posted
Hello. I originally posted this last night and was told that it would be easier for many readers if the paragraphs were shorter.
so...here it is, in a shorter paragrahped, more (hopefully) readable form! And sorry if the orig. post was hard to read.
Over the last few years, I have been troubled by certain symptoms that, having come here because of my daughter's Lyme disease, I have come to learn could be associaited themselves with Lyme.
They include...a sudden weight loss of over 20 pounds, neurally mediated hypotension (positive tilt table test), daytime exhaustion, strange bruising on areas like the inner arm surface, low platelets, ptosis, shingles, can't shake resp infections.
I am beginning to get paranoid that I may have Lyme disease..especially since my Sx began around the same time my daughter's did.
I have suspected in the back of my mind that I, too, may have it...but have never really given it credence...tonight, for some reason, it has gotten harder to shake the fear and I can't even imagine if we both had it at the same time...
On the other hand, unlike her, I have been able to push through and work, run my house, raise three kids, etc...
I know I probably sound like one of those med students who thinks he has every disease he studies...but frankly, when I went to the doctor, none of the symptoms were ever addreessed as part of a larger disease process...just treated on thier own...i.e., florinef for the NMH, bed rest for the shingles, etc...my PMD way back then did include a Lyme test (not sure which one) and when it came back positive,
I was told "it could be any number of disorders" and I left it at that...Now I want to call for the records and see what exactly it was that came back positive...could it be that I, like my daughter, have been walking aorund with Lyme all these years...
this is feeling really scary!!
Posts: 217 | From New Jersey | Registered: Apr 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I am sorry it is feeling scary.
Yes, you could have Lyme. Lyme and other TBDs are not the rare illnesses the CDC makes them out to be...
My daughter & I both got sick. She is in full remission. Often families get sick not just because of shared geography but because of shared genetics. There are genetic tissue types more vulnerable to Lyme infection than others. I worry about my younger daughter because of it, but so far she is great. So having a family member with Lyme raises the index of suspicion for you already-
If you don't have Lyme then having examined the possibility you will have even more compassion for what your daughter and other Lymed people go through-
The good thing is- if you do have Lyme, you *don't* have to have fibromyalgia, chronic fatigue syndrome or a host of other misdiagnoses you could have ended up with!!!!!!!!!!!!!! And by treating it you will get better quality of life if you are like everyone I know...
Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
I don't think you are being paranoid. You are just connecting the pieces of this mystery.
It wasn't until my son was diagnosed with lyme that I started connecting the varied symptoms that disrupted the quality of my husband's life for over 13 years. When we saw our first llmd and my son answered the series of questions asked - I commented my hubby would have more "yes" answers than my son.
My hubby still hasn't been treated (he says he must work & can not afford to be worse)......and his symptoms continue to cascade (now continual sinus problems, reflux, & hip problems.)
I would speak to your daughter's llmd and trust this physician to investigate and come up with the right protocol for you so new symptoms do not become part of your life/daily functioning/acceptance.
I remember when my other son and I were tested thru Igenex - our PCP's response was that these must be false positive.
So many folks walking about sick because they failed to pass the two tiered testing that their PCP's order.......ignorant that they have Bb and co-infections.
This is not your imagination!
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
Definitely get the results of the lyme test. It was probably an ELISA. It would be completely negligent for a doctor to not follow-up on a positive test with a western blot.
Posts: 340 | From Ohio | Registered: Oct 2005
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butchieboo
Unregistered
posted
Well yes,
You could be the reason your daughter has lyme....
also you and the rest of your family should be tested thru the labs suggested here because of proximity to a lyme positive person....
posted
elle, you got great advise from above. no you are NOT paranoid. yes, you edited your paragraphs well ... easy to read. god bless you elle and what you are going thru.
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posted
Thank you for the shorter paragraphs. BettyG is nicer than me ... she tells people to shorten them ... I just skip the post entirely!
If you had a positive Lyme test, I would DEFINATELY get the Western Blot done. I would go straight to a LLMD. No sense in continuing to mess around with doctors who don't know anything about Lyme.
My first LLMD appt. was wonderful. Just to sit there with a doctor who acknowledged that I was ill was a real treat. No psychosomatic accusations!!
Don't be scared to find out it's Lyme ... be more scared of not finding out ... you can treat it if you know what it is.
It's not unusual for family members to come down with it at the same time.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Thanks, everyone, for the support...as I sit here, typing, eye twitching, bp crashing when I stand up, knee throbbing and realize what I just tune out most of the time...I am sure that I will schedule an appt with my daughter's LLMD once I've gotten her started....just have to raise the bucks...and then off I go.
Elle
Posts: 217 | From New Jersey | Registered: Apr 2007
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bettyg
Unregistered
posted
elle, we completely understand about the $$$. last year my out of pocket for 3 visits for appts., $1000 supplements for 1 month, and complete body labs NOT covered by my insurance totaled $4300 !!!
elle, whatever you have to do, MAKE THE APPT. NOW, and then find a source for the money: rich parents, aunt/uncle, grandparents, a loan, etc.
the longer you wait the spirochetes invade MORE OF YOUR BODY; best to stop them dead in their tracks before they keep multiplying on us all.
perhaps a FUNDRAISER by your community! i'm from a small community and we had them all the time: chili suppers, silent auctions, car washes, etc.
my best to you ok! YOU CAN DO IT! may god provide that avenue you are looking for.
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I know Ill find the money somehow...I would never NOT get treatment because of money...
just galls me that my health insurance is effectively useless because no LLMD could ever work withing the guidelines of Blue Cross and AETNA...which are the plans my family has.
One tact I am exploring is finding a new Primary doc...one who will work with the LLMD as far as ordering tests, abx.in which case at least some of the services will be covered.
Wish I had wealthy family members...don't, but the fund raiser idea is interesting...just have to explore it more.
Thanks for your advice!
Elle
Posts: 217 | From New Jersey | Registered: Apr 2007
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