Hello,
I am new here at this forum, I had a try a couple of days ago, but got kicked out because I had misunderstood some rules... Ok, I got a second chance; I'll try again, and this time I will do my best to behave correctly.

I live in Norway. I have a 17 year old son who has been ill for 2-3 years now, and present diagnosis is CFS/ME. During the last months we have got a strong suspicion that he is suffering from chronic Lyme. We have plenty of ticks in this area, and infected ticks are frequently found. Several people I know have got the EM-rash. But the docs here are not very good when it comes to chronic Lyme; they can hardly believe it is possible....

We are pretty confident that Lyme (and/or co-infections) is the real cause of the problems our son is having. Lots of the typical symptoms (I have read Burrascano). The reason for us to be so sure? Mainly videomicroscopy showing stuctures similar to spirochete stuctures, as described and shown in some publications and books. This microscopy work was done outside the Norwegian Health Care System, and docs will not take it as evidence, hardly as indicative. The boy has negative Elisa tests, but we do have two independent Western Blots, showing positive IgG for p41, p31 and p39. We are told that this indicates an old infection, long gone. -Only that the boy is still ill with all his symptoms.

In addition to this we have started to think that there may a Babesia infection in addition. This suspicion also based on one videofilm, showing what we think is intracellular activity. An US microbiologist said this looked like malaria, and all text books say that malaria and babesia look very similar.

Does anybody of you have any advise how to diagnos babesia. Where to learn more about microscopy methods etc.?? Where to find expertise and good labs? What are differences between common US and European strains?
It is hard enough to get the docs to discuss Chronic Lyme, -they will think I am mad if I try to mention co-infections. This is more or less a non-existing topic in Norway...

I really hope to find some useful information here at this forum.

Regards,
Gebe

Hi gebe, welcome to the board!

I am very sorry your son has been so sick.

No test for Lyme is completely reliable and results can vary by lab. It is my understanding that the ELISA is the least reliable test, and the one most doctors run first. It is frustrating that so many doctors are ignorant of tick-borne illnesses.

Did your son have both the IgM and the IgG Western Blot done? The IgM shows a more recent infection and the IgG shows a longer-standing one. Western Blot Bands description:

9 cross-reactive for Borrellia
12 specific for Bb
18 unknown
20 cross-reactive for Borrellia
21 unknown
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
28 unknown
30 unknown; probably an outer surface protein; common in European and
one California strain
31 outer surface protein A (OspA), specific for Bb
34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia
45 cross-reactive for all Borellia (sometimes people with Lyme who have
this band positive also have the co-infection Ehrlichiosis)
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients

Band 41 is often the first to show. Bands 31 and 39 are Lyme specific bands. One of the best labs for Lyme and co-infection testing in the states is IgeneX in Palo Alto, CA. I suggest contacting them for information on testing. Maybe you could have you son tested there?

Yes, Babesiosis is similar to malaria.

The best and only Lyme pediatrician in the states is Dr. Charles Ray Jones in New Haven, CT. Maybe he could consult with your son's doctor about testing and treatment?

I know of two Lyme doctors in England. I believe there is one in Germany also. If you would like their names, let me know. Maybe they could recommend a doctor in your area.

Do not give up. There has to be a way to help your son. He is so lucky to have you as his parent!

Thanks, Ticker, for quick reply!
And last thing first; I will NOT give up.

Nice to have the list of what is what of the borrelia bands, I haven't seen that before. We have not tried Igenex yet, I will check it out. So far we have tried European labs. Next thing now is spinal punction at a larger Norwegian hospital, even if I don't have too much expectations to that. We also have an other "project" going, searching for the Lyme bugs.

I know about the two MDs in England, and there is also a very skilled Hungarian MD, but I think he has just retired. I Norway the best we can hope for is to find a MD who is willing to act on advice from a foreign expert. Our doc will not!! Not before we have solid evidence. He thinks "foreign" lab results are ok, not everybody is going that far either....

But as I said, the really big problem is if you try to bring up co-infections. I did try to ask our MD about Babesia. He said he he had never heard of that bacteria before!!!! That's the level of knowledge!

I have been esarching for litterature, I see that there is a MD called Schaller i US who has published at least two books on diagnosis and treatment of Babesia. Is he known as a expert in the field? Anyone know if his books are ok?

Hi gebe. Babesiosis is caused by a protozoa and is similar to malaria. It needs to be treated with a combination anti-malarial (often Mepon) and antibiotic (Zithromax, Biaxin, or Ketek). I had a severe case of it, but I have finally eradicated it. I would be happy to answer your questions, if I can. I have not read this doctor's book on Babesiosis.

From what I understand, a spinal tap shows Lyme in less than 5% of cases. Is this test being done solely to test for Lyme?

Unfortunately, many doctors are ignorant about tick-borne illnesses.

It is important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses. He is one of the top Lyme doctors in the states, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.

Keep us posted on your progress okay?

The main purpose of the spinal tap is to look for Borrelia, but I guess they will do a general investigation of whatever they do in such samples. I said to our MD that I didn't, think they would find any more evidence of Borrelia in this sample than in the serum samples we already had, but he says it needs to be done, because it is part of the procedure he is supposed to follow..... So we had to. But I am afraid they will use a negative against us. They will be doing a serum WB analyses drawn at the same time as spinal tap. One of the docs in charge at the hospital said that if they found results in line with those we already have (two independent Western Blots with some positive Bb bands) they would consider treatment, even with no pos IgM.

But is there any scientific publication saying that spinal taps have so low sensitivity that they only find 5% ??? Or is that an impression from different data sources? I would really like to know. The only chance to discuss with hospital doctors is to have that kind of documentation, and even then most of them won't listen.

Hi Gebe,

I don't know whether you already know this or not, but the main Lyme Disease researcher in Norway is Professor Oystein Brorson who works at the hospital of Vestfold. Some people here in the UK are following his treatment regime.

I have also read that the hospital at Kristiansand in South Norway is doing some work on Lyme.

If you could perhaps get your son under either of these programmes at least he would be dealing with people who accepted the existence of his illness - a major step forward.

Good luck to you both.

Janet

Hi Janet,
Thanks for your comments.
Yes, I know about Oystein Brorson, our GP has even been in contact with him. He suggested the best treatment if treatment of our son was to be started, BUT: Our GP says that Brorson is not a Medical doctor, he does't have the authority to assess a diagnosis. Our GP will not start treatment unless a MD in a hospital confirms it is ok!!! And they will not do so based on what we have of evidence now.

It's a weird situation! The person with the best knowledge on this topic (here in Norway) says indirecty that treatment should be started, as I read it. Of cource Brorson is behaving very correctly, he doesn't say anything about diagnosis, only referring to the hospital MDs. This is a clinical diagnosis, and I think the GP should have the guts to do what he is in the position to do. But our GP won't take the hint, only because Brorson has the "wrong" education......!

Well. Yes, I am frustrated.
But we do have some "projects" going, in cooperation with other parents in the same situation. Interesting contacts with skilled professionals. We will see what that can lead to

Gebe