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» LymeNet Flash » Questions and Discussion » Medical Questions » Dr. says I don't have lyme

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Author Topic: Dr. says I don't have lyme
Tina528
Junior Member
Member # 51125

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Below are my tests results from almost a year ago. I had the bulls eye rash way back in the early 1980's so if I have Lyme I've had it and have been untreated a very long time. I only tested reactive on Igg band 41 which the dr. says means nothing at all, but my Elisa was highly positive. My dr. was willing to do a ten day trial of doxycycline and I'm thinking why bother, if I have Lyme I've had it almost 40 years, I highly doubt ten days of doxy will help. I am so tired of feeling bad with all these symptoms.

Results of Elisa:
LYME DISEASE ANTIBODY SCREEN 1.72 EIA VALUE EIA VALUE
EXPLANATION OF EIA VALUE

<OR=0.90 NEGATIVE
0.91 - 1.09 EQUIVOCAL
>OR= 1.10 POSITIVE

Results of Western Blot:
Component Your Value Standard Range
B.BURGDORFERI IGG NEGATIVE
18 KD IGG BAND NON-REACTIVE
23 KD (IGG) BAND NON-REACTIVE
28 KD (IGG) BAND NON-REACTIVE
30 KD (IGG) BAND NON-REACTIVE
39 KD (IGG) BAND NON-REACTIVE
41 KD (IGG) BAND REACTIVE
45 KD (IGG) BAND NON-REACTIVE
58 KD (IGG) BAND NON-REACTIVE
66 KD (IGG) BAND NON-REACTIVE
93 KD (IGG) BAND NON-REACTIVE
B.BURGDORFERI IGM NEGATIVE
23 KD (IGM) BAND NON-REACTIVE
39 KD (IGM) BAND NON-REACTIVE
41 KD (IGM) BAND NON-REACTIVE

Posts: 4 | From Ohio | Registered: Dec 2017  |  IP: Logged | Report this post to a Moderator
sixgoofykids
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Member # 11141

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I'd find a new doctor. All a lyme test shows is exposure. If you had a bullseye, according to www.ilads.org, that's diagnostic on its own. You've been exposed.

I'd think about whether you want to treat naturally or with meds and choose a doctor accordingly. There are a lot more options now than there were when I went through treatment.

I had it over 30 years and am well now, so there is hope, but I agree, not hope in 2 weeks of doxy. Why bother? Good luck with whatever you decide!

--------------------
sixgoofykids.blogspot.com

Posts: 13439 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
t9im
Frequent Contributor (1K+ posts)
Member # 25489

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Hi Tina:

Band 41 is reactive to the filament which gives the spirochete bacteria its shape and ability to move. It is not specific to the Lyme spirochete.

In my daughters 24 Western Blots she never tested positive via CDC & IDSA standards but band 41 did show up every time. She did culture the spirochete and have a positive Lyme DNA tests.

So you shouldn't rely on the Western Blot. You can't fault your MD as he is relying on the IDSA research papers which don't publish and ignore research that is contrary to their position. You should switch to an ILAD's MD or DO.

Good luck.

--------------------
Tim

Posts: 1088 | From Glastonbury, CT | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
Robin123
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Hi Tina - you're saying you have symptoms, so you need to be seeing a Lyme-treating doctor - you can post in Seeking a Doctor for referrals.
Posts: 12578 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
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Lyme Testing has been PROVEN to be severely flawed. . . It can miss up to 70% of Lyme cases.

Scroll down to read "Why You May Test False-Negative On Western Blot" ;

https://sites.google.com/site/marylandlyme/lab-tests

Posts: 1478 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
gardengirl333
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Everyone I have talked to who has been through a successful treatment programhad a different outcome on their tests for Lyme. Some just consistently test negative.

One woman I just spoke with said her son tested neg every time for 3 yrs while he suffered in bed. He tested non conclusive on his Igenex also. Didn’t catch it until they finally did a brain scan- he got treated and is 100% better and in college now.

I tested pos on igm western blot but neg on Elisa. Got tested again and now neg on west blot too- igenex pending.

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Lymetoo
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Unless that Western Blot is from Igenex, then it's not worth very much.

The ELISA is KNOWN for false NEGATIVES. If you got a positive, that is golden. Then there is the diagnostic bullseye.

Find a real doctor.

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93322 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
hopingandpraying
Frequent Contributor (5K+ posts)
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Welcome to Lymenet! PM sent with name of LLMD in OH.

My son also only had Band 41 on the Elisa test (which is very unreliable) and he has had Lyme plus co-infections for eighteen years now. When he was tested through IGeneX Labs, more bands came up positive.

The bull's-eye rash is definitive for Lyme.

Here is Dr. C's Western Blot explanation (he is one of the top LLMDs):

"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.

These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93."

Western Blot Explanation link:
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/42077

You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!

A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.

Here is a link for them:

http://www.lymenet.org/BurrGuide200810.pdf

Unfortunately, LLMDs are far and few between. You need to go where they are.

Also most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=025539;p=0

When calling for an appointment, ask if they have any cancellations or a waiting list. Patients have been able to get in sooner by doing this.

Check the online state Lyme groups at:
https://groups.yahoo.com/neo/groups/OhioLyme/info

Maybe they can help. They would know better about OH.

Some more resources for you (including Support Groups info):

http://whatislyme.com/lyme-in-ohio/

http://www.lymenet.org/SupportGroups/UnitedStates/Ohio/

Read the books written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?" and "How Can I Get Better?". They are an excellent source of information.

Also read "Cure Unknown" by Pamela Weintraub. Get it at your local library or buy it used on Amazon.

View "Under Our Skin" for free on http://www.veoh.com/m/watch.php?v=v21055812yWtmpgB8

Btw - I know you are new to Lymenet, but please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.

To do this click where it says "Edit Post" above your post to the right of it, make your changes, then click "Edit Post" at the bottom of your post. Thanks.

Posts: 8388 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
   

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