Lyme Disease/Lyme Disease

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Question
Dear Bonni,3 years ago i had randomly swollen glands for about 8 months,fatigue and pneumonia with no clinical symptoms.antibodies were really high.Started with moving pain in my head,is now in my whole body except joints although i do get constant stinging in my hips.My face also stings and i have felt burning in my eyes.Eyesight getting worse.Had tests for hepitas and lupus,all negative.My doctor recently started me on doxy when i insisted although i dont think he believes it could be Lyme disease.I did have a herx reaction to antibiotics for about 5 days.Pain is contiuing,but i have had spells in between were it calms down apart from my ribs which nip like mad.I live in Scotland were there is a massive ignorance about Lyme Disease.Do you think i do have it?.Greatful for any advice

Answer
Dear Linda,
Thank you for writing, and I apologize for the delay in responding. Your symptoms ARE those that present with Lyme, but unfortunately they are indicative of other conditions as well. This is why Lyme Disease is so frustrating because it can mimic other diseases and vice versa.

The first thing you need to do is get tested for Lyme through a lab like Igenex in Palo Alto, CA. I believe that your blood can be shipped overseas thru Express mail - I would visit their website for more details. There are other labs that can test for Lyme and other co-infections, but Igenex is the best in the U.S. I'm not familiar with any in Europe, but it's possible there may be some.

Five days of Doxycycline is not going to cure Lyme - I wish your doctor had given you at least a 28 day supply. That's the bare minimum according to IDSA guidelines which themselves are outdated and inaccurate. I would urge you to do two things: Watch the film "Under Our Skin" - it's available online to watch for free or you can view it on Netflix Instant Watch (not sure if you get that there!)

Yes there is a lot of ignorance about Lyme Disease in Europe, however, it IS becoming more and more of a health issue and there are actually many researchers in Germany and I believe Holland, who are doing studies on it. The problem is, that technically "Lyme Disease" comes from the bacteria "Borrelia Burgdorferi" which is a different strain than the ones showing up in Europe. So if they test you to see if you have antibodies to the Lyme bacteria, it's going to come out negative. What you would need to do is have your blood tested by a lab that tests for the European strain.

Here is a link to MDL labs (which is another good testing facility I believe on the East Coast of the U.S.) http://www.mdlab.com/pdf/lyme_disease_testing.pdf.
This document talks about the strains in Europe which are: Borrelia garinii and Borrelia afzelii.

Some more good reading about Lyme treatment can be found by one of the top Lyme doctors in our country, Dr. Burrascano. Go to http://www.lymenet.org/BurrGuide200810.pdf to read his Guidelines for Treatment which is used by all the well trained Lyme doctors in the United States. If you are unable to find a trained Lyme doctor in your area, you may wish to consider trying a naturopathic approach which has been found to cure some cases of Lyme. Many herbs and supplements act as natural antibiotics (such as Grapefruit Seed Extract and even Coconut Oil!) - for more information on this, I would suggest reading Stephen Buhner's book "Healing Lyme". It is an excellent book and many people use a combination of Buhner's methods on top of traditional antibiotics.

I hope this helps or at least gives you some direction to go in. Above all, I urge you to see the film "Under Our Skin" - it will answer SO many questions you probably have about Lyme Disease and the more educated you are about it, the better you can be your own advocate.

My very best wishes for your healing,
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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