Medication not working

[jeeves19]

Hi all. I’ve had this occasionally with one dose but never like this and I’m a bit worried. It’s Day 3 today and nothing I take appears to be having any impact on my symptoms (Madopar, Mucuna or Ropinerole). I’m unsure if I’m ‘I’ll’ or if this is aches due to the PD. I was sick yesterday morning for some reason. Oddly, I have a headache this morning and try took some Ibuprofen for this. It didn’t touch the headache so seemingly other drugs aren’t working either? I suspect that this is pointing to a poor gut absorption issue, but how I combat this, I’m unsure. Any ideas? 🤔 . Thanks

[laglag]

Have you been tested for Covid?

[jeeves19 in reply to laglag]

Not for a while Debbie. Maybe I’ll give that a go. Thanks for the suggestion

[laglag in reply to jeeves19]

When you feel good enough, let us know how you're doing.

[jeeves19 in reply to laglag]

Thanks Debbie. I think that I need to invest some time and resources in gut health. I feel a little better this evening. Thanks for your concern.

[ruff1]

Try some Lactulose ? Even slight constipation can slow the gut enough to stop/ slow down absorption.

[jeeves19]

Thanks Christine

[WinnieThePoo]

I'd second the "get a covid test" suggestion. Omicron may not kill you but it can wipe you out for a week or so. As for absorption, drink plenty of water, eat plenty of plant food, try some Kombucha, and maybe yoghurt or kefir. I toast my little bacteria buddies with red light too - who knows?

[jeeves19 in reply to WinnieThePoo]

Thanks Winnie

[chartist]

I agree with the covid test. A friend of my sister had covid with a headache that she rated as a 12 on a scale of zero to 10 and Tylenol or ibuprofen would not touch. She also said every joint in her body was killing her. She went the high dose melatonin route and the #12 headache was down to a 2 and all the body aches were gone by the next morning. A morning later and she said she felt back to normal, but continued the HDM for 3 weeks to try and avoid long covid and longer term effects seen in covid. She had no further problems. Get tested!!!

Art

[jeeves19 in reply to chartist]

Cheers Art🙏

[Sonshineman1 in reply to chartist]

Pardon me for asking but what is the high dose melatonin how much do you take and how often

[chartist in reply to Sonshineman1]

This should answer your question :

healthunlocked.com/cure-par...

Art

[Sonshineman1 in reply to chartist]

Thank you

[Sonshineman1 in reply to chartist]

Thank you

[Manypony in reply to chartist]

What is HDM

[chartist in reply to Manypony]

HDM = high dose melatonin.

This is some of what I have written about melatonin on this forum :

healthunlocked.com/cure-par...

healthunlocked.com/cure-par...

healthunlocked.com/cure-par...

healthunlocked.com/cure-par...

healthunlocked.com/cure-par...

healthunlocked.com/cure-par...

healthunlocked.com/cure-par...

healthunlocked.com/cure-par...

healthunlocked.com/cure-par...

healthunlocked.com/cure-par...

Melatonin has shown benefit in multiple health issues in multiple studies and the above is only a small part of what melatonin has shown benefit for.

Art

[Gioc]

Here we got this product called Sirio based on Melevodopa ie an effervescent form soluble in water and more assimilable than normal C / L. It is prescribed for its characteristics to solve sudden blocks and difficult moments such as the morning. Quote: “Levodopa is, in fact, notoriously characterized by: poor solubility in water, chemical instability (oxidation), enzymatic instability (decarboxylation). Based on these premises, the Sirio® pharmacological specialty was developed, in effervescent tablets containing melevodopa hydrochloride + carbidopa. "Link in Italian, in English I did not find it. sorry.

parkinsonitalia.it/sirio_2/

[jeeves19 in reply to Gioc]

That’s very interesting Gio . Thanks for that.

[JANVAN in reply to Gioc]

Hello GioCas !!

That product that you take, can you buy it simply or do you have to have a prescription from the doctor ??

[Gioc in reply to JANVAN]

Hello JANVAN,In Italy you have to have a prescription from the doctor.

It works well, it gives me a good shot of levodopa in 15 minutes, even too much.

[gl2238 in reply to Gioc]

Thank you for your suggestions, I will follow up on your information.

[SilentEchoes]

Should check for UTI also.

[hanifab23]

Join the club I am having the same issues DrOrder apokyn but the C o pay is 5000.00 per C konth

[Zella23]

Our first symptoms of Covid were headaches and feeling slightly unwell. Had for a few days and didn’t test positive immediately. I just thought we had a mild cold, but the headache was the persistent symptom. Definitely worth ruling that out if you have tests at home. Hoping you feel better and meds working properly soon.

[ddmagee1]

Hope your feeling better soon, Adam! Take care!

[quiz0019]

I had Covid and the first symptom was headache. I just felt generally unwell and the worst was exhaustion. I'd get a Covid test for certain.

[jeeves19]

Well I got a negative test last night. Damn. A positive would have explained a lot. Thanks for all your insights and support gang. Hugely appreciated 👍😊

[Wonky-Bride in reply to jeeves19]

Have a PCR too. My eldest and his wife both had; classic symptoms but continued to test negative on the lateral flow until they needed a PCR for business travel, which came back strongly positive. This was their second round of infection, their 3 & 5 year olds included.

[WinnieThePoo in reply to Wonky-Bride]

Ditto. Omicron often doesn't show on lateral flow

[jeeves19 in reply to Wonky-Bride]

Good thinking

[Buckholt]

Hope you have a proper response soon. (Can only suggest you take on an empty stomach and use plenty of water or better still, squash)

[Priscilla13]

Hi jeeves,Levodopa, for example, is very much affected by gastric problems. Have you tried a stomach protector, antacid, etc.? And with lactic ferments? Sometimes when you have the impression that the absorption of levodopa is latent it may be useful to eat a piece of bread, immediately after the drug to stimulate the transit. The stomach must be a fast transit site for levodopa otherwise it risks being broken down by gastric acids before reaching the small intestine, where it is absorbed.

This is my experience.

[johntPM]

Have you recently changed to a different generic drug or to a different supply of Mucuna? I don't think it is this, but it needs eliminating.

Similarly, even in advanced cases of PD there continues to be a limited amount of endogenous production of levodopa, When you get up in the morning, before you take any drugs, do you feel well? Has this changed recently?

One of the difficulties medicating for PD is that there is a non-linear relationship between the dose and the symptomatic improvement. Typically, a PwP will take a dose of C/L and nothing will appear to happen for round about 30 minutes, then you will quickly power through to your optimum performance level. It is as though there is a threshold that needs crossing.

[jeeves19 in reply to johntPM]

Thanks John

[Fachgynan5]

For gut health I take the pre-biotic Inulin which is readily available in powder form. I've been taking it for years and found right away it is beneficial (it causes rumbles but eliminates embarassing odours).Following my PD diagnosis, I started taking the pro-biotic Lactobacillus Plantarum PS128. I purchase it as 'Neurobiotique' from a compny called Synergia in France (I'm in UK). With the cost of shipping addes, it costs about £1 a day. It is in powder form, one small sachet a day, so easy to store and administer. I haven't noticed any direct effects, but there again I can't see inside my brain and I'm doing lots of other stuff - exercise and other supplements.

The main thing for me is to try to push back against PD and if I'm getting a placebo effect who cares, the trying is important too. If you're not doing prescribed exercises, do investigate - look up Neuroplasticity and Neuroprotection. But start with the Inulin, it's easiest and good luck.

[jeeves19 in reply to Fachgynan5]

Thanks 🙏. I’m in the U.K. too.

[AaronS]

Drop sugar completely....that stuff is BAD

[jeeves19 in reply to AaronS]

I can’t ☹️

[justhavefun2]

I had a day earlier this week where I was nearly inoperable. I've been able to eat protein an hour before/after dosing. However, the following day I moved all my protein intake to the end of my work day and I was buzzing right along again. My neurologist has also suggested chewing my pd meds with a carbonated water chaser for faster absorption in the past. I sure pray you're feeling better soon! It's no fun to feel so horrid and it's a bit scary, too!

[jeeves19 in reply to justhavefun2]

Thanks 🙏 . The only new thing recently is the sublingual B1.

[enjoy2013 in reply to jeeves19]

Remember that symptoms' deterioration could be caused by thiammin dose being too high. Cabbage can help with upset stomach

[janers]

hope you feel better soon!

[gginto]

Hey! Have you checked out this probiotic- Solace? it's a strain designed to benefit the brain specifically... also there is evidence it helps with neurological conditions...please check it out- I'm gonna get some. Good Luck!!

solaceprobiotic.com/?gclid=...

[Trailing]

No matter if you are dealing with COVID or not upping your vitamin D levels can only be helpful for your immune system.

[gl2238]

Welcome to the club of Gastropheris sufferers. This disease as well as Paralytic ileus and Abdominal issues are the result of the progression of Parkinsons. The Gastropheris slows, delays the movement of stomach contents to the small intestines where most meds are absorbed into the blood stream. The knots that many sufferer get in their abdomen is actually considered a Movement Disorder (muscles stiffening). The majority of neurologists including Parkinson’s specialist are not fluent in treating this aspect of full spectrum Parkinsons. I suffer all of the symptoms including Fibromyalgia. As I compose this note to you and the group. The Fibromyalgia is a bigger problem. The issue with delayed gastric emptying, your symptom), can be whittled down to just a few meds that may help. These are Propulsid, (Cisapride) – not available in US, Gimoti (metoclopramide), Reglan (not recommended for use in Parkinsons) and Domperidone also not available in the US. There are times when, even with an empty stomach, the GI issues prevent the absorption of med into the blood stream which also means that the strong pain meds i.e. Oxycodone, are not useful for even a little relief. I eat like a bird to try helping digestion.

The member of the forum that wanted to know how to treat her Parkinsons and Fibromyalgia I would say, if you do not also suffer with Gastropheris, than the stronger pain meds will help with your pain. I.e. Oxycodone or Dilaudid if Pain > 8.

[jeeves19 in reply to gl2238]

Thanks for that post. Very generous 😊

[parkie13]

The last few months I have been experiencing acid reflux and stomach problems. I also noticed that my Carbidopa / levodopa was not producing as good results as before. I begin using on as-needed basis, small amount of baking soda for cid reflux. Also I started using again, have not used it for a long time, black walnut extract. Through the decades I have used the product and I keep on going back to it. This has made a tremendous difference in my levodopa response , I can move again. The black walnut and other ingredients in it kill the bad bacteria . Mary

Bright colors

[jeeves19 in reply to parkie13]

Very interesting Mary. Thanks for that 🙏

[AaronS]

Hey again mate, when my meds seem to be dragging on when kicking in, my wife grabs a massage gun and uses it on my back, predominantly directly to the left and right sides of the spine. I find this helps because the greatest amount of nerve connections are in your back and the spine is literally the main highway of your central nervous system. Because PD slows down nerve response and activity in general I find the massage gun kinda gives the nervous system kind of a hand/ reminder to pick up its act and to do its job.

I'd suggest any one with PD to try a massage gun, its also great on the lower back and inner hips when your posture is being extra bad and your lower back kills and your back is inflamed

Hope this helps

[jeeves19 in reply to AaronS]

Thanks Aaron. How’s it going with you? Okay?

[AaronS in reply to jeeves19]

Hey Adam, its interesting mate before Christmas i had Multiple days where i was doing really well, I could get out of bed easily enough, 2 doses of madopar and generally doing well, but then I caught up with family over Christmas and I got sick (not Covid19) but there was something else going around, and the family catch up is a huge emotional drain on me.

So currently its bit of a struggle to get back, I have had a consultation with John Coleman and that just made so much sense.... but the things I was doing previously just are not working as well as they formerly did, so I'm thinking my immune response isn't so good at the moment, so I have been researching Stealth infections and that may explain a few things. In other words im fighting the good fight mate

[jeeves19 in reply to AaronS]

I like John and do believe that he cured himself but I have no idea how he did it really.🤔. The main weapon in his recovery seems to have been that bizarre product called The Aquas which sounded to me like snake oil of the premier league 😊

[kevowpd]

Nothing from our mate yet?? 😉

[jeeves19]

Maybe he takes the weekend off 🤔

[Godiv]

So sorry to hear that. It’s good you got tested for Covid, but don’t despair. (Boy it’s funny to be upset at a negative test LOL, but I understand.) I didn’t have Covid but months ago I felt very inflamed, and felt like I had a fever — but I didn’t. Medication didn’t work well at all. It might’ve been a mild UTI. I felt too horrible to go anywhere, so I went through telehealth and got some thing for the possible UTI. I don’t like taking antibiotics, but whatever it was, it did clear up. I mentioned it to the movement disorder doctor and she said that she wasn’t surprised that I had a parkie med poop-out. I didn’t do much at all for those few days and I couldn’t really anyway.

Plus, I wonder if you would get a headache if you were theoretically under-dosed. Everyone is different, but I actually get a kicker of a headache when I overdo with the levodopa for emergency use. That probably doesn’t really apply though.

You could’ve gotten a false negative Covid test, or have a UTI, even a mild one, and like someone said, and don’t you just love this? How we’ve kind of given up dignity and privacy? 😂Constipation will give you a headache and make your medicines less effective. And I don’t know why I find it troublesome to talk about bowel movements ha. Anyway, I think you said you were feeling better so that’s good. I mean there are so many little viruses and things out there that you might’ve picked up some thing. And if you were fighting off something like that, maybe it makes sense that the Parkinson’s symptoms would be worse. Our bodies probably just don’t have enough mojo to deal with more than one illness at a time.

I hope you feel totally better soon. Don’t forget to suck down tons of water.

[jeeves19 in reply to Godiv]

Thanks for such a nice constructive response K. The body and it’s moods are so complex isn’t it? I think one can only exercise, eat well, fast sometimes, take B1 and hope for the best eh? Oh and get some good sleep if our condition would allow!

[Godiv in reply to jeeves19]

You're welcome, A. We have complex bods and a complex condition (or conditions). Can we tell Parkinsons "sod off"? Or is that not correct or horribly offensive? (Another phrase rolling around in my head.)

I hope you're feeling better.

[jeeves19]

I am. Thanks for your interest and good wishes. 😊