Low dose naltrexone

[FMundo]

Is there anyone else who has Parkinsons who is taking this medication? I have been taking it for six months and my symptoms have not progressed and one symptom, involuntary tears have gone away. I do know that it has been utilized successfully for other autoimmune diseases and that it boosts endorphin production 200-300%. I would be interested on feedback from long term users

[Dinolulu]

My husband is taking ldn for parkinsons. He was diagnosed about a year ago, but had stiffness and muscle pain symptoms a couple years before that. He has been on ldn for about 8 months now. We started him out at 0.5 mgs. Increasing about every 2 weeks by another 0.5 until he reached 4.5 mgs. He has never had any side effects at all from ldn. He started on parkinsons meds a year ago and had had a number of side effects from those. About 6 weeks ago he stopped taking his parkinsons meds because he was sick of the side effects. He continued with the ldn - which, by the way, we talked his Neuro into prescribing.

His stiffness has gotten worse without the parkinsons drugs, but has not returned to the severity he had before medication. I realize that the ldn is not going to reverse the parkinsons damage done so far,but our thought is to try to prevent progression. We both think this helping him in a number of subtle ways.

So does his neurologist, while still being cautious to say too much. I figure we have nothing to lose with ldn.

Hope this is helpful to you.

[frankaspergilus]

Hi FMundo.

Although I've not yet been officially diagnosed with Parkinson's, I'm pretty much 100% convinced I've been developing the symptoms over the past few years even though my neurologist says he's not sure, despite the fact that my twin brother has Parkinson's (diagnosed 2009) and my father had many of the symptoms too, although milder than my brother. So, I'm not on any medication but have seen a lot of info on LDN over the years and wondered about whether I should try it but, always been unsure about where to source it.

As you seem to be happy with LDN, I'd imagine you would be confident enough to reveal where you buy it from and how you take it.

Sorry I can't answer your question about feedback but I'd be really grateful if you could help me to get useful info on your LDN.

Thanks.

Frank

[Dinolulu in reply to frankaspergilus]

You need to get a prescription for it. I have mine and my husband's compounded by a compounding pharmacy. Some people get a prescription for naltrexone and dilute it in water and measure out the needed dose.. Check out the ldn site; there is a lot to be learned from this group. The hardest thing is to convince your doctor to prescribe it, according to many others. I had my doc suggest it. Lucky I guess.

[FMundo in reply to frankaspergilus]

Probably the best source of Low Dose Naltrexone LDN (where I get it) is Skip's Pharmacy in Boca Raton, FLA. Dr. Skip Lenz is a long term, well known advocate of the drug, they are very reliable (usually 5 days to deliver anywhere in U.S. via mail). They were recommended by several sources. They will compound LDN into capsules in various strengths. I would suggest you try 3 mg.

The important thing is to get LDN from people who are meticulous in its preparation. Full strength 300-800 HDN really suppresses operation of immune system, leaving one vulnerable to cancer. In mild doses it momentarily suppresses your immune system which recovers and then really cranks out endorphins, upwards of 200-300 %. Physical exercise is also a way to increase endorphin production (one of the things that physicians recommend you do when you have Parkinsons. Perhaps there is a connection here?)

I have not had any adverse effects other than vivid dreams (which is entertaining more than anything else). I wake up for five minutes every night at 2 a.m. (after taking drug at 10 pm). I think its related to my system turning on endorphin production.

Skips number is 800-553-7429.

Frank

[FMundo in reply to frankaspergilus]

I'm very sorry to take FIVE months to reply... didn't see your query. Skip's Pharmacy is the best place to compound LDN that I know of. They have clients all over the U.S. They provide various strengths ( I would suggest starting at 3 mg). I believe a three month supply (one capsule per day) costs me $65 and that includes shipping. (My insurance doesn't cover LDN. Their number is 800-553-7429

[Hikoi]

Could try the LDN research trust Facebook group.

[knotez1]

I have use LDN for the last four years, in conjunction with my PD drugs. I take 4.5mg at bedtime to assist my initial movement in the AM.

My biggest advancements in MEDs has been the addition of Orphenadrine,100mg morning and midday. I was provided this for back pain due to home remodeling activities (sometimes I refuse to slow down and yes often I pay for it later). To my surprise one of this drug's side effect was to vastly improved my movement issues and basically eliminated my muscle stiffness and pain .... when I ran out of my back medicine my pain and movement issues both increased again (I have always had almost crippiling left side shoulder, neck and lower left rear headaches). Previously I also had frozen shoulder surgery on this same left shoulder, a very severe case that required the removal of massive scar tissue.

I am lucky to have a neuro that gave an ongoing script for the Orphenadrine. I do get benefits from LDN but the Orphenadrine has been my savior.

[enjoysalud]

Hi, I am a caretaker for my 54 year old son who was DX with PD by Datscan, Aug 2015. He is solely on 25/100 C/L-dopa 2.5 three times daily. A few days ago I started him on Solaray Dopa-Bean ALONG WITH his C/L-dopa. I have cut back his C/L-dopa by 50mg (1/2 of a tablet). His Neuro is aware of what we are doing. I came across you discussion on LDN (Others who are taking LDN?) and this posting. This posting is a year old (today is Aug 15, 2016). Are you still only on the LDN along with your supplements? How is it going? I'd appreciate any sharing on your part.

[FMundo in reply to enjoysalud]

I have been taking LDN 3.0 mg daily for two years. I have the Posture Instability Gait Disorder - late onset (I am 70) version of the disease (fast progression) versus the early onset (which your son evidently has). I am taking the 25/100 C/L-dopa three times a day, just like your son.

I can say that there has been virtually no progression of the disease in either motor or cognitive symptoms over the past two years. The ONLY side effect of the drug has been "vivid" dreams at night. Sometimes I wake up for a few minutes at 2 a.m. which I think may somehow be related to the time that the immune system bounces back to "full sparkle" (in point of fact endorphin production doubles or triples). But I go right back to sleep.

The fact that Dr. Bihari took the drug for 17 years (on the belief that it reduced the possibility of cancer which was in his family) offers some reassurance that long term use is safe. Both my parents died of cancer. The cost of LDN is $65 for a three month supply.

My opinion of LDN? I think it should have gone through Clinical Testing for people with Parkinsons at some point in the last 20 years. I think it unlikely that it will (there's no money to be made with the drug, thus no interest from Pharmaceutical companies). My hope is the drug will slow down progression of PD. Thus far it seems to have.

I figure LDN can do one of three things: nothing, slow PD or speed it up. (Brilliant analysis, eh?) I'm betting that it doesn't speed things up... and rest somewhat comfortably with the thought that I'm doing something (boosting my immune system) rather than taking supplements, twiddling my thumbs or listening to the advice of doctors and scientists who recommend we sit around and wait patiently. (eg: Nilotinib as well as LDN). Evidently they fail to respect the fact that those of PD are on a conveyor belt of neurological deterioration... and don't have time to waste. That PwP's have a right, and they (doctors) have a responsibility to allow people to take their own risks and make decisions about their own bodies.

I scratch my head over the apparent passivity of PwP's. We need a new, aggressive paradigm for testing that is better than waiting for Clinical Trials. An example: 200 people are now taking Nilotinib on their own...- brave, proactive and vital souls who may make a real difference. Nilotinib - with enormous possibility to stop PD is, after initial safety tests, sitting on the sidetracks... A YEAR ... without a definitive plan for testing!

Sometimes I wonder if PwP's passivity isn't possibly symptomatic of the disease.

Frank

[enjoysalud in reply to FMundo]

Thank you for responding to my query. The content was encouraging. It gives me hope. I am the caretaker and often struggle with fear over implementing alternative supplements (your observation of passivity could be fear). My son is usually always willing. I do not mind experimenting on my own body, but tremble at experimenting on my son. Today I felt sad most of the day. My son and I both had physicals. I am 75 soon to be 76 and in EXCELLENT health. I wish it were me with PD and not my son. His physical went well, but he has many many visible symptoms of PD. He has blepharitis in both eyes and his GP gave him an anti-biotic prescription. His GP (who is also mine) said he does NOT think that my son has PD but some undiagnosed disorder, worst than PD...he said PD is a HORRIBLE disease. We are both VERY fond of our GP. He has been my son's GP for more than 20years. My son has very atypical PD symptoms, but I am sure he has PD and not some other strange disorder. Most of the world thinks of PD has a tremor disorder, and I think so do many doctors. Six days ago I started him on 2 capsules of Macuna Pruriers (each contains 50mg of L-dopa), along with 2 tabs of C/L-dopa(each 100mg) . I see a little bit of improvement. I would like to get my son to take equal measures of MP and C/L-dopa. Our GP, in support of your observation, said that if PD could be transmitted by sex we would have had a cure awhile back, but the larger community is very passive. You have answered my question. Thank you! One last question then I am sure I can end our dialogue and move on. What is your precise dosage of C/L-dopa, and are you taking anything else besides the LDN?

[silvestrov in reply to enjoysalud]

I looked into LDN and it is a safe drug. At such low doses the only side effect, like FMundo stated above, is vivid dreams. If you have ever taken melatonin you know what that is all about. I once had a full size cruise liner navigating around my bed - weird as hell dream.

LDN is usually started at 1mg and is built up to the maximum dose say over a 3 month period. 1mg to 3mg to 4.5 mg. Of course, if the best response is 1 ro 3 mg and not 4.5, then go back to a smaller dose.

It was one of the only therapies, besides exercise, which helped my father. I started him at the low dose and he responded best at 1 -3mg versus 4.5.

Sorry to hear about the dry eye syndrome. Here is a suggestion:

Omega-3 essential fatty acids therapy for dry eye syndrome: a meta-analysis of randomized controlled studies.

"Consequently, our findings suggest that omega-3 fatty acid offers is an effective therapy for dry eye syndrome."

ncbi.nlm.nih.gov/pubmed/251...

I remember your son has depression too:

Role of omega-3 fatty acids in the treatment of depressive disorders: a comprehensive meta-analysis of randomized clinical trials.

CONCLUSIONS:

"The use of omega-3 PUFA is effective in patients with diagnosis of MDD and on depressive patients without diagnosis of MDD."

ncbi.nlm.nih.gov/pubmed/248...

And, of course, PD:

Impact of omega-3 fatty acids in Parkinson's disease

" We recently demonstrated the efficacy of omega-3 fatty acids to protect against neuronal cell death in an animal model of Parkinson's disease. ► Our analyses further revealed the implication of the neurotrophic factor BDNF as a mechanism of action underlying the beneficial effects of long-term omega-3 dietary supplementation. ► Studies from various research groups have underscored the effects of omega-3 on various traits of Parkinson's disease, all pointing towards a beneficial role of omega-3 fatty acids."

sciencedirect.com/science/a...

Brain derived neurotropic factor and PD:

Intrastriatal implantation of fibroblasts genetically engineered to produce brain-derived neurotrophic factor prevents degeneration of dopaminergic neurons in a rat model of Parkinson's disease

jneurosci.org/content/15/12...

I use between 2-3 grams, 2,000 - 3,000 mg/day of a combination of salmon or cod liver oil. Both are distilled at a molecular level to remove toxins.

Have a good day.

Rich

[enjoysalud in reply to silvestrov]

Silvestrov, I was sooooo happy to get your response. My spirits are always lifted when you give me input, and this was unsolicited. Thank you!!! I remember you sharing about your dad and the LDN. I believe I have the website where you bought the LDN. Mundo has also supplied an address in Florida. I was sorry to read of your dad's passing, but grateful that he is no longer suffering. I will fight for my son, but if we reach a place where the suffering is too great for my son. I am willing to let him go. Decades ahead, I hope. For myself too. I am a supporter of COMPASSIONATE CHOICES, and grateful that our Gov signed it into LAW. I hope your car is back to tip top shape. I read where you are one year older than my son. For now, my son is HEALTHY! O.k., moving on..............my son does NOT suffer from depression. He does suffer from ANXIETY and is opposed to pharma meds. He takes L-theanine (400mg morn and afternoon and 200 at dinner). He started on Solaray, and currently is on Sports Research (it got lots of good client reviews). When that finishes I will have him try NOW brand. My son is NOT very sensitive about changes in his body. That said, he told me that the Solaray and the Sports R seem to give equal relief, no difference. Not complete relief, but help him to relax. Last Tuesday he had his first Botox shots and it was helpful, but the next day he had a HORRIBLE debilitating pain in his lower mid back. It brought him to his knees. I think it was the dystonia moving down. Having read of Bailey's and DarkFlower's pain, I felt bad for my son, but not fearful. My son lives with constant pain (sometimes dull, sometimes acute) but he has good spirits, and a ready warm smile. Re Omega 3, my son takes OMEGA 3 in the morn and evening. The total EPA is 530-600mg, the DHA is 340-400mg, and total amount of fish oil is 2000mg. I have him up to 1,200 mg of CQ10 daily (divided into 3 doses), and it has helped him considerably. HE also is taking daily 10mg NADH (started about a week ago). A few days ago I started him on long vida curcumin. He has been taking turmeric for a long time but not the long vida. I did purchase the magnesium L-threonate, but will hold off on giving it to him. He does take Magnesium (with calcium), just not the L-threonate. His Vit B and B-6 (blood test measured on 8/8) are very high, his B-12 above 1000 and his B-6 at 47.4. I am removing the B complex from his liquid concoction (daily dose of 1000 mg of niacinamide, 250 mg of Green Tea Extract, 3000mg of Vit C) and only having him get B from food and his multi-vit. His liver and kidneys are functioning well. He's lost a great deal of weight, 5'10" at 145pounds, but his BMI is 20.56, still great. HELP, QUESTION FOR YOU: My son was prescribed by his Neuro 2.5 mg of C/L-dopa 3X daily. I want to put him on half Mucuna Pruriens and half C/L-dopa. My son told the Neuro that he wanted to include MP, and the Neuro (I like him) said he had no problem with that. We did not ask for guidance and none was offered. I read that the FDA only allows MP prescription in APPROVED clinical trials, so I am more understanding of Neuros who back away from MP. I have shared that I suffer from "fear". Most fear is unwarranted and irrational. I know this, but I still suffer FEAR. I can push up against it but pay the price with sleepless nights and knots in my stomach. Most of my fear comes from trying "stuff" on my son, not from anything else (economic, terrorists, or otherwise). Ok. I have read everything you have shared with others on using MP. I still can't do it, but I am willing to spend $$$$ on pre-measured capsules, at least until my confidence builds up(hopefully soon) and I am willing to purchase ingredients. In the meantime I started six days ago (Aug 11th) my son on 2 C/L-dopa 25/100 tabs (200mg) and 2 Solaray Dopa-Bean (333mg extract of MP in 15% concentration) equal to 50mg of natural levodopa (100mg). He has been taking this dosage 3X daily (6AM, 10:30AM, 3PM). I am beginning to see improvement in him. He is more calm, not so anxious, more cognitive present, his gait has improved at least 30%. He can hold his neck up a couple of minutes, before he would lean it on his fist. All I have read states that the natural MP is two to three times more potent than the synthetic. I'm not sure if this means that 50mg of MP is equal to 100mg or more of synthetic or that its potency is reflected in greater benefit to those who take it. If it means it is ACTUALLY equal to more mg, It makes me think that I am having my son take too much. Currently his present combined dose of C/l-dopa and MP is 300mg. As of today he has suffered no headaches, nausea, diarrhea, etc. I would like to decrease the 2 tabs of C/L-dopa to 1 and a half (1.5) three times daily, and keep the SOLARAY or NOW Dopa bean to 100mg. I need your feedback on what I am doing and what I want to do. When will I know to do this? Any comments would be appreciated.....even that you will NOT comment on capsule MP. Way past my bedtime, sorry this is so long, ...........whatever your response, thank you for your initial reaching out!!

[silvestrov in reply to enjoysalud]

Finding the 'sweet spot' dose of a Sinemet or a combo of mucuna pruriens with sinemet is a matter of experimentation. Neurologists constantly are tinkering with what constitutes the right amount so you are going to have to do the same. I did the same and continue to tinker with it. It is a matter of watching your son's reactions to the them. If he is currently responding well I would not change the dose and look for a long term response....or change of response. Vague I know but levodopa dosage is like juggling fish. In Oliver Sach's 'Awakenings' Encephalitis Lethargica patients were awakened by pure levodopa and the doses ranged from 1,000 - 4,000 mg per day. In the movie they alluded that the magic number was 1,000 mg but this is not true. So a wide variation of dose response occurred to EL patients and PD patients can have large variations too. I am glad your son has responded to levodopa therapy and this is very positive. Usually atypical parkinsonism, the category of disease your doctor thinks your son is in, does not respond to levodopa.

My major concern is to minimize/eliminate the side effects of Sinemet and if this can be done, it should be a safe supplement to take. Recently it was discovered why Sinemet stopped working: DNA methylation.

Researchers Discover Why L-DOPA Stops Working in Parkinson’s, Seek Prolonged Treatment

"In a discovery that might turn out to be a game changer in Parkinson’s research, University of Alabama at Birmingham researchers discovered that DNA methylation causes L-DOPA to stop being effective after a few years, instead giving rise to dyskinesia — involuntary jerky movements making life even harder for patients."

"The team also treated animals with a compound called RG-108, or with methionine supplementation, and saw that they could change the dyskinetic behavior of the animals. While these treatments are not suitable for humans, the experiments provide a proof-of-concept that by changing the methylation it is possible to harness the development of dyskinesia, and so, prolong the effectivity of L-DOPA."

parkinsonsnewstoday.com/201...

______________________________________________________

The best methyl donor available is called betaine hydrochloride and it is currently being tested in Iran against levodopa side effects and in the 1980's methionine was also used with L-dopa. I am running out of steam here.

The remainder of the answer is in this thread. it addresses the issues of methionine, betaine hydrochloride and Omega 3 (which oxidizes into betaine).

healthunlocked.com/parkinso...

I need to get ready for work and am crashing.

Rich

[enjoysalud in reply to silvestrov]

Silvestrov, thank you for your response. The message that I am hearing is that I need to do what everyone else does......tinker with the Mucuna (MP). Help, I need a bit more clarification/guidance on the nature of Mucuna. When it is stated (as Dr Maldonado states, as do others) that MP Is "two or three times more potent than the synthetic", does this mean that its potency is reflected in greater benefit to those who take it OR do I interpret it literally.........that 50 mg of MP is equal to 100-150 mg of Sinemet plus? Please advise.

[silvestrov in reply to enjoysalud]

You are asking a very difficult question because the proper dose of MP or C/L is not an exact science. This is a question which doctors have been struggling with for decades.

It, an effective dose of MP or CL, depends on the other nutrients a person is taking or is deficient of and what their initial response is to any dose of C/L or MP. Also the effective dose of MP or CL depends on changes in a person's health which may change with time.

Let's see what we can discover.

_______________________________________________

Carbidopa is used with levodopa to lower the effective dose of levodopa. Carbidopa chaperones levodopa to the blood brain barrier so it can be delivered to the brain and central nervous system. In addition to lowering the dose of levodopa it decreases nausea associated with large doses of levodopa. Without carbidopa (carbidopa is a decarboxylase inhibitor) the decarboxyase enzyme converts most of levodopa peripherally (in the body) so about 5% of the ingested mucuna pruriens levodopa reaches the BBB.

It is more complicated than the above because MP has additional components which help with absorption and MP's therapeutic use like beta carboline - harmine, an MAO inhibitor, and 5HTP, a serotinin precursor, etc ..

Let's look at the following study:

Mucuna pruriens in Parkinson’s disease: a double blind clinical and pharmacological study

jnnp.bmj.com/content/75/12/...

"Eight Parkinson’s disease patients with a short duration L-dopa response and on period dyskinesias completed a randomised, controlled, double blind crossover trial. Patients were challenged with single doses of 200/50 mg LD/CD, and 15 and 30 g of mucuna preparation in randomised order at weekly intervals."

"The two doses of the mucuna preparation were chosen to correspond to either 100 mg (one sachet containing 7.5 g, that is 500 mg of neat L-dopa) or 200 mg (two sachets together containing 1000 mg of neat L-dopa) of L-dopa in the presence of a decarboxylase inhibitor. This conversion factor was based on published studies comparing clinical and pharmacokinetic L-dopa effects with and without a decarboxylase inhibitor."

Results: "Compared with standard LD/CD, the 30 g mucuna preparation led to a considerably faster onset of effect (34.6 v 68.5 min; p = 0.021), reflected in shorter latencies to peak L-dopa plasma concentrations."

Comment: So the 30 gr MP dose has considerably faster onset of effect than the 200/50 dose of sinemet. i think this is where Dr. M gets his statistics from in stating it is '2-3' times more potent. Also, is the larger dose of MP required to have the strong therapeutic response? At 15 grams of MP they did not have the strong therapeutic response that occurred at 30 grams.

Your question: "...50 mg of MP is equal to 100-150 mg of Sinemet plus?"

Answer. Yes and no. the 30 gr dose may have a faster onset of action but you have to take into account the actual amount of levodopa in the MP preparation. I have seen various amounts of levodopa in MP preparations including, 15%, 20%, 40%, 50% or 99% (pure levodopa). In this study it was 40% levodopa of MP.

What percentage of levodopa is in your MP preparation?

Basically I would not be paranoid or anxious about using doses equal to or larger to sinemet. _________________________________________

The above study was referenced by Dr. Hinz in the following article:

Amino acid management of Parkinson’s disease: a case study

ncbi.nlm.nih.gov/pmc/articl...

And I have been contacted by several people on the 'Hinz' protocol and their daily dose of MP is between 28-30 grams - just like the effective dose in the spotlighted study. (40% levodopa).

This is why when I take 99% pure levodopa, (minus the other components of MP), I take it with a combination of EGCG, a decarboxylase inhibitor, and quercetin, a COMT inhibitor like Entacapone to lower the dose of levodopa.

___________________________________________

Bottom Line: In the study 1 person had do drop out because of nausea - too much levodopa converted by the body (without carbidopa).

The dose of effective MP depends on the percentage of levodopa and the total amount of levodopa in the capsules/tablets.

My sense is you need to take a larger dose of MP/levodopa than sinemet to get a faster onset of action. The question is how much to take?

This is a very gray area without an easy answer. Again, it comes down to experimentation. I kept a record of my response to tryosine or MP over time to see how I responded to therapy.

First it was 1,000 mg tyrosine a day. The 2,000 mg tyrosine a day. Tyrosine made me too tense so I had to cut it out. I tried various MP preparations, 15% levodopa, 50 percent levodopa, then 500 mg pure levodopa (alone) several times a day and then thought to combine it with EGCG/quercetin, fish oil, vitamin C to maximize its effectiveness.

Not an easy question to answer and depends on the responsiveness of the patient to any form of dopamine replacement therapy.

If I took sinemet I would use 2,000 fish oil to prevent dyskinesias, which you are, and betaine hydrochloride to act as a methyl donor.

Dopamine replacement therapy is a juggling act.

[enjoysalud in reply to silvestrov]

Thank you! I do NOT have a physical science background (social science yes) and you presented this very clearly for my non-science knowledge/logic/understanding. As always, clear answers lead to more questions. I will save my questions for when you return from giving yourself MUCH NEEDED TIME and CARE. It is a good example for the rest of us. I use to tell my students, EACH OF US ONLY HAS 24 HOURS IN A DAY. NO more. One needs to gift our soul and mind with it's "food". I cannot express my gratitude for the gift of information you have given me, the peace of mind, it has brought. You lean towards supplements because of Dr. Lam, I lean toward supplements because as a young girl (1940s) I would go with my grandmother as she gathered clippings from plants on the side of the road and would go home and make them into teas or ointments to rub on parts of my body (and others in the family)...often on the bottom of the feet, loosely wrapped. I, and I'm sure others on this site, are a strong bunch. I will miss your input, but will feel pleased because I will think of you giving the finite 24 hours you have to your projects, hence YOUR health. I keep you in my good thoughts and prayers.

[FMundo in reply to enjoysalud]

If your son has PD based on his age I would suspect he has "early onset" PD... and will live many years ... and I don't mean five, more like 20. Alas.. a diagnosis of PD does not some with a "pass" for other illnesses. Indeed, people with Parkinsons (PwP's) have a greater risk for some cancers.

I take 3.0 mg which is a moderate amount of LDN. The FDA has approved 600 mg of Naltrexone (High Dose) for treatment of alcoholism and drug addiction... so 3mg is pretty LOW. People taking LDN generally take between 1.5 mg and 5.0 mg. It is prescribed by physicians often for MS, also Chrones Disease. People take it for a lot of ailments.

Tuning up the immune system (it gets lazy as we age) is a good idea. I haven't had a cold, the sniffles or a virus since I was diagnosed 2 years ago. Cuts and bruises heal noticeably faster.

Because there seem to be no side effects (other than waking up at night) .... and I haven't seen any studies or heard any reports of long term ill effects. There is only one neurologist that opines (based on no evidence) that conceivably it could aggravate PD - but then again he's president of some organization like "American Skeptics Association", he makes a hobby of being a skeptic... weighing in on "Dousing for water" (for example), so I have discounted his comments. His name is Novella, went to Yale.... frankly I think he should know better than to offer unsubstantiated opinions to the public. Good scientists and MD's don't do that.

I just read a study of effect of LDN on Parkinsons patients that showed it was proved effective in reducing the tendency towards "sleepiness / drowsiness during the day" which is apparently the 3rd most troublesome symptom for PwP's. I never realized that this symptom was associated with PD... as I often stay up to 11 pm and get up before 6 am every morning and virtually never am "sleepy" during the day. (OK maybe I doze for 15 minutes after I've had a martini and dinner) But, then again, I've been taking LDN since my PD was diagnosed.

You sound like a wonderful parent. Fortunately mine departed to the great beyond before I was diagnosed. They were spared your anguish.

I hold the belief that for many situations, the caregiver struggles more with the disease than the person with Parkinsons . . . So be sure to take care of and take time "off" for YOURSELF. My greatest worry is being a burden to my dear wife and that may well be true for your son. One can ease that burden by planning and executing "away" activities, and make arrangements for respite care.

May peace be with you. Hope my comments provide some comfort.

Frank

[enjoysalud in reply to FMundo]

Gosh, people are so kind on this site. Thank you for all the kind things you wrote. My son and I do not get flu shots and never have had the flu or colds,..at least not since entering adulthood. My son was born at Grace New Haven hospital. His father was in the graduate Medical Sociology program at Yale....didn't finish there. Being practically the only Mex-Amer in all of Yale, he got intimidated. It was early early 1960s. Civil rights protests were just starting to kick in. I think that if one is compassionate, you always think the other side has it worst. The PD worries about the caretaker, and we want to take away the pain that the PD suffers. Mundo, I think I may have confused you. I wanted to know the dosage of your C/L-dopa that you take 3X daily, not the LDN. Thanks!

[FMundo in reply to enjoysalud]

It says 25-100 Mg on the prescription label for the Carb/Levo. Same as the day I started two years ago. Last visit with neurologist she asked me if I wanted to increase to 4 x day and I said "I can't imagine why... it's working fine with dosage I have." Fact is I've been experimenting with REDUCING the dose but have found my voice gets tight and my heel drags more and then I get "depressed" at the symptoms. My inclination, throughout my life, has been to "go easy" on medications... reluctant to even take aspirin unless I really need it. So I am cautious, to say the least, about experimenting.

Does the LDN keep me from having to do the inevitable increase in Carb/Levo... or is it my own genetic makeup. I haven't a clue. Maybe next month or next year things will change.

Its funny how one conjures up an "image" of the person you're writing to when you've never met. I figured you must be a "mother" not a father (too nurturing to be a man), and that you were "terribly English, you know." My family name (Mundo) is Spanish and my ancestors were Jews who found it rather unpleasant to be in Spain during the Inquisition in 1492. Fortunately they had a shipping company, moved hastily to Scotland lock, stock and barrel. After that they moved to St. Augustine, FL.

Both my uncle and grandfather on my mothers side died of Parkinsons so its a family thing.

Frank

[enjoysalud in reply to FMundo]

Wow, you only have to take 1 tab three times a day. That's terrific. My son is on 2.5 three times a day , but I cut him back to 2 + 100mg of Mucuna P three times a day. That's close to 300mg of Dopa. Maybe I should try cutting him back to 1.5 of the C/L tab and see what happens. He seems to be doing better with the 2+ 100mg of MP. He was DX Jan, 2015, and confirmed in Aug 2015 with DatScan. So, you are Sephardic Jew. My dad always felt that was in his ancestry, probably. I am of Mexican descent on both sides of my family. My grandfather was a Methodist minister, but I was raised Presbyterian. I suspect my dad had PD, but he never shared. I was his caretaker and his doctor never mentioned anything to me. My dad quit working at about 55. He had Double Vision, very stiff neck that he could not move, his back was always going out (chiropractor), and he said the chemicals at work were getting to him (Photo lab). His doctor had him on many of the supplements that I read are good for PD. My dad drank tons of coffee, and loved to ride his bike about 4+ hours a day. Both I read good for PD. My dad passed on at 91. I suspect no one else in my family of having had PD. My close family also has kept away from meds. I can't remember the last time I took an aspirin. My son is also adverse and that's why I think I was having so much trouble getting him to take supplements. He is now cooperative. Well, Frank, let's leave it here. I may check in sometime in the distant future. I will keep you in my good thoughts and prayers. Thank you for all the info you shared.

[silvestrov in reply to FMundo]

Here is one PD/LDN study:

Abstract #13: Low-Dose Naltrexone's Tolerability and Effects in Fatigued Patients with Parkinson's Disease: An Open-Label Study

sciencedirect.com/science/a...

[enjoysalud in reply to silvestrov]

Thank you! Printed it out to send to college friend whose 70 year old husband newly DX with PD.

[FMundo in reply to silvestrov]

Thanks for sending the study. Truth be told, I can barely wait to go to bed at night because my dreams (with LDN) are quite a show. I mean its like moving from black and white movies to IMAX. (There's part of me that wonders if the good and entertaining dreams at night might reduce fatigue during the day because one has been so fully engaged in expressing/experiencing unconscious material the night before.

Perhaps I'm getting too Freudian . . .

[enjoysalud in reply to FMundo]

You gave me such a chuckle. Thank you!

[Mamabear07]

Yes. I have been taking it for 2 months. So far I haven't seen much difference. I have been re-diagnosed with Vascular Parkinson's. It has progressed very rapidly and in year have become totally dependant on others.