# Lyme disease can sneak up on you



## Maria (Apr 24, 2003)

Lyme. Borreliosis. Master's Disease.

I never had a rash. I don't remember ever having flu-like symptoms. I just had an increasing litany of *weird* medical symptoms that mystified doctors whenever I'd mention them. Since they weren't debilitating, I found ways to work around them.

My husband has most definitely had Lyme disease for 8 years. He was diagnosed back then and went through 8 weeks of doxycycline and then had a few relapses every year, but we believed the CDC website that claims there is no chronic lyme and that the damage to his nervous system would eventually heal.

This year, however, he crashed and crashed hard. We finally had to face the fact that he wasn't getting better. He got an appointment to see a local doctor who specializes in treating borreliosis (as the doc insists on calling it) and while I was helping my husband fill out the MANY questionnaires, I couldn't help but notice that I could have answered "yes" to many more of the questions than my husband could even though my symptoms were much less severe. My husband started treatment and was soon much, much improved.

To make a long story short, I got in to see that doctor a month and a half later, and the western blot test came back positive. And not just a little bit positive. There are 11 "bands" on the blot test and it takes 3 (of the right ones) to be positive by CDC standards. I had eight of them positive! And this is the test that measures active infections! These aren't old leftover antibodies from a long defeated enemy. These are antibodies that have been used in the past month.

This is very perplexing to me. I was never *very* ill with this, and my symptoms don't really resemble my husband's at all. While he had severe joint and muscle pain that almost crippled him and a mental fog that nearly cost him his job-- I had severe foot pain, distressing gastrointestinal issues, and a little bit of joint pain that never lasted long and kept moving around. And some minor muscle pains that I thought were teeny tiny cramps. And some brain fogging that cleared up with treatment for hypothyroidism. I never missed a day of work, not even for a cold. I just wasn't really sick.

And yet, here I am with a raging Lyme disease infection according to the antibodies they found. The disease that destroys lives and wreaks your health according to everything I've read and watched this year.

My conclusion is that this disease hits people different ways. There are probably a lot of people out there chronically and mildly ill like I was who don't know what they are carrying.

I'm so glad I haven't been allowed to give blood (we lived in Europe during the mad cow scare there). If I had followed my father's example, I'd have my 10 gallon donation pin by now, and infected who knows how many other people! As it is, I gave blood once when I was 19 and became ineligible shortly after that. My conscience is clean on that score.

Our doctor says that anyone who consistantly refers to their medical problems as "weird" ought to be evaluated for borreliosis. It can cause virtually ANY symptom. My symptoms are so different from the standard Lyme symptom list that my search for "what was wrong with me" would never had led me here on my own. 

Most doctors in Missouri will tell you "There is no Lyme in Missouri!"

They are wrong. I've spent very little time outside this state the past 20 years and the only time I spent any time in a Lyme endemic area was Ft. McCoy, Wi in the mid '80s. So I've either had the disease for nearly 30 years or the CDC Lyme disease map means nothing.

It's a sneaky disease. I find it fascinating.


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## HermitJohn (May 10, 2002)

Just curious if your brain fog is worse when atmospheric temps are higher like triple digit? Dry hacking cough that comes and goes? Dizziness?

I keep thinking of going back to the doc but he is not a morning person and I dont have air conditioning in car. Makes me afraid of driving just to get to the doc since weather is stuck in triple digits now. Waiting until weather cools some. I am better in cooler weather. Can think clearer.


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## Maria (Apr 24, 2003)

I'm still very heat intolerant. I don't know that I'd say brain fog is increased, but I feel seriously *bad* in hot weather.

My husband is a month and a half ahead of me in treatment and right about at the 1.5 month mark, he got over his heat intolerance. So I'm hoping that in another couple of weeks I'll be there, too.

As for coughs-- I used to cough a lot. Dry, hacking coughs that continued until I was out of breath. Prescription meds couldn't stop them. What finally worked was me figuring out that it was some kind of nerve misfire. What I actually needed to do was burp. So nowadays, when I find myself coughing- I stifle the urge and trigger the burping. The urge to cough vanishes. Weird, huh?

I just got back from a follow up visit with a neurologist to learn about the results of an MRI that was done a couple of weeks ago. Most of my brain is normal, but the white matter of my cerebrum is shot through with teeny tiny areas of damage. I'd started this process with the neurologist before I got in to see the Lyme doc, so it was nice to know ahead of time what was causing the abnormalities in the scan.

The neurologist isn't convinced it's Lyme damage- but agreed to recheck in a year, no other action necessary. He says the good news is there's no atrophy or large patches of damage. Just a bunch of tiny little dots in one area of my brain.

I saw a case study online concerning some Lyme patients. Their MRI's looked like mine at first. Over the course of 2 years of antibiotic treatment, the dots went away. I assume mine will do the same.


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## lurnin2farm (Jun 10, 2012)

Was your diagnosis actually Lyme disease? If so I am surprised you got it in Missouri. I am originally from the area in Ct where this originated. Old Lyme, Hadlyme area. I have always lived in the country and even living there most of my life, never got this. If it is what you have I wish you the best with it.


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## Maria (Apr 24, 2003)

I was surprised, too. But the report from the lab says a positive result suggests exposure to borrelia burgdorferi- and mine was positive by CDC reporting standards. B. burgdorferi is the bacteria responsible for Lyme disease. I was expecting to maybe test positive for "Master's" disease- the midwest variant. Well, not really expecting it- since I wasn't terribly ill- but I figured that was the worst it could be.

I was wrong.

I have no idea where I might have picked _ b. burgdorferi_ up. My guess is that it's here in Missouri, now, and underreported because no one is looking for it.


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## lurnin2farm (Jun 10, 2012)

Your symptoms do seems mild so you are fortunate for that. At least you know and are getting treated for it. I only knew 1 person in Ct who got it and they had a rough time of it. This was years ago though and I'm not sure they even had a treatment for it then.


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## Maria (Apr 24, 2003)

The only reason I insisted on getting tested for it was because I'd been reading about Lyme disease and all the literature says what a close relative it is to syphillis. This, of course, begs the question--- what if it's sexually transmitted?

What if my husband's treatment failed 8 years ago because he promptly caught it back from me? 

I'm not devastated by it (at least not until the holes in my brain start making me crazy) but my husband's immune system can NOT handle this disease. I could not take the risk that I'm a sort of Typhoid Mary as far as he's concerned. So, as soon as I could this year, I got tested and began treatment. 

My boss has a PhD in infectious diseases. He kept telling me there was absolutely no way I could have Lyme. I simply wasn't sick enough. I told him my theory and explained that I couldn't take the chance that I was carrying the disease. For the next 3 weeks while waiting on test results, I combed the internet- looking for evidence that Lyme might be sexually transmitted.

There are a few studies out there that point that way:
RECOVERY OF LYME SPIROCHETES BY PCR IN SEMEN SAMPLES OF PREVIOUSLY DIAGNOSED LYME DISEASE PATIENTS
'Lyme disease': ancient engine of an unrecogn... [Med Hypotheses. 2003] - PubMed - NCBI
CiteULike: Potential impact of diseases transmissible by sperm on the establishment of Iberian ibex (Capra pyrenaica) genome resource banks


As far as I'm concerned, Lyme is sexually transmitted. The bacteria like to hang out in weird places in thick, viscious fluids. Why _wouldn't _ they be sexually transmitted???

And today, I had the depressing realization that a lot of other bodily fluids and tissues could be infectious, too. And that since deer and cattle can both have Lyme disease without any obvious symptoms, then from now on we are going to have to be very careful anytime we butcher an animal.

Every bodily fluid could hold a dose of spirochetes in active or cyst form.  We're going to have to glove up and maybe even wear masks the next time we butcher. Argggghhhh. And this affects cooking, too. No more med-rare steaks.  No more raw milk. 

Depressing.


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## HermitJohn (May 10, 2002)

Hey I suppose its possible it could be sexually transmitted, the lyme spirochetes are very simular to the syphilus spirochetes.

But if I have it, suspect its the old fashion tick inspired version, been a hermit for a LONG time. And here in Ozarks, those commercials saying you should run to doc for every tic bite are just downright funny. I'd be camped out in doctors office all summer every day. And have to be a multi-bazillionaire. For twenty years now its just matter of pulling off any tick you feel, many of them are in places I couldnt see if I wanted without having a room full of mirrors. So I have no notion if there is a rash or not. I just wish everything connected with diagnosing it wasnt so dang expensive unless you have the Cadillac coverage. I've fought the symptoms for well over a year now. Lot of symptoms are from internal inflammation I think. Ginger/turmeric has made life lot more comfortable this summer. Get to cooler weather where I aint too dizzy to drive in daytime heat, suppose I gotta pay the thieves their blood money and try the tests. The doxycycline last September sure didnt do anything. Tried it as it was far cheaper than the test.


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## Maria (Apr 24, 2003)

I was raised down near Branson, so I hear you on the tick bites. On the questionnaire I filled out for our Lyme doctor, I put my estimate of previous number of tick bites as a "jillion". That got a chuckle.

The doctor we are seeing doesn't take insurance, so we had to submit our claims to insurance directly. My husband got a little money back from his, but my insurance is practically useless for an out of network doctor. it makes me angry... but what can you do? At least we had money saved up to pay the doctor directly. And the insurance does help on the cost of the prescribed meds.

Once you've had it a while, though, borreliosis is hard to treat. The bacteria can make cysts and simply go dormant while most antibiotics are in your body. We are going to be on oral antibiotics for months. The first two antibiotics are for the active forms, and the third one is a cyst buster. After that comes one meant for protozoa in case there's a babesia co-infection. And after that I get to take one that is supposed to take care of any bartonella that might have survived all the other stuff. I'm not sure what happens after that...

_And _ we are taking antibiotic eyedrops to try and clear the floaters in our eyes. Apparently normal people don't have them! Who'd have thunk it? 

The doc found several hormone deficiencies in my husband and he felt much better within days of those being treated. I'm a month and a half behind my husband in treatment- and when I saw how much he perked up when he went on the thyroid hormone pills, I started the ball rolling to get my thyroid tested because I thought I was going to have to wait until October to see the Lyme doc. (I got seen sooner because I live close and could fill a cancelled appointment with almost no notice. Most of this doc's patients are out of towners.)

The first doctor I went to didn't do the right tests and said I was normal- so I went to another one in an endocrinology department and he did the right tests, but wouldn't diagnose me as hypothyroid on only one test result- so I twisted his arm a little and he agreed to order me tested again and the numbers were worse the next time. So after nearly a month of messing about with it, I finally got to start with the thyroid meds. It helped a LOT. My mind is awake again, after nearly a decade of steadily increasing brain fog.

I started reading a lot of Lyme and other health related books, and it looks like there is some kind of correlation between hypothyroidism and Lyme disease. One book I read mentioned that people who are hypothyroid tend to get infections more easily. Maybe that's what's going on. I don't know, but our doc sure knew what to look for.

I was suspicious at first- maybe our doctor is simply treating hypothyroid patients who think they have Lyme disease (since he didn't even test my husband) - but the fact that my Lyme test came back so very, very positive kind of disproves that theory. 

We are on our way to feeling better. We even spent most of yesterday out in the heat fixing fence. It's been ages since we could do that. It was cooler yesterday, so I don't think I can say my heat intolerance is completely gone- but I'm getting better.


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## beccachow (Nov 8, 2008)

Too much to talk about here; PM me if you need guidance or help. I've been suffering the non-existent disease for about 6 years now. It has affected my heart, my memory, my joints, my cognitive functions and just about everything else you can imagine even after two solid months of twice daily antibiotics via implanted picc line.

Crud, I just relaized I was supposed to get back to someone about Lyme like three weeks ago. See??


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## Maria (Apr 24, 2003)

I'm curious- did your doctor(s) check for thyroid issues? My mental symptoms *almost* totally resolved with thyroid treatment- now the only time I get brain fog is when I'm herxing. And my husband is the same way.

I've been gobbling Lyme and Hypothyroid books for the past 8 weeks or so. The one our Lyme doc recommended was , "Hypothyroidism Type 2" by Mark Starr. That one was really good, but the best I've read so far is "The Women's Guide To Thyroid Health" by Kathryn Simpson.


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## beccachow (Nov 8, 2008)

I ended up with a dual diagnosis when it was all said and done; two invisible diseases that don't exist. Chronic late stage decimated lyme and fibromyalgia. So gald these diseases don't exist, makes me feel better to know I am not sick.

I wish it was something as simple as Thyroid, but they checked me for that 6 ways to Sunday and no go. 

Herxing stinks. Sneaky sneaky process.


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## Maria (Apr 24, 2003)

No kidding! I feel worse when herxing than I ever did while undiagnosed and untreated.

On the other hand, the two times I've had to stop antibiotics to let the herx fade, within 2 days I started running a serious fever and started having all the Lyme symptoms happening at once. It's become obvious I cannot stop antibiotics right now. The antibiotics have torn down my immune system to where I can't cope as well against the borrelia anymore.

I'm going to see a naturopath this week to see what herbal stuff might complement the Lyme treatment. I tried starting a few things that I thought might help, but they just caused diarrhea. I'm tired of experimenting on myself and need some more educated advice. Our LLMD (lyme literate doc) says he knows nothing about herbal medicine- so maybe the naturopath can help. His office person said he's got several Lyme patients. It's worth a shot.


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