Differences in LDN Sourcing and Dosage Effectiveness

While we had very noticeable success with a prior prescription of LDN from Skips Pharmacy in Florida, we tried a local pharmacy in Los Altos CA, and had very little success - aside from the change in diplopia. None of the other positive effects that we anticipated materialized.

So I ordered 30 tablets of 50mg Naltrexone from a pharmacy in India so that I could compound my own LDN to dial in the correct dosage. That has proven successful, as the Skips dosage was 3mg and worked, and the Los Altos Pharm dose was 4.5mg and was not working, I am now mixing 50mg crushed tablets into 102cc of liquid carrier (using a liquid vitamin base this second batch around). This gives 17 doses at 6cc each for the batch and provides 2.9mg of Naltrexone per dose.

And with the total cost including $24 shipping at $75 for 30 tablets, we are getting 510 doses for $75.

I don't really care about price, but that is pretty cheap for something that has now in the past couple of weeks given Michele the ability to brush her own teeth every night, even when tired. She is also starting to move and use her left arm again as well as her left hand, and can support her weight on her feet for a couple of minutes now when I lift her to a standing position.

The moral of this story is that you need to not give up when at first the Naltrexone does not succeed, but change the dosing and change pharmacies. I am going to experiment with the next batch to see if we lose LDN efficacy at 4.5mg, or if the source/batch really makes a difference.

LDN has Reduced/Eliminated Diplopia of 10 years Duration

YES!

This LDN is GREAT! 10 years of diplopia (fancy word for double-vision), and now we have to go get Michele some non-prism glasses. Her diplopia was so bad that it existed even with MAXIMUM prisms. The only option that was left was to do surgery on the eye muscles!

AND - she is back to holding her own weight while transferring from bed to chair and back.

So the standard doctor's assumption that her disability is irreversible is empirically dis-proven yet a third time:

1- 3rd trimester of pregnancy in 1999 was able to regain use of right hand, reading ability, and walking without any assistance. Vocabulary recovered and surpassed pre-1996 attack deficit.

2- First course of LDN 2007- described in this blog.

3 - Second course of LDN - now.

LDN started again at 4.5 mg

After a 1-1/2 month break, Michele has started again on LDN treatment as of 8-23-2007, going to 4.5mg now from her prior 3.5mg dosing.

So far, no additional spasticity/stiffness, and so far no sleep disturbances - except that last night she rolled onto her left side and nearly went out of bed. And her energy level was noticeably higher today, but with that dramatic 8pm crash that we saw during the last treatment.

Will keep this page updated with the latest and will ave videos of before and during treatment.

Cobra Venom For MS Redux - Time for Another Look

Cobra Venom for MS? Note that this very technical publication provides a good summary of the current knowledge and thinking about MS in addition to describing nicotine's effects on MS (including mention of a nicotine study that does not reflect our empirical knowledge of how it dramatically reduces the effects of Michele's version of MS) and finally alpha-cobratoxin which uses those same nicotinic acetylcholine receptors that we find so useful in ameliorating MS symptoms by hitting them with nicotine (the patch) or ephedrine (primatine mist):

(Adobe PDF document)
http://groups.google.com/group/ourms/web/CobraToxin_MS_ImmunologyReview2006.pdf

Stability - Catamenial Seizures Wane - Re-Starting LDN

So it has been two months since my last post, and I can say that it has been a good two months for the most part.

While the catamenial seizures have waned, with no aura's this past month and no seizures since my last post, Michele has been getting much more difficult to transfer since being off the Low Dose Naltrexone.

The good news is that a recent MRI showed no abnormalities in the pituitary/hypothalamus area, and showed no active lesions in any part of the brain and brain-stem. Of course the extensive MS plaques were very visible and very symmetric throughout the brain - the physical symmetry and locations of damage with this disease has to be a big clue for researchers.

So, with no current lesions, we can get down to dealing with minimizing the effects of the existing damage done in the central and peripheral nervous system.

We have an appointment with a Pennsylvania doctor to renew the prescription for Low Dose Naltrexone this next week, and we are looking forward to again seeing major improvement in Michele's mobility. This time we will make sure she sleeps well while the LDN does its magic.

We have filed a grievance with Kaiser to try to get some advanced and exceptional treatment from neurologists and immunologists who can help to understand why ephedrine, nicotine and LDN have such dramatic and valuable effects on Michele's mobility and quality of life.

If Kaiser can dispense Viagra so that old farts can sport woodies for their trophy wives, then surely some LDN for my young 30-something wife and mother of two school age children is not too much to ask.

Seizures, seizures and more seizures

So last Sunday the four of us were starting to eat a very late breakfast when Michele had about a two minute focal seizure/absence seizure. She was having a more difficult morning, where the prior week she was doing pretty well. In fact the day before, we had gone to Monterey Bay Aquarium and had a lot of fun even though she was showing some increasing signs of something going on - lethargy, sleepiness, irritability, 99 degree temperature.

While Michele was having this seizure, unable to move or talk, she was aware of us around her, and I was busily getting the Ativan/lorazepam from her backpack to put under her tongue. Then for the rest of the day these seizures repeated about once per hour to happening every half-hour. I increased her Keppra and the seizures tamed by about 9PM, although by her heart rate monitor/alarm it looked like she had about a 2 minute seizure again in the middle of the night. She has ictal-tachycardia, meaning that her seizures are usually accompanied by a fast heartrate. I designed a portable heartrate event alarm to alert me or her caregivers to her seizures - prolonged seizures can be deadly.

With the ongoing seizures and the change in meds that Michele's neurologist prescribed the next day, I chose to suspend the used of LDN/Naltrexone for a bit. Well, this week off the LDN treatments has been accompanied by severe increase in disability. I had to brush Michele's teeth today and she can't help with standing anymore. Her left arm is completely paralyzed, swallowing problems are getting severe, the left side of her face is drooping, her speech is difficult, etc.. Much of this may be attributable to the increased meds. We will know pretty quickly, as I resumed the LDN tonight, figuring that all the downer pills that she takes at bedtime should keep her sleeping well enough for the LDN to be able to do its job in the early AM.

Will post more later - Michele calls.

Is it PMS on Steroids - or Something Worse?

Michele has had core temperature regulation problems ever since her first big MS attack in 1993 so I am not surprised that this continues to be a problem. Her ideal temperature is below 98 F degrees, and when it goes above 98.5, the MS damaged area's make themselves known.

It has been a while since my last post, and that is because the past week has been increasingly difficult - due to Michele's higher core temperature, not well controlled by 6-800mg of Advil, and also because of a very 'psychotic' reaction to low blood-sugar. This hypoglycemic rage is easily cured by grabbing the nearest bit of food and waiting for her to absorb it....but it has made for some tense moments in this household. Now I know what my grandma went through when trying to wake me in the mornings for school when my blood-glucose was around 60mg/dl.

The very encouraging part of the past couple of weeks is that even while having problems due to poor thermo-regulation, and having the hypoglycemic rage - Michele is still doing pretty well - tremendously better than a couple of months ago. For instance today, when she was standing up as I was transferring her to her wheelchair, I asked her to take a step and she promptly moved her right foot towards the wheelchair so that I could rotate her to her seat. Also, she grabbed the couple of years of books on CD and had our son put them into her computer and was enjoying her favorite author Mary Higgins-Clark for the better part of today.

She is now taking an increased dose of Keppra -1gram twice daily and that has kept the seizure aura's away except for a couple of days ago when she had to take an Ativan/Lorazepam.

The disturbing part of all this though is this increased emotional volatility. I just had to take a break from writing this entry to go listen to a tirade on my evil intentions and lying while Michele was in tears and redfaced angry. It is midnight and I did get her settled into bed around 10:30 - now she is enraged that I am not in bed too. I can hear her sobbing now through the door. Last week she slammed her hand down on the bed next to me - waking up in another rage-like state. This dark side is the same one that presents when her blood-sugar is low. Oh, it is PMS time, maybe I just need to chill for another week. If LDN turns out to cause 3 week long PMS emotions every month - I don't think the rest of the family can survive.

In light of all of this - I am trying to figure out if it is the MS that has affected a section of Michele's brain, causing this appearance of the dark side, or if this is due to the LDN treatment. Time will tell, I need to go give her 2mg of Ativan to calm her down; she really does need to sleep tonight as tomorrow is our daughter's birthday party at the local ice rink so we need to get up early enough to get Michele ready for a day out.

Goodnight.

Wheelchair transfers are getting easier every day!

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.

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

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.

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) :

• Baclofen
• Keppra
• Tegretol
• (stopped Methotrexate prior to starting the LDN)

Meds that we have to get by other means. We found a neurologist to prescribe the LDN, but we had to get the minocycline from a pharmacy in Mexico.

• 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.

Welcome to our blog!