sorry if i did something wrong....please help

robby1260 - I'm sorry - I don't know what happened,but glad that you managed to start a new account and reposted.
Welcome to our community...

I do have the burning nerve pain...it's awful, I know.

My tongue tingles, but not burns.

The symptoms are varied from person to person...we're all pretty much unique in what symptoms we get.

Do you have the test results with you...you could post the results...sometimes even though they are overall a negative...there can be indications that point to Lyme disease. If you're willing to share them, we could look at them.

Have you thought about finding a LLMD near you...and scheduling an appointment for an evaluation?
That is the next Dr. you should see.

Since you are new here, it would be helpful for you to take a look at the thread at the top of the page titled:"New to Lyme?..Start here!"
It's full of good information packed in that thread.

Hi Robby,
It's quite possible that someone did it accidentally - unfortunately it happens from time to time. I don't see anything in your post that violates the rules (please read them if you haven't yet), and we usually give a person a chance to explain or correct their post before we resort to banning - unless someone is only here to sell something.

And Admin is incredibly busy trying to keep up with all the forums on this site, plus his work work and a family - so he may still answer you later on.

Your tests so Equivocal - not negative. Those results combined with your symptoms show that you likely do have Lyme disease and possibly other infections.

There is lots of Lyme cases in Florida and in every state in the US. Lyme is now passed by many more insects than just ticks.

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 me an email by clicking on my screen name or the small blue envelope under my screen name. I 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 I will be happy to share the names I have.​


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/

And a new resourcewww.LymeDoc.org


​ You will want to find a well 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

robby1260 said...
thank you for the help. My tongue tingles too. My 2 testes results show this.

Lyme Ab/Western Blot Reflex
Lyme IgG/IgM Ab <0.91 ISR 0.00 - 0.90 02
Negative <0.91
Equivocal 0.91 - 1.09
Positive >1.09
Lyme Disease Ab, Quant, IgM <0.80 index 0.00 - 0.79 02
Negative <0.80
Equivocal 0.80 - 1.19
Positive >1.19
IgM levels may peak at 3-6 weeks post infection, then


I just ordered the Igenex test from California. I'm a little confused which tests I have to draw blood for. I live in South West Florida what makes me think it's hard to have lyme in here but I was bitten by 15 ticks and i was 19 in Brazil but lyme is rare there.

it looks like the Western Blot wasn't done - most likely it was a two - tiered test - where the first one (either an Elisa or IFA) has to be positive before they run the Western Blot.

So, for the Igenex test - I just did the Western Blot (I never bothered paying extra for the Elisa or IFA) - it will cost $210 for the Lyme WB IgM and IgG. Those are the two tests you should get.
They are the 'best bang for your buck'.

Thank you so much!

Thank you for the info. I ordered the Igenex yesterday!!! I never thought that i was going to say it 6 months ago but I hope i have lyme. My life has been so said and depressing with all my negative tests and pain, burning in the daily base that I will be glad to have it and be able to treat it as soon as possible.


PCR for Diagnosis of Lyme Disease: Is It Useful?

Post Edited (robby1260) : 5/6/2016 10:03:49 AM (GMT-6)

Sorry for asking so many questions. Did you guys have negative tests before the positive one. How normal is that? Is normal to go down fast with symptoms? I have being going down so rapidly In 5 months with the accumulation of mt symptoms. My hands are so shaky now that i have a hard time texting.

Post Edited (roberval vieira jr) : 5/6/2016 11:08:08 AM (GMT-6)

Got it. Thank you!

Noooooooo!!! You shouldn't have to pay $5000 up front to start treatment! yikes. run from that one.

I am in BC, Canada, so we treat with LLND's - they can prescribe antibiotics here in BC.

My initial consult was something like $250 plus some supplements - I think the total was $400.

Now my half hour follow-ups are $80. extra for supplements. And of course I buy the antibiotics separately.

But, I believe the LLMD's cost between 250-500 for an initial consult...but then there is the supplements and antibiotics you will need.

When you find one in your area...you can call and ask what you should expect to be paying for the initial consult..they shouldn't mind telling you that.

Hopefully more members from the U.S. will post what is the usual cost.

I had several negative, as in not one single positive band, and then after a year of abx, I finally tested fully CDC positive for Lyme and RMSF. I had many more infections than that, but that was all I needed.

It's really quite common to test negative, as Lyme inhibits (lowers for those with brain fog) the immune function, and these tests are relying on a well functioning immune system to produce antibodies, which is what these tests actually look for instead of the bacteria itself.

How fast someone goes down with symptoms depends on many factors, like the strength of the immune system, if there are co-infections, if there are other conditions that the person is dealing with and more. So there is a lot of variance in that. I managed to carry on for almost 37 years before my symptoms took over completely, but I couldn't work for a long time by then.

I saw an alternative medicine doctor, in a little bitty town and she was mostly retired, so I got off really cheap for my appts. - $45 per visit. You can't count that though, as I said, it was an unusual situation - and she had never knowingly treated a Lyme patient before that.

Keep asking those questions!! Lyme has an incredibly steep learning curve!!

That is why we are here. At one time I was asking the questions just like you.

Happy to help and wishing for good healing to all.

I will for sure keep everyone posted.... waiting to get my kit and going to get tested. Do you guys felt any improvement in the beginning of your treatment. If it's my problem i can't wait to start the antibiotics and have some improvement. Right now while I am typing this I'm shaking a lot, my calves are hurting and weak, and my face in burning but not too much, and feeling a little weird.

There are things you can do though! Since you likely do have Lyme, you can start by making sure you are eating as few highly processed foods as you can, and to start detoxing. That will put you ahead of the curve for when you get a doctor and start treatments, which is when you would have to do these things anyway in order to heal.