Greetings Sjoggie-Mates. It has indeed been a long time since my last post. That is probably because my head has been occupying a different mental space. It is still attached to my body, but is not being allowed to control my illness. That is, I am sick of being sick and the ever frustrating doctor-patient interactions that have plagued my life for so long.
We are all in search of meaningful answers for our better health. Some of the solutions that we try may be helpful, but are typically lacking on many levels. With the small amount of real success in battling our conditions, it is no wonder that we find ourselves down in the dumps. But I am singing a new tune that I just have to share with you. I am excited about it and I want you to be equally as excited.
The Starting Point..
Or should I say the languishing point? As with many of you, we live with a tremendous amount of pain from our autoimmune issues..fibromyalgia; chronic pain syndrome, etc. Who knows what causes this chronic pain or more importantly..how to get rid of it. The first line of attack typically thrown at me, were opioids. Pain meds seemed to be the only relief I could get and as such, lived on them for years (a Fentanyl patch & pain pills for breakthrough pain). I didn’t want to be taking pain meds, but I also needed to function in a job full-time. Between the overwhelming fatigue and chronic pain, it seemed like my only option. Until now.
Low Dose Naltrexone
Some of you may be familiar with a drug called Naltrexone (pronounced Nal-Trex-Own). Naltrexone is a drug that has been used since the 80’s for primarily dealing with drug users who overdose. The drug was approved through the FDA in the 1980’s and is typically administered at 50mg or above for the intent of stopping the effects of drugs or alcohol. What was discovered however, is that the drug, when given at very low doses, is very effective for a multitude of various illnesses (autoimmune illness being at the top of the list). In order to start this medication, I had to be off of all opiates. I was willing to go through the withdrawal from the pain meds to try it. Based on all of my research, I knew that the LDN would help me on at least one level or more, and I was right!!
Who Is That Woman?
With any new medication, one should research any/all potential side effects. At a maximum dosage of 4.5 mg for low dose Naltrexone, the only possible side effect was possible vivid dreaming (which I would welcome, but it has not happened). What has happened since starting the drug 3 weeks ago? I have more energy than I have had in ages. I am sleeping very soundly. Let’s just say that my GI function has vastly improved and my pain is also much improved (not absent), but better. I have read that the drug can take awhile to help much like many of us faced with Plaquenil. I am titrating down on my prednisone & will be off of it soon. My goal is also to lose the Plaquenil (there’s just something I don’t love about losing large clumps of hair in the shower every morning). I was shocked when I read the research about the amazing success stories of people treated with LDN for a large variety of conditions, including cancer. Yes, cancer. Please read the expert interview of Dr. Burt Berkson on his experience with treating multiple cases of terminal cancer patients and autoimmune conditions: https://www.ldnscience.org/resources/interviews/interview-burton-berkson
Another wonderful resource for LDN is: www.LDNresearchtrust.org
LDN Even Helps Animals!
During my research about LDN, my mother called me one night, upset about her cat, Yeti. Yeti has a history of pancreatitis and my mom had been told that he had a tumor in his pancreas. Yeti was waxing and waning and the vet had even said that my mom might need to considering putting the cat down. I happened to be on my Ipad when she called me, so I googled whether LDN is being used with animals? And the answer is yes! With my continued research I found a vet in NJ who is doing a lot of work with LDN and pets. She explained that some of the pets she tried the LDN with, it had not worked for. But for most pets, it had helped a lot and she also had a handful of miraculous pet stories where the LDN had actually made tumors disappear or stop growing in some animals. It was worth a shot. I called every Holistic Vet in Port Richey, Florida (where my mom lives) and the surrounding areas to see if any vet was using the LDN for pets that they treat? They were not. I contacted every compounding pharmacy in the same areas to see if they had any vets prescribing LDN for animals? They did not. And finally, I wrote a letter to my mom’s vet urging him (as a last resort) to please try the LDN. He agreed. The cat has been on his LDN about as long as I have (3 weeks). My mom reports that the cat is now eating, playing and moving around more than he had previously been doing before the LDN.
What Have You Got To Lose?
This was an easy answer for me (and probably for most of us Sjoggies)…What’s to lose..pain, fatigue, depression, poor functioning…yada yada yada. But with such low risk and no interaction with other drugs, the biggest hurdle is finding a physician that will be agreeable to let you try it. I was able to work with my doctor to start the LDN. But because this treatment is not yet mainstream, you may have a doc who is likely to balk at the request. Fear not, there is a section on the LDN site for you to find an LDN doc in your area: https://www.ldnscience.org/patients/find-a-doctor
The tele-docs tend to be more expensive and are likely not covered by insurance (just my guess). But if you can find a physician that will work with your insurance, that is best. Now for the actual med. Because LDN is typically prescribed at 50mg or more, your pharmacy is unlikely to carry low dosage amounts of LDN (such as 4.5 mg and below). This makes a compounding pharmacy necessary (my insurance does not cover this..but for most prescriptions, the cost is between $30.00 – $50.00). OR…as my internist friend does (she both prescribes & takes LDN), she gets the 50 mg pills & dilutes them with distilled water. She takes 4.5 LDN liquid each night. The cost of the medication when diluted, cost about a penny a day vs. approx. $1.00 a day when compounded. My doc wouldn’t go for the diluted route..no worries, I’ll take it anyway I can get it! And folks, I will never be without this drug. By the way, my internist friend also feels very strongly that this low dose naltrexone could be a huge factor in helping to alleviate the opiate crisis in our country. Some doctors are suggesting that many people have an endorphin deficit which could lead to self-medicating and addiction. By treating people with LDN, it may provide the necessary endorphins to make everyone feel great. It has definitely picked up my mood!
Please RESEARCH This Drug!
Everyone must travel his or her own journey in dealing with their autoimmune illness(es). I would never presume to tell anyone how or what they should do to treat their symptoms. But I will strongly encourage you to take the time to research this medication. It appears to be the most benign drug I have ever been on and has the most potential to help me in many ways and is already doing that. I truly hope that this information will help you.
Here’s to your research!