Starphoenix
Frequent Contributor (1K+ posts)
Member # 2402
posted
Somehow, I think you can all relate.
Synopsis: 20 years-ish total, late diagnosis, little tx, Lyme, Bart, and Babs. Seropositive for Lyme and Bart, never for Babs. Former tx center refused tx for Babs because of no positive test. (They were funny that way.) Got a little Zith/Mepron from another doctor with the famous "three weeks of tx for any tick infection, and you're cured" philosophy. Herxed predictably. Continued with other tx center mentioned because they were the best I could find at the time.
Anyway, I'm seeing a new practitioner now. They believe, at this center, that these are clinical diagnoses (thank goodness!), but they still do testing. It can be informative in some cases.
I was told that the results would be in in about three weeks. PA said I could call for them, if desired, or I could wait a little longer to get them at my next appointment. Well, he called ME today. I missed the call, though. I know the only reason he would call me about my results (he said that's what it was about) is because I tested ridiculously high for Babs.
I started happily screeching to my husband things like, "WOW! I have Babesia!" Anyone not "in the know" would think that I was nutsy being happy about such bad news. Of course, when you've been hungry for the validation for a long time, you are happy for the proof, for yourself, maybe to show a nay-sayer, maybe to placate an insurance company....
He will call tomorrow, or I'll call him. I know that the doctor (I see a PA) suspected Babs and suggested Malarone for the future. Maybe I'll get a script.
I KNOW the soaking sweats, severe shortness of breath, intense nausea with rigors, etc., is from that blasted parasite!
Steph
-------------------- Learning to love, and loving to learn. Posts: 1318 | From Shohola, PA | Registered: Apr 2002
| IP: Logged |
livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
Steph , Glad you found your culprit! good luck with the Malarone script! Linda D
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 1389 | From who knows, who cares, but somewhere over the rainbow | Registered: Mar 2003
| IP: Logged |
Spouse has never ending nausea and eating frequently triggers dry heaves and "seizure-like episodes". Swallowed a pill wrong last night and mild heartburn from that caused severe whole body tremors and transient Bell's palsy and all muscles locked up as well -- is that something similar to your experiences?
IV Ativan not doing much anymore, but sometimes IV push Heparin (5000 units)or IV push magnesium (100 mg)will help.
WV Hillbilly
Posts: 48 | From Five Mile Creek, WV,USA | Registered: Aug 2005
| IP: Logged |
Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Steph, you have just experienced the primary reaction to a diagnosis of Lyme or another of the tick-borne diseases.
My friend and I named it the "Hallelujah-Oh sh#@" syndrome many years ago.
I wish you smooth sailing with the treatment for Babesiosis.
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Congrats on the diagnosis!
I understand what you are going through. I spent two years crying in my car in parking lots outside doctors' offices after being told they have no clue what is wrong.
I've gotten excited when I've herxed. Total happiness when I couldn't walk from extreme pain because I knew that meant the meds were working.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Yes It is bittersweet the validation of a positive test or diagnosis.
It seems so crazy but alot of people are happy when they get the diagnosis.
Congrats,
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
| IP: Logged |
Starphoenix
Frequent Contributor (1K+ posts)
Member # 2402
posted
Yup, it sure is bittersweet, Heather. And, Ann, I love the name you've given to this syndrome!!
I am the same way, too, Aniek. It's like, "Hooray! I feel like death. The meds are working!"
Glad to see you again, Linda!
WV Hillbilly: I love the name. I, too, am in Appalachia, although, here, they call it "Appal-ay-cheea" instead of "Appal-atch-ah." I prefer the latter. I'm SO sorry that your hubby is suffering like this. What I meant by intense nausea with rigors is I get severe nausea, to the point of vomiting, but not quite, usually in the middle of the night. I get it with rigors, violent shaking. I shake so severely, that my leg will come off of the floor!
I didn't get a script yet. I can't get back in touch with my PA. I hope to touch base later, or else it will have to wait until Monday.
I know it HAS to be that the Babs came back highly positive.
I remember being diagnosed with the Lyme and Bart. I was thrilled to know what was wrong after 17 years. Now, getting proper treatment has been another story!
Steph
-------------------- Learning to love, and loving to learn. Posts: 1318 | From Shohola, PA | Registered: Apr 2002
| IP: Logged |
WildCondor
Unregistered
posted
Hi Star,
I am really glad you got an answer. You have been suffering for so long. I bet treatment for babs will make s huge difference in your life. Make sure to stay on the treatment long enough 4-6 months and then some to make sure its gone. All the best!
IP: Logged |
Starphoenix
Frequent Contributor (1K+ posts)
Member # 2402
posted
Thanks, WC! I appreciate your kind words.
I never heard from the PA today. I guess I'll have to wait until Monday.
My husband was going on about how irresponsible it was for him to leave me hanging, even before we learned he wouldn't be calling tonight after all. I was defending the PA to the death. Hubby wondered why I was so, um, passionate about this. I said something like, "When you've been sick for 20 years, and you've seen so many doctors, and you're now on your sixth Lyme practitioner (for proper treatment, finally), and you know they can help you there, you want to believe in him! You don't want to entertain any negativity."
I feel like a teenager, waiting for a boy to call, checking to see if the phone is working....
Steph
-------------------- Learning to love, and loving to learn. Posts: 1318 | From Shohola, PA | Registered: Apr 2002
| IP: Logged |
posted
Hi! Can relate completely.It is such a relief when they actually find out what is wrong with you.Especially when you have known it all along.
Congrats and good luck.I was the same when I tested positive with lyme.I knew I had it but the tests kept coming back equivocal and I knew I had lyme,had bullseye rash big time etc etc.It does sound weird to anyone that hasn't been in this position.My doc was like preparing me for the worst when he told me and I was just thank god for that ,at least I know what is wrong.He may have thought I was a bit weird also.But such is life.
Take care,Sue from Downunder.
Posts: 801 | From Kiama,Australia | Registered: Dec 2002
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Congratulations on your positive Babs test, Steph. I hope treatment will fix you right up. I sure know what you mean about being happy over what doctors perceive as "bad" news.... When I got the call from my LLMD with CDC positive IGeneX results, all my office mates hovered in my doorway and listened in, then we all wept with joy....
"I DON'T HAVE MS!!!!!!"
So I can relate!
Good luck with treatment and hope you are feeling much better soon.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Don't forget to mix in artemisinin with that malarone. Babs bugs hate the art, works very well.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
| IP: Logged |
Starphoenix
Frequent Contributor (1K+ posts)
Member # 2402
posted
I love being part of this family on LymeNet!
I thought you might relate to my scenario.
I still haven't spoken to the PA yet. Oh, I want to add that when I got upset with hubby's criticisms (of the PA) yesterday, it was also because he kept saying that the reason for the call might not be a big deal after all. I so need to believe that it is! Plus, I do know that it is, because he doesn't make calls about results typically.
I will take Malarone first and then Artemesia. The good news is that even with a negative test, they would treat me, and until I'm better! What a concept.
Steph
-------------------- Learning to love, and loving to learn. Posts: 1318 | From Shohola, PA | Registered: Apr 2002
| 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!
![[Razz]](tongue.gif)
![[Smile]](smile.gif)
I prefer the latter. I'm SO sorry that your hubby is suffering like this. What I meant by intense nausea with rigors is I get severe nausea, to the point of vomiting, but not quite, usually in the middle of the night. I get it with rigors, violent shaking. I shake so severely, that my leg will come off of the floor!
![[group hug]](graemlins/grouphug.gif)
![[Wink]](wink.gif)
![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic