Lyme Disease/Possible Lyme?

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Question
Hi Bonni,

I saw your posts in AllExperts and was hoping to ask you a quick question.

In the last four months I seem to have developed a lot of nerve pain in my hands, numbness, tingling, and joint stiffness & pain. One doctor thought it was carpal tunnel, the second Rheumatoid Arthritis. Then most of the symptoms went away for a few weeks, also while I was doing a natural detox treatment.

Because I have chronic kidney disease I sometimes have fatigue although it seems to be much worse recently. And it seems like other nervous system effects in general like feeling weak and kind of "toxic" most of the time.

I haven't had too many tests yet (CRP is basically negative) but I was wondering if you think it would be valuable to test for lyme. I can get the basic test in Canada but it sounds like you usually need to get the more extensive testing to be clear on it.

All of the nerve and joint pain seems to have come on fairly suddenly, and did coincide with a period of camping on the Sunshine Coast of BC.

I never had anything that I knew to be a tick bite that I've seen, but the level of symptoms seems a bit intense and sudden.

Also do you think this clinic seems specialized enough in lyme testing & treatment? http://www.pannaturopathic.com/Index.html

with Thanks,

Ong Kar

Answer
Dear Ong,
Thank you for writing. I'll do my best to answer your questions.

Diagnosing Lyme Disease can be tricky because many of the symptoms can be indicative of other conditions and conversely, other diseases may present symptoms which turn out to be Lyme Disease. The symptoms you mentioned:

". . . nerve pain in hands, numbness, tingling, and joint stiffness & pain" ARE some of the many symptoms of Lyme Disease. However, there are other factors which should be considered: Did you experience flu like symptoms in the beginning? Are you fatigued more often and just feel "unwell" all the time? Were you (or have you ever been) in a Lyme endemic area? Did you ever develop the tell tale "bullseye rash" (many Lyme Disease patients don't, so this doesn't rule it out if you didn't develop one)

Because you have a chronic kidney disease, it does complicate matters because there may be other conditions causing these symptoms.

I'd like to share a few resources which may help you learn more about Lyme Disease. The number one link that I encourage people to read is Dr. Burrascano's Lyme Treatment Guidelines. Pay special attention to page 9 and see how many other symptoms you may have experienced and not made a connection. You can view this at: http://www.lymenet.org/BurrGuide200810.pdf

You mentioned that you had a CRP test. If it is in the higher than normal range, this can indicate inflammation in the body which many Lyme patients experience, however, it's not an absolute indicator of Lyme - in fact, my CRP was within normal ranges in the very beginning. What you really need is to have a Western Blot test which will test your blood for antibodies that have formed in response to fighting off the bacteria that causes Lyme, called Borrelia Burgdorferi. Unfortunately many local labs use different testing methods and therefore can give people a false negative when in fact, they DO have Lyme Disease.

For this reason, I would HIGHLY recommend that you talk to your doctor and ask him/her if they would be willing to draw your blood and send it to Igenex Labs in Palo Alto, CA. This is one of the top Lyme testing labs in the country and for your own peace of mind, I would suggest going this route if you do decide to get tested for Lyme Disease. You can begin the process by calling Igenex and request that they send you a free testing kit which you would then bring to your doctor. It contains all the specific vials for the blood draw as well as explicit instructions on how to handle the specimen and Fed Ex it to Igenex Labs.

If you need assistance in paying for your Lyme tests, you may want to visit http://www.lymetap.com/ to see if you are eligible for help. In many cases, they can reimburse you up to 75% of the cost of the tests if you qualify.

To complicate matters even further, there are several co-infections (which you can read about in Burrascano's Guidelines) that have to be tested separately from the Lyme Western Blot and can cause many of the same symptoms of Lyme.

The fact that your nerve and joint pain seems to have started suddenly and after a camping trip, does raise some red flags and I think that you are right to be concerned. If indeed you DO have Lyme Disease, the longer you go without treatment, the higher the chances you have of developing a chronic Lyme condition which in some cases can take years to recover from. I speak from personal experience on that one!

If you need assistance finding a doctor who is trained in treating Lyme Disease, I would suggest going to www.lymenet.org and clicking on FLASH DISCUSSION. There you will be able to post a request for an LLMD (Lyme Literate MD) in your area and someone should get back to you. I have spoken to many people with Lyme in Canada so I KNOW that there IS Lyme Disease in that country as well.

Finally, you asked about the clinic:  http://www.pannaturopathic.com/Index.html. Unfortunately I am not familiar with this clinic so I couldn't give you an educated opinion about it, but you may want to post a question about it on the FLASH DISCUSSION board at the site I mentioned above. Perhaps one of the members of the forum may have heard of it.

I know that I didn't really provide you with any concrete answers, but I do hope that at least I've given you some direction to go in. If there is one thing I've learned from having Lyme Disease is that if you KNOW that something doesn't feel right with your body, then TRUST your instincts! And unfortunately, because there is so much misinformation about Lyme, you may encounter resistance with some mainstream primary doctors who will tell you that Lyme Disease is rare, or there is no Lyme Disease in your area, or if they DO treat you, they may give you  as little as 10 days of antibiotics and pronounce you cured. Thankfully there ARE people who are continuing to do research on Lyme Disease and many groups are working hard to spread awareness about this potentially debilitating disease.

I wish you luck and please don't hesitate to write again if you have additional questions.

Best,
Bonni  

Lyme Disease

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Bonni

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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.

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