Time to fill you all in......

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Gretchen P
Veteran Member


Date Joined Sep 2005
Total Posts : 1784
   Posted 1/8/2009 7:03 PM (GMT -7)   
      Ok so I have been away for it seems like a year! I have been maintaining my health STILL with the help of abx, everytime I try and wean off I crash. I am getting pretty sick of Biaxin being my best friend. But I function at 90-95% so I guess I can not complain until the insurance decides to cut my umbilical cord.
       Alyssa is doing well, school has mostly been getting easier for her she has not even used her 504 this year even though math is still a struggle. She still sees Dr J every 3-4 months and we love making a weekend of it by going into the Big Apple!
       Now for the bad news................Hubby injured his shoulder at work and dx with tendonitis, same dx I had from a rhuemy 5 yrs ago, which I now know is BS! Soooooooo knowing what I know I decided it was time to challenge him with abx. Well we gave him 1000mg extended release Biaxin (because I love it so much) at 6PM and by 2AM he was BEGGING me to take him to the ER becuase of EXTREME pain in his feet and shoulder. I calmed him down saying we would go in the morning so we would not have to deal with all the drunks and the idiot doctors who do not believe in lyme while I was drunk LOL(I had just gotten home from a party). So Sun AM he felt a wee bit better and we had him take Biaxin again(in case you missed it, I love Biaxin)and once again by 2AM he was BEGGING me to take him to the ER. I persueded him to wait until morning to see family dr as he is somewhat lyme friendly,even though I have been telling him the past 2 yrs he has been treating hubby's depression and strange pains that hubby has lyme! So called PCP Mon morning to find out he is not in!!!!!!! So finally Tues we get into see him and he looks at him in true shock at his condition, you see the dr had seen him 2 weeks prior for a flu shot and 6 mos check up.He started telling us statistically this time of year it is viral blah, blah, blah... But he did agree with the lyme abx challenge and possible herx even though he had no clue what a herx was.....oh but of course I had a print out ready for him!!So anyways he ordered bloodwork, the usual CBC and stuff and asked me what he should order for the lyme and I told him a Western Blot thank you very much. So anyways...............vicodin is not helping at this point, go to the ER 2 times this week and get more Vicodin because what the heck else are we gonna do? Family doc asked me to call my llmd to see if he could see him sooner than Jan 7th, mind you this all began on Nov 27th. Llmd got him in within the week probably because he LOVEs me as I refer more work to him than an insurance company will EVER! So we get there and he looks at his labs and gasps! His SED rate(rate of inflammation) was at 114 with normal being 0-15!!!! So at this point he says we have to get the inflammation down with huge taper dose of prednisone even though it is bad for lyme but he wil have an abx to counter that, continue vicodin and add oxcycontin to the mix! So he says he could have Rheumatic fever, lyme or auto immune disorder!Well we found out last week hubby lit up on the ELISA!!!! So here we are 3 people deep into lymeland!! Hubby is improving slowly, he has been off of work since that dreaded day and still gets wiped out easily.
      So enough about me, how are you doing? Fill me in, especially you oldies out there! Peace!
I'm gonna get that Lyme!!!!!!!!!!!
~~~~~~~~~~~~~~~~~~~~
 
I have lyme and I've got the papers to prove it!! Take that Wormser!
 
Wormser, who is that????? OHHHHHHH that's right he USED to be on the IDSA panel!!!


Dan's Mother
Regular Member


Date Joined Feb 2007
Total Posts : 189
   Posted 1/10/2009 4:02 PM (GMT -7)   

Hey Gretchen!

So glad to hear that you and Alyssa are doing so well!  Sorry to hear about your husband, but then you always said you thought he had it as well.  I know what you mean about your new best friend, mine is omnicef -- it keeps me functioning. 

Dan had a relapse in September and has never really gotten back all the ground he lost.  Seizures have been getting worse along with the fatigue.  Last week, we ended up in the dreaded ER - he had severe stomach pains.  It was so bad that he asked to go to the hospital!  The ER docs said it was gastritis and gave him maalox mixed with donatel.  So far, he hasn't had any more pain, but he is on a very blan diet along with gluten-free, wheat-free, sugar-free.  That doesn't leave him much to eat. He also has low IgG, IgM and we are looking to get him on IVIG. 

We've also changed doctors.  Because of his seizures, we decided to see Dr. K in CT.  We left his office feeling more hopeful than we have in a long time.  Dr. K was able to find things on Dan's MRI that other docs had missed.

Any chance of Lymeapalooza III this spring?

Take Care,

Karen


teenLymer
Regular Member


Date Joined Dec 2006
Total Posts : 186
   Posted 1/10/2009 11:39 PM (GMT -7)   

Hey Gretchen---so good to hear that you and Alyssa are doing better!  But what a bummer about your hubby.  My mom thinks my dad has Lyme too, it just hasn't made his health go downhill yet.  He's still a "healthy lymie".  Does Alyssa have a FB?  I know you do cause i've already "friended" you. And Gracie's Mom's right about you having some uncanny lyme radar gift.

Dan's Mother---Oh, i'm so sorry to hear about Dan having a relapse!  Sounds like he's one tough cookie, though, like Gracie, when it comes to dealing with seizures and such.  Oh, the dreaded ER.  about once a year for the past couple years i've had to go to the ER for severe stomach/intestinal pain.  Everytime, the docs do all the normal tests and such and never find anything out of the ordinary.  My blood work, urine, everything comes back negative for ecoli, salmonalla, etc.  Yet I'm in severe pain.  So they just shuffle me away, label it "gastroenteritis" and send me home w/pain meds.
 
Tell Dan he's not alone when it comes to boring diets.  My diet: no gluten, no wheat, no refined sugar, no dairy, no eggs, no soy.  Talk about having no variety of food.  But, if his gluten intolerance continues, email me and i can tell you about foods and some fabulous cookies that taste great that are free of all the things listed above.
 
Glad your new doc is giving you hope.
 
If there is a Lymeapalooza III this spring, I really, really want to go.  So much so I think i'll start "sweet talkin" my mom now, so that by the time spring comes around, she might be up to the idea of flying over there.
 

Gretchen P
Veteran Member


Date Joined Sep 2005
Total Posts : 1784
   Posted 1/11/2009 10:15 AM (GMT -7)   

Karen,

Hey nice to see your post. I am so sorry Dan has gone downhill, that is when this diseases really makes me mad. Alyssa has had bouts of stomach pain with unknown cause also, we were in the ER for it last year, very scary! Sounds like maybe Dan needs to see the OMD that Gracie went to in Maryland. She really helped her out with seizures and eating issues. The next time ALyssa and I are in NYC will be April and she is bringing a friend with her, so I do not think that will be a good time for Lymeapalooza due to freaking her friend out LOL.Maybe when we go back around August? I hope Dan gets some improvement soon.

teenlymer,

Thank you for your response, tell Mom to keep after dad and read my huby's story here on HW. Yes Alyssa does have FB you can access her through mine or even gracie's to friend her. But I will tell you ahead of time she is not the freaky lymie like all of us here are wanting to talk about it!!! Take care of yourself and happy healing! Peace!


I'm gonna get that Lyme!!!!!!!!!!!
~~~~~~~~~~~~~~~~~~~~
 
I have lyme and I've got the papers to prove it!! Take that Wormser!
 
Wormser, who is that????? OHHHHHHH that's right he USED to be on the IDSA panel!!!


phsinvent
Veteran Member


Date Joined Aug 2006
Total Posts : 1155
   Posted 1/11/2009 1:01 PM (GMT -7)   

Hope you guys all come out victorious in the end. I remember when we used to joke about your husband having it also. You would tell me how he poo pooed you when you tried to open his eyes to the strange symptoms he had. He just kept saying it was old age. And I even remember how we talked about a biaxin challenge(oh yes, biaxin was my best friend too). Loved that stuff once i got over the first month or two of herxing on it.

Despite all the on-going controversy about sexual transmission, stories like this are becoming all too popular lately. You are not the only one. I have a growing list of couples that have positive lyme titers. And in most of the cases, one or the other never goes into the woods or the weeds. Not saying that it is spread this way but when i go into detective mode, i can note that something odd is going on. Too much co-incidence.


Gretchen P
Veteran Member


Date Joined Sep 2005
Total Posts : 1784
   Posted 1/11/2009 1:38 PM (GMT -7)   
Whoever said we weren't rolling around in the weeds? devil
I'm gonna get that Lyme!!!!!!!!!!!
~~~~~~~~~~~~~~~~~~~~
 
I have lyme and I've got the papers to prove it!! Take that Wormser!
 
Wormser, who is that????? OHHHHHHH that's right he USED to be on the IDSA panel!!!


sojourner
Veteran Member


Date Joined Apr 2006
Total Posts : 1173
   Posted 1/11/2009 8:50 PM (GMT -7)   

Hello dear ones.

It feels a tad like old home week goin' on here.  Doesn't it strike you odd that such horrific circumstances brought us together? Or are we just so very grateful that we were brought together in the midst of it all?  I know that we are.

Gretch - I am sorry that c. went through so much.  I only know to be grateful that you know what you know and took the right steps to bring about the answer he needed.  I am grateful for your LLMDs intervention and knowing that he is on his way now.  I believe that makes you his heroine!  It was nice 'chatting' w/you the other night.  I pray that your family just gets better and better, in all ways!  You are very, very dear to us.  And we miss you much!  Thanks for sharing an update.  Your humor comes through no matter how hard the test.  I have always appreciated that about you.

Karen - I am so sorry that we have not spoken for too long now.  It was hard to hear that Dan is having such a difficult time since we saw you.  I had thought he was doing better.  I am so sad and will share w/Heth after this note.  Please give Dan our love and always, to you, Karen.  I am thankful that you have a doctor that you have confidence in and hope for the days ahead for Dan.  It makes all the difference, doesn't it?  I am not sure who you are referring to.  Is that Dr. S.K?  In C. CT?  Or another perhaps?  Hope to talk with you soon.  Please take care.  You are a wonderful, wonderful mom. 

physinvent - noteworthy thoughts on xmission.  ongoing emerging science will soon tell all.  always appreciate ur thoughts.

Blessings,  Sojourner


"God loves with a great love the man whose heart is bursting with a passion for the impossible." ~booth

www.stylebyheatherrose.com -click "Lyme testimony" and "Lyme Disease" for a panoramic view of the truth.  Lyme disease - coming to a tick near you!


Gretchen P
Veteran Member


Date Joined Sep 2005
Total Posts : 1784
   Posted 1/14/2009 7:05 PM (GMT -7)   
Hello sojourner,
    As always nice to see you here and there!Wish it were face to face! Someday Lymeapalooza will bring us all together again! Thank you fo your kind words and prayers...we appreciate all that you do for us amd all lymies! Love and miss you all!!!
I'm gonna get that Lyme!!!!!!!!!!!
~~~~~~~~~~~~~~~~~~~~
 
I have lyme and I've got the papers to prove it!! Take that Wormser!
 
Wormser, who is that????? OHHHHHHH that's right he USED to be on the IDSA panel!!!


Tallison
Regular Member


Date Joined Jun 2007
Total Posts : 417
   Posted 1/15/2009 9:28 PM (GMT -7)   
Hi former lymapalooza's (and future ones)... I too, feel badly that I haven't logged on in a while.  I am sorry to hear about your husband, Gretchen, but glad there has been movement toward treatment.  So impressed with how you handled it! 
 
Question for everyone- when you ask a reg doc to run a western blot, do you ask for a certain lab?   Stonybrook? LabCorp?
 
Karen, I have been wondering how Dan has been doing.  Please give him a hug for me.  I am hoping/praying that the new doc will help. 
Please keep me informed.
 
A little update from my end.  Karen, I remember talking with you about the fact that Dr.P told both Dan and I to go off of sugar.  Turns out I am severely hypoglycemic (did a 5hr glucose tolerance test), and as a result I started taking Glyset with my meals.  Now, when I have my predominant symptom (parch waking), it is not followed with the jitters and rapid heartbeat.  I still have halfway to go though.  Now that there is less to deal with, I figured two things out: one is that if I sit upright after the parch waking, it takes 7 seconds for my throat to unstick and for my saliva to get working again.  The second thing (probably was always there but didn't notice) is that when it happens, I feel this weird achiness on the crown of my head.  Like a mild headache, but always in a certain area.  I am thinking now that I might need to find a lyme literate neurologist.  I have asked my docs about this before, they said it wasn't necessary.
 
Diana, how are you guys doing?
Miss you all,
Tracy

stutterbug
Regular Member


Date Joined Jul 2007
Total Posts : 478
   Posted 1/16/2009 10:43 AM (GMT -7)   
Gretchen, Hi. One of my worst and on going symptoms is tendonitis. It has been going on over 4 years of chronic pain. At one point I was unable to use my arms for a very long time. I am STILL struggeling with this everyday. Do y9ou know of anything that help? thanks, amey

Gretchen P
Veteran Member


Date Joined Sep 2005
Total Posts : 1784
   Posted 1/16/2009 6:36 PM (GMT -7)   
stutterbug
   Are you currently on treatment?If so what are you on?
I'm gonna get that Lyme!!!!!!!!!!!
~~~~~~~~~~~~~~~~~~~~
 
I have lyme and I've got the papers to prove it!! Take that Wormser!
 
Wormser, who is that????? OHHHHHHH that's right he USED to be on the IDSA panel!!!


sojourner
Veteran Member


Date Joined Apr 2006
Total Posts : 1173
   Posted 1/17/2009 1:16 AM (GMT -7)   

Tracy! 

Don't like hearing that things have been roller coastering.  But, very glad to see that you are seeing changes in a good way.  Do you feel you are in the right place with your overall protocol and treatment?

When r u coming to S.CentralPA?

We'll keep the light on.

Blessings, Sojourner

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