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Kinda O/T feeling encouraged.

My4kidsmom's picture

I have been a member on these boards for a couple years now and I've never posted this much!
Why is that encouraging you ask?
Well because even though I read every day, I rarely respond because I don't have the energy and/or can't get my thoughts in order.
Well I'm on week 3-4 of treatment for Lyme disease and I think I might be getting my brain back!
Whoo hoo

Comments

My4kidsmom's picture

It mimics many other diseases symptom wise. Fibromyalgia, CFS, MS, rheumatoid arthritis, etc.
Fatigue, pain, pain, pain, cognitive dysfunction and other neurological manifestations like tingling/numbness/burning, muscle twitching, vision problems, and many more.
I have a Masters in nursing and was an ICU nurse my whole career and at 40 years old started forgetting what meds were for and being so fatigued I couldn't concentrate. I have been medically retired for 3+ years now and was getting worse. After 8 years of being sick, I was finally tested for and diagnosed with chronic Lyme disease.

BarkAtTheMoon's picture

I'm so glad you're on the mend and feeling better! I know this must certainly have been a terrible struggle for you, second guessing yourself, not getting answers.....I know the feeling all too well!

I didn't know there was chronic Lyme disease, but I guess that makes sense. That's because it never goes away, right? You'll always test positive for it? Could you say it goes into remission? I find this very interesting, given all of the crap I have dealt with where my fibromyalgia is concerned.

I just took the last 6 months of 2014 to wean myself off of low-dose Lyrica because my muscles were so stiff from it. Initially with Lyrica, the pain was blocked, but my numb muscles were stiff as a result. I couldn't stretch at all to get any relief! I would hold a stretch for 2 minutes, very patiently, and I would just stiffen up in ten minutes. It was awful.

I still have the tremors that you can feel but can't see--they are below the surface, mainly in my legs. I tingle a little bit in my hands and fingers. I have moderate disc degeneration in my c6 and c7. I have also had juvenile diabetes for over 30 years, but no neuropathy yet. My biggest problem with FM was that my neck was so stiff that my mobility was really bad. I woud shuffle on bad days, with one hand trailing along the wall at work. Or I would try to make it from point A, ten feet across the way to point B without losing my balance. It was horrible. I couldn't listen to music in the car because it would be sensory overload for me and impair my driving even more. No way could I drive on the highway! I could barely drive over 45mph. I hit 60mph a couple of weeks ago for the first time in three years without feeling like I was going to faint.

Oh, and two years ago I got SD19 and SD13 full-time, so there's that. Biggrin No, NO STRESS in MY life! Glad you're doing better!

~ Moon

My4kidsmom's picture

Without getting into too much medical mumbo-jumbo.... When your body has fought off an infection it "remembers" the germ it encountered. This is reflected in the IgG in your blood-which is the memory of the immune system. Another marker IgM is a marker for a current infection your body is fighting. This usually transitions to the IgG about 6-8 weeks after the infection is over.
That's how it works in MOST infections but apparently not in Lyme disease.
In Lyme, the bacteria basically shape-shift. It has something called epitope-switching which basically tricks the body into thinking its a new infection. That's why even if you've had Lyme for years your IgM levels stay elevated. Lyme is also an anaerobic bacteria which means it thrives in an oxygen poor environment. This includes the tissues, joints, brain etc. That's why there are so many false-negatives on the most common Lyme test. The bacteria hide OUTSIDE the blood stream, so more difficult to detect.
Ok so I did use a lot of Mumbo jumbo but that's the simplest way I know to explain it.

My4kidsmom's picture

Sound/light sensitivity, tremors etc.are all part of Lyme symptoms. The CDC just revised their estimate of new infections fr 30,000 per year to 300,000 per year!

BarkAtTheMoon's picture

Girl, I love mumbo-jumbo. I speak your language!

Seriously though, I think I might get tested....... Sad

~ Moon

My4kidsmom's picture

You have to get tested by Igenex labs! They test for like 23 different bands. The Elisa is false negative about 50%+

JustAgirl42's picture

I was diagnosed with Lymes about 18 years ago. I tested positive with the Elisa and Western Blot (?) tests. I think I took Doxycycline (?) for a week or two, but I don't know how much time passed between when I got infected and when I was treated.

I've often wondered if I got tested for it again after all these years, would I be positive if the initial treatment wasn't effective?

I don't have many symptoms, but every couple of weeks I feel sick, kind of like I have the flu, but no fever...weak and achy.

My4kidsmom's picture

The standard 21-30 day antibiotic treatment is often effective if started right away. 1 week is not enough. The concerning thing about what you said is the cycling of the symptoms because Lyme growth stage is responsible for a cycling pattern of symptoms followed by less symptomatic or well periods. The only thing that should be positive if you're not currently infected is the IgG. The IgM can only be positive if you have an active infection.

JustAgirl42's picture

Interesting. I definitely didn't take antibiotics for more than two weeks. They may not have known back then how long you needed to take them for. I guess it's possible I still have it. Are you saying that I would only test positive if I had the test done during a period that I wasn't feeling well? It's weird, the sick feelings only last about two days each time.

Thanks for the info.!

My4kidsmom's picture

I think you would test positive even without symptoms however Lyme disease is a clinical diagnosis that is based on symptoms. The lab tests are only supportive labs. The current testing is horrible for accuracy. Lots of false negatives.
The best lab nationwide that tests for all the bands in Lyme is Igenex but you have to request that particular lab. Most people call Igenex, order a test kit and have their doctor sign the order.

My4kidsmom's picture

Thanks Ditzy! I love the real housewives! Yolanda is a true lady! She has a video on YouTube about her battle with Lyme that is so good.

BarkAtTheMoon's picture

Thanks for all of the info, My4! Here's to a good day for you today. We'll try to post juicy stuff for you to read lol. Blum 3

~ Moon