Tindamax & Armageddon

[Iowadawn]

OK, all you cyst(ers)!! I am expecting Tindamax to be added to Evan's mix this week when we go to LLMD for 8 wk check. Will all blankety-blank break out we we start busting up cysts? This last week was much improved (this weekend has been yuck, but I'm ready to throw everyone out the door )

 

Just curious so I can brace.

 

Dawn

[sf_mom]

YOU HAD TO ASK!!!!!!!!!!!!!!!!!!!!!

 

Being on 1500 m.g. myself daily since last Thursday............ I'm feeling energized and willing to pick a fight all at the same time. I don't know if I am coming or going. I want to laugh and enjoy the day and then cry 15 minutes later. I'm frantically cleaning the house while needing to just sit down.

 

I am just hoping it settles soon. I definitely feel 'other than myself'.

 

As you know there are two schools of thought: HIT IT HARD AND POWER THROUGH or LOW AND SLOW. I guess my Dr. felt I could handle it but let's just hope I'm still married by the time I'm done with the TINDAMAX!

 

Oh.. and all the aches and pains are back, stabbing pains that can wake me in the middle of the night and headaches. You need to manage the symptoms when necessary with MOTRIN.

 

So glad to hear Evan is doing better and the trend is toward improvement. Expect it to continue minus the herxing episodes that include antibiotic changes and CYST BUSTING!!!

Edited November 15, 2010 by SF Mom

[lyme_mom]

You guys crack me up. Tindamax and Armageddon. Wendy hang in there. I remember being very short tempered on flagyl -it stresses you a lot. Patty

[Iowadawn]

I just envision the Bb cysts,all happy and snug throughout the body, all of a sudden screaming: " Holy Blankety---Incoming!!!!" KABOOM! KABOOM! eeeeeeeeBOOM! --A Pearl Harbor type of event with a Nagasachi fallout.

 

I can't say I got a warm and fuzzy feeling from your posts, Wendy & lyme mom.

[sf_mom]

Internal WAR!!!!!!!! This too shall pass.

 

If you could only imagine.... all three of my kids and myself are on cyst buster's. MY POOR HUSBAND..... our 30 pound three year old daughter threw the BIGGEST hiss fit 'borderline rage' when he turned off the TV tonight.

 

I like to think of us as the 'FUNS' as in FUN FAMILY. Note there are glimmer's of true healing in all this which gives me confidence to keep pressing forward.

Edited November 15, 2010 by SF Mom

[NancyD]

Armageddon is right!!!!!! How long can I expect DD to be on this nasty stuff??? Please tell me it won't be long! We are doing it the HIT IT HARD AND POWER THROUGH way. Wendy, my sympathy goes to your husband!!

 

Nancy

[Iowadawn]

Internal WAR!!!!!!!! This too shall pass.

 

If you could only imagine.... all three of my kids and myself are on cyst buster's. MY POOR HUSBAND..... our 30 pound three year old daughter threw the BIGGEST hiss fit 'borderline rage' when he turned off the TV tonight.

 

I like to think of us as the 'FUNS' as in FUN FAMILY. Note there are glimmer's of true healing in all this which gives me confidence to keep pressing forward.

 

 

 

This will probably be what it is like here--suspecting we all are positive. No 30 pounders here, though (2- 130# & a 90!) I am holding off in order to get my boy through the worst. He can get way to violent. I am going to ask our LLMD if he will fax our GP so we can get my oldest I HIGHLY suspect is positive, so we can start her and then get the results of the IGenex & I can get her an appt. Will see him Tues.

 

May need a cyber-drink with you all before this is over-and I don't drink alcohol except on rare occasions-so you know it's bad!!

 

Dawn

[cobbiemommy]

DS was very cranky, sore and tired on Flagyl, which I believe works very much the same way. Thanks for the laughs, I needed those!

Cobbie

[MichaelTampa]

Interesting, when on IV abx, I went two weeks on tindamax, then two weeks on alinia, and back and forth, with IV abx all the while.

 

Last 4 weeks, I've been on factive (a quinolone similar to levaquin) and tindamax, every day.

 

And, I have not had the experience of being extra on edge or anything like that from tindamax. I have just occasionally had headaches or been extra tired, don't know if that's the tindamax or the abx. The only thing I've noticed that I knew was from tindamax was, with the IV abx, I would slowly get very dehydrated during the two weeks on tindamax, then it would slowly rehydrate on the alinia (meaning off tindamax), and back and forth, so I really feel like it was the tindamax causing that.

 

The herxing can vary person to person.

[NancyD]

May need a cyber-drink with you all before this is over-and I don't drink alcohol except on rare occasions-so you know it's bad!!

 

Dawn

 

After Tindamax I'm going to need more than a few drinks!! So my DD14 stayed home sick today while I went for my laser eye surgery. Forget what I said yesterday about her being responsible. While I was gone she dyed her hair black. She bought it behind my back at the drugstore yesterday (only minutes after I told her ABSOLUTELY NO!). She had the most beautiful auburn hair and now it's shoe leather black!!! And it's permanent color. I just want to cry!

 

I guess it's not as bad as when she pierced her lip with a needle (no ice or alcohol wipe) in May during a severe exacerbation. That was one day before she threatened to kill me and was hospitalized for two weeks. Please tell me I will make it through this...

Edited November 16, 2010 by NancyD

[sf_mom]

Geez Nancy.... I know its rough right now but I DO KNOW YOUR DAUGHTERs pain due to the tindamax!!!!!!!!! I say do anything to survive... one day, she'll grow up and never remember this and only know the loving mother you are.

 

Hang in there.

[NancyD]

Oh, I do know that. I'm pretty resilient, though some days really push me to the edge. It was just so nice going 5 months with no threats, no rages, no mouthing off, no sneaking, and no lies. I miss my sweet girl!

 

Geez Nancy.... I know its rough right now but I DO KNOW YOUR DAUGHTERs pain due to the tindamax!!!!!!!!! I say do anything to survive... one day, she'll grow up and never remember this and only know the loving mother you are.

 

Hang in there.

[Iowadawn]

Back from the Lyme 8 week appt. We escaped the excitement of Tindamax for another month. We just started another month of Mepron. He gave us the option of starting Tindamax or waiting until the next appt in 4 weeks. I chose to wait for a couple reasons: we are seeing some good behavioral, mood, etc. etc. after a spiral that had Evan in the hospital more than out since late Sept. He is wanting to read again & be read to and is halfway through "WHere the Red Fern Grows"--and we read out loud. He has been much more flexible & has dealt w/ disappointments in a manageable way. The behavior yuck (violent/aggressive) bumps have been shorter duration & less intense. The smiling & laughing is so good to see. I felt we needed to keep him moving in this direction a bit longer before we change things up with the addition of Tindamax. The Mepron has physically slowed him down again(less stamina) and he seems feel & hurt more again. So until after Christmas--No Tindamax. Dang BCBS is dragging their feet on IVIG approval. We have a variety of people on their case. Evan has quite the "record" now for them to see, so I am figuring they are digging. Any BCBS IVIG approvals out there with 279.49 approval (auto immune disease NOS)? Please PM me.

 

Finally rec'd IGeneX test kits for the 3 others on the family. Off to the doc for blood draws Monday. Will have her run strep as well on everyone while they are poking.

 

Dawn

[PacificMama]

Hi Dawn,

 

Glad you are seeing improvement in your son, and hope that continues upward and onward for you.

And good luck with the testing on the rest of your family. It may feel overwhelming to be considering it on a family level, but it's better to know than not know.

 

Mary

[sf_mom]

Dawn: I love the update of progress... plus, getting more herxing behind you is a good thing. As you know, I am not worried about those IVIG treatments for Evan. I suspect by the time you get approval he'll have made such good progress you'll wonder if its even necessary.

 

Our youngest son is making huge strides with the Babesia treatment and hasn't had a rage in 11 days!!!!!!!!!!! From what I understand our Dr. treats babesia hard for four months, retests and then if still positive treats for another 10 months.

 

As for the Tindamax.... its been rough (I think you posted when I was at my worst) but when I'm feeling good its better than I have felt in years. Who knew I was living in such a fog.