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Posted 10/5/2011 6:27 PM (GMT 0)

I felt sooooo bad today that I went in for an emergency appointment at my LLMD's.  

My whole body hurts (muscles and joints)-- light headed-- stiff neck has switched sides-- and much more.  I'm just not getting past the mini-relapse/die-off that started last week.  

So I am now considering IV treatment.   

I am sick and tired of all this up and down stuff-- feeling fantastic for weeks at a stretch  only to go straight down hill, time after time after time.  

It looks like the Ceftin has obviously run its course.   

However, before I subject myself to the rigors of IV -- and the expense that my insurance co. won't cover (if they cover any of it)-- I am of the mind to test with IgeneX just as added incentive.  

It's not that I don't believe I have Lyme+co......it's that I want to KNOW.   This need to KNOW might sound silly....and in a way it is, because, I really am the Lyme 'poster child' (symptom wise) as many of us are. 

So the plan is:  I'm to drop the Ceftin and take Flagyl + Biaxin for one month.  Then...once I'm feeling better again (geared up so to speak) I will stop all ABX for 3 weeks (4 would be even better) and test with Igenex.

Once the test comes back positive....which I'm hoping it will (for the first time ever) I will then go on IV.

I just feel that with orals I am on the slow boat to China-- China being the destination of wellness.   So close but yet so far away. 

Maybe getting on the Concorde, which is IV............I will get better.

There are certainly no guarantees with IV....but having been on orals for nearly 11 months with no end in sight (IMO) is just too much for me to bear anymore.  I'm fed up and tired of fighting the good fight.  

If the IV doesn't work....then I'll cross that bridge when I get to it.  But at least I will have tried.  

Now I just have to tolerate the Flagyl!  Not looking forward to it....nor the relapse that I'm sure will occur once I go off ABX to prepare for the blood test.  

If the IgeneX test comes back with only my old friend--- band 41-- as positive......well.......then I won't know what to say, and will do whatever my LLMD thinks is best.   

  

 

 

Posted 10/5/2011 6:36 PM (GMT 0)
Well, Cat,

Sounds like you have a plan!! cool

Not easy choices to make, but you must feel better for having made a decision.

We're here for you! turn
Posted 10/5/2011 6:59 PM (GMT 0)
Ugh. I feel so bad for you. It is so hard making these decisions when you are feeling so bad. You have only had band 41 come up positive, but what about coinfections? Have you tried other antibiotics - bactrim, zithro, other combos?

I know you are sick of hearing this but maybe this was just your time to cycle and you had bacteria overload??

I did the same for a while - up and down, up and down, but seemed to have turned the corner. Don't know if it was a lifestyle change for me or what but something is working. HOpe you feel better.
Posted 10/5/2011 11:35 PM (GMT 0)
Maybe the Flagyl + Biaxin will make a big difference. So far all the other abx combos I've tried have made ' a big difference'.......but only for a while.

However, I must say in their defence, that many symptoms I've had in the past have NEVER returned, which is GREAT.....but the naggers always manage to come back.

I tested negative for all co-infections.....but not through IgeneX. This blood test coming up will be my first with this lab. Ever hopeful for something to show up--- finally.

The bacteria overload idea is possible....but after 11 months of super high ABX doses and combos I really thought I was past this kind of thing. I don't know what to think.

Maybe I just ate too many cookies this week! I admit I've been very lazy about sugar intake lately. But still ! LOL If this was just about sugar I'll really be kicking myself !!
Posted 10/6/2011 4:03 PM (GMT 0)
Such news! I am so sorry Cat!!

Well I would say that now would be the time to have a really hard look at what you have and haven't been doing, eating, drinking, etc. - before you subject your self to all of that.

Should you decide to go through with the IV's - As Achievinggrace said - we're here for you!!! You are one tough cookie, and I believe that once you set your mind on doing something, you will get through the whole thing - but just make sure you really need to do this.
Posted 10/6/2011 7:53 PM (GMT 0)
I'm still mulling this whole thing over....it is a BIG decison and not without a fear factor of the ultimate relapse.

But I have some time to decide.....and....I have a feeling that if the Flagyl + Biaxin do wonders, I just might stay on that for a bit and see where it takes me.

Watching my brother-in-law's progress with the IV he's now on, will also help me to decide.

As for how I feel today.....I'd say I'm a lot better.....the mini relapse I just went through is passing. Bright eyed and busy tailed (almost) once again.

Played tennis today too! I'm going to start the Flagyl + Biaxin next week----currently pushing on with the Ceftin until then.

And no more sugar !!!!!!!!

Love you guys !!!!! :::))))))
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