posted
I haven't heard from her lately. Just when they got all moved in.
Hope they are OK!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi there <<<<< Carol in PA, Lymetoo, and Lymenet family >>>>>,
Thank You for asking after us!!! Things have been a bit crazy here. And we've both been really weary.
Glad I checked in here tonight, we were looking at the Face-book info' on the Lyme awareness...
And I checked to see how Lymenet folk are doing. it is hot here most of the time,and we like the warmth!!! I don't think the spirochetes like it tho'.
My energy level is pretty low,and we've been going to Dr.appts.,Mostly TxCoords right now.he has been having some unusual health issues.basically some muscle Problems.
We were at his VA Drs. today,and they got him set up w/ some appointments.it's gonna be a busy,busy month.
Next month,i have ,and an appt. end of month after a fasting blood test a few days. unfortunately my Dr.is non LL.But will see how blood glucose is,thyroid that sort of things.
Suspicion for me,is Menieres disease, [thanks lots Lyme Neuro-Borreliosis and Co's... Arrghhhowooo ].
On the good news side of things, in a couple of months we should have some resolution to the disability VA situation for TxC,one way or another.
And...we've found a really nice church,wonderful people,so far very accepting of us.
Wednesday evening was my fourth time to be able to go!! we are enjoying the singing,and the teaching as well!!!
I just have to rest a couple of days after each service. We'll probably use the 'Spoon Theory'...
to explain the chronic illness and limited energy situation,to those who might not understand.
Sorry i haven't been on Lymenet much lately, I am fighting to keep my energy level up.
We have at least two trips that will be out of state this summer.The VA resolution situation,and a trip to retrieve the last third of our things that are supposed to be stored up in SE Idaho.
Then we can hopefully rest, and get into some sort of schedule.
I'll try to check in a bit more often...going thru some brain-fog mush and some sadness...
on the fifth anniversary of my Mothers death right now. I miss her very greatly, yet I know that she is no longer ill and in pain.
Again,thanks for asking after us. We do enjoy the rental were we are living and are happy not to have to deal with weather so cold as Idaho tended to be.
Heading off for now as I am prolly rambling... jus Silverwolfi and Txcoord too!
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Okay, you're still around, good. Some people just stop posting, and I never find out what happened.
Did you try Berberine?
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
I'm also glad to see you are still around! Take care!
Posts: 447 | From Vermont | Registered: Jan 2011
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
So GOOD to hear from you Silver. Sounds like life is taking you down some different paths lately.Happy to hear you can roll with it!
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< LymeNet family, Carol in PA, rera2528,and momindeep >>>>>,
I have tried some limited berberine products,but will need to get some of better quality.
The little store where we often go to get supplements,and much of our GF products,didn't have the better berberines, persee.
I liked the turmeric, which I am out of at the moment,and the goldenseal.
So glad berberine was mentioned here,as i was trying to remember,the name so I could add it to my list of supplements. That way if I am not w/Txcoord and he sees good product inexpensively he can get it.
We are prayerful,that by end of summer,finances wont be as tight, that will help hugely!!! Right now TxC' and I are prayerfully trying to take care of each other,and shepherd our energy.
We've been trying to get out for a church service,appointments,and occasionally walks in temperature controlled malls in area[ we have TxC's wheelchair w/ usually, and that helps too.
We are trying to roll along,and walk along now and again too. TxC' is in a special excercise,and nutrition program now thru VA medical.
It is just starting for us[ I am mostly support,but sometimes i can pick up pointers to help us both]. The actual program is Veterans only.
Trying to keep my chin up, despite the tiredness,and low energy. After blood tests and all next month,i am hoping to add some more supplements to my routine too.
I generally check for cross-reactivity just as a precaution now.When I had the 'statin reaction' I learned quickly [I still fight stiffness in my joints from that mess].
Well,I'm off to check my laundry, so I'll get back here later on!
just Silverwolfi
Main issue,is trying to get muscles and all to cooperate, I am very limited still,and TxC' has some issues that the med teams are looking in to
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Good State offers free samples of Berberine. I ordered the 250 mg sample, and they sent two bottles of it.
Once I knew I could take it, I ordered some through Amazon.com, and I went up to 500 mg twice daily.
My headaches decreased somewhat, joint pain decreased, gastric reflux decreased. After several months, I took a six week break. The reflux came back, and I went back on the Berberine.
I ordered the larger bottle of GlycoX 400 mg, as it has 120 capsules and is a better value. I'm presently taking one daily.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< Carol in PA >>>>>,
Thank you so much for the link and the info',I bookmarked it this time so I can show TxC' the info' and options!!!
Keeping in hope and prayer that our financial issues will be resolved by end of summer. That'd be a huge help for us!!!
It is good that they give samples to try as well!We've had times when something didn't work for us,and we had to just eat the cost.
Sounds like a really helpful product, i get migraines,IBS and so many other issues.This seems to address many of them.
Looks like my paragraphs in last reply got muddled...arrgghhhowooo... I keep hitting the wrong key.
TxCoord,and I have both been having some muscle problems,as well as cramping...we do take magnesium...so i am on the hunt for other things that may help and not interfere w/ prescriptions.
Hopefully,the nutrition class appt.,and his other appts. will help get to the bottom of the issues for him,and I'll keep researching too.
Thanks again for the link and the info'!
Jus' Silverwolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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posted
Good to see you, Silver and TxCoord!! Glad to know you are sort of OK! I understand about the grieving. Last week was the 20th yr of my father's passing and it hit me harder than usual. I'm OK now .. now it's Mother's Day and missing my mom!
Thanks for the link, Carol!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< Lymetoo >>>>>,
Here's extra hugs for you,and all Lyme family missing parents, grandparents, aunt's, uncles ,and other loved ones too. !!
Spent this weekend, reviewing my moms life sketch DVD. I am so grateful to have it!!!
I think we will always miss them...but the memories we have are so precious.
I am blessed to have my Father still living,and TxC's Uncle Buck as well!!! The other relatives over the age of 70 have all passed now.
A younger friend of ours had a horrific weekend. Her husband was killed,in a motorcycle accident this weekend,
... and she had to tell her three young daughters that their dad won't be coming home again. We hadn't seen her in sometime,and it was a real shock to hear of this tragic news.
We have hope in the Lord, and I know,I will see so many loved ones and friends again...I miss them for now...but will see them again!!!
On a happier note,we are trying not to be too stressed,over getting things planned for The VA disability hearing for TxC' coming up in a couple months...
[ tentatively ,we are still awaiting formal notice of exactly when and where the whole thing will occur tho' we know aprox. where...we think.]
Meanwhile...TxC' has more Dr.appts. coming this month, and I have mine next month. And if schedules permit,we may get a visit w/ a college friend we've not seen since 1988? or so.
Jus' Silverwolfi checkin' in
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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posted
Will keep your friend in my prayers. How awful!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
Glad to hear from you! Please keep us posted on how the hearing goes.
Take good care of each other!
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< Lymetoo, and Dogsandcats >>>>>,
Oops... I'll be back in a bit... phone ringing.
Okay, just more VA med appt. info for TxC' on the phone ... busy month here.
Lymetoo, thanks for keeping our friend in your prayers. Her husband was 32 years old...I feel such sadness for them.
Dogsandcats , we'll be sharing info' as the time gets closer and we have more info' as to the VA hearing.Thanks for the howdy!
Will be back later on...
Jus' Silverwolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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