Hi I'm new to this and looking for help

Hi everyone! I really don't know where to start this is my first time on a forum. I haven't been feeling well for the past two years. I have seen 4 different primary care physicians, an ent, a neurologist, a rheumatologist and I've been to the emergency room numerous times. I've had more blood work then I can count, MRI's, ct scans and the list goes on. Nobody can find anything wrong except my vitamin d was low and my Thyroid is enlarged but not worrisome? My symptoms are always the same but always different... I've had excruciating body pains and aches, a constant sore throat with horrible mouth pain (mostly tongue and palate), I often feel like I can't breath or cannot get enough air and I'm going to pass out, stomach issues, sudden stabbing pains in my thigh that make me want to scream, pains in my chest ( rib area I believe) numbness in fingers and toes, I feel like I cannot concentrate on someone when I am having a conversation with them, and the list goes on.... Everyone thinks I'm crazy! Before this started I very rarely went to a dr of any kind and I felt great. I have two beautiful children whom I was very active with and we live on a farm which I had no problem maintaining on top of my daily housework. Now everything is a struggle and I have to push myself like I've never had to before. I don't understand how they can tell me everything is fine when it clearly is not. I do remember seeing a western test on my blood work results that was negative but I honestly don't know what else it could be at this point. Do any of these symptoms ring a bell for anyone? There are more but I fell bad going on and on.... Thank you for your time : )

Post Edited (Sydney3601) : 4/6/2015 7:13:37 AM (GMT-6)

Sorry Sydney, your story sounds like a lot of ours on this forum, we've run from doc to doc telling us nothing is wrong, we are just depressed, here is a script for anti-depressants.

Start a new topic, "Looking for LLMD in the city/state" that you live and they will clinically diagnose you plus send blood work to the correct lab. The unfortunate thing is most don't take insurance. Or you can choose to self treat and do one of the herbal remedies such as Bruhners or Cowden protocol.

There is a lot of people on here with a lot of knowledge so feel free to ask questions and read other people's posts.

Hope you find relief soon.

Hi Sydney!!
Welcome to our community!! I'm so glad you found us!

If you haven't ​yet​, 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, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.​

Can you get a copy of that Western Blot test you saw? Although it may be considered "negative", if you can get a copy of the test that shows what bands were tested and the results of each band, we can help you understand what was found better.

Although, you should know that due to Lyme and Bartonella being able to suppress the immune system, the tests that are being used are not very reliable since they are only looking for antibodies - and the infections suppress the immune system from making antibodies.

But it surely does sound like you have enough symptoms to be looking for an ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area.

For information on finding a​n ILADS trained 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 and area that you would like to find a LLMD in and I will see how close I can get to your location.​

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

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. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your Lyme journey.​​www.ilads.org/lyme/ILADS_Guidelines.pdf​​

Welcome Sydney, lots of good people and lots of wonderful advice up here - has saved my sanity for a long time now! You'll be great, just get to an LLMD!

Hi Sydney - I think you should just find yourself a LLMD a.s.a.p. Don't worry about finding the labs for now...

As some others mentioned - you could get a Western Blot test through Igenex while waiting for your LLMD appointment. It costs apporx. $200. You could bring the results with you to your first appointment.


The multitude of symptoms is what led me to not believe my diagnosis of menopause and frozen shoulder...as they didn't explain the rest of my symptoms.

You have a multitude of symptoms, too...affecting many different body functions.

Thank you so much! How kind you all are! Very refreshing : )