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» LymeNet Flash » Questions and Discussion » Medical Questions » Immunosciences

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Author Topic: Immunosciences
CBH
Junior Member
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Can anyone tell me how good Immunosciences are for antibody and WB testing? Thanks
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treepatrol
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Personaly I would go with igenex.Thats if you think you have lyme or coinfection.It still should rely on LLMD clinical decision.
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WELCOME To LYMENET

Here's more goodys! A typical response to newcomers.

Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.

Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.
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( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test. )
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[This message has been edited by treepatrol (edited 28 December 2004).]


Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003  |  IP: Logged | Report this post to a Moderator
CBH
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Hi,

Thanks a lot for that information. I will plough through it.
I only asked because my doctor uses that lab and has already done some tests for me. I am waiting for the results but I am wondering whether they have any chance of being positive, and whether the lab is reknowned or reviled.


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treepatrol
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Its possible to get a possitive WB but only likly if there testing for at least 16 antigens also your chances go up if you are on high dose of abx at the time say week before test, by killing off the spirochetes thus floating more of there pieces in your blood stream.
That works well with 3 day urine test also but theres a lot of factors involved how many bugs are in active form or cyst form,is it a new infection or old, the cycle of the spirochetes they are on there on cycle different from normal infections.

Did you have a rash at bite area ?? dont panic if you didnt because I have been bitten 70 or 80 times and never had a rash.
If you have a rash at the bite and you saw a tick there you deffinatly have lyme.

Get a LLMD there better at this than normal Drs.


Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003  |  IP: Logged | Report this post to a Moderator
CBH
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My doctor asked for the test as I have been ill with Lyme-like symptoms for 3 and a half years after being bitten by flies in a foreign country. I had an atypical rash of some sorts but I live in UK where Lyme is not so prevalent so diagnosis is rare and dependent on knowledge of tick bite and rash for investigation purposes.
I am also having antibody tests done for Erlichosis and Babesia, mycoplasma and chlamydia stealth pathogens.
I have had no antibiotics so far (except for short-term courses of Doxycycline and Metrodonizale early this year for specific problems).

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dontlikeliver
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Hi CBH,

I am in the UK also, and unfortunately the reason it's "rare" in the UK is because of doctor ignorance. They don't know how to recognize it, therefore it doesn't usually get diagnosed, this equals - "it's rare".

It isn't rare at all - it's only GP literacy on the subject that is VERY rare, but it is hugely underdiagnosed and equally under-treated IF treated at all.

My GP, who is sort of supporting me in my private treatment by providing ONE private prescription for me on my LLMD's orders, is very ignorant about Lyme Disease DESPITE me trying to educate him for over a year now. He does not want to know. When he recently said to me "I treat other people with Lyme Disease you know" in response to something I was trying to make him understand - I asked him how. His response was: If I think they have LD I watch and wait. (not sure what he's waiting for though).

Have you visited Eurolyme?
http://health.groups.yahoo.com/group/EuroLyme/?yguid=143366118

DLL


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CBH
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Hi! How right you are. I am with a private doctor who lectures globally and have only began to get help since paying for her expertise. I will check out the EuroLyme site.
Thanks

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RECIPEGIRL
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Hi CBH,

Welcome to Lymenet. I'm thrilled to see that you are taking charge of your health.


Lyme Disease is really a do-it yourself disease. Hope you will take Treepatrol's advice about seeing a Lyme Literate Medical Doctor.


You can go to SEEKING A DOCTOR section and someone will privately e-mail you an LLMD's name. A support group from your state can be helpful and Lyme Disease Association (LDA) is always available for everyone.


Just click on the LDA Logo on the left column of your screen; Click on Doctor Referral.


I wasted a year thinking I didn't have Lyme Disease (LD) because my Igenex was negative. Some of the sickest folks have negative Western Blot results.


I had to find an LLMD who prescribed the ABX, Zithromax 250 mg twice daily for like 10 days to elicit a positive Western Blot from Igenex. The ABX pulled the bacteria into the bloodstream and I finally got a positive Igenex.


However, the LLMD diagnosed me with LD on the first office visit without the Igenex test results.


I sure hope your doctor knows that LD is a diagnosis based on symptoms. The test only supports the physician's clinical diagnosis.


In case your WB test returns negative, here are 19 reasons for a negative LD test:


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


Also, wanted to warn you about steroids. Do not let anyone give you steroids as this will further depress your immune system and the Lyme will flourish.


Also, if you do develop any rash or a bulleye's rash, it's not a bad idea to get a disposal camera and take a picture. Place a coin beside the rash for size comparison. Secure the photos & keep them forever.


Here's a great booklet I was given at my last office visit. You can download your copy. It has a 7-page comprehensive symptom list and is great at explaining LD.


The title is:
"Lyme Disease and Associated Diseases: The Basics."

It's published by the LDA of Southeastern Pensylvania.

Click on: http://www.lymepa.org


To download the entire Booklet-- When you reach the site, click on the Booklet icon located below the Lyme Teens icon.


You deserve to know with certainty if you have Lyme Disease, as it is a potentially debilitating disease if left untreated or if it is undertreated.


Also, an LLMD will eventually want to check for tick-borne co-infections such as Babesia, Erlichiosis, Bartonella and mycoplasmas. LLMDs each have their own protocol to fit each patient.


So, please keep asking questions, as we understand firsthand how overwhelming this quest can be.


Well, happy reading & let us hear from you.


Best Wishes,
Jan

[This message has been edited by RECIPEGIRL (edited 28 December 2004).]


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CBH
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Thanks very much Jan. I live in the UK and am very unsure of where, or if, LLMDs exist in this country! My doctor suspects it but is no Lyme expert especially, so I will just hope she humours me when I ask for more tests after a short course of antibiotics.
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dontlikeliver
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CBH,

Do you mind emailing me and letting me know who this private doctor is? It would be of great interest to others in the UK.

Virtually all Lyme patients in the UK are unable to get their NHS GP's to support them in treatment, if those patients have managed to go outside the NHS system and get a proper diagnosis. I know only of one such patient in the UK and her doctor has basically blackmailed her by letting her know that if she lets others know what he's doing (i.e. treating her long-term on NHS) he will stop her treatment.

There is only one or two doctors that I'm aware of who are up to the job, both private, in the UK.

Just click on my profile link, and emails' there.

DLL

[This message has been edited by dontlikeliver (edited 28 December 2004).]


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treepatrol
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http://www.lymenet.org/SupportGroups/Europe/
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003  |  IP: Logged | Report this post to a Moderator
CBH
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Its done dontlikeliver.
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