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» LymeNet Flash » Questions and Discussion » Medical Questions » Western Blot result help!

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Author Topic: Western Blot result help!
bigbadbri
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Member # 5350

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We finally got the results on my husband's western blot. It was hard to get the doctor to send them to us. I need some help on interpretation. Here is what the test said:
IGG
18 +++
22 -
23-25 +
28 +
30 +/-
31 ++++
34 ++++
37 -
39 ++
41 ++
45 +
58 +
66 +
73 -
83 -
93 +/-

IGM
18 -
22 -
23 - 25 +
28 -
30 +/-
31 +
34 +/-
37 -
39 +/-
41 +
45 +/-
58 +/-
66 +/-
73 -
83 -
93 -

The test said positive put I'm not sure for what. I also wanted to say we continue to be frustrated. We are trying to get anyone in Oregon to help. We changed primary care physicians. This guy said he would help him get treatment. He called back later and said that he spoke to a well versed infectious disease Dr. and he said that my husband should "not" see "any" infectious disease guys because his problem is neurological. (he still has muscle twitches and weakness in his hips and thighs which is not improving. he has a hard time walking as well). So that's are help here. We actually had some hope as this Dr. seemed like he would help. He will only refer us to a neurologist. GGGRRRRRRRRRRRRRRRRR. This is driving us nuts!

Thanks for your help!


Posts: 33 | From Portland Oregon USA | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
Mathias
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IgM and IgG positive according to CDC criteria. It doesn't get more positive than that.

You also have bands 31 and 34 which are very specific to lyme but not in the CDC criteria.

Your husband has to get to an LLMD right away even if it is not through your PCP.

I actually don't understand how even an ID can deny you treatment with a Western Blot like that.

[This message has been edited by Mathias (edited 28 June 2004).]


Posts: 1250 | From New Jersey | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
Beverly
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Ditto with Mathias! I wish my WB looked like that! I had only one specific band...37 and band 41.

So sorry you are dealing with a duck...the "well versed infectious disease Dr. ..: is an idiot!!!!!!!

Find a LLMD, keep us posted.


Posts: 6641 | From Michigan | Registered: Jun 2001  |  IP: Logged | Report this post to a Moderator
PinchotGail
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Dear Big,

Read this thread http://flash.lymenet.org/ubb/Forum1/HTML/018251.html for more specifics on each band. Take care!!

Gail


Posts: 562 | From Wellsville, PA, USA | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
smiles
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I will post a forum that does a good job explaining the Western Blot.
http://flash.lymenet.org/ubb/Forum1/HTML/022767.html

Sorry you're having so much trouble getting the doctor to take it seriously.

I am not familiar with all your posts - so is your husband receiving any kind of treatment?


Posts: 160 | From MD, USA | Registered: May 2004  |  IP: Logged | Report this post to a Moderator
gopats
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You pretty much want to stay away from Infectious Disease Docs anyway. Did you post under Looking for a Doctor forum for a doctor in my area. For me, the neurologist actually helped, he got me on the right track by referring me to another doc and another hospital. But you need the LLMD first.

Once you go in for you initial appt, a lot of docs will let you conduct phone appts if you live far away, so don't let the distance discourage you. All I have to say is WOW! I'm surprised that this came back CDC positive and your doc still doesn't think it is lyme.


Posts: 298 | From Maine | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
bigbadbri
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Thanks so much for your help on this! According to what you guys referred me too, he almost couldn't be more positive. I don't get it. Why won't the Ducks even consider letting him be treating? How does it affect them poorly to treat him. I even found studies where they are trying antibiotics for ALS and neuromuscular diseases. Why do they have a fit about Lyme? It makes NO sense. It is so upsetting. The LLMD that told us he had a positive test for Lyme, then heard he had muscle twitches said he might have both Lyme and ALS. Doesn't Lyme cause ALS type symptoms but the difference it is treatable? I just don't get it!!!
Posts: 33 | From Portland Oregon USA | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
pab
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Have you contacted the Oregon Lyme Disease Network?

The website: www.junipermeadow.com/lyme

You can also get the information when you click on Support Groups and then Oregon.

The founder is a frequent poster and her daughter was very ill and now doing well.

------------------

[This message has been edited by pab (edited 28 June 2004).]

[This message has been edited by pab (edited 28 June 2004).]


Posts: 2775 | From MN | Registered: Apr 2001  |  IP: Logged | Report this post to a Moderator
fredoroberts
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Hi, Mathias and others are right.
Your husband is positive for Borrelia b antibodies. It is important to understand the Western Blot (WB) test, so I will try to elaborate. Read about it elsewhere on this site also.

The CDC criteria for a positive IgG WB is to have five of these bands present (as of 6/03):
18, 23-25, 28, 30, 39, 41, 45, 58, 66, 93 kDa

Read the test results like this:

After the band number (those above for example) a minus sign - means negative; a +/- means equivocal, not positive or negative, they can't tell; a plus sign + means positive. The more plus signs there are, the stronger the band was present on the blotting paper. You only need one + sign for the band to be positive. If a band is positive, that means it is "present". It is important to understand that one + sign means positive, period. The +/- means that they can not be sure of the presence of the band one way or another.

Your husbands IgG WB showed the following CDC criteria bands present:
18, 23-25, 28, 39, 41, 45, 58, 66, wow! Since he has eight bands present, and CDC requires five, he is way positive.

The CDC criteria for a positive IgM WB are for two of the following bands to be present:
23-25, 39, 41 kDa

Your husbands test had the following CDC bands present:

23-25, 41 kDa
So he has two of the required bands present and meets the CDC criteria for a positive WB test.

What does positive mean? read up on the WB test, but my understanding is that the test has detected the presence of antibodies to the borellia b bacteria. This is generally considered proof of exposure to the bacteria, that it is in the body, and is the key to a diagnosis and beginning of treatment.

Make sure that you understand how to read the test results well enough that you can explain to someone. Try explaining it to the doctor or neurologist. I went to a good infectious disease doctor, and I had to explain it to him! Once he understood how to read it, it was the key to my treatment.

You must find a Lyme literate MD as soon as you can. Time is really of the essence. I can give you the name of my LLMD who is very good and in Nevada City CA. You could drive or fly to Sacramento and rent a car, Nevada City is about 1 hr north and west of Sacto. The sooner you get started on treatment the sooner he will get well. It took me six weeks to find one and schedule an appointment. Let me know if you want his name and number.

Read Dr. Burrascano's Treatment Guidelines , download from this site. If you have a physician friend that is sympathetic, you might consider having them prescribe one of the antibiotic regimens that Dr. B recommends. One has to be careful of self medicating if you are not an MD. But it made me feel better knowing that I was doing something good for my self while I waited for that first appointment. Again read Dr. B's treatment guidelines, knowing that he has a totally positive WB, and see if it something you want to pursue.

Another possibility would be to get the regular doc to 1) go over the test results with you 2) you ask some pointed questions and lead him to the conclusion that in fact the test is positive, and 3) he prescribes an antibiotic based on his textbooks. While this will be a lower dosage than Dr. B or other LLMD's would prescribe, it would be better than nothing!

Armed with your test results and an understanding of how to read it, I would not hesitate to go to another physician if you are at a dead end with your doc. He is behaving negligently! Your odds are high that another MD will correctly interpret the test (with your help).

About his walking problem: 1) be aware that many lyme sufferers are misdiagnosed with MS, and that the medication that is prescribed for MS is not good for one who has lyme, do not be lead down that path.

2) you are going to think I am out there, but, do an internet search for "lyme disease - bee venom" and read. Let that sit in the back of your mind while you are examing all of your options as they will come up over the next year or so. I know several people with lyme disease that have bad leg/walking problems. They tell me they hobble into a bee venom therapy session, and walk out easily an hour later, with the relief lasting for 3 days - then another session. Nature has strange ways.

Take good care of yourself and gear up for a long haul. Take some comfort in that at least you know what you are dealing with now, and the test results will lead to a diagnosis and treatment.


Posts: 20 | From Santa Barbara, CA | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
gopats
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The twitching was one of my first symptoms. This started for me back in 1997. It followed with cardiac symptoms. Later I had heaviness in my limbs. Suspected ALS, MS, structural brain problems, blah,blah, blah.

Let's put it this way. If I've been going through this for 7 years (just started treatment 1 year ago and I'm much better) and I had ALS, I know I wouldn't have improvement. I had days I couldn't walk.

Try and get your primary care to give you 1 month of antibiotics while you are trying to find a real LLMD. At least that would start you on something.


Posts: 298 | From Maine | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
bigbadbri
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Thanks again everyone. I really appreciate your advice and help. We are going to try the guiding technique while looking for an LLMD. Any names of good doctors would be appreciated! Please e-mail us if you would mind. I've made some calls but no appointment yet. I'd love to talk with the Dr. first before spending the money to go down there. As I said before, the last LLMD I spoke to on the phone said it was ALS. At least we know we will not be seeing him. We will read up on the Western Blot some more so we are well versed before we see another Dr.
Posts: 33 | From Portland Oregon USA | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
pab
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The Oregon Lyme Disease Network states that they will provide:

"Contact lists for patients to LLMD doctors"

Call or email them for the list. The phone number is 541-312-3081.

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Posts: 2775 | From MN | Registered: Apr 2001  |  IP: Logged | Report this post to a Moderator
   

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