Diets, MS, and Endorphins

[CaroleK]

I expected it, but still disappointing

Myoak wrote:

Be prepared that your neuro may be very, very negative if you want to try LDN. All doctors know something about naltrexone but often very little about low dose naltrexone. Typically, doctors don’t deal with LDN, therefore know little about it and are rarely in a mood to hear more from a patient.

But if you are gentle in explaining even if wrong you would like to try LDN for 3-6 months they may agree to monitor you and take another MRI in six months. Sadly, be prepared to be abandoned and told to go elsewhere.
Maybe LDN won’t work for you and Tysabri, or another DMT will have to be considered so it would be great if your current neuro would agree to monitor you, or see you again in six months.

Myoak, you were right: my neuro was very negative about the whole LDN thing. She wouldn't prescribe me Copaxone as she says my MS is too aggressive (I had about six new lesions at the time of the last MRI and a few enhancing ones) and said she hadn't heard of LDN but wouldn't prescribe it if it wasn't a DMD for MS. I have a call into the neuro whom I had contacted for a second opinion on possible treatment options a few weeks back. She seemed open, when I met her, to Copaxone and prescribing LDN...I guess I'll have to wait until I hear back to see if this pans out.

My current neuro also asked that I insist on having an MRI done in 3 months because she was worried about several lesions on my thoracic spine enhancing which might, as she said, leave me in a wheelchair (I am, luckily, very mobile now..I can't run but I try to walk 3 miles 4-5 days a week). I told her I wanted to give LDN and Copaxone 6 months. She said not to bother stopping Copaxone after 6 months because it takes longer than that to work. She seemed very skeptical about the LDN in general. I left her office feeling scared and a bit discouraged. I'm hoping I hear from neuro #2 soon.

[Myoak]

Carolek,

Been wondering how things have progressed for you. And want to encourage you to keep going toward the goal of good health. Tysabri works great for many people so it is a legit option. But some MSers have success with other things, also.

It was a great pleasure meeting Linda Elsegood (you can google her) in Chicago face to face. She is a MSer who told me she was in a wheelchair 10 years ago, before taking LDN. I watched as she had no trouble at all walking up and down the stairs in the conference auditorium. Little wonder that she is an LDN advocate. Not everyone has her experience but some do. Primarily, LDN seems to slow progression in MS and improve QOL; scientific studies and patient testimony support those ideas. But there are other important things to consider which you can do right now to improve your health.

Vitamin D is a fat soluble vitamin so it needs food or drink having fat or oil to be absorbed. That is really an important point. The RDA for Vitamin D is enough to prevent rickets, but not enough for best health according to recent research. We take about 3,000 IU per day. I know one neurologist who takes 5,000 IU per day as does his wife.

Vitamin D promotes calcium absorption. Of course, if you take calcium be sure it is calcium citrate not carbonate because very little of the carbonate gets absorbed. Also, it is important to take Vitamin B2 (make sure it is Menaquinone). Vitamin K2 escorts calcium to hard tissue (bones, teeth). If B2 is lacking calcium gets deposited in soft tissue such as arteries and serious cardiovascular problems can result. Calcification of arteries probably causes more cardiovascular problems than fat. Kale is an outstanding source of vitamin K2.

I trust you are aware, or are becoming familiar with the recent research showing how important adequate levels of Vitamin D3 are. Great article… Higher Vitamin D Levels Linked to Less MS Activityhttp://www.medpagetoday.com/MeetingC.../ECTRIMS/42036

“In his oral platform presentation at the annual meeting of the European Committee for Treatment and Research in Multiple Sclerosis, Ascherio also found that higher baseline differences in 25-hydroxyvitamin D levels were associated with:
• A 57% lower relapse rate (P=0.03).
• A 25% lower increase in T2 lesion volume (P=0.00004).
• A 0.41% lower yearly loss in brain volume (P=0.07) from 12 to 60 months.
• Fewer active lesions at MRI (Hazard ratio 0.73, P=0.002).
• A lower increase in T2 lesion volume (difference = - 9% per year, P=0.008).
• A lower rate of brain loss (0.32% versus 0.66% per year, P=0.005)
• Lower disability demonstrated by a -.17-point reduction in the Expanded Disability Status Scale score (P=0.004) during the subsequent 4 years.”

Pretty amazing for just supplementing with Vitamin D.

Let us know what is happening when you can. Best to you and your household!

[Myoak]

Carolek,

You do not need to rule out the possibility of taking LDN even if you are considering Tysabri.

Please review 3 YouTube videos by Joseph Wouk where he talks about his personal experience with Tysabri and LDN. If you visit YouTube you can find outstanding 10 minute videos under Joseph Wouk Google LDN Part 1, Part 2 and Part 3.

Best of luck. Keep in touch if you can, we are all interested in how you are doing.

[Kronk]

There are countless studies that show Vitamin D helps with MS. But none of them explain the mechanism of action?

I have heard that Vit D reduces lymphocytes, feeds the KREBs cycle, and one of the more interesting ones is that it significantly boosts levels of Insulin Growth Hormone.

Studies have shown and demonstrated that IGF-1 can stimulate the protective covering around nerves known as the myelin sheath. In a degenerative disease like Multiple Sclerosis, ALS or Lou Gehrig's disease, damage around the sheath stops signals from being transmitted between the brain and nerves.

IGF-1 has been found to regrow these sheaths according to scientists at the University of Michigan. It was discovered that IGF-1 was the most effective of the growth factors in inducing the growth of the myelin sheath and neuron cell. The researchers also found that IGF-1 helps the nerves remain normal and regrow even when diabetic conditions were present. Therapeutic administration with neurotrophic proteins (IGF I) is associated with the potential reversal of degeneration of spinal cord motor neuron axons in certain peripheral neuropathies.

It should be noted that high levels of IGF-1 are also associated with higher cancer risk. But that fact that it is often found in high protein, high fat foods such as red meat would make this logical. So it may be the carrier and not the IGF-1 that is the issue.

[Myoak]

My bad for keyboarding B2 when I should have entered K2 as the vitamin in my previous post.

Kronk, "There are countless studies that show Vitamin D helps with MS. But none of them explain the mechanism of action?"

Your post was informative, thank you!

Sorry I can't point to sources which explain the mechanism of action of Vitamin D. But you are correct that there is research and opinion which suggests both the incidence and severity of MS are related to D deficiency. Of course, there are other factors are at play also, as you know.

[CaroleK]

Thank you, Myoak

Myoak: I don't know how I missed your additional posts addressed to me, but somehow I did. Thank you so much for this information. I will check out the Youtube videos regarding taking Tysabri and LDN. I am also here looking at the calcium (and magnesium and zinc) supplement that I'm taking and now notice that it says "calcium carbonate and calcium gluconate." I'll order the kind you recommend.

Update: I have been taking LDN (my second neuro did prescribe it, along with Copaxone) 300 mg daily since December. I have noticed a slight decrease in my spasticity and a bit with my brain fog too. However, I am also slated to see Dr. Burt in Chicago next month for consideration in the HSCT treatment he offers there to see if I qualify for his Phase III study. If I do not qualify, (or get put in the 'control' arm of the study) I will continue on the LDN/Copaxone and hope for the best. Dr. Burt's office will take MRIs when I go and that will show if I have any new and/or enhancing lesions. If I don't, that means (at least in my mind) that the LDN is working and will also automatically disqualify me for the study.

[Myoak]

CaroleK, I bet you meant to say 3 mg per day of LDN, right? I’m glad you could find someone knowledgeable enough to prescribe LDN, congrats. Best wishes for getting accepted in Chicago for HSCT. Really a very, very promising treatment, IMO. Love to hear how things unfold; if you qualified, didn’t qualify and why, if you don’t mind sharing about it. I think a bunch of people here are interested.

Kronk, perhaps a slight step toward understanding the mechanism of Vit D is contained in the dynamite study below. Following Michael Pender’s study is a link to his recent success treating a MSer according to the hypothesis he presents in this study.

A fraction of his hypothesis from the study abstract related to Vit D… “It is proposed that deprivation of sunlight and vitamin D at higher latitudes facilitates the development of autoimmune diseases by aggravating the CD8+ T-Cell deficiency and thereby further impairing control of EBV. This hypothesis makes predictions which can be tested, including the prevention and successful treatment of chronic autoimmune diseases by controlling EBV infection.”

Google the study title if the link doesn't work or gets scrubbed...

CD8+ T-Cell Deficiency, Epstein-Barr Virus Infection, Vitamin D Deficiency, and Steps to Autoimmunity: A Unifying Hypothesis

http://www.hindawi.com/journals/ad/2012/189096/

Pender’s success in treating MS…

http://msqld.org.au/homepage/latest-...r-breakthrough

[Kronk]

The more I read about the EBV virus angle the more iteresting it is. While not the whole story as 95% of the human race has EBV its activation in people susceptable to MS makes sense. A lot of parrallels can be drawn between MS and Chronic Active Epstein-Barr Virus Disease (CAEBV). They have even used MS meds such as the interferons on CAEBV patients with some success.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2776035/

The GeNeuro corporation in Switzerland is actively looking into EBV and MS. The link below shows the evidence they have found to tie MSRV and MS
http://www.geneuro.com/en/technologi...ic_ms_msrv.php

Also as I am always trying to tie together various successful methods of treating MS, the link below shows clear ties between EBV and Fatty Acids which are reduced in OMS, Swank and others.
http://www.ncbi.nlm.nih.gov/pubmed/15047835

"...These results suggest that cellular Fatty Acid Synthase (FAS) activity is important for induction of Z transcription from the intact latent EBV genome, perhaps reflecting the involvement of lipid-derived signaling pathways or palmitoylated proteins. Furthermore, using FAS inhibitors may be a completely novel approach for blocking the lytic form of EBV replication..."
Palmitoylated proteins or palmitic acid is one of the highest on Dr. Swanks forbidden foods list.

[MarySunshine]

LDN 4mg has helped reduce my chronic central pain. It was a gradual reduction; easier to see in hindsight and when I had to change pharmacies, I had an increase in pain from the New mixture. My naturopath says that it works better with a gluten free, low sugar, chemical free diet. I follow the diet, too.

I have had a severe relapse on LDN, so personally I do not trust it to work alone. However, I'm a believer.