posted
I got an IGM CDC Positive on my 2nd Western Blot. The first one was Negative. That just goes to show you how inaccurate that test is.
I never had a Bull's eye rash. I had a weird bite and my first doctor I went to with it blew me off, my groin lymph node was extremely swollen. She decided to test me for Lymphoma for no other reason other than the swollen lymph node. She did not test for anything about the bite.
I got the bite in January (maybe December, but I noticed it in early Jan). By March, I was having neck neuralgias. My neck skin felt like it was on fire and the skin felt really tight. That was my first real symptom that made me think something was wrong.
Everyone, and I do mean everyone that I went to said it was just anxiety. Especially after I tested negative (after someone FINALLY tested me for Lyme in April/May). After my first doctor who initially denied me any bite testing and who said it was all in my head, I switched to a new doctor.
He also said because there was no Bull's eye rash, there was no need for a WB. A nurse practitioner that I got one day because I just came in as a walk in, as my neck had me in agony, erred on the side of caution and she was the one who actually ordered the first WB...it came back Neg.
Then I kept getting booked with that same doctor and when I called to ask for a referral to an ID doctor (at the time, I didn't have...and still don't...any hopes for the money for an LLMD)...and he wrote me a letter and had the receptionist read it to me.
It basically said for me to stay off of the internet and stop reading about Lyme disease. That I didn't have it, I was imagining all of this (by then, I was having facial and body twitches, bad headaches, plus my never ending neck pain to name a few), and he said to get myself a good psychiatrist and psychologist. He didn't have the time to even call me by phone. He told me to take more Xanax and basically stop seeking out the cause of my pain. He denied me MRIs.
I knew something was wrong. I booked my own ID appt and he said there were NO CASES of Lyme in FL and said I had Chronic Fatigue Syndrome because out of a HUGE list of all of the questions I answered "yes" to "cries a lot" and "is tired most or all of the time". The huge list of symptoms he read off sounded just like me, I thought he was reading the list of Lyme symptoms that I had printed off of the internet, and then at the end, one last question "Have you traveled to or ever been to the North East lately?" My reply, "No, I've never been even close to up there". His diagnosis based on that, "CFS".
I booked Neurologist appts, Hypnotologist appts, Psychiatrist appts, Psychologist appts, Pain Management Specialists, Infectious Disease Appts, ENT appts, had an MRI done, switched primary care doctors 3 times....all since March.
Oh...the money I've spent. The time in doctor's offices. The frustration. This experience has been painful and mind boggling. Everyone was basically calling me crazy. I think even at times my own family was doubting me, and they love me more than anything. But when nothing was coming up, after a while, everyone was losing faith. But I knew something was wrong, so I persisted.
When I doubled up with what was left of my Doxy and some Amoxy that I had on my own, I discovered new bull's eye rashes. I RAN to my doctor that I have now and she signed the Igenex test that I so badly wanted someone to sign.
I went back to my Neurologist for a follow up about my MRI results, I showed her the rash and my list of circled symptoms from the internet, and she ordered another test, at my request, from Lapcorp. I just wanted to see if I could try one more time before spending $260 dollars on the IgeneX one (that's what they say is the price for a basic one now). But, I still wonder if I got an IgeneX test how many other bands might show up, along with the co-infections panel.
It came back today as positive. It wasn't much. Positive band 23 and 41 but it's all I needed. CDC positive. And I can't believe I'm saying this but, I was happy. Then I felt bad for being such a sicko for being happy. But honestly, I had ruled out so much other stuff, that it either had to be something really really bad or I was crazy.
I have been in such bad spirits since March when my neck started hurting. I have felt like I was doomed to death. My body was doing weird things like sharp burning pains in my neck with all over tight/burning feelings, facial body twitching, headaches all of the time, frequent sore throats, lots of ear pain, VERY fatigued and anxious, and now I think that my vision is starting to get a little bit blurry. I'm sure there are more symptoms but I can't remember them all...oh wait! The brain fog. I accidentally run into things, dumb stuff. Before I had this positive Lyme diagnosis, all of this stuff scared me so bad I could barely function...I was scared so bad, as a lot of you know.
Now I have to find the money (and I don't know how that's going to happen) for an LLMD. I actually accidentally rear ended someone last week because in stop and go traffic, I don't know what happened, my mind just wasn't "there" and I was in pain, and I tapped him. Leaving his truck unscathed...but my little car, really messed up.
So, I just spent our last $500 "medical fund" on getting my car fixed. My husband and I are going to have to put our heads together on this one. He isn't one to go into debt for something like this, we already have enough of that.
Persistence. I swear, I feel like I've done all of the doctor's work. I'm exhausted from this process. It took so much time, money, and PERSISTENCE. To anyone out there who is new out there and on your journey to finding out what is wrong with you, don't give up. I feel like I should go sleep for a week....this has been grueling.
And, I know it will continue. Finding the money to get fixed (hopefully), feeling the financial strain on my marriage, feeling the physical/emotional strain on our marriage because of how terrible I feel, but I have hope that at the end of this I will come out feeling good again. I miss my old mind. I miss my old self. Today, I feel like I finally got my mind back.
I know I rambled but I hoped that if anyone who was new on this maybe could read it and be like, "Hey, that sounds like me", that it would inspire them to keep going.
That's what kept me going. Being on this board and crying tears of fear because my body was twitching or my neck had stabbing pains, and hearing that I wasn't the only one...made me have hope and not so alone.
posted
I'm not questioning that you have Lyme disease, but how is that a CDC positive if you were only positive on 2 bands?
CDC positive requires positives on at least 5 specific bands.
Most LLMDs would call this a positive, or at least suspicious result... but not the CDC.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I believe that two bands are all that is needed for IgM CDC positive.
Five bands are for IgG.....Right?
It's late and I am very tired so please don't beat me up if I am wrong.
I am so glad you got the answers you were looking for.
Hang in there.
Did the doctor even prescribe you something for your Lyme?
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
G is right.. I think. I'm tired too.. but one of the IG "somethings" you only need two bands... the other 5 for a CDC positive.
N said... "And I can't believe I'm saying this but, I was happy."
You know what happens when someone FINALLY gets confirmation of their disease and gets a positive?
I put on a BIG hat covered in fruit and I dance on the table top for you! , Sooooooooo.. hang in there cause I am getting ready to dance dance, dance!!!
Congratulations!!!!!!
Be happy and be proud your efforts kept you going and looking for answers.... and you were right and the IDiot ducks were WRONG, WRONG, WRONG!
posted
IgM only needs 2 out of 3 and IgG needs 5 out of 10 for a CDC positive result.
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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posted
It says it requires 2 out of 3 for IGM. I'm not sure why. 5 for IGG.
It says on there : CDC's IGG Western Blot Interp.: Positive
I was surprised to get that from Labcorp. I'm glad I tried again. Nothing had changed from one test to the other, one was neg, one was pos. The only thing that changed was that I did a round of easy antibiotics. Maybe it brought those little buggers out to be detected. With all of my symptoms, and while ruling so much other stuff out, I'm sure I have Lyme. I've ruled out so much other stuff.
Now, I'm off to start my day with a painful neck and a constant bad morning sore throat.
It sucks when you don't have the money, you can't just run out and start getting treatment. I know I have this now and I get to sit here and do nothing about it until I can come up with uber amounts of money. I hate that there isn't a simple procedure with someone who has advanced Lyme or Neuro Lyme. I HATE the neuro symptoms the most.
-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
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posted
You know, all this really SICKENS me!! We are just abandoned by the medical community if we aren't from an "approved state". I think I ended up seeing 7 different doctors, none of which even thought about lyme (even after I also had a CDC positive test come back)!!
Maybe I am just in the anger phase here?? How can this be that we have an INFECTIOUS DISEASE, and all these doctors refuse to diagnose or treat us? Meanwhile, we are left to suffer physical, financial, mental, and relational meltdowns.
You know, we are the type that are persistant and can think for ourselves. How many others are just told that it is all in their head and they just finally accept that? I can assure you that Lyme doesn't get diagnosed/treated in my state. I guess these people are either ignored, or incorrectly diagnosed and will never get better.
Reading all that you went through reminds me of the last 7 months of my life. You know when they asked me if I had traveled before I got sick, I told them 'Florida"...of course I was told that Lyme isn't there either-lol. I think we all know what you mean about feeling happy with a positive test. You can't get better unless you know what is actually wrong. I wonder if any LLMD take a payment plan or something?? I know on some insurances, you can file yourself and get some money back.
Congratulations!! I know exactly how you feel and know you will improve (I have neuro-lyme also)!
posted
You need to take that CDC positive WB to your A hole doctor that didn't even have time to be on the phone with you and told you to stop looking on the internet about Lyme. You seriously need to rub it in his face.... not only for the satisfaction, but to MAKE him aware that LYME IS THERE and that HE WAS WROOOONNNNG!!!
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posted
Even before I knew I had Lyme and became just a little bit familiar, with the help of you guys, with this hidden problem in our society...I felt so angry and bad for everyone who was in the position.
Honestly, it was almost too hard to believe at first and I had my doubts because it seemed TOO UNJUST.
My mom and I spend lots of time a day, ever since I became aware of this problem in our country, we sit there and rant about it and it is MIND BOGGLING how so many people suffer and WE have to pay SO much money to try to get well, out of pocket, when we pay good money for our good health insurance. It still seems unbelievable, but I know that it's true.
And now that I finally have an answer to my mystery illness, I do, like you said, think about all of the other people who might not have been as persistent and just walk away to live in mental and physical pain forever, because I had SOOO many doctors tell me I didn't have Lyme, for whatever reasons they could think of. I KNEW that I had this but I also wasn't careless enough to not pursue other options.
I wanted to be thorough and get neurological testing, get an MRI of my brain and neck, check other blood work, Rheumy stuff, etc. This whole thing had started to make me REALLY believe that I was a true hypochondriac. Now I know, it really wasn't me dreaming this up...it was REAL.
Yeah, it does feel a little twisted to be happy about it but like I said in my previous post, it was either Lyme or something really really bad or that I was seriously CRAZY.
I'm also saddened at how long it seems to take for everyone to get well. The neuro symptoms are too much for me to bare at times. I HATE THEM. It can be scary. I want them gone. I will do whatever it takes to get rid of them. It started with a painful neck (not the bones, but the skin/nerves) and now it seems like I'm adding new weird little ones on every week or two.
That's why I want to start treatment as soon as possible. Hubby said today that he's dropping his 401K for a while, so we can take that $200/mo and use it on getting me better. It's going to take more than that, but at least it's more money in the pot. I was surprised that he said that.
I'm really glad that I've found everyone on this board. You've really helped me, made me feel not so scared, and informed me. I felt so alone before. So, thanks again.
OMG, I have a ****list of people to go after when I absorb all of this.
The first doctor who didn't bother testing me for my bite in the BEGINNING...before I had any of these nasty symptoms.
The Infectious disease doctor who said all of the things that I told you about.
The 2nd family doctor who had the receptionist call me over the phone to tell me I was crazy...I think that also breaks the doctor/patient confidentiality agreement, doesn't it?
I'm sure there are more. I definitely have a list of people to go back and rub this in their face and then ask them to further educate themselves because too many people are being sent home to suffer!
-------------------- "~*~My smile hides my bite~*~." Posts: 506 | From N/A | Registered: Jun 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
You have normal feelings that many of us have had before. This whole situation is and has been insane for YEARS.
May I suggest?
Get your mom to start collecting all your medical records. Be sure you have them all. You will need them in the future for many things.
Then contact the medical board. Until we complain.. this will keep happening here in Florida and elsewhere.
I would suggest writing a letter... using the AG's press release (attached) and a few other links... and send them to each doctor with a copy to the medical board.
I suggest doing it AFTER you have your records because I have seen records changed before.... making the duck look like the Prince and the patient look like the idiot.
I suggest doing something in this direction to help vent anger which will hit you and grow deeper and deeper... if it hasn't already. No need to sit with that stress and anger hanging above your head while trying to get well.
posted
hey -- just want to add -- your husband sounds like a wonderful person, holding off on his 401k to pay for your health!!!!
Give him one of these for me
Allie
Posts: 300 | From Northeast | Registered: Dec 2006
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bettyg
Unregistered
posted
since you just joined here, i hope you copied my newbie package to MS WORD!!!!!
delete it from your PRIVATE MESSAGES HERE IN LYMENET! TAKING UP TOO MUCH ROOM OF LYMENET!!
now do a search, edit, find, and type in
FINANCIAL BURDENS look for the DETAILED info on this and melanie reber's name will show up near it ok!
print off ALL PAGES UNTIL YOU SEE MELANIE'S NAME AT THE END!!!
i have added more info to it as it developed on the board!
now you all this valuable info into there for yourself!!!! good luck!
do as tincup says; GET ALL MEDICAL RECORDS; yu have to sign a MEDICAL RELEASE OF INFO from each clinic....
or if you go to individual drs. not associated with clinics, and i got my hospital records too!
it's worth PAYING FOR THEM! *****************************
I pay $15/yr. for my clinic records and $10 from hospital!!
you'll use these too for SSDI, filing for SS disaibility insurance applications if you lose, they fire you, or you quit your job due to your impaired health!
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So, thanks again. 
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