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!
 

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).]
 

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

Find a LLMD, keep us posted.
 

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

Gail
 

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?

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.
 

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.

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

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

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.

 

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.
 

"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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