Response to Zizzle about LDN & a update

Joefnh · Post by **Joefnh** » Thu Mar 27, 2014 3:28 pm

Earlier today Zizzle sent me a nice PM regarding LDN and the autoimmune issues I deal with each day and although I have been quiet on the board lately, I have been lurking for a bit and have more or less followed several topics.

As far as an update, truthfully, overall I am having a fairly tough time right now as we get the meds dialed in and emotionally / physically this (Myasthenia Gravis) has been quite hard to adjust to.

Over the last about 5 years now I have been diagnosed and dealt with a string of autoimmune issues including, Crohns, MC and Anklyosing spondylitis. More recently I was diagnosed with Myasthenia Gravis (MG) which can affect each individual through a range of physical disabilities which can get better or worse over time.

For quite a while I had been taking Imuran which did a great job dealing with the Crohns,MC and AS. Overall though it was not really treating the MG that well. To address this I was switched over to Rituximab which is an IV monoclonal medication usually when combined with methotrexate is used to treat non-hodgkins lymphoma.

So far I have only had the first 3 sessions at a fairly low introductory dose. These past 3 weeks I have been in an active flare which has been making breathing, walking, chewing, swallowing and speaking hard to do. With MG, the antibodies involved destroy the neural receptors on the muscle fibers resulting in significant weakness and paralysis in some cases. As I wait for the dosages to be adjusted and repeated, my functionality has been quite limited. I am able to make it to work only about 50% of the time

So the good side to all of this is that besides MG, the other autoimmune issues, especially the GI issues of MC & Crohns have been quite well controlled are really not a issue at this point. I attribute this mostly to staying on a strict diet that I learned here and for being fastidious about the quality of the foods I purchase. Basically all my meats are from a organic grass fed beef, lamb and the chickens free range on this farm as the cows rotate through the pastures. The feed is all local cut natural feeds, no GMO's and no antibiotics. My diet is kept fairly limited in the number of ingredients, tastes great and is what i have found that my GI system is happy with. Diet is key when it comes to MC and Crohns. Once you find what diet works best you tend to stay with it

Zizzle I certainly have noticed your and the other members discussions about the LDN and it has intrigued me. I have asked both my local neurologist and the group I see in Boston about LDN and the one concern is that it affects the Acetylcholine junctions levels of Acetylcholine esterase inhibitor. The one quite real risk of MG is that you can stop breathing fairly quickly, including in your sleep which tends to make me less of a risk taker when it comes to MG, especially when I am in a major flare up. Lately I have been had the sensation of starving for air a couple of times a day.

Right now to manage the flare up, I am taking 60mg of prednisone for 4 weeks followed by a 4 month slow taper. This will be coupled with high dose (2 grams / kilogram) IVIG (Intravenous Immuno Globulin). I go into the hospital each day next week for those infusions. So far I have found IVIG to be very effective, I call it my liquid energy.

For me whats next is to get a thymectomy which is open heart surgery to remove the thymus which is located just on top of the heart inside the chest cavity. I have spoken to several local members who have had this surgery and it seems that the procedure is well tolerated. You are out of work for about 3 months. The goal is to see a significant reduction in symptoms and in about 17% of the cases, remission.

Overall I am impressed with the research and testing that has been done with LDN by many of the members here. One of the thoughts for me is that once I have the MG under better control is to look into possibly using a low dose as an adjunct therapy. I do need to do some more research into the fine points of LDN and the neuromuscular junction so I can understand the risks / benefits.

Thanks again Zizzle for your note and or thinking of me. I hope you continue to see the positive benefits you have been experiencing.

I do want to leave this note with a positive comment.....Its because of what the generous members of this board have so openly shared over the past few years that I now have the knowledge to maintain a high quality IBD safe diet, but also have learned how important simply having a good attitude helps more than many medications we can take. The best place to deal with a chronic illness is in the mind.

Joe

humbird753 · Post by **humbird753** » Thu Mar 27, 2014 5:31 pm

Hi Joe,

It is good to see you post. I'm sorry you're having a hard time right now. I won't pretend to understand all that you are going through, but please know you are in my thoughts, and I send well wishes your way. The thymectomy surgery you mention sounds promising.

I want to thank you for the note you wrote at the end of your post. For me it is also true that it is ONLY because of the generous members on this board that I can say I am getting my life back. And, I agree that having a good attitude is most helpful for dealing with and even regaining our physical and mental health. I don't know where I would be today without this forum. One of my work-out shirts says, "Attitude is Everything."

Please know you are in my thoughts.

Paula

Deb · Post by **Deb** » Thu Mar 27, 2014 5:50 pm

May God comfort you on this journey, Joe. You're facing more than a lot of us and I pray I'll have the grace you've shown if I ever do. Deb

kayare · Post by **kayare** » Thu Mar 27, 2014 7:22 pm

Hi Joe,

It is so good to see your post. I cannot imagine all that you have faced and are yet to encounter. I am very inspired by your ability to share your knowledge, inspiration, and grace with others while facing your own difficulties. Please know that others, including me, care about you and appreciate all that you have given. It is this generous spirit that has helped so many live their lives to the fullest. I know that it has made all the difference to me. I wish you only the best!

Kathy

Lesley · Post by **Lesley** » Thu Mar 27, 2014 9:54 pm

Joe,
As usual I can only add my thoughts and love to what has been said. I hope Nurse Nestle is taking good care of you when you are home. My doctor told me to be extra affectionate with Licorice when I am feeling crappy. I don't know how I could do that without squashing her. I don't need to tell you to be even more affectionate with your animals. Nurse Nestle will give you the love you deserve.
Take care of yourself, my friend.

CathyMe. · Post by **CathyMe.** » Fri Mar 28, 2014 5:02 am

Joe,
I've been thinking of you lately and am so glad that you posted an update. Big hugs and positive, healing thoughts sent your way.

JLH · Post by **JLH** » Fri Mar 28, 2014 7:53 am

It's good to hear from you but, of course, I wish your news was much better. Sorry you are having such a bad time. I hope you have some improvement very soon.

:bigbighug:

Polly · Post by **Polly** » Fri Mar 28, 2014 8:01 am

Joe,

Love,

Polly

Post by **tex** » Fri Mar 28, 2014 10:14 am

You're always in my thoughts, Joe.

Thanks for the update.

Sending my best.

Tex

Zizzle · Post by **Zizzle** » Fri Mar 28, 2014 10:55 am

Joe,
I did a search for MG in one of my LDN Facebook groups and came up with this thread. I'll try to find out more, and will get my hands on the testimonial that's in the works.

Esther Thorpe ‎LDN Research Trust - Low Dose Naltrexone
March 11 at 1:45pm ·
Just a quick message to say I have been on LDN for just over a week for Myasthenia Gravis. So far I have felt slightly less tired but haven't got up to full dose yet. I'll keep you updated. x

Rotraud Skalban hi esther, i am on ldn since 16. of january. my dose is 2mg. i have more power, yeah. I have mg, too
March 11 at 2:44pm · Like · 2

Esther Thorpe Hi Rotraud. I was trying to remember your name to ask you how you were doing. Did your symptoms get worse before they got better? Kind Regards x
March 11 at 2:46pm · Like

Rotraud Skalban no I felt immediately better the next day,unbelievable I started with 1.5 mg, after a few days I tried 3mg, but that was the wrong dose, my symptoms get worse. so back to the beginning and now 2mg. But I have had two times, for 2 or 3 days, I felt the muscle weakness again. but it change to a good time again. I think, when it is getting worse, there is something in my body that interfere.
March 11 at 3:07pm · Like

Esther Thorpe thank you for reply. I have started at 1mg and increased gradually to 3mg..just really want my eyes to be straight!
March 11 at 3:13pm · Like · 2

Margreet Veenendaal-zandvliet Someone in our Dutch LDN group with Myasthenia Gravis does very very well on LDN..he says he has his life back
March 11 at 3:21pm · Like · 2

Rotraud Skalban I think, I know who it is lol
March 11 at 3:32pm · Edited · Like · 2

Margreet Veenendaal-zandvliet You do?
March 11 at 4:58pm · Like

John Elst LDN works amazing for my MG.
March 12 at 5:47pm · Like · 3

Margreet Veenendaal-zandvliet yeaah there he is!!
March 12 at 5:58pm · Like · 3

Linda Elsegood well done maybe I can interview you in a few months?
March 13 at 4:44pm · Edited · Like · 1

Phyllis Seals John Elst or anyone who's successfully been on LDN for a while, just let me know if you're interested in doing a testimonial with Linda and I'll get things going.
March 13 at 5:36pm · Edited · Like · 1

John Elst I did already
March 13 at 5:51pm · Like · 1

Phyllis Seals Great...thanks John!

Zizzle · Post by **Zizzle** » Fri Mar 28, 2014 11:31 am

Joe,
Here's an interesting article on the use of LDN in Complex Regional Pain Syndromes and related CNS-related conditions.

http://link.springer.com/article/10.100 ... ltext.html

There is one caution in the discussion:

Glial attenuators are likely to provide benefits in controlling CNS neuroinflammation that arises from periphery nerve injury, CNS injury, or autoimmune attack on CNS targets. However, it is possible that inhibiting CNS neuroinflammation with glial attenuators might be deleterious to immuno-compromised individuals, or individuals with an ongoing viral or bacterial infection. However, naltrexone has been used in HVC and HIV patients to treat opioid addiction, without causing major complications (Mitchell et al. 2012). In general, before utilizing LDN in a given individual, practitioners should be aware that atypical cases of CRPS and movement disorders have been linked to infectious agents, such as Borrelia burgdorferi (Lyme disease) (Sibanc and Lesnicar 2002) and parvovirus B19 (Fong and de Sousa 2006; Grillo and da Silva 2009). The safety of using LDN to attenuate neuroinflammation, pain, and movement disorders, in these particular infectious diseases is unknown.

Conclusion

Our use of LDN treatment for CRPS patients was motivated by a presumed neuroinflammatory etiology for long-standing CRPS symptoms. The remission of pain and dystonic spasms in Case 1, as well a remission of all CRPS symptoms (including fixed dystonia) in Case 2, provide evidence that a multi-modal interventional approach, which includes low-dose naltrexone (a known glial attenuator), should be considered as a treatment option for the treatment of CRPS patients, particularly those patients with dystonic movement disorders.

Sheila · Post by **Sheila** » Fri Mar 28, 2014 6:56 pm

Thanks for the update, Joe and for sharing your journey with us. I can't add anything to what others have said so well. I am hoping and praying there will be real relief for you soon. I wish I could give you a hug in person.

:bigbighug:

Sheila W

Joefnh · Post by **Joefnh** » Fri Mar 28, 2014 8:26 pm

Thanks for all of the well wishes and encouragement, it really does help.

Zizzle I am going to comment on your LDN findings in your main LDN thread as I hope the content will be more meaningful in that context.

One of the thoughts I have been having is MG any different than other chronic diseases? I'm not so sure it is. We have people here who have had to change their lives around to do nothing more than have some semblance of normality. There are many members here that have very restricted diets and that require daily medications just just be able to function.

I think in any chronic illness, depending on the severity, maintaing some form of the life we used to know seems like a losing battle at times. One of lifes lessons for me has been simple acceptance of what is and simply work on defining a 'new normal' We already do that with MC and FMS, Crohn's or UC...

The key to coping with any chronic illness lies in acceptance of what is and allowing ourselves to adjust. For me I fought this for many months and would not accept that this is now simply the reality I must deal with. When we try and fight the inevitable is when we exhaust ourselves emotionally and even physically, not a good idea when that strenght is needed to try and get better.

Lesley · Post by **Lesley** » Fri Mar 28, 2014 9:12 pm

Joe - so true and so well put! It's hard to reach that place, but when we do things get so much easier.

carolm · Post by **carolm** » Fri Mar 28, 2014 9:31 pm

HI Joe,
I was thinking about you the other day but didn't want to seem nosy so I hesitated to ask how you were doing. I'm glad you posted, and as the others have said just know you are in my thoughts and prayers.

Keep us posted. Wishing you the best.

Carol