posted
I wanted to let everyone know that I'm seeing improvement on Rocephin. I've started slowly, with 1 gram every 12 hours and with no other Lyme meds. I infuse for 5 days, then take 2 days off. The first 5 days I felt exactly the same. On days 7, 8 and 9, I had intense herxing (profound fatigue, bone and skin pain, nausea, diarrhea, loss of appetite). I didn't get out of bed on days 8 and 9.
Today, my 2nd day off, I do NOT feel sick!! I got out of bed at 9:30 a.m. I actually don't know what to do with myself. I'm only used to being very tired and sick. I think that herxing was serious die-off.
Tomorrow, I'll be starting on 2 grams of Rocephin every 12 hours and Flagyl, 500 mg, 3 times a day. I think it's going to be rough, but I'm hopeful for the first time in YEARS.
-------------------- Misdiagnosed with CFS for 7 yrs. Diagnosed by LLMD in 2009. Aggressive treatment for 3 years with minimum improvement. Posts: 120 | From FL | Registered: Jun 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I am smiling the biggest smile! Good for you!
Now.. remember this...
When you go down the tubes again.. herxing..
DO NOT LET it mess with your mind. This is about the most depressing thing I've had to go through.
It can feel like you've lost all the progress and will never be well again.
Sooooooooooooooooo...
Remember this special day .. take pictures if you want of anything and everything... and hold this good day memory in your mind and your heart till the bad days hit again.
You will need the power of this good day to get you through the bad that will be coming.
Tincup, I'm going to try very hard to remember this day when the going gets rough. I definitely have the tendency to think the worst when I'm sick.
canefan, I didn't use any detox methods. Hot baths are too hard on me and I don't know any other methods. Do you have suggestions?
-------------------- Misdiagnosed with CFS for 7 yrs. Diagnosed by LLMD in 2009. Aggressive treatment for 3 years with minimum improvement. Posts: 120 | From FL | Registered: Jun 2009
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I'm having my picc line put in on Thursday, so I was very happy to see your message.
Keep us posted!
-------------------- Take care -kelly --------------- Posts: 330 | From TX | Registered: Mar 2009
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
sorry not sure if I understood correctly. Will you be on Rocephin 7 days a week or 5 days? also - are you taking Actigal?
Posts: 2232 | From USA | Registered: Aug 2009
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Welchol, Hot baths, exercise, lemon water
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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posted
Rocephrin has really helped me so far. I started 2 months ago but had a bad allergic rash reaction so had to back off to a lower dose and gradually increase the dosage while taking antihistamines for the rash. I'm up to 2g everyday now and feeling great! I was diagnosed with early ALS so I'm hoping I really have late stage neurological Lyme instead. Anyon else in the same boat?
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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posted
i heard one of dr. H's ALS patients went to india for stem cell treatment and is doing very well- not sure of his treatment before hand.
Posts: 200 | From New England | Registered: Dec 2009
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