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Lyme or Guillain Barré ?

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Posted 7/27/2014 3:30 PM (GMT 0)
Hi everyone,
I just registered on the forum. My name is Nicolas and I'm french, so i'll try to write in the most proper english possible.

My story :
I was in vacation in Aland Island, Finland and walking in the forrest. I did not feel any bite or anything. 3 weeks later, just after recovering from a mild surgery I had to undergo, I discover a 10cm-diameter, pretty red rash.
3 days later I'm going to my doctor and as she is not sure whether it's an EM (it never looked really typical) she puts me on Amoxyciline for 3 weeks, 3g/day.
Since then, no other symptom. I start the treatment, slightly the rash begins to turn back to skin color (very slightly i would say). I have seen in the mean time a dermatologist and 2 other doctors that told me that the rash was not typical but that it was good to be treated.

3 days ago came my biggest problem.
I gradually started to feel paresthesias mainly on my arms, then feet/legs. I also feel weird feelings in my neck/face, on a lower scale.

So now i'm wondering if I could have Guillain Baré Syndrome due to Lyme, or if Lyme itself would do that (even if i'm still til tomorrow on amox and do not feel any other symptom). Could it also be a Guillain Barré following the surgery I had one month ago ? All of this is confusing.
"Good news" is that my doctor was very careful and thought of Guillain Barré right away.
So I'm in a neurological unity in the hospital, waiting for more.
Symptoms have been stable since 2 days : no more, no less.

I any of you had similar experiences, It could be helpful.

Thanks a lot.

edit : my time scale :
potential bite mid-june 2014
potential EM July 4
Under treatment with amox : July 7->28 (ending tomorrow)
Start of weird nerves feelings : July 24

Post Edited (Nicolas) : 7/27/2014 10:28:59 AM (GMT-6)

Posted 7/27/2014 3:59 PM (GMT 0)
Hi Nicolas!
Welcome to our community!! Don't worry so much about using the most proper English - many of us here have trouble with 'proper English' due to these infections and how they can affect us!! LOL! What matters is that we can understand what you are talking about and you can understand us!! :-)

I'm so sorry that you are having these issues, but the parasthesias are actually quite common for Neurological Lyme disease.

If you haven't yet, I would highly encourage you to read through our "New to Lyme? Start here!" thread that sits at the top of the forum. It's got a lot of really important information, informative links and helpful pdf's listed in it!

You will need to find a LLMD (Lyme Literate Medical Doctor), though, as regular MD's have not been trained properly for treating these highly complex infections.

I'm not sure where you live, but you can give these places a try for finding a LLMD- just be sure to tell them what country you live in and the area of that country:
You can email Stephanie at: [email protected] You can also go to: www.turnthecorner.org/ if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS (International Lyme And Associated Diseases Society) trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. The ILADS site is another great place to read to get you started on your Lyme journey. www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

If by chance you live in France, near Strausbourg, I may have a lead of someone that may be willing to treat you. Please send me an email by clicking on my screen name on the left, or by clicking on the little blue envelope under my screen name.
Posted 7/27/2014 6:54 PM (GMT 0)
Bonsoir Nicolas!

Welcome to the forum! We are neighbours, I live in Belgium :-)

Don't worry about your English, there is absolutely nothing to worry about.

I can help you with an email address. There is a list of GP's in France that treat Lyme Disease, you can send an email to that email address, and they will provide you the requested information. There is dr P (Garches) too, but I don't know if he accepts new patients.

I don't know where you are located in France, but if you are close to Belgium, you could go and visit my dr.
Please email me (click on the blue envelope under my name, or on my name, then you can see my email address under my profile information).

Lyme disease mimics a lot of other diseases and conditions. It is often mistaken as other conditions.

While you are at the hospital, you could maybe watch a few documentaries about Lyme Disease, these are all in French:
'Lyme, la Grande Imitatrice':
http://www.dailymotion.com/video/xz3pml_lyme-la-grande-imitatrice_tech
'La Maladie de Lyme, quand les tiques attaquent':
http://www.dailymotion.com/video/x1vulej_la-maladie-de-lyme-20-mai-2014-france-5-quand-les-tiques-attaquent_lifestyle
'Under Our Skin', French subtitles:
https://www.youtube.com/watch?v=MQEEtXtrdQg

MarieLS
Posted 7/29/2014 7:34 AM (GMT 0)
Thank you so much for your kind messages.

I am now waiting the other exams at the hospitals. MRI is apparently fine, and my peripheral nervous system seems to work just fine according to exams.
How is that understandable....

I'm still surprised to have such weird symptoms 1,5 month after the bite. And I had amox....

If anyone experienced something like that I'd be glad he/she shares it with me :)

Have a great day all.
Posted 7/29/2014 12:46 PM (GMT 0)
There are only a few that have been on this site looking for answers for less than 1 1/2 months. These bacteria burrow into muscles, bones, joints and even organs to hide, so they can survive for a very long time, creating symptoms that come and go until the infections are finally treated properly. You can get a sense of what many here have gone through by reading what is known as the signature line - it's the part at the bottom of a person's posts that appear with every post - you can see how Marie has one, as do I.

It's very likely that all of your tests will come back as if you were just fine - even though you know that you are not. This is very typical of Lyme disease. Sometimes Lyme can lead to some very serious issues, and the chance of that happen generally goes up the longer one waits to treat these infections.

Lyme is a highly complex bacteria that creates a very highly complex infections if it's not caught within the first few days - or weeks for some people - before it gets deeply buried in the body. The medical professionals all over the world are not educated about this bacteria, and there are many rumors as to why, but just know that they aren't unless they have had special training.

It's always best to have some testing done to be sure that it's not something else, as the tests for Lyme are not reliable - they miss 40 - 60% of those that are actually infected. It's best to get a clinical diagnosis and hope that the tests back up the diagnosis, or that the start of treatment confirms the diagnosis.

Keep reading and learning about Lyme disease and the other tick-borne infections. The more you learn, the better treatment you will be able to get due to your own understanding.
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