Lyme Disease/lyme treatment

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Question
Hello from South Africa

I am anxious to find out which blood  tests are performed after antibiotic treatment.My daughter was bitten in the Cape Cod area MA and was treated with amoxicillin for 2weeks.She had the bulls eye and rash and when she went for tests she also had a pregnancy test.So she was put on the safer choice of antibiotics.Sadly she miscarried and after this event they did more blood tests and put her on 2 weeks of doxycycline. No other symptoms recorded.How do we know all is ok and also when is it safe to fall pregnant?Who can we contact regarding the most accurate and reliable blood tests.Thank you.

Answer
Dear Elizabeth - So sorry to hear about your daughter getting bit in Cape Cod and getting Lyme Disease. I'm a mother myself and can't imagine what I would do if my own daughter had to go thru what I've been through.

I can tell you that being treated for Amoxicillin for 2 weeks is not even the minimum that IDSA (Infectious Disease Society of America) and even THEY base their guidelines on very antiquated studies and research. Most Lyme trained doctors in the U.S. go by Burrascano's Guidelines which I highly recommend you read. You can view them at: http://www.lymenet.org/BurrGuide200810.pdf

ESPECIALLY if she had the Bullseye rash - she should have been on antibiotics for a MINIMUM of 30 days if not longer. I do understand however, if she was pregnant, why they would have been cautious. Very sorry to hear about her miscarriage.

Doxycyline IS the antibiotic of choice but again, 2 weeks is NOT anywhere long enough. To put it in perspective - if a patient has a severe case of acne, sometimes they are on antibiotics for up to 6 months. If they have Tuberculosis, sometimes up to a year. Certain parasites? Up to 2 years. Because it's Lyme, however, and there is SUCH a controversy over treatment with antibiotics, people are suffering because they aren't being given enough to completely eradicate the bacteria.

On page 9 of Burrascano's Guidelines, there is a checklist. I would suggest going thru the checklist with your daughter and seeing if there are ANY other symptoms that she has that you might not have connected with having Lyme. As far as your two questions:

1) When will it be safe to get pregnant - I am not a doctor and therefore I can't give you medical advice, however, if your daughter still has the borrellia burgdorferi bacteria (Lyme) in her system, there are many in the medical community that believe that it can be passed to a patient's unborn baby. I would concentrate on making absolutely sure that she has gone at least 6 months with absolutely NO symptoms and again, this is just my personal theory.

2) Regarding testing - there are two tests that I would ABSOLUTELY recommend. One is to find a doctor who is willing to draw her blood and send it to IGENEX Labs in Palo Alto, California. They have the most sensitive testing in the country for Lyme and I would also have her tested for co-infections that "piggy back" onto the Lyme bacteria. The most common are: Bartonella, Babesia and Ehrlichia. These co-infections can cause many of the symptoms that Lyme presents and can sometimes lie dormant in the body until a triggering event causes them to flare up.
The second test to see how well or badly her immune system is able to fight the Lyme Disease is a newer test called the CD57 test. This test should be done through Lab Corps and for more information on this test - you can read about it at: http://www.healthcentersofamerica.com/information.cfm?id=144

Elizabeth - I hope I've been able to help. Hopefully you can find a doctor in your area that is willing to draw blood and send it to these labs to put your mind at ease. If you visit the Igenex Lab site, you can request that they send you a free special kit which has all the instructions for the lab as to how to draw the blood, it has special vials inside and has a Fed EX overnight package to send it to the lab in California. I know many patients have been doing this from Australia, so hopefully this won't be a problem from South Africa.

I wish you luck and am happy to answer any other questions you might have. Please keep me posted!

Best, Bonni

****************************UPDATE TO ORIGINAL ANSWER***********************

Dear Elizabeth, I happened to have an appointment with my LLMD (Lyme Literate MD) today and I brought up your question about your daughter becoming pregnant after having Lyme Disease. Obviously you would want to speak to your own doctor about this, but he said in a "hypothetical situation", he would advise a woman who had formerly had Lyme Disease to take Amoxicillin throughout her entire pregnancy to avoid ANY possibility of passing the Lyme bacteria onto the baby.

There is a wonderful documentary about Lyme Disease called "Under Our Skin" which addresses this situation in one of the segments - a pregnant woman who had Lyme gives birth to her baby and they immediately tested the placenta for Lyme. It came up positive.

I just don't think there is enough research in this area to emphatically state that Lyme can NOT be passed on to the fetus so I wouldn't take any chances. Again, the question posed to my doctor today was based on a hypothetical case, but I would urge your daughter to talk to a Lyme Literate doctor before she plans on becoming pregnant again.

I hope this helps, Elizabeth and I wish you all the 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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