This weekend was great! A full day out and about on Saturday, I felt comfortable leaving my wife and 7 year old daughter at a fun-fest at our church while I took our son to his ice skating lessons. Then we all went to see Shrek 3 after a full day in the sun. We are finally becoming unbound from this disease and enjoying more freedom to get out and live.
Michele is now handling her own email communications for the first time in a couple of years, and every day she has functional improvement. When I transfer her to and from her wheelchair she is now assisting by using her legs to lift, I was used to taking her entire weight, and letting her legs dangle while moving her. No more of that, and she is standing for a minute or so at a time, just her arms holding on to me - no effort on my part to keep her up! 2004 was the last year that she could transfer independently.
I am really angry that the medical community wasted so many years of our lives on useless drugs when we can at least stop the progress with LDN, and in Michele's case see such dramatic improvement. We really do need a medical revolution - and not a socialized system - but more like what happened with the GNU software movement and Linux in the computer field.
By the way, the increased Keppra 1000mg 2 times/day seems to be keeping the seizure aura's away, and we have not seen any lasting effect from the seizure last week.
Monday, May 21, 2007
Thursday, May 17, 2007
Can't Stop the Seizures - but Positive Progress Continues
While Michele has been doing very well since the last post - regaining use of her left hand, using her computer again and replying to emails, standing up with my assistance for a minute at a time in the mornings before transfer to her wheelchair, prepping her own toothbrush every evening now and requiring no assistance with washing up at bed time...all miraculous improvements in such a short time, she continues to battle seizures and had a grand-mal seizure last night that lasted for a short (for her) 8 minutes.
It took about an hour post-seizure for her to be able to muster any verbal communication and then could only produce "yeah". It was comforting though that immediately after her seizure, within minutes she was able to communicate with blinks and could still work out a partial smile. A couple of mg of lorazepam helped to quiet the electrical brain-storm.
Consequently, I have increased her Keppra back up to it's full prescribed dose of 1000mg 2 times a day even though she has had what the Dr.'s call "breakthrough seizures" in the past at the same full dose and then even with other anti-epileptics in the mix. I think that where there is a lesion in the wrong place in the brain, there will be a seizure unless there is so much medication that a person is fully sedated. Living life in a fog is not a reasonable trade to avoid seizures, especially if the seizures continue to be as innocuous as yesterday's.
Michele's first seizure a few years ago took out a full year and a half of her memories and caused a lasting short term memory problem that has just recently resolved, so we will be careful until we can get some MRI's that show lack of related lesion activity.
I am keeping the minocycline at 100mg/day and the nightly Naltrexone, and until the seizure aura's subside Michele will take lorazepam, especially before bed.
We have reasonable hope that we are still on the right path to at least stop the MS for long enough to see progress with all the MS research that is going on. Here are some promising advances:
personalized autologous autoreactive t-cell vaccination:
http://en.wikipedia.org/wiki/Tovaxin
and an alpha-cobratoxin derived agent that affects the IL27 cytokine:
http://www.nutrapharma.com/display.php?newsid=115
It took about an hour post-seizure for her to be able to muster any verbal communication and then could only produce "yeah". It was comforting though that immediately after her seizure, within minutes she was able to communicate with blinks and could still work out a partial smile. A couple of mg of lorazepam helped to quiet the electrical brain-storm.
Consequently, I have increased her Keppra back up to it's full prescribed dose of 1000mg 2 times a day even though she has had what the Dr.'s call "breakthrough seizures" in the past at the same full dose and then even with other anti-epileptics in the mix. I think that where there is a lesion in the wrong place in the brain, there will be a seizure unless there is so much medication that a person is fully sedated. Living life in a fog is not a reasonable trade to avoid seizures, especially if the seizures continue to be as innocuous as yesterday's.
Michele's first seizure a few years ago took out a full year and a half of her memories and caused a lasting short term memory problem that has just recently resolved, so we will be careful until we can get some MRI's that show lack of related lesion activity.
I am keeping the minocycline at 100mg/day and the nightly Naltrexone, and until the seizure aura's subside Michele will take lorazepam, especially before bed.
We have reasonable hope that we are still on the right path to at least stop the MS for long enough to see progress with all the MS research that is going on. Here are some promising advances:
personalized autologous autoreactive t-cell vaccination:
http://en.wikipedia.org/wiki/Tovaxin
and an alpha-cobratoxin derived agent that affects the IL27 cytokine:
http://www.nutrapharma.com/display.php?newsid=115
Sunday, May 6, 2007
Backing off the Minocycline by 1/2 for a bit
Michele has been feverish over the past couple of days - low grade at ~99 degrees. This is not a fever in any of the common medical circles, but for Michele this is almost 2 degrees above her 97.3F optimal temperature. Anything above that and dysphagia, slurred speech, confusion, lethargy, spasticity, etc. set in.
We had a day out with the kids yesterday watching them play miniature golf and having fun. She was having a hard time then too, and today was not up to getting out of bed, complaining of that pre-seizure aura (upset stomach for her) and some facial twitching that we have come to learn means to get a lorazepam under her tongue quickly to ward off any seizures.
So we watched a movie in bed today and she caught up on some sleep. I took the opportunity to nap for as much of the the day as I could too.
Because of the apparent worsening of symptoms over the past few days, I think it is prudent to cut back on the Minocycline by 1/2 - maybe this is a Herxheimer Reaction, maybe she is just fighting off some bug going around, or maybe this is just a temporary flareup of the damage in her brain's temperature control region that we have seen over the years.
So I am going to follow more of a rheumatic minocycline protocol that uses a bit lower dose than the 100mg twice daily that she has been taking since April 24th - for 2 weeks.
Meanwhile the Low Dose Naltrexone is being tolerated better - or maybe the low grade fever is just sapping her energy and masking any endorphine modulating effects on her emotions. The great news is that we did correlate low blood sugar with this emotional volatility by the end of last week, and I can surely relate to that hypoglycemic anger effect - as it affected me (or should I say my friends and family) very dramatically from my teen years onward. Thus, Michele will follow a more hypoglycemic diet this week and we will see if that helps keep the peace at home.
To see reference articles that are current and referenced in my blogging, go to my research clipping site:
http://del.icio.us/bryanwatson
Some good research and articles that you can find linked there:
Low Dose Naltrexone
http://del.icio.us/bryanwatson/ldn
Minocycline
http://del.icio.us/bryanwatson/minocycline
...also available from my main blog page in the upper right corner.
We had a day out with the kids yesterday watching them play miniature golf and having fun. She was having a hard time then too, and today was not up to getting out of bed, complaining of that pre-seizure aura (upset stomach for her) and some facial twitching that we have come to learn means to get a lorazepam under her tongue quickly to ward off any seizures.
So we watched a movie in bed today and she caught up on some sleep. I took the opportunity to nap for as much of the the day as I could too.
Because of the apparent worsening of symptoms over the past few days, I think it is prudent to cut back on the Minocycline by 1/2 - maybe this is a Herxheimer Reaction, maybe she is just fighting off some bug going around, or maybe this is just a temporary flareup of the damage in her brain's temperature control region that we have seen over the years.
So I am going to follow more of a rheumatic minocycline protocol that uses a bit lower dose than the 100mg twice daily that she has been taking since April 24th - for 2 weeks.
Meanwhile the Low Dose Naltrexone is being tolerated better - or maybe the low grade fever is just sapping her energy and masking any endorphine modulating effects on her emotions. The great news is that we did correlate low blood sugar with this emotional volatility by the end of last week, and I can surely relate to that hypoglycemic anger effect - as it affected me (or should I say my friends and family) very dramatically from my teen years onward. Thus, Michele will follow a more hypoglycemic diet this week and we will see if that helps keep the peace at home.
To see reference articles that are current and referenced in my blogging, go to my research clipping site:
http://del.icio.us/bryanwatson
Some good research and articles that you can find linked there:
Low Dose Naltrexone
http://del.icio.us/bryanwatson/ldn
Minocycline
http://del.icio.us/bryanwatson/minocycline
...also available from my main blog page in the upper right corner.
Friday, May 4, 2007
Michele's Current Meds and Proven Supplements
I will provide a more complete list of supplements with commentary later, but here are the supplements and current meds that Michele is taking. The goal is to get rid of the standard meds as soon as possible, as Michele does not have a standard form of MS.
Standard Meds from the behind the middle of the bell curve medical practitioners (not a put-down of any doctors - just a fact that litigation potential, proper medical conservatism, hospital policies, and other factors limit most medical practitioners' ability to treat a patient like Michele) :
Supplements - the short and proven list:
Standard Meds from the behind the middle of the bell curve medical practitioners (not a put-down of any doctors - just a fact that litigation potential, proper medical conservatism, hospital policies, and other factors limit most medical practitioners' ability to treat a patient like Michele) :
- Baclofen
- Keppra
- Tegretol
- (stopped Methotrexate prior to starting the LDN)
- Naltrexone 3.5mg @10PM
- Minocycline 100mg bid (neuroprotective - noticable functional recovery when she is on this or other tetracycline class antibiotics)
Supplements - the short and proven list:
- Brewers Yeast Buds - 3Tbsp.day (to boost uric acid, this stabilized her internal temperature control over the past 2 months)
- Evening Primrose Oil -4500mg/day (noticable improvement in alertness/energy)
- Calcium Citrate Maleate 2X800mg a couple of hours before bed (other kinds did not work to help sleep - this had a dramatic effect some years ago in causing dreams and real sleep for the first time in 20 years).
The First Week of Low Dose Naltrexone
A warning from the trenches - Messing with endorphins may be hazardous to your family!
Michele started on LDN April 26th. We found a neurologist in PA who was able to do a telemedicine consult and then prescribe 3.5mg nightly. The dose was reduced from the standard 4.5mg because of Michele's spasticity.
The first few nights were laced with dreams, nightmares, and restlessness - while the days were filled with hypersensitive emotions and anger outbursts towards the rest of us in the house. Luckily I prepped our children to understand that this was a possibility and they are cool with a little trouble now as a tradeoff for stopping the coming terminal progression of Michele's MS.
Am I dreaming that Michele will walk again? Yes, I am. But that may be some years into the future, and it will probably be another treatment besides LDN that makes that happen. It is our hope that the LDN sill simply stop the MS in it's tracks long enough for a recovery treatment to become available.
Michele started on LDN April 26th. We found a neurologist in PA who was able to do a telemedicine consult and then prescribe 3.5mg nightly. The dose was reduced from the standard 4.5mg because of Michele's spasticity.
The first few nights were laced with dreams, nightmares, and restlessness - while the days were filled with hypersensitive emotions and anger outbursts towards the rest of us in the house. Luckily I prepped our children to understand that this was a possibility and they are cool with a little trouble now as a tradeoff for stopping the coming terminal progression of Michele's MS.
Am I dreaming that Michele will walk again? Yes, I am. But that may be some years into the future, and it will probably be another treatment besides LDN that makes that happen. It is our hope that the LDN sill simply stop the MS in it's tracks long enough for a recovery treatment to become available.
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