posted
I figured there aren't any in Nebraska or Iowa, but if there are any nearby like in Missouri, Illinois, Minnesota, etc, that would be greatly appreciated.
Doctors in NE don't know anything about Lyme since it's a rare occurence here. Any help from anyone would be appreciated. Thank You.
[ 29. November 2006, 09:25 AM: Message edited by: Tom J ]
Posts: 10 | From Omaha, NE | Registered: Sep 2006
| IP: Logged |
posted
I'm a newbie, so I'll list what is going on with me and what tests I've had done...the doctor request is for me.
I had red rashes on my inner forearms, then my outer forearms and thighs turned red, then I got these pimply rashes on my stomach and chest, a little on my arm, and some on my back.
A couple days later, I felt a pain in my left tricep with a little "scab", then my right arm went numb, my legs seized up and my heart started racing and breathing was difficult...this went on for several days until it subsided.
Then, I felt a really bad neck pain and I feel pins and needles on my arms, legs, stomach, back, and neck...once in a while on the side of my face.
About a month later I started having stomach and chest pains, constipation/diarrhea.
I got the flu shot on November 8th, and I started having severe muscle contractions/jerks all over my body, my legs and knees hurt, and I still have them, although they are not as bad as they were.
I had the Lyme and West Nile tests done (although those were done about 3 weeks after the rashes occurred and I was on antibiotics at the time), and they both came up negative...that was August 17th. I don't know what lab they were sent to.
Ever since, even after seeing a Chiropractor and other doctors (I haven't seen a neurologist yet), I'm still having these symptoms... 3 1/2 months later.
I also had CBC, CMP, lipase, amylase, and lipid tests done, and they were fine. That was about a month ago. Are these symptoms of Lyme or is this something else?
[ 29. November 2006, 09:25 AM: Message edited by: Tom J ]
Posts: 10 | From Omaha, NE | Registered: Sep 2006
| IP: Logged |
David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Tom, Welcome aboard, sorry you need this forum. The symptoms you describe sound like they could be Lyme. My suggestion is that you read the Medical Questions section of this site, especially the newbie links. You will probably find it enlightening.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
| IP: Logged |
bettyg
Unregistered
posted
hi Tom and WELCOME!
I'll PM, private message you, with LLMD names; you are RIGHT; NO LLMD, LYME LITERATE MDS, in either Iowa, Nebr., Ill., etc!
I'll also PM you with my 21 pages of newbie links/advise which includes TREEPATROL'S NEWBIE LINKS thread!
Now read, read, read; knowledge is power!
IP: Logged |
I spaced out my entries and I read your posts that you sent. Very detailed. Thank you for your response.
Posts: 10 | From Omaha, NE | Registered: Sep 2006
| IP: Logged |
troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
Tom...I lived in Bllevue for a while...then Glenwood...so....
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
| IP: Logged |
bettyg
Unregistered
posted
Tom, great job breaking up your post; glad newbie links/advise helpful
IP: Logged |
posted
Thank you to everybody who responded to my post...PM and replies.
I'm not totally certain if I have Lyme disease, but I need to figure out what to do next. If I do have it, at least it is in the early stages and will hopefully be treatable.
I did the LLMD search and there is one ILADS doctor in Kansas City Missouri, but from others I heard from there are doctors in parts of Iowa that can be seen to determine if I have Lyme.
I'm not certain what to do. Does anyone have any ideas as to how I should approach this?
Most of the doctors want your local doctor to do the blood tests, but my previous doctor already thinks I'm a kook, so I will probably have to find another one.
I've only been off of antibiotics for a week, and I know at least 2 weeks are needed before a retest, although it's been almost 4 months since the last one.
Posts: 10 | From Omaha, NE | Registered: Sep 2006
| IP: Logged |
I was on Cefprozil (generic of Cefzil), a 2nd generation cephalosporin, for a sinus infection for 14 days. I got off of it on Sunday 11/26.
I'm not sure if that made a difference since I don't believe Cefzil is used for Lyme Disease eradication.
Posts: 10 | From Omaha, NE | Registered: Sep 2006
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Hi fellow Husker, Yep me is one too!! Sorry for your quest for info.
Follow the little brick path to southern Missiouri as soon as possible so you can get better soonest!! Thats where people from here sent me and its the real deal.
You can PM me if you cant find name and number.
Four of my kids live in your city also so get there once and a while.
Dr. C did give me names of two lyme aware docs in Omaha BUT I dont know there specalty or what else they treat. Think it was in relation to bone necrosis.
The earlier you get to Dr. C the faster you will start feeling human again.
Lucky you are starting out as a fresh infected case instead of an old chronic case like 90 % of them from our state.
The LLMD that is in KC is supposedly full and doesnt take new patients. from what I heard quite a bit higher cost too!!!
Miles "DONT" matter when you are dealing with your one and only health. Go for the "BEST" and pass the rest!!! You will be glad forever more!!!
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Tom, Hello, I'm the person who referred you to LymeNet. I'm so glad you decided to check it out.
You'll need to do a lot of reading to educate yourself about this, but I think you're doing great already.
Best, Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
bettyg
Unregistered
posted
Tom, so your regular MD told you he would NOT order a western blot igm and igg blood tests for you to test for lyme disease!
Do NOT go Iowa; we do NOT HAVE ANY "CHRONIC" LLMDS here!
We have some beginners, but they tak 1 patient PER MONTH; and limit lyme patients to 20 max!
I too recommend Dr. C; I'll email you by PM -- HIS INFO .
IP: Logged |
Please call the individual I suggested in the PM. A MD in Iowa familiar with Lyme will be able to at least get you the proper test (WB from Igenex) and start you on a short course of appropriate antibiotics until you get in to see an LLMD. Lyme disease can become disseminated into the nervous system and other organs very quickly, so please don't believe you have all the time in the world to make this decision.
There ARE doctors in Iowa and surrounding states who can help you, contrary to what some believe.
-------------------- Some day, this mamma's gonna dance! Posts: 199 | From here | Registered: Apr 2005
| IP: Logged |
Thank you for your help again. I read the PMs and the posts.
Just Don: I have Dr C's info...provided by BettyG. I'm not sure if I even have Lyme, but I guess the only way to find out is if I get the proper tests done.
I'm kind of money poor, so I don't know what it would cost out of pocket or if my insurance will cover any of it...they covered all of it before when I got tested by my doctor.
Carol in PA: I've gotten alot of info off of this site from very caring people. Thank you again.
Lymetoo: I haven't made any appointments yet...not yet anyway.
BigMamma: I haven't had the chance to do anything yet. I was out of town on business for a few days and work and other issues have taken presedence (unfortunately).
BettyG: My doctor didn't specifically say that, but he's the typical doctor in NE that says "Lyme doesn't occur here...I've never seen a case of it yet and I've been practicing for 30 years in NE".
When I got the doctor bill for the tests, it didn't specifically say what tests were done (my ignorance).
They did test IGG and IGM when they did the West Nile tests, and those were negative. I'm not sure if there is any difference between Lyme and WNV when it comes to the IGG and IGM.
My guess is that an ELISA was done and it was negative, and they didn't do other tests. It did take almost 2 weeks to get my result though, so I know they sent them somewhere out of state.
I probably got the test too soon since they were done about 2 1/2 weeks after all of these rashes and things showed up.
What I wanted to do is to see an allergist and make sure I'm not allergic to something that still is causing my weird skin eruptions.
I probably should see a neurologist too for the head/neck pains and the pins and needles I'm having over most of my body, but a referral is needed and it'll take a while to get in.
I'm still not 100% certain what to do. I have a feeling I'll be wasting my time/money with some of these docs, but I wanted to eliminate things to be sure of what is going on.
Sorry for being so paranoid and for the long post. I'm not 100% convinced I have Lyme, but like everyone said get tested and make sure.
If I don't have a tick disease, and least I'll know that for sure and I can eliminate those from the list.
Posts: 10 | From Omaha, NE | Registered: Sep 2006
| IP: Logged |
posted
Just wanted to thank Carol in PA for the Igenex info. I've learned alot about Lyme...even if I may not have it!
Thanks to BettyG too for her info...very valuable information.
I went to the allergist today and got the "35" pinpricks. I'm massively (i.e. off the charts) allergic to 14 things.
I'll probably have to allergy shots if the upgraded antihistamine (Clarinex D) doesn't work. Allegra, Zyrtec, and Sudafed don't work, Benadryl makes me very sleepy...even on 1/2 a dose.
I'll advise when I decide to get the tests done...I've got 2 more docs to deal with first for things I want to make sure of.
But to everyone, thank you again. Posts: 10 | From Omaha, NE | Registered: Sep 2006
| IP: Logged |
just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Tom J, I will agree with your thinking.
Dr.C is a gereral MD. He can help with most of those things you worry about.
I would be double careful about getting tested ANY where else other than there. MOST docs(regular local MD's) dont do the test correctly, time it to the right time of the week, send and prepare to send correctly.
JUST as an example of what others can goof up. let alone send it to a lab that is ANY good.
Dr. C has a checklist of symptoms with values associated with them and getting to a certain number says --maybe,,,next level--sure have it,,,next level---no question,,etc.. My checklist was OFF the chart so we both KNEW what was up before I even got there.
Now all that said,,,I am sure it is different for a relatively freshly infected person than an OLD ,CHRONIC, lymie like ME!!!
I know time is important, I know miles are important,,,and I double know money is important.
BUT and double but,,,pick up the phone today, make the appoinment, you will have plenty of waiting time any way to do your OTHER things and can always cancel(NOT last second).
THEN you will know,,he will tell you yes you do, no you dont, or dunno. Waiting will delay getting better and every day you procrastinate means another day further entrenched the little buggers have set up shop in your body(NOT a good thing)
Those tingling pin pricks and neck stiffness are all to ominus signs to explain away(other docs WILL try to do THAT).
Answer me one more question,,,'IF' you are a drinking person,,,do you get an exagerated response and hangover from even a 'little' bit of alcoholic drink????
Like last time "I" had three beers it was a three day hangover feeling. last two soda pops I drank put me on the living room floor for two days,,,thats what I am talking about.
OR when I drank one beer(many years ago) I got all red , itchy, and rashy type and feel incredibly uncomfortable. Lyme is the 'only' thing I have EVER found that explained that weird symptom,,,unless 'you' can find something else.
I have not had one drink since October of 1999,,,because of IT!!! BUT not 'everybody' has THAT sx either!!! But my 'opinion' is IF you are having that prob,,,it IS lyme and coinfections NO doubt!!!IF anyone has info to the contrary I sure would like other reasons this happens!!! Let me know HOW this pertains to YOU????!!!
But the end result of this too long of post. Pick up the phone, make the appointment and go KEEP it,,,it will tell you more than we EVER could!!!remaining--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
| IP: Logged |
posted
Well, I never had those feeling after drinking pop or alcohol, but I haven't drank a ton of that stuff lately to begin with. Alcohol makes me tired, but that's because my sleep hasn't been very good.
I mainly feel tired and body parts hurt because my sleep hasn't been great. My doc gave me Flexeril which helps to sleep at night...I'm getting 6 hours or so of sleep a night now.
I had an Lumbar Puncture, MRI of the brain with contrast, and a viral test for antibodies, and it seems everything is pointing to previously having the West Nile Virus. This was confirmed from the tests and the MRI.
They checked for other infections and didn't see any, although lyme only shows up about 20% of the time in the CSF, but there was no evidence of that in the CSF or the tests done.
I got the testing done at the best University medical center in the state by one of the state's best Neuros. I'm trusting his findings.
The neuro told me my symptoms are from Meningitis, which would explain most of this stuff. The flu shot he couldn't explain (nor could 3 other doctors), so they figured it was a fluke.
I'm going back in a few weeks for other MRIs on the neck and back to see why I'm still having the pins/needles/numbness/tingling.
He's not certain about doing an EMG yet since he doesn't see any atrophy or muscle coordination loss.
Sorry I didn't reply sooner...went to the doctors and didn't get the results back until this morning.
So, it's looking less like Lyme, but I'm going to get other tests done first and visit the lovely Gastroenterologist for an Endoscopy and Colonoscopy in about a week.
Posts: 10 | From Omaha, NE | Registered: Sep 2006
| IP: Logged |
just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Tom. Congrads on geting the though once over of ALL your systems and their functioning.
I wish I could tell you better,,,even wave the magic wand over your head and make you all better.
The closest you will ever come to that IS seeing Dr. C and ruling in or out lyme for good.
NOT everyone 'has' lyme!! Thats a fact,,, there are alot of people who dont know they have it,,, they wait till their sxs are SO severe, and the little buggers SO entrenched, they cant be booted OUT!!!!
Do yourself the biggest favor of all,,,protect your health,,, get an opinion from somebody that really matters!!!
Call it a mini vacation--go see some sights-- go see the only good LLMD in the whole Midwest. Just "GO". You are thinking up every excuse NOT to go.
Thats penny wise and pound foolish,,,in my book. Turn back the pages far enough for ME to get to your status and see what I would gladly do in YOUR shoes. Go for those of us that are too late to go for ourselves!!!(And get helped!!) dont be late--GO NOW!!!!
Take somebody fun to road trip,,, along with you,,,make it enjoyable,,,this doc isnt going to hurt you,,,and he WILL listen to you better than 99% of them!! IF I cant say the right words to convince you of the NEED for speed to get there,,,Talk to somebody else here that CAN!!!!
NUFF SAID,,,your future is all in YOUR hands. AND if you have a family,,,,do it for THEIR sake, then!!!
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
| IP: Logged |
posted
No, it wasn't the U of Iowa...I'm not going to mention where I got those tests done, but it wasn't the U of Iowa.
If I'm going to get this test done, who actually draws the blood and sends it to Igenex? I had one person tell me my local doc can do it, but another said to have an LLMD (Dr. C) do it.
And what tests do I ask for? I don't understand the entire lingo of bands and all of that, so I don't know what to tell my local doc (if he has to do write the order) or if Dr. C does all of that.
In addition, does Dr. C take any insurance for the visit? The blood draws I'm 100% certain my insurance would pay for, but the actual tests I'm not 100% certain, although my insurance company has in the past few months that I've had them done.
This is why I'm confused...I've had several different answers to this question. There should be one easy way...the LLMD would know what to draw and what to look for.
Why would my local doc have to do that when he wouldn't probably understand what to write?
Posts: 10 | From Omaha, NE | Registered: Sep 2006
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
Did you look at Igenex site? I listed the numbers and names of the tests to ask for.
Call Igenex and ask for a kit for the tests #188 and 189. Then read the instruction sheet that is included, and that should answer most of your questions.
I'll be happy to answer if you have any more questions.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Tom, Regarding having your local doc order the Western Blot tests, or having the LLMD do it....
I asked my family doctor to order the tests and his office drew the blood. They had never sent stuff to Igenex before, and acted like I was very strange for not having the test done locally.
They filled out the information form, but when they looked at the packing information, they kept saying, "We've never done this before."
Heh, well I had never done it before either, but I said that I would take care of packing it and calling FedEx to pick it up.
So I drove home and read the instructions again. There were some styrofoam forms to protect the test tube, and that went into a zip top baggie, to contain any leakage if it should break.
I put that in the cardboard box, along with the information sheet and my check, put the stickers on the FedEx shipping envelope. (All this is included in the "kit.")
Then I looked up the FedEx phone number, called them, and made arrangements for them to pick it up. Two hours later, my doorbell rang, and it was FedEx.
I did all this with a raging migraine and vastly reduced mental capacities.
To complicate matters further, when I told the office nurse that I needed my doc to write the order for the tests on one of his prescription forms, she said, "No, that's included on the form he filled out."
When I got home and made sure that everything on the form was correct, I saw that I was right, I really did need him to write the order on his prescription form.
So...I phoned Igenex and asked the receptionist if it was okay to have my doc write the order, and then fax it to me. She said yes.
Then I called my doctor's office, explained what I needed, and they agreed to fax the order to my brother-in-law's office, which was just down the street from me.
Heh, there was no way I wanted to make another 20 mile round trip to the doctor's office.
So....if you had this done at the LLMD's office, you wouldn't have to go through all this rigmarole.
However, if you get the test done, and go to your LLMD appointment with the results in hand, he'll have something to work with.
Plus, you can post the test results here, and get information about interpreting them.
It takes three weeks for them to send the results to your doctor.
Igenex wants the blood drawn and shipped on Monday, Tuesday, or Wednesday, so that it reaches them before the end of the week.
Other labs would let the blood or serum sit around over the weekend and do the test on Monday, but Igenex wants to test fresh blood.
Please don't worry so much about your insurance paying for it. You can submit the bill to insurance later.
I never did submit the bill, because I had a one thousand dollar deductible, which I had not met.
Take care, Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
bettyg
Unregistered
posted
tom, get out the 21 pages of newbie links/advise i sent you; lots there i posted on IGENEX,
if you're on medicare; it's free; otherwise $190 PREPAY for igm/igg for western blot
IP: Logged |
just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Tom, The 'reason' I said have Dr. C do it IS---
I had my local duck draw blood and send in for testing here when I KNEW what I had,,but wanted to save 10 bucks. I asked where he sent it, "I dunno" "Whats the difference?" and if memory serves me correctly it was the end of the week to boot! Everything that COULD have been done wrong WAS!!! Results were "You dont have lyme,,,see I told YOU so!!"
I saw him some time later after positive LLMD test,,,all he would say is you dont have that,,,we ruled that out positively!!!
Fast forward to Dr. C's office,,,he drew on proper day, sent to proper place,,,prepared it as supposed to,,,results were for sure positive!!!
Now which test was worth its cost?? The tests are unreliable enough without adding doctor , nurse errors to boot!!!
IF you get tested anywhere else,,,you may be wasting your time. However "IF" you can do the Igenex test, proper timing,proper prep,proper all directions followed,,,go for it,that will work too and fed X it pronto!! That would surely save you alot of time and money,,so thats a reasonable alternative.
Just make sure,,, really sure you dont have this if possible,,, so you dont go chronic!!! That really SUCKS!!
A fellow husker, --just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 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!
![[Smile]](smile.gif)
which includes TREEPATROL'S NEWBIE LINKS thread!![[Big Grin]](biggrin.gif)
Some day, this mamma's gonna dance! 
Printer-friendly view of this topic