This is topic It's Official!- Pos Test for Babs & I'm gonna get treated!- Any Advice??Please! in forum Medical Questions at LymeNet Flash.


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Posted by AliG (Member # 9734) on :
 
My test shows a "spring-time infection". (I don't have copies yet, I'll give any further details when I get them.)

TAKE THAT YOU STUPID ID QUACK!!!!!!!!

Another one bested by a LLMD! Oh yeah! Oh Yeah!

Yay me! It's not all in my head!
There may be other things wrong in there, like that I'm happy to hear I really have a nasty disease, but at least the sickness is not a "haywire inflamatory response to the killing off of the Lyme bacteria"!

I start Mepron/Zithro in am. Any advice would be greatly appreciated!


Ali
 

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Posted by Vermont_Lymie (Member # 9780) on :
 
Congratulations on having a clear diagnosis!


The lack of one has been a devil that has plagued many of us.

Looking forward to hearing of your recovery.
 

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Posted by AliG (Member # 9734) on :
 
I'm so sorry, Vermont!

I don't know if it made a difference, but this time when I got tested I was 1 week on Doxy and in full-blown brain fog. Maybe that's the time to go?

Thanks for being happy for me!

Ali
 

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Posted by Lymetoo (Member # 743) on :
 

quote:

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Originally posted by AliG:
Yay me! It's not all in my head!
Ali

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Are you SURE???? I really had decided you were completely nuts!!

Welcome, as a REAL Lymie!!
 

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Posted by AliG (Member # 9734) on :
 
I am, but that's beside the point!
 

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Posted by savebabe (Member # 9847) on :
 
Good luck with treatment!

Make sure you eat foods high in fat to maximize absorption.
 

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Posted by MarsyNY (Member # 7766) on :
 
Is that anything like Springime in Paris?
 

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Posted by AliG (Member # 9734) on :
 
Thanks Savebabe!

I'll have to make sure I write that on my list. (otherwise I might forget it)*


As for you Marsy,
I doubt it, but I hear they don't like us foreigners, so maybe?


*Speaking of forgetting things..................

This momentous occasion would not be possible if it weren't for the help of all you wonderful people!

My PCP would have still had me running to the Reumatologist and ID and who knows who else. I'm so glad I listened to your great advice.

From the bottom of my TBD infested heart, I thank you all!!!!



Ali

 

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Posted by Michelle M (Member # 7200) on :
 
Congrats on having a clear diagnosis. A pox on your past ducks!

Your Mepron/Zith will work better with the addition of Artemisinin. Check it out.

Big gob o'peanut butter will suffice for your "fatty food" to take with your Mepron, iff'n nuthin else is handy.

Don't be surprised if it throws you for a loop for a while. Though technically it's not s'posed to cause a herx, it is known for kickin yer butt good for a while. Don't let that make you give it up.

Hang in there!

Michelle
 

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Posted by HEATHERKISS (Member # 6789) on :
 
Congrats!

So you'll be drinking the yellow gold. Yippee! Mepron, biaxin and artiminsin really helped with the brain fog and constant fatigue.

I hope it does the same for you.

Love and healing
 

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Posted by jif (Member # 9215) on :
 
I know some folks, myself included had some deppresive episodes on the mepron, now that I am done (I hope forever), i'm less inclinded to think the emotional stuff was a herx and believe it was more of a side effect for me.

so, keep this in mind in making plans. for example would not do business travel or family reunions. for me it came on big btwn 3-6 weeks and unfortuantely the timing was poor and it was hard on me and my family. after that time, things leveled out but my head feels much better OFF the stuff. (I wish my doc. had told me of this potential because my son was home for the summer and i had not set up camps or much time with playmates thinking this would be great time for the two of us to do fun things.... would have set up camps and childcare had i known, or even put off until fall, so you get the idea.....)

but clearly some don't have these problems but something to watch for

if you are on the low sugar diet, you may start to crave the chalky sweetness of the yellow gold--

best of luck
p.s.
me and another friend from lymenet started to call it Zepron, and living in the land of zepron
 

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Posted by MarsyNY (Member # 7766) on :
 
AliG,

Certainly nothing like Springtime in Paris! I had
been wondering why the lab calls this very serious TBD a "spring-time infection"


It is a big deal to finally get this diagnosis
I'd be skipping to the pharmacy.
 

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Posted by liz28 (Member # 4946) on :
 
Try one course of Nivaquine chloroquine just to see if there is an effect. It only takes three days, and costs about $25.

Day 1 300mg twice a day
Day 2 300mg once a day
Day 3 300mg once a day

I ended up taking three courses, spaced a minimum of one week apart. Primaquine was part of the treatment, too, but for now it might be interesting to just see if this helps.
 

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Posted by humanbeing (Member # 8572) on :
 
Which lab did you get the diagnosis from? I used Igenex and all neg on Babs PCR and WB...

Still wonder if I got it anyway...

Good luck with your treatment keep us posted!
 

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Posted by Lymetoo (Member # 743) on :
 

quote:

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Originally posted by MarsyNY:
I had
been wondering why the lab calls this very serious TBD a "spring-time infection"

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quote:

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Originally posted by Michelle M:
Your Mepron/Zith will work better with the addition of Artemisinin. Check it out.

Big gob o'peanut butter will suffice for your "fatty food" to take with your Mepron, iff'n nuthin else is handy.

Don't be surprised if it throws you for a loop for a while. Though technically it's not s'posed to cause a herx, it is known for kickin yer butt good for a while. Don't let that make you give it up.

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Thanks Michelle!

I've been looking all over for the Art. The health food store special ordered it for me. it should be in today. (I hope )

The peanut butter tip was priceless! The pharmacist said 24 grams of fat. That's really hard to do when you have no appetite.

As for the but kicking, is it kinda like this ?

I thought it would be good timing because my daughter was going back to school. Ha!Ha!....Wrong!

I forgot about trying to get her up, washed, fed, packed and out for the bus on time. The homework and 9 million papers to read, sign, etc. from the teacher, PTA, Principal doesn't help either.

Right now, I just seem to wish this was me all the time.

Thanks again for your great advice!

Ali
 

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Posted by AliG (Member # 9734) on :
 
Heather & Jif,

Thanks so much for your support!


Ali
 

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Posted by AliG (Member # 9734) on :
 
This is for Marsy and TuTu,

quote:

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Originally posted by MarsyNY:

Certainly nothing like Springtime in Paris! I had
been wondering why the lab calls this very serious TBD a "spring-time infection"

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I couldn't imagine why you had said that..LOL ! Now that I realize how bizarre my statement was, please allow me to clarify...

I had 2 tick bites in April. Tested IGG pos by Quest for "past" infection. Was sent to ID, who sent me for smears & cultures (Quest again). He told me "no current infection". I was unsure if "past" infection would have been from an illness 18 yrs ago.

I pointed out that, according to Quest, the smears can only accurately rule out active infection if done every six hours for 36 hours. IDduck didn't want to hear that. I heard more "blah!Blah!Blah!".

I told IDduck I was still ill, he said I "didn't look very sick", I would look "much sicker". (Has anyone here heard that before??) I went to LLMD.

I had very severe brain fog for my appointment (got lost a couple of times on the way there & everything). LLMD took lots of blood. I'm not sure what tests he ordered or from where. I forgot to ask.

The nurse called me with the results and told me Dr. said I do have active Babesiosis and it was likely a "spring-time infection". (Meaning I was infected during the recent tick bites and not during the past illness.)

I hope that clears things up. I'm sorry for the confusion.
Thanks for your support!

Ali
 

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Posted by AliG (Member # 9734) on :
 

quote:

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Originally posted by liz28:
Try one course of Nivaquine chloroquine just to see if there is an effect. It only takes three days, and costs about $25.

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Thanks for the treatment info Liz. I thought treatments were either Chloroquine/Quinine or Azythromycin/Atovaquone. I've also heard about combining Artemisinin. I haven't heard about Chlor/Azyth/Atov.

I thought the reason for Azyth/Atov was less side effects. Is it the Quinine that causes the side effects? Do you know if others have used Chloroquine with Azythromycin and Atovaquone?

Thanks again for the info!


Ali

[ 15. September 2006, 01:58 PM: Message edited by: AliG ]
 

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Posted by AliG (Member # 9734) on :
 

quote:

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Originally posted by groovy2:

Make sure you take mepron with greasy food
bacon -sausage -hamburger ect--

animal fat seems to work best--

Also take Artemisinin -its important

--Jay--

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Thanks Jay!

Ick, grease for breakfast. The Pharmacist told me 24 grams of fat. That's like 12 slices of bacon. I used to be able to do that with ease, in my younger days. Now it makes me nauseous.

I managed to get down a bowl of pastina today with a couple of Tbsp. of butter. i'll probably just get used to eating all the fat again, when it's time to stop.

As for the Art, I'm working on finding it.

Thanks again!

Ali

[ 15. September 2006, 01:59 PM: Message edited by: AliG ]
 

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