Others who are taking LDN?

[FMundo]

I am interested in hearing from others with Parkinsons Disease who are taking LDN (Low Dose Naltrexone). It is a drug that is used extensively for another autoimmune disease (MS) with very positive effect. The few cases I've been able to uncover have spoken favorably about its ability to halt progression of PD symptoms. No serious side effects, boosts the immune system.

[movinngroovin]

MEEEE!!!!!!!!!!

[FMundo in reply to movinngroovin]

I'd really appreciate knowing what process you went through in deciding to take LDN, and the effect it has had. Would you care to share that information?

[JeanieBeanie]

My husband has been taking it for 5 weeks and could immediately feel benefit. He started taking half of a 4.5 mg capsule and has now built up to the full dose. The benefits include better sleep, a feeling of well being and optimism and a slight improvement in walking. A useful website is ldnresearchtrust.org/ and lowdosenaltrexone.org/.

[FMundo in reply to JeanieBeanie]

I am taking LDN at a very early stage where my only symptom is left heel slightly dragging, slight self perceived only tremor on left side appendages. I've started with 3.0 MG and am over sleep effects after 3 nights. I've only been on it a week. No noticeable positive effect at the moment. Actually I'm only hoping to slow progression. Would be interested in knowing more your husband's decision making process to take LDN. Care to share that?

Thanks for your reply

[Rejuvem]

Anyone considering LDN should keep the following things in mind. LDN can't be used with steroids, beta interferon, methotrexate, azathioprine or mitoxantrone, or any other immunosuppressant drug. Because LDN stimulates the immune system and that drugs suppress the immune system.

LDN will also block the analgesic effects of any opiate drugs; any opiate – like drugs be discontinued at least two weeks before this treatment is initiated.

Any of the following medications is not recommended take with LDN:

Alfentanil, alphaprodine, codeine, dihydrocodeine, ethylmorphine, fentanyl, hydrocodone, hydromorphone, levorphanol, meperidine, methadone, morphine, morphine sulfate liposome, oxycodone, oxymorphone, propoxyphene, sufentanil.

To avoid side effects is important to start with 1.5 mg and increase gradually the dose.

About half the people that take it sleep better, but around half have issues getting to sleep with all the extra energy. For those people, taking chamomile or valerian tea along with melatonin and calcium/magnesium capsules an hour before bedtime seems to work well for most people.

Also, taking LDN with Low Dose Lithium Orotate (about 20 to 40mg or 4 to 8 capsules per day) seems to boost effectiveness, and help protect from side effects.

[FMundo in reply to Rejuvem]

Thanks very much for the heads up on things NOT to take when taking LDN. I am planning to wear a "Medic Alert" bracelet which is tied into a national database. In the event you're in an accident EMTs and other medical personnel have been trained to access this information before administering drugs. In the case of opiates (often used in pain situations) this would be quite important. I think EVERYONE taking LDN should consider wearing a medic alert bracelet (or anklet). I am taking 3.0 MG and it took me only three nights to get over the sleep problems. Arguments for use with physician were: Family history of Prostate and other cancers in addition to possible halt of PD symptom progression, if feel I'm doing something and finally, "its my body, I get to do what I want with it."

[Rejuvem in reply to FMundo]

Personally, I'm for just about anything that keeps people away from or lower the dosage of Levodopa and it's derivatives. People just don't understand how truly toxic this drug can be. Literally since the introduction of these classes of drugs, the death rate of PD patients had been climbing, and I'm not the only one that believes this is directly tied to Levodopa's effect on blocking B6 and it's associated enzymes. Literally over 300 chemical processes in the body just come to a grinding halt.

[FMundo in reply to Rejuvem]

You know, in order to "prepare" for the DaTscan at Mayo Clinic I had to cease and desist from taking my Carb/Levo 25-100 MG. Because the test had to be postponed, I was off it for a month. None of my symptoms increased. I went back on it after the test. Why? I thought I might be protecting myself from other symptoms that might otherwise emerge. Doesn't have any effect on my heel dragging. Slightly nuts.

My neurologist has dismissed the idea that the drug use causes symptoms downstream. That those symptoms are the "natural progression" of the disease and would happen anyway. I am not so sure. So I have, over the last few days, decided to stop taking the drug. Continue with hiking and exercises and rely on LDN plus taking "good stuff" - vitamin D for example. What other "Good Stuff" would you recommend? I'm 69 and have had PD symptoms for one year. Gradual increase of internally felt tremors primarily on left side, occasional leg and foot (instep) cramps.

[Rejuvem in reply to FMundo]

You can't blame your Neurologist. The schools are all geared towards teaching commercially available, FDA Certified products and literally nothing else.

As for the "Good Stuff" as you say, one of the key missing minerals in todays diet is Ltihium Orotate, Dr. Gray from Mars Venus recommends the Vitamin Research Brand. Dr. Gray recommends you start with 2 a day (10mg) and gradually increase to 6 to 8, depending on your situation. You can find it on Amazon.

Universitiy Studies have found that Lithium Orotate literally GROWS BACK Grey Matter in your Brain, previously thought of as impossible. Fresh brain cells have a greater propensity for releasing dopamine than older ones, so obviously excellent for PD. They've also found that it protects nerve endings from the Oxidative Damage that is thought to cause most of the symptoms of PD.

Another key to the puzzle is Vitamin D3. In the middle of the summer, on a sunny day our bodies can create 15,000 IU in 15 Min. Yet we're told that anything over 1000 IU is "Dangerous"? Most supplements conain less than 1000 IU, but the truth is we need closer to 5,000 when we're healthy. 20,000 when we're sick and somewhere in between if we're fighting chronic conditions.

Vitamin D3 is converted to calcidiol in the liver, which in turn is what controls about 10% of our DNA, specifically the parts that control the Immune System.

When taking such high amounts though it's important to also take K2, to keep the Calcium that D3 Transports from getting into our Soft Tissue, such as Blood Vessels (hence why doctors are always warming us not to take too much D3, for fear of Calcification and hardeing of the Arteries.... That's a K2 deficiency, not too much D3). Check with your doctor if you're on Blood thinners though, since K2 can interfere with this.

In June of 2013, the University of Alabama at Birmingham (UAB) found that shutting down production of a key group of immune proteins, major histocompatibility complex II (MHCII), completely protected mice that displayed a “human version” of PD from related nerve cell death. Their breakthrough proved that it's a misdirected immune system that was causing the majority of the damage. Is it no wonder then that another study by Life Extension Magazine found that 70% of all PD Patients had a clinical deficiency of Vitamin D? If D3 & Calcitrol controls your Immune system and you're not getting enough, doesn't it stand to reason that a misdirected immune system can unleash the damage seen in the UAB Study?

Another key I believe is Curcumin. Places like India, who consume the spice with Breakfast, Lunch and Dinner have very low levels of PD and Cancer compared to their U.S. Counterparts, why? All sorts of new studies have shown that it's an incredible anti-inflammatory product. Products like Longvida Curcumin are about 50X more absorbable than regular curcumin so we can get the benefits, without having to put it in everything we eat.

Finally another big peice is Iodine. Okinawa Japan has both some of the longest living people on the Planet and most have very few chronic conditions. You just don't see the levels of PD, Prostate Cancer, Breast Cancer and a host of other diseases. I blelieve that Iodine is the key to this. They're getting anywhere from 3mg to 300mg a day, or a median of 13.5mg a day, while we're told that the RDA is 250mcg a day (1 quarter of a mg!) We're told if we take too much we could end up with Thyroid Cancer, yet a new study just released shows that in the area directly surrounding the fukushima Nuclear Plant (damaged by the Tsunami) has a rate of only 0.5% Thyroid cancer (YES... AFTER the Nuclear Accident!)... and believe me when I say they've been testing EVERYONE!. Here in the U.S. where hardly anyone is tested, the rate is 1.5% of the population. It's believed that if we actually tested everyone like what they've done in Japan the rate would be 50% higher. Even so, we have a rate of Thyroid Cancer that is 3X higher than that of Japan, so CLEARLY the doctors and scientists here are WRONG High levels of Iodine WON'T give you cancer or Hyperthyroidism!

Iodine is essential for the manufacture of Dopamine, and ALL other hormones in our bodies. Without it, hormone production comes to a slow crawl and our muscles tend to absorb large amounts of Bromein and Floride (which are molecularly similar, yet toxic) in an effort to compensate.

I've been taking 50mg Capsules of Potassium Iodate a day for the past several years and I have more energy now, then when I was 30, nearly 2 decades ago.

[JeanieBeanie]

He has had PD for 21 years and he has deteriorated over the past three years. His walking is bad since he had DBS. I found an article about Lexie and NDL so he went to his doctor. He will try anything to see if it improves his symptoms.

[Ramuu]

I have been diagnosed with PD during 2010. I managed very well with Exercise, Walking, Yoga & Breathing exercise till Dec 2012 ( without any medication ). With pronounced PD symptoms in Mar 2013 ; I under went Ayurvedic treatment at Kerala (INDIA) , which brought symptoms under control ; since then I am on Ayurvedic Medicine ( Kapi Kachu - Indian Mucana & Ashwagandharista ) plus Exercise, Walking, Yoga & Breathing exercise.

I heard a bout LDN from an US Army Retd. Doctor ( fellow sufferer ) ; since 4 months I am on Liquid LDN home prepared ( None of the Pharma company in INDIAN is willing to compound LDN ; so I prepared Liquid LDN by dissolving 50 mg NORDICT tab in 50 ml water , so 1 ml = 1 mg ) . I have gradually increased from 0.5 ml per week ; touched 4.5 ml , stayed for about one month and brought it down to 3 ml as I was only loosing sleep with out any noticeable improvements. I will continue for 2 months & watch and take decision.

If you have / anybody else have any good feed back on LDN , please let me know.

Regards

Ramu

[FMundo in reply to Ramuu]

Ramu,

Thanks for your reply. It is interesting that you heard about LDN from an MD who was taking it. He/She is not alone. There are people (some MD's) taking it as a prophilactic as they have family histories of cancer. It boosts immune system. Increasingly Parkinsons is believed to be an autoimmune disease. As people age many have weakened immune systems. Many cancers are the result of autoimmune system deficiencies. There seem to be no serious side effects to taking the drug, it doesn't interfere with any PD medications and its long term use (people having taken it for 17 years). In the U.S. the medical establishment and pharmaceutical companies ("Big Pharma") are driven primarily by the the idea of making big money, and LDN can't be patented at this point.

Thus there are no Clinical Trials ... so establishing the efficacy of LDN in treating Parkinsons is and probably never will be established. Thus there are pathetic attempts (like mine) to acquire first hand information.

[Rejuvem in reply to Ramuu]

Since you're already trying an Ayurvedic treatment, have you considered Mucuna Pruriens? Like Levodopa, it increases Dopamine levels, but without the toxic side effects and without blocking B6.

[Ramuu in reply to Rejuvem]

Yes ; I am taking Kappi Kachu ,in empty stomach , it is Indian name for Mucuna Pruriens ( it is french ). I am also taking Ashwagandharista after food ; both are good combination for PD without any side effects.

[Rejuvem in reply to Ramuu]

Unfortunately, in Western Medicine, most doctors are ONLY trained in Pharmacological Alternatives, so they have no clue when it comes to Homeopathic and Ayurvedic treatments. Levadopa, and it's derivatives have been literally shortening the lifespan of the PD community, due to it's toxic side effects and how it blocks B6. People just have no clue how much damage this actually does to the body.

[Ramuu in reply to Rejuvem]

Yes you are right. My friend US Army Retd Doctor is also of the same opinion. He has also taken Ayurvedic treatment in Kerala ( INDIA) , was also on Kappi Kachuu. I also have Neurologist and a Neuro Surgeon in India , who strongly recommends Ayurvedic treatment for PD.

[michaela13]

I went about 3 months. I really saw no difference. I stopped because i wondered if it was interfering with the sinemet I am taking as my walking during off periods was getting worse. I'm not sure. I would like to know if anyone else had that result. None of the doctors are familiar with it so it's hard. You're on your own. I took a cream form as i have trouble swallowing. It can take up to 6 months or a year to truly work so you've got to be patient.

[FMundo in reply to michaela13]

I certainly feel "on my own." That's part of the reason I'm reaching out to other people with PD. Personally I don't feel there is much risk and potential benefits are: Maybe I won't acquire prostate cancer which is extremely common as men age (my father had it), it MAY slow down progression of PD and finally I feel a whole lot better about taking this drug that has proven capability of boosting my immune system rather than simply relying on "band aids" ... dopamine replacements/enhancements.

With the natural path of "things getting worse" (at varying rates for different stages of the disease.... all varying between individuals ... for Parkinsons, it is totally understandable that you hesitate to continue with LDN. It is impossible to tell whether what you're "taking" (LDN) is causing problems, or just the progression of the disease. As LDN has nothing to do with enhancing the delivery of dopamine , I'm inclined to believe that LDN is innocent. However, I respect your right, responsibility and NEED to make your own decisions about your body. I would simply say, the medical establishment has made virtually no effort to investigate LDN and has, pretty much, taken a "hands off, you're on your own" attitude toward the drug. Big Pharma probably deserves the assignment of the term "Benign Neglect" to their involvement with the drug.

[Rejuvem in reply to FMundo]

One of the issues with LDN, Lithium Orotate treatments and other hemeopathic treatments (such as using Mucuna Pruriens instead of sinemet/Levodopa as a Dopamine enhancer) is that either the patent has expired or it's not a patentable product, because it's all natural. Considering that it would cost up to a Billion dollars to go through the FDA's approval process, who is going to bother when all their work will benefit everyone else? Big Pharma charges Hundreds if not thousands for many of their prescriptions, not only to recover the cash they spent on approval processes, but also because they have exclusive patents that won't allow others to manufacture the same competing products.

If only there was an "Open Source" project for Medicine, maybe this could change but I don't see it happening any time in the future. This forum we have here is about the closest thing there is to it.

[FMundo in reply to Rejuvem]

It is unreasonable to expect pharmaceutical companies to have any interest in promoting products that are not profitable. Indeed, I would not be surprised to find that Big Pharma doesn't actively seek to discourage medicinal alternatives that threaten the success of their products. I imagine that LDN is on their hit list. A product that boosts the production of endorphins 200-300% (strengthening the body's immune system) and is available for a paultry $24 a month? When treatments for MS cost thousands? Scary stuff for them.

[laglag in reply to FMundo]

FMundo,

Will you list all the meds and/or supplements you are currently taking? Thanks!

[FMundo in reply to laglag]

I am taking (for non-Parkinson's stuff) Lipitor to control Cholesterol, low dose aspirin (prevent strokes as I'm 70).

For Parkinson's I'm taking:

Carb/Levo TAB 25-100 3X per day (Sinemet) to replace Dopamine

(symptom suppression)

Vitamin D3 1000 IU 2X per day, with (K3 to prevent calcium in soft

tissues) - neuroprotective

LDN (low dose naltrexone) 3.0 mg - boosts immune system,

endomorphin 200-300% 1X per day at 10pm [PD is increasingly

thought to be an problem with autoimmune system, this is to restore

homeostasis. Also prophylactic against development of cancer

(family history) and increases energy level. Older people's immune

systems tend to weaken)

Korean Red Ginseng Root (Herbal supplement) 400 mg 1X per day

neuroprotection and a stress reducer.

Other: Good exercise daily on exercycle 20 minutes per day. Impossibly boring, so I watch TED Talks on my Smartphone while I do it.

I think this combination for me offers the best chance for me to slow down the inevitable decline of PD. I am a "late onset" PwP, and my subtype (MDs won't commit yet) is that I have PIGD version, what I call

"galloping PD" (as opposed to "ambling PD" which is more characterised by earlier onset, Tremor Dominant symptoms and much slower mental decline).

[laglag in reply to FMundo]

Thanks. Have you ever tried a gluten free diet and/or Paleo diet? I'm hearing good things about it, but mostly from people with MS. It's difficult to go totally gluten free & eat only grass fed meat & organic fruits & veggies.

[FMundo in reply to laglag]

I'm afraid I have no experience with either the gluten free or Paleo diet. There is no relationship between MS and Parkinson's other than the fact that they are both treated by neurologists.

[michaela13]

How do you go about getting alternative treatments? I believe in it but i find it so hard to find a mentor with this.

[FMundo in reply to michaela13]

Michaela13,

You're not kidding ! Problem with Physicians is that most of them go the FDA approved route. Remember with Parkinsons, what you're dealing with is a neurodegenerative and progressive disease. You need to do everything possible to extend the life of neurons that are dying and will not be replaced. If you have PD symptoms, 80% of dopamine producing neurons have died, so you're operating on fumes.

So looking at that aspect .... that what you're after is creating cellular environment (your body) that is as neuron friendly as possible. The medical profession is, in general, focused on remediation and repairing things once they're broken, not in preventative measures. As such they're concerned with getting replacement dopamine into your brain, one way or another and in suppressing symptoms.

My advice is to join together with others who have PD (local to you) in exercise classes or discusssion/support groups. Ask them about their sources. Look for naturopathic MD's on the internet.

Frank