Studying Twins

[LymeEnigma]

Having my twin sister in town all last week, seeing the similarities and differences between our various symptoms, got me thinking: I wonder if there have ever been any serious twin studies performed on "fibromyalgia," Lyme, and/or similar conditions. I know that twin studies have proven very telling in other areas of research; I'm sure they would be just as telling in Lyme and Lyme-like illnesses.

Sis and I have both had a number of physical issues throughout our lives. Similarities in our childhood include:

• IC-like urinary tract issues since early childhood
  
• severe childhood migraines
  
• joint pain and swelling
  
• OCD
  

On top of this, as a child I also had:

• one constantly swollen lymph node
  
• absence seizures
  
• IBS and chronic constipation
  

Twin sis had more profound joint pain (either that or she just didn't have my pain tolerance).

As adults we have each been bitten by at least one tick that we know of. Hers was many years before mine, and it was a dog tick that appeared to have no effect on her health. Mine was a black-legged tick just a few years ago, which resulted in an EM within three days of the bite, and then progressed, by the book, to early, disseminated, and then late Lyme.

We both had titers performed through Quest diagnostics. Mine came back at 1.16; hers at .90. She never had a Western blot performed, but I sure wish I had the results to compare to mine. The differences and similarities between bands would likely be very interesting to look at. I have to wonder: might my titer have come back slightly higher than hers because of my tick bite ... and might we have both suffered from something Lyme-like that we were possibly born with, that might just be similar enough to Bb to put a Lyme titer right on the fence (such as sis's .90)?

Since my six months of antibiotic treatment I would say that sis and I are once again on par, symptom-wise.

We both currently suffer from:

• joint pain and swelling
  
• cyclic vomiting and migraines
  
• various intermittent aches and nerve pains
  
• OCD and anxiety issues
  

She does not seem to get the dermatological involvement I get.

I would love to know just what, exactly, is causing both of our very similar symptoms. How much of this is the result of foreign proteins? How much does autoimmune response play a role? What would an analysis, comparing and contrasting our blood, brain scans, etc. potentially reveal?

*edited to add: twin sis also had a hurthle cell tumor in her thyroid, which she had to have removed ... not sure if it holds any relevance to this particular subject.

[itsybitsyone]

You had band 23 like I did Except I think mine showed up on IGM last time. Band 23 is OSP C, specific to lyme something like 95%.

ELISA can by raised by rhumetological problems, too, from what I understand....so if you all have like lupus or ra, you could have a equivicol titer like her's I think.

In any case, any number of autoimmune diseases or viruses, I am sure, could be part of your issue.

Do they have culture the urine for bacteria for you?

[LymeEnigma]

Years ago, when I was still a Kaiser patient in California, one doctor noted that "there looked like signs of infection," in my urine, but they "couldn't find the infection." White blood cells, maybe? I remember him mentioning something about my urine being cloudy, but he offered no explanation and no treatment options. That was back before I gave up on looking for the cause to my life-long urinary retention problem....

As far as other tests go, sis got diagnosed with rheumatoid before fibro; her tests were also inconclusive there, too, so the rheumy finally settled on the fibro diagnosis. Neither of us has ever had a particularly high SED rate (I think my highest has been 7), although I have tested positive on a couple of lupus tests.

What really keeps bringing me back to this is the similarity between my symptoms pre-, during, and post-Lyme. I am fairly certain that my tick bite was, indeed, dirty, and that I specifically contracted Lyme at that time. Given my blood work, the rash, and the textbook symptoms, I really can't think of any other way of looking at it. I am not so sure sis has Lyme, specifically, but I think it would be safe to assume that her rheumatological and neurological symptoms are, and have been, caused by a similar illness. I'm still leaning towards something spirochetal, if it isn't a good mimic (such as brucellosis, which it known to be transmitted easily from mother to child) or simply the result of some environmental trigger. That's why I think a whole slew of blood tests between the two of us would be telling.

One thing I was thinking about just last night was the fact that my mom fed all of us crap growing up ... no veggie on the table every night, no fruits on a regular basis. If it came out of a box, Mom cooked it, and that was about it.... Might we have both been healthier, on more levels than one, had we been given a balanced diet as children? Hard to say, but it very well could have also been a contributing factor.

[enochroot]

I would not suspect childhood diet, as childeren are resilient, and the effects of
"bad diet" really don't come on strong till the late 20's health-wise.
I must stress this based on my own observations and experience, of course
your mileage may vary!

You may well have had childhood infections with things they just don't flag
easily, and been left with residual chronic issues - I am convinced that
this is VERY possible for ANYbody in our system of medicine, after this past
year, and seeing that what is not flagged and tagged easily by doc$
is written off and dismissed.

[LymeEnigma]

Those are good points, enoch.

Back to the twin studies: I really think that a few studies on twins, comparing blood tests and symptoms, would explain quite a bit. I know that researchers have learned a lot about various other diseases (granted, many of them are on genetics) by studying twins. Think about it: two people with virtually identical genes, who grew up in the same area, who may or may not have identical manifestations....

I know of another set of Lymie twins from HealingWell, and there have got to be tons more out there. I think I might just come up with a hypothetical study....