Moving on - learning from past trials....

So we have learned from past trials that Nicotine, Naltrexone, and some Steroids will recover some of Michele's lost functions. Cannibinoids have a similar effect. I am looking into some studies in "molecular mimickry" as it relates to gut bacteria and it looks like there is a very high possibility that some gut bacteria are triggering the chronic hyper-inflammatory situation that exacerbate's Michele's MS. Her constant battle with low grade fever, the periodic rash on the upper left of her chest and back, and that certain anti-inflammatory drugs seem to help...

I will update this blog again when we start on a course of intense antibiotic therapy to eliminate the bad, then re-seeding of the gut with transplanted colonies from a healthy donor.

So to recap on past trial with Naltrexone - yes there was a temporary benefit - but it had the unbearable side effect of night time psychosis, and I was happy that Michele was not able to walk or get herself out of bed to cause me harm.

Nicotine - helped for short bursts to recover arm movement, but side effects of stomach upset and getting amped up on nicotine made this a temporary solution.

Cannibinoids/Medical Marijuana - is the only current solution to the trigeminal neuralgia that Michele has now, replacing the doctor prescribed Vicodin and Lorazepam that suppress her already labored breathing. Looking for Mary Jane that has less of a high while still relieving the spasticity and intense nerve pain.

Michele is down to one barely working hand - her right hand, and has difficulty breathing, no leg use and still has monthly seizure clusters.

Will post updates as I have time....

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.