I am writing this on behlf of member 'dwegan', who is not well enough for something like at the moment. My name is Sigrid Egan.
Before I came upon this site, I planned to find a place to write about experience with the Corona Virus infection, that hit both ,y husband I about 4 + weeks ago.
We didn't know for another 2 weeks what had hit us. We had symptoms but nothing described by the health professionals, CDC or the daily briefing of guru, Dr. Fauci.
We live in the Arizona desert town and just thought, going to the mountains for the summer months would fix it all. Well we apent a week at 7000 ft but were not well all this time and returned to our home after one week.
I started this whole thing with panic attacks for no explainable reason, no fever, no cough, just enormous uneasiness. My husband, who has had PD for 10 years and is not eating well, just stopped eating pretty much alltogether.
So we returned home and I went immediately to my family doctor for blood, urine the usual And requested a covid test. It came back after 3 days as positive. That meant, my husband was infected surely. He was taken tomthe ER a few mirnings later be ause he was so weak, he asked for it. After a day and a night, he was discharged back home and had been intravenously fed.
We got sicker and sick..er. I have also COPD and am used to being short of breath.
What I went through in the following 2 weeks, I wish on nobody. Waves of sensations starting in the back of my head, working its way thru my body grabbing my lungs. It felt like dying slowly.
Here is where I want to appeal to the medical society, especially, in Scottsdale, AZ, that my team of doctors were totally detached from my infection.
I would call daily asking for help, asking for the doctor to talk to me , but I could only leave messages and received messages. It was always negative.
At a minimum, my doc should have prescribed an oximeter, that I finally borrowed from a friend. That friend, lucky for me, had gone through covid with very similar symptoms. She remains my only source of info.
Then, my Pulmonologist or her office were absolutely useless. A telemedicine appt. should have taken place about 2 hrs or so late, when I did not expect it anymore. I missed the call and was told by this stupid receptionist, that I now need to wait another two weeks. I begged to at least have the doc call me, so I could asked my question about side effects from Spiriva.
I am very inclined to make formal complaint to the Maricopa Medical Board.This treatment I received has to unethical, at the very least non-compassionate. That is NOT what we need from our doctors.
I have no place to go, I need to speak at least to a lung doctor, because I have breathing problems, but during this pandemic, where can I go. The ER seems to be the preferred place to get rid of ones patient. Abominable, to put it mildly.
We have never felt sooooo alone during in illness and we are both 80 ! generally, in good health. I have been through operations, very serious ones, this here tops it.
Shame on all doctor offices and especially their staff, who need training desperately.
I very much welcome comments to " The lonliest disease of all, Covid19"
So sorry you and your husband are having to go through this. Thank you for sharing this account - I suspected covid-19 to be especially hard on the people with Parkinson's and now you have provided evidence.
A supplement that you can take that has been shown to be helpful in COPD and is likely to be a helpful with Coronavirus is N-acetylcysteine, commonly abbreviated as NAC.
See my writing here:
NAC May Reduce the Severity of Coronavirus Respiratory Illness
Thank you! I am big on vitamins and minerals and yes, we did take high doses of Vitamins C and Zinc and Melatonin and Theanine at night for sleeping. Hm, interesting Ozone therapy.... Thanks very much. I think today is the best day, we have had in 3 weeks, hopefully, that doesn't turn. A friend, who battled the Virus with similar symptoms said "it is one day forward and 2 days back". We experienced that already, but to lesser degree.
You are very welcome and best wishes for a speedy recovery. If there are any doctors who use ozone therapy, please make an appointment and talk to him/her. You can also find a lot of information on the web, even this site.
The main conclusion you should draw from that paper is that its intended audience was skilled medical professionals, and it emphasised the need to monitor and adapt therapy to complex dynamic medical situations.
In short - no there isnt a wonder pill recommended by that paper, and simply using some of the therapies, in the wrong context could kill instead of cure
I understand and agree that in a perfect world medical professionals should be directing the treatment of the condition. That, as in this case, is not always possible. However, my wording was probably bad but I was looking more for a supplement of supplements that can help pre infection and as a last resort in higher doses as post infection recovery. I am already taking NAC, quercetin, melatonin, zinc, vitamin C, fish oil, and Licorice root.
I think the main lesson from this case is the best course of action is to take all reasonable steps to avoid infection, rather than look for ways of treating the infection. No supplements will provide a better outcome than that. The fact that the paper posted by ParkBear mentioned supplements, doesn't change the fact that it was in a different context for different stages of the disease, and within a stage different underlying medical conditions. There was no "one size fits all". Sometimes things in life are complicated however much we'd like them to be simple
Superb information, thank you. Ties up with both Micki Rose ( purehealthclinic.co.uk/2020... and Dr Seheult on MedCram. I am already using Vit C, D, E, Quercetin, Zinc, Glutathione and a NAC substitute, but will be getting some NAC. Looks like the Gluathione was a wise choice (have the quoted genetic absence). Best wishes to all
Doctors are also in business to make money, which probably wasn't too great in these Corona times. There is only 'ONE' person allowed in my doc's office and the specialists work with telemedicine. We are both on Medicare Plus, not any supplement. I am sure, we'd had better success with a plan and supplement. We won't get caught anymore with something like and will definitely use a different plan next year.
According to one M.D. who studies medical billing, most doctors use a service to collect from insurance companies and do not know how much they are getting paid by different patients.
Also, I am aware of horror stories of private Medicare Advantage insurers trying to stiff patients on payment. For that reason I believe regular US government Medicare is the best.
I totally agree and I am also for natural stuff, when I can do that. Don't believe in all this pharmaceutical products. Everything has side effects. We are 80 years old and normally take just a blood pressure medication. We exercise, live a happy life and love to be friends. That's the best recipe for a long life. Grazie mille GioCas en Italia!!! I am a native of Germany and spent every summer up until I moved to the US, in Italy. A beautiful country, that I showed my American husband during the summer of 2000.
NAC is readily available and should have no side effects, vitamin D deficiency could promote the disease. Congratulations on the yours excellent choices in everything.
NAC can affect some people. I use alpha ketoglutaric acid which is
'as a replacement for n-acetyl cysteine (NAC), which may have side effects in a subset of individuals'. Can affect blood clotting amongst other things so be aware. You can also use amino acids and co-factors for glutathione production. Cheers
I agree! What a great site I found. Thank younall for your comments and kind words. Just to add to my report on what this "thing" fwlt like. Yesterday was our best day yet. I was busy most if the day with chores that had neglected. This lasted into the evening when suddenly some of this awful frightening feeling taking charge of my entire body, started. Oh no, I thought. Again, I took over, walked around take my ibuprofin zink and vit C and slowly "it" slowed down and I finally went to sleep. A lot in this disease, I discovered is anxiety, just how my symptoms started in late June and today is August 11.
I hope I can shed light on this for others, who may still contract the birus or are in the middle or end. Fight it! The solution is Not to give and call 911, if "you" can manage your lungs/your breath.
I remember hearing you are supposed to take Tylenol not ibuprofen if you have COVID, that was early on so I’m not sure that’s still the current advice. Also do you have a nebulizer? I have asthma and have found the nebulizer very helpful when I’ve had a lung infection. Glad you’re improving!😊
Your anger is misdirected. Doctors and their staff are overwhelmed. They are also the people who advocated the most for mitigation efforts extreme enough to prevent them being overwhelmed, but that wasn't considered a priority by the people in charge.
Want to complain to someone? Try the governor's office.
It sounds horrendous trying to deal with Covid 19 illness without the help and support of doctors and specialists. I hope you continue to recover and recuperate.
London was hit very badly with Covid and my husband who has PD and I shielded for 5 months.
He also takes NAC, B1 Vit D, C as well as others. .
Our GP was contactable by telephone and responded quickly to any queries we had. There has been criticism here about the handling of the epidemic but our health system is free and was mostly accessible throughout the epidemic.
Although its been mentioned a couple of times, I'm not sure you have picked up on vitamin D deficiency being a possible issue to address. Ideally get tested and supplement if levels are low. But if your medical system cannot offer testing, I would be inclined to supplement anyway for at least 4 weeks. Plenty of good evidence on this one.
Otherwise, be cautious about advice for pet remedies, mostly from people with no direct experience of Covid 19. I have 3 friends who have suffered at least as seriously as you and your husband, and whilst they were 43 59 and 64 - the good news is they have all fully recovered (well superficially at least). And their recoveries were without any supplementary therapy (Brigitte1 - the obese 59 year old was in hospital for 5 days and received antibiotics and anti-inflammatories). But no ozone, etc
And I would repeat the point that most medical professionals are caring decent people, not money-focussed profiteers. Poorly controlled coronavirus which allows infection rates to spiral out of control, places enormous pressure on health care resources, and is exhausting for those working in primary health care. My niece's boyfriend works as a physiotherapist on a Covid ward. He can't suddenly morph into 2,3, even 10 physiotherapists just because that many people get sick with Covid. And by definition, he is not normally a Covid physiotherapist, so he has been diverted away from his normal care activities as a hospital physiotherapists, and that diversion of care becomes part of the uncounted collateral damage from Covid
That's why we all have to try to avoid being infected , and infecting others, by appropriate social distancing, face mask wearing, hand hygiene etc. And its why most governments at some stage, caught on the hop, have used the blunt instrument of lockdown. To buy time, and take pressure off health services which are otherwise over-run.
As I understand it, Arizona has not managed to help its health care services in that way, and so the individuals working in health care, doing their best, are probably under intolerable stress. As well as being in the front line of risking infection themselves if overstretched resources are unable to offer them acceptable levels of protection. Go easy on them. Maybe even acknowledge them and thank them.
Edit: just checked. 187000 cases in Arizona - population 7 million. By contrast the UK has 10 times that number of people , and "only" 311000 cases - and its health care was stretched to bursting at the peak. Small wonder health care professionals in Arizona can't offer the level of service they would like.
IMO the lethality rate that is the death / case ratio is much lower in Arizona (0,02) than in the UK (0,14) which tells us that they are taking better care or doing more tests than in the UK.
Or it tells you they are earlier in the process and deaths are a lagging indicator to new infections. But of course, world wide doctors know more now about how to treat this disease than they did 3 months ago when the UK was at its peak. If nothing else they turn patients onto their fronts.
Edit - look at the last week will give you a better picture of both countries current state of health care (and the UK wasn't and isn't a class leader - but relatively after an appalling start, it has got its act together)
Deaths - UK 365 Arizona 385 (but 1/10th the population so equivalent to 3850)
Cases - UK 6130 Arizona 8456 (equivalent to 84560)
Deaths / case UK 5.95% Arizona 4.55% - and yes that probably reflects both more testing in Arizona and a rising curve in Arizona but a falling curve in the UK (ie deaths lag new cases)
At the moment I evaluate the situations with great caution, for example in Italy out of the 500 new cases per day only about ten are symptomatic and to a slight extent. What does it mean? I do not know. Certainly many things have changed since January.
Just a note re docs: You are right, many doctors have great bed manners and are comforting. I have a few of those. My surgeon after breast cancer is th nicest guy I have ever met. Caring and comforting and his assistent is phenomenal. And there are others. However, these two that we Had to deal with are not recommendable. At 80 years old, I believe I can permit myself to to compare health services, because Imhad a lot. Good luck folks with your ongoing lives. And thanks to all for constructive responses.
people, who may contract the disease, can learn from peoples symptoms ;they are all different with different length of the disease. And no doctors know everything. A lot of them are just learning. The isolation plays a big role in recovery and support from friends is crucial. We were overqhelmed by the response of all of our friends and neighbors. They shopped for us, they brought us meals and checkd every day on our status.
It is in times illness, that one learns, who ones' frinds are.
America is known for hype. I am a native of Germany - I spent my first 38 years there and in other European countries and 42 years here in the US. Everything is always put out of proportion. Yes, this pandemic is terrible. I have not seen personally anything like that other than experiencing the horrors of WWII and growing up in postwar Germany. It does create anxiety, because your life is completely restricted from going out from mingling with friends. I am a peoples' person. Luckily, we have texting to stay in touch and exchange experiences. One thing to the Europeans or British: Don't believe everything that your Media tells you about America! I have zero trust in the media. Too many tabloids and bad journalists among them; that applies to both the US, Britain and the rest of Europe.
I believe it is best to leave politics out of this equation. Every time I read where politics is injected, negativity comes out of it. Like others before me have stated, this is a Parkinson’s forum, not a political one. If someone wishes to respond in a political manner, there will be no response from this writer.
Thank you! That is what I said, maybe not as nicely as you did. But this person 'ChrisWF' is now writing me still to my email. I will go away from this site, if this crap starts here. Facebook is bad enough.
in reply to
1. I am not "writing you to your email". If you have alerts set up from healthunlocked then perhaps you are referring to those emails.
2. YOU brought up politics. I simply said you should contact the office that has control of the statewide response to the virus.
It’s truly a great forum with some really great people providing some great advice. No forum is perfect. I suggest not reading threads you fine upsetting. What I do.
You write I do not want to write on a political site but not before writing yourself that democrates play with our health for the sake of taking over - if thats not politcal I don know what is!!
PS the world knows who plays with Americans health, just seems many Americans have yet to find out
3 of your last 19 posts have been in threads about PD, so perhaps you aren't in a great position to criticise.
I wasn't disrespectful. I informed the poster that her anger was misdirected on the basis that doctors have no control whatsoever on the key decisions that influence how many patients they get. It's been incredibly well documented since at least March that doctors could be overwhelmed in even highly developed nations if extreme measures weren't implemented and maintained. 5 months later and people want to complain to the medical board about the lack of access? Give me a break.
She was the one that got agitated, not me.
And to be honest with you Gio, I find her anti doctor rhetoric offensive. I have relatives working at the COVID coalface and the ONLY thing they care about is patients getting better and having fewer people get the virus. The idea that they are sitting there counting their money whilst people die whilst waiting on the phone is not only offensive, its stupid beyond measurement and is the kind of thing i feel an OBLIGATION to call out as utter utter bollocks.
a nice speech Chriswf but why didn't you do it to her in the first place? I see a difference between her and you, that is, on the first post she wrote "my name is ____", "my problem is ___", but I don't know anything about you after months you write, I asked you if you are a caregiver, a pwps , you didn't answer me. what's your job?
I have read that web page but I can not find any reference inside to the study that you indicate in the post, maybe I'm wrong can you tell me where it says?
This is a phase 2 study designed to assess the safety, tolerability and efficacy of NLY01 in subjects with early untreated Parkinson's disease (PD). Evidence suggests NLY01, a pegylated form of exenatide, may be beneficial in PD and is being developed as a potential treatment for neurodegenerative disorders.
I'm just trying to get an idea on a timeline for a trial at the recruiting of stage II participants until it could potentially make it to market. Not complaining about the process or what is needed to complete the study. The timeline seems important though for patients, because perhaps people who may not be around by the time a product makes it to market would not want to participate if they are aware of the minimum time required assuming there are no hiccups along the way?
Well an incentive for participating in the trial would be getting much earlier access to the drugs. Surely that is an incentive for participating rather than not?
I see. The long term safety of the drug is unknown at this point so that could entail significant risk to the patient couldn't it? If a patient is injured by the drug, does the patient have any recourse at all?
If the remainder of trials go well, will the manufacturer continue to supply the drug to the participants until the drug is actually available to the public or will they have to wait until it is available at the drugstore?
1. There are risks, yes. There are also considerable risks associated with having PD that is progressing. I wouldn't say ultra long term risks should be of great concern to a typical PWP for obvious reasons.
The reason I asked these particular questions is because when I was at the doctor's office in January of this year, a lady who was in the office, asked me if I was interested in joining a trial and she explained the trial to me, but her answers to those specific questions made my decision a no. They would not continue to give me the drug once the trial was completed. I had to sign a waiver to any legal recourse in relation to the trial and she said there was the possibility that the drug may never make it to market. I wasn't comfortable with those answers so I told her no thank you.
You are posting in bad faith now Gio. You don't give a rat's ass about that trial. You are either posting to waste my time or you thought you had trapped me spamming my own trial or something (and can now see it's obvious I wasnt). Im not interested in discussing it further with you.
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