Since I havent seen my neurologist in about TWO YEARS, I had a bunch of questions for him. here they are and here are his answers:
Any value in genetic testing?
No.
Should we test my gut bacteria?
No.
Would Stem cell replacement be beneficial?
Still experimental. No.
Have you ever heard of the Marty Hinz Amino Acid Protocol?
No.
Have you ever heard of Vitamin B1 Thiamne therapy?
No.
Selegiline is giving me headaches and jacking my blood pressure, so I tapered off it and stopped taking it.
Stop taking it.
Im having increased anxiety, depression, anhedonia. Do you think I should get a psychiatric referral?
No. We'll try putting you on Requip, a dopamine agonist. That should help with your symptoms, and helping your symptoms should help with anxiety, depression. If not, we'll start you on antidepressants as the next step.
Im on 2 pills of 25/100 Carbidopa Levodopa a day. I still have symptoms and no on/off times. Even if I skip an entire day, no difference. What do you think of that?
Youre probably under dosed but its probably doing more for you than you think.
Do you think we should increase the Carbidopa/Levodopa?
No because you will run into trouble down the line. The Requip should help though.
Any thoughts on any of the following supplements? B1, NAC, Celery Seed Extract, B12, L-Carnosine, Vit D, Vit C, Fish Oil, Coconut Oil, Mannitol, Lithium, 5HTP, Mucuna, iodine solution, Co Q10 with PQQ?
No.
Your sign says you are also a neuroscience research facility. Do you have any studies that might be suitable for me?
No. See me back in a month. (He is booked out almost 2 months)
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bassofspades
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Sounds like my first neuro. Dropped him like a fly. My present MDS is totally supportive of vitamins and supplements and has recommended to me. As Wriga said, "get a new neuro!"
I don't know about other things, however regarding your problem "Im having increased anxiety, depression, anhedonia." , I would suggest you taking Bacopa Monnerie extract. Your depression will drastically reduce after a few weeks
If on thyroid medication Bacopa Monnerie extract could raise thyroid hormone. Just checked on WebMD. That would be an issue for me so I always check for drug interactions.
Thanks for reminding me about this iqbaliqbal. I have a feeling you have posted more in-depth info on HU about Bacopa Monnerie previously but can't seem to find it......could you direct me please?
Well, that was grim. Did you get the feeling that you were just irritating him taking up his time? I vote for a new DOC!
Also, I don't see what is to be lost by increasing your C/L. I'm voting for that over going on a dopamine Agonist which as we know can cause all kinds of problems. As far as running into trouble taking more C/L, we're all going to run into trouble one way or another. It would give you some information about how much you need and whether or not you're getting enough. You are on a very low dose.
I started on Lexapro a few months after I was diagnosed. Anxiety was one of my presenting symptoms. Boy that's a real bugger to deal with. The Lexapro helped immensely. I take 10 mg a day.
"Do not use Lexapro within 14 days before or 14 days after you have used a MAO inhibitor, such as isocarboxazid, linezolid, methylene blue injection, phenelzine, rasagiline, selegiline, or tranylcypromine."
Bass, if you don't stop Seleginine, you can't use Lexapro.
I've thought many times to have our MDS prescribe antidepressants, but the risks are a lot more than the benefits.
Yes, you need to find a new doc. That was all your discussion with him? First Neurologist at Mayo talked to us for about an hour and a half, our local one about 15 minutes, and the MDS at Vanderbilt close to an hour. We like a lot this MDS. He has no objection for CAM and discussed with us Mucuna Pruriens. We expressed our fear using synthetics meds, and asked us "What do you use Broad Beans or Velvet Beans?" Needless to say I was shocked!
Our HU friend iqbaliqbal recommended Bacopa. It's an excellent alternative, my husband started it about 2 weeks ago.
Im done with selegiline! Thanks my good friend. I want to avoid antidepressants as much as I can . It takes 3 weeks to ramp up to the full dose of requip, and so far , almost 1 week into it , im a little better mentally.
I take rasagiline and celexa (similar to lexapro) and my psy-doc has no problem with it. He said the concerns about combining some of these meds are overdone (practically zero real cases of "serotonin syndrome"), and if you're careful (attentive to any reactions) it's not a problem. It does appear that selegiline and lexapro are not good together -- there's a strong warning on that combo. But there are many you could try without giving up the selegiline.
Have you tried Mindfulness or meditation for the anxiety? I took an MBSR (Mindfulness Based Stress Reduction) class a few months after diagnosis and have been meditating for 7 years now. I see a therapist who has helped a lot with techniques to deal with anxiety. (I have visited ER twice in the past for what turned out to be anxiety)
Yes I tried mindfulness, meditation, journaling, therapy, cbt....i have determined that it's not about how i think! I know i have nothing to be anxious about . That is why I believe it is an imbalance of neurotransmitters. When it hits, i can't think it away
Trust me, I never had anxiety before I had PD. Definitely related to chemical/neurotransmitter imbalances. It is out of our, at least my, control. Some of the skills I have been taught have helped ride the anxiety wave when it comes crashing in.
You are on minimum dose of C/ L . I think that is where they start. After six weeks on that dose I talked to the PD nurse and got revised prescription am now taking CL sinemet 25/ 100 three times a day plus 25/100 slow release at bedtime. PD nurse said this was therapeutic dose
Oh, my heart goes out to you and anybody who has to deal with a doctor like that. I've been so fortunate to have not just a compassionate doctor but one who lets me lead the way in my treatment. He gives me feedback and recommendations and we work together. He does not poo poo things which I really appreciate!
No, I did not notice any effect on my sharpness or cognitive abilities. I had no side effects whatsoever, very fortunate.
I was diagnosed over 6 years ago, symptoms for almost nine. Besides the Lexapro and two amantadine a day I take between 5 and 7 C/L a day. I walk that line between being off and being too on, causing dyskinesia. It's my hobby, ha!
Bass, there's no way 100mg C/L twice a day can keep you ON all day. You're most likely OFf and then half Off, but never On. CYP3A4 just destroys it in 2-3 hours max. Thiamine does not protect against dyskinesia, which is the result of the levodopa serum dose spike. It does a great job for energy and stiffness.
Thiamine does not protect against dyskinesia, but in some people it has stopped it. Forum member Erniediaz mentioned that recently. He said B-1 keeps it away. Kia17 on the other hand has dyskinesia and that is the one thing B-1 did not take away.
I've seen only 2 Neurologists and the above interactions are typical of my experience. They know nothing about supplements and could care less. Their focus is on Rx drug therapy, and they seem to like agonists for some reason. One prescribed me a Rotigotine patch which I did not take after reading the list of side effects. I have not seen a Neurologist in 2 years. I am due for a follow up in November at Stanford Movement Disorder Clinic. I'll go to ask about clinical trials and FUS. As far as I'm concerned, this forum is a far superior source of information than any Neurologist.
My present MDS is not A JERK. She is a very compassionate person as well. Hip to mucuna, B1, ALA, CoQ10, D, etc., etc. she’s actually prescribed me supplements and what she feels is a good dosage to start on. However I agree with you Reedboat, this forum is an incredible resource of info and sincerely appreciated. My first neuro, after testing and DatScan gave me my diagnosis- handed me a piece of paper describing PD, said “read this!” then walked out of the office. What an a - - hole. Good doctors and bad ones....
Yes I am lucky for sure. She’s a gem. But as you stated, I’ve absolutely learned more and applied more from information gathered from this forum than the three neuros combined! All things being equal, I think my change of diet, lifestyle, supplements, etc is somewhat responsible for my slow progression. I could be wrong but tend to think it’s based on the above.
The DatScan for my husband, the radiologist sent the results. I asked the neurologist if HE reviewed the actual scan and not just the paragraph showing the diagnosis and he did not. Hmmmm. My husband and I certainly reviewed the scan (for what it was worth) as we aren't radiologists and/or doctors.
Hola soy paralelo. Algo similar me pasa. Desde 2012 tomo xadago y Stalevo 100mg a las 8.00 y a las 14.30 y a media mañana y media tarde mucuna. Hace dos meses noté que necesitaba más Stalevo. Fui al neurólogo y para mi sorpresa, ella se había ido. Estaba su esposo, también neurólogo. Se lo expliqué y le dije que no quería más medicamentos. Ella me puso en Stalevo 125 y agregó Ropinerol. No he tomado Ropinerol . Crees que estoy bien.
Hi, I'm parallel. Something similar happens to me. Since 2012 I take xadago and Stalevo 100mg at 8.00 and at 14.30 and at mid-morning and mid-afternoon mucuna. Two months ago I noticed that I needed more Stalevo. I went to the neurologist and to my surprise, she was gone. There was her husband, also a neurologist. I explained it to her and told her I didn't want any more medication. She put me in Stalevo 125 and added Ropinerol. I have not taken Ropinerol . You think I'm okay
Parallel- I know nothing about Rx drugs. I take only Mucuna and supplements. What seems to help me most is B1 injections and exercise. Best of luck with your treatment program.
Thank you! My husband lost a lot of weight since he started B1 May or June (don't remember exactly) 2018. Dr. C. had him originally on 100mg X 2/week and his weight was then 170 lbs. He now weighs 160 lbs and his first dose last Friday, after an almost 2-month break is/will be 50mg X 2/week.
Gio Cas, a member of this forum and long time patient of Dr C, takes 2x 100mg for 3 weeks followed by one week off. I’m gonna try that this month. Best to you and your husband.
Toogood- I take 1 Barlowe’s 40% (650mg) capsule 4x per 24 hours, one every 6 hours. I don’t suffer much off time, maybe a little shakier 15 -30 minutes prior to dose time. All in all working pretty well. Best of luck — John G
Yes, not completely, but enough to get decent sleep. At night I take it with grapefruit juice 25ml. In. The morning with green tea. Good luck with it — JG
Call Barlowe’s in Florida, speak with Michael. He’ll probably ship to you. To offset shipping costs, get bulk powder. Cost is about 1/2 per weight. A kilo of 40% will last you long time. Just a thought. Luck with it - JG
I had two visits with a doctor at the hospital. She was snobbish, discompassionate and judgmental. She did not even examine me both times. The doctor at UCSF is the exact opposite. I visit him every 4 months.
Ormond Beach, Florida. He's part of a big group but they won't let me see anyone else in the group. Except the nurse practitioner , who now doesn't work there anymore, as of that visit. She at least had compassion and listened to whatever I said to her. And returned my phone calls.
No, i got diagnosed in 2013 when I lived in Ohio. That neurologist said hold off on meds till i really need them. At that point my only complaint and reason for the consultation was diminishing handwriting.
The next bunch of doctors i saw were chiropractors, they all said I didn't have pd. Then I moved to Florida and my new primary didn't think I had pd either. So i got a referral to this neurologist to see if i had a pinched nerve. He confirmed to me that it's "dopaminergic in nature ". He tried me on sinemet, miniscule doses of half-pills that did nothing, for a couple of months. Then i stopped seeing him to go on the Hinz amino acid protocol with Dr Robinson. Well, poor Dr Robinson passed away and, on my own for almost two years, i started feeling worse symptoms. So I figured I'd look up the neurologist again and try c/L again since Dr Costantini said that B1 would protect me from its side effects.
No, there are other neurologists, but it takes time to find the drugs and doses that work. It's a bit of trial and error. I didn't see a neurologist for 2 years because I was doing ok on my alternative medicine program with my dear Dr Robinson but unfortunately, he passed away last year. The amino acid protocol can be expensive, and with the protection of b1, I feel ready to try traditional methods. However, if I don't turn things around , im going to re evaluate my strategy!
One of the issues - if your insurance is what doctors are in your network (covered by your insurance plan). For my husband's lyme disease we went to integrative doctors which were NOT covered under any plan. Meaning you are the one who pays the doctors fee which is anywhere from $275 per hour or $475 per hour.
And what if someone in the US has no insurance or not able to afford the costs? I read in Michael J. Fox Foundation website that those with Parkinson's disease incurred Parkinson's-related medical expenses of $22,800 annually.
My heart goes out to those folks. We spent the $$ out-of-pocket for the specialized Lyme doctor as my husband was totally fatigued. Worth the $$ and digging into our savings. Unfortunately the Lyme morphed into Parkinson's disease.
Someday - maybe not in our time - health coverage will be free for all.
Yep, mine told my hubby on his first visit to take the sinemet, no interest in any testing he had done, no interest or advice re diet, exercise, or supplements. Just “I see so many people like you as this is so common so can’t slot you in again for 18 months, but can’t tell if you’re typical or atypical yet.” If you develop atypical symptoms you are way more interesting for my research so I might be able to see you earlier (implied).
I am focussed on developing forecasting methods to diagnose people way earlier so not really interested in you once you you have it.(implied).
Who knows what he plans to do with these cases he forecasts since he doesn’t have any advice except take sinemet once he does diagnose you!
is there a way to report these people who call themselves doctors
..not that any disciplinary measures would be taken but just to know that we are fighting back against such ignorant people who took the Hippocratic oath. I am so frustrated. If tomorrow one of them were in our shoes then and only then would they feel any different...maybe.
Oh! And i asked him about the datscan i had back in JULY! So I asked if he looked at the images or just goes by the report. He just read me the report, which was 2 sentences. I let him know that i obtained the disc with the images, and I copied the key image to my phone. I showed it to him to see what he thought of it and he said it looked pretty mild.
Bass- I have to agree with prior comments that seeing a different Neurologist would be useful. That would be true if for no other reason than to confirm your diagnosis. Neurologists are generally pretty good at diagnosing things. They’re not always as good at treating them. 😁
I think you may recall that I looked into the Hinz protocol quite seriously and tested it for three months. He bases it on scientific arguments that seem to be valid in principle but don't work out in practice. One example is that 5HTP is a competitive DDC inhibitor that protects levodopa from being metabolized by the DDC enzyme in the liver. This may be partially true, but it's not at all as effective as Carbidopa, so when you use 5HTP and Mucuna as per Hinz protocol, most of the levodopa in Mucuna it converted to dopamine in the blood and you get nausea. Green tea extract is a better DDC inhibitor than 5HTP. He argues that carbidopa is the cause of dyskinesia. This is distorting the facts. Dyskinesia is caused by the dopamine spike in the brain because the carbidopa has protected levodopa from being destroyed by DDC in the liver. Dyskinesia is only due to the dopamine spike. Another point. The levodopa in Mucuna is unstable and subject to oxidation during the extraction process.
I've tested it in several combinations with Green tea, C/L and Grapefruit juice. I calculate from its effect on my symptoms that the useful unoxidised levodopa content in the 2 types of mucuna I have used Is about 50% of what's written on the label. I would not buy a second-hand car from Dr Hinz let alone be treated by him. He's only in it for the money. Stay well away.
I have done the protocol with the addition of egcg from green tea with fairly good results. Have you tried adding additional mucuna to the prescribed c/L? That was an option i had in mind.
I thought the 5htp was in the protocol to balance serotonin,as it is a serotonin precursor.im not sure it is a ddc inhibitor. I believe it was explained that the other cofactors in neuroreplete were what gets the L dopa across the bbb. It is the balancing of dopamine and serotonin that prevents nausea and allows the ingestion of sufficient L dopa to relieve symptoms.
Adding Mucuna to 1/2 a tab of C/L worked fine for me. The C in C/L effectively protects the L in Mucuna. I think the L in Mucuna is more slowly released than from C/L, but it may be that there is less useful L than what the label says. Hinz "sells" the benefits of 5HTP as a serotonin precursor that uses up DDC to be converted to serotonin and therefore competes with levodopa for DDC in this process. This is true, but the competition is not very effective. If L-Dopa is not blocked by DDC, it easily gets past the BBB. That's why you get the spike.
Bass, Wriga is right! Adding 1/2 t C to your MP is very effective. That is what our MDS prescribed, C to add to MP. Even better, adding GJ prolongs L-dopa's efficacy and bioavailability.
I had a horrible reaction to 5HTP. Terrible stomachache. Took days to recover in terms of overall function. Later read you should not take with levodopa.
So while experimenting with the HInz Protocol, the limiting factor for you was nausea? What dosages of 5-htp did you experiment with to try to remedy it? Most patients need a quite specific amount of 5-htp for alleviation of the symptom, varying from 37.5 mg to 300 mg in 37.5 mg increments, with some needing even more. Also, a limitation on being able to get stabilization is the purity of the supplements. Did you verify that the supplement of 5-htp you were taking was truly what it says it is? If it claims 50 mg per pill, then varies within a 10-20% range then you will never get stabilized. Also, to get elimination of nausea, if the patient is experiencing dopamine fluctuations as a result of melanin stealing the precursors preferentially, then you won't get stabilized.
To sit here and claim that it is all nonsense because of your own self experimentation of it over a 3 month time period is short sighted. If you did not verify that there are no dopamine fluctuations, and then go through multiple variations of 5-htp dosages staying on each for at least 5 days, then you didn't even do it correctly, thus negating your argument that it is nonsense.
Billybobby can you please tell me about melanin steal? I've heard of it but not sure what it's all about.I know you know a great deal about the hinz protocol !
Melanin steal as described by Dr. Hinz and his associates is when the dopamine precursors of L-Tyrosine and L-dopa are preferentially utilized by the body at varying times for melanin production over dopamine synthesis. The pathway goes from L-Tyrosine or L-dopa - Dopaquinone - Leucodopaquinone - Dopachrome - multiple metabolic products - Eumelanin. This is illustrated here: kegg.jp/kegg-bin/highlight_.... You can also see within that chart the other pathway that L-Tyrosine or L-dopa can take that leads to dopamine synthesis instead of melanin synthesis.
Essentially what happens is melanin needs overtake dopamine needs in terms of preference by the body as evidenced by melanin production fluctuating dopamine levels, thus causing the dopamine concentrations to vary when this occurs, thus leaving the patient with insufficient amounts of dopamine in their system. This leads to bouncing symptoms that correlate with these fluctuations, as when melanin needs increase, dopamine levels decrease, causing symptoms to get worse, then this reversing when melanin needs decrease.
The way that Dr. Hinz has discovered to resolve this is by first validating their occurrence through neurotransmitter testing in the competitive inhibition state, which is done by doing repeat tests on the same dosage. If the values of dopamine or serotonin come back and are significantly different, then this is an indication of there being either dopamine fluctuations or not being in the competitive inhibition state. If it is confirmed to be dopamine fluctuations, then you start increasing the L-tyrosine dosing. Because melanin can utilize either L-Tyrosine or L-dopa for it's needs, by saturating the system with Tyrosine, when the melanin needs increase, it will then utilize the L-Tyrosine. This works because L-Tyrosine is rate-limited in it's ability to metabolize into dopamine.
Thus, when you get enough L-tyrosine in the system, the L-dopa does not get preferentially utilized for melanin production leading to stable dopamine synthesis. The amount of L-Tyrosine needed for amelioration of melanin steal varies significantly between patients. It cannot be dosed empirically either, as L-Tyrosine will produce significant negative symptoms if the need is not actually there, meaning doing testing to verify the occurrence of dopamine fluctuations is paramount to being successful in correcting it.
Clearly you know a lot about the theory of the Hinz protocol. Obviously more than I do.
I wonder if you could tell the forum more about it and about yourself.
Do you have PD ?
Are you a health professional?
If so could you tell us more about where you practice and your eventual interests in the Hinz protocol?
Can you tell us more about the principles of this method in a few lines and in simple terms, so that those of us without medical training can understand the basics?
Has the Hinz protocol been independently trialled and published in a peer-reviewed scientific journal ? Excluding articles written by Dr Hinz. If so where ?
I have issues of dysfunction related to multiple TBI's but the etiology of symptoms is the same being brain damage or dysfunction. Thus, I have been working with health professionals over the years trained in how to apply the neurotransmitter precursors to alleviate symptoms by increasing the electrical output of the remaining viable structures.
The only reason I chimed in in such a way is that over the years, I have read numerable dismissals of Hinz's work based on what I believe to be flawed logic. This isn't to say that his work is without recourse, just that the evidence purported by many to dismiss it I believe is illogical. Most people who report having failed on the protocol did not apply it correctly. Many people attempt to self treat, which will almost never work, and those that do work with a doctor often get mismanaged because not that many doctors are competent in this, or don't follow the doctors recommendations strictly.
In terms of the independently trialed aspect, I want to see this too. But for this to happen, someone, whether it be a university or research institution, needs to become interested in it. This often only happens because of financial incentives coming from grants or donations, which isn't happening here. I would like to see Dr. HInz performed a more structured study of comparison where he takes maybe 100 patients and treats them with his methodology and compares the results to a 100 patients on C/L. It takes time to go through the process of working through his methodology, so you would probably have to go out 1 year and compare the results. The issue here again is probably the money. Doing studies like this can cost millions of dollars, and the efficacy of L-dopa is already widely known so he probably doesn't think it is worth it, especially when most people consider double blind placebo controlled to be the true benchmark, which is not a feasible study methodology with this protocol because it isn't a static dosage.
To put things simply, this is what I think most people misunderstand the most. Dr. Hinz isn't making any crazy or outlandish claims. He is still purporting the exact same treatment as everyone else: L-dopa. What he is saying, is that there is a better way to use it, that leads to better results, no or decreased disease progression, no or little side effects, and no nutritional deterioration. Instead of using carbidopa for side effect control, he recommends using 5-htp, as based on his data, it is able to control the side effect of nausea. He also implements L-Cysteine, Vitamin B6, L-Tyrosine, and other co-factors, and the logic behind doing so is sound to me.
All he did was look at why L-dopa in chronic use leads to deterioration of the patient, and then figured out how to prevent this from happening by giving the other nutrient substrates that are affected by its administration.
Thanks BB! They could probably scrape together a retrospective study of people who have been on the protocol vs people who have been on c|L going back for many years. Im a fan of the protocol and have been an advocate of it. I think its great to have options. In fact, the best thing in life is to have options, isn't it?oh, and good luck is also great!
Hi BB and thanks for taking the time to explain your position. When I first started looking into this protocol, I had an open mind and the more I studied it, the more I became convinced that it had some real value. All this in spite of the fact that most of his papers are written in a way to leave the reader confused since he uses multiple assertions that are possible but not proven. They read more like sales brochures than scientific papers. He wants the patient to believe arguments that would not convince a scientist who doesn't have PD. He uses certain metabolic pathways as arguments when there are numerous pathways possible but we don't always know which are the dominant ones. One of these known dominant ones is the decarboxylation of levodopa by the enzyme called DDC. If this is not blocked, then levodopa is metabolized to dopamine in the peripheral system and causes nausea. Carbidopa irreversibly inhibits this so effectively that levodopa can then cause peak concentrations of dopamine- in the brain that can give rise to dyskinesia. Since DDC has Vit B6 as a cofactor Hinz argues that this loss of B6 upsets a bundle of other enzymes which is bad , so carbidopa then becomes the enemy. He also argues that carbidopa can be replaced by a competitive DDC inhibitor, 5HTP that occupies DDC enough so that it can't metabolise levodopa so much, but doesn't destroy the enzyme and it's Vit B6. The problem is to find the balance between 5HTP and levodopa that works. The hic is that 5HTP is metabolized to serotonin, so that as you increase 5HTP you may reduce peripheral dopamine, but you get excess peripheral serotonin instead. He argues that you need to wait 5 days for each increase of dose to achieve stability and do urine tests to check the balance, during which time you have bad nausea. This goes on for weeks until success or abandon. There is another possible issue that some levodopa is "stolen" to make melanin, so to compete with that pathway you need to take vast amounts of tyrosine.
All these pathways are known and are credible, but even when taking high doses of 5HTP and tyrosine, the dominant one still remains the Metabolism of levodopa by DDC. Even low doses of carbidopa deals with that, without nausea, and you can successfully mix C/L with Mucuna to find the minimum dose of carbidopa that does the job, so I don't see why people should pay a fortune for all these tests, consultation fees and suffer weeks of nausea when a simple and cheap solution exists. Inhibiting CYP3A4 with Grapefruit juice also gets rid of nausea and there are no Consultant's fees, but that's another story.
I hope I've explained this correctly, that's how I see it without re-reading all the piles of papers and notes on this subject.
ps. Wouldn't it be nice if real practising Consultants with hands on knowledge had the generosity to offer their advice to the forum and join in discussions for free.
You make good points, but the peripheral synthesis of serotonin is not a bad thing. Just because you are administering 5-htp does not mean you will then get excessive serotonin production, in fact, because of the competitive intertwined relationship between dopamine and serotonin, administering 5-htp helps prevent many issues that can arise from chronic l-dopa intake, such as side effects like nausea, GI issues, depression, psychosis, among others that are associated with both peripheral and central depletion of serotonin concentrations.
Also, based on Hinz's assertion, it seems to me that what he is suggesting is that you don't need to decrease peripheral dopamine synthesis to a substantive but generalized degree through inhibition of the AADC enzyme rather, you inhibit it to a specific degree. His data suggests that most patients, i.e. over 90%, get relief of nausea while intaking substantive amounts of L-dopa, within a range of 5-htp in the 37.5 mg to 300 mg range. This is a quite small amount, meaning the inhibition of AADC peripheral production of dopamine would not be decreased that much. From a theoretical standpoint, it would then make sense that it would likely not lead to elimination of nausea, but his in practice results say otherwise, suggesting that nausea isn't caused by too high of circulating peripheral dopamine but insufficient comparable serotonin perhaps, or another phenomenon caused by the administration of the 5-htp.
The reason to use 5-htp to me is that it is how the system is designed to compensate for the issue. If you use Carbidopa or something else to eliminate the symptom of improper peripheral levels of monoamines, then you aren't really solving the root issue. Preventing serotonin depletion through 5-htp intake is crucial for not just nausea, but also for preventing tachyphylaxis, which is very common after long periods of l-dopa intake. It also prevents other central nutritional depletion related issues, such as severe apathy/depression, psychosis, cognitive issues, anxiety, etc.
You do have to intake larger amounts of l-dopa because it is not being completely inhibited peripherally, but it seems worth it to me as complete inhibition of peripheral synthesis of serotonin and dopamine is not a good thing. There is a reason it is synthesized for numerable peripheral functions in the first place.
And yes, I agree that it would be helpful if Dr. Hinz himself could just answer some of the communities questions to help clear things up. I've seen him post on a few forums before, but I think a true q and a like format where people can ask questions that would clarify things in a direct manner to him would be really helpful. He has access to data that I don't, so he would have the ability to answer specific questions about many things that are kind of up in the air right now.
I'm not going to disagree with you on this last point. I also agree that serotonin depletion could be an issue. I prefer to limit carbidopa to the minimum to get enough levodopa into the brain, rather than stick to the constant ratios of C/L and complete the Levodopa using Mucuna. If you add a dose of 5HTP to boost serotonin, this then also gets to the brain. The result is not far from that of Hinz, you preserve some DDC (AADC) and B6, but you get there in one step and no nausea. Btw, adding B6 in moderation does not affect the efficacy of carbidopa.
Finally, peripheral metabolism of levodopa by CYP3A4 produces dopaquinone ... and nausea. If you haven't done so already, I invite you to read my stuff on inhibiting CYP3A4 using Grapefruit juice. Look up my posts in my profile to find them. This reduces peripheral oxidation and significantly extends the half-life of levodopa. It's not for everyone because of drug-drug interactions.
Also it hasn't been trialled because there's no money in it as a drug, but I wouldn't be surprised to see Dr Hinz pick it up one day for nice consultancy fees.
Ah, at least your doctor looked at your scan. My hubby's didn't.
It sounds like this doctor has a weak bedside manner.
In terms of his knowledge of the more experimental approaches (HDT, basically any other protocol or regimen that involves more than agonists or levodopa) it's probably worth noting he's a neurologist and not a specific Parkinson's doctor, and therefore likely spends his time seeing PD patients, Alzheimer's patients, MS patients, ALS patients, brain tumour and concussion patients, neuropathy patients and probably no shortage of patients with some benign issue that is somewhat neurological in nature (BFS comes to mind). Consequently, there likely isn't enough time in the day to learn about all the new treatments or ideas for all of these things.
Otherwise, there wasn't an awful lot wrong with his responses, aside from what seems to be an abrupt brevity which I agree Is unpleasant. The truth is there's presently no value in genetic or gut testing. Hes right about stem cells.
What I would disagree with (and to be super clear, I am not a doctor) is the reluctance to bring up the CL to see if that is effective. It sounds like you've never received any relief from CL and that is unusual, right? Shouldnt some additional CL be noticeable very quickly, given how short acting it is? If it isn't, doesn't that bring your diagnosis into question?
Does increasing CL for a short period (to test it's efficacy) really doom you to increased side effects down the line?
I'm also not sold on the preservation angle versus maximizing your QOL today . All sorts of things could happen in thw next decade. There might be a cure. You might get hit by a bus or develop pancreatic cancer. You may not develop material side effects at all. Sacrificing good QOL now (If you can get it) might be foolish.
If you leave this neuro feeling unhappy, then yeah, you should look into another one. Those interactions are very personal for patients with disease and you should get some comfort from the meeting even if there's no good news.
So sorry to read this friend, my experience is very similar, for what it's worth, it was requip in its xl form that gave me my first ride in an ambulance after OCD suddenly appeared along with serious panic attacks. The point I wish to convey is that within 5 min of seeing neurology they said: "we need to reduce the requip from 16mg to 12mg". It is obviously well known here in the UK for causing not helping anxiety. I'm sure you are fully aware of the reputation of this drug, I just wanted to be sure you knew of its mental health side effects as I would hate for anyone to experience the same as I did.
If the anxiety is a PD symptom, then theoretically whatever increases the level of dopamine should help. DA's are not definitely going to give someone anxiety or make anxiety worse, though as I said above, the dr immediately knew what the cause of my anxiety attacks was, its's just in my case they did, 'above 12mg'. I've been on 12 mg for 1y now. I've also swapped from stalevo to sinemet cr. I've had moments of anxiety attacks over the last 12m but they slowly disappeared. But a general, unacceptable level of anxiety remained. That went almost immediately when I'd been on 1500mg of B1 for about 3 weeks. So effective is B1 on my mental health that my family can tell when I've not been taking it for whatever reason. It did not do much for my motor symptoms at the level I was taking it at.
However, I stopped B1 because I'm 1/12 into trialling the new comt inhibitor Opicapone (brand Oxygenus). This in combination with the requip and sinemet cr has got me from housebound to walking approx 1/2 mile and from able to get maybe 1h per day 'on' to from 8.00 am to 10 pm less probably in total 1-2 hr 'off' at various times of the day.
Hahaha! Yes indeed, kicked in around 6mg for me, once messed up and took more than I should, fortunately, I was able to sleep it off..........in a tent of my own making for 2hrs!
You know, Niggs, I just checked the bottle and my full dose of requip is 0.75 mg, which will take a total of 3 weeks to ramp up to! Do you think it will do anything at all ?
I doubt it for PD Bass, at that level, it's used for RLS, and not unsurprisingly Erectile dysfunction (in particular when caused by SSRI's).
In clinical practice here in England they regard the minimum effective dose for PD to be 8 mg daily, or at least my PD consultant does, however, I got improvement at 6 mg daily which is in line with the manufacturer's claims.
I also started getting side effects at 6 mg.
My personal experience is that in the early years Requip xl is beneficial for symptom control but that the minimum effective dose is between 6 - 8 mg daily on the slow release formulation.
But it is not at the higher levels when taken to control worsening symptoms. And of course the side effects can be, as you know, dreadful and can appear up to 12 months after treatment has begun.
For this reason slow titration is needed initially, and your 3 weeks is quicker than mine. I believe I was prescribed, 10 y ago as my initial treatment, 6mg, which was started at 0.25mg- 2 weeks, 0.50mg - 2 weeks, 0.75- 2 weeks up to 2 mg slow-release. The titration then accelerates and the increases done in 2 mg steps.
Bass -- two takeaways from Laurie Mischley's PD Summer School about optimizing meds:
1. Take C/L with something acidic -- lemon juice, Vitamin C, Betain HCL, etc. This can boost the effect 25-30%, based on her experience with her patients. PD folks are often low on stomach acid.
2. Take CDP-Choline. 2 500mg caps per day make C/L 30% more effective. 4 500mg caps make it 50% more effective. This takes a month to begin to work. This has been so effective in some cases that folks have had to decrease C/L because they are then overmedicated and start to get dyskinesia.
As with anything these ideas don't work for everyone. But Dr. Mischley had worked with literally thousands of PD patients and has had good results with these strategies.
Here are my two cents of wisdom: 1. I had bad experience with ld agonists (mirapex. 25mg). Even this small dose caused bad narcolepsy and legs edema. It's also affecting the sharpness of the brain. 2. I found that cd/ld at least for me has some sort of the dead band. It doesn't help at all until the dose exceeds some threshold. Once this happens the response becomes proportional to the amount of ldopa.
VERY INTERESTING . It's exactly the answers I would receive with my neurologiste supposed to be professor but extremely consevative . I suppose there are neurologists open to try other treatments such as B1... ETC ; Where are they, ?
It goes to show depend on yourself I live in Cheshire we lost our of nurse two years ago still no replacement or sign of one not seen a neuro in 7 years since I was diagnosed7 years ago we battle this condition day after day doctors haven't got a clue I'm lucky get bad dyskinesia and struggle first thing doing well apart from that all the best keep fighting
I consider myself lucky. At my last neuro visit, the first thing he said was, "Any new remedies?" He is always interested in what I am doing, homeopathy, B1, mannitol. He can see that at 13 yrs since diagnosed (17 yrs since first symptoms), I am doing well, on a minimal amount of meds (only c/l and amantadine). He scheduled my next visit in 10 months.
Time to take your doc down a peg. Let's see how up-to-date he is on the clinical trials of "re-purposed" drugs that have been considered (by MJFF) as top contenders to slow or halt the progression of Parkinsons: Exenatide, Isradipine, Nilotinib and Inosine. Two have failed in clinical trials and two are still in the running. Which have failed and which continue to show promise? Ask him at what point would he consider off-label prescribing a "trial proven" drug for his patients who are dying of Parkinson's?
If he's not "up" on research, tell him to "get current" and ask him to reschedule your appointment when he's prepared to give you answers. Your time is valuable.
Normally, dosages of C/L are prescribed 3 times a day, in order to cover “off” times etc. You need something that will help you, and get results, and, it sort of looks like you need a compassionate Doctor, who cares about your over-all well being, basso!
Lots of great information here. Thanks rebtar for sharing info from PD summer school. Am going to try acidic w/ Rytary doses.
Bassofspades why are you limited to the one neuro and cannot see others in the group? I do agree your C/L dosage is low 3-4 times a day, every 4 hours, is more typical early dose
Much mention here of dopamine agonists. Seems to be the new craze coming out of MDS training, to start with agonist and combine with C/L when the latter is needed to smooth and even out dopamine levels. I’ve been on 4 mg Neupro patch for years with no discernible side effects. I might be a little more fastidious house cleaner, but that’s not too bad! I’ve been at higher doses, but didn’t feel any better.
I have been told that anxiety can be a symptom of off time
Standard answers from my past experiences. 😖 I am happy to have folks on my “team” that encourage me to take good care of myself and to live my best life. I rarely hear “no”, I usually hear “why don’t you give it a try and let me know if it is helpful to you.” I am sad for your experience. 😔
Just an idea...have you checked with Dr. Robinson's office to see if they can refer you to someone trained in amino therapy? I talked with Dr, Robinson, on the phone, and he was very compassionate and knowledgeable. Sadly, due to his death, I never got to FL to get his wisdom. Sending hope your way!
Hi Bass, just want to chime in here and say that if you do decide to pursue the Hinz protocol again, I highly suggest against self treating. The likelihood that you will be successful in doing so is quite small, as you need to at least get 1 Neurotransmitter test to verify that dopamine fluctuations are not occurring which you need a Doctor for, as well as just needing the general guidance through dosage adjustments based on your symptomatic response. You could call Dr. Hinz's office again if you decide to do so to get a referral or I have a Doctor who I have personally worked with for multiple years who is very proficient in its application that I could recommend.
Initially I worked with Dr. Stein, one of the co-author's of the papers, but he passed away. I now work with Dr. Chad Oler, who you can find here: amino-acid-therapy.com/cont.... He has been the best Doctor I have worked with. Very personable and receptive to what the patient has to say.
His fees as far as I know go as follows: $60 initial consultation fee where you talk for 30 minutes or so and decide if you want to move forward. Then every consult after that is at a rate of $240 an hour, but you usually will only need 15 minutes or so every 2 weeks, so about $60 every 2 weeks in consultation fees, depending on how long it lasts to get you stabilized. The only other cost besides this would be the pills, which you should know the costs of. Given you are still relatively early staged, i'm guessing the monthly cost of the pills will be around 200 to 400 dollars.
I think this kind of neurologistis widespreadm and my neurologiste would answer in the same way. What to do,? I suspect a kind of loby blocking all alternative to the useless présent therapy ;ingestion af dopamine and nothing else . . Is there a list of open mindeld neurologists,?
Hi Bass….I highly recommend reading Claire Weeks books for the anxiety, depression and anhedonia. Her books cover a condition called nervous exhaustion – where the adrenals become depleted from our nervous system working in overdrive. This leads to the symptoms you described and more. This can happen due to trauma (physical or psychological) or working for long periods in a high stress situation. Living with PD can be a stressor all by itself. I recommend “Hope and Help for Your Nerves” to start…it’s a quick read. She also has two more books with more information: “Essential Help for Your Nerves” and “Self Help for Your Nerves”. They are all available on Amazon. I also listen to her audios on youtube and there is a DVD. Is a process but when I follow her program I start to feel better. Best of luck to you…
You are taking a very low amount of Sinemet. I’m not surprised it doesn’t work. Are you tremor dominant or rigidity? Maybe take half a pill at a time and shorten the time between doses and top up with mucuna.
I have tremor, mostly with movement, as well as right arm rigidity. Bad bradykinesia. Once I get up to .75 mg requip doses for a week, if im still not better, i will start adding mucuna. Thank you !
Had a follow-up last week. So far all we have accomplished is incremental increases in the requip (ropinirol) from .25mg 3x day to now 3 mg, 3x a day. I gotta admit im feeling better since 4 months ago . Anxiety and depression much better. Bradykinesia is my worst symptom now.
My neurologist got a new PA to help out . His name is Thor and he came from a big movement disorder clinic, so looking forward to meeting him.
Also back on my low dose Lithium which is helping the anxiety and depression, and horny goat weed which contains Icarian, a dopamine neuron rescuer. I wont give you tmi, so don't worry!!!
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