low-dose naltrexone for CFIDS

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bcfromfl
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Date Joined Nov 2011
Total Posts : 417
   Posted 2/3/2017 9:04 AM (GMT -7)   
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

straydog
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Date Joined Feb 2003
Total Posts : 15290
   Posted 2/3/2017 4:03 PM (GMT -7)   
Bruce, I happened to run across your post about you being on LDN with success. That is wonderful. LDN is being used now for many different medical conditions. Please try to update here when you can.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 2/3/2017 5:14 PM (GMT -7)   
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

Cperna
New Member


Date Joined Jan 2017
Total Posts : 10
   Posted 2/10/2017 7:13 AM (GMT -7)   
Hi,

I am new to this sight, and am hoping someone can identify with my symptoms. I had the flu 5 weeks ago (labs stated type A). All I had was a bad runny nose, and felt weak and achy, for a few days. Then. I become incredible sick with these chilling sensations, running through my body and some tingling into my legs. The chills never end, and yet I am not cold. I have been to the E.R., infectious disease, neurologist, and finally, a hematologist. My labs are perfectly normal, but she is now testing for all sorts of deficiencies. It might take 2 weeks to find out. She also gave me a B-12 shot, but no change. I am terrified I will never get rid of these chills and it makes each day unbearable. I work FT and have 3 kids. I am useless, and she said if things come back normal. I probably have Post Viral Syndrome. I worked out 2 hours per day, 7 days per week. Now, I feel sickly, and these constant shivers are horrific. Please tell me if anyone has this, and what I can do yo help myself get better. Thank you.

Connie

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 2/10/2017 8:44 AM (GMT -7)   
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

Cperna
New Member


Date Joined Jan 2017
Total Posts : 10
   Posted 2/10/2017 9:07 AM (GMT -7)   
Thank you for that response. My runny nose was for 4 days, then weakness and aches. But, for 5 weeks now, I feel like crap. It feels like it has taken over my body. I can't do anything except sit at my desk at the office, or get on the couch at home. It's not so much fatigue, as it weakness, and this chilling going through my veins or bones (I can't tell). I have been tested for everything, and am praying its an extention of the flu, and that I got really bad and weird symptoms, that are different for me, due to the fact that I am on a lot of lyrica and elavil for headache and occipital nerve pain. I am wondering if the flu triggered my body to reject my lyrica (450 mgs per day). I am trying to reduce it, and have by 25 mgs (My head pain is flaring, even from that small reduction), but I am going to attempt to get down to 400 mg a day. I really appreciate your feedback, as I feel so sickly, that I am begging for an answer.

Thanks

Connie

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 2/10/2017 10:38 AM (GMT -7)   
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

Cperna
New Member


Date Joined Jan 2017
Total Posts : 10
   Posted 2/10/2017 5:42 PM (GMT -7)   
Bruce,

You seem to have a wealth of knowledge, so if you don't mind, I will ask you a few things. I am so sick with these chilling/electrical feelings running through my upper body and arms. I am very weak, and these symptoms don't change.I am waiting on massive blood tests run by a hematologist. She is testing beyond the basics. She is testing for deficiencies and metals etc., as all of my routine labs are normal. I can live with fatigue for a while. Even though I used to work out 2 hours per day. I am getting hopeless, and very anxious. Each day, I wake up feeling the same, and can hardly get out of the door, to attempt to work. I run radiology facilites, and love my job, but cannot last much longer. I have never had the flu before, and am on lyrica and elavil. Have you heard of my symptoms before? I know I had flu, strand A, and had a bad rash last week, almost like chicken pox, but only my PC thought that's what it was. I just need to either accept this is an extension of a really crapty flu, or am I correct in thinking something feels really wrong. I even had a neuro consult. He said I am fine, in that regard, and didn't think my meds had anything to do with my feelings. I need help...or advice, or just support. I am scared to death I will live with these horrible feelings. Thanks...Connie

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 2/10/2017 6:30 PM (GMT -7)   
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

Cperna
New Member


Date Joined Jan 2017
Total Posts : 10
   Posted 2/10/2017 6:48 PM (GMT -7)   
Bruce,

I had a chiari malformation surgery in 2000/ That is why the elavil and lyrica have become my lifeline. I have been on both, for many years. I am working with a neurosurgeon on a potential procedure, to help improve my pain. As far as my rash, it looked like chicken pox, all over my stomach, chest, back and neck. A lot of small red dots, but about 10 that had the look of a pox. I had them at age 10, so only my PC claimed this dx. The other docs, even though I had pics, said, no way. But, a rash, like that, was viral, in my opinion. All I know is I feel I am losing my life. 5 weeks on the couch or in a hot tub. My chills might be my body's way of experiencing the virus. Mqybe the lycia changes the sensations I feel. I have never had the flu, and haven't had a fever in 20 years. Didn't get one with the flu, this time, either, but labs confirmed it. I can't thank you enough for taking the time to talk to me. God, it helps. I will try to relax, and not dx mysyself with a lifelong illness, too soon. My entire world, has been taken from me, and I just want to know there will be an end to it all. Thanks again..Connie

BTW, I am interested in the low dose drug tx, as an option for my chronic occipital head and nerve pain. It might be more effective than the current meds I take, without the side effects.

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 2/10/2017 10:24 PM (GMT -7)   
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

Cperna
New Member


Date Joined Jan 2017
Total Posts : 10
   Posted 2/11/2017 7:28 AM (GMT -7)   
Bruce,

My epstein barr was negative, but I agree the rash was typical of a virus. I woke up this morning, and for the first time, my shivers/horrific symptom is down by 50%. I am hopeful now that I will recover. I got up and drove my son to a math competition, and actually went to rite aid to get some items for valentines day for my sons. I am hopeful, this may work it's way out. I am taking magnesium, vitamin D3 and B12. The hemotologist gave me B12 shot on Thursday. I am wondering if these supplements may have finally helped my symptoms. I also took a flexeril that I had in the house, last night, out of desperation. I am wondering if it helped. I woke up, not shaking, which was an amazing accomplishment. I also feel that because you gave me the idea that this might still be the flu, or aftermath, actually helped me mentally. I will not exert myself at all, but will sit on the couch, all weekend, and pray these horrific feelings stay away. I am going to discuss the med options, you mentioned, with my dr. Thank you for helping me. Having someone who can understand, and possible offer suggestion, is an amazing mental lift.

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 2/11/2017 11:20 AM (GMT -7)   
Good news! Take it easy this weekend, enjoy your family, and you'll be back to your normal self in no time!

Bruce

Kct
Regular Member


Date Joined May 2016
Total Posts : 111
   Posted 3/5/2017 7:04 PM (GMT -7)   
My LLMD is starting me on it 1.5 mg for a month, then 3.0 for a month then 4.5.
I have found Nuvigil has really helped me with the fatigue. Will see how much it helps.
had to stop Abx because I was fed up with the nausea.

Kct
Regular Member


Date Joined May 2016
Total Posts : 111
   Posted 3/5/2017 7:05 PM (GMT -7)   
Big Pharma has gotten in on LDN. They released a new diet pill with LDN in it.

Kct
Regular Member


Date Joined May 2016
Total Posts : 111
   Posted 4/5/2017 12:23 PM (GMT -7)   
Starting LDN for my CFS, FM and Lyme disease. neuro symptoms getting to be too much. 1.5, 3.0, 4.5
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