I have recently had an appointment with my neurologist and, as expected, he told me basically that the only way to achieve a reasonable quality of life into the future is to have DBS surgery. He spoke of the risks, that not everyone is suitable etc etc. And that was it.
DBS or continue to steadily decline as the condition progresses and the side effects of levodopa even compounds the problems you are asking it to deal with!
I have seen this time coming for a while now and carried out a good deal of research. My main medication has been Sinemet for five years now and, after this comparatively ok'ish spell, I am experiencing the troubling side effects of the levodopa. Though it has helped my tremor on a daily basis, in the long term levodopa has made it very much worse and now I wake in the middle of every night shaking and needing to medicate and wait for the drugs to kick in before eventually resuming sleep. If I take more of this med at bed-time I have very broken sleep and invariably weird nightmares. The levodopa has also been the culprit for my foot dystonia-my pd was predominantly left sided but now my right middle toes are numb and 'claw-like' and my right foot turns in even when I think I'm medicated enough. Walking is then impossible until I have waited for more dopamine to rescue me.
My meds daily have been for a while: Sinemet Plus 750mg CR 200mg, Amantadine 3x100mg, Zelapar 1.25 mg. I am not allowed dopamine agonists due to horrendous side effects of dopamine agonists. I was dx about twelve years ago.
So this is the background to me starting LDN. The pd meds have enabled me to function in some way for many years but they have and now continue to lead to further disabling and troublesome symptoms..
Will LDN help? I don't know but I'll keep you posted.
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batwing7
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Hello Batwing - I have seen your question and am also waiting for informed replies to flood in about the successes or failures of the LDN treatment. Im surprised that some of our learned colleagues have not replied yet. Annh first of all sparked my interest about LDN and no doubt you have read all the information posted. The aim is to halt or slow the progression of PD - in my case I feel I have to do something (3yrs since diagnosed) and its taken me this long to find out that some other forms of treatment exist - I'm new to having ill health and felt that a cure was coming soon so no need to worry to much, use the drugs in the meantime and I'll be right - dont we call this living in a fools paradise. So plan A - keep reducing and manage stress, reduce iron levels (my ferratin levels were high) reduce exposure to heavy metals and reduce exposure to chemicals and toxins. I dont think it is possible to eliminate all known triggers unless you live in a cacoon. Along with this I want to start taking a low dose of cortisone in a form that will help reduce any possible inflammation that may have occurred in the affected part of my Brain. LDN may then be the icing on the cake. Hopefully some responses from people who have tried or are trialling LDN will appear soon. Nothing ventured - nothing gained. Good luck
I'm on LDN and I think it works because I can sleep at night with no troubles..no cramps, no weird dreams, and I wake up refreshed. But as the day goes on when I take my meds it becomes typical PD. Tremors, ridgitity , etc. I take Requip xl 8 mg, sinemet 25/100 3x, Azilect. If I try to go off the meds . I get worse so I really don't known if is an a good therapy for PD. someone told me on a blog that everyone is different when it comes to LDN working, that it may work for someone after taking 1 month or another person taking after 1 yr and then it works.. It not expensive but it wouldn't hurt to try. I looking into a different therapy called "Microdose therapy" h. Here is the info.
Microdose Therapy by the Helen Foundation teaches patient self-administration of hydrocortisone to treat cortisone-responsive chronic pain conditions. This method results in dramatic relief from symptoms and virtually eliminates side effects. We have successfully treated chronic pain for more than 10 years and have done so with phenomenal results, without the use of narcotic medications.
Conditions in which corticosteroid use are indicated include: endocrine and rheumatic disorders, collagen and dermatologic diseases, allergic states, ophthalmic diseases, respiratory diseases, hematologic and neoplastic diseases, edematous states, gastrointestinal diseases, to name a few. The “Dosage and Administration” used for patient self-administration of hydrocortisone is within the scope of accepted use described in the PDR and supported in peer-reviewed published medical literature.
Microdose Therapy teaches patients to quantify their symptoms daily using a simple, comprehensive system that assists in precise treatment decision making and tracking of symptom response.
We trust you will find this sample of statistics using our protocol impressive:
Disease Patients Average Relief, %
Fibromyalgia 530 77
Osteoarthritis 516 78
Rheumatoid Arthritis 225 77
Arthritis, undifferentiated 143 75
Polymyalgia Rheumatica 31 79
Chronic Fatigue Syndrome 23 56
Parkinson’s disease 22 85
Irritable bowel syndrome 20 70
Multiple sclerosis 13 70
Physicians and patients alike are often frustrated with the inadequacy of common treatment options available for these conditions and other chronic debilitating conditions. The Helen Foundation recommends that you try patient self-administration of hydrocortisone for your most difficult cases.
We provide the protocol and treatment instructions. We work with the physician and patient, carefully track their response to therapy and give the recommended dosages individualized for each. In addition, we perform the time-consuming, one-year patient education.
The first three weeks of the program is dedicated to reducing patient symptoms to a minimum state. During this time, the patient is to take hydrocortisone tablets daily in tapered dosages while avoiding ingesting foods identified to be allergenic by a blood allergy test. A repeat three-week induction period with a tetracycline antibiotic (usually doxycycline) might be necessary in a few cases wherein the response is sluggish. This family of antibiotics has been helpful in controlling rheumatic disorders (Endresen, 2003; Kloppenburg, 1993; Tilley, 1992). Food allergies have been proven to contribute to the pain of rheumatic disorders (Panush, 1986).
As a consequence of the induction period, one of six patients will lose most or all symptoms within one week, four of six will do so in three to six weeks and the remainder, one of six, will not respond and must be discontinued. A satisfactory minimum symptom state is 75+% symptom reduction from baseline. The Helen Foundation Clinic will recommend the hydrocortisone dosages for you that are customized to patient parameters based upon its data bank of patient histories.
The next three months is dedicated to teaching the patient to self administer a customized dosage, five-day hydrocortisone regimen to quench reoccurring fibromyalgia flares and test the foods determined by the laboratory to be allergenic. The patient will be educated weekly by the Helen Foundation Clinic education staff in a classroom setting if local to the Helen Foundation Clinic, or by telephone, email and mail if at a remote location. Each patient will receive a copy of the Patient Education Manual. You will also receive a copy of the Physician Manual. Your patient will require a prescription for four five-day hydrocortisone regimens per month. They will average 3.3 fibromyalgia flares per month (Stenberg, 1992). The Helen Foundation education staff will educate the patient but not give medical advice. Medical issues are referred to you.
The final nine months of the patient education program consists of regular monthly sessions with the Helen Foundation education staff. At anytime, a patient being educated may telephone in to the education staff for advice via a toll-free line.
Low Dose Naltrexone---I have taken LDN for about 5 months and I do believe it is of some benefit at this juncture. I have researched LDN and am convinced that it " MIGHT" offer some help in slowing down P D and even reverse some symptoms. I know personally of at least 6 people with P D who have benefited from LDN to varying degrees. It has worked magic in some instances and there is a great website (LDN.ORG) that contains a wealth of info as well. I also subscribe to a LDN newsletter which is very informative. If you try LDN be patient because it might take a couple of years to be of benefit. One caveat---you need to be certain of the ability of a compounding pharmacy to prepare the doseage
I have my prescription filled at Skip's Pharmacy in Boca Raton , Fla. Skip is a recognized authority on LDN and his compounding pharmacy is very dependable. Good luck!!!!!!
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Anyone else not helped by dopamine agonists?
Dopamine agonists or levodopa?
Any other PD people out there...your major PD symptom is toes curling up on both feet 
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