A Wee bit of paranoia/the canary theory

Discussion in 'Lyme Disease Archives' started by Missizzy, Nov 3, 2007.

  1. Missizzy

    Missizzy New Member

    The folks over on the ME/CFS Message Boards encouraged me to post this question to you guys. I would love some input. My profile can be read on that board also.

    I posted yesterday concerning adrenaline and crisis and received two interesting replys. I've ordered the book by Dr. Caroline Leaf (ebay) and already called the doctor about a cortisol test. Will someone tell me why the Mayo Clinic would not have done that?

    Anyway, the recent crisis I referred to was the birth and death of a precious granddaughter. Riley Grace was born with serious anomolies and defects (of course to me, she was perfect). An autopsy was done and we are awaiting results. However, the pediatrician believes that Riley Grace had a syndrome called Beckwith-Wiedemann. This is a syndrome which prenatally causes an "overgrowth of all cells".

    This brings me to my paranoia. If anyone has read my profile, you know that I have 3 children by birth and 10 by adoption. We have lived in the hills above Ashland, OR for 14 years. We also have always had numerous rescued dogs (unrelated to each other). In just the last six years, we have been hit by multiple sclerosis (birthchild), Bipolar 1 (birthchild), bipolar 2 (birthchild and adopted child), epilepsy (adopted child and young dog), autism (bio grandchild), pseudo-obstruction disease (adopted child), thrombocytopenia (young dog), Cushings Disease (2 young dogs), and diabetes (young dog), intermittent paralysis (2 young dogs), and now a devastating chromosomal disorder (bio granddaughter).

    All of these illnesses were sudden onset and occurred when these people or animals lived in our home or visited daily. These are not illnesses which "run in our family" or which have showed up in our adopted children's birth families. We've even checked with many of our dogs' known siblings placed in other homes and they are not sick.

    Our former police chief lives 200 ft. from our home and retired last year with symptoms almost exactly like mine. He is a formerly strong and athletic man (age 54) who is now nearly bedbound. A former hospital board president (also 50ish)and competitive rower lives 750 ft. away and had sudden onset pseudo-obstructive disease and CFS 2 years ago. She is also bedbound. We've all been to the Mayo Clinic with no resulting help whatsoever--just bills. We know from County Health that two blocks away there is a cluster of a rare brain cancer with five families affected in a single block. Our City Council has taken an interest in these health issues--even running soil and water tests--to no avail. People are not anxious to raise a red flag because the homes in this area are in an expensive historical district and valued between $700,000-$3,000,000. Heavens, we can't have property values go down!!

    Our family has taken the action of building a new home across town to which we are moving this week. We are very worried about possible health problems for any family buying our current home but the real estate agents just laugh off our concerns. We've been hesitant to call a town health meeting as we're worried that anyone with even "normal" illness would over-react.

    Ashland is a unique community--with year round Shakespeare theater, lots of tourism, extremely liberal politics, and an especially strong positions on health and ecological issues. We are right off I-5 in the Siskiyou Mts. This is a town filled with Priuses, alternative health practitioners, eco-action, organic food, and little pestiside use. Because we live up on a hill overlooking the town, city officials have told us it is unlikely that there could have been toxic activities here historically (blacksmithing, etc.).

    I am a person who likes to find solutions and get things done. I spent my career as a child advocate working with state and federal agencies and "kicking butt". But I am completely stymied here besides being desperately sick. Has anyone else run into this sort of thing in their communities? What have you done? Does anything I've mentioned ring any bells?

    Can this all be bad luck or coincidence or is something really wrong here? Could this be a relatively normal amount of illness to expect in any given two/three block area? If you've made it this far in this treatise, thank you. I just rail against my lost health and vibrancy and have horrible sadness about those becoming sick around me. I want answers!!

    Part 2

    Thank you for taking the time to give me all the info on Lyme's. I have to admit that I've really discounted it by now. Everything I read pointed at more joint pain and flu like symptoms, which I've never had. I'll check my records and see what the three Lyme tests were that I was given. The neuro spaced them out over two years.

    What really got my attention were your comments about Texas. Oh my gosh, ticks were awful in Central Texas. I even had an experience where I stepped onto a seed tick bed and had hundreds crawling up my legs. I remember my husband hustling me into the shower and scrubbing them off as they climbed higher and higher. We thought we got them all but I always worried that a couple little guys made it all the way to my vagina. It was really scary. We used to check our kids at bath-time and yank them out. This was so "icky" for me and my husband as we had grown up at the beach in California and had no experience with them. Don't get me started on the chiggers, scorpions, or Buick-sized coackroaches!!

    I see that you mentioned that some people can just show neuro problems--that's intriguing and I will check it out. I still wonder, though, if a person can be healthy for years (we left Texas in 1986) and then have an extremely sudden onset of neuro problems like I did. I will spend today researching that.

    I also noted that you mentioned breastfeeding. Well, I nursed all three of my sons by birth for 1-2 years each. And you know what? They were all perfectly healthy (even competition cyclists) until they hit their early twenties. One developed MS and all three have bipolar disease (one has type 1 and two have the milder type 2) which does not run in either of our families. One of their daughters has bipolar and autism. They are amazing men, staying on meds, all business owners, and living their lives here in Ashland--not giving up.

    As interesting and worrisome as all this is, it still wouldn't explain my neighbors, adopted children (who never lived in Texas), and our dogs. It's so difficult to know what issues are inter-related and which are simply sad coincidences.

    But, I assure you that I will be spending the day carefully going through all the links you provided. Once again, thank you so much for taking the time to care. That means a lot to me.

    Once again, thanks for any input at all,

    Missizzy
  2. victoria

    victoria New Member

    But altho it's not proven, it is strongly suspected that it can be transferred thru saliva, sperm, and breast milk. It's also been found in spinal fluid and been implicated in MS, altho it's hard to find anywhere with certainty, actually. It's also suspected that mosquitos can transfer it.

    It will be interesting to see if you had a Western Blot done by IGenex. Altho even that is only 70% reliable, it is considered the best test to get. And the test results should be looked at by a LLMD, certain bands are more sensitive. Even the CDC says regardless of whether ANY bands show up, or all 5 they use for tracking and surveillance purposes, it's the final clinical picture that counts. A month's trial of abx would tell a lot.

    Lyme as I'm sure you know has been called the "Greatest Masquerader" as it is a spirochete bacteria, like syphilis, and can go any/everywhere in the body, including the brain. Thus some get neuro symptoms only, or before later getting physical symptoms ... the range of symptoms is huge and quite diverse which is why it's hard to recognize, and of course no one gets every symptom. And it's more the rule than exception to get co-infections, altho the tests for them are much less reliable than the WB.

    Typically the 'regular' CBC & etc. blood tests show up normal, as they did for our son. However, he showed positive 2X within 6 months on the WB test with all of the CDC's 5 "tracking' bands, which is rare; he never had a rash.

    For him it was anxiety/depression and fatigue that showed up first' then the pain, peripheral neuropathies, etc. The first month of oral abx, he was totally bedridden. 2.5 years later, most of his pain has receded, but neuro problems persist. I am convinced had we not caught it when we did, he'd be at best bed-ridden right now.

    There was also a FSU star quarterback in summer of 2005 who was found wandering down the street disheveled and mumbling he was God... spent a month in the hospital getting checked, they could find nothing. Finally a family friend of theirs suggested Lyme, and he showed positive; and he responded to IV abx treatment, was able to go back to school altho not play football.

    While my DH and I have not been tested, we figure we have it. I have been responding to the Marshall Protocol with herxes that are just like my son's... my husband had/has atypical Bell's Palsy about 17 years ago, which he still has, plus "reflex sympathetic dystrophy" and some other problems have been exacerbated over past 17 years. He is going to try a Rife Machine and is also doing the Salt/C alternative routine. He is on disability; I would be if I could be. Our son is in the appeals process of getting SSI, he's 20.

    Lastly our daughter had Rocky Mtn Spotted Fever at 9, also considered 'rare'... could she have later been also infected with Lyme? very possibly... time will tell. It can lay dormant for a long time.

    I'm sure others will have lots to add... there is so much to learn about this insidious nasty critter and its buddies.

    I'd advise reading all you can, educate yourself as much as possible -
    check the research library here for it in the CF/FM library...
    read the other posts here...
    go to ilads.org,
    also there's a site (lyme flash net) that is quite good;
    the Canadian Lyme organization also has a lot of good information too...
    and there are other organizations as well.

    all the best,
    Victoria

    PS: it would also be wise to investigate other "stealth bacteria" that can go intracellularly to hide, like mycoplasma, and chlamydia pneumonia (cpnhelp.org) to name two. Thankfully the abx used for Lyme and it's co-infections often treat other stealth bacteria too.



    [This Message was Edited on 11/03/2007]