Thoughts on my symptoms....

Welcome! I would suggest reading the new to lyme thread in this forum.

Great! Others will be along to welcome you, with more knowledge, and they generally point folks to that link. I am not a Dr., but I would definitely look at the symptom list and see how it resonates with what you are experiencing. You'll know, trust that!

Welcome, Kristina.

I also suggest you find a LLMD and schedule an appt

28 days of antibiotics is recommended if you get a tick bite.

You have had several tick bites, along with symptoms.

Please come here for support..we understand how you feel.
I'm glad you found your way here...we will help you with this.

Thank you all for the advice! I am on the search for a LLD. I had my labs done at Stony Brook hoping it would be better then the regular labs but came neg. I appreciate the support and will keep fighting!

Thank you so much for your warm message and advice! I will definitely have to get some magnesium and I was just speaking to my friend about essential oils! I have already cut out dairy and gluten completely as they are inflamitory and I'm sensitive to them. Sugar is something I definitely will start watching. I'm on the search for a LLMD now, from what I'm finding its not easy at all. I will keep going.... I just want to feel better!!!

No. Your next step is an LLMD. do you have the results of your Lyme tests? If not get them. Most of us have all had negative Lyme tests; however if there are significant bands of your western blot, then you are more than likely to have Lyme.

More rheumys, neurologists and infectious disease drs are all going to deny the existence of Lyme as they are ignorant to the reliability of Lyme testing. This is going to waste your time and cause additional stress and aggravation. Believe me, we have all been there.

Hi LKristinia,

You don't need approval of your doctor to get an Igenex test. Igenex has their own doctors that can prescribe you the test. The Igenex test is a bit pricey. It will run you about 1k, but it's necessary. The lyme test your PCP gives you will definitely tell you you're negative. I've had 4 specialized lyme tests from my LLMD and they all say I definitely have lyme. If I take the test that the PCP give me, it comes back negative.

All of your symptoms sound exactly like lyme.

You have a right to ask your dr. To run Lyme western blot. If they won't, leave and go to another dr. This is the wording of a law passed in Connecticut about the inaccuracy of Lyme testing.
YOUR HEALTH CARE PROVIDER HAS ORDERED A LABORATORY TEST FOR THE PRESENCE OF LYME DISEASE FOR YOU. CURRENT LABORATORY TESTING FOR LYME DISEASE CAN BE PROBLEMATIC AND STANDARD LABORATORY TESTS OFTEN RESULT IN FALSE NEGATIVE AND FALSE POSITIVE RESULTS, AND IF DONE TOO EARLY, YOU MAY NOT HAVE PRODUCED ENOUGH ANTIBODIES TO BE CONSIDERED POSITIVE BECAUSE YOUR IMMUNE RESPONSE REQUIRES TIME TO DEVELOP ANTIBODIES. IF YOU ARE TESTED FOR LYME DISEASE, AND THE RESULTS ARE NEGATIVE, THIS DOES NOT NECESSARILY MEAN YOU DO NOT HAVE LYME DISEASE. IF YOU CONTINUE TO EXPERIENCE SYMPTOMS, YOU SHOULD CONTACT YOUR HEALTH CARE PROVIDER AND INQUIRE about THE APPROPRIATENESS OF RETESTING OR ADDITIONAL TREATMENT.”

Hi LlKristina!-

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 resource www.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.lymenet.org/BurrGuide200810.pdf

I copied all of this information from Traveler. She is a Moderator here.

You can also start a new thread and ask: Looking for LLMD in/around _________.
Fill in the blank with your closest city or state that you are willing to travel to.

I hope that some of this information helps you find a LLMD!

Best Wishes!

LIKristina, first off the Igenex test in California for lyme disease for the Western Blot IgG and IgM (tests 188 and 189) are only $210. You can order the test kit yourself directly from Igenex. However, you DO have to have a doctor or chiropractor sign off on the test. But any lab will generally do the draw. You want to do this early in the week to avoid your blood sitting in a warehouse on the weekend and not moving.

I have a list for NY, but I have no information about any of these docs and you will really need to do your research on all of them. Hopefully someone in NY will email you a doc that they are familiar with.

/sites.google.com/site/lymedoctors/new-york

I really think word of mouth is great for a doctor referral. You might want to look into a lyme support group in your area. You really can learn a lot from people that are going through treatment.

LOL!! Thank you so much, Little Bear!! You did wonderful! I was getting ready to post that information myself until I saw your post. Much gratitude!!

LIKristina, 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 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.lymenet.org/BurrGuide200810.pdf

The testing has NOT changed one bit!! That's one of my biggest complaints!! We know that these tests are NOT that sensitive as too many Lyme patients have the same story as I do - I had to provoke the positive test I had by being in treatment. For me, it took a full year of treatment before I could get a positive Western Blot.

Even the CDC recognizes this and says: "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/

Although, that's about all they get right!

There are many scientific articles stating that seronegative Lyme exists:
"We conclude that the presence of chronic Lyme disease cannot be excluded by the absence of antibodies against B. burgdorferi and that a specific T-cell blastogenic response to B. burgdorferi is evidence of infection in sero-negative patients with clinical indications of chronic Lyme disease."
www.nejm.org/doi/full/10.1056/NEJM198812013192203



" Apparent B burgdorferi seronegativity in serum immune complexes may thus be due to sequestration of antibody in immune complexes."
www.thelancet.com/journals/lancet/article/PII0140-6736(90)90606-6/abstract





www.anapsid.org/lyme/lymeseroneg.html