I am the caregiver for my spouse who was diagnosed with PD in 2013. He, like others on here had symptoms of Parkinson’s. They have never been what I considered severe with any of the symptoms. He is now 75 and was put on Sinemet 25/100. He took a total of 6 pills a day for quite some time. I have been on this site for a year now and frequently read most posts. Each time, there would be something I would read that would make me question if my husband really had Parkinson’s. I would always question his neurologist or family doctor. Our family doctor was the only one to listen as he was never truly convinced either. I asked him, I don’t understand how everyone talks about the “off” and “on” times?? He said, with my husbands symptoms, when he takes his meds you should see a dramatic change in his symptoms. I never have!! They just made him tired, loose his voice.
So now, we are taking him off! Weaning him down. Wonder what’s next re what does he have! Anyone else gone threw this and still on this site?
No! Never has had tremors! Loss of smell, in-animated face, light drool,difficulty getting out of chairs, balance once in awhile. In the last year, hallucinations!
I'd heard that doxycycline and Amoxicillin can completely reverse Parkinson's symptoms. We were trying to get Doxycycline in order to see if symptoms could be reversed, but haven't succeeded in getting this medication. Trials in Australia talked about the success of using low dose antibiotics to bring about a remission.
You mentioned a long term use of Amoxicillin, this seems to be key in its ability to stop the Parkinson's progression. I wondered how long your partner used the Amoxicillin and how much? They say for Parkinson's treatments the antibiotic can be used at a low dose. Thank you!
My husband had a third hip replacement as a result of a car accident which resulted in an infection. Unable to Coulter it, he went on cefalexin in approximately 1999. In approximately 2009they put him on amoxicillin, 1000mg a day. 500 in the morning, 500 at bedtime. It will never heal and the hip cannot be replaced again with fear of it not working a forth time.
It’s not symptoms I’m seeing, it’s what I don’t see! His dr has said you should see improvement in his symptoms when he takes his meds. That’s the problem! There is no change! Just more subtle symptoms!
Having read the reply’s about doxy reversing Parkinson’s symptoms, I would suggest you go see a FM practitioner.
Hidden infections alone can cause a lot of the symptoms your husband has.
My
Husband was not helped by sinemet or mucuna, only cbd oil. Here it turns out he has systemic Candida, mold toxicity, Lyme and coinfections, and stealth viral issues.
Hi 2Farmboys, how did you find out your husband has systemic Candida, mold toxicity, Lyme and coinfections, and stealth viral issues ? What test did he take ?
Lyme western blot ( full titers),cd 57/hnk1, igg mold 14 panel, mycoplasma, and a panel of other labs called an optimal chemical panel ( it’s a grouping of tests that our dr puts together to get an overall view of the body and its systems ).
We also watch his monocytes as well...that tells us about the stealth viral issues ( herpes family
Of viruses...there are a lot, we have not done the viral panel yet though as it is more expensive than all the other ones.
Good work 2Farmboys.. There we go.. He will improve slowly for sure and the good thing is you guys did not give up and now he is in good root to improve to get his life back because he was misdiagnosed ..
The main problem with healing is the fact that the mold toxicity comes from the house we live in, and we haven’t been able , because of circumstances that are beyond our control, to get out of it yet.
My husband was diagnosed with PD in 2008 and put on Sinemet—3 Times daily for 8 years. Never saw it do a thing. He had no tremor but shuffling walk, soft voice, micrographia, tiredness. He fell in 2016 and shattered his femur-woke from surgery (finally) much worse. Diagnosis was changed to Lewy Body Dementia—under the parkinsons umbrella but different. We weaned him off Sinemet and he improved cognitively, though he is very stiff now
Oh my... I’m very sorry to hear of his fall. But your story does sound familiar. We’re you able to notice any other changes in his symptoms for the better? Did any of his milder symptoms go away?
NOrm1025, as I said to guy1947 speak to your family doctor to arrange on urgent appointment to a Movement disorder clinic for your husband and let them exam him professional way to make sure regards his symptoms. Meanwhile arrange a mercury test as well, just to make sure he is free of toxicity in his body.
We have a movement disorder specialist who has done this already. His first answer was , raise his meds from 6 to 8 pills a day!! That didn’t happen. Now that our family doctor is on board, he has conferred with the movement doctor and he agreed that we should wean him down then to see where we are!!! I sent the family dr a video of my husband walking around in the morning without the assistance of a cane or walker. (Uses them sometimes when going out). He asked if he could share with movement dr which he did! I tell you, they to get stumped I think and “guess “ as they go!
It just tells me one thing I'm sorry, time for a new movement disorder specialist as well. Perhaps go to a different location and don't talk about your previous specialist to the new one. And get his, or her opinion to. It happens when two not agreeing about the cause or symptoms. Believe me go until you 100% sure the diagnosis. And don't settle.
Not that easy. We are in a smaller city. As it is the neurologist come here. On a side note, our neurologist recently retired because he has....Parkinson’s!!
I went to a second MDS for his unbiased opinion regarding my original PD dx and unknown to me he had access to my first MDS report and mentioned it to me afterwards!! Ruined the point of my visit!
We changed neurologists but the LBD diagnosis stands. He's pretty textbook. Cognitive/executive function issues were becoming apparent about the same time as the PD symptoms. He never learned to walk again after the 2016 fall. I've seen cognitive improvement about every three months since the surgery. Even now, though other LBD symptoms are stronger, he is better cognitively than he was at Easter. Easter was better than Christmas. Now I'm all about vitamins and supplements and I have magnesium spray ( for sleep) I will try it. Lately I've been giving him Sam-e and I think it has helped in some general way.
It was a good idea to change neurologist sassy.. Is he appointed for any rehabilitation for his walking to gain his mussels back ? And you said he has a sleeping issue, did you noticed any anxiety or sweating in his hands ?
And there we go, on other neurologist mistake for Parkinson.. He's stiffness will take time to go away sassy.. Is he takes any vitamins like Allithiamine, or magnesium ? Concentrated magnesium spay will help his stiffness as well, you can order online for him and movement rehabilitation should be set it up by his family doctor..
And I'll look into allithiamine. In the past I have tried therapeutic doses of coconut oil, vitamin e, MCT oil, but discontinued when stringer doses ended in explosive diarrhea 😖
Hi guy1947, you should... I was writing earlier in this forum back some weeks ago that lots of folks diagnosed for Parkinson and given Sinemet for long time causing more harm then any good ,meanwhile they don't even have Parkinson. I suggest get on appointment to a movement disorders clinic and let the professionals do the exam, not just only a simple neurologist. This days lots of neurologist out there intend to do mistakes big time other illness with Parkinson. On other thing do a mercury test as well.
Exactly!! I feel for you!! 10 pills a day! And as our dr asked, do you see a “drastic “ change in “any”symptoms after taking your meds??? We weren’t which kept prompting me to keep asking questions! I have been on this site for a year and always read so many different ideas and would take everything in to try and figure this out. Thank god they started listening to me! I only want the best for my husband! Keep up your fight! Keep asking questions!
My bro has lived w me for 2 yr+ now and he takes 6 C/L daily. He was dx in ‘15 n has been on C/L for all this time. I have NEVER seen an off time for him. I’ve tried to help him think outside the box an that maybe he doesn’t have PD but he feels like whatever it is C/L is his only hope. I’ve given up. But it’s too sad.
Is he seen by a Movement disorder specialist beside only his neurologist ? Give him on other try Ajssister, don't give up on him, try to convince him just to go this one time and lets see what the specialist say ..
I think in the beginning when your told you have PD and their suggestions is to take Sinemet, you do! Because they said. You don’t know at that pint what questions to ask. You just assume they know what they’re saying. It’s that after some time, you may or maybe not realize are there changes? Is this helping me? I think it’s how aggressive you are or maybe your caregiver is!!
I know to much reading of this stuff dont help this world has a pill for any thing all you see I med ads and there side effects you have to think about what you put in your mouth.. ever see a cowboy w/pd.??
Hi chco, you 100% right, but the other hand I don't think we existed that time in the western world. Who knows what illnesses where present that time. In todays modern world with this amount of population and sicknesses like aids and so on makes you think why didn't existed long time ago like Parkinson. There are one simple answer I can think of it.. Today's modern world to much chemical use about everything including food what we eat. Lots of poison all around. This days to be a doctor or a pharmacist the biggest business. But there are good doctors exist who wanna save you not just making money on you, think about patients just like numbers. Like some car mechanics, if I don't fix your car properly the client keep coming back... But to find a good doctor or a good mechanic who don't take adventige of you, good luck.. Sometimes you have to take your life in to your own hand if you wanna save yourself and get knowledge about your own medical help to be healthy. This forum is full of good people who realised we have to help each other , this is the only way we have more knowledge to survive.
Yon hit the nail on the head, people in the old days lived a good life off the land and one good doctor for the whole town.i wish I lived in the old west no school shotting goinn on a shorter life,but better than going to rest home to die from this messed up world.i live in the country pop 150 Klamath river ca ready for salmon to run in my back yard.try to live off the land as much as possible,hate doctors and there meds!
I haven't been confirmed by a neurologist that I have PD. But I saw an endocrinologist in the spring, because being thyroidectomised and only being prescribed T4, I felt I had hypothyroid symptoms. The endo. felt I had PD, poor hunched gait, slight tremor of right hand when I saw him but only very rarely since. No sense of smell etc. Appointment with neurologist not until end of October so as I felt like death:
I put all the symptoms into google with first hypothyroidism and then PD, and guess what being troubles at cell level most can be either complaint. So decided to tackle vitamins etc.
Oral vitamin D cured the aching fatigue, magnesium cured the aching muscles and T3 returned the sense of smell and the will to live rather than die....gaits still wrong and eyebrows still missing, work still in progress.
I also read a paper which said that 45% of a group of PD suffers were hypothyroid and only 10% were in the control group? So I think metabolic illnesses are difficult to distinguish and diagnose.
Parkinson's tremor is characterized by a "pill rolling" tremor (thumb and index finger). Is this the type of tremor you experienced? I am asking as my husband had total thyroidectomy in 2010 and his symptoms started soon after that. He was taking Synthroid, but doctor had to change strength, up and down several times. Finally, he had a thorough thyroid test and doctor with our compounding pharmacist decided on a compounded thyroid med. However, he has the kind of tremor I described, pill-rolling, Parkinson's characteristic. Thank you!
Well the thing is that my mother has a similar history as your husband. She took cefalexin for two years due to an infection in her femur that has never been able to be cured (and will never be cured as is in her bones she had managed it for 50 years since childhood) then she had back surgery where titanium screws were implanted and six months after her surgery she began to show some PD symptoms: general stifness and a little tremor, however her mind is perfect and her sense of smell is better than mine. She has started neupro patchs but I think she is having allergic reactions to them and seems that they do nothing, I don't see them alleviating her symptoms at all...
Interesting info! So is her doctor suggesting the second surgery is related to the onset of Parkinson’s? It was my husband’s orthopaedic surgeon, who examined my husband for a knee replacement that suggested my husband may have Parkinson’s and should be seen by a neurologist. At that point we were not aware of any symptoms other than an un-animated face the surgeon saw. Why did they suggest the neupro patch verses other common levo/carb medications?
No. The Drs. don't see a correlation, however as the PD symptoms' coincidentally started after her surgery I researched for links between titanium and PD and found this:
Regarding the Neupro they suggested as her symptoms are mild. She has just about a week in so we're just waiting and seeing for improvemnts. She was diagnosed by the Dr. who performed the back surgery last year but she just decided to start treatment about two weeks ago.
Mild symptoms can become very strong symptoms just a matter of days, months, and 2-3 year after.. Check for infection as well, but the mercury test must be done to clear your mind of possible metal issues..
Interesting, I had several pd symptoms. It am also on siminet 12.5 x 6 per day. I have wondered too. I did have a dat scan for verification so felt that was conclusive. I am now taking part in a trial (no new medication) and part of that was another dat scan...it will be interesting to compare the two. The first one was done in 2012.
The trial has an extremely long name, but I think it is to do with neurological networks in the brain, and the effect PD has on cognitive behaviour. There is a lot of cognitive testing, and my husband and I are both on the trial. Me because I have idiopathic PD and him because he doesn't. We have both had MRI scan, DAT scan, two PETT scans a lumber puncture and lots of cognitive testing. All good fun!! I am also on a trial which is using smart phones to do a follow up consultation rather than the patient having to come to the hospital. The first trial is for a year, and the second, a week. Have you looked into the B1 protocol by Dr. Constantini. There is quite a lot of (admittedly) verbal praise on you tube, health unlocked and myparkinsonsteam. I have been on the B1 regime for just over a year, and the difference it has made is phenomenal. I would always say you have to ask your PD specialist or GP. I take 2000mg of B1 a day, and both my PD nurse and GP said it would not do me any harm, but were skeptical of the good it would do. As long as no harm is done, I feel it is worth a try. I feel so much more stable, I sleep better, and lots of the other PD symptoms are relieved. Take a look. Good luck
It confirmed it, and I have a note of my readings which I shall compare with the newest dat scan - unfortunately the trial I am helping with does not come to an end until the late spring of next year so I think I will only be able to compare then. Interesting though.
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