You are here:

Lyme Disease/Lyme in San Diego

Advertisement


Question
I sure hope you can help me. I have been struggling for 1 1/2 years and am just about at my wits end. I was bitten in the summer in my back yard in Orange County, CA. I thought it was a mosquito. It didn't itch much, but I did develop a bullseye rash, which I outlined with a sharpie pen to see if it grew or not. It was swollen and hot to the touch. It disappeared in about 4 days. About that time, I was climbing some stairs and my thigh muscles began to ache, like I had just completed a strenuous work-out. I really didn't think much of it. Within a week, I developed serious muscle fascilations in both my legs. Within 4 weeks I was stuttering, forgetful, confused, and achy. I kept telling people I felt like I was going to seizure. Like there is this buzzing shake I can't explain. I had every test known to man. Everything came back fine. A year later, I am still suffering from all the symptoms, along with swollen glands, neck and shoulder pain, and severe depression(go figure). I have been diagnosed with fibromylagia, which doesn't really sit well with me. The muscle fascilations are so dibilitaing I don't sleep. I am so weary of being poked and prodded only to be told "I am having an anxiety attack". I finally convinced my doctor to have a spinal tap, which I hope will show something. I contacted the one and only Lyme doctor in Santa Ana, and she can see me in DECEMBER for 550$! I feel so defeated. All I do is go to work, come home and sleep. I am in constant pain and fatigue and fog. I cry just about every day and my family thinks I'm nuts. If there is a doctor you recommend in San Diego, I will travel the distance to see him. Also, what is your experience with Spinal Tap results showing Lyme? Thanks. I appreciate any help you can give me. Cindy

Answer
HI Cindy - thank you for writing. Sounds like you've been through a lot! But that was very smart of you to outline the rash with a marker to see if it grew in size (many times it can be a case of cellulitis caused by a puncture or bug bite which allows bacteria to enter the blood stream. Cellulitus rashes don't look like the TRADITIONAL bullseye rash, they are usually reddish/purple and feel hot and painful to the touch. Cellulitis sounds like such a minor condition, but it can be quite serious and require hospitalization. I have first hand knowledge of this because of a family member. She had JUST been gardening a few days prior in Virginia before coming out to visit me here in San Diego and became quite sick - rash, high fever, couldn't walk on the affected leg - and we took her to the ER where they admitted her for several days with IV abx. I only bring this up, because cellulitis rashes CAN look like a "non-traditional" Lyme rash. However, if you felt cognitive symptoms and achy joints 4 weeks after, that DOES sound more like Lyme Disease.

It's just my opinion Cindy, but I would skip the spinal tap and instead get a Western Blot Lyme test thru Igenex Labs or other Lab that specializes in testing for Lyme. The problem with regular labs is that they only test for ONE strain of Lyme when there are actually over a hundred.

We do have several excellent Lyme Literate doctors in the San Diego area, but if you are in Orange County, I may be able to recommend someone closer - there is one in Los Angeles if that is closer to where you live.

If you could to me a favor and send me an email to leahpuppy31 AT hotmail.com (use the @ symbol for "AT" of course!) - I can discuss this more privately. I look forward to hearing from you. If you don't hear back from me within a few days, please contact me again thru the All Experts site because sometimes mail gets sent to my Junk Folder even though I try and check that as often as I can as well. Don't worry - there IS help available out there!

In the meantime, I'd like to recommend that you go to this site: http://www.lymenet.org/BurrGuide200810.pdf
This is a guideline that many Lyme trained MDs use and on page 9 is a checklist of other symptoms that you might have experienced and not connected with having Lyme.

We also have several support groups - some on FB and one that meets every 3rd Saturday of the month at Scripps Ranch Library from noon to 2pm in San Diego. I know it's a drive for you, but this would be an excellent way for you to come down and meet other people with Lyme and many of whom are in the SoCal Lyme Group which I'm the admin of.

I look forward to hearing from you soon, Cindy!

Best,
Bonni

p.s. Cindy - if you write me back on All Experts and mark it PRIVATE, I can provide you with more information as well.  

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.