posted
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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bettyg
Unregistered
posted
welcome smurfy! i sent you my 80 pages newbie info earlier when i got on here. so now you have PLENTY of reading material.
look for FINANCIAL RESOURCES or something like that from melanie barker; print it off to help ou since it deals ith everything:
no insurance, cost of meds, losing home, etc.
skim it for now, and note areas you want to read NOW! GLAD YOU FOUND US!
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Smurfy,
First of all Welcome to the board.
I would seek the advice and treatment of a LLMD for my whole family.
My children are being treated by a LLMD as their pediatrician knew nothing about Lyme
And even with my supporting info. regarding their Igenex Western Blot's, was arguing against
Treatment with me. I don't have the time, energy or inclination to educate her at this time.
I think it would be a waste of my time and energy and so I just by passed her and went
On the the one place where I knew my children would get the best treatment. (LLMD)
I would start with finding a LLMD.
There is so much info at first that it is very overwhelming.
Just take one piece at a time. If you need help we are always here for you.
Hang in there. Sending you and your family positive thoughts and prayers.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Smurfymom,
I have no advice and hopefully Betty's print out can give you some information on directions to turn. I just wanted to say that my heart goes out to you and your family and I'm so glad you found this place.
If you can find a way to get into a LLMD, I do think that you will have a better fighting chance against this disease....but as I said, do read the information Betty sent you, in small amounts of time, when you are in your more coherient days.
I know when I first came here, I couldn't keep my focus at all and couldn't read all she had sent in one sitting, but if you chip away at it gradually, there is a wealth of information.
Good luck and please keep us posted on how you are doing. We care!
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
my advice would be to take the kids into a pediatrician on your list. have them do a lyme test elisa, western blot and pcr if possible.
if they have it then you may have to look for state assistance to get insurance for yourself and husband, if you qualify. try not to lose your house over this.
start with the free stuff. look for a free or little cost clinic for you and get tested. then we can go from there. make sure you tell them you had a tick rash, it is not always bullseye.
docdave
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Welcome Smurfymom, I'm very sorry to hear of your situation. I can emphathize since I have 5 family members in the same situation.
Please consider moving your post to the medical section since you will likely get more responses there than here. I think it is appropriate and that is often where new people go to look for medical resources.
Ideally, you would find a Lyme Literate Medical Doctor (LLMD) by posting a request in the "Seeking Doctor Section". Include your State in the subject line. At least get the name of doctors and call to see if any of them take your children's insurance or if any of them can help you. Get costs for any near you so that you have something to aim for in terms of how much money you need to save.
As you've probably read by now, test results for you and your children may not be positive even if you do have lyme disease because there are many cases of proven seronegative lyme disease. That's one important reason why you need to see a lyme specialist (LLMD), who knows how to do an appropriate clinical diagnosis which is based on symptoms AND test results. I know this may be very difficult to impossible right now but put your thinking cap on. Can you borrow any money? Can you get any State help?
In the meantime, you must keep yourself functional if at all possible. This may mean that you try to get something to at least see if it is helpful for you. The Stephen Buhner healing lyme book has helped some people. There are many other options for treatment that you can try if you absolutely cannot have access to an LLMD.
Apparently there are some lyme doctors who will see a patient on a limited income but I don't know if there are any in your area. It can't hurt to ask.
Keep reading the medical forum and keep looking for options. Hopefully others will be by with more ideas.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
SmurfyMom, Please check with your local lyme groups to see if they have any resources for you. Check on the left side of this forum for the support group link. You can also do a google search.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
You need to put your health as a top priority. Without you, what would your children do? It's like when you are on an airplane. They tell you to secure your oxygen mask first, so that you are better able to help your children. I hope that you can find the help you need. It looks like you have gotten some good suggestions. Good luck.
Posts: 418 | From NJ | Registered: Sep 2007
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posted
smurphymom, where do you live? My name is Beth... typo. You can email me at: [email protected] and I will try and help you. You will get through this! This is my second time and my daughter also has lyme. Please write to me. Beth
Posts: 5 | From East Stroudsburg, PA 18302 | Registered: Sep 2007
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posted
Thanks for all the replies! I still don't know what I'm doing or how, but at least I have some ideas. =)
I did look through the local support groups, the DFW one's website is non-functional. There is just an email which I may try later today.
I don't know whether the kids' dr would be cooperative in ordering tests I ask or not. I've predicted every other test result or diagnosis correctly, but it's been a long while.
I doubt we can borrow any $. My parents and 2 younger brothers had to move in with us 6+ yr ago for $ reasons.
Since then my hubby's income has been the only thing supporting the 8 of us. Summer before last we had to start hitting the credit cards.
Between that and my messing up and forgetting payments (so getting late fees added in!) we are way in debt now. =(
I'm hoping to sit down with paper and pencil (and hubby if I can corner him!) in the next day or so and try to put together a step-by-step plan.
Someone mentioned moving this post to the medical board...I don't have a CLUE how to do that! lol I am fairly internet capable, but not very bulletin board capable.
Thanks so much, Chris
Posts: 155 | From Texas | Registered: Oct 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Sorry that I didn't explain about moving your post. You could just re-post your request for help in the medical forum by cutting and pasting the text from your original message.
The responses that you've received here would stay here but you could put a link that points to this discussion too so that people could see the suggestions that you've already had so as not to repeat them.
You may have already looked into this but perhaps your parents can get some sort of assistance (social security or State) whereby they can then have money to pay rent etc..
I know you are not in an easy situation. Hang in there and keep coming back and let us know how you are doing and we will do our best to help you as you go.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Thanks, Terry. I copied and pasted to the medical board.
I forgot to add...my parents and brothers moved out 3 weeks ago. =) Dad is drawing disability now, so they have income again.
It's a HUGE change and way cool, but kinda scary.
Before Mom and I were able to kinda tag-team who cooked or put kids to bed based on who was less worn out (or was still awake!).
Now it's just me, since hubby works nights and sleeps days.
This is the first time it's been just hubby, me, and the kids, aside from the year after my youngest was born. Before that we lived with his mother, since it's been *my* family. =/
Posts: 155 | From Texas | Registered: Oct 2007
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posted
Hi Smurfymom. Just found your post and I have several ideas for you.
First of all, it's unfinished and needs a lot of polishing, but I'm working on an article about dealing with the financial burdens of lyme. Here is the link - For your children, check out Lyme Aid here -
Also, if you don't have a social worker, get one immediately. For children, government programs for health insurance and many other things are very easy to get. There are probably quite a few other things you can get for yourself and your family too through a social worker.
Remember though that social workers work for the government and can sometimes be not quite "up to par". Double check everything they do and do your own research and learn to use whatever appeals or complaint process your state has if you feel your social worker is not doing his/her job properly.
Another thought - for a loan, if you are out of credit, try www.prosper.com. It's a person-to-person loan website. I can't explain it very well, but check it out.
Also, and I've gotten some trouble before for mentioning this, but I believe if you thoroughly research it and take things very slowly and watch your reactions very carefully, it's a good possibility. Look into the Salt/C protocol. PLEASE BE CAREFUL WITH THIS as there can be some very serious risks, but I've read a lot of forum posts from people who have had success with this method of treatment and it's quite cheap.
Last but not least, PLEASE REMEMBER TO DO YOUR OWN RESEARCH. I'm not a professional anything, so these are just ideas for your to look into.
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