Q & A about Lyme

I was recently asked about Lyme vs Fibro and I wanted to share here what my answers were for those who might want to know.

Here’s the question – edited for privacy and space:

Thanks for posting this Tempest. A few years after a car accident I was diagnosed with fms. I haven’t had any thing I can take to treat it because I react in very negative ways to the medicine they have tried me on, allergic reactions. back about a year ago I had a bull’s eye looking mark on my arm and knew it was not something good,  The next day I felt terrible, fever, very bad headache, aches, pains. I called the doctor. Who told me to keep an eye on it this was a friday and they couldn’t see me. I ended up admitted to the hospital where they ran a lyme test that came back positive.

They also sent another blood test to a special lab in california that came back positive for lyme. My doctor treated me with 40 days of antibiotics, I had some other things come back not so good on my blood work, so they not only sent me to an infectious disease doctor, but a hemoc..hemotologist/oncologist.The ID doctor ran the same two lyme tests and they came back negative…he told me I did not have lyme disease. he said even having been treated for 40 days the test would have come back positive…my regular doctor does not agree with that and said the antibiotics would have caused negative results.

The odd thing is I have so many of the symptoms of chronic/long term lyme disease for so long, even before all these tests, that my doctor thinks I’ve had it even before that bulls eye mark. I had to report to our local center for disease control…they confirmed for me that in spite of other people thinking you can’t get lyme disease from ticks in florida, that you can, but the numbers aren’t that high.

when I was a few months old I nearly didn’t make it…all my parents know is the doctors told them I had “black measles” which also became known as rocky mountain spotted fever…caused by a tick bite…but in florida? My parents and I have concluded that it was “hemorrhagic measles”This was in 1963, so I’m not sure anybody had much information about this…I’ve tried to explain to my doctors that I think my ongoing problems have something to do with having that…none of them seem to think it’s of any consequence.

If you don’t mind, I would like to hear more of your experience with lyme disease and what if any treatments you have had. Did you get lots of headaches? I rarely have a headache free day, plus all the other symptoms of fms and or lyme.

Thanks in advance for your consideration! I hope you are managing the best you can and not suffering too much. Like Faefactory says…it’s nice to know you are not alone. 

And here is my answer. 
You said you have FMS.. do you mean Fibromyalgia syndrome? If so, here are a few things you might want to know about Lyme and Fibro. Lyme is an odd disease; it will mimic many other diseases. And because of this, it’s one of the hardest diseases to diagnose. Fibro on its own is very difficult and will cause:

Widespread Pain, Morning Stiffness, Fatigue, Vision Problems, Nausea ,Sleep Disorders, Urinary and Pelvic Problems, Weight Gain, Dizziness, Chronic Headaches, Cold Symptoms ,Temper mandibular Joint Dysfunction Syndrome, Multiple Chemical Sensitivity Syndromes,”Fibrofog“: Cognitive or Memory Impairment, Skin Complaints, Chest Symptoms, Anxiety, Depression, Dysmenorrhea ,Myofascial Pain Syndrome ,Muscle Twitches and Weakness, Weather related issues, menstrual issues, Troubles Breathing.

But when you look at those symptoms, it’s really hard to pick out of them which ones are Long Term Lyme disease and which are Fibro. It is thought that between 15% and 50% of those patients diagnosed with Lyme disease actually have fibromyalgia, Which is why my team have diagnosed my disease as Lyme with Fibro complications. Simply because I passed both tests for Lyme and Fibro.
Some of the key differences between the two are:
•meningitis
•severe muscle and joint pain
•dizziness
•heart palpitations
•neurological problems including memory loss, difficulty speaking, difficulty concentrating, and paralysis of the face (Bell’s Palsy)

But even as you look at it, it still looks like Fibro from a distance until you start taking the key tests to prove Lyme bacteria exists in your body. Understand that Lyme disease does become chronic in only about 5% of cases. Chronic Lyme disease, called post Lyme disease, does not respond well to treatment and can lie dormant in your body for years. People with post Lyme disease can suffer from recurrent symptom outbreaks for many years. When you are treated for Lyme, and it is active… the treatment will make you violently ill. It will make you feel in my opinion like you are dying. Your whole body responds with weakness, horrible pains, headaches, and more. The Herx reaction is when the Lyme bacteria start to die off in your body.

So yes, I do have headaches sometimes daily when I am in an active state. I had to change my whole lifestyle to fight my disease. I know my case of Lyme HATES heat, so a couple of times a week I have a very hot bath. It makes me feel sick. But it’s fighting for me. Once a month I am lucky enough to have joined a Massage Envy club for a heated massage therapy that I have covered by my insurance company as my team of doctors have advised due to low blood circulation that I have regular deep tissue massage. I have a team of physical therapists who work with my symptoms and help with massage, acupuncture, electric shock therapy, and chiropractic to help try to keep my body from locking down as it likes to do. I became a vegetarian and have found that I have a lot of trigger foods that cause pain and symptoms and I have to take them out of my diet. I maintain an average weight, even though my body would like to collect weight and working out can be painful. I go to the gym a couple of times a week and tell myself that I just want one more day with my family, and it’s worth the pain for them.

It seems like a lot. But it becomes part of life and fighting a disease takes time and effort. The worst thing anyone can do is to let the diseases tell us what we can and cannot do. I will be there for my children to hand me their babies. I will dance with my husband at our 50th anniversary party that I am planning 40 years in advance. And I will not be sad that I have a disease, because I refuse to let it take my joy

 

First published – May 24, 2011

 

11 comments

    • Exactly. There was a really long time where doctors wouldn’t diagnose Lyme because they didn’t have the right information about it. Even still people are having a hard time finding Lyme educated doctors.

      Like

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