This forum is for questions and support regarding What Causes Lyme Disease, Diagnosing Lyme Disease, and Joint Pain. Topics for discussion also include Living with Lyme Disease, Babesia, Bartonella, Rocky Mountain Spotted Fever, Anaplasmosis, other Tick Borne Diseases, Nervous System issues, Prevention, Risk Factors, Skin Disorders, Symptoms and Treatments
Can anyone help me? When I was 12 I was diagnosed with Lyme and treated with IV meds for about 2 months as far as I can remember. I never had any positive proof that I had Lyme. i was treated symptomatically for light sensitivity, joint pain, and severe exhaustion. i had previously been in northern michigan and perhaps been infected there. My symptoms improved, though I had some residual fatigue and joint pains. But I was much better. I lived in that "better" state for about 11 years until I got hit rather suddenly with severe exhaustion, headaches, and major cognitive changes. I felt drunk, brain damaged, unable to think or do simple calculations. It is now about 9 years later. These symptoms however have improved to a degree although I am not nearly altogether better. i would say that if i dropped to 30% of normal functioning at its worst, i am now at about 70% normal functioning. The notion of a Lyme relapse came up. Before I head down that road I wanted to know if that makes sense. If I was having a Lyme relapse (or reinfection for that matter) does it make sense that my symptoms would improve in any significant way? Any ideas or info would be great. Thanks!
Welcome to MedHelp -- I'm sure others will weigh in as well, but here's my take:
It looks like you live in NJ -- and it's possible you've been re-infected more than once, without knowing it. (I never saw the tick that got me, and suspect I was bitten more than once -- the first time I got that miserable aching and brainless state, it eventually faded away, and then when it happened again a couple of years later, it hit me so hard I HAD to find a doc to figure it out.)
I think we (as a society) are used to getting sick, getting cured, and carrying on ... but don't take into account persistent, low-lying infections that may be beat back but then just lurk in the background till there is a re-infection or perhaps another illness or stress that weakens the immune system, allowing the infection to rise up again. Who knows.
The point is that you're having symptoms, and whether they are an old infection, or a new one, or a new one on top of an old one, the important thing is finding a doc who can piece together what's up.
In Lyme, there's little that is clear cut, and the co-infections (like babesia, bartonella, and a few others) just complicate the symptom picture. Thus the need for a doc who understands all this.
In your situation, I'd send an email to
contact [at] ilads [dot] org
and tell them where you live and how far you can travel. They can send you back names of docs in your area. ILADS is short for International Lyme and Associated Diseases Society, and it's the main voluntary group for docs who take Lyme and its coinfections seriously. I went through 20+ experienced, highly trained MDs before I found my way to a Lyme specialist, and that made all the difference.
Lyme specialists are sometimes called "LLMDs" by patients, but it's not a degree or official title. It is instead a nickname for docs who think bigger and more progressive thoughts about Lyme than mainstream docs do. An LLMD can be a GP (general practitioner) or internist or any specialty: it's the point of view that counts.
Your final question above: "If I was having a Lyme relapse (or reinfection) does it make sense that my symptoms would improve in any significant way?" Answer: yes. Your immune system can suppress and battle these infections quite well sometimes, more in some people than others, and at different times in the same person. Lyme bacteria can hide in the body, making it hard for the immune system to see and therefore kill them. Then a big stressor, like another illness, or a reinfection, or a big life event (whether good or bad), and the immune system falters a bit: boom, Lyme comes out to party.
Lyme and other infections can be chronic, but docs generally aren't wise to the idea that Lyme is like that. That's why an LLMD is, in my untrained, nonmedical opinion, the way to go. It worked for me and others I know.
Hope this helps -- stay in touch, let us know how you're doing, okay?
In my case, I was bit over 20 years ago. I was ill but not too ill not to work all those years until 18 mos ago when the Lyme came out full force. My LLMD says that it can lay dormant and something ( in my case an emotional shock) brought it out.
I saw the tick 20 + years ago but never had a rash and really didn't know about Lyme, otherwise I would have been treated properly.
Jackie is right, finding an LLMD is the next step.
I would guess that you were never cured from your original infection. Possible re-infection later can make you worse, especially if you picked up a coinfection such as Bartonella, Babesia, Anaplasma, or one of several other tick borne diseases.
You will definitely need to see an LLMD. Despite having a long term infection, you can still get better with long term antibiotics.
Oh, and on the question of improvement, sometimes Lyme symptoms come and go, or wax and wane. I had a nearly five year cycle of relapsing remitting attacks of severe fatigue, headache, and malaise. I would be well for several months in between.
Often, stress or big life events can trigger changes in the body that reduce your immune system's ability to fight off an infection. Diet or other lifestyle changes can also trigger changes, along with age and hormone changes.
There are many stories of people muddling along with low grade infections that eventually flared up into full blown symptoms years after the initial infection.
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