Lyme Disease/Lyme

Advertisement


Question
I was told almost 5 months ago by my neurologist that my bulls eye rashes and symptoms were "definite" Lyme Disease. I had been camping for 10 days in the High Sierras a few weeks before symptoms started showing up.  He and my reg. dr. have had me do blood tests, yet they come back negative.  I am so discouraged.  Today, was one of those days that I hurt so much that I just did not want to go on.  I don't know what is wrong with me. I have researched Lyme and I have almost EVERY symptom.  Now I am being treated like it is all in my head.
I need help, guidance at the very least.  I have spent so much money and energy on this.  I run a non profit that helps struggling families, and I can no longer work.  The depression is becoming a serious issue for me.  Thank you in advance for any help you can give.

Answer
Dear Charisse, I'm so glad you wrote to me. I know firsthand how devastating an illness like Lyme Disease can be. There is still so much misinformation and controversy over tests and treatments that it is the patients who are suffering. Especially when many doctors run tests, see everything as "normal" and tell you "perhaps you should seek a therapist". I experienced that myself (despite a POSITIVE Lyme test) and know MANY other people who were referred to psychiatrists because their doctors could not find anything in the tests. In reality, it's because they are running INACCURATE tests or not running the RIGHT tests.

There is a link I like to share with many of my readers. It's written by Dr. Burrascano and provides guidelines used by many Lyme Literate MDs (LLMDs) It is: http://www.lymenet.org/BurrGuide200810.pdf
I would suggest going to page 9 and go thru the checklist to see how many symptoms you have experienced. There many be some that you didn't initially connect with having Lyme.

It can be EXTREMELY overwhelming because you have to basically become an expert on Lyme yourself, in order to seek out the right treatment, find the right doctors, etc. This is where Lyme support groups are essential. If you can tell me what area you live in, I can find out if there are any local support groups. If you are in Northern California, I know there are definitely some up there.

Re: the blood tests, I would highly recommend that you have a Western Blot Lyme test thru Igenex Labs in Palo Alto. If you are having financial difficulty, you can contact a group called LYMETAP (just Google them for their site) They provide financial assistance for people who need Lyme and other co-infection testing. You can call them, ask them to ship you the box of test materials which you will take to the lab that draws your blood. (it includes very specific instructions on how to draw the blood then ship it overnight) However, you will need a doctor to sign off on the paperwork, so if you can get your neurologist to do it, that would be great.

Also, there is a great book by author Katina Makris, called "Out of the Woods". I think it is one of the best books I've ever read because it is the firsthand account of a woman (who happened to be a homeopathic doctor in New England) and she went undiagnosed for 7 years before finally finding out she had Lyme. It is very inspirational and gives you hope that you CAN recover! :)

I wish you luck, and if you would like to write me back with the area you live in, I'm happy to see what resources you might have nearby. If you could mark your post PRIVATE, that would be helpful.

My very best,
Bonni  

Lyme Disease

All Answers


Answers by Expert:


Ask Experts

Volunteer


Bonni

Expertise

I contracted Lyme Disease while on hiking trip in Virginia almost 3 years ago. I returned to San Diego and within 3 weeks came down with a terrible "flu-like" illness. During that time, I developed some strange rashes on my fingers and the palm of my hand. I also had a giant melon size purple "bruise" on my left thigh which may or may not have been a bullseye - but I didn't even know that was back then. A week later, I went to the store and stopped right outside the entrance. I realized that I had completely forgotten WHY I was there and it was the most scary, unsettling feeling I've ever had. That was the beginning of my strange cognitive and neuro issues I would have for the next 2 and 1/2 years. I had previously been an extremely active person - running up to 4 miles a day and hiking a few times a week. All of a sudden, I was so tired I couldn't get out of bed and my legs became weaker and weaker. At first I thought I was anemic, and when I went to a clinic, they said you probably have mono even though you aren't testing positive. I began to get fevers, night sweats, sleep disturbances, abdominal pain, and horrible nausea. Within 6 months I was developing severe arthritis in every joint in my body and THEN...the worst. . . nerve pain developing in my arms and legs. It was horrific pain. It took 7 months and a dozen doctors to diagnose me with Lyme, and since then, my entire world has been turned upside down! I have had to learn everything I could about Lyme Disease since I live in San Diego and we only have FOUR Lyme Literate doctors in this city. I am a member of several Lyme support groups and have become very active in spreading awareness about Lyme Disease and helping people get the right treatment they need. I decided to join up as an Expert, since I saw there were currently no "Lyme experts" listed at this time. I can answer most questions about Lyme - most importantly, how to instruct people as to WHERE to get help, answers, resources, etc.

Experience

I have lived with Lyme Disease for almost 3 years now (in January of 2013) and have had to educate myself because of the appalling lack of (correct) information about this disease. There is so much misinformation about Lyme, that I took it upon myself to read every book, article and studies available and educate myself. I'm a member of several Lyme groups and have learned so much by listening to other patients about their experiences and treatments. Thankfully I now have a wonderful LLMD (Lyme Literate MD) and am finally getting the treatment that I need. I've worked with dozens of other Lyme patients in helping them get the proper information and providing them with the resources they need to find doctors, learn about their options for treatments and help them find local support groups in their area. It saddens me when well meaning doctors tell their patients that they should be CURED after 3 weeks of antibiotics and yet these same patients are still suffering years later because they still have large bacterial loads in their body that are causing symptoms like fatigue, brain fog, nausea, weight loss/gain, sinus issues, muscle weakness and sometimes lack of mobility, nerve pain, joint pain, etc. - the list goes on and on. We need doctors to come together and realize that the past guidelines are NOT effective and they need to take their patients seriously rather than suggest that maybe it's "all in their head" (which happens more often than you'd think!) I am now unable to walk without a cane or walker (depending on how bad my legs are!), I continue to have peripheral neuropathy in both arms and legs, brain fog and lack of focus/concentration (is maddening!), fatigue, joint pain, nausea, headaches, sinus issues. . .the list goes on. But I'm hopeful that I'm on the right track for treatment (Finally!) and am optimistic that SOMEDAY, I WILL be cured! :)

Organizations
Local and National Lyme Groups including CALDA (California Lyme Disease Association) Southern California Lyme Group MD Junction Lyme Group

Publications
I have a blog called http://sandiegolymer.blogspot.com/ which I definitely need to update since my last post, but it DOES have a LOT of useful links and information!

Education/Credentials
I have a Masters Degree in Film and Television - no medical degree here, but honestly I feel like I know more now than most (non-Lyme) doctors in the country.

©2016 About.com. All rights reserved.