My Lyme results. Do i have lyme or neurolyme? What can i do from now on?

Welcome Nick!

Sorry for the reason you're here but, glad you found us!

Your symptoms sure sound like Lyme (and possibly one or more of its coinfections) and your testing confirms it.

Here is some information that may help you:

An IgM result means that you have an active infection. It once was thought to mean an 'early' infection, but has since been revised. IgG means that the infection is at a later stage.

The more +'s you have beside a number, the stronger the reaction.

IND means indeterminate - not negative, but not quite strong enough to be "fully positive". But it means that you reacted on those bands and should be considered, especially when they are Lyme specific bands.

A "Lyme specific band" means specific for Borrelia Burgdorferi, sensu stricto - Lyme disease in the strictest sense. There are only two on the over 300 known strains of Lyme that is considered Bb, ss. Borrelia burgdorferi and Borrelia mayonii. Nothing else will turn a Lyme specific band positive other than Lyme disease - - even though there are over 100 different strains of Borrelia in the US that cause human illness.

Bands 18 & 41 (whether in IgM or IgG) are indicative of the tail of the bacteria, which can cross react with other Spirochetal bacteria such as Relapsing Fever, Pintas and Yaws, and Syphilis.

Band 31 has suddenly started to be controversial, but I really don't understand why. Any time someone says that it's not Lyme specific, they report that someone else told them this. There are quite a few PubMed articles that support it being a Lyme specific band though:

www.ncbi.nlm.nih.gov/pubmed/1520966

www.ncbi.nlm.nih.gov/pubmed/9440203

www.ncbi.nlm.nih.gov/pubmed/8406878

www.ncbi.nlm.nih.gov/pubmed/8005219

www.ncbi.nlm.nih.gov/pubmed/10030131


And more references can be found here:

www.reocities.com/HotSprings/Oasis/6455/western-blot.txt

I prefer to use the above site, although it's a bit confusing at first, because it lists corresponding PubMed articles, so I don't have to look it all up myself - bonus! LOL!

According to that site, the following bands are Lyme specific and if anyone has even one of these bands show up, they have been exposed to the Lyme bacteria and if they have symptoms, they need to be treated, or they will only continue to get worse:
22, 25, 28, 31, 34, 37, 39, 83 & 93

The research is continuing, and things can always change, but at this point this is the most accurate information I can find.

Please be comforted in knowing that you can heal with oral antibiotics. IV antibiotics should only be used by those who have severe GI issues.

Exercise in moderation is advised for anyone capable - listen to your body.

You will need a higher dose of doxycycline and most likely other abx as well. These infections are complicated and require more complicated treatment.

To find a LLMD, I suggest you start a new thread titled "Looking for LLMD in Greece" and be sure to enable your email so members can contact you directly.

Since LLMD's are often persecuted by insurance companies and medical boards, we need to protect those that heal us. Thus, we do not allow posting of their contact info.

To enable your email:
Click on My Profile
Click on Edit Profile
Enter your email address in the appropriate space
Click on show my email
Click Submit

In the meantime, I suggest you read through our "New to Lyme? Start Here!" thread that sits at the top of the forum. It is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more. And this is another good list of possible detoxing routines: www.tiredoflyme.com/detox-methods.html


For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.

​You can send Traveler an email by clicking on her screen name or the small blue envelope under her screen name. She may have contact information for some LLMD's in your area as well.​ ​Please include your state (or province) and area that you would like to find a LLMD in and she will be happy to share the names that she has.

You can email the Tick-Borne Disease Alliance at [email protected]​ for LLMD referrals and you can go to ​tbdalliance.org​​ to learn more about these infections.

You can 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​​

ILADS has their own referral system as well:
ilads.org/ilads_media/physician-referral/


​ You will want to find an ILADS trained doctor, not one that has self proclaimed themselves as a LLMD or an ID Doc (Infectious Disease Doctor), as ID docs believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey:
www.ilads.org/lyme/treatment-guideline.php


I know all of this is overwhelming and I've given you a LOT of information to consider. Take your time to go through it all and know we are here to answer any questions you may have.

We will gladly help you throughout your journey. After all, we're all in this together.

Good luck!!

But i can't understand how Greek laboratory show a positive result in the same band (Osp C) that German arminlabs, don't.

Thanks for all your info cd3764. I have search a ton of them too, i just searched yours too.

So do you think PeteZa that i have lyme, too?

My doctor here in Greece want to put me on IV for 2 weeks, but i am a little bit afraid of them.

Thanks so much PeteZa and CD. Do you know if i can test for co-infection like ehrlichia and babesiosis even now that i am already on doxy for 2 weeks. Will the tests be reliable for me?

Now i start doxy from my own until having more results from lyme tests.

Do you think that 2 x 100mg doxy every day, is not an efficient dose?

I am so impressed that the doctors there got you in the right direction -the proper test and all. Some doctors here in the US are "so smart" they miss what is right in front of them. Good for you. I lived in that part of the world and "how would you get Lyme there?" is the assumption.

Well, "Bacteria don't care where they live" That's what one kind doctor who finally diagnosed me said after a 5 year struggle.

You have been given great advice. I hope you heal well!!

NickK

I've emailed one of our members who lives in Greece in the hopes that she can come here and give you advice.

IV meds should really be a choice of last resort. People usually get PICC lines put in and administer the IC themselves. This is not without risks. I suggest you visit You Tube to see what's involved:

/www.youtube.com/results?search_query=picc+line+lyme

I would go to the Paracelsus klinic outside st gallon.
they treat lyme
make sure they look at lower wisdom tooth space well-fits your symptoms

No problem, NickK :)

The herbal protocol I am taking is called Buhner's protocol. He is the man who did the research and put it together. It is a very popular protocol, many people here take it, although there are others to chose from too, it is necessary for you to find out which one works for you.

Buhner's main herbs for treating Lyme include Cat's Claw (there are two types, Uncaria tormentossa and uncaria rhynchophylla and I take both as u. ryhchophylla is specifically for neuro lyme), resveratrol, ashwagandha, andrographis and elutherococcus. There are other herbs that you can add to this protocol depending on your symptoms. If you would like to know exactly what all the herbs are for and the doses etc, then I would strongly advise you to get a copy of Buhner's book so that you can understand it all. It is called Healing Lyme and the most recent version was published this year, there is an older version but it does not contain the newer protocol. I ordered mine from Amazon. It is in English, but I am certain that you will have no problem being able to read it. Also there are many people here, including me, who will be happy to answer any questions you have about it. I can also tell you which companies will ship the herbs that you need to Greece if you need that information too :)

The rife treatment was something that I started at the clinic where I was diagnosed in the UK. It is a type of Electromagnetic treatment. An electromagnetic frequency passes through your body at specific frequencies. These frequencies kill the bacteria. I found it worked for me, so I bought my own machine to use here in Greece. I would recommend that you try one before you buy one yourself as they don't work for everyone. It is a shame you are not on Rhodes as you could try mine! I bought a relatively inexpensive machine although there are more powerful (and more expensive) machines available. I got mine from a company on the internet, you cannot buy them in the shops.

Yes, vibromycin is the name of doxycycline here in Greece. They are the same thing and that is what I took. Be certain to only take it with or after food and drink plenty of water when you take it. The tablet is not coated (like a capsule) so if it gets stuck in your throat it will make your throat hurt!!

I also took some other antibiotics, for example I pulse Flagyl (metronidazole) three days a week, I also took plaquenil and erythromycin - I bought all of these from the pharmacy. I am NOT telling you to go and buy these and take them, I did so on the advice of my doctor! But these are examples of antibiotics that you can buy here that are used to treat Lyme and coinfections (I also have Bartonella).

Also, if you are taking antibiotics be sure to get some good quality probiotics from the pharmacy too. The pharmacist will be able to tell you which ones are the best. I ususally get something like ultra levure as the pharmacy almost always has these available. You should take these at least 3 hours before or after your antibiotics. Do NOT take them at the same time!!

Also I have emailed my friend in Athens and given him your email, I hope that he gets in touch with you soon. I know that he knows that there aren't many of us in Greece who know that they have Lyme and he had a big problem with the doctors here too. I also know that he takes a different protocol - some of Buhners herbs, plus some others, so he will hopefully have some good information for you too.

Have you looked into Olive Leaf Extract? Well, we are in Greece, lol!!!

If you have any other questions I will be happy to help you if I can :)

I don't understand, as much as i searched it on internet i am confused more.

The band 41 is not specified for lyme, the band 25 can be cross reacted with chlamydia pneumonia wich i have elevated igg:256 and seems to be a past infection, and band 31 can be cross reacted with coxsackievirus that i have elevated b5 and seems to be a past reaction.

On the other hand IGeneX says that for band 31 you must do another test to be sure that is reacted from Lyme BUT if you have band 25 and band 41 actived too, then this can confirm the lyme disease.

I don't know, i start thinking to go to the St. George Clinic in Germany, if my insurance company will cover the cost. Do anyone knows if they will run all the tests for lyme and co-infections there before they treat me?

I read somewhere that they have a large delay because they are full and they accept people from all over the world, is this true?

Do anyone of you went there and his/her insurance company cover the cost?

You need to be careful where you get your information from, there are a lot of people spreading (mostly not intentionally) misinformation about Lyme. This is the site that I use to help interpret the bands and what they mean:www.oocities.org/hotsprings/oasis/6455/western-blot.txt You can go there to find supporting Pubmed articles showing what these bands represent.

An IgM result means that you have an active infection. It once was thought to mean an 'early' infection, but has since been revised. IgG means that the infection is at a later stage.

The more +'s you have beside a number, the stronger the reaction.

IND means indeterminate - not negative, but not quite strong enough to be "fully positive". But it means that you reacted on those bands and should be considered, especially when they are Lyme specific bands.

A "Lyme specific band" means specific for Borrelia Burgdorferi, sensu stricto - Lyme disease in the strictest sense. There are only two on the over 300 known strains of Lyme that is considered Bb, ss. Borrelia burgdorferi and Borrelia mayonii. Nothing else will turn a Lyme specific band positive other than Lyme disease - - even though there are over 100 different strains of Borrelia in the US that cause human illness.


Bands 18 & 41 (whether in IgM or IgG) are indicative of the tail of the bacteria, which can cross react with other Spirochetal bacteria such as Relapsing Fever, Pintas and Yaws, and Syphilis.

I'm not sure why so many have suddenly started questioning the validity of Band 31 as a Lyme specific band when there are so many PubMed articles that show that it is. Not one person has been able to say more than their doc is saying this or Igenex is - but no one can point to any evidence that may have changed. The last article actually has the most compelling evidence to this citizen scientist. :

Band 31:
www.ncbi.nlm.nih.gov/pubmed/1520966


www.ncbi.nlm.nih.gov/pubmed/9440203


www.ncbi.nlm.nih.gov/pubmed/8406878


www.ncbi.nlm.nih.gov/pubmed/8005219


www.ncbi.nlm.nih.gov/pubmed/10030131


I agree that you should call the clinic and ask your other questions.

silly sheep your friend sent me an e-mail yesterday. i sent you my mobile number if you want to talk too, in a private message.

I am on rocephin, fourth day today. I haven't seen any improvement yet, but i think it's to early..

My results from Arminlab come yesterday too

borrelia b. vollantigen + 5
borrelia b. OspA + 4
Borrelia b. LFA-1 2 SI

All values above 2 is credit as positive.

How are you going?

I call the German clinics too, they want 15.000 euro for the 2 weeks course, but i don't have too much money at this time.

And i am not sure if my insurance will going to cover it, as these are not traditional therapies and maybe they won't (i am about sure that they won't).