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Lyme Disease/Long term effects of mulitple Lyme diagnosis



I am a 48 year old female who has been diagnosed with Lyme three times. I've had three bites, three bull-eyes and three rounds of Doxy.

The first time, the bull-eye was on right hand side of the back of my head, near my neck and it went untreated by a local doctor who said there was no cure and to go home and soak in a hot bath.

Afterward, every few months I became almost crippled for several weeks at a time and could barely walk. The fatigue and overall sickness was unbearable.

Finally, I was at a store and was so ill, I was taken the ER where I was dianosed with Untreated Lyme, given Doxy (the first time) and after three days could dance a jig!

The second time, I felt bad and went to another doctor who found the second bull-eyes on my left shoulder blade. I was given Doxy right away.

The third time, my dog was diagnosed on a Monday and me, the same week on Wednesday. The bulls-eye was on the inside of my left thigh. This time, it was bad, real bad.

I have never felt so much pain and so close to death. I was bedridden for four (4) weeks and thought for sure I was going to die.

That was about four years ago. I do not drink, smoke or do drugs however I have been under a lot of stress lately due to a recent move.

When the flare up begins, it starts in my right wrist and extends out through my hand and fingers. It soon spreads to other parts of my body. This pain started this morning.

The pain is now in both wrists, boths hands, both knees, my collarbone, shins and my back. I am also getting a headache.

At times, I get severe headaches, I am very forgetful and sometimes just feel "weird", disorientated and dizzy.

My fear is what are the long term effects that I can be prepared for or are they different for everyone?

I have been told by several people to apply for disability however that is not my style but I am afraid for my future.

Three times is unreal!

Thank you so much for your time.


Dear Lisa, my heart goes out to you because I have heard so many stories practically IDENTICAL to yours, so know that you are not alone! Lyme is such a misunderstood disease and there is so much bad information about it that thousands of doctors are completely ignorant about proper treatment, unless they have been specifically trained.

Every single symptom you described is what I personally have dealt with - because I was not treated for 8 months (after dozens of doctors and hospital visits) and by then I had developed neurological symptoms where the Lyme bacteria crosses the blood brain barrier and by then, the only way to treat it is by IV antibiotics (which is what I finally began about a year and half after I was bit). After 5 weeks of IV abx, my (at the time) SEVERE neuropathy in my arms and legs began to subside from a 10 to about a 5. It took another year of IV treatment to get it down to an intermittent pain but thankfully it's not 24/7 anymore. The forgetfulness, the "weird" feeling, dizziness, are ALL symptoms that I've struggled with and many of my fellow Lyme friends as well.

I personally had to quit my job within weeks of getting sick and eventually had to go on disability because I had no way to work. It was quite a humbling experience, believe me, but I had no other choice. I kept putting it off, because I thought I would get better, but after 2 years of being sick, I had to break down and apply (successfully thank goodness!) for SSDI. I know dozens of Lyme patients who are all in their 20s, 30s and 40s who were extremely healthy, gainfully employed and after they got sick, they had to quit their jobs and go on disability. It's not something to be ashamed of, although I understand your reluctance. I was that way at first too.

I would like to know what area of the country you live in that you got bit THREE times - I can also hopefully help you find a good Lyme Literate doctor in your area, as well as local support groups which are ESSENTIAL for your wellbeing. I go to one once a month in my city and have become good friends with many of the people there because sometimes they are the ONLY people who understand what I'm going thru! Otherwise it can be a VERY lonely disease, because you become very isolated.

I look forward to hearing back from you, Lisa, and hang in there! There IS treatment available and as far as long term effects, it's possible that you may have minor symptoms for the rest of your life, but at least you can get back to a higher functioning level. Unfortunately it can take years of treatment, but once you are on the right track, your symptoms will become less and less debilitating. Also, I would highly recommend you watch the film "Under Our Skin" - you can view it on Netflix and I believe it's still available online to watch for free.

Another document you should read is Burrascano's Guidelines. On page 9, there is a checklist of symptoms. I would encourage you to read the whole thing - there is some very good information there, and this Treatment Protocol is used by many of the well trained Lyme Literate MDs in the U.S. You can find it at:

My very best,

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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.


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! :)

Local and National Lyme Groups including CALDA (California Lyme Disease Association) Southern California Lyme Group MD Junction Lyme Group

I have a blog called which I definitely need to update since my last post, but it DOES have a LOT of useful links and information!

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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