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silly sheep
Veteran Member
Joined : Oct 2014
Posts : 778
Posted 11/27/2014 3:50 AM (GMT -5)
I am a little confused (I have welcomed myself to the club ;) )and this is probably a DUMB question, but...
I live in Greece, so I am guessing I have a European strain (if I have it). I know that the strains are NOT geographically constrained, but if I understand it right I am more likely to have a 'european' type, right??
Trying to read all the names and info is making my head spin and I had to lie down for a while.
Soooooo, folks, I want to get my blood tested over at Igenex, and am in the process of trying to get this organised (lyme brain NOT helping!!).
But before I part with the money, is there any problem with me probably having 'european' lyme and getting my test done with Igenex in the states?
Would that be the same for Babesia, which I'm thinking of being tested for at the same time, since I seem to have many of the symptoms.
Or am I just twisting my own head up unnecessarily? HELP!!!!! ha, ha, ha!!
xfmlg
Regular Member
Joined : Sep 2014
Posts : 185
Posted 11/27/2014 4:54 AM (GMT -5)
Hi Silly Sheep:
I do not know which strain of Lyme I have and which strain my wife has. Wife and I both are products of Eastern Europe and came to North America as children, and wife and I figure we have had lyme given to us by our respective mothers. I am also sure that i have the local strain of lyme in me because i was bitten by a local tick about
8 years ago and i had that exact bull's eye rash.
As for doing the Igenex test, as I understand it, our local west coast canadian llmd works with some USA doctor who then submits the appropriate blood sample to Igenix in California, and the results go back to our doctor through this american doctor accross the border to us. It was explained to me that since Canada does not recognize Igenix results, they do not take samples provided to them by Canadian doctors. Its all so crazy and not right.
MarieLS
Veteran Member
Joined : Dec 2012
Posts : 2690
Posted 11/27/2014 5:37 AM (GMT -5)
Hi silly sheep
I'm in Western Europe, Belgium.
I'm emailing to a lab in Europe (Infectolab, Germany, where they do the Borrelia Elispot Ltt test) I will get back to you as soon as I get an answer.
MarieLS
silly sheep
Veteran Member
Joined : Oct 2014
Posts : 778
Posted 11/27/2014 6:53 AM (GMT -5)
MarieLS - Thank you :)
xfmlg - it's a crazy, mixed up, set up that's for certain. Over here it's much the same. There's Lyme in Turkey, the doctors tell me, but not here; I can see the Turkey from here. In fact I'm so close I could hit someone with a rock if I were a good shot. The boats go daily to and from there. But I have learned that ticks and tests DO NOT CROSS BORDERS you know. Pft.
I had the rash; I have the symptoms. I have been tested and told there's nothing else wrong with me (not MS, not CFS, not FM, not HIV etc, etc). Part of me thinks to hell with the tests. The other half wants me to get them an slap a doctor with them. Probably wrapped round a brick.
MarieLS
Veteran Member
Joined : Dec 2012
Posts : 2690
Posted 11/27/2014 8:00 AM (GMT -5)
I'm already back with news!
The lab in Augsburg, Germany tests for the following strains: Burgdorferi, Afzeli and Garinii.
This is the lab's info (I am in no way connected to this lab, the dr I'm seeing tested me through this lab, this is how I got to know it):
Infectolab, Morellstraße 33 in 86159 Augsburg
They always answer emails, if you have any questions: service@infectolab.de
You just need to order a test by email ( they will charge you for it if you don't use it, if I'm not mistaken). It has all instructions in it (how to order transport through dhl, etc). And of course a dr who's willing to draw you blood. It takes about
9 days to get the results.
I don't know the value of this Borrelia Elispot LTT test in Greece, but you can read all about
the test on their website.
MarieLS
silly sheep
Veteran Member
Joined : Oct 2014
Posts : 778
Posted 11/27/2014 8:40 AM (GMT -5)
Thank you sooo much MarieLS !!!
I have had a look over the website and am going to email them to get costs and find out what the exact procedure is.
I think this might be a less expensive way to start, and might put my mind at ease.
I'm not too fussed about
what the doctors think as they aren't going to treat me anyway, I don't think they'd be interested if God himself sent them a personal email with confirming lab reports, given they accused my mother of having Munchhausen's by proxy....
Thanks again :)
mauihawaii
Regular Member
Joined : Aug 2014
Posts : 349
Posted 11/28/2014 1:54 AM (GMT -5)
Thanks for this question, too, Silly Sheep, and for your quick work MarieLS!
I was bitten in Hawaii as a kid. In my young 20s I had two visible reddish purple bumps that are common to European Lyme and supposedly "have never been reported in North America"--according to all docs I can find online. But as soon as I posted a picture of them a few other folks on here said they have them too. (Called Borrealial lymphocytoma.)
I asked IGeneX if they would test for the different strains of Lyme since I believe I have a European version. They said No, they don't believe any lab in the US tests for the various strains. But their test picks up anything that begins with "Borrelia", as far as the few strains we know how to test for. So you seem best off going with the lab provided by MarieLS.
Summersun
Regular Member
Joined : Apr 2014
Posts : 451
Posted 11/28/2014 2:54 PM (GMT -5)
My understanding is that Igenix does not test for the European strains. I was tested for them by ImmunoSciences (also in California) because my doctor thought I might have got bitten in Germany many years ago.
Daxwell
Regular Member
Joined : Jul 2013
Posts : 89
Posted 11/28/2014 4:54 PM (GMT -5)
There was a time that mdl in nj tested for a few known European strains. I don't know if they still do. I know they only test cdc bands got US strain. Not sure what they do for European strains. Search mdl lyme nj and you should find the information.
Jimmyrider
New Member
Joined : Sep 2014
Posts : 14
Posted 11/30/2014 6:31 AM (GMT -5)
Hello silly sheep.
apo oti vlepw sou eipane hdh gia to ergasthrio sth germania.
Ypotithetai oti einai oti poio axiopisto uparxei kai antistoixo me to
Igenex.
den exw kanei tthn eksetash proswpika, akoma , thelw na epikoinwnhsw mazi tous na mathw thn diadikasia kai ta oikonomika..
Na steileis deigma gia eksetsh mexri Amerikh de nomizw na einai kalh idea prwton gia to logo pou anarwthtthikes parapanw kai mou fainetai oti to infectolab kanei ontws gia perissotera hdh kai deuteron exw thn entupwsh oti exei polu shmasia h eksetsh na ginetai oso poio suntoma apo tth lhpsh tou deigmatos..
Tha me endiefere polu ama to htheles na chatarame ligo.
MarieLS
Veteran Member
Joined : Dec 2012
Posts : 2690
Posted 11/30/2014 8:59 AM (GMT -5)
This last answer is on topic. I converted it to the Greek alphabet and tried to translate it into English, but it's only translating a few on topic words.
So far for my effort...
Jimmyrider
New Member
Joined : Sep 2014
Posts : 14
Posted 11/30/2014 9:34 AM (GMT -5)
MarieLS my post is writen in "Greeklish" ,Greek written with English alphabet.
MarieLS
Veteran Member
Joined : Dec 2012
Posts : 2690
Posted 11/30/2014 11:26 AM (GMT -5)
I figured that out... Lol
I needed to check if this post was on topic, since it was only your second post.
We like to make it readable for other members, since we have several European ones (and this is an English speaking forum). I'm European myself and get quite a lot of pm's from European members that are looking for information. Llmd's are rare in Europe, as is 'good' testing. All information is very much welcome.
This is a google translation, of course not perfect:
from that already told you about
seeing the laboratory in germany .
Supposedly that is what is reliable and relevant to
Igenex.
I have not done the test personally , yet, I want to communicate with them to learn the process and the economic ..
Send sample exetsi to America I do not think it is a good idea first for the reason " anarotitthikes " above and it seems to me that the infectolab actually do more already and secondly I feel that is very important exetsi be made as soon from what taking the sample ..
Would be very interested when you wanted to " chatarame " bit.
If Silly sheep enables the Emailaddress, you could contact eachother through private message?
MarieLS
Jimmyrider
New Member
Joined : Sep 2014
Posts : 14
Posted 11/30/2014 2:14 PM (GMT -5)
you got the most of it pretty much..!!
yeah you re right about
the English but you know ,you dodn t find everyday someone from Greece which i am from ,too.
I wanted to inform sillysheep that there is a lab in Germany,as allready others mentioned, that it is from what i was told the most acurate one ,something like the Igenex in the US.
I think sending to the US is not a good idea,cause the labs requier the blood sample to be there in 24h or maybe 48h max.
Plus there is the advantage that they test for more species.
Everything i write is only what others have told me as i personally have just started looking if lyme is what i might have as i haven t find any answers yet on my mystery illness after doctors and test marathons..
MarieLS
Veteran Member
Joined : Dec 2012
Posts : 2690
Posted 11/30/2014 2:22 PM (GMT -5)
I got tested at that lab in Germany. They are considered to be rather accurate.
And they are quick.
I hope you can both find a descent doctor in or close to Greece. I'm glad I've found mine here in Belgium.
Jimmyrider
New Member
Joined : Sep 2014
Posts : 14
Posted 11/30/2014 2:51 PM (GMT -5)
I hope too ,but i think it s gone be difficult.
Lyme isn not very "known" in Greece and if you haven t had the rash and symptoms right after it, then it doesn t exist!
I have found pretty much information from Greek medical sites witch describe it, even the late , but no doctor that could recognise it, others didn t even knew the word.
I have met 2 people in my country which had weird sumptoms, no hospital and doctor could help them and after searching on their own they got diagnosed with Lyme one in US and the other in Germany.
The one of them had very MS similar symptoms but MS test clean, however during these she was join an MS forum.After she found out what was going on with her she posted in that foroum and suggested to people in there to search if their MS could be lyme.. and quess what ,some that did where possitives to Lyme diagnosed as MS.
silly sheep
Veteran Member
Joined : Oct 2014
Posts : 778
Posted 12/1/2014 11:30 AM (GMT -5)
Jimmyrider, don't worry I am actually english but I have lived and worked in greece for 8 years, so I can read your greeklish but english is my first language :) Nice to hear there's someone else here from greece, too.
The doctors here on rhodes have told me I am a hypochondriac even though I had the rash, which is why I am going to test and treat myself. I am going to use the lab maria recommended, although I may have to go back to the UK to get a doctor to take blood. Only the vet here seems willing to get involved!!
Are you on the mainland or another island?
Jimmyrider
New Member
Joined : Sep 2014
Posts : 14
Posted 12/1/2014 12:11 PM (GMT -5)
Ok, i was wandering how your english can be so good.
Yes ,that lab i mean too.
You even had a rash? And what did the docs said about
that?
have you been only in rhodes to get checked or to a bigger hospital?
Have your tried with tthe regular tests?elisa ,WB? They run them in the hospitals.
There is no one that can take a sample of blood??? You can find a nurse or something to do.
As for what i wrote yesterday ,infectolab says blood must be there within 3 days so no worries for that. They even told me that they work with transport companies which come and pic up the sample,
at least from Athens. If that doesn t work ,i have found a way of sending blood tests out of country ,so just ask me.
Could you enable your email, so i could ask you some things?
MarieLS
Veteran Member
Joined : Dec 2012
Posts : 2690
Posted 12/1/2014 1:14 PM (GMT -5)
Infectolab has a client number at DHL. DHL knows how it works. You need to order the transport before you get the blood drawn ( mentionning the infectolab client number), so that they can come and pick it up asap.
You don't need a dr to prescribe you the test, if that helps.
The client number is mentionned on the paper that goes with the test kit.
xfmlg
Regular Member
Joined : Sep 2014
Posts : 185
Posted 12/2/2014 2:06 AM (GMT -5)
This thread is very interesting for me. I was just diagnosed with lyme this past February using igenix. I figure i've had lyme all my life and that it was passed on to me by my mom and maybe she got it from grandma over a century ago. I was born in Austria and my family origin is Ukrainian (western area). Wife's background is very similar and i figure we both have that european strain of it. I was also bitten 10 years ago by a tick here locally about
100 km east of Vancouver, Canada, and i had that typical bull's eye rash which was ridiculed out by my then medical clinic doctor. My question is if there are any differences in the protocols used by llmd's and llnp's in central or eastern Europe. Wife and i are just on the start of this lyme trip and it is just so overwhelming. Today, i was at my llnp for a session and i showed him the burn like whelts on my face and chin, and he told me that he thinks it probably is a manifestation of that fungal infection that he suspects is inside me. My face and scalp look awful and i am hoping that the antifungal supplement will work some on me. Any ideas, anyone?
xfmlg
Regular Member
Joined : Sep 2014
Posts : 185
Posted 12/2/2014 2:12 AM (GMT -5)
Just to add to this story, wife and i feel that we have passed on our lyme to our 2 now adult kids and that due to the psychological effects of their lyme and our lyme, we all have become damaged and that damage done to each one of us has resulted in both our adult kids being totally estranged from us for many many years. We are trying to figure how to find them now and to somehow get messages to them to go get tested for lyme, but i know the way my son is now, any communication will be rejected categorically and he will not heed my input into his life now. This sad existence is devastating for both wife and me. But we still have each other now. xfmlg
silly sheep
Veteran Member
Joined : Oct 2014
Posts : 778
Posted 12/2/2014 6:15 AM (GMT -5)
Jimmyrider, I have enabled my email, so feel free to message me. It would be easier for me in English (if that's OK with you) as my main Lyme symptoms are in my brain and I am finding Greek really REALLY difficult!! (and your English is great! Way better than my Greek!!!)
I have been to the main hospital on rhodes after I collapsed at work I was taken to the emergency room. They couldn't find anything wrong and sent me home. I went to the private hospital when a small scratch on my hand turned septic even after the antibiotics I was given. They told me I was lying about
my symptoms, told me there's no Lyme here, so I can't have it, and sent me home.
We have DHL here and my husband has just gone to talk to the Doctor at the private clinic so we can hopefully get everything arranged.
I was told my rash was ringworm and given hydrocortisone, which made it worse. That was over 18 months ago.
They said the initial physical symptoms (severe fatigue, severe shooting pains etc) were coincidental.
My main problem with the blood tests id that I have a huge phobia - I had to be sedated and restrained for the one and only blood test I have had. The hospital only ran routine blood tests, which were all normal. I asked them to do a Lyme test, but they said it wasn't possible for me to have it, so did an ANA test instead. It came back negative.
I look forward to your email :)
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