posted
Hello everyone, newbie here. I think this is a long shot and that I probably don't have lyme, but wanted to run the possibility by all of you.
Here's the story. For most of this year I've had chronic and somewhat debilitating fatigue, along with some neurological symptoms (weak limbs, brain fog, clumsy hands, occasional slurred speech.) This started very suddenly, but since starting has been highly variable. My energy level fluctuates on a day-to-day and often hour-to-hour basis. I have had no real pain (in joints or elsewhere) to speak of.
I've been diagnosed with: * hypothyroid (but not very severe - original TSH of 6.5) * B-12 deficiency * adrenal fatigue * low testosterone
but none of my doctors really think that these alone can explain how I've been feeling. Best guess so far is some sort of autoimmune syndrome, but haven't gotten any further than that. Symptoms continue despite treatment for all of the above (although I have seen some improvement.)
The reason I even think about lyme is that starting about 10 years ago (was in my mid 20's), I had recurring episodes of a heart arrythmia that was later diagnosed as type 2 A/V block (Wenkebach). It would come on out of the blue, very noticeable, and beat in that pattern for 1-4 hours (skipping every 3rd or 4th beat.) Episodes were pretty frequent at first, later becoming much less so (one every several months). I haven't had an episode in probably 6 years or so now. I've heard that A/V block can be caused by lyme.
IIRC, my cardiologist at the time did a test for lyme, and it came back neg. But I don't know which test he ran (I think it was only one). So he wrote off the problem as being probably congenital. But then it faded.
Another circumstance is that right around that same time (maybe the same year) we had a minor tick infestation in our house (this was in Phoenix AZ) where ticks brought in on dogs ended up in the carpet. I don't know if these were the right kind of ticks for lyme. And I never noticed being bitten, never saw a tick on me or got a noticeable rash. But it wouldn't surprise me too much if I had been bitten.
Another thing I just remembered is that I went to a doctor for a routine checkup before the arrythmia started, and he said my white blood cell count was elevated, as though I had a systemic infection, but I hadn't really been sick.
I'm tempted to try to connect these dots. But in order for it to be lyme, we'd have to be talking about an infection that: * was acquired at least 10 yrs ago * in Arizona (or South America, where I travelled just before that) * had no severe immediate symptoms (that I can recall) * later caused recurring intermittent A/V heart block, which lasted for several years * then was dormant for several years, during which time I felt basically healthy * this year caused chronic fatigue, either directly or via autoimmune reaction * never caused joint pain
Does this seem at all possible to y'all? From what I've read this doesn't seem the usual presentation of lyme, but it also seems unusual presentations are out there.
Thanks much!
edit: one more thing. My white count this year was normal, which is why my doctors have not been thinking infection for my current symptoms.
Posts: 1 | From Bellingham WA | Registered: Aug 2008
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adamm
Unregistered
posted
Not only possible, but very likely--up for others.
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I in all probability got Lyme in OK over 40 years ago. I know it wasn't on the east coast, because I had never been here at that point!
I had very mild symptoms in the first few years that I only now recognize as part of Lyme as I look back and try to pinpoint when it happened.
We were always pulling ticks off ourselves, and our dogs. I went camping, hiking, fishing, lake swimming, etc. Lived outside in summers.
So it is a possibility for you to have Lyme. You were probably tested with an ELISA test, which is about 35% accurate.
Welcome to Lymenet. Read a lot and when you are ready to look for a Lyme Literate MD (LLMD) go to the Seeking a Doctor Forum to find one.
That's the only way you will really have a chance of regaining your health. You probably have co-infections, too. Ticks just give us everything they are carrying. Not so nice of them, is it?
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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bettyg
Unregistered
posted
SCHOLTZY, outstanding, detailed history for us all!! boy, it sure looks like it to me also..
look for my symptoms lists for lyme and co-infections using my table of contents in the BOTTOM link or in my signature line area.
circle all that apply to you.
having ticks in carpet .. looks pretty inevitable to me; you sure had opportunities!
i never saw a tick, none embedded, nor did i have a bulls-eye rash 38.5 yrs. ago!! 34 yrs. misdiagnosed by 40-50 drs.
get a western blot igm and igg blood test drawn and sent to IGENEX, CALIF. get all the info from my detailed post on igenex in my newbie package ok!!
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Get the right tests through Igenex to investigate further. Joint involvement for me has been minor and sporadic. My bigger symptoms are similar to the ones you mentioned.
I am also hypothyroid and have been shown to have some adrenal fatigue. My T has been low normal. MRI normal. Echocardiogram normal.
Lyme disrupts the endocrine system. Others have had low T caused by lyme too. However, unless you treat the lyme, hormone replacement will simply mask symptoms to some degree.
I was a good athlete, not prone to sickness, and lyme really screwed up my entire well-being.
Go the extra step and get it checked out.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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NanaDubo
Frequent Contributor (1K+ posts)
Member # 14794
posted
I would definitely get tested through Igenex as mentioned.
My lyme was dormant for about 8 years. A very stressful incident and possible new bite made it go crazy. Symptoms similar to yours.
I believe it can hide away for many years, doing it's nasty work and then something happens, different for everyone, and then BAM!
Posts: 1129 | From Maine | Registered: Feb 2008
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Alv
Unregistered
posted
You probably got reinfected.YES I had lyme for 30 years.
I had been reinfeced and my symtoms increased every time I would getr reinfected.
BUT BLO/MUCO the mystery bug send me to the death bad.My joint problems started propably 20 years after.But the fatigue and brain fog( head neurolyme ) started since I was on 20ties.Another reinfection that was clear ( my knee swollen) was reinfected with lyme...brought up some foot pain and neck pain .
Than reinfected again and severe body joint pain.So after 30 years with 7 coinfections I was having all the symtoms of LYME associated with sever joint paint.,But WHO would not.LAST BITE almost sent me to the death sentence.
MY son was the same.HAd it and now and than would say somhting is in my heart.Than would be fine.Than reinfected again and compleined about his foot pain and beeing tired in the morning.AGAIN bit and had HIGH fever and had HIGH WBC.That was the time the pediatrition said you have mono.
IT was just lyme activated.HIS COINFECTIONS as present speeded up the lyme .I had found out when he ended up with lession on his head.NONE of the doctors had a clue.
DO an IGENEX test and see a LLMD ( lyme literate doctor) .Ignore and spare your time with other INFECTIONIST doctor .
Even if you might have negative IGENEX the bands will show if they are lyme related .TREAT yourself asap.Yu are lucky to found it before you became incapacitated and end up bedridden.
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otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy. ![[Frown]](frown.gif)
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