posted
Disclaimer: This post may be insufferably boringly long with a touch of rant-iness . . .
So I was going to wait to check this forum out until I was actually *diagnosed* with Lyme. But who knew that would take so long? Some doctors would rather swim the entire English Channel covered in fish chum than allow for the possibility that I may have Lyme, it seems. So, being as it was so so hard to even get them to test me, I decided to go ahead and pre-emptively diagnose myself and start reading all of the wonderful posts here. And I'm so glad I did.
I should back up.
Hi. My name is Alison and this is my story up until now. A few years ago, I was in a car accident (I got rear-ended). I thought I must have some sort of bizarre concussion (even though I didn't hit my head) because I started developing these very strange symptoms. I had trouble remembering words, I got lost trying to get to work and home, I had trouble speaking sentences, I felt weak, and I noticed tingling in my hands, feet, and tip of the tongue. And fatigue, oh the fatigue.
This gradually developed over the months to full blown pain in hands and feet, sore throat, aches and pain, weight gain, and just feeling completely drained. I finally went to the doctor and tested positive for mononucleosis. So I thought, ok, a couple months on the couch and I'll be as good as new.
Which of course didn't happen. Four months of being flat on my back on the couch and watching waaaay too much Texas Hold'em poker on TV. . .
It was back to the doctor with the new diagnosis of fibromyalgia (Doctor: sorry, we don't know what causes it or how to treat it. Me: You mean to tell me that with all the advances in medicine, you can't even *begin* to theorize what might be crippling millions of people?). Shortly after this I was let go from my job because I was too sick to work, and my health insurance was cancelled because, after all, there is no clinical test that proves that I had "fibromyalgia" so they had no proof that I was actually sick. Yay.
So I tried the "I can just live with it and tough it out and pretend it's not there" approach, with dismal results. It's now been about 3 years since this all began, I have gained approximately 50 pounds (why oh why can't this be a *wasting* disease, I often bellow at the universe), I am swollen up like the @!^(@!*$ Michelin Man, can barely move, and hurt all over, all the time.
Thank goodness for the person who posted in another forum that people who have fibro may have Lyme. I started researching my heart out. Now, I'm armed to the teeth with info and finally connected with great Lyme people who have been able to point me to LLMD's in my area and are just good to talk to.
So goal number one is to get a diagnosis. I went to an infectious disease doctor yesterday. I asked him if he would please let me do the Bowen lab. I also asked him if he could please test me for mycoplasma. I didn't even care what he thought about what I had, I just needed him to order the @#$^& labs. I had brought all the information with me. He told me that he would absolutely not do it because he didn't know how to interpret the lab results (!!! How many years do you have to go to medical school to learn how to NOT be able to interpret lab results?!). he also told me that he had no idea what I was sick with but that it wasn't an infectious disease, and that there are no cases of Lyme disease in California. And of course that was reinforced by the fact that my Western Blot came back negative (too bad I didn't have it sent to Igenex but I didn't have the choice at the time -- I was just begging my rheumatologist to order it to humor me). So then he shooed me out the door with that "you're a crazy lady" look in his eyes. What a waste of $200.
OK, so, I'm on the right track here at least. I was never bitten by a tick that I remember but I have tons of moles and I do recall one or two "new moles" that came off when I scratched them, so who knows? I know Lyme and co-infections aren't just transmitted by ticks. I also have almost all the symptoms on the different lists I've seen. Sigh.
Of course what I hate most about this disease is that every day I feel like I'm dying. I hate waking up every day and not feeling any better. I hate doctors telling me I "look fine and very healthy". I hate all this water-bloaty-swollen 50 pounds of weight. I hate people not understanding what is going on with me. And people thinking I'm completely crazy and should just say I have fibromyalgia and sit back like a sheep and swallow fistfuls of trycyclic antidepressants. And the insomnia! I hate not being able to work or do anything productive. All I have energy for these days is watering my mom's geraniums.
But listen to me, I sound like such a pessimist. Ok, here's what I love. I love that I have a great family to be there for me (even though I'm a 33 year old married woman living with her parents). I love that I don't have to worry about what to wear because (a) no one's gonna see me anyway and (b) I had to get rid of all my clothes and now own only a few "fat" clothes. I love that so many people have such good advice and support on this forum and the local support group I've found. I love that there are lots of good things to try to treat this, both traditional and alternative.
Thanks for letting me rant a bit. I'm so glad this site is here. The other two sites that have helped me a lot in my research are:
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. "Lyme literacy" means, first and foremost, knowing how to diagnose the disease accurately. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead. Lyme Disease symptoms 2005 Lyme Symptoms 2005 Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer. Support Links LLMD's
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Good job, Alison! Too many people "settle" for the dx of fibromyalgia and won't consider other possibilities.
I too, was misdiagnosed with FM....a long time ago. Finally found out I had Lyme 5 yrs ago. I've been successfully treated for the most part.
I've had some setbacks recently, but will bounce back eventually!
I love your strong, positive spirit! You will fit right in on Lymenet! We need you!
Now, about that weight gain....Lyme causes some people to become very thin and others gain weight.
You might want to consider the fact that you could also have systemic yeast. That will cause you to bloat and gain weight [especially since you will crave sweets and carbs if you have yeast].
Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
Alison,
Hi girlfriend--so glad you found us!
We don't have any Lyme in East Tennessee either--all the ticks with Lyme ('cause we have a lot of ticks) stop at the Tennessee/Kentucky/Virginia/North Carolina border and don't come here. Apparently a few rabalrousers didn't get the word--cause my whole family has Lyme.
I immediately noticed your correct ussage of the word "ya'll" in your title--do you have southern roots?
Whatever your roots we are glad to have you and hope we can help you and hopefully you can pas it on to so many others that are undiagnosed.
WELCOME!
L
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
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Print off the links then check them off as you read as you could spend several months reading all of this. Treepatrol constantly adds new links as they become available from the members here.
print & read Dr. B's (a lyme literate MD) info first; you will come back to this often.
Some guidelines from Betty/others on using this message board:
* Do NOT use all caps when posting; it's hard on our eyes. But I know one of our members has macular degeneration, and all caps is what she can see & read so exceptions like this are acceptable for good reasons.
* We chronic, late-stage lymies can NOT read long paragraphs. So please limit your paragraphs to 6-8 lines max of text and double space between paragraphs.
* You can EDIT your text comments anytime. You can NOT edit your subject line so please make it as specific as possible instead of ``help, question'' etc. in order to have more readers/replies in trying to assist you. There are between 30-40 NEW/replies to post daily so we can't read all the posts on our limited time here...thanks for understanding.
* If you use the ``quote'' icon, please DELETE [B] bold at the beginning & ending of the quote. This makes it easier on our chronic, late-stage lyme eyes.
* To just reply without quoting, go to the top or bottom of screen in the black & white area to reply or post a new topic. Many of us couldn't see it when we 1st started posting. Thank you for helping us all out! * * LYME SYMPTOMS - http://www.lyme.org/otherdis/ld_symptoms.html Bettyg, Iowa
Posts: 1 | From US | Registered: Aug 2015
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JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
I just hate ID's docs, don't you?
The one I went to told me I had sleep apnea (I've gained about 50 pds also. But have no sleep apnea symptoms - just can't fall asleep or stay asleep), rosacea, anxiety (that is the one thing all doctors like to blame - your anxiety and/or depression - guess it's easier to blame you than to say 'I don't know') and allergies. ???? I went to my appointment with about 3 pages typed of around 40+ symptoms.
He said no way you have Lyme. You don't have a rash and you didn't test positive with Labcorp....
I went 2 yrs (15 doctors) before getting diagnosed. I had to diagnose myself and found a LLMD from someone on Lymenet and was finally diagnosed by a doctor! I was relieved to have Lyme (isn't that sad?)!
Of course my health insurance does not cover our LLMD or Igenex.
I also was misdiagnosed with FMS 1/2 way through my ordeal.
My husband has just started showing symptoms for about a year now. I am 99.9% sure he got Lyme from me, not from a tick.
I think you would really enjoy Dr Wiseass' blog/site. You can start at her first blog (1st previous post Once Upon a Time, a Woman got Lyme) to understand all that she's been through. It is really funny (and sad since most of us have gone through the same crud she has). She has become a dear friend of mine. You will get many laughs from her writing. http://twistoflyme.blogspot.com/
Thank you so much for the responses! Tree, I plan in taking a long time to go through that great list you gave me. And Betty, thanks for the guidelines.
Already I have managed to meet a Real Live Person With Lyme today who lives in my town. Also, I have an appointment with a LLMD next Tuesday! Wahoo! I wonder what it will be like to talk to a doctor who won't think I'm a crazy medical mystery.
Lymetoo - You know, I have to thank you for reminding me about systemic yeast. I am 100 percent sure I have a raging candida problem. A few months after my weird symptoms started, I will never forget this because it was Halloween and we had bags of chocolate left over, I developed an insatiable need to ingest massive quantities of chocolate.
Kit-Kats were my drug of choice, but I wasn't particular. I just couldn't stop eating it. I was like that monster in Men In Black that lands on that farmhouse, kills a guy and wears his skin, and staggers around New York screaming "Sugar! Shuuuuugarrrrrrr! . . . In the back of my head I was thinking to myself, hmmm, this doesn't seem normal. Those yeasties love them their sugar.
LindaLD -- I'm not originally from the South but I did live there for awhile as a child, so I can whip out a Southern acccent and yes, "y'all" somehow became ingrained in my vocabulary even though when I say it here in California it tends to elicit strange looks, to which I reply, "What? All y'all never heard anyone say 'y'all'?"
Ok, a quick question. When I go see the LLMD for the first time, is there a list of specific tests I should ask him for? As it stands, I am going to ask for the Bowen test and also testing for mycoplasma. Should I also ask for tests for ....the whaddayacallem's like babesia, erlichia, bart . . . etc? Even though I'm asking for Bowen's Q-RiBb, should I also ask for the Igenex Western Blot in addition? Basically, which tests should I have first in addition to Lyme tests?
You guys are so great. I have so many great leads on doctors now. Before I found this site I only had one name of a doctor who wasn't taking new patients, Dr. S. His office called me today and told me that Dr. G would see me but it would cost $600!!!! Yipes!
Ok, well looks like I've gots me some reading to do with all the great links you guys gave me . . .
*contorts face in serious expression and whips out highlighter determinedly*
Cheers,
Alison
Posts: 923 | From California | Registered: Aug 2005
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Hello Alison, You've found the right place for advice and support. I only joined a couple of weeks ago and I can't believe how brilliant it is, everyone is lovely and soooo knowledgable. It really is a much needed life line for all of us. Your story sounds very similar, as I'm sure it is for many other sufferers. A good doctor that has the all important skill of listening to their patient (and believing them)is unfortunately an extremely rare species- well, it is over here in the UK.
Posts: 229 | From United Kingdom | Registered: Jul 2005
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Alison, read Dr. B's guidelines 1st for your 1st LLMD appt. next week. Try to comprehend what you can from it...good luck and glad you found this site.
bettyg, Iowa
Posts: 1 | From US | Registered: Aug 2015
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I just started reading your blog. It is so refreshing to cry tears of laughter for a change as opposed to those of pain (like I did tonight at a wedding wearing the wrong shoes..what was I thinking -- oh God, the horror, I could barely walk I was in so much pain...step...whimper...step...whimper). I absolutley love your writing. I can't wait to read the whole thing!
Yes, it's amazing to have met and know about so many people in California with Lyme. I'm trying to figure out how to get the word out that there's no Lyme in California and that it's only an East Coast problem, and a small one at that (Ha ha ha ha ha ha). When I heard that ID doctor say that, my eyes just about rolled up into my head as I wondered how much he spent on medical school.
The kicker for me was when he heard about my 50 pound weight gain and told me helpfully that I could lose weight by eating less (wow is he brilliant). As I'm sitting there staring at his big pot belly, I thank the heavans that I never decided to go to medical school.
Yes...the Texas Hold 'em. My husband brought out some poker chips, thinking he would whup me and I cleaned him out! I got really hooked on the celebrity poker...I had the hugest TV crush on Phil Gordon for awhile. I can't wait to see what new skills my next TV obsession will bring . . .
Alison
Posts: 923 | From California | Registered: Aug 2005
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