posted
I would think those of us with these dxs are on the most agressive tx. What meds and dose is everyone on.
I am on IV Rocephin 2 gr 1x day, mepron, zithro, plaquenil and actigall.
Posts: 262 | From nj | Registered: Dec 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
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posted
That is what I was on, the IV dose. I had mixed MS/Parkie/ALS symptoms.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Hi California Lyme I have read your story and I have been meaning to tell you how much it has encouraged me. We have alot in common - lyme symptoms and otherwise. Very brave of you to share so much. You are helping alot of people.
Posts: 262 | From nj | Registered: Dec 2007
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posted
I have not researched IVIG but I think it is made up from other people's blood (immune systems?) which makes me nervous. I have heard some benefiting from it though. I don't have a neuro now can any Dr rx this and is it readily available? I think it is expensive and ins will not always cover it.
Any success stories here with IVIG?
Posts: 262 | From nj | Registered: Dec 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
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posted
IV IGG is very expensive and insurance usually will only cover it if your blood testing reveals immuno abnormalities (don't ask me what ones, I don't know!). For those people it can make a big difference...
Normal IV Rocephin ranges from 2-4 grams a day, most people are on 2!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Yep...I am on IV Rocephin 2 gr 1x day,IV Glutathione 2g push 1x day, mepron, zithro, plaquenil,Minocyn,Valtrex and actigall...also B-12 1cc injections daily and 1cc Magneesium injections every other day...oh and about 9 suppliments/detox things I think thats it...
posted
Jay - good luck to you and Shelia. Keep us posted. I don't know about the silver so can't comment on that. Is Shelia getting a PICC line?
Derek - We are on similar abx. Glad to hear you are starting to improve. That is encouraging. How long have you been on IV?
Posts: 262 | From nj | Registered: Dec 2007
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posted
Ive only been on IV for 1 month....tried orals and IM's for 2yrs prior to this. My dosage of rocephin just got changed to 2 grams 2x a day...4on 3off...hope it works
How long for you?
Derek
-------------------- Dxed ALS 2/05 Dxed Lyme/Babs 9/05 2/08 Finially Improving
"It Can always be worse...." Posts: 51 | From Victor, NY | Registered: Aug 2007
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posted
I was on orals for 2 yrs too and will be on IV 2 months in afew days. I was on IV 2 1/2 yrs ago for a month until I had problems. I was doing much better then and should have went back on IV sooner but my Dr had discouraged it. Because of the problems I had then I was started at a very low dose this time and increased slowly. I have been at 2 gr a day for about 4 wks.
I am going to ask my Dr about whether she will increase me to a higher dose. Let me know how the new dosage works for you.
Posts: 262 | From nj | Registered: Dec 2007
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I also get glutathione pushes and B12 shots.Our protocols are similar.
What are your symptoms?
Posts: 262 | From nj | Registered: Dec 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Ok you guys- if you get symptom free pleeease write up your stories for the ALS Lyme page??? Pleeeease*)!*)!!!!
I wish you the best!!! I'm rooting for you*)! Bestest Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
High-dose Zith. only seemed to advance symptoms. Trying low-dosage abx. now; doxy and zith. Also have known a few more people where abx. advanced their symptoms.
posted
Sara....you can guarantee I will be writing up my story for the ALS/Lyme page....and give a copy to my neuro who Dxed ALS and gave me 3-5 to live....''You don't have Lyme...you have ALS, don't waste the time you have left chasing some miracle cure that wont work''..
And also Sara, thank you for everything you do for us ALS/Lymies, you're a great source of info and encouragement.
NJ Girl: Day 3 of increased dosage...no real change yet. My symptoms are, hand, arm and shoulder weakness and atrophy, leg weakness...some atrophy, balance and walking issues, speech and swallowing issues...but these have gotten better in the last month.
What are your symptoms?...how much Glutathione are you doing?
Derek
-------------------- Dxed ALS 2/05 Dxed Lyme/Babs 9/05 2/08 Finially Improving
"It Can always be worse...." Posts: 51 | From Victor, NY | Registered: Aug 2007
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posted
Mike I have gotten worse mobility wise. Some symptoms have come and gone but as a whole quality of life and mobility are worse. If I back off abx excruiting neck aches creep back in aas wewll as other things. Kinda a catch 22. what have others done? What do you mean by low dose?
Derek I have all the same symptoms as you except the swallowing. Are you able to exercise at all? I go to a clinic near Philly for IV detox tx and get 2 glut pushes when I am there. I hope to start more pushes at home soon.
Posts: 262 | From nj | Registered: Dec 2007
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