Chronic lymes

Hi, I had a positive early lymes test 2 years ago and was very ill. Bedridden for months, neuropathy, night sweats, etc. I've been to a million drs with a bunch of diagnoses and I've been told by three infectious disease drs that it was a false positive. I believed them back then. I really need help. I feel so alone. I'm not myself and I have severe eye pain and dry eye and fatigue, etc. I live in south jersey in the woods. My two children had the bulls eye rash. We always have ticks on us. Can anyone suggest a lymes literate dr please? Thanks.

Hi Heidi!
Welcome to our little community! I'm so sorry to hear of your situation, but you've come to a great place to learn and get the support you need!

If you haven't already, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists (as Lyme rarely occurs by itself), helpful links and pdf's, how to detox when one has these infections, and a list of questions that you can ask any doctor that you are seeking treatment from!

We also have a pretty good search function on this forum to help you narrow down your search for information from past posts. We must be our own health advocates now and the best thing to arm yourself with is knowledge about our infections and the different ways to treat them!

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, you can start a new thread titled something like:"Looking for LLMD in the _______ area." Although 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 also email our long time member, Dan's Mother at:[email protected]

You can also 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

You aren't alone any more! We are here to help you learn what you need to know in order to get good treatment that will make you & your kids better!

Hi Robin, This is a great place. They have so much information here. I hope you read Traveler's post above. You'll find answers to so many questions.

And, if you enable your email address on your profile page, I will send info on the LLMD I am seeing. I've only started treatment 6 weeks ago after having symptoms for almost 7 years but I am happy with the results so far.

Heidi- I just want to say Hi and welcome to the forum! Stay positive and be patient. We are here to help you through the rough times.

Don

I was remiss in failing to welcome Joe to the forum as well. WELCOME Joe!!! I want to second what Traveler has said- Thanks for the kind words about the forum.

Don

springsjean said...
Hi guys, so sorry you are sick. There are many here from NJ. I am in central coastal jersey and my llmd is the same. Feel free to email me for info.

Hi there, it is nice to here you are getting well, I am very happy for you. I am stuck as to where to start since I cannot find a Doctor that believes me or even seems interested in helping me. I have been to sooo many different MD's, ugh! The LD that said I had Rocky Mountain spotted fever, gave me one week of Doxy, look at the other blood work and said I was fine because my PCR came back normal. However, she pulled a Lyme/Spylis Ab Diff profile Lyme IgG/IgM Ab and it was positive high 1.36 WB: IgG P30 Abnormal-present and IgM P23 Ab-present. I don't know but something seems very wrong with this picture. I asked my Primary Care Physician and he said they bllod test was in conclusive and irelevent to my symptoms which are more on the constant dizziness, balance and feeling faint with massive headaches at times. Any advice would be appreciated signed, LOST

Hi everyone. I live in Central Jersey by the coast and my mother lives in South Jersey. She is very sick with fibro, which we just recently found out was triggered by the Lymes. She was just diagnosed with Lymes. I am trying to do a lot of research for her. She is only 50 and has been out of work for 8 months.... She is very sick and we need guidance. Can anyone please recommend doctors and treatments? Are oral antibiotics better than the IV? You can email me... [email protected]


Thank you

HI Tiff!
Welcome to our little community! LOL! your Mom is my age! Tell her to hang in there, even the old people can heal from this!! LOL!

Can you get her to at least do some reading on this site? It would be best if she was the one posting, as we can interact directly with her that way and nothing gets "lost in translation".

I had to take your email address out of your post, as Admin (& me too!) doesn't want email addresses listed as this is an open forum - meaning that anyone with a computer can read these posts and we want to protect our member as much as we can.

If you wish to share your email address, please go into your profile, go to 'edit profile' and scroll down until you see "show my email address". Be sure to click on the one that says to show your email, then scroll down to the bottom and click 'submit' to save your preferences. That way only the members here will have access to your email address.

If you haven't already, it would be helpful for you & your Mom to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists (as Lyme rarely occurs by itself), helpful links and pdf's, how to detox when one has these infections, and a list of questions that you can ask any doctor that you are seeking treatment from!

We also have a pretty good search function on this forum to help you narrow down your search for information from past posts. We must be our own health advocates now and the best thing to arm yourself with is knowledge about our infections and the different ways to treat them!

You can tell your Mom that she's not alone in this and that we are here to help her get through this!