Hi - I'm New, Sick and depressed

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Lala429
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 4/29/2009 6:10 AM (GMT -6)   
I was initially diagnosed with Lyme in 2002 - I went on a powerful regime of oral abx and did very well and was in remission for many years.  My sx were mainly arthritic.

This past October my DH found a tick on my hip.  I never got the bulls eye rash and just to be on the safe side, doc put me on orals (amoxi and doxy).  Well, I got worse and then the neuro crap started setting in.  She did a CD57 and my level was a 19.  So in late February, I had a PICC line put in and I am on 2g Rocephin once a day.

Fast forward to now - I have been approved by my insurance (so far) to continue the Rochephin until late May (so I'll have 3 months under my belt - doc wants me on this for a minimum of 6 months but we'll have to see what insurance says).  I herxed terribly for the first month, which I totally expected, but now I'm just at a standstill.  No better, no worse.  So doc tested me for co-infections, all were negative, but she does not trust those tests, so she's adding doxy back in (oral - 400mg a day to start, then wants to get me up to 600).  She also repeated the CD57 - it dropped to a 15.  And my Vitamin D25 and D125 levels are way off - I cannot remember the numbers, but D25 is low, D125 is high.
 
I've doubled my CO-Q10, I take fish oil, diflucan (100 mg for two weeks, then two weeks off, then back on), my house looks like a pharmacy and I'm just so sick of this.  Today is my birthday, I have a grandson on the way in June, and I just feel useless.  I do work, but my work has slacked and thank god my bosses are realtively understanding.  I also take Xanax (have had GAD for years), Atenelol for my tachachardia(sp?), Aciphex, Acidophilus...let's see did I forget anything?
 
Nobody understands.  My DH tries, but gets very impatient with me.  I want him to see "Under Our Skin" but he always finds an excuse not to.  So I guess I'll watch it myself.  THen I got the "Lyme Disease Survivors Guide" and, while it has great info, my brain fog is so bad I can barely comprehand all of the stuff in there - much less try to even think of where to begin!  One thing I did get from that book was that, unless you have Lyme, you do not understand.  You can be empathetic and care, but you will never understand.
 
I feel alone.  I wear a piczee sleeve and everyone always asks "whats wrong with your arm?" then gotta go into the whole PICC line ting.
 
I guess I'm just having a "feeling sorry for myself day" - I normally go through life pretty well - I do sleep a lot, but I work, do some household stuff, manage the bills - anything to keep my brain working.
 
Thanks for listening and sorry this was so long...you guys probably think I should just go straight to the looney bin.
 
Lala
 
 
 
 

MarriedtoLymeinNJ
Regular Member


Date Joined Sep 2007
Total Posts : 273
   Posted 4/29/2009 6:43 AM (GMT -6)   
Hugs~~~
I can total relate to how you are feeling. I think all of here can. And if you need to be in the looney bin- my whole family does, even my MIL! LOL

I am glad that your dr is being so proactive and aggressive. The really good news is that you know that you can beat this- you did it before.
My family, thankfully (??) gets it since we all have it. (Blessings and curse!)
But many of my freinds are like your dh.

Glad you are here, you need to get it out, and not feel so alone.
Chris: Diagnosed Lyme, Chronic Mono
Married to Lyme in NJ aka Gary: Lyme, Bartonella
Mom to Scott: Lyme, Babesia, Bartonella
Mom to Caitlyn: Lyme, Bartonella
My Blog: http://faerywings.wordpress.com/


nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 4/29/2009 8:09 AM (GMT -6)   
I really feel for you and I totally understand! It sounds like you have a great doctor so you can take a breath of relief there.
With such a concerned and knowledgeable person helping you, I am sure you will recover again. It must be very frustrating and depressing to go through this twice.
It is wonderful that you are expecting a grandchild. Take care and keep coming back. If you belong in a looney bin, then we all do so this is the place to be.

dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 4/29/2009 8:46 AM (GMT -6)   

Hi Lala -

sorry to hear you have to go through all this the second time! Its good that you have a doc who understands what to do. As far as a looney bin is concerned - count me in! Why not have a nice place with nice people who know about lyme and support each other? I think we may open branches soon!!!

I hope you get better quickly! greetings, dorit


Lala429
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 4/29/2009 9:26 AM (GMT -6)   
Thanks everyone. Oh, I forgot to mention (brain fog at its finest) - my mom has chronic Lyme (since 1996) and she has been my saving grace. She does all of the research, found the doctor for me; she is the best. She's been feeling pretty decent lately but had a relapse due to some side effects from Nexium. Any little thing throws everything out of whack again.

Yes, I am grateful to have a proactive doc - she is being investigated (imagine that) and she said she'll relinquesh her license before she stops treating her Lyme patients. I just can't believe the political and other crap that goes with this.

So, any of you on a PICC? How long? Don't you love the showering limitations? Sponge bathe the arm...wear shower sleeve (with bunches of ACE bandages underneath so they catch any leaks)...what a blast.

I know what I'm doing is good for me and I hope to recover. There are just some days I want to just disappear (not kill myself...just go "poof") - I feel like a burden to my family...my DH...my 2 beautiful daughters, one about to give birth soon, the other just lost an ovary and has to go through IVF. It's so hard to even help emotionally because lately I've just been numb. Any of you go through that? Just flat emotionally?

Thanks again everyone - I think I'm gonna like it here!

Hugs,
Lala
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