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Lyme Disease/reoccurring lyme

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QUESTION: Had lyme rash in 1972,all symptoms,stiff neck and very ill for 2 years. Missed 67 days of school in 1974 so DOC finally took out tonsils. Docs did not know what lyme was so treated for ring worm and spider bite. Fast forward to 2006 I had a head injury and knocked out for 10 minutes. Got sicker and sicker saw all sorts of docs and specialists. Never,yes never had a positive test for lyme or any co infections. Seen 3 lyme docs' Finally a 2 hour seizure and answer to prayers my neurologist admitted me for 2 days and Sent  me home with antibiotics for 10 months. That was May 2011 to Feb. 2012.  NOW I am having severe pain again and the tingling is on both sides of body. Should I go for a spinal tap or what? Thanks

ANSWER: Dear Paula, if it were me, I would insist on getting a Western Blot test for Lyme and make sure it's sent to a lab that specializes in testing for Lyme Disease. One lab is Igenex, and there are also a few on the East Coast.

The problem with getting a spinal tap to test for Lyme is that it's not very accurate compared to the Western Blot tests. If you still have a Lyme Literate MD, I would make an appt and request an Igenex Lyme test. It's quite possible that you may still have Lyme Disease OR you could have a co-infection which was never eradicated. And one other possibility is that you may have been re-infected after your initial bout with Lyme.

I hope that helps - I wish you luck and please write back if you have any other questions. I know how frustrating it must be. Also, if you do write again, please let me know what area you are in and I can see if there are any Lyme Support Groups in your area.

Best,
Bonni



---------- FOLLOW-UP ----------

QUESTION: Hi Bobbi,    I have already been tested by Igenex. Doctors here in the Poconos in Pa will not do the western blot if you do not initially test positive on the first test. My family DOC was the one I asked.  He then insisted I see a shrink for bipolar and somataform. When I refused he dumped me.  I traveled 15 hours to a lyme literature DOC in NJ. After over40 years with lyme I think my body interprets the Spirochets as part of itself.  Called my lyme doctor here. He does not take my insurance and I do not have $500'00 cash.

ANSWER: Dear Paula, I think I have a solution for you. There is a wonderful organization called "LymeTap" (just Google their name and you'll bring up their site) What they do is give financial aid to people who can not pay for Lyme tests as WELL as co-infection tests. I've used them and know MANY people who have been helped by them. You just have to fill out the paperwork, take it to your doctor and in some cases, they will send you the money BEFOREHAND to the lab versus being reimbursed. These tests can be anywhere from $500 on up (depending on which ones you have done) so LymeTap could cover I "think" about 80% of your cost! Also if you can get the PCR DNA test in addition to the Western Blot - if it's positive, then there is NO doubt. It basically picks up fragments of the Lyme DNA in your blood (mine was positive)

Re: the doctor who told you to see a "shrink" because of your symptoms, I can't tell you how many doctors have told patients this only to find out later that these same patients were CDC positive for Lyme. I don't have to tell you what I think of these doctors.  

When you mentioned that you'd received a test from Igenex, Was it positive? When did you have this test done?

I still think there's a good chance that you could have a co-infection, if for some reason your Lyme tests are coming up negative over and over, it took me a few years to find out I also had Bartonella - once I started treating, that, I began to feel a VERY big improvement for the first time in a while.

Look into the LymeTap program - I think that would be a good way to go.

Thanks Paula,
Bonni

---------- FOLLOW-UP ----------

QUESTION: Hi Bonnie,
I was initially tested for 5 years by differing doctors and begged for a western blot. NONE HERE IN THE POCONOS would oblige. You and I probably share the same opinions about some docs. After a 2 hour seizure in MAY 2011 my neurologist tested me and I was still negative. However he learned about lyme and gave me intravenous antibiotics 2 days and sent me home with oral antibiotics for 9 months. HE IS now a lyme DOC here in the Poconos.

After9 months I went for another opinion in NJ to the top lyme specialist who tested me using Igenex. No confections or lyme were positive using Igenex. She told me to stay on the antibiotics.

2 Months later I went to an infectious disease DOC and he said the latest research showed after 1 year of antibiotics there would not be much more improvement.

That was winter 2012. I was doing pretty well till a family crisis at the end of August. Since October My pain has increased to a 10 plus daily and nothing helps. I sleep 2 hours at a time. 3 weeks ago. I HAD a herpes simplex 1 outbreak and am getting progressively worse by the day.




Hopefully the LymeTap program can help me.
Thank you for your help.

Answer
Hi Paula, I'm crossing my fingers for you that LymeTap will be able to help out. I KNOW how frustrating this can be. When you mentioned having a family crisis that triggered a flareup for you, I completely understand. This has happened to me in the past during treatment and I know MANY people who have gotten worse when they experience a stressful incident in their lives. It's so important to take care of yourself mentally and try and do what you can to keep a positive attitude and get your sleep back to normal. (I also had major sleep issues too!) We need a good amount of sleep to help regenerate our bodies, so if you're not sleeping well, that would definitely affect your recovery process.
Perhaps meditation, or even talking to a therapist who specializes in chronic illness. That's what I began doing a few months ago and it REALLY helped a lot to talk about how my illness has affected my life so much. Just throwing that out there! :)

Also, I wanted to give you a link to Dr. Burrascano's Guidelines which many LLMDs follow. It's at: http://www.lymenet.org/BurrGuide200810.pdf
There is some very helpful information there.

I'm rooting for you Paula!

Best,
Bonni

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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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