LymeNet Flash: Offline 3 Months -- Hubby wants to know -- How you all doing?

This is topic Offline 3 Months -- Hubby wants to know -- How you all doing? in forum Medical Questions at LymeNet Flash.

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Posted by seibertneurolyme (Member # 6416) on :

Took some time off -- did not read or post to LymeNet for last 3 months. Just needed a break.

Hubby is having a bad year -- 5 hospitalizations so far and I have lost count of the number of ER visits.

A 2nd Fry lab bloodslide says the Babesia is gone -- about the only good news -- not sure if I believe test results -- will wait and see.

Finally got approval for SPECT scan from Columbia. 6/25/07 report says "Mild to moderate global, cortical hypoperfusion with heterogeneity. This perfusion pattern is consistent with encephalitis or vasculitis, such as from infections e.g. lyme disease, autoimmune causes or secondary to some medications."

And this was when hubby was actually feeling pretty good!!!

6 weeks of IV Primaxin -- even at the therapeutic dose -- was no cure all for the Lyme. Some improvement in some symptoms only. Did Primaxin a couple of years ago and was hoping for repeat experience.

3 days of Bart meds resulted in return of gastritis/duodenitis and low back pain.

Feel like we have gone back in time to about 6 or 7 years ago when hubby first got sick. Losing weight and couldn't eat or exercise. But now instead of tremors he has muscle rigors.

Have some weird bloodwork results I will post in another thread.

Would love to hear some success stories. Surely someone feels like they are getting better! Regardless, check in and let me know how you are doing.

Seems like there are a lot of new faces on here.

Bea Seibert

Posted by Parisa (Member # 10526) on :

Glad to hear you're still hanging in there!

Posted by Lymetoo (Member # 743) on :

I'm so glad you have checked in with us, Bea!! I've been worried about you two!!

I'm still doing very well... but wish it were the same for your husband. TELL HIM HELLO FOR ME!!!! [hi]

Tell him he's my hero! [group hug]

oh....and

YOU are too!!!!

Posted by oxygenbabe (Member # 5831) on :

PM barksplinter. His wife was 95% bedridden and nothing was working. Microdose rocephin (50 grams a day) has brought her out of it. She's much improved after 5 months.

Posted by timaca (Member # 6911) on :

Hi Bea~ I've missed you and wondered how your hubby was doing.

My story has taken an interesting turn...please go to www.hhv-6foundation.org. Click on "patients" then click on HHV-6 testing. Read "My viral Test results" by Timaca.

I know you had your hubby on some antivirals didn't you?

Timaca

Posted by hiker53 (Member # 6046) on :

I will continue to pray for your husband. I am doing much better thanks to bioresonance laser therapy and a year off work. I have returned to teaching and while it is tiring I am loving it.

I have added two supplements that seem to help--Stem Enhance and zeolites. I am actually down to 10 supplements a day. For the average person that seems high, but for someone with Lyme I think it seems low. My muscle tics are gone, my tingling is gone. Just some myoclonus, imbalance, sensitivity to noise and crowds, and some fatigue remain.

I remain confident that I and many of us here will be healed with God's grace. Blessings.

Hiker53

Posted by luvs2ride (Member # 8090) on :

Hi Bea,

Good to hear from you.

I am doing very well. At this point, I believe I am in remission but too soon for me to be sure about it.

I do continue in treatment.

About your hubby feeling like he did 5 or 6 yrs ago. In natural medicine, as the body heals, it goes backward through each illness experienced in the past. It does this as it clears the illness from the body. I'm not sure this is what is happening to your fella, but maybe it is.

Good thought to hold onto.

Prayers and best wishes for you both.

Luvs

Posted by sometimesdilly (Member # 9982) on :

Hi Bea!

It is so good to hear from you!

I missed you here, and have been hoping for the best for both you and that husband of yours to whom you provide such heroically good care.

I can't tell you a good success story, more's the pity, but i can pass along great big hugs and warm healing hopes to you both.

welcome back- dilly

Posted by heiwalove (Member # 6467) on :

hi bea.

i just want to send you & your hubby love and say i'm amazed & awed by you, and everyone else who posts & researches here in support of a loved one with lyme.

my mother doesn't even know what babesia is, and she has no desire to learn.

you are wonderful. your husband is so blessed to have you.

lots of hugs,
heather.

Posted by bettyg (Member # 6147) on :

quote:
Originally posted by Lymetoo:

I'm so glad you have checked in with us, Bea!! I've been worried about you two!!

TELL HIM HELLO FOR ME!!!!

Tell him he's my hero! oh....and YOU are too!!!!

Posted by 5dana8 (Member # 7935) on :

Hi bea [hi]

wow, I have been thinking about you this week & wondering how you & hubby are. I have missed you [kiss]

My stomach is finally getting better & have had some really good weeks. Mostly doing rife & supps. Have also done some anti-fungals, sporanox & diflcan that seemed to help alot.

I hope the best for you & your hubby & pray he can find some relief soon. I like to think you never know what's around every corner, so any day things can turn in our favor [Smile]

Thanks for the update
healing hugs [group hug]

Dana

Posted by Boomerang (Member # 7979) on :

Hi Bea!! So good to hear from you!! Have been worried about you and your hubby!!

Posted by lymemomtooo (Member # 5396) on :

Bea, glad you stopped in. Sorry things have been so stressful.

My daughter continues to have some progress since going to the brain damaged clinic. There is a long road ahead but at least there is now hope.

Hugs to you and your husband..lymemomtooo

Posted by CaliforniaLyme (Member # 7136) on :

Very nice to hear from you*)!*)!! Wish your honey was doing better!!!

I am 100% symptom free and anticipate full remission once I go back on cipro (but can't do that because breastfeeding). I wish you lived nearby so I could invite you over for tea and
could meet you guys. Your husband is, even so sick, such a lucky man to have you.

Take care-

Posted by char (Member # 8315) on :

Hi Bea,

My kids and I are doing much better. They are out of bed! Son is back at school part-time and
my daughter is studying for her GED. They both are getting their hutzpa back. Still a ways to go, but out of emergency and/or misery mode

We got infected in 2000 and started treatment in 2004.

I sent a pm.

Best wishes,

Char

Posted by valymemom (Member # 7076) on :

We have missed your voice of care and reason.

Posted by Cass A (Member # 11134) on :

Dear Bea,

Good to hear from you. I've read many of your posts with interest!

Please give your hubby my best wishes!

Buhner herbs didn't work out well for me--serious adverse reaction, whether "Herx" or not, I don't know. I'm currently taking Zith and artemisinin and feeling pretty good...today.

Best,

Cass A

Posted by David95928 (Member # 3521) on :

Thankfully, I continue to do pretty well. I have been pretty stable on Biaxin/Bicillin for about four years with continued gradual improvement. It used to be that I was in the hospital about once a year for some reason or another. It's now been almost six years.
Dave

Posted by Michelle M (Member # 7200) on :

Bea, it's just so great to "see" you again. You're da bomb in my opinion. A hug to you and yours.

Michelle

Posted by Aniek (Member # 5374) on :

Bea,

Welcome back. I started zanaflex recently for muscle pain. I'm pretty sure it's used in people with muscle rigidity. Just a thought.

I wish you and your husband the best. You are such a wonderful wife, with the amount you post on this site to help him.

-Aniek