BLUT (that means blood)

Borrelien-AK
Borrelia-burgd. IgG-Ak (ELISA) 185
(after that they say < 100 = negative, 100 - 195 = borderline, > 200 = positive.)

Borrelia-burgd. IgM-Ak (ELISA) negativ

Borr.-Westernblot IgG P41, P39
Borr.-Westernblot IgM P41

Then there's a text in german that I don't really understand. I think it says I should do a western blot test. But I DID order a western blot test! So what's going on here?

Can anyone help me understand this? Did they make a mistake?

Love, Daphne

It looks to me that your ELISA results are a high ``borderline'' for the IgG, and negative for the IgM. Was there no number for the IgM?

I'm not sure, but perhaps this is reading that the IgG Western Blot picked up bands 41 and 39, and IgM band 41? Just a guess.

IgG and IgM reactions can vary depending on many things. It is commonly thought that IgG is an indication of a past infection, and IgM is an indication of a current infection. This is not always the case, especially with Lyme disease.

Many well informed LLMDs will treat based on any indication of infection, past or present. But what is most important to remember, is that LD is a CLINICAL diagnosis! Testing of any kind is not 100% accurate.

Here are a few links with more information on the WB:

WB information: http://flash.lymenet.org/ubb/Forum1/HTML/034966.html http://www.geocities.com/HotSprings/Oasis/6455/western-blot.txt http://flash.lymenet.org/ubb/Forum1/HTML/022767.html http://www.igenex.com/labtest.htm http://www.igenex.com/lymeopt2.htm http://flash.lymenet.org/ubb/Forum1/HTML/026659.html

My best,
Melanie

Now...I was only guessing as to the results, OK?

Different labs will interpret results in different ways. This is why we always recommend using labs that specialize in Tick Borne diseases for testing. That way, you KNOW what to expect!

These labs DO list all of the bands with all of the results for each band, and that makes life much easier!

I wish I could offer more information, but like you can see, there isn't much to go on here.

Have patience...you only need to wait a couple of more days to call. And then hopefully you will find more out.

Melanie

quote:

---

Originally posted by dafje:

Borr.-Westernblot IgG P41, P39
Borr.-Westernblot IgM P41

---

Band 41 is the most common borreliosis antibody
Band 39 is the most specific antibody for borreliosis of all

Western Blot explanation: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html

Looks like you have Lyme for sure! [I am not a dr!!]

The weird thing is, this lab specialises in borrelia testing. The dutch Lymenet advises us to go to this lab. It has 9 sorts of Lyme tests there - they included a form to order more Lyme tests.

I can't really find any indication of what this result would mean to a GP here. I know it's all a matter of opinion ( AND ignorance) about the western blot, and most likely seen as a negative as there are "only" 3 positives. Also I've read on one of the links that one of my two positives also turns positive when you have syphilis or some class of infection.

But what about the change (if it really IS a change) from IgM to IgG? What would that mean to you, just your non-professional opinion, after 6 years of having it the other way around? Cause to me it could just as well mean "YES LYME FOR CERTAIN" as "this proves you don't have Lyme anymorem / never had it at all". Or is there another reason for these different results in Germany and Holland?

Any thoughts on any of this are very welcome.

REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR

1. Recent infection before immune response
2. Antibodies are in immune complexes
3. Spirochete encapsulated by host tissue (i.e. lymphocytic cell walls)
4. Spirochetes are deep in host tissue
5. Only blebs in body fluid; no whole organisms needed for PCR
6. No spirochetes in body fluid on day of test
7. Genetic heterogeneity (300 strains in U.S.)
8. Antigenic variability
9. Surface antigens change with temperature
10.Utilization of host protease instead of microbial protease
11.Spirochete in dormancy phase
12.Recent antibiotic treatment
13.Recent anti-inflammatory treatment
14.Concomitant infection with babesia may cause immunosuppression
15.Other causes of immunosuppression
16.Lab with poor technical capability for Lyme disease
17.Lab tests not standardized for late stage disease
18.Lab tests labeled "for investigational use only"
19.CDC criteria is epidemiological, not a diagnostic criteria

The "they" I am referring to are the people at the german lab. I want to find out tomorrow what bands they tested and if I can get the original test results, not their translation into positives and negatives.

If they have no more info than what they gave me, I'm not sure what to do. Maybe try to find a german laboratory that sends you the results the way igenex does it, the results plus explanation/interpretation. I should've asked in advance of course but I don't speak german and I thought they would give me the results in their original form, because dutch lymenet said to go to this lab...

If I don't find a good lab in germany I really don't know what to do. I could get more tests done at this lab, maybe that could prove more, I don't know. I don't know what the test names mean. I mean I have that form here, and it says (for instance) that they had two types of western blot, serum and liquor. I don't know what the difference is, they gave me only one of them and I just assumed it was the only kind of western blot. Then they have some other types of test I've never heard about before.

I do now have the adress and info to go to a dr. in the UK but he's very expensive and of corse I'll have to wait a long time. I don't know if my dad will pay. He used to believe me about Lyme because I've read quite a lot about it, but now he has a girlfriend I can't really get along with (mostly because I think it's wrong cause she's married, but anyway) and she says it's some other auto-immune problem but not Lyme. She's no doctor at all (a librarian actually), she just uses Google on her computer and found 3 or 4 pages that say so. My dad suddenly doesn't care anymore about the thousands of pages that say I probably have Lyme. Maybe he doesn't want it to be Lyme. I don't know.

I just feel so lost

So do you think I should just try and get to a LLMD?

She will not refer me to any specialist or anyone in general. She says she doesn't think anything will make me better so it's a "useless pressure on the system" meaning it costs a lot and you won't get better anyway. I asked if I could be referred to a psychologist as I have some major issues accepting that, but she refuses. She actually uses my being a psychology student against me, saying I should be able to solve it myself. I don't think I can expect anything from her unless I break a bone or something.

If anyone knows anything about a dr. in the Netherlands, Germany, Belgium, Denmark, anything close, who would diagnose and treat lyme according to ILADS please tell me. I just got off the phone with my father and he says he is willing to pay for a trip to such a dr. but the one in the UK is too expensive. Maybe if I find one in a country that has the euro it would be a bit cheaper... Maybe go in August when they have youth travels for 30 euro's to most european countries... Who knows maybe I can work out a way to keep costs down. I've also heard people treat themselves with antibiotics they get from vets, is that true?

TAs far as I know, there is only one LLMD in Europe who is treating according to ILADS. She is in Switzerland and isn't taking anymore new patients as she is overloaded already.

There is an LLMD close to Hannover (not so far from NL) who is treating with IV Rocephin for some weeks. Which is better than nothing - I heard of lots of people who are happy with him. His waiting list is long, though:
http://www.dr-ledwoch.de/

And why don't you call the lab in Keulen and ask them for help? I heard Prof. Ackermann there is a nice person and certainly he'll speak English. If you tell him your problems with their test report maybe he can help you.

I'm not an expert for IV abx. I'm only on orals since Oct 04.

For more details about the doc in Hannover you could ask in the German Lyme Forum (your boyfriend could write for you in German). Many people there know this LLMD and can answer your questions.

In any case you should be on an anti-yeast diet with any abx you get.

I think there is a mistake. Why should they use a Westernblot with only 3 bands? Never heard of such a thing. Some people's tests come back with lots of bands from this lab.

Keep us informed.

No just kidding of course, but he's really friendly and wants my GP to call him 'cause he thinks I still have Lyme. He wants to try and convince my GP to give me antibiotics. I LOVE HIM!!!!

Oh and the assistent was obviously wrong about the western blot he said. He couldn't give me more information but based on my being treated with ABX before he says I should just be treated. I asked if he could refer me to a german dr. who would do this in case my GP wouldn't listen. He said I could call back and talk to him again if this happens and we'll figure something out, but I could hear in his voice he was surprised that I thought my GP wouldn't listen to him. confident, educated person agreeing with me, HA!

*goes to bake a cake to celebrate*

So glad that it worked so well with Prof. Ackermann - he certainly sounds like a good guy.

Yes, please, send me a big piece of virtual chocolate cake - if you don't mind.

In case it shouldn't work with your GP or with Prof. Ackermann finding a doc for you:

I have a friend who is treated by a doctor (also in Hannover, but a different one) for Lyme. This doctor had had Lyme himself and from what I hear is also very helpful. If all goes wrong I can find his address for you.

Good luck!!!

quote:

---

Originally posted by dafje:
Hannover is absolutely within reach, I just wonder about the IV. Would I have to stay in Hannover for that? Or do you guys just get IV's to take home?

I must sound very stupid for asking that but I really don't know what it's like to be treated with an IV. Do you get a lot of side effects and and do you have to do the anti-yeast diet with it?

---

I had medication and supplies delvered to me and a nurse come once a week to change the dressing on the picc line. I did the infusions and flushed the line by myself. Piece of cake! (While we're on that subject...got any left?)

I'm sure there are other ways to go about it as well. Like going to a clinic or hospital for treatment and/or dressing changes.

I found IV easy to tolerate as I had no stomache problems with them. I also felt like it was working faster.

For Lyme-related mail: dafjemeel @ hotmail.com

Dr. Ackermann wants me to have oral antibiotics for quite a while, he didn't say what kind and for how long but I don't worry at all about that. I will call my GP tomorrow and see if I can get her to call dr. Ackermann.

I'll keep you all posted and thanks everyone, for your support, information, and understanding.

Love,
Daphne

I had a blast last night, my friends came over to celebrate my having a deadly disease (as my best friend puts it), my jaws hurt from laughing all night long. I feel blessed.

I know how this feels. When I finally got my diagnosis I also had the feeling I should celebrate. Perverse, isn't it?

If you need the address of the other Lyme doc in Hannover, please email me. Will send you the link to his office, then.

All the best,

*sigh*

If Dr. Ackermann cannot find you a doc in Germany, take the one my friend is going to. I checked his website, one of his main focuses is Lyme. And I think his waiting list isn't that long.

I know how it is to have a GP who is absolutely ignorant. That's why I'm also travelling 100 kms - to keep my nerves in good shape. You will need yours also - don't waste them fighting with this woman.

Small chance, yes, but maybe some thorough nagging will help. If they don't agree on the phone, I'm coming over and I'm not leaving untill someone can explain to me how come I have to live with a disease that can kill just because dr.'s are apparently suffering from communication anxiety. It's all about their precious ego's while I waste another day on weed and attempts to do some household chores. I used to climb mountains, just for fun. It's just bloody unfair and I'm not leaving without either an antibiotics prescription or an explanation.

But, in case she has me removed from her office by security guards, I would like to know more about the dr. in Hannover. You mentioned a website, do you have a link? Or was the link to the german board the link I should use?

I haven't posted the link to this doc yet. Don't want to do this in public. If you mail me I'll send you the link.

Both docs in Hannover are NOT treating according to ILADS. No doc in Germany does. They'd be in BIG problems with the health insurances. But the one my friend is seing is prescribing her abx since more than one year already and isn't complaining yet.

The one whose link I posted is giving 3 weeks of Rocephin - don't know if you can expect much more from him. Anyway, the lymies in the German forum think he's the king. Well, among the blind ...

The other one (my friends doc) most of the times gives IV first, then follows up with orals. You could call him to find out more.