My story chap. 3: I sent this email to the... - Cure Parkinson's

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My story chap. 3

zaq11qaz profile image

I sent this email to the good doctor yesterday morning

"Dr. Constantini, as per your instructions in your first email, I am stopping b1 today do to a general feeling of weakness and periods of dizziness which started 2 days ago. If these conditions are relieved, I will restart b1 on September 23rd with a daily dose of 1 gram according to your protocol.

If you have any other instruction please let me know.

Thank you, Danny

He replied with a simple "ok"

I've now missed 4 grams of b1 and already the back pain(see chap. 2) is returning, but the weakness and dizzy spells are subsiding also.

Send me some patience in a bottle.

57 Replies

Hi there, The dr response was really just “ok”? Well that’s not very professional and I’ve never received a response like that from any of my doctors what ever specialty. Hmm , just makes wonder. 🤔. Well I hope you hear back with more detail soon on what protocol you should follow. Take care. Karen

zaq11qaz profile image
zaq11qaz in reply to Kwinholt

I kinda thought the same but I told him what I was going to do, which is exactly what he would have told me to do, so what else was there to say? I'm thinking He may be getting dozens or even hundreds of emails a day and simply doesn't have the time for niceties.

I feel at least I can give him the benefit of the doubt.

Kwinholt profile image
Kwinholt in reply to zaq11qaz

I like your positive additude because it really does take to much energy to be negative . I hope you get the relief that some others receive from his B 1 regimen. K

JerMan22 profile image
JerMan22 in reply to zaq11qaz

I think you're right. If you hadn't spelled out exactly what he would have told you, then he would have told you. :)

i'm in almost the same boat. Started at 2g, he cut me to 1g, and now he's just increased it to 1.5g.

JerMan22 profile image
JerMan22 in reply to Kwinholt

Do any of your doctors work for free?

Kwinholt profile image
Kwinholt in reply to JerMan22

Of course they don’t . And I think it’s wonderful that he has given some relief to some of us with our PD. 😊

nellie58 profile image
nellie58 in reply to Kwinholt

English is his 2nd language and he needs an interpreter to write his emails. I think OK conveys that the email was read, understood and agreed with.

Kwinholt profile image
Kwinholt in reply to nellie58

I’m sure that is exactly right and encouraged for all of you.

ruff1 profile image
ruff1 in reply to nellie58

I had the same response to an email then a more detailed one from his assistant so I assume he read the email then passed it to his assistant to respond later , I couldn’t respond to a email in Italian ! I couldn’t even read it !

GioCas profile image
GioCas in reply to Kwinholt

hi Karen,

How do you extrapolate that "ok" from an entire conversation of multiple emails, or read it in full or nothing.

As I know him, dr C likes to have a personalised communication with patients one by one because it helps to improve the treatment, he likes to help the sick as a doctor and his communication is directed to this; others they're more professional and good at explaining and maybe they're stars on television, and they are not here to respond to patients one by one, but what matters is the result.

Dr. C is my doctor, but it could also be yours if you wrote to him also you are not Italian and without charge.

With respect and friendship Gio

Kwinholt profile image
Kwinholt in reply to GioCas

Gio, I meant no disrespect , was just being supportive to a fellow PD friend and what they posted. K

GioCas profile image
GioCas in reply to Kwinholt

😀🌺🍀🌷 to K

Making reports is very good. But publishing private conversations word for word in public is a bad idea for my opinion.If one did it to me without ask before, I would close the communication.Gio

zaq11qaz profile image
zaq11qaz in reply to GioCas

You have a point there. From now on I will report in my own words the jist of Dr C's

communications. But only if there's a change in dosage or something I feel would benefit the entire community.

Kwinholt profile image
Kwinholt in reply to GioCas

Happiness and relief to you all. Take care. Karen

'ok' would be an acceptable response to me, as you stated, what else is there to say. His professional skills are what's important, I've no need for 'cold tea n sympathy'.

But there's an important point here. The good Dr works for free (who pays the assistant? perhaps some thanks needed there also?), and more & more pwp's are contacting him. It's obvious that in the near future he could be overwhelmed by demand, not to mention the stress of an excessive workload on his own health.

Just a thought.

glenandgerry profile image
glenandgerry in reply to Niggs

This is exactly why we haven't yet contacted the good Dr C but just followed our own Thiamine protocol. Experimenting with dosage since April. Presently on 1.5g in the morning and 1.5g in the afternoon.

GioCas profile image
GioCas in reply to glenandgerry

Hi glenandgerry,

My opinion is to write to him will give you more certainty, even if maybe he will not change the doses. This certainty is sometimes important and I would not hesitate to do so if I had difficulty .

I think Dr C. taking care of the sick is his passion and purpose and he'll do it for as long as he can. also for you.

Gio

glenandgerry profile image
glenandgerry in reply to GioCas

Ah, thanks Gio. I really didn't want to bother Dr C as he must be so busy. However, I think I will contact him after Glen has the steroid injection in his spine (for the back pain) on 2nd October because right now he's on so many nasty drugs i.e. morphine & tramadol, that I think any effect of using the Thiamine is not a true picture.

Giovi1960 profile image
Giovi1960 in reply to GioCas

Hello, may I ask for your opinion? I wrote dr. Constantini at the end of August and I haven't got a response so far. I was telling him I was going to start taking 2 gr b1 daily and gave him my symptoms. Asked him if I could have his opinion/guidance. I know he's extremely busy and don't want to burden him even more. Do you think I should write him again? Or should I wait for a bit longer? Thanks in advance for your opinion.

Gio S.

GioCas profile image
GioCas in reply to Giovi1960

hi Giovi1960

rewrite always, in English and Italian too, with short and simple sentences that the translator does not alter a lot, the only case of non-answer that I know was a wrong email address or he dont see the email, but I do not know, I'm not in direct contact with him I see him once a year for my visits for the rest I never hear because I do not have the need, already having a good therapy.You could ask Cincinnato or Easilly or Roy or many other that write to him.

Dr C. email carapetata@libero.it

Giovi1960 profile image
Giovi1960 in reply to GioCas

Thanks so much for your quick response! All the best. Gio S.

Toogood profile image
Toogood in reply to glenandgerry

How’s that going...I’m on 1g a day..thinking oh adding another one...

glenandgerry profile image
glenandgerry in reply to Toogood

It's hard to say how it's going as Glen is in so much pain for which he's taking nasty pain-killing drugs so any benefits from taking Thiamine seem to be somewhat 'hidden'. Glen isn't good at being in-tune with his body & giving feedback, but from what I've observed, his voice is definitely stronger, he's sleeping a little better & seems to be better able to turn over in bed. All of these are god but we were hoping for more. I guess we can't expect miracles as he's been diagnosed with this awful disease for 13 years & has the added back pain problem, consequently he is no longer able to exercise, in fact he finds it difficult to walk even a few steps. 🙁

GioCas profile image
GioCas in reply to glenandgerry

Dr. C. has always been involved in the most difficult cases in his life even before the discovery of b1 in a clinic dedicated to the rehabilitation of patients, knows their problems. If you think it is appropriate, you can write to him whenever you want; he will answer you even if he is very busy, I am sure.

ConnieD profile image
ConnieD in reply to GioCas

We should all be extremely grateful to Dr. C. , and thank God he is the rare Dr.

ConnieD profile image
ConnieD in reply to ConnieD

Who expects nothing in return!! I have never met or heard of a doctor like him and am grateful and humbled that he would help me. My case is one of the more difficult cases with on off periods and dyskinesia from the beginning . Yesterday I emailed him a question and update to which he gave a longer response, then when I needed clarification and asked “does that mean I should do xx?” He replied “Yes”, what more could I ask for? I can only imagine how overworked he is, a doctor who really wants you to feel better, most neurologists I’ve been to just want to increase my medications nothing else!

RoyProp profile image
RoyProp in reply to glenandgerry

The back pain? Consider epidural steroid injection. I have been pain free now for almost two years. You may consider consulting with an orthopedic pain manager.

glenandgerry profile image
glenandgerry in reply to RoyProp

Thanks Roy, Glen's had 5 or 6 of these injections over the past 6 years with varying degrees of success. He's booked in to have another in a couple of weeks & we're hoping it will be successful!

I'm still puzzled as to why when he takes a Masopar tab that his pain almost disappears. This would seem to suggest it's Parkinson's related but if that's the case how is an epidural steroid injection going to help? 😕

tacato profile image
tacato in reply to glenandgerry

Glenandgerry, have you noted any improvement yet?

glenandgerry profile image
glenandgerry in reply to tacato

Not much, as I mentioned in my replies to Toogood & GeoCas above. It's difficult to say due to Glen taking morphine & tramadol opiate pain killers for excrutiating back pain.

in reply to glenandgerry

Gerry,

What is wrong with Glen's back? Morphine can be counter productive in several ways! Constipation is common in PD and morphine can add to the problem which in turn anything you put in your mouth will likely be poorly digested and this includes the thiamine! A work around may be the B-1 injections. Is the back pain localized to the spine?

Art

glenandgerry profile image
glenandgerry in reply to

Aw, thanks for asking Art. No need to tell us about the constipation! Our usual tried and trusted remedy of coconut oil & prunes didn't touch it, neither did Movicol, so now on another laxative prescribed by the GP.

Good point about oral supplements being poorly digested; but not sure how to go about getting the thiamine injections.

The back pain is not localised to the spine, it keeps moving around from the back, to the buttocks, to the legs, calves & feet.

Glen's going into hospital to have a double spinal injection on 2nd October. We're hoping that will alleviate his pain so that he will no longer need the morphine & tramadol. If the injections don't work, we're in trouble as there isn't a Plan B! He's had injections on 4 previous occasions but they only worked once.

in reply to glenandgerry

Hi Gerry,

You told me where the pain is, but you didn't say what is causing the pain? Back issues can cause pain going down the legs all the way to the feet because that is where the nerves go. Icing is highly anti-inflammatory for temporary control and as adjunctive treatment, but here is something you can consider and discuss with your doctor at the next visit. Morphine can be made into a topical lotion that can be applied directly to the back, especially right over the spine. You can make it yourself or ask your doctor if he can write a script to have a compounding pharmacy make it up to his specs. The advantage of this is that you will get way less morphine in the gut to mess that up and you will get less systemically also. You will also get relatively high tissue concentrations exactly where you need it. I make my topical ibuprofen lotion this way as I described in another post.

When I first started making ibuprofen lotion, to see if it would work, I took one of those softgel ibuprofens and punctured it and squeezed the oily contents of two softgels into a shot glass. I then added a common body lotion like Vaseline Intensive Care until the shot glass was about half full. I stirred it with my finger because it was just a test that I was going to do right then and I wasn't going to be saving any if there was leftover. After it was well mixed, I applied right to the painful area. I've been making it ever since that test, but in larger quantities. Well this same thing can be done with morphine tablets by grinding them up or having the compounding pharmacy make it up. It may be better if they do it because they may have a medicinal lotion that has transdermal penetrant enhancing qualities and this will help the morphine to cross through the natural barrier of the skin.

I'm just thinking this may be doable for the long term because long term oral morphine is not a good thing, as I'm sure you already know. I don't know if it is the same for everybody, but for me, being constipated just makes all other health issues worse! Here is a link to an article that discusses this very use of morphine.

practicalpainmanagement.com...

Another consideration is topical magnesium oil as I outlined in another post. While not likely to be able to compete against a pain reliever such as morphine, it does have pain relieving effects and it can help to allow the muscles to relax a bit which will relieve pressure on the spine and consequently pressure on the nerves. As an added benefit, some people report that mag oil helps with nerve pain, which it sounds like there may be some involvement in Glen's situation. I have never tried to make it, but pehaps the morphine can be added to mag oil? You can ask Glen's doctor or the pharmacy about that possibility.

I forgot to ask, what is causing the pain?

As always, anything I mention needs approval, support and supervision by Glen's doctor for safety and to make sure there are no conflicts with anything else he is using!

Art

glenandgerry profile image
glenandgerry in reply to

Thanks for all the tips Art. We don't really know the cause of Glen's pain. From the MRI, the specialist has diagnosed spinal stenosis. However, when Glen takes Madopar it often helps to relieve the pain somewhat 🤔

He's on morphine patches applied to the skin. He also uses magnesium oil (although not so much since he's been on morphine). He also takes a bath with magnesium flakes which helps him to feel better.

We haven't tried ice packs yet (which you suggested in a previous post - thank you for reminding me).

Glen's just started reading Dr Sarno's book 'Healing Back Pain' which I bought as I believe there's something in his philosophy but Glen is sceptical.

You're right about constipation making all other health issues worse for sure.

in reply to glenandgerry

Okay, morphine patch is not the same as described in that article or what I was talking about because it delivers much more into the system than a topical ointment. It has other molecules in it to act as potent transdermal penetration enhancers. I'm thinking direct application directly on top of the spine for the lotion is more what you can talk to your doctor about in order to limit systemic delivery.

Okay, spinal stenosis as a cause of the pain. Does Glen also have bone spurs? There are different causes so bone spurs will help to narrow it down. Does Glen have herniated or bulging discs?

Has he had fractures or injuries to the spine?

Has he had this problem all of his life?

glenandgerry profile image
glenandgerry in reply to

Glen doesn't have bone spurs as far as we know. The MRI showed a slight bulging of one disc. He's had back problems for about 30 years on and off. He's always had one leg longer than the other but now he's had both knees replaced (due to arthritis) and one of them is permanently bent (possibly due to PD) making his posture so bad - like an 'S' shape & giving him a very odd gait (when he's able to walk). The Neurologists blame the Orthopedics & vice versa......meanwhile Glen is in limbo!

in reply to glenandgerry

Hi Gerry,

For the bulging disc and the spine in general, I have used high dose hyaluronic acid and found it helpful, but only at 300 mg+ /day. I used this product and took one well before breakfast, one well before lunch and one well before dinner to good effect. It took me two bottles before I noticed improvement. Well actually I first noticed improvement by the end of the first bottle and it got better with the second bottle.

amazon.com/NOW-Hyaluronic-A...

Warm baths in epsom salt will likely be very useful as the magnesium delivered from the ES will relax the muscles all over the body and relieve much of the pressure being placed on the spine, joints and nerves. Because his whole body needs to relax, I suspect that it will be more effective for him than simply applying mag oil to specific areas of the body. ES delivers magnesium sulfate.

If there is arthritis involved, you are already aware borax. I have a borax post up now that may have a little more information than I originally gave you, so you can just click on my icon and select that post to read if you want.

Good luck!

Art

glenandgerry profile image
glenandgerry in reply to

Thanks for this Art - and I thought Hyaluronic Acid was only used in the beauty industry for sagging skin! Lol :)

Glen has been taking Borax since we last communicated about this but I will check your most recent post for more info.

My husband has used Cbd oil

. . . and make it quick!

As I stated no disrespect was intended , was just being supportive of someone’s plite . K

GioCas profile image
GioCas in reply to Kwinholt

🌺🍀🌷

Have you considered surgery on your back ? after suffering years of pain with my spinal stenosis, I had a disc removed that was causing the problem, I have been pain free for two years, injections only cure pain for a limited time in my opinion,

glenandgerry profile image
glenandgerry in reply to Ramondo

You are so right.....the injections only work for a limited time, if at all; but we're in the UK & at the mercy of our NHS. Glen saw the back specialist last week (after waiting 4 months) & he said he doesn't agree with doing backs ops as they don't work. That was not what we wanted to hear at all.

So pleased that you've been pain free for two years. 😊👍

Ramondo profile image
Ramondo in reply to glenandgerry

Thank you for your kind wishes, my surgeon was not encouraging me tohave the op due to my other PD problems and age ( 77) but I am so glad that I went ahead , I am in the UK. ( our wonderful NHS service did not cost me a penny.)

Danny,

Even with your pullback in symptoms , do you feel that you are better than B4 B1?

Don

Don,

Sorry to have to say "no " to your question. But my back and hip pain have returned

almost full bore. I'm taking that to mean there's very little residual b1 in my system. So starting tomorrow morning I'm going back on b1 at 1 gr. daily, even though it will be only 4 days rather than 7 of "off time". If the pain alleviates in 5 or so days to the same level I experienced with 2gr. daily, then I'll at least have some valuable markers to present to Dr. C for his evaluation.

hey Zaq11qaz I would love to get my mum to the clinic, but as he's ill I've not had a response back yet.

Did you visit him or try it over the internet?

zaq11qaz profile image
zaq11qaz in reply to adam43star

I emailed him but he's ill and not responding to any type of communication as far as I know

adam43star profile image
adam43star in reply to zaq11qaz

yes thats what I got. If I hear back from the clinic I'll let you know.

Has the thiamine been good for you so far?

zaq11qaz profile image
zaq11qaz in reply to adam43star

Hasn't worked for me but does lots of good for many.

adam43star profile image
adam43star in reply to zaq11qaz

Thanks for letting me know. I wish you all the best

Hasn't worked for me but does lots of good for many.

So Dr C is back in circulation? My husband started taking madopar... This is the seventh day he’s taking it with a very small dosage. This morning he vomited twice.WE wondered if its the drug or dinner he had. Has anybody every nauseated because of madopar.

in reply to Jumex2017

Yes, Madopar or Sinemet or Stalevo (basically all have Levodopa) can be extremely nauseating for the first couple of weeks or so. Sometimes for a month. This is due to Levodopa. The Carbidopa or similar component, which is given in the same tablet as Levodopa helps alleviate the nausea, but give some time for the body to adjust.

I’ve not had any trouble with it.

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