I am wondering who here has gotten better with the help of iv Rocephin and how long you were on it. I have been on for 6 weeks and ha ve noticed some progress, especially with Nero stuff, but still have a ways to go. I have been treating for 13 months with a great llmd, but am just so. Worn put and tired of Lyme and co. I want to move on with my life.
Any feedback would be. Appreciated. Btw, I am on zithand plquenil too.
Thanks
Posts: 200 | From Boston | Registered: Sep 2010
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
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Please - Thank G*d that you have found a doctor who knows that 28 days on IV Rocephin is NOT ENOUGH to get rid of NEURO LYME!
My mother had 1 gm for 28 days 3 years ago (IDSA protocol!) and NOW she is in an Alzheimers unit! (While her kids argue about whether her NEW Neurologist is an "expert" or an idiot!)
Please - stick with the Rocephin as long as you are making improvement. 4 weeks has been shown to rid Lyme victims of joint pains, but the most recent study showed that treatment must go on for 6 months (or longer) to kill borrelia encephalitis in your brain.
PM me if you want a copy of the Stricker study on this - just published last fall.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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AuntyLynn
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BTW, are you taking any nutritional supplements? My Mom responded positively on good old fashioned Cod Liver Oil (we like the Carlson brand for efficacy much more than others) and Tumeric Force (a product by New Chapter).
But get the BASICS into your regimen first: B Complex (Burrascano says it's REQUIRED) Vitamin C Vitamin E
Cod Liver Oil supplies Essential Fatty Acids (which are brain builders), and Vitamins A & D both! Have you had your D level checked? I am betting it is deficient.
If you live where you can sunbathe to get Vitamin D - that is even better! (& SKIP the poisonous sunblocks please!)
Posts: 1432 | From New Jersey | Registered: Jan 2012
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Thanks, my llmd is Dr. H so, yes, I am on tons of supps. He leaves no stone unturned. I am just feeling very worn out and tired of treating. It is a long road. So sorry to hear about your mom. Anyone else to pipe in please?
Posts: 200 | From Boston | Registered: Sep 2010
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AuntyLynn
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Did Dr. H put you on NT-Factor? If you read Burrascano's guidelines, he says it has "impressive" results in boosting energy - often within 3 weeks.
NT Factor feeds your mitochondria, which is the "energy powerhouse" in each cell.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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posted
Anyone else please with things to report on Rocephin? Not really looking for suggestions on supplements (but thanks so much anyways), just wanting to really hear from people who have been there done that!! Thanks so much!
Posts: 200 | From Boston | Registered: Sep 2010
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sammy
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Member # 13952
posted
6 weeks of Rocephin is just the beginning.
I'm sorry, you must be patient with yourself if you want to see improvement. Try not to stress. Your body is working hard to heal, to keep you alive.
After I had been on Rocephin for several months I was able to look back and see significant improvements. It was a slow gradual process. I took it in combination with other antibiotics and supplements.
Hang in there undiagnosed. Keep treating. I know you want to get back to your old life. We all do...
Posts: 5237 | From here | Registered: Nov 2007
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posted
Thanks Sammy. Are you still on it? How long have you been treating?
Posts: 200 | From Boston | Registered: Sep 2010
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Lymedin2010
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Member # 34322
posted
I was on Rocephin for three months (1G per day). �This should have been 2G from what I have now read.
Month 1- From barely being able to walk due to extremely high neck and head pressures on day one. �Gradually saw improvements up until week 3 and by then I was 95% better, full of energy from being drained and depleted, and ecstatic. �Unfortunately things went downhill from there.
Month 2- Added Zithro and Mepron but started to decline and develop new symptoms. �Very gradual though.
Month 3- Now it was with Biaxin and Mepron and the symptom list grew longer. �Eventually from 3-5 symptoms to two pages worth with oncoming months.
I felt it migrate through my body downwards by the twitches and shakes and vibrations. �All my symptoms were in head and neck, then thorax, stomach, arms, hips, upper legs, then lower legs. �So felt it spreading downwards and there was no stopping it.
Also each time I was injected I would feel a quietness but after a few hrs more activities in my body (twitches and tremors). �As time went on the quiet phase was shortened from 12-13hrs before I felt any activity to 4hrs. �I believe I have great super kidneys and they excrete the ABX's more efficiently with time.
Posts: 2087 | From NY | Registered: Oct 2011
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