I need help. .can’t fix the problem. Am on B-1 protocol and taking Mucuna Pruriens. Am working with Dr C on the B-1 adjustment but a few weeks ago I could walk and jog for an hour. Now I can just walk that same time and my knees ache and feel weak all the time. Anyone got any possible solutions? Too much/little of something?
How do I solve the knee ache and weak low... - Cure Parkinson's
A couple of thoughts come to mind. One, your knees may not be in the greatest shape and the extensive jogging may have aggravated an underlying, but existing knee issue. Jogging is hard on joints, especially knee joints and will quickly expose knee problems! Another consideration is that knee problems and other leg and foot pain can originate at the spine. The easiest way I can think of to eliminate this potential is by icing your back for several days in a row, specifically your spine. If the icing improves the knee pain, you now have a clue. You can also try icing just the worst knee and if that relieves the pain then you likely have an underlying knee issue. Again jogging bangs the joints and your spinal column and could again be the instigating factor! I personally think fast walking is much easier on the joints, all of the joints and is quite effective with less joint stress! If you determine it is your back or knees where the problem is originating and you still want to exercise aggressively, you may have to switch to swimming in the right way which will be much much easier on the knees and all joints in general! With swimming you can go at it hard with much less stress on your joints!
Two, your dose of B-1 may still not be exact, but your symptoms and pull test would have likely let you know that already. No matter what, stay in touch with Dr. Costantini, because you already are well aware of the potential of B-1 for yourself!
You can also try applying your mag oil to your lower back, hips and legs before you go for your walk to help the muscles to relax and ease pain,
I will try the mag oil the next few times I go out. I will be sending a report to Dr C in a couple of days. My biggest concern is that I sometimes feel like my knees will not support me when I go out to exercise. I feel like something is sapping my energy and strength in my legs especially from the knees down.
Don't forget about icing your lower back and or one knee for a few days to eliminate or confirm that possibility. As long as there is inflammation, regular exercise will exacerbate the problem. Icing is a very potent anti inflammatory!
Will do. .there is no swelling in my knees, just the ache. .am wondering if I am getting to much B1. .hope to find out something this weekend when I write him.
I am facing the same problem- I am also on B1 protocol - interested to be updated about Dr. C's advice - kindly share as and when received
Hi any update from Dr.C how are you doing otherwise - how the legs behaving
Just got an email from Dr C this morning. He has increased my dosage to 100ML three times per week. I walked yesterday and still have the same weakness/ache in my knees but I'm not starting the new protocol until Monday so will need a couple of weeks to see any effect. I'm hoping it also improves my tight hamstrings problem.
I am dx 3 years and am on Madopar 187.5mg x 3 per day - main symptoms are slight tremor and rigidity in feet/legs/lower back.
I started B1 Protocol at 500mg per day and increased to 1000mg per day (in 2 doses) after a week. First sign of problems was that one of my knees became very painful and really could not walk with it .
Stopped B1 for a few days until pain was gone and restarted at 500mg per day.Again I increased to 1000mg per day after a week. This led to serious pains in my back and legs (could hardly bend over and walking was very difficult).
Again I ceased for a week and restarted at 250mg. After a week the pain returned - particularly in my back - so I stopped again.
I am not medically qualified but the dosage of B1 seemed to be aggravating my main symptoms (legs/feet/lower back) - so it is doing something but in a negative way.
Dr C says it is very unusual (one other similar patient) but has advised me to restart after a week on 50mg per day - I am assuming that we are going to increase very gradually (if we do increase)
Just saying that this is my experience and as I am no other supplements I am attributing the worsening of my symptoms to B1 (of course I could be wrong)
Also, I am not saying it is your problem but it is worth considering.
In my case apparent knee pain turned out to be the insertions of one of the quadriceps muscles. Pain was around the edges of the knee, and palpating various places in my thigh revealed sore muscles.
In my opinion Mucuna pruriens is just wasting of time.In the absence of carbidopa ,no Levodopa can cross the BBB.Dr Costantini is hugely against the Mucuna Pruriens and I think he is right.In Dr Costantini’s protocol there should be a right balance between Thiamine and L-dopa(a pharmaceutical grade of course). Please contact him for a right advice.
Thanks for your reply. . food for thought. I have been on the protocol since the end of June and Dr C has never mentioned stopping any of the supplements on the list I provided him when we started. . I'll mention it again when I write him this weekend.
Kia, many members of this forum have successfully substituted synthetic meds with MP. Whole bean powder contains substances that ACT as carbidopa, plus the addition of ECGC green tea extract capsules also act as carbidopa as well as Vitamin C. MP whole bean powder is identical to Sinemet without the nasty side effects. It's challenging though to find the right dose.
Despe, The problem with MP is that non of those whole bean powders have the same strength and because of that and like you said the dosage is hard to find. Technically people are either overdosing themselves with (MP) dopamin in peripheral blood because of the dopamine decarboxylase OR taking less where has no effect at all. Even if they find the right dosage the peripheral dopamine decarboxylase will break them all to Dopamine. Too much Dopamine in peripheral vascular system has several side effects including:
Shortness of breath
Serious side effects of Dopamine include:
Heart arrhythmias that can be life-threatening
Gangrene of digits at the higher doses
Dopamine may cause cardiac conduction abnormalities (e.g., ventricular arrhythmia, atrial fibrillation, widened QRS complex, ectopic heartbeats), tachycardia, angina, palpitation, bradycardia, vasoconstriction, hypotension, hypertension, dyspnea, azotemia, piloerection.
Thanks, Kia. I'm basically referring to extracts with specific percentage of L-dopa. My husband is on MP, and, nock on wood, he hasn't experienced any side effects. Coincidently, he had ablation for heart arrhythmias long before his diagnosis. Don't know what we will do in the future, but he doesn't want any pharmaceuticals.
Hope some members of this forum who use MP will share their experiences although they have repeatedly in the past.
In my humble opinion,MP is a good source of boosting energy with aphrodisiac effects for a healthy individual that doesn’t need to take it as a substitute to the Dopamine in central nervous system, but for us ,the PwPD, that “60% to 80% of Dopamine producing neurons are lost “ canot be a substitute to Sinemet or alike.
MP works well for me. It stops my tremor almost completely. It has been used for many years in many countries to help many ailments. I don't believe you are correct in saying you need carbidopa for MP to cross the blood brain barrier. Where does Dr. C say he is against Mucuna?
Thanks for this. Glad to hear that MP works for you. I personally asked Dr Costantini in his office and he was strongly against MP .
I also on B1- i now have a feeling that my lower legs will give way too. Trouble locking hip and knee joint when start to walk. Dr C has recommended i add siminet to my B1.
for me bicycle best for knee pain
both stationary and road
better than jogging
I like fast-walking for my exercising. While finding my best B1 dosage with Dr C's help, I started noticing something similar. It mostly went away as soon as I found my best dose. When I was still "overdosing" with B1, I felt very jittery and anxious, as if I were in a "fight or flight" situation. My breaths were short and shallow. Fight or flight causes oxygenated blood to be sent to muscles and the heart first, brain later.
I believe that when I (who already have difficulty with gait and correct movements and form) get less oxygen to the brain, I have additional gait and movement problems. In other words, my form was off more than usual and I was injuring myself more often. So I think overdosing on B1 indirectly caused me to damage myself a little more, but I think B1 actually helps improve my breathing and form now that I have the dose right.
Even now, though, if I fail to take in enough oxygen during my walks, I get more small joint aches, tiny sprains, etc. But they go away fairly quickly if I make sure I take deep regular breaths to take in enough oxygen. If I fall back into flight mode (which happens less and less) I just stop walking and do some qigong movements and take deep breaths. Then I can go on.
I have been dx'ed for three years, azilect only, and started 4mg b1 then down to 2mg, and now taking a break from it. I fast walk every other day for 2 and a half miles and recently a mile into my walk I noticed I am landing on the side of my foot which was uncomfortable going fast. I stopped the b1. We'll see if that makes a difference, but it is suspicious. I am also not taking dopamine. I wonder if you don't have excess dopa the b1 is causing imbalances.
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