recently treated for lymes disease massiv... - Cure Parkinson's

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recently treated for lymes disease massive improvements

Todd-pw profile image
17 Replies

hi a quick update for anyone who comes across this post, i was treated for lymes as i got severely sick my neurologist didn't have a clue what was going on he just kept changing and altering my PD meds which just made things worse. so i went to Breakspear medical group in Hemel Hempstead uk and was treated for a month on intravenous antibiotic then did about a month on oral antibiotic and supplements as advised by Breakspear.I am now 80% better than when I started the lymes protocol i still take my PD meds but most of the worst symptoms i had have gone.

My nuero and GP basically advised against getting the treatment and i stupidly listened until things got that bad i had to giver it a shot.

before lymes protocol.

i couldnt eat without feeling like i was going to die about 30 mins later

constantly drained of energy

couldnt walk more than 2m or 3m basically crawled around my house.

some days struggled to open my eyes

felt sick and weak with brainfog every day, felt almost like i was going to die.

all PD symptoms just seemed 100x worse

plus many more symptoms basically effected every function.

After lymes protocol

digestion back to normal dont feel unwell after meals

energy levels back to almost normal

taking far less medication for PD

can walk even when my PD medication has worn off (slower but still mobile)

All PD symptoms have eased massively

even finding the energy to workout every day now

feel like i have got my life back.

hope this helps anyone who is suffering with a lymes and PD diagnosis.

My neuro has also changed my diagnosis on my letters to suspected parkinsonism with previous positive lymes diagnosis, which is ironic as he didnt think i had lymes and stated PD diagnosis on all letters previous to my private treatment.

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17 Replies
Redginger profile image
Redginger

Thank you so much for sharing these details with us. I'm glad you got the treatment and are not feeling like you can live again! We know my husband had Lyme disease but the treatments were not helping significantly.

NRyan profile image
NRyan

PD symptoms can be brought on by Lyme's disease. It may be you don't have PD....which is great news! Lyme's disease should have been ruled out at the start. I asked Dr. Mischley about this for me, but my PD was confirmed by dog sniffing test. My hopes were dashed. I'm so happy for you! Focus on healing now.

Todd-pw profile image
Todd-pw in reply toNRyan

Hi I still seem to struggle without the PD medication. if you don’t mind me asking what is the dog sniffing test?

NRyan profile image
NRyan in reply toTodd-pw

Joy Milne can smell PD. As a result of the discovery that PD has a smell....Dr. Mischley trained her two truffle sniffing dogs to smell PD. You send her a Q-tip with your ear wax on it, and she has her two dogs smell it to confirm/deny PD. She tested mine 4 times just to be sure. If you are not a patient of Dr. Mischley, I would certainly have a consult with her to get down to what is Lyme-induced and if PD is present or not. You do not have to continue to see her, she will do a consult. I see her one time a year via Skype.

MarionP profile image
MarionP in reply toNRyan

That is cool...if it's true. Ask her how did she accomplish her validation with the dogs, and what's her false-positive and false-negative error rates with them, and if she has proof. Because if it was true, she could make many millions off of it, so she would be the first one of course to want to have it independently and scientifically validated, and for something like this it would be very very cheap to accomplish, and even some science shops would even pay for it too. So...

lenamm profile image
lenamm in reply toMarionP

From what Laurie told me the dogs will mark anyone with PD but will sometimes mark someone without it. So there are false positives (who knows if they will develop PD someday) but there seems to not be false negatives. My friend who would go to my appointments got marked although she does not have PD. I got marked but was always last in the room if there were others with PD - does that mean I have less PD? Who knows! Interestingly enough by boyfriend can smell PD on me but says I no longer smell of it after PTT surgery #2. I still bet Laurie's dogs would mark me but don't know for sure.

MarionP profile image
MarionP in reply tolenamm

I'd quickly convene a boatload of scientists, by contacting a boatload of media journalists, about your boyfriend. !!! In fact I'd bet Inside Edition would take you right to the front of the line; Deborah Norville you know. And she's on CBS Network compensation committee so you know she'd do the contacts after she got first dibs on the scoop. Then because of that, competitive Oprah would be right behind wanting their shot, and as much as this would definitely be enough to get on Dr. Oz and The Doctors, they also are really competitive with each other and try to one-up each other's stories. Would make for really good footage dragging him around smelling people with a blindfold. See, then if it works out for marketing then 60 Minutes will come knocking...and that will get MJFF all interested. All started by just dropping a line to Inside Edition in New York.

But first you want to marry him drag him to Calif. it's a community property state) and not let him get away with any sort of a pre-nup. If he's a little demented by now that's even better, just guide his pen-hand to the signature line, tell him he's sending a letter to his niece or something.

lenamm profile image
lenamm in reply toMarionP

Haha!

NRyan profile image
NRyan in reply toMarionP

There are dogs being trained right now to sniff out PD. They are waiting for FDA approval or something of that sort. Dr. Mischley already had dogs she trained for truffles, so she simply trained them to sniff out the particular PD smell. She is not interested in marketing it. She does this for her patients for free. She did say there may be false positives, which is why she did mine 4 times. Anyway, its a free option to see if the dogs can sniff out PD in you. It may help determine Lyme or PD or both.

pdpatient profile image
pdpatient in reply toMarionP

@Marionp. You are spot on. I still have high regard for Dr. Mischley, but anecdotal stories like these makes me think that I have to agree with my wife who strongly believes that the good “Doctor” is a quack:😂😂😂😂

rescuema profile image
rescuema in reply toMarionP

Joy Milne seems legit and I find her fascinating. It's because of her that some dogs could now be trained with the compounds she helped to isolate, but dog identification isn't as accurate and supposedly tough to train reliably. She could not only identify PWP with 100% accuracy, but she is also able to identify those who're about to be diagnosed with PD. She could also tell the difference between Alzheimer's, cancer, vs PD, etc.

npr.org/transcripts/817977005

bbc.com/news/uk-scotland-47...

parkinsonsnewstoday.com/201...

Todd-pw profile image
Todd-pw in reply toNRyan

Hi thank you so much for your informative replies please could you send contact details for Dr.Mischley

NRyan profile image
NRyan in reply toTodd-pw

(206) 525-8012

MarionP profile image
MarionP

Tell your neuro it is possible to have more than one condition concurrently and to correct your official diagnosis accordingly. Tell your GP the same thing. Important to tell them this and ask them to respond appropriately, since they are creating a record...mention that you're sure they wouldn't want to become responsible for a lengthy "bait and switch" cycle, they took an oath to do no harm, and that includes inadvertently from too-narrow mindset, especially if they get hit by a bus some day and someone else has to rely on their notes as gospel. Tell them just that way.

condor39 profile image
condor39 in reply toMarionP

Threatening your physicians does not seem a very good way to have working partnership.. “You had better be right or else”“You took an oath to do no harm, and that includes a too-narrow mindset, if you get hit by a bus...”

If you feel this a good way to start a cooperative relationship, you really should get another physician, one you can respect and trust.

MarionP profile image
MarionP in reply tocondor39

Not a threat, you added that wrong interpretation all on your own inappropriate reading between the lines instead of sticking to the words. I come from a large family of physicians and they very much appreciate reminders as busy as they are, (my brother once even said it helps to keep his professional liability rates down) and "bait and switch" is a little game they play as internes and residents to test each other's diagnosing acumen, and it's their own name for the game.

Of course, if I did feel that my physician was too sensitive to allow patients to say what's on their mind, then I definitely would take that as a flag signal.

rescuema profile image
rescuema

Additional possibility -

Enterococcus faecalis along with other TMAO synthesizing GM bacteria could also be affected by the Lyme antibiotics treatment, improving the PD symptoms.

researchgate.net/publicatio...

directorsblog.nih.gov/2019/...

pnas.org/content/117/17/9135

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