Was diagnosed with PD a little over 2 yrs. ago after having gone through a double fusion cervical operation. Faced with this challenge just after having retired, I was willing to make the best of it. Did boxing, physical therapies, exercise in fitness club. Then suddenly in last few months everything went downhill. UTIs became frequent, orthostatic bp unbearable, left foot dystonia unbearable even more, Achilles tendon tear (which may be result of Cipro for UTI),lack of sleep due to urinary issues. Feeling totally disoriented , and out of touch with reality. The autonomic dysfunction has just taken my personality , and I feel I may never get back to some normalcy. Cardio and neuro don't seem to have answers for any of the issues. Entire year of botox did nothing for dystonia. Meds for orhostatic bp have ended me in ER. C/L has hardly any effect . what could have caused this severe change?
What Happened?: Was diagnosed with PD a... - Cure Parkinson's
What Happened?
It could've been the Cipro. Many people experience serious side effects to the class of fluoroquinolone antibiotics.
I suggest you try Allithiamine and Magnesium L-Threonate for a few months to see some mitigation. Adding in a methyl B complex such as Pure Encapsulations B Complex Plus is also a good idea.
Check out a few of the below relevant articles. Many more under the site.
hormonesmatter.com/fluoroqu...
hormonesmatter.com/fluoroqu...
hormonesmatter.com/fluoroqu...
Thank you, rescuema. I have read many articles like these, and approached several of my doctors regarding Cipro. Of course, they admit of the possibility, but claim more than likely not the reason. I highly believe it is the cause of most of my issues, and will look into your suggestions. Very concerned the damage may be done,
I believe it will help. I've been "floxed" myself and it is no joke.
I suggest that you remove as much of the refined carbs and sugar as possible from your diet as well.
Given how serious your situation is, I'd also try adding TMG to help methylation.
Please see the following post for additional suggestions and support nutrients discussions.
healthunlocked.com/parkinso...
What is TMG
Trimethylglycine or Betaine Anhydrous
did C/L ever work for you?
Not too great. Take 7.5 25/100 C/L each day. Helps tremor, increases dystonia. Can't say it's the best.
that is unusual for PD. I have had it for 10 yrs, 49 now, and all I take is C/L about every 2-3 hrs to keep a consistent level in my bloodstream. I also had a horrible experience with both Cipro & Bactrim, there are many cases of neurological issues from taking them. I would also wonder if you have spinal cord issues. Some of what you are describing sounds a lot like myelopathy from cord compression. Drs some times are lazy thinking everything bad MUST be PD versus separating the symptoms. It is highly unusual to have sudden PD symptoms develop.
I would ask your doctor again about the antibiotic. The side effects from Bactrim, an antibiotic I was on, ended up effecting my liver. I felt flu like & I would
shake all over, had no energy, but at times I would feel pretty good. When the white of my eyes started to turn yellow, I knew something was up so I went to the doctor. They determined I had a reaction to the antibiotic. One of those side effects that are "Rare". Also, before I went to the doctor's office, I went to the Immediate Care Center & they thought I had a flu so they gave me another antibiotic. The doctor took me off both and it took awhile but I started feeling better. So it could be something similar?
Anesthetic injury to hypothalamus is what I would investigate.
I've actually considered something like this would be possible. My operation went from 2 hrs. to 5.5 hrs. No answer was ever clear why I was under for so long, but all I feel my life changed from that day forward. Thank you for your reply.
It happened to me, there is evidence I went into cardiac arrest from being given succinylcholine, now in heart failure. Was given levaquin for an unconfirmed uti, that was negative. Got a torn rotator cuff and nerve damage from the automatic blood pressure cuff during the incident - they said I "bucked" coming out of anesthesia. I call B.S. I no longer trust doctors.
SE
I really feel for you. I had some similar symptoms happen to me last year. I thought that it was going to be my new normal. Finally, after trying many things, I was put on Flecainide. This controlled the orthostatic hypotension but the rest like the UTI’s also went away? I am not a doctor but I wanted to give you some hope. I truly hope you feel better soon.
Thank you. I will talk to my neuro about the med. Had just received a message from him on whether I was ready to move to a new Orthostatic BP . Had tried midodrine, ended up in ER. BP skyrocketed.
To those suffering with severe autonomic dysfunction (me included) it's a result of damage to the hypothalamus. A cardiologist I found is an expert (treated his own) Dr. DePace in New Jersey - he has videos.
franklincardiovascular.com/...
He is on my list to call, as I have seen his website, and I am in Jersey as well, Have you visited him?
I haven't seen Dr. DePace, I'm in Minnesota. Travel isn't an option for me now. Maybe telemedicine is available 
Hi, i can't suggest what you do, but i can only give my experience.
I was on pramipexole, thihexiphynidil, Sinimet, Mucuna. And had dystonia consistently and terrible offs where all i could do is sit around and shuffle to the bathroom when necessary.
Then i decided to wean off of all meds, with a view to taking a drug break for a week or two, and starting over with the meds that i know worked best for me.
In a nut shell, i concluded that i was way over medicated. My off-drug period resulted in the lightest symptoms i had in years. Just adding more meds and higher doses as things progressed over the years, apparently has incrementally resulted in worse symptoms.
While this is my experience, i share only as food for thought. I am not the only one on this forum that has experienced something similar when weaning off of all meds for unrelated medical or other purposes.
Just sharing, regards.
Cary
Ironically, i just started experimenting with a reduction this a.m. Hoping it helps bringing some clarity in my head. And reduces dystonia in foot. I, too, am tired of shuffling to bathroom, and not much else. Thank you.
I do suggest that you do this under medical supervision.
To add, i think that key to my situation was a complete withdrawal from all. If you are experiencing significant symptoms despite taking numerous or high doses of meds, then it COULD be that like me, less may be more.
When i eventually restarted my meds i went from 4 Sinemet 25/100mg a day to 1/2 X twice a day, and 2.5g of Mucuna X 4 times per day to 0.5g X 4 times. Several months later and i am now thinking of reducing further. My experience may be atypical, but i can't help but think that others who have been religiously taking their meds, for fear of worsen symptoms may be in my situation of overly high doses and may never realize it.
Cary
Oh one more thing, every morning i awoke to foot dystonia.....every morning until i took my meds and 45mins later it would go away.
Now, i can't remember the last time i got a foot dystonia. I think I got it twice since i stopped completely and restarted on reduced meds months ago.
Cary
Barnwell I think Hillview makes sense.
So many people overdose by treating drug side effects with more tablets. It is very easy to do as overdose symptoms are very similar to disease symptoms. I can tell the difference now but it took me ages and I still misjudge. Your description of shuffling into the bathroom and not much else sounds very familiar.
Personally I would stop focussing on cause and instead focus on getting the meds right so stopping all supplements and adding one at a time later if you so wish. Your c /l load is quite high for 2 yrs post diagnosis though not too bad.
I would also be very wary of drugs for orthostatic hypotension. (Has this decline happened since commencing them) You ended up in ER but you are still on them I think. Better to reduce c/l meds which are making it worse.
I do wonder about your cervical surgery. Was your problem maybe an unrecognised PD symptom?
You’ve probably wiped out your good gut bacteria too. Try eating some fermented foods each day, plenty of greens and other veges and stop sugar, seed oils like soy and canola and possibly try eliminating gluten and dairy.
If reducing med you could try what my husband has done. Buy a jewellers scale and some empty gel caps and each week cut a bit off the tablet or open the capsules and remove some of the powder just say 10% per week. Check though that they are able to be cut as some have coatings to stop them dissolving too far up the digestive system. Keep the bit you cut off in a new gel cap and label and you may eventually get down to that small amount. He has done this very successfully with mirtazapine and sertraline.
barnwill,
If the UTI's are still a problem, unfortunately, the highly potent antibiotics you were given can also further deplete good gut bacteria that can help to control UTI's in the first place. Add to that the fact that a perturbed gut biome is common in PWP and you then have a good scenario for repetitive UTI's which is likely to raise your total inflammatory load and significantly lessen your total antioxidant capacity, two things that have the potential to worsen your PD symptoms.
Replacing good bacteria with fermented foods and probiotics + prebiotics may be useful in trying to restore good gut bacteria and lessen the chances for repeat UTI's.
If the offending bacteria that is causing the UTI is E.coli, it may be useful to discuss with your doctor the use of the supplement, D Mannose, the active component from cranberry juice that has shown itself to be very helpful in ameliorating E.coli caused UTI's and is much more potent than pure cranberry juice. D mannose does not have the serious side effects associated with highly potent antibiotics and because of its method of action, the e. coli bacteria does not become resistant to it as it can with antibiotics. D mannose works by binding to the bacteria, preventing the bacteria from attaching to the walls of the urinary tract and bladder. This allows the bacteria to be harmlessly flushed away when voiding, preventing the infection from getting started.
europeanreview.org/article/...
ncbi.nlm.nih.gov/pubmed/290...
ncbi.nlm.nih.gov/pubmed/236...
There are specific probiotic bacteria that have shown the potential to help prevent UTI's.
ncbi.nlm.nih.gov/pubmed/168...
ncbi.nlm.nih.gov/pubmed/290...
ncbi.nlm.nih.gov/pubmed/296...
Getting the UTI's fully controlled can go a long way toward improving your overall health, reducing your total inflammatory burden while increasing your total antioxidant capacity which ultimately may have a positive impact on your PD symptoms, but getting them taken care of is important.
Please discuss these options with your doctor to be sure they will be safe for you in your specific situation and will be compatible with all medications you are currently taking!
Art
I have one simple recommendation based solely on my success treating dystonia in my right foot: when cramps occur, I spray and rub in magnesium topical spray and in a few seconds, the toes uncurl and discomfort completely vanishes. I bought the spray NOW brand and it was inexpensive $6.00? and readily available through Amazon. I have used it up to five times a day if having unusually more cramps. It is temporary relief, but I find using the spray and doing stretches will often produce good results. That and yoga, meditation, exercise and greatly reducing the amount of meat I eat has worked pretty well.
Does listening to music help you I wonder.
Best of luck to you.
Jennifer Dunstan
Thank you, jenniferdunstan. I have tried magnesium spray. Maybe I should stick with it. Actually, have tried most of your suggestions , except yoga. Seems I'm going through some testing times. BP all over the place, Achilles pain unbearable, the covid19 scare. Meds not working. Too overwhelming for fragile mind.
You have my deepest sympathy. There may yet be some relief coming your way. My husband had success with low level laser therapy at his chiropractor's office. Using crutches , would help too I would think. Sorry that these ideas may be old news... Would Botox injections help? I will start Botox myself for dystonia in my right foot when the crisis is behind us. Neurontin (gabapentin)? good for nerve pain but yr dr could advise about possible side effects. Stay strong! Best wishes.
Did entire year of botox. No improvement. Seems like I'm one of those cases that nothing seems to work. Thank you for your support.
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