low-dose naltrexone for CFIDS

Hi everyone --

I've been asked about low-dose naltrexone as a treatment option, and there are some excellent resources for it on the web. But I thought I'd provide a summary here of what it is about, in case there are specific questions. I've been taking LDN since August of 2013, and it has reversed 95% of the fatigue symptoms (including brain fog), perhaps 90% of the sudden-onset arthritis, and greatly reduced the discomfort from IBS, depression, and some other, secondary symptoms.

Naltrexone was patented in 1967 as a means to treat alcoholic patients and those with chemical dependencies. It blocks the same opioid cell receptors that the abused substances bind to, creating the "high" the patients seek. In a specific low dose of naltrexone, this same action only occurs for a couple of hours at night when sleeping. This is the time period when most of the body's endorphins are synthesized, and when these cell receptors are blocked, the body thinks it has a deficiency of endorphins. In response, cells are signaled to produce more receptors, they become sensitized even further, plus more endorphins are produced as well. This video helps visualize the process: /www.youtube.com/watch?v=z0p0ykSzy9o&t=24s

Endorphins are a critical component of the body's systems, and reduce inflammation, provide pain relief, and also improve electrical signals that pass through the central nervous system. As such, it can be said that endorphins not only make you feel better, but also aid in the healing process.

CFIDS is an autoimmune disorder that primarily affects cell mitochondria, where the enzyme ATP is produced. Because of the increased amount of endorphins throughout the day, the cells can function more normally, and produce adequate amounts of ATP. Increased endorphins is also helpful for other autoimmune conditions, and, as I noted, helped my arthritis -- also an autoimmune disorder. LDN is also being studied as an adjunct to some forms of cancer treatments, because of its regulating effect on cell division.

Before a patient can begin LDN treatment, he/she must stop all use of opioid medication, for a period of 10-30 days beforehand. The reason for this is the opioid medication substitutes for the body's own endorphins, since it competes for the same cell receptors. The body reaches an "equilibrium state" and reduces the amount of endorphins it makes each night while you sleep, because it adjusts to the general amount of opioids it has become accustomed to. By stopping the opiate medication, the body will eventually reach a new equilibrium of endorphins, and even start making more cell receptors if necessary.

At this point, the LDN therapy can begin. Natrexone itself is only formulated in a 50mg size, and must be compounded into lower doses. I'm in no way affiliated with Skip's Pharmacy, but I highly recommend getting LDN from this source. Skip takes LDN himself, and only uses the best sources for the drug, as well as the best compounding ingredient. The first order of LDN capsules will be a quantity of 90 in a 1.5mg size, because it must be titrated upwards. For the first 30 days, 1.5mg is taken before bed. Days 31-60 two capsules, of 3.0mg total, are taken. At this point, one is ready for the standard 4.5mg dose, and results should begin to be seen shortly thereafter. The reason for titrating the LDN is because of its only side-effect, sleep disruption. Some people note this, and others experience no issues.

I believe LDN has become a little more accepted in the past four years or so, when I first began investigating it. The initial doctor who prescribed it for me retired soon after, but I discovered that once I began taking it, several doctors I visited locally after that point offered to continue the prescription for me. It all depends upon how open-minded your doctor is. You may find this link helpful before broaching the subject with him or her: www.lowdosenaltrexone.org/gazorpa/PatientGuide.html I think if you have a good relationship with your doctor, it's very likely he will write it for you. There are also lists available of doctors known to prescribe LDN, and I believe Skip may have such a list, too.

One of the reasons I'm such a fan of LDN is because it has zero side effects (aside from some possible sleep disruption), and the benefits of the healing that can take place are because of your own endorphin production. I don't think there is any other prescription drug out there that can claim this same sort of benefit, at such a small daily dose. There is no "Band-Aid effect," of covering up symptoms, etc. Your body is doing its own pain relief and healing.

I hope this is helpful.

Bruce

Hi Susie --

Thanks for your thoughts. I'd like to do as much as I can to get the word out about LDN. There's nothing really "new" about it, of course, but neither doctors nor pharmaceutical companies have any incentive to promote it because it is a generic now, and this is also an off-label use of the drug. I know there are a lot of folks out there suffering, and unless you spend a lot of time surfing the web, you may not run across the connection between LDN, CFIDS, or other autoimmune disorders.

A little more about the sleep disruption. Endorphins also influence serotonin in the brain, which directly affects sleep. This is the factor that affects most people who experience this side effect, although it is temporary. Some people experience wild and vivid dreams. The doctor who first prescribed it to me said, "Buy a notebook to write down your dreams and turn them into Hollywood movie scripts!"

Another way that sleep can be disrupted is if you are in a lot of pain. When the endorphins are blocked in the middle of the night, all-of-a-sudden there is no longer any pain relief, and it may be enough to wake you. This happened once to me, when I believe I jammed my knee after falling. For two weeks, I'd wake up each night in quite a bit of pain, which I managed with ibuprofen. Once the healing took place, I was back on a normal routine again.

Bruce

Hi Connie --

I'm not sure why you posted in this LDN thread, but I would not consider this medication for what you are currently experiencing. Chronic Fatigue Syndrome (the message board you posted on) is a specific disease with a set of variable symptoms, but doesn't appear to be relevant in your case.

Many folks with autoimmune conditions, including CFIDS, experience chills periodically, as there is a metabolic connection associated with cell mitochondria that precipitates this symptom. That said, based upon what you have described, I would not necessarily point to autoimmunity as your issue, although no one but your doctor can make that determination.

Since you mention the flu, I think it's highly likely you are still experiencing infection. Flu symptoms are highly individual, with some experiencing rapid onset and serious consequences, others 3-7 days of symptoms before full recovery, and others lingering symptoms for weeks. The virus can knock out the immune system such that it can't quite eradicate the invasion completely, which leads to the annoying "yo-yo" effect of feeling better for a day or two, then experiencing a new wave of symptoms.

You mention the stresses and responsibilities of work and children. In your situation, probably the best remedy is sleep, although I understand it might be a luxury in short supply. Sleep is the best way to support an overworked immune system, but, when you can't rely upon rest, just take things down a notch or two, and don't pressure yourself.

The fact that you are under professional observation is in your favor.

Best wishes.

Bruce

Hi again, Connie --

You just provided more information to your case. I am particularly noting your headaches, especially in relationship to your fatigue symptoms. I have a lot of experience with chronic headaches, and I wouldn't select either Lyrica or Elavil for my first choice in headache management.

It is possible that a viral infection can precipitate CFIDS, although the flu is not one of the viruses generally implicated. Please look on this message board for the thread, "CFIDS trigger = formaldehyde," for more information.

Keep an open mind. It's possible that you may have had chemical exposure.

Bruce

Hi Connie --

I've been struggling with CFIDS and a whole host of secondary symptoms for several years. Since I was getting absolutely no help whatsoever from doctors in the beginning, I had to become my own advocate and educate myself. I urge you, and everyone else struggling with an undiagnosed challenge, to do the same.

I have heard of your symptoms, but that's part of the problem, because the symptoms you mention can be attributed to any number of different conditions. What might be a little helpful is for you to describe your fatigue a little. Would you describe it as muscular fatigue, and a general tiredness, or does it cross the line into being a CNS fatigue as well...including cognitive sluggishness?

I'm not sure what to make of the electrical feelings running through your upper body and arms. I have on occasion experienced little "jolts" for lack of a better word, but nothing I would describe as a regularly-occurring symptom. Chills is something else, and this is described frequently by those with autoimmune conditions...but I would not jump the gun and diagnose yourself in this way. It could be just the flu.

You mentioned a rash. Might it be described as a malar (or butterfly) rash across your nose and cheeks?

I think I would still lean towards a persistent flu virus, as we are in the height of flu season right now, but don't discount other possibilities, if you feel this is a more acute problem.

Why would your doctor prescribe Elavil and/or Lyrica for headaches? That makes little sense to me, unless he was trying to treat something else at the same time. Elavil can be used as a prophylactic headache treatment, but it is only marginally beneficial in a small group of patients. Elavil is usually used as an antidepressant.

If your headaches are truly debilitating, you should get a prescription for a triptan. There are several, and there are two subcategories -- fast acting with short half-life, and slow acting with longer half-life. Must people use sumatriptan, but it doesn't work for me, and the main reason I don't like it is it is generally used in a 50mg dose. I prefer naratriptan, which is 2.5mg. It is slower acting, but the grogginess is minimal, and it can last nearly 48 hours. I feel more normal while it is in my system, and it is quite effective. Two other generics are zolmitriptan and rizatriptan which are available as lozenges and work more quickly, but they also cause heavier grogginess and would prevent you from safe driving, for example.

I think you need to try to relax and turn your thoughts away from getting too anxious, while you're waiting on the blood tests. I think they might help identify something, or at least eliminate possibilities. I know the waiting is the hardest part, while you're suffering. I'm sorry about that. In the meantime, see if you can get a better prescription for the headaches, if they are really bad. A bone-crushing headache can make life difficult to face.

Bruce

Hi Connie --

With the additional information you provided about your surgery, I understand now about the Lyrica and Elavil. I am not so confident about triptans for the headaches you are experiencing. If I understand correctly, your headache pain is from pressure points against nerves, which the surgery attempted to alleviate. Triptans are vasoconstrictors, which doesn't appear to be an issue in your case. Many headaches are caused by inflammation of CNS tissue and/or blood vessels, and the triptans constrict those blood vessels. But they won't do anything about irritated nerves/pressure points.

There are other anti-inflammatory meds for headaches that may be more appropriate in your case. Corticosteroids is one option, and there is another formulation based upon the old Midrin brandname that may be better choices. Discuss these with your doctor.

The rash you described definitely sounds like some sort of infection, and not an autoimmune symptom.

One thing that can happen with viruses is that they will "encapsulate" and basically hide in the CNS, protected by the tissues that make up the blood-brain barrier. Most drugs can't cross this barrier, at least anti-virals. Periodically, these viruses will reappear and reinfect...possibly even years after the first infection. This is pure conjecture on my part, but perhaps your recent bout with flu reactivated Epstein-Barr or some other HPV.

Try to do something enjoyable with your family, and focus on the good in your life!

Bruce

Good news! Take it easy this weekend, enjoy your family, and you'll be back to your normal self in no time!

Bruce

Big Pharma has gotten in on LDN. They released a new diet pill with LDN in it.