I Need a Nail

This is another of those combined blogs, one by author, one by proxy, two by confusion, too confusing? Not for us. We know how to deal with the confusing, the confused, and the unexpected: give flagyli.

The other day Richard and I were mixing grain and putting the "feedstuffs" in their proper containers and Richard said in response to my asking if he needed anything to open the peanut bag - "I need a nail". He meant scissors. Anyone except me and those of us who have been through flagyl would say "Slip of the tongue". Yes, but not with Richard. This was flagyl-induced, brain-being-worked-on response. My own physical feeling was that of electric shock. This kind of thing happened several times during this pulse which will end tonight. Each one was so off the wall and unlike him that it can't be attributed to slip of the tougue. It was also our 30th wedding anniversary. We are "day-sponsors" at our NPR radio station and with our donation he had put the announcement; "To my wife, Rica, I give all my love and half my pillow." Never would I have made it through these years without the unfailing help of this generous man.

<> Yes, Sarah, we sometimes do flagyl at the same time. Last week at my three month checkup, my doctor was so impressed that he said, "How long since your last MRI? You should have one." Richard will ask the radiologist at the hospital to compare it and the earlier ones - again. It will take a few days but I will let you know if there is anything interesting.

Saturday afternoon my legs began getting a little heavy and by late evening I could barely walk. It had been very close to eight weeks since the beginning of my last flagyl pulse, the one that turned my brain to soup and took at least five weeks to recover from. My legs used to scream at me that it was time to do flagyl; leading me at least once to begin a week early. They have been fairly quiet lately but rose up Saturday in revolt, demanding that I "DO SOMETHING!". So I realized that even in my new world there must be flagyl. But my new world is nice and I am so sorry for those who have turned their backs on this sometimes difficult path, but that path may be a concentration of what would come in the future if we didn't take this one. Today is well into my second day of my 45th pulse and two things are vastly different from the two and a half years just passed: on my very first pulse I took the full dose and by the second pill I was flat, mentally and physically. I have NEVER repeated that dosage - until now. I am well into the second day of this and beyond a bare touch of vertigo, I have NO symptoms of flagyl. I began my pulse after wobbling to the house that night, and ten hours later my walking was back to its usual EDSSi of 2 or better. Another milestone is that I am now officially in my fourth year.

Comments

Once in a great while is

Once in a great while is feeding a challenge, in which case Richard, who is "doing water", or setting up for milking will step in and carry the feed down to the bucks and pour it into their dishes. And yes, those times are always during flagyli. But not for over 2 years has there been a time when I just couldn't get there at all. At the very best of times then, I used my tricycle to get to the barn - 125 feet - and had my cane in the basket. Boy, do I not miss that. The other point is certainly you! Yesterday, I mentioned my admiration for anyone who can do flagyl even close to continuously. I can understand your not posting much given the feeling of removal from the world which is bestowed on us, but how are you physically and mentally? It would be so great to hear from you.

 

Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyl total 44 pulses NC USA

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Rica, Keep on trucking!!!!

Rica, Keep on trucking!!!! I am at a point now where I need to increase flagyli but I don't want to. I am sick of feeling bad. But I did have a great summer. Although now I am in something, the virus I have is not helping. Can you still do all your goat duties while pulsing? kc dxi msi 1996. started capi 10/05. Started with tinii pulses switched to flagyl pulses. Now almost on continous 500mg flagyl but do need breaks. On doxyi 200mg/day azith 250 mwf and NACi only 600mg. No vitamin di now since the combo makes me go beserk. Comi
dxi msi 1996. started capi 10/05. Started with tinii pulses switched to flagyli pulses. Now almost on continous 500mg flagyl but do need breaks. On minoi 100mg/day biaxin 1000mg day and NACi 600mg. ldni 2.0mg.

Rica - Just wanted to wish

Rica - Just wanted to wish you and Richard a very Happy 30th Anniversary. 

That is a true accomplishment with illness or not.  Not too many people seem these days to be able to stick to marriage with it's ups and downs.  Just goes to show what a good team you and Richard are together as well as it's a testament to both of your values and able to stick to something, even if it's sometimes hard!

Happy Anniversary!

Daisy-Caregiver- Balo's Concentric Sclerosis. Began CAPi 5/10/07. Doxyi 200 mg, Minoi 100 BIDi 9/1/07, AZI 250mg QDi 9/10/07, NACi 1200 mg, HD Flagyli Pulses, Novantrone, Prednisone & daily lb of supplementsi.

Daisy - Husband on CAPi 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MSi drugs killed him.

Daisy on her own CAP 11/2012. 

Excellent Rica, great job,

Excellent Rica,

great job, well done.  I know what you mean about "nail"; that happens to me more often than I would like.  I have to tell people I may say something that I don't mean.  As you can imagine, it makes for different conversation.  The bad thing is when it happens, I swear I said "scissors" so I will defend myself.

I have been improving slightly since my pulse physio debacle; but the other day, I was tired & felt myself kind of drifting off when people were talking to me.  My brain switched off!!  I must have looked like an idiot really, but that is the way it is.  I think the critters are in my brain.

Keep up the good work, I think about you whenever I go to the store, goats milk, feta etc.

Blessings for you both.

Ruth

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonin">i, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 8-21-07 1st pulse 1 X 250 mg Metroi<

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<

If it was not for you Rica

If it was not for you Rica with Richard's support, many peolple would feel like giving up after two years.   Not me of course, but even I take comfort in your example when I am feeling low and unwell.   As I have said before I'm always showing Ella your example when she despairs of seeing any progress in her ability to walk...

Only thirty years... here's to thirty more. 

Michele (UK) GFAi: Wheldon CAP1st May 2006 . Daily Doxyi, Azi MWF, Flagyli at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMSi Wheldon CAP 16th March 2006

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

Thank you for your update


Thank you for your update and for being a pioneer!  It gives hope to those of us trying to get this started.  That in itself is a battle.  But reading updates like yours, and others, makes it worth continuing to try to convince physicians to get this started!
Lori











 
Started Vanderbilt protocol 1/9/08  Rifampin once a day, b12 injection monthly , vitamin Di 50,000 IU weekly

Oh, congratulations, Rica!

Oh, congratulations, Rica! With everything you've been through, I know what a milestone a full flagyli dose really is for you! (Not to mention that tiny milestone of thirty years of marriage. Congrats to both of you on that.) Four years! But it sure beats the alternative...

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi