Genomic or Plasmid B burg: NEGATIVE Plasmid - B burdorferi: NEGATIVE
I appreciate all the support and knowledge I've gained while I was waiting on these results, but I guess now I'll just keep looking for answers.
I know, I know, "clinical diagnosis", but I'll never get that up here in Alaska...and I'll never convince my husband to look elsewhere with a negative test.
Maybe, just maybe it's something else. I saw the internal med doc yesterday, and she is "going to review my previous records and meet with me again on Oct. 20".
I have an appointment with a neurologist in Anchorage on Oct 16.
I wish you all the best in your treatment and recovery. Thanks for listening.
Fading out of the "lyme" light now...still searching for answers.
Posted by Cobweb (Member # 10053) on :
I cried with relief when my tests came back, and feel so fortunate my test read positive.
I feel so badly for you Tamera. That's almost worse than a Lyme Positive test-because it leaves you in Limbo Land- knowing there is something terribly wrong...
But please don't fade away-just because of a negative test, it doesn't mean you have to go. Please keep us informed on this journery of yours...
Unless you feel you have to put your efforts elsewhere-as they say "When going through Hell, keep moving."
But do check back with us.
Take Care, Carol
Posted by adamm (Member # 11910) on :
Sorry you don't have any answers ...
Hope it turns out be something less awful, though.
Posted by TerryK (Member # 8552) on :
Actually, even Steere (leader on the opposing side of the lyme wars) says that 18 and 23 NEVER show up in controls. That seems to indicate exposure and if you have symptoms, it seems clear that you should explore this angle further. Often a trial of abx will allow more bands to show up.
Before you look elsewhere, please spend some time learning about testing issues. I'm not a doctor but I'd say these results indicate that you may well have lyme.
Go to the top of the medical forum and read about Dr. C's explanation.
Good luck.
Terry
Posted by Michelle M (Member # 7200) on :
Oh, Tamera, Tamera!!
Did you read the Western Blot explanation posted above???
That might be termed "negative," but to someone who is knowledgeable about lyme, it is anything but negative.
In the presence of lyme-like symptoms and a thorough history and evaluation, it is NOT a negative test.
Notice the bold? Every one of the bands you had a reaction on is a lyme specific band.
Do you suppose that is just a coincidence?
NOT likely.
23-25 is a double-starred band!!
If you have a positive on even two of these significant bands, the chance that you have lyme is somewhere upward of 90%.
Don't be so hasty ... it would be a big mistake, in my non-medical opinion!!
Stay warm up there!!
Michelle
Posted by bettyg (Member # 6147) on :
tamera, ditto what michelle said on the bolded comments she made!!
read dr. c's explanation of western blot at top of medical posted by lymetoo/tutu!
continue educating yourself ad then when you feel it's time to go, go then, but we see things you do NOT since it happened to us too! Posted by Geneal (Member # 10375) on :
Dear Tamera,
I was unlucky enough to have my Western Blot through Quest.
The only band that showed positive was IgM 23.
Based on the fact that I had already had every known serology test run on me
Including a complete ANA panel, etc., which were all normal,
A duck actually diagnosed me with Lyme due to testing and symptoms and started treatment for me.
Your Western Blot looks like Lyme to me. I am not a medical doctor, but
I think you should pursue Lyme as a possible/probable diagnosis.
If you were my child and that was your WB, you would be getting treatment for Lyme disease.
Don't throw out the bath water with the baby just yet....
I realize due to your location, a LLMD would be difficult to find.
You really need to read Dr. C's Western Blot explanation.
You don't need to be CDC positive for Lyme. That is just their requirement for epidemiological tracking.
You can challenge your system by 30 days of antibiotics, wait ten days and retest.
There are people here with Lyme that have completely negative Western Blots, but they still have Lyme disease.
Please, please say you will pursue this.
Right now, based on your symptoms and WB, you really need treatment for Lyme disease.
BTW, my WB was the only test that ever showed a positive anything.
You are a nurse, right? Can you not find a doctor who is willing to think
"outside the box" and treat you?
I am sending you positive thoughts and prayers.
Your WB says you have "more" Lyme than mine ever did.
Please pursue this and keep us posted.
Hugs,
Geneal
Posted by sixgoofykids (Member # 11141) on :
Tamara, I understand your predicament. My daughter is being treated on a weaker test than that with AMAZING results!!!! She has mostly cognitive symptoms and has gone from needing two or three hours for a math test to finishing it with the rest of the class.
She has gone from 4-5 hours of homework per night to finishing everything in school. It's utterly amazing!
I would suggest asking your doctor to give you some meds for a month, then take a couple weeks off, then retest. Have him call IGeneX for specific instructions on this.
Don't give up on Lyme ... with a test like that plus syptoms, it's clear that is your problem.
If you absolutely cannot get meds, go on an herbal protocol. My LLMD likes Cowden.
Posted by Polaris (Member # 11391) on :
The fact that you made some antibodies to the 31kd and 39kd bands should be screaming to your doctor. Nothing else, besides Borrelia Burgdorferi, is known to make those antigens to which you have made antibodies.
This isn't even mentioning your positive 23-25kd bands which are antibodies to OspC. Also, the IND 93, which is DNA material from Borrelia. The positive 58kd band is noteworthy too. I read a Scottish study where about 2/3 of borreliosis patients have that heat shock protein.
[ 13. October 2007, 12:08 PM: Message edited by: Polaris ]
Posted by 5dana8 (Member # 7935) on :
Tamera
I hope you can find some answers soon.
Just thought I would give this link in case you change your mind. Please keep in mind any test from any lab is 50% inaccurate ~
"reasons why you can still have lyme & test CDC negative:
"Many would say the " +/-" equivocal ["IND"] bands are not significant. The problem I have with that, is that there are "-" negative bands. The lab has no trouble calling some bands negative. So they must be seeing something when they put "+/-" at some bands.
The only thing that makes sense, is that there is a little bit of that antibody present in your serum. If the "+/-" equivocal is reported on the borrelia associated bands, it is usually significant, in my clinical experience. This is a strong clue that I am on the right track.
Instead of ignoring these, they should be a red flag to keep pursuing a laboratory diagnosis. Giving patients 4 weeks of antibiotics (usually tetracycline, 500 mg, 3 times a day), will convert a negative or equivocal Western blot to positive in about 36% of cases.
As mentioned, if these positive blots are found by specialty labs, over 99% of those patients will respond to antibiotics."
Dr C:
18: An outer surface protein.
22: Possibly a variant of outer surface protein C.
23-25: Outer surface protein C (osp C).
28: An outer surface protein.
30: Possibly a variant of outer surface protein A.
31: Outer surface protein A (osp A). 34: Outer surface protein B (osp B).
37: Unknown, but it is in the medical literature that it is a borrelia-associated antibody. Other labs consider it significant.
39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.
41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody.
45: Heat shock protein. This helps the bacteria survive fever. The only bacteria in the world that does not have heat shock proteins is Treponema pallidum, the cause of syphilis.
58: Heat shock protein.
66: Heat shock protein. This is the second most common borrelia antibody.
73: Heat shock protein.
83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.
93: The DNA or genetic material of Borrelia burgdorferi.
In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93."
[ 13. October 2007, 12:08 PM: Message edited by: Lymetoo ]
Posted by Cobweb (Member # 10053) on :
I don't remember the specifics of the bands-but i do remember my daughter's LLMD commented that she considers the IND bands positive-because "something is reactivng".
Posted by daisys (Member # 11802) on :
Tamera, I had 2 tests come back completely blank--totally negative.
My LLMD ran one more test. It's called CD57, which is the name of a particular white cell. It seems that lyme disease is the only reason for this particual white cell to be suppressed.
Anything 60 and under is considered definitive for lyme disease, and mine came in at 50. So, now I'm being treated.
It might be worth a try to do research to show your doctor, and maybe he'll run that test for you. It is controversial, because some say we don't know everything yet, and maybe something else suppresses that cell. But, it's been very consistant with people who have lyme.
Hopefully, your doctor is open to discussing all the information in this thread. Just giving you a course of doxy or something, and seeing your response, might help him make a diagnosis too.
Posted by CaliforniaLyme (Member # 7136) on :
Tamera, it's been said.
I know it sounds crazy, perhaps...
But if you do some reading you will find Michelle M is always right*)!
Glenn Edward Killion never had a single positive Lyme test but after he died Dr. Paul Duray found Lyme spirochetes in his heart and his brain.
You may VERY WELL not have Lyme disease but the blood tests are not what to base that on.
I hope you got tested for the other TBDs Babesiosis and Anaplasmosis-
Take care- Sincerely,
Posted by lymednva (Member # 9098) on :
Tamera,
My Igenex tests read negative, also. I do have a couple of positive and indeterminate bands, though.
As soon as I began treatment I knew I had Lyme, from the herxes. I also have tested positive for Babesia, a co-infection.
You need to see a LLMD,, although it will not be inexpensive, given your location. At least get started on treatment, before you get worse.
You may be able to find a local doc who will work under the guidance of an LLMD to keep your costs down.
I went untreated for over 40 years, looking for answers for the last ten or so of those years.
The sooner you get stated on treatment, the better your chances for a quicker recovery.
Chat with us tonight, we can help you through this!
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by CaliforniaLyme: Tamera, it's been said.
I know it sounds crazy, perhaps...
But if you do some reading you will find Michelle M is always right*)!
That's so true!!
Sarah, maybe you need to post Killion's story again.
Posted by roro (Member # 13383) on :
the 23-25 band is specific for lyme. that one, along with the indeterminates would make it positive. the flag in the program that prints out the "positive" or "negative" message looks for two positive bands, it isn't smart enough to take into consideration which ones are more important and when the clinical diagnisis adds to the suspicion.
I fear that she has left the board and not come back
does anyone have her e-mail? can the admins e-mail her to just tell her to please come back and read our responses?
Posted by Ann-OH (Member # 2020) on :
Did you try to send a private message? Ann - OH
Posted by bettyg (Member # 6147) on :
ro, she posted after midnight so that indicates she's like me; a night owl and will come back then.
UNLESS SHE MARKED BOX NOT TO GET REPLIES, she will get these.
remember, we were ALL IN DENIAL at one time about our lyme or POSIBLE LYME! Posted by Michelle M (Member # 7200) on :
Up for our Alaska friend!
Posted by nan (Member # 63) on :
I hope she will check back to hear your good responses. Up again
Posted by Michelle M (Member # 7200) on :
I tried to contact her through her MySpace but couldn't, so I resorted to more devious means!!! Hope it works!
Michelle
Posted by hshbmom (Member # 9478) on :
Tamera was in chat last night. She'll be back.
Posted by Lymetoo (Member # 743) on :
YEA! Posted by roro (Member # 13383) on :
she was in chat last night. she is in deep denial.. I can tell because I was there, in denial, listening to the majority of the doctors saying I didn't have lyme and discarding the opinions of the few who thought I did for over ten years.
if you do come back, here is what got me out of my denial. Take antibiotics. if you get better, then you know as a nurse there is no other explanation of why antibiotics would make you better other than an infection. (I also had the reinforcement that steroids made me worse)
Posted by timaca (Member # 6911) on :
check out viral infections too. Go to www.hhv-6foundation.org. Read lots there...read some of the patient stories too.
EBV can cause neurological symptoms. Ask the neurologist that you're going to see:
That test is suspect and looks lyme-like. to me. (blah, blah, blah... no medical experience but you have. )
My first WB had one band 35+ (not even multiple plusses or IND).
2 years into treatment I came up CDC positive. Heh, go figure. Apparently, I had been sick for too long to still be making antibodies by the time I was diagnosed.
An LLMD told me that some of their sickest patients fall into this category.
The thing is this test that is almost positive in no way rules it out either.
ps. open the tinyURL link in Lymetoo's post it explains things in more detail. also in that article is this: "An example of the CDC's criteria of a blot test, is if a patient has the band pattern of 41, 45, 58, 66, and 93, the CDC would call it positive. But if a patient has a 23-25, 31, 34, and 39 band pattern, they would call it negative.
This is despite the fact that this second pattern of antigen-antibody complex bands is much more specifically associated with Borrelia burgdorferi than the first pattern."
pps.
[ 16. October 2007, 02:09 AM: Message edited by: trueblue ]
Posted by CherylSue (Member # 13077) on :
Tamera, I just got back from my first visit with a LLMD, Dr. C. He thouroughly explained my Igenex western blot.
He definitely would consider your IgM positive. 18 and 23-25 are Lyme specific. IND's are weak positives.
If you have the symptoms with those test results, you should be treated.
Sorry,
CherylSue
Posted by Pam S (Member # 13144) on :
UP!
Don't give up! Then they win! Please rethink your decision - These pages have been great and they may be the only support system you have.
Posted by barksplinter (Member # 13249) on :
Dr. J. explained band 18 this way. If a blind man grabs an elephant's leg or tail he knows he has a hippo, rhino, or elephant. But, if a blind man grabs an elephant's trunk... HE KNOWS HE HAS AN ELEPHANT.
If you have ANY sort of positive on 18; IND, +, or ++, you have an elephant!
You have Borreliosis!
You have Lyme!
Posted by Carol in PA (Member # 5338) on :
Tamara posted on her other thread that she would be out of town for a few days to get a medical procedure done.
I expect she'll check in when she is able.
Carol
Posted by tdtid (Member # 10276) on :
Yes, she's back and had started a new thread with an update. I'll respond to this in hopes of bringing it back up for her although she's seeing another dr. tomorrow.
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