I had an attached tick 4 years ago. Did a cursory search online for Lyme disease info so I would know what to look for....bullseye rash, then a few weeks later joint pain. Ok.
Watched the rash for a few days...no bullseye opened up. Never thought a thing about it after that.
2 springs ago ('05) I decided I must just be getting old (at 26) and developing arthritis since my knees ached and creaked and crackled so much. Did a little research online, not rheumatoid, since no inflammation, must be osteoarthritis.
I did think it strange that my knees had degenerated so badly since I am a SAHM, never did any athletics, etc. Strange too that both knees would have problems, but not always at the same times. I noticed Lyme would show up in a google on 'knee' or 'joint' pain, but I always dismissed that.
That summer (or poss. '06, I can't remember for sure which year it was, I think it was '05...) I had WEIRD stuff goin on.
My blood felt like it was pudding. My heart felt slow and sluggish, and it would seem to pound HARD to get the milkshake thick blood through.
I could feel it draining out of my arms in a major way if I raised my arms for even a second (like on the back of a chair, not over my head), and my legs and arms always felt heavy.
It really started freakin me out after about 2 wks. I was worried about a blood clot since it sometimes seemed worse on one side, so I was trying to keep my arms and legs moving 100% of the time (thinking this would keep the blood from coagulating in my veins!).
I was scared to even look online for any ideas, I was afraid what I might find. I finally searched up info on blood clots and couldn't find anything that seemed 'right', so figured I'd just deal with it.
It must be the heat and swelling because of that, I figured. Then one night my heart decided to switch gears and it sped WAY up. I panicked (after the heart started speeding up, not before) and had hubby take me to the ER.
At that particular moment I was afraid NOT to go, though any other time I wasn't about to go!
The dr was handing out 'anxiety attack' diagnoses to everyone that night. I heard him give at least one other gal one as well and I think I remember her talking about another gal that had been in my bed previously.
That would be 3 in a row...he was going off shift. Anyway. I asked him about blood clots, told him about the pudding blood and all that.
He did an EKG and some sort of bloodwork (though what I don't know) to pacify me and said nothing is wrong, here is a script for anti-anxiety meds.
I never used them, cause I KNEW it was NOT a stinkin panic attack. I've *had* those before...this was not that!
Well, the achy knees were on again off again, and finally the whole pudding blood thing went away for the most part, too. Then came the tingles. Body parts would fall asleep awfully quick...a lot. Poor circulation, I'm sure.
In the spring of '05 also (I forgot this...) I went to the optometrist to get new glasses. Hadn't been since pg with my oldest (back in '97), so it was overdue.
I was hopng new glasses would get rid of the FREQUENT headaches and eye pain. I also splurged on myself and got prescription sunglasses for the first time in my life since I couldn't even open my eyes a slit outside anymore and that made drivin the kids back and forth to dr visits, etc a bit difficult.
The new script did help some, but then sometime after the whole non-panic attack ER thing I realized my vision was blurring some around the edges of things again. The headaches had never quit completely completely, so that wasn't new, but I did *not* expect my glasses prescription to be 'getting old' again so soon.
The last pair went nearly 7 yr before they were obviously not right. I started worrying/wondering maybe I was going progressively/slowly blind.
Then I started walking to church and I noticed something else that worried me...I was losing my sense of balance...like big time. Most days I could not look up from my feet without veering off to one side and stumbling.
Absolutely could NOT look UP and walk, I'd fall plumb over. I decided it was time to face facts, something was WRONG with me. I hit the internet researching again and started with Parkinson's because that was something I'd wondered about for years because of the way my hands would shake and twitch sometimes.
I don't even remember what all I looked up now and/or found, but I do know that mostly the things I was looking into were the knee pain, the balance/eye things, the tingles, the heart skipping beats or doing extra ones, and just plumb being worn OUT, exhausted all the time.
Multiple Sclerosis kept popping up so I poked into it some. Bits of it made sense, but other bits didn't. Something else that kept popping up too, was Lyme. But that couldn't be it, because Lyme has a bullseye rash, so never poked into it much.
I'd start feeling better somewhat and so would give up the research.
Fall of '06 I started having major gut 'issues', far worse than the odd bloating after ice cream. Irritable Bowel seemed the most likely after my exhaustive research on *that*.
My dad had *just* been dx'ed with colon cancer after emerg. surgery, so I definently researched this stuff.
Spring of '07 I got scared again when I had a swollen lymph node under my jaw. My dad having been the cancer route so recently I knew a little about lymph nodes spreading cancer, etc.
I was a smoker and FREAKED that the swollen gland, node, whatever was the beginning of mouth cancer. I researched THAT and found it to be unlikely. Especially since the sucker went away after switching brands of smokes.
I ended up being freed of cigarettes in April (thank you, Jesus!).
May or so, I started feeling worse and worse and worse. Exhausted, felt like my mind (not my head, my MIND) was going to explode from all the spinning around in confusion and circles, from all the time going "UGG I can NOT focus on anything or figure out what I'm supposed to be thinking about" etc.
My knees were aching or downright hurting off and on. Sometimes my arms would ache too. I started pluggin in symptoms again and MS, Fibro, CFS, and Lyme kept showing up.
FINE! I'll look at Lyme, though I don't know why....
You can probably guess. After all, I found this site. =) I'm learning lots. I have learned enough that I suspect I have had Lyme since childhood, NOT since the attached tick back a few years ago.
I've learned enough I highly suspect my mother has it as well. Just this summer she went through testing for MS. Her thyroid levels were also off, she is supposed to go back in about now for a re-check of that.
She does the tingles, numbness, blacking out (or nearly), headaches, ahcys, sleeping too much or too little, kidney probs, stabbing, shooting pains in her head (she figures she will pop a blood vessel in her head someday), etc. So do I.
A lot of the things I see on the Lyme symptoms list I have and have had them or been dealing with them off and on at least ever since I can remember. Others started around jr high or high school. Still others are more recent.
A lot are things Mom and I have always just figured were "our kind of normal".
I think my kids may be infected as well. Different symptoms in each, but all their multiple medical issues I think/theorize *could* be Lyme based (one is dx'ed growth hormone deficient...no known cause...I've theorized for years that it was autoimmune based on other immune issues).
Here is where I start asking for help. Right now this second my mind is mostly clear. That is becoming a rarer and rarer thing these last few months. =( Anyhow.
The kids are on government insurance. I, myself, have NO insurance. We have NO way of changing this and NO way of paying out-of-pocket for even a reg. dr. visit.
I haven't seen the dr since my youngest was born, save that one ER trip which I *think* they have finally given up trying to get $$ out of me for...lol
I've treated every infection I've had for the last 9 years with garlic (and tons of water when I had the double kidney infection!) and/or cranberry.
I've been gathering so much Lyme info, but now can't seem to wrap my brain around what to do with it or how.
Should I start with natural, herbal supplements and just try and feel at least a little better (but maybe- or would it?- mask test results, etc if I DO manage to find a way to see a dr)??
Should I just keep doing nothing and try and find some way of seeing a dr?
Should I approach the kids' ped with the Lyme idea and hope for the best?
Should I somehow try to find a LYme dr for them and do it that way? (I'm sure this would mean going outside our insurance network, so it would be out-of-pocket)
My house is a disaster, my projects are all sitting undone, I am quickly getting to the point where I will be incapable of taking care of the kids, so *something* has to give...just what? where? how?
Sorry this is so long. I've left out a TON and tried to only put in the highlights. Thank you for reading this far.
If anybody here could help me formulate some sort of a plan...at all...even if it is just how to get my house cleaned up and how to remember the kids meds...=)
Thanks in advance, Smurfy who has been physically 'off' today, but mostly mentally 'on' for a nice change. =)
[ 29. October 2007, 10:22 AM: Message edited by: SmurfyMom ]
Posts: 155 | From Texas | Registered: Oct 2007
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tailz
Unregistered
posted
I must have been in the ER the same night you were when they were handing out one anxiety attack diagnosis after another - all to women, of course. Male honeybees are stressed out, too, though...
But seriously, I would start tracking your symptoms and see if they correspond to electromagnetic field exposure of some type. I know my symptoms seem to be triggered by ELF exposure - typing on the computer, driving my car, etc... I measured the fields in my home with a gaussmeter - sure enough, that's what my problem is.
Try googling 'electromagnetic hypersensitivity', 'electrical sensitivity', or 'microwave sickness'. My own hunch is that electromagnetic fields are causing chronic infections such as Lyme. Bacteria, I learned, have a magnetic sense.
I have no doctor either. I've had some luck with mastic gum, which is an herb, but it only has helped my stomach so far. I tried kelp today for my thyroid - so far so good.
If you do have problems with ELF though and you work in an office with computers, fluorescent lights, etc..., that's not too good. That's my dilemma - I don't know where to work. It seems everything involves ELF exposure to some degree.
posted
I think under the circumstances you need to find a way to get to a LLMD for yourself. Explain your financial situation so that they can work with you at minimizing costs. Or, go to another doctor and request the Western Blot test (skip paying for the ELISA). The short-term cost does not compare to what the long-term cost could be.
As far as the kids, I would take them to the pediatrician and see if they will do the western blot. I told my kids' doctor that I had Lyme and would greatly appreciate it if she could ease my mind about the kids (meanwhile, neither were showing symptoms). I kept my request polite and tried to tap into the 'mother to mother' thing (pediatrician is a woman).
Good luck
Posts: 561 | From mass | Registered: Jul 2007
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posted
HI, I am new here too, but have been treating lyme for awhile with only herbs.
I have been to an LLMD and he gave me antibiotics which I took for about a week and then stopped.
I thought I would offer the only thing I know of that could help you while you wait to figure out what you can do.
Start oil pulling with either sesame seed oil or sunflower oil(costs about 5$).
It will help to start pulling out toxins. I know your wondering what in the world is that?
go here and it will explain everything in detail http://earthclinic.com/Remedies/oil_pulling.html It is the cheapest alternative remedy I know of that can help with lyme disease, and just so you know, herbs for lyme are very costly unfortunately!
Noelle
Posts: 16 | From PA | Registered: Oct 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I wish it weren't so late... and I wasn't so tired... or I could talk your ears off. I do believe everyone here would attest to that! HA!
Bottom line...
Get kids to a doctor.. the younger/newer doctor the better (more open minded sometimes). Be prepared and take with you the info you think important.. and the number for them to use for Dr. J in CT.
If they have any questions they can contact his office for assistance. That way little old YOU aren't advising them.. the big shot docs... on how to do it... which we KNOW they hate!
You might also contact the TX Lyme support groups and ask for info on docs in your area... if any.
Also.. the Lyme Disease Association has a fund.. Lyme Aid for Kids... that MAY be able to help out with the expenses???
Sorry my thinking cap is in the cleaners right now or I'd belt out more ideas. Hopefully others will join in and offer help too?
I didnt know about the Lyme aid for kids...that is fabulous and great to know.
Not having insurance has to be very hard in dealing with this. i cannot imagine the predicament you are facing and I wont pretend to.
I do know that not getting treatment wont get you anywhere but where you are or have been. I pray that you find a way...be resourceful. Beg if you have to. Plead your case and do whatever
you can to be treated.
i too went 8 1/2 years without a true diagnosis. My insurance, having it, didnt really help aid in that as they wanted to and did run every test imaginable then came back with
the same thing you got - panic attacks, anxiety, stress, depression - psychosomatic - nothing is wrong - take some pills and go to counseling!
Tried that, didnt work. As a matter of fact I asked my dr one time, yeah, this stuff is really helping my emotional status, but it hasnt done a *#!n thing for my physical symptoms, suppose something else might be going on?
No, he says, keep on it and it will get better.
yeah right!!! That is still funny to me.
I jsut sincerely hope you find a way to get teh treatment you deserve for yourself and your kids....
Thinking about you!!!!!!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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That is still funny to me.
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