Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
We did get to visit w/ my LLND,and will make TxCoords appt. for another time.
TxC.s Rt.eye vision[Vein Ooclusion back of eye] has not changed,and at least it is no worse. The LLND gave us some specialists names,and we will have an appt. for his eye w/a specialist on Aug.21st.
The Lyme is going into remission!!! I know it may not last,but will take any reprive I get as a blessing!!!
It is still attacking my joints especially in my legs,and my sinuses etc. I have a bit of an infection going,and as soon as we can afford to get out meds,I'll be back on antibiotics. At least I know what most of the problem is now..and why I'm soo crazy/or not...LOL !!!
The Bad news...I have the beginnings of Vasculitis, Momma has the Wegeners Granulomatosis form,bad stuff fro certain.
Right now the main concern is Temporal/Giant cell Artereitis [sp?],and the possibility of me ahving Wegeners also. The lingering headaches,dizzines,edema in limbs and so on..is part of it? I guess. I am still researching.
Do many of y'all have this problem from Vasculitis? What has helped those who have it the most so far??? Any thing you'd be willing to share I'd grealy apprciate.I will be starting some meds for this shortly as well.
We didn't do the invasive type testing,w/o insurance,and w/ the dangers as well. That will come later if I can't ge this mess under control.
Still, the darn Lyme is on the run... ... I will keep fighting...
Love from the Greatful Silverwolf!!!
-------------------- 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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Your Lyme is going into remission??? Yeah!!! Woo Hoo!!!!
Sorry about the vasculitis. It's painful! Is the dr. putting you on prednisone? Is there a cure?
Kayda
Posts: 582 | From midwest | Registered: Nov 2006
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< Kayda >>>>> ,
Thanks for celebrating w/ me!!!
as to the vasculitis,because of the Lyme/Bart issue I cannot take steroids [Prednisone,Cortisone etc.]so we are going from a different angle.
Dr, wrote down the name of something unpronouncable to see if our compounding pharamcy can order it.
It is a natural and more gentle type of *blood thinning agent* [unlike coumadin which almost killed my mom last month].
*Edited to add: this[Nattokinase] isn't a blood thinner,rather it's an Anticoagulant!* Dmc gave me some info',in their reply,and I am glad to know this!!!
The medication starts w, 'Natt...?' anyway we'll find out,when we get out next check,if the pharmacy can help.
I do not know if there is a cure persay for vasculitis.I still have a lot of research to do.
-------------------- 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
Dear Silverwolf, My husband has Lyme & Wegener's Granulomtosis. It shut down both kidney's & had a blood clot in each lung.I don't know if Lyme induced the Wegener's ???? "The Vasculitis Founation" (formerly Wegener's Granulomatosis Association) www.vasculitisfoundation.org "They are a wonderful organization" if you need support /information pertaining to Wegener's. I hope this will be of some help. Robin
Posts: 139 | From Panama City, FL., USA | Registered: Jun 2005
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
<<<<< Somerset >>>>>, Thank You so much for the Vasculitis site! It contains a lot of info' in one spot, easier than the searches I have been doing for certain.
I have been hoping it isn't as severe a form as the Wegeners that Momma has. She has suffered horribly. I will pray for your husband!And for you as well,it is hard to watch a loved one suffer.
I'll post this and then book mark the site,for ease of finding!
Love from Silverwolf
-------------------- 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
"Your welcome Silverwolf", What's help my husband & myself, is that we did alot of research,tried to keep an open mind and avoided negative/stressful situations as much as possible. "Strength,understanding & peace of mind", Robin
Posts: 139 | From Panama City, FL., USA | Registered: Jun 2005
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
was it nattokinase? It is a derivative of soybean that helps keeps the fibrin in blood from clotting.
Not a blood thinner but anti-coagulant. Can get in herbal stores. Make sure has no Vit. K in it and has 1,000 units.
I have to take this due to having Factor 5 Lieden. A genetic predisposition to clots.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
<<<<< dmc >>>>> yes it is Nattokinase,and thank You for the info' and explination as to what it is!
It is good to know that it is an Anticoagulant ,rather than a blood thinner. LL Dr. did say for me not to use asprin and its derivative meds while on this med. I didn't know about the Vitamin K,but that does make sense!
The Pharmacy we use for more natural alternative meds [ as well as regular meds at times ], should be able to fill the 'scrip' on this. We will see!
In Idaho,unfortunately, most pharamcies will not accept medications prescribed by a Naturopath. My LL Dr. is a Naturopath[overseen by an MD,and they are out of state],so we are hoping the particualr pharmacy we are going to will fill my antibiotic prescriptions as well.
I'll update as to if they will,if not we'll havee to go thru our *GP,out of town, but not to long a drive, and in state [ he is Steere camp ].
*He may help us, he did for the Rocephin injections,but doesn't "...really think much of that stuff will help..."
He means the more natural things like Artemin, tho' he isn't neccesarily against most natural meds' and actually tells his patients to use certain ones, if they will do as good a job than the traditionals.
Thanks again for the replies and info'!!! I still have so much to learn,and am hoping to be able to get my meds sooner than later. I have enough issues going on w/o relapsing before I've totally gotten into remission.
Love from Silverwolf in Slippers at the mo'!
-------------------- 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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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Local GP,did say he'll help w/ the antibiotics.
We'll be picking up the Cipro 20 tabs,hopefully this Wed. and half the dose of Zith' since we can't afford the whole dose right now.
The Cipro is only supposed to be $4:00 ,but the Zith' is gonna cost $186 bucks for 20. So we are going to only get a half set[10].
Then after TxCoords 2nd opinion eye exam,we'll try to get more of the Zithromax generic and try to finish it.
ANd Then...maybe I can try the Nattokinase stuff,and get back on my Prima Una de Gato [Cats claw].
I hate Lyme and all the issues it causes.
Just Silverwolf here mumblin' and grumblin'.
-------------------- 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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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
My doctor has me taking Nattokinase. You can buy it online from VitaCost.
I'd like to hear from you how it works. I'm not sure if it makes a difference or not in me.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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The Lyme is going into remission!!! I know it may not last,but will take any reprive I get as a blessing!!!![[dizzy]](graemlins/dizzy.gif)
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