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Posted by adrenalinchick97 (Member # 6204) on :
 
I am so upset. I am not sure what to do. Today i got my Western Blot test and here are the results.
18 -
22 -
23-25 +/-
28 -
30 +/-
31 +/-
34 -
37 -
39 +/-
41 +
45 +/-
58 ++
66 +/-
73 -
83 -
93 -
This is after i have been on antibiotics for almost 3 weeks. My LLMD appointmemnt is on November 11th.

So here is what i am thinking about doing. I am getting off my meds doxy 300mg/flagyl for two weeks and i am going to redo the western blot.

I have a Bowen positive with Babesia which was done before i started treatment. So this is what i am doing. Any coments are wellcomed.
Thanks guys.

[This message has been edited by adrenalinchick97 (edited 11 October 2004).]

[This message has been edited by adrenalinchick97 (edited 11 October 2004).]
 


Posted by TheCrimeOfLyme (Member # 4019) on :
 
Skip the neuro get a LLMD?

Some of your bands are specific for LD, including that band 41 I caught a glimpse of.
 


Posted by cootiegirl (Member # 3216) on :
 
As much as we all hope for a positive bloodtest, it doesn't mean there's no lyme if we don't. I haven't had a positive western blot yet and have been on a variety of abx for almost three years. It may take longer for you to be on abx for the ketes to get chased out into your blood to get picked up by a bloodtest.....

Have you been tested for coinfections? I was confused by your post. Do you have an upcoming appt with an llmd? Then if that's the case, you will be in good hands. They don't need bloodtest 'proof' to treat you...
cootiegirl
 


Posted by adrenalinchick97 (Member # 6204) on :
 
I did test Positive for lyme and Babesia with Bowen. My insurance doesn't accept it. That is why i tried the Western Blot. I see the LLMD in a month.
 
Posted by weeza3 (Member # 6071) on :
 

If you were recently infected like within the last 6 months or so, you would not show positive for the Western Blot test.

I think this is correct, antibodies take at least 6 mos. to be detected in the blood.

If this is not right, hopefully another person will correct me in this.
 


Posted by rosesisland2000 (Member # 2001) on :
 
Did you not have two WB tests done? The IgG and IgM?

Most LLMDs will consider the equivacals as being Positive...still, Lyme Disease is clinical diagnosis only supported by the tests.

weeza3, I thought it would show up as early as 6 weeks.

Rosemary
 


Posted by adrenalinchick97 (Member # 6204) on :
 
I was bit in 2001 but started to show bad symptoms 3-4 months ago. I did the Lyme IgG Western blot and the IgG/Igm serology which was 0.77-negative. I am getting off the abx for 14 days and redoing the western blot. When i get the form which tests should i redo? Someone please let me know. Thank you.
 
Posted by vandeb (Member # 6345) on :
 
Rosemary what is the difference in the igg and the igm.....if one is positive and the other not does that mean anything? thanks for the ingo....
 
Posted by RECIPEGIRL (Member # 5884) on :
 
Now I understand why you want the positive Western Blot----for insurance purposes & treatment.


Sorry, but I didn't catch if those Western Blot results in your first post there were from IGENEX Lab.


You may already know this, if so please disregard. I'm just answering blindly here.


IGENEX is a lab which is CLIA approved (not a research lab).


If ordered by an insurance-contracted, physician, then they may reimburse you only for the $180 Western Blot IgM & IgG.


I don't know about any other tests from IGENEX that insurance might possibly reimburse for.


As far as them recognizing Igenex for treatment purposes, I suppose that is a different story.


Here is their website if it would help:
www.igenex.com


Here is an old link by Pacbird: "19 Reasons Why a Seronegative Test Result Might Occur."

http://flash.lymenet.org/ubb/Forum1/HTML/001744.html


Also, according to Magnesium Marnie, a magnesium deficiency can cause weak immunity inadvertently affecting the outcome of testing.


You'll like this: It's a link by Melissa Kaplan explaining beautifully the western blot:
http://www.sonic.net/~melissk/wb.html


I've answered this in a hurry, so I'm sorry if it doesn't help.

I actually had to take 14 days of Zithromax 250 mg twice daily prior to taking the IGENEX Western Blot before I got a positive one.

With no antibiotics I got a negative test.

Everyone is different, so you have to do what works for you.

I'm just sharing my experiences.

We understand that the decision is all yours. Just trying to help.

Good Luck on getting a positive Test. I know it's very important in order to get treatment.

Take Care,
Jan


_____________________________________________
Vandeb:
Here is a link by Breathwork on Lymenet with a brief explanation of tests. (You will need to scroll down to her reply.) Also, see the Melissa Kaplan's link right above.

http://flash.lymenet.org/ubb/Forum1/HTML/028228.html

Jan

[This message has been edited by RECIPEGIRL (edited 12 October 2004).]
 


Posted by adrenalinchick97 (Member # 6204) on :
 
Those results are from IgeneX. Well i am going to redo it without being on ABX and see what happens. Now i have to wait two weeks before i send my test.
 
Posted by treepatrol (Member # 4117) on :
 
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.

58: Heat shock protein.

23-25: Outer surface protein C (osp C).

30: Possibly a variant of outer surface protein A.

31: Outer surface protein A (osp A).

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.

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.

66: Heat shock protein. This is the second most common borrelia antibody.


- Not present
+ Low
++ Medium
+++ High
+/- Equivocal = indeterminate (there, but not as intense as Low)

DIAGNOSTIC HINTS

Lyme is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms. The entire clinical picture must be taken into account, including a search for concurrent conditions and alternate diagnoses, and other reasons for some of the presenting complaints. Often, much of the diagnostic process in late, disseminated Lyme involves ruling out other illnesses and defining the extent of damage that might require separate evaluation and treatment.

Consideration should be given to tick exposure, rashes (even atypical ones), evolution of typical symptoms in a previously asymptomatic individual, and results of tests for tick-borne pathogens. Another very important factor is response to treatment -- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week cycle of waxing and waning of symptoms, and improvement with therapy.

DIAGNOSING LATER DISEASE

When reactive, serologies indicate exposure only and do not directly indicate whether the spirochete is now currently present. Because Bb serologies often give inconsistent results, test at more than one laboratory using, if possible, different methods. The suggestion that two-tiered testing, utilizing an ELISA as a screening tool, followed, if positive, by a confirmatory western blot, is illogical in this illness. The ELISA is not sensitive enough to serve as an adequate screen, and there are many patients with Lyme who test negative by ELISA yet have fully diagnostic western blots. I therefore recommend against using the ELISA. Order IgM and IgG western blots -- but be aware that in late disease there may be repeatedly peaking IgM's and therefore a reactive IgM may not differentiate early from late disease, but it does suggest an active infection. When late cases of LB are seronegative, 36% will transiently become seropositive at the completion of successful therapy.

Western blots are reported by showing which bands are reactive. 41KD bands appear the earliest but can cross react with other spirochetes. The 18KD, 23-25KD (Osp C), 31KD (Osp A), 34KD (Osp B), 37KD, 39KD, 83KD and the 93KD bands are the most specific but appear later or may not appear at all. You need to see at least the 41KD and one of the specific bands. 55KD, 60KD, 66KD, and 73KD are nonspecific and nondiagnostic.

PCR tests are now available, and although they are very specific, sensitivity remains poor, possibly less than 30%. This is because Bb causes a deep tissue infection and is only transiently found in body humors. Therefore, just as in routine blood culturing, multiple specimens must be collected to increase yield; a negative result does not rule out infection, but a positive one is significant. You can test whole blood, buffy coat, serum, urine, spinal and other body fluids, and tissue biopsies. Several blood PCRs can be done, or you can run PCRs on whole blood, serum and urine simultaneously at a time of active symptoms. The patient should be antibiotic free for at least six weeks before testing to obtain the highest yield.

Antigen capture is becoming more widely available, and can be done on urine, CSF, and synovial fluid.

Sensitivity is still low, but specificity is high.

Spinal taps are not routinely recommended, as a negative tap does not rule out Lyme. Antibodies to Bb most commonly are found in Lyme meningitis, but are rarely seen in non-meningitic CNS infection, including even advanced encephalopathy. Even in meningitis, antibodies are detected in the CSF in less than 20% of patients with late disease. Therefore, spinal taps are only performed on patients with pronounced neurological manifestations in whom the diagnosis is uncertain, if they are seronegative, or are still significantly symptomatic after completion of treatment. When done, the goal is to rule out other conditions, and to determine if Bb antigens or nucleic acids are present. It is especially important to look for elevated protein and mononuclear cells, which would dictate the need for more aggressive therapy, as well as the opening pressure, which can be elevated and add to headaches, especially in children.

I strongly urge you to biopsy all unexplained skin lesions/rashes and perform PCR and careful histology. You will need to alert the pathologist to look for spirochetes.

You probaly have Lyme

It has been observed that symptoms will flare in cycles every four weeks. It is thought that this reflects the organism's cell cycle, with the growth phase occurring once per month (intermittent growth is common in Borrelia species). As antibiotics will only kill bacteria during their growth phase, therapy is designed to bracket at least one whole generation cycle. This is why the minimum treatment duration should be at least four weeks. If the antibiotics are working, over time these flares will lessen in severity and duration. The very occurrence of ongoing monthly cycles indicates that living organisms are still present and that antibiotics should be continued.


[This message has been edited by treepatrol (edited 12 October 2004).]
 


Posted by bpeck (Member # 3235) on :
 
ADChick:

Have Igenex do a PCR on whole blood after you're free from abx for about a month.

I'd stick with Igenex.
It's your choice as to whether you want to repeat the Western blots that closely.

Barb
 


Posted by adrenalinchick97 (Member # 6204) on :
 
Hey guys. I really need your input on this. I was suggested to do PCR with Igenex. Has anyone done it and what were the results.

I talked to the Doctor at Igenex and he suggested the Western Blot but he also said that it won't chage the outcome if i get off the ABX. Now that is not what some doctors are saying.

All i know is i am off the ABX already and just need find out which test to do. If you were in my situation which test would you do?????

[This message has been edited by adrenalinchick97 (edited 12 October 2004).]
 


Posted by rosesisland2000 (Member # 2001) on :
 
adrenalinchick97, I asked,

"Did you not have two WB tests done? The IgG and IgM?"

I asked this because you only posted one of the tests. There are two Western Blots and you only gave one of them. Which one did you post and which one did you leave out?

As for the Igenex WB testing, they will send back two pages of tests, one is the IgG and the other the IgM. Which on were you posting about?

I just posted this statement on two other posts this morning...does anyone read other posts other than their own when asking the same question? Sorry just herxing, and when I keep seeing the same question over and over right there on the first page.

I just can't believe my eyes, not to mention the same question on pages 2-2,000 or so. Really sorry, just needed to rant for a minute there.

You stated that, the IgG/Igm serology which was 0.77-negative Sorry, but that is NOT how the IgG and IgM are reported.

They (IgG and IgM) reported results come to you like the list in your first post. I think you have things confused a little.

So, let's start by seeing both the IgG and the IgM...you don't say with the results were from on your first post.

All you need to know about the WB tests, whether IgG or IgM is in the Links for New LymeNet members. That's why I always say to bookmark that post, as you will want to return to it time and time again.

But, here's a great link for explaining the WB testing....you and anyone else that may be reading this should take a look-see at the following link:


http://flash.lymenet.org/ubb/Forum1/HTML/026659.html

I'm still perplexed by which test you are talking about.

Rosemary

Please don't take anything I say today personally and I am trying to get off here as not to through out more diatribes as I've been here since 6:30 more than I should be here. That's 4.5 hours and I still haven't gotten through all the posts yet...maybe later.
 




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