posted
My first real post here, names Nathan, and have been recently diagnosed with chronic Lyme, after being miss-diagnosed for 9 years, but with symptoms going back maybe as far as 16 years.
I've been a member on Lyme Friends for a bit, and had posted a while back here for just a doctor referral, but this is my first general post.
I'm going to try and make this as short and sweet as I can, but there has been so much going on, it's hard to put it all into a short post, but I'm going to just hit on a few of the big things and anything else you want or need to know, just ask.
I live in north east Indiana, and like a lot of places, nobody here has a clue about Lyme. Been misdiagnosed with mental illness for the last 9 years, but about 8 months ago my body started deteriorating fast, dropped a lot of weight, ect.
I found an okay LLMD about 2 and a half hours away, but am not being treated aggressively, and have not been tested or treated for possible coinfections.
Have yet to do an Igenex western blot, but while I was in the hospital for a week earlier this month, tested negative with an Elisa test as I expected. I want to do the Igenex test but money is a huge issue.
I have Indiana State Medicaid though.
Have done a CD57 test that came back an 11, which I know is very low. Also test with having high levels of lead and aluminum. Weak antibody showing for candida. No tests for coinfections done.
Having many neuro problems so it's been hard for me to figure out what to do, or to communicate clearly online even which has held me back, but I'm determined to make some more progress.
I have been on 300mg of Doxy for about 6 weeks now, and started 1750mg of amoxicillin a day last week along with the doxy.
I was recently in the hospital for a week when I lost all control of my body and slid down the stairs, and couldn't move or talk for two days, but have slowly gotten most functions back. I also had a seizure while in the hospital and coded and all that.
They of course threw out the diagnosis of Lyme and had to have phsyc consults and all that fun stuff, with an infectious disease doc, "completely ruling out Lyme" from their Elisa in house test, and with looking up diagnostics online, haaaaa. Yeah, I know the whole deal with everything, and it has been the same as most deal with, with doctors having no clue what they are talking about.
I'm looking at my next step with things, I have an appointment wednesday with my current LLMD, but she's not a specialist and I have been feeling the need to go to a full specialist, have been thinking of Dr. C in MO, but money is a major issue, and I'm having to convince family of the need to take drastic measures of traveling that far.
Brain fog is terrible, so I have trouble sorting through everything and figuring out what I'm even doing most of the time. Um, so sorry if my posts aren't ..... concise.
I have questions, but I can't figure out what to ask...... I know I need more help than I am getting, but I can't think things through to get more help and parents keep leaving things up to me to do anything.
I'm fighting hard, but scared I'm too far gone.
What do I do next? I feel like I just need somebody to just tell me, you do this, than this, and do that.
I don't even know what to ask. x_x
I'm also applying for disability with a lawyer, uum... taking lots of good suppliments.
Anything you need to know to help you help me, ask and I will do my best to answer.
Thank you ahead of time for any help or encouragement.
Posts: 17 | From Near Ft. Wayne. IN | Registered: Mar 2009
| IP: Logged |
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Hi Nathan,
I completely understand that money is an issue. I think Lyme is an expensive disease in so many ways.
But, your symptoms are so severe, so frightening, really, so dangerously life threatening that if there is any way possible I would get to a good LLMD.
As you probably know, co-infections are pretty common and a good LLMD will test you for these.
You can post a request for help finding one in the "Seeking a Doctor" section of Lyment.
The folks on this board have all been touched one way or another with Lyme and sincerely will help you answer questions.
I am new to this whole thing. Got clinical diagnosis after having been sick most of my life. I am 52.
I wish I had more wisdom and advice and could offer you some comfort.
Please try and get to a good LLMD.
I wish you all the best on the road to good health.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
| IP: Logged |
bettyg
Unregistered
posted
nathan, welcome!
check your profile above for my pm on s. wisc. llmd who is very affordable and good!
check my newbie links below using table of contents and i have 35 plus good pages of info on SSDI, disability insurance benefits; SO YOU CAN WIN 1ST STEP, 1ST TIME!!
see if you and family members/friends could help you put this together using that info and save yourself $5200 for lawyer's winning it.
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @
please go to my newbie links, copy the entire thing, and then print this off....FINANCIAL BURDENS compiled by melanie reber print off pages 74 - 92; outstanding info there. i believe there are a few more general comments there without links!! print that off too as it's newer info from members thru their own personal, tragic experiences.
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
IP: Logged |
posted
DR C of MO would be a good choice. What other state are you closest to ??
Dr C only requires that you return every 4-6 months.... so that is a plus when it comes to money.
I'm sorry you've been so ill!!!
When/if you have medical questions, be sure to post them over there...not many show up here in General Support....That's why you don't have many responses here. It's OUR fault, not yours!!
take care and hang in there!!!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Wink]](wink.gif)
otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. 
Printer-friendly view of this topic