range,
it's only by a very little bit. At least for now.
Yet, considering that I had a bull's-eye rash last May and my symptoms,
it seems like it would be a huge coincidence when, on top of that,
some of my results are out of range/reactive.
I still have results from the hospital as well as additional lab tests to wait for.
My doctor (won't be for much longer), said he highly doubts I have it. We'll see.
My Rheum appt. is in 2 weeks. I feel like I can't wait that long,
but I need to suck it up because many people have to wait MUCH longer!
I had the choice of seeing a Rheum with a BAD rep tomorrow,
or a Rheum with a GREAT rep in 2 weeks. I rather do it right the first time.
Thanks for your input! I was very curious to see what people on these boards have to say.
jwick25
[ 21. April 2008, 01:32 PM: Message edited by: jwick25 ]
Posted by Aniek (Member # 5374) on :
Lyme is a clinical diagnosis, but most doctors refuse to diagnose it without a positive test. I have heard stories of doctors refusing to diagnose it with positive tests.
You really want to see an LLMD, a doctor who is knowledgeable and experienced in treating Lyme. You can post for a doctor in the seeking doctors forum.
Remember that Lyme suppresses the immune system so many people won't make the antibodies that are needed for a positive test.
Posted by Lymetoo (Member # 743) on :
What test did you have???
I would not stop until having a Western Blot done through IGENEX LAB in CA.
quote:Originally posted by Lymetoo: What test did you have???
Hi Lymetoo,
They did Western Blot and Eliza (Elisa?). Looking at the results, it appears that they tested for several types of tick-related illnesses.
Ironically, when I asked the doctor about other labs that are supposed to have more accurate
testing methods, he told me that the only one he knows about is Igenex in CA.
He said something was recently published about that lab and how EVERYONE'S tests come back positive from there.
I can't wait to get a new doctor. jwick25
[ 21. April 2008, 01:33 PM: Message edited by: jwick25 ]
Posted by lymednva (Member # 9098) on :
jwick25 said:
quote: He said something was recently published about that lab and how EVERYONE'S tests come back positive from there.
That's an "'old wives tale" to add to the others this doc is spouting.
i have yet to have a positive test, from igenex or anywhere else.
i know I am not alone in this.
i have been treated with a clinical dx for 2 years now.
I've traced my Lyme symptoms back to my childhood...and I'm about to become a grandma, so that's a l-o-n-g time ago.
i know my body hasn't made antibodies since at least the mid-70's when i started having rubella vaccinations prior to each of my pregnancies.
never did show immunity, so my doc decided 3 was enough, there must be something unusual going on. Posted by Lymetoo (Member # 743) on :
Well, he's wrong because mine was negative and a ton of others here had the same result.
Which lab was used for your testing?
Yes, go with Igenex, or you will know nothing.
Posted by jwick25 (Member # 15190) on :
quote:Originally posted by Lymetoo: Well, he's wrong because mine was negative and a ton of others here had the same result.
Which lab was used for your testing?
Yes, go with Igenex, or you will know nothing.
Hi,
My tests were done at Quest, which I have been reading has a rep for negative results.
I also had blood work done at a local hospital, and I should have those results in a few days.
I am going to talk to the Rhematologist at my May 6th appointment about this. He has a good reputation for being extremely thorough.
Just in case that does not work out, I know a primary care doctor who has
sent blood work to both local labs and the lab in NY for patients. It's just a matter of the timing
and when I can change primary care doctors. I have to be careful as I have a work disability claim in the works.
It's just amazing how much confusion and contradiction surrounds these illnesses. I hope that
improvements are made for the sake of those who suffer from these things.
jwick25
[ 21. April 2008, 01:34 PM: Message edited by: jwick25 ]
Posted by jwick25 (Member # 15190) on :
quote:Originally posted by lymednva: I've traced my Lyme symptoms back to my childhood...and I'm about to become a grandma, so that's a l-o-n-g time ago.
Wow...that is amazing! You would think that doctors should know all of this by now? Why is there such confusion about these diseases?
I am FAR from an expert in this stuff - which is what led me to these boards - but shouldn't the medical community know so much more about it by now?
What I do know is that the next time my doctor tells me that I am "young" and "look ok," I should have
the right to smack him.
[ 21. April 2008, 01:34 PM: Message edited by: jwick25 ]
Posted by Lymetoo (Member # 743) on :
jwick...I've been ill myself for 49 yrs. The medical establishment DOESN'T WANT TO KNOW ABOUT LYME. They stick to their guns about it being cured with 2-4 wks of abx.
You need to come to grips with the fact that none of the drs you are trying to see will know anything about treating this disease.
Begin your search for an LLMD, or you will be ill for the next "49 yrs."
Posted by jwick25 (Member # 15190) on :
Well, my latest blood results should be back today.
I'm so curious to know the results, but I guess I should just figure they are negative.
This latest round was to dig deeper into the possibility of Babesia (spelling?) and one of the other tick-related illnesses.
I feel like I am trying to will the phone to ring...lol.
Hope everyone is well... jwick25
Posted by Lymetoo (Member # 743) on :
If the tests are from Quest, you won't find out much. If anything is + it will be a miracle.
Keep us posted!
Posted by adamm (Member # 11910) on :
If anything is + it will also more than likely mean you have an
infection. Can you get to an LLMD? One of them will know
what to do regardless of any test results.
Posted by disturbedme (Member # 12346) on :
He said something was recently published about that lab and how EVERYONE'S tests come back positive from there.
That's a BIG FAT lie. My IgeneX Western Blot was completely negative. Only one positive band, 41++ IgG, which doesn't really mean much, sadly.
So yeah...
Posted by jwick25 (Member # 15190) on :
Well, I got some results back from Quest yesterday. Under Babesia, it indicated "past infection."
These results were from 04/10. My doctor is supposed to call me today because he now has the results from 04/18...which I have not yet seen.
I'm hoping that "past infection" is promising...? That this means something was detected?
Posted by disturbedme (Member # 12346) on :
Jwick, that definitely seems promising. BUT, I wouldn't expect much from this doctor if he's not lyme literate. He'll probably tell you since it says "PAST INFECTION" you no longer have it and it's gone now and so no need to treat it.
More than likely he'll say something to that effect if he isn't educated in the field of lyme/co-infections. And MOST doctors are not and they're very close-minded about it.
Make sure you find a LLMD (Lyme literate MD).
Posted by bettyg (Member # 6147) on :
jw,
your story of past infection reminds me when i had my rashes NOT diagnosed and 4 biopsies were done at separate times.
twice it showed UNKNOWN BUG BITE!!!! GUESS I KNOW IT WAS A TICK; DON'T I!!! Posted by jwick25 (Member # 15190) on :
This is maddening, I say...maddening!
I was so happy to see "past infection" on the test results last night, I practically started crying!
At least this is a step. I will definitely make sure these results are looked at by an LLMD!
jwick25
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by jwick25: I will definitely make sure these results are looked at by an LLMD!
Thank goodness!! Posted by jwick25 (Member # 15190) on :
I wonder if they had been checking for tick-related illnesses from 4 weeks ago when I was in the hospital,
would the results have been different?
It's weird because I am almost starting to feel a little better. Is that common? Does it all come and go like that?
If so, are you less likely to test positive during those times when you feel a little better?
I just want those results in my hands so that I can take them to the right doctor. Posted by jwick25 (Member # 15190) on :
Ok, I finally heard back from the doctor's office today. I was told that the doctor said that the test result that showed a past Babesia infection is inaccurate and wrong.
What??!? When the tests are negative, he says that the results are accurate and could not possibly be wrong. Then, when a result indicates a past or longstanding infection, he says that that particular test is inaccurate and wrong.
Is he serious? I understand that these tests are often inaccurate, but for him to use that excuse when it suits him is ridiculous!
When I asked if Quest tests are often wrong, he told me that they are very accurate. Yet, the one test that indicates something is deemed wrong.
Thank goodness I have my specialist appointment on Tuesday. At that time, I am changing primary care doctors. There is nothing more they can do for me.
I just can't believe that this jerk actually still has patients. Sorry for venting. It just makes me angry when a doctor can sit back and watch a patient get sicker and sicker...and not care.
Posted by Blymey (Member # 15215) on :
What was your C-Reactive Protein test (CRP) or your vitamin D levels? The problem with Lyme and tick related disease is that because of the nature of the bacteria (it invades the cells and produces an enzyme that hides it from the killer T-cells) there are a series of different tests that should be done to indicate whether or not you have lymes or other tick-borne diseases.
Hopefully your doctor is lyme literate.
Good luck!
Posted by jwick25 (Member # 15190) on :
Hi Blymey,
I took a look at my results, but I cannot find those tests on the list. I may be overlooking them, but I don't think they are included.
My primary care doctor made it obvious that he knows little about (and cares little about) this. However, my Tuesday appointment should be better.
Thanks!
Posted by jamescase20 (Member # 14124) on :
I would get a live blood microscopy done too, and WATCH them do the test...look for swimming or hovering sticks (keets) or dots...babies....babs...etc.. RECORD it with a cam, if they wont let you watch them and record it, RUN away. There are live blood micro videos on youtube to see what I am sayin. If your infected enough to be suffering, one drop of blood should show you some bugs.
Posted by jwick25 (Member # 15190) on :
Hi jamescase20,
Thanks for the message. I'll definitely keep this in mind. I get scared reading that if these illnesses are caught and treated immediately, you can be cured forever,
but if you go several months undiagnosed, you may have problems for life.
Thanks, again!
Posted by jwick25 (Member # 15190) on :
Hello. Just an update. I had my appointment with the Rheumatologist today. While no official diagnosis was made just yet, he suspects that I have a tick-related infection.
Luckily, I had the picture of my rash from last year to show him. He said is was a textbook rash. He is putting me on a 30-day treatment of Doxycycline.
He is also sending me for additional blood work tomorrow to test for Celiac disease, C-Reactive Protein, Vitamin D and several other things. He is not, however, having me retested for all of the tick-related illnesses.
I believe he wants to be able to rule out other problems in order to feel confident in a diagnosis of a tick-related illness.
My concern is that because my past results indicated a past infection of Babesia (which my PC doc ruled "inaccurate"), would this be the appropriate treatment?
Any advice about this? Thanks!
Posted by bettyg (Member # 6147) on :
fyi, iris joined and posted this 3 times in 3 different areas; ignore this one please. ******************************************
iris did start HER OWN THREAD about cd 57, etc...please show your answers for her there! thanks all!
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