New Here - doing my research

My boss suggested I get tested for Lyme disease - been really sick - and when I looked up symptoms - I was really shocked. I met a friend by chance on the street, and when she asked how I was and I told her, she asked where I had been. Duh! I had two artist residencies in CT, and also spent time in northern Slovenia, and now I've learned that Slovenia has more cases of lyme than any other European country. I also asked my dr. for a full thyroid panel, because some of those symptoms match. Its the headache that really knocked me flat, and the extreme fatigue, and the weird aches and pains, nausea, balance issues, aphasia, trouble swallowing, chest pain, slurring speech sometimes, really irritable, pain behind my eyes, ear aches, jaw and teeth pain, one part of my face is saggier and my skin has aged incredibly since 2012, thinking one word and writing another. thinking one word and saying another. My doc told me my blood tests all came back fine and sort of wanted to leave it at that and I really had to advocate hard. He was really angry when I told him the Elisa test wasn't sufficient and gave him a printout of the American Lyme Associations info on it and he has ordered a Western Blot. Given my conditions, my guess is, if I have had it, I either contracted it in Slovenia in 2012, or CT in 2013. The feeling crappy actually began I think in 2012. He ignored my first request for a lyme test until him I learned that the small town I was in in Ct reported 20 cases of Lyme.

Anyways - also following my intuition.

By chance, for some of the symptoms, a friend suggested colloidal silver, and I have been using that along with some other things - basically eating a really clean diet and eating really well - the nausea was so bad for a bit I had to force myself to eat and I lost some weight. I began to feel a little turn towards life rather than if my entire body was shutting down. I also added fish oil, coQ10, some migraine supplements, other things. Now that I've researched a bit, I understand why the colloidal silver and fish oil might be helping if I DO have lyme.

Anyways - my doctor ordered a bunch of other blood work and I am going in for a brain Mri and MRA and I also convinced him to order a full thyroid panel.

This is 4 1/2 months of a headache ever day that doesn't respond to pain med. I had another headache like this in 2013 and that lasted 3 1/2 months.

They didn't find anything wrong in the MRI and I think they just wrote me up as crazy.

let the journey begin...

I had a headache that did not respond to narcotics. It was horrible so I can relate to what you are going through.

chronic unrelenting headache pain is the worst, it's been the worst symptom for me (back of head pain).

You are doing the right thing, you have to advocate for your health when it comes to this stuff. Getting the wb is a good idea, but if you can try and see an llmd/llnd. Your current dr sounds skeptical about dx'ing this disease, and even if they weren't, the llmd's will be better able to direct treatments. I'm not saying you have these diseases, but for a thorough knowledgeable workup the llmds are usually the best.

I've heard good things about colloidal silver. Also a lot of good herbal products out there as well. Can always sample different herbs, if you herx, it can be helpful in indicating that there is an infection. Just a thought.

Good luck!!!!

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

I too think you are doing the right thing by making sure it's not Lyme that you are dealing with. Remember that the Western Blot isn't very accurate either though - we are supposed to be diagnosed clinically. "Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks. Laboratory testing is helpful if used correctly and performed with validated methods. " www.cdc.gov/lyme/ <--- that's about all the CDC has right about Lyme, but they did get that right!!


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. And this is another good list of possible detoxing routines: www.tiredoflyme.com/detox-methods.html

You would undoubtedly have an easier time if you were seeing a doctor that understands these infections much better than your GP or an ID doc or most any other, as they simply are not trained properly. I would encourage you to find a LLMD - a Lyme Literate Medical Doctor that is trained by ILADS ​(International Lyme and Associated Diseases Society)​.

To find a 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/


​ 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

Chills? Wow, I hope it's the good kind!!!

That is correct. The ELISA misses about 70% of those that actually have the infection, the Western Blot misses about 50% of those that have the infection. PCR isn't a good option either, as a large number of pieces of the bacteria must be captured in the sample, which isn't as easy to do as one would think. The bacteria is only in the blood stream about once every 4 weeks or so to replicate, then it 'retreats' back into the safety of the tissues, organs and other places in the body.

Please do let us know how we can be of help to you!!

Unfortunately, in order to get the best care, I'm afraid you are likely correct in thinking that you will need to find a new doctor. Many doctors seem to get stuck on one diagnosis and can't move past it for their patients. I'm sorry about that. Finding a new doctor is not on my list of fun things to do!

While journaling can be a pain, it is often incredibly helpful in understanding how your body is reacting/responding to a new med or watching for signs of other infections, and understanding when you are in a herx. There are many styles and a handful of apps that you can download to help you get through this. Just do an online search for Lyme apps and I bet you will come up with a lot of them!

Do let us know how things turn out with your MRI and MRA!

My western came back negative . Ask to see all bands..or get igenix..my mri showed multiple t1 t2 punctuate flairs..associated with early ms or small vessel vasculitis. ..nuero said it was normal .22 docs later ...watch under our skin on hulu...it is wealth of insight..dont give up .dont take idk for answer...you can start with herbals..get it early do not waste time. Best of luck.

Western Blot came back negative - if I do have lyme, this will be an upward battle with the GP I have. Time to start looking for a lyme literate Dr. Rough night last night.

Thank you wondering!