crying out loud for help..

[Divii]

I have deteriorated this 2023; YOPD, diagnosed 12 years ago, delivered a baby four years ago. Will be celebrating (hopefully) 40th birthday in Q4 this year. On Credanil®. (Levodopa/Carbidopa)- 125 mg since then along with dopamine agonists pramipexole 0.375 mg ER. This year tremendous fatigue, brain fog, loss of memory, increased stiffness and rigidity especially shoulder n neck, loss of muscle mass esp on right side making full time client facing job difficult. Neuro appointment coming soon. Also on HDT 1.2 gm everyday. This week got blood levels done- low hemoglobin n ferritin including cortisol, ok vit D, b12 and calcium although RLS not an issue but fatigue, anxiety, stiffness making my condition deplorable. Started (iron as iron (III) hydroxide polymaltose complex) today but have to take credanil every two hours (break 125 mg into two). Night i become like a zombie dragging myself, full time job getting difficult..help me please…

[PNIAuthor60]

Wow! My heart goes out to you, Divii, with all that you are struggling to manage. I am happy to offer a listening ear; my youngest son at 37 was diagnosed with early onset as well and his struggle is deep as well. Let me check with someone who may be a good resource for you -

[Divii in reply to PNIAuthor60]

thanks so much for your help and support

[CaseyInsights]

My spouse had somewhat similar problems, in her last year and a half of her work life: she felt that she could not go on as the fatigue was too much.

For the fatigue I used 500mg of Niacin as Nicotinic Acid. I used the time released version as so

amazon.com/gp/product/B0041...

You will also need to take a matching amount of TMG - Trimethylglycine to ensure that the Niacin is effectively utilized. A methylation issue.

For the stiffness use Magnesium and make sure you hit at least 100% of the daily value. Without this high daily intake of Magnesium your heavy B1 supplementation would be under utilized. Use Magnesium Chloride as a spray on very sore/stiff areas of back and neck.

Avoid Magnesium Oxide - not well absorbed.

For the loss of muscle mass physiotherapy is suggested. My spouse worked with one - online - to combat stiffness and maintain flexibility, and strengthen her weak side.

For the low iron, I was in a bind as iron supplementation, particularly with PD could be problematic. This approach was suggested to improve Iron absorption

Lactoferrin 250mg per day

LP299V - L.Plantarum Probiotic

This suggestion is now in the try out stage. Will lab check the response in three months.

Hope you find this of value 🌹

[CaseyInsights]

…additionally you can extend the life of your dopa dose by pairing the dose to a Quercetin/Vitamin C combo like so -

amazon.com/Solaray-Querceti...

In effect it will cut your Dopa consumption.

[LindaP50]

Sorry you are going through a lot right now.

Did your doctor who ordered the blood work go over the blood work results with you, and make changes to your meds or suggest supplements? I'd give the doctor a call and not wait for the neurology appointment.

[Esperanto]

Although your b12 is just within the norm, it is very low, especially in combination with PD / medication. Everything indicates anemia. The description of your symptoms, especially fatigue, also points to this. So I assume your doctor can help with this. What he may not be looking at is the possible connection with a B6 deficit. Just to be on the safe side, get tested for this. 🍀

[LAJ12345]

you could try a clinical dose of Hardys Daily essential nutrients with added vitamers. It has a broad range of micro nutrients and other compounds in it. Also Restore Gold. These 2 have really helped my husband.

Try and tabulate your doses and symptoms every hour for a day or 2 eg something like:

Time. Dose. Symptom

7am 100mg madopar Frozen /shakey

8……….. ok

9 …. Rigid

10 100mg madopar. Ok

If you find the rigidity is occurring about 90 minutes after your levodopa it might be you are taking too much. If you are worse at later in the evening you might not need as much in the evening.

What is your diet/ exercise regime?

[Divii in reply to LAJ12345]

thanks for your wise words. I’m not exercising as much due to fatigue but have started jumping on my trampoline today

[LAJ12345 in reply to Divii]

Have you increased or changed your meds recently? From what I’ve seen with my husband every time he seems to have got a lot worse it has coincided with increased or changed meds. If you have added anything recently I would try slowly reversing it.

If you can get the levodopa in a tablet you can cut or smaller dose I would reduce the size of the dose and instead take them closer together.

For my husband the nutrients work better than the the drugs. He only uses the 50/12.5 white madopar and takes 1/2 an entacapone and a mucuna pruriens from NOW with each dose . He has been through some hellish times but at the moment is in a really good space.

With nutrients doctors only seem to give tiny doses but when you are unwell mega doses seem to be required.

[Edge999]

im so sorry for you. Something that helped me tremendously lately is cutting out all sugars. If you are desperate try it and let me know how it goes.

[Divii in reply to Edge999]

thanks, Edge. I have not cut all sugars n dairy yet but I don’t take much either

[gregorio]

So frustrating, have you considered the answer might not come in a bottle. I would consider a complete change of diet, it worked for me. happy to discuss

[Tonypet in reply to gregorio]

Please discuss

[gregorio in reply to Tonypet]

replied below

[Divii in reply to gregorio]

thanks, Greg! Happy to hear your feedback. Please share your dietary recommendations.

[shirlzoni in reply to gregorio]

gregorio would you mind elaborating on your change of diet that helped you so much? I’m always looking for ways to improve our eating habits that might help my hwp to feel better (and me too!).

[gregorio in reply to shirlzoni]

I have replied below in some detail. Basically I went on a keto diet, simple as that, about the same as a medateranian diet. This problem we have starts in the gut and inflammation in the brain. I cut carbs almost completely. I have a few posts on the site you can view

[shirlzoni in reply to gregorio]

Thank you so much for the quick reply! Will have to figure out how to do that with my husband who has gastroparesis and can’t eat much fiber or fats. But at the very least we can cut out some simple carbs to start with. As his symptoms improve maybe the digestive problems will abate as well. Best to you!

[gregorio in reply to shirlzoni]

I believe I rsspond so well to exorcise and diet is because I do not take meds, there is a mountain of info on youtube about diet and PD, I never stop looking. 74 and going strong😄

[gregorio in reply to gregorio]

you could start with Dr Eric Berg

[shirlzoni in reply to gregorio]

So glad that’s working for you and you're staying off meds! Dr. Berg is a good place to start thanks.

[Divii in reply to gregorio]

Kudos, Greg! Hope you continue to do well and enjoy life to the fullest..

[gregorio in reply to Divii]

I will try and give it my best, I will be fine as long as my golfing pals put up with me , every day I stsnd on the first tee, I am a winner. You have received a lot of information, help and advice in these replies, whatever you try, give it 100% aand time to work before giving up..

[Divii in reply to gregorio]

very true

[Michel0220]

Hi Divii. In addition to the advice already provided I would also suggest:

- daily exercise: try to find something you like that you can practice at a level of intensity that is aligned with your capabilities, even if those might be currently limited by fatigue and stiffness.

- mindfulness meditation to help you manage anxiety. You can start with 10/20 min a day on one of the many apps that are available and build up from there (maybe with a meditation coach).

Having the right medication is critical but you also need to help your body help itself as much as possible.

As you can see from this forum, you are not alone. Stay strong! ❤️

[gwendolinej]

Divii, please look at my post on Mannitol. It works for some and not others. It’s just that your symptoms match my husband’s, as you will see. It was like a miracle. In his case, it stopped any progression for about 2 years.

Gwendoline

[Divii in reply to gwendolinej]

thanks, Gwen! How’s your hubby now? What happened after two years?

[gwendolinej in reply to Divii]

He gradually got some symptoms back, but didn’t revert to the way he’d been, as in no fogginess or dizziness. His facial mask was the first thing I noticed.

We then tried the B1 protocol, but it sent his blood pressure through the ceiling. Since he started on high dose vitamin C for his constipation (as suggested by park_bear) not only did his constipation problems improve dramatically, his blood pressure. both high and low, stabilised. To quote the GP, “he has the blood pressure of a 21 year old”.

Unfortunately he’s had delirium a few times over the last year, which has caused cognitive problems to the point where I feel I can’t take care of him anymore. He’s now in care at a facility at our retirement village. I’m waiting for him to settle and then we are poised to start the B 1 protocol again Fortunately I have the doctors on side.

What a roller coaster, I’m exhausted.

Please keep us posted, and good luck.

Gwendoline

[Divii in reply to gwendolinej]

best wishes to you too, Gwen!

[LostInH]

Hi Divii, first thing is - try to stay calm as being stressed may worsen your symptoms. I had a similar reaction on medication. To reverse the situation 'back to normal' I reduced Sinimet by half and was taking it with Mucuna. My condition improved on the second day. Then I started to take vitamin B complex and attempted exercises gradually.

[Divii in reply to LostInH]

thanks so much for your kind words; I agree I tend to lose it as condition worsens. But I’ve tried Mucuna. Didn’t work so well with me. Wondering if I should experiment with MP again. Neuro does not have any opinion

[LostInH in reply to Divii]

I use a quite simple preparation: 50mg of Sinemet with 7g of Mucuna diluted in 40g of hot water or green tea and add a tea spoon of honey. Mix it well, infuse it for 5-10 minutes then drink it all. You are right - Neurology doesn't provide Mucuna unless you live in India. If you live in US you can buy on Amazon Mucuna standardised, but I prefer the raw powder as it has many other useful components not discovered yet by modern medical science. But Ayurveda has been using it for 5,000 years without any side effects. The only side effect I am aware of is nausea due to a high dose. There is also an Indian product called ZanDopa. It is quite strong as Mucuna in it made bioactive in it and the measuring spoon they include is for 9g, which is a bit too strong for majority of people to start with.

[Jmellano]

hi divii I understand what u r dealing with, my fatigue is debilitating and my symptoms are progressing and new symptoms are appearing. I was diagnosed in 2015 . I attribute a lot of my issues to disease progression and my PD honeymoon is over. I have no tremor, buy bradykinesia makes me so slow. My neuro wanted to check 3 things that may be making fatigue worse; check blood pressure fluctuations, sleep issues (apnea) and treating my depression. Also seeing dr . Laurie Mischley , a naturopath. She is checking my b12, she says b12 value in blood test does not necessarily reflect deficiency and uses homocysteine and MMA values to determine if true deficiency of b12. B12 level may be high but body may not be absorbing properly. I am waiting for lab reports to come back and will update this post accordingly.

[Divii in reply to Jmellano]

thanks so much for your guidance; my b12 towards lower range too

[LorenzaS]

Dear Divii , recently I found out , through an extensive blood test , that I had candida in my intestine/stomach. Doctor put me on fluconazole for 1 month. After 10 days brain fog was gone and PD symptoms got lighter and lighter , now I have reduced the PD symptoms by 60 or 70% . Our guts are very important. Please check your microbiota.

[LorenzaS]

also Wi-Fi, EMF and all electing garbage make me feel worse, I got rid of my Apple Watch as it was disturbing my functionality

[gregorio]

Happy to discuss what has worked for me. I have many posts and you could go back and read them but the fact is from my diagnosis 6 yrs ago I was prescribed Azalect and L/C.. I started to feel likee you decribe and I went 24/7 into research on PD. after 3 months I dumped the Meds and concentrated on exorcise, high dose B1 and a Keto diet. I also take Macuna, NAC and NADH.. This is alll about inflammation of the brain and gut health, I am 74, play golf 3 times a week and stay away from Carbs.. my tremors are annoying sometimes but thats not a problem, happy to have them and lead a good and normal life

[Ethin]

Dear Divii, haven't got a patent recipe, just joining in to say that I know how absolutely terrible fatigue feels and am very sorry to hear what you are going through.

At times a chinese herbal tea specifically put together for me by a TCM doctor has helped. Otherwise, stress reduction is a big factor. Easier said than done, I know, especially with small children at home.

All the best!

[Divii in reply to Ethin]

thanks, Eth

[Godiv]

I’m so sorry you’re going through this, Divii. I wonder if the neurologist will want to try to increase your Sinimet. I don’t know if that’s good or bad. But I do know otherwise people on the forum will help equip you with knowledge before you see the neurologist so you know what to do if he or she wants any kind of medication change . Because it doesn’t seem like they’re interested in trying anything else. Some of them anyway.

I hope you feel better. And that this gets straightened out so you can look forward to a great Q4. For this year and many other years.

[mhberman]

give thought to using continuous wave infrared light stimulation at 1070nm. Proven effective with COVID brain fog subjects. Several PD users are seeing similar results. See neuronic.online for info.

[Intrepid200]

Please don't get offended by this my suggestion like you I was YOPD for a period of time I was not able to button down my shirt My meds list was extensive then it appears to me that I might be taking too much different meds I started to advocate for myself and I told my neurologist that going forward I will be taking one prescription medication and I decided on Rytary my life has improved.

My list of meds

Rytary 75/195

B1 500MG

Baclofen 10 MG

Only pain I am having is muscle pain in my lower back and shoulders

My family believes in Prayer

[Rupa88]

dear

I am so sorry that you are going through this difficult time. Iron deficit probably playing a role.

Have you heard about FUS PTT procedure in switzerland.?There is a facebook page named Focused ultrasound for parkinson. Please check it out. That might br a good option for you.

Hang in there and stay strong. We are all fighting this beast❤️

[Divii in reply to Rupa88]

Thanks so much 🙏

[Susan80]

My suggestion is to spend some money and see a functional medicine doctor. They have insights that primary and neurologist don't have. Good luck honey. Hope you find your answers

[Divii in reply to Susan80]

Gr8 suggestion, going to a tcm physician