Hello Sjogren's friends,
Months ago I asked my family doctor what I should do if I got sick. He told me not to call him! I was shocked. He said to get "supportive care" at home and if I had trouble breathing to go to the ER. That was not good enough for me. I asked what "supportive care" meant and he said Tylenol and some vitamin D. I asked about some of the well-known, long-standing treatments and he brushed them off.
I knew I was on my own. I couldn't even call my own doctor! It has raised a lot of questions for me - something is seriously wrong. I read broadly, talked to friends who are health conscious and together we came up with our own protocols. We have all had either Delta or Omicron, treated ourselves similarly and are all doing well. I am just recovering from Omicron. I tested negative - twice - but lost my sense of taste and smell and had the other symptoms. Yes, who/what do we trust?
I want to say that although my husband and I did not have a good sense about the shots, we needed to get them in order to cross into the US to see our son whose wife had died. He's within easy driving distance and we did not want to quarantine each time.
Something I find very strange is that people don't talk about what is available in their own drugstore. Are we so programmed that we can't even think on our own? We can treat ourselves at the first symptom! We used Tylenol, vitamin C, D, zinc (along with its companion quercetin) and lysine. Some used nebulizers, nasal rinses, humidifiers, fans and the old-fashioned gargle with salt water. We drank like crazy. My husband and I did not isolate from each other and he hasn't had it. Maybe he will in time and if he does, I'll do the same thing as with our son and his children when they got sick. They are fine. We also used ivermectin. It is listed on the NIH website in Table 2e under Remdesivir but it appears to be available only on a trial basis. Very few doctors will prescribe it although there are scores of trials that show its effectiveness if used early.
It is a dreadful virus and can have disastrous outcomes. We wait and worry and wonder what to do if we should get sick. We can top up our vitamin D anytime. We can take a little zinc, prophylactically, and try to stay as healthy as possible. Our doctors could have been giving us hand-outs long ago with basic tips. When the virus first made the news I talked to a pharmacist. He said: take zinc, it coats the lungs. Why would our doctors not tell us this? Even so, the pharmacies quickly ran out at the time.
I'm so sorry some of you are having trouble getting Plaquenil/HCQ. Sadly, politics has mixed with medicine and we bear the consequences.
I do hope this gives some encouragement and some proactive tips (not controversy) for those who wait and worry. We have autoimmune issues and it helped me to have a plan - to feel proactive! - and not panic when I did get sick. I went to my to-do lists, talked to my friends for support who had survived, we prayed for each other and it all helped!
Best wishes,
Sunflower
Thank you for your message with needed information. This has been a very strange disease with very strange reactions by many different organizations along the way. We all have our own opinions of what is going on and what Information to believe in order to survive with the disease. So glad that you are well and also so glad that your were able to ask your doc to find out what kind of treatment you would need. He said what a lot of docs have refused to say. Strange times we live in.
Hopefully we are all learned more about this virus and about what can help us and our family. Being able to talk about life and its experiences does help us all to cope better and learn from others. Take are and stay safe and healthy. meirish
Hi sunflower.
If you have access to the internet , you have access to healthcare. A******* F******** Drs. Will practice telemedicine with you and you can get scripts for Ivermectin and or Hydroxychloroquin to treat yourself. Both drugs have been used for over 50 years. I take Hydroxychloroquine (Plaquenil) for my sjogrens and RA, so that may be while I have been healthy these past 2 years....None of us in our family has been ill....no one vaccinated.
If anyone takes the vax, do not take any made with mRNA. Very disturbing news coming out in other countries about HIV found in some. Do your research.
Stay healthy.
Shelly
Thank you. Yes, I am well aware with the doctors' group and thankfully, their message is gaining recognition. I have been very interested in the fact that many of you are doing well on Plaquenil and have been for years, yet it is verboten for the virus.
Yes, this is a topic of many opinions. My husband and I have found it very worthwhile to vary our sources as we read and try to be our own advocate. I'm thankful for this forum where there is some freedom to share what has helped us. My point in writing was to show there are treatments that are right in our pharmacies that we can use. I have also made friends with my pharmacist. They know a lot about these things!
I forgot to list one important treatment that I and my friends used when we were sick. It is oil of oregano - also available at your drugstore. I had used it before for a stubborn cough, and I know of immunocompromised cancer patients who use it with infections in order to not overuse antibiotics It's nasty stuff and difficult to tolerate. I was advised as to how to use it by a natural health provider (you could also ask your pharmacist). It can also be dropped into a teaspoon of olive oil.
I sincerely hope this is helpful to someone.
We are armed with ivermectin. We also take Vit D3 and K2 every day. We aren't able to take Vit C, but if you are able, you may want to add that.
We also take zinc.
Because I have MCAS, I take antihistamines and Pepcid every day. Turns out that that combination also helps CV symptoms.
In OCT, we think my husband got CV. Never had any of the classic symptoms except sinusitis-type symptoms. One month later he realized he had a lot of fatigue that had lingered.
He went to get antibody testing and found out he had the antibodies. I was never sick a day and I was also tested and found to have antibodies for CV.
If we had known my husband actually had CV at the time, he could have taken ivermectin and perhaps have avoided the fatigue.
I guess that is one case for taking it for prevention!!
We were afraid to do that since it became increasingly difficult to obtain the ivermectin during the past year.
If I were you, I would dump that useless doctor ASAP! He is not praciicing medicine to help others.
All of the measures that have been mentioned are long standing standard approaches to viral infections of any type. It's up to us to determine which we can tolerate and find beneficial. As an example, I can't tolerate Vitamin C, Echinacea, or zinc, as they all cause flares, and turmeric causes excessive bruising, but I find that thyme tea with honey will break up congestion, soothe a cough and sore throat, and quite often one or two doses seem to end an oncoming cold or respiratory condition before it takes hold.
About 12 years ago here, we were very delayed in obtaining that years vaccines, due to the original shipment sent here being contaminated (none was given). My doctor at the time, suggested doubling up on my Vitamin D, which he had recommended at 2000 IU during the summer and 4000 IU during the winter, and I had no difficulty with that years flu, although my husband was quite ill with it. He also suggested the thyme tea, which I've used ever since, and (based on daily steroid use and a strong family history of diabetes, both types) that I take about 5 ml of cinnamon almost daily, to help control blood sugar, 15 years later, my A1Cs remain in the range of 5 despite my high risk category.
That doctor was a regular, western medicine doctor, old school in many ways, but not one to order medicine without very well defined reason, and one to encourage medicine when he felt it appropriate even when I was reluctant ( pain meds for example). He was also open to discussing my reasons for wanting or not wanting a particular medication, and never tried to convince me, we just discussed both approaches. When he announced his retirement I was very concerned that I'd never have such a reasonable GP again, but to my surprise, my new, young, very modern GP follows very similar guidelines.
Both agree that sometimes, old ways are best, but new ways work, and a cooperative combination of both is very effective in many cases.
Linda, you were so lucky to have that forward thinking doctor all these years. Do you make your thyme tea out of the herb or do you buy tea bags, etc...I can't take vitamin C as it upsets my reflux. The vitamin D is turning out to be such a good supplement to take for many things. We do need to get our blood levels checked occasionally. So many of us run such low levels. I have been on Vitamin D for years due to very low counts and I am up in the low 40's now so that is sort of a mixed blessing for me.
Hope you are staying warm and safe during this long, old fashioned winter. Reminds me of when our boys were in school. Had to dress well on those school bus rides. Take care. meirish
I've taken Vitamin D probably since birth, starting with the dreaded cod liver oil! At this latitude it has always been accepted that we don't get the sun exposure those south of us do, so starting at Thanksgiving every year, we were all lined up after dinner and gagged down a spoonful of the vile stuff right through to the Victoria Day in May! Now I change my dosing based on Daylight savings time, 2000IU during the summer months, 4000 during the winter, and take capsules. I've never actually had a low level, low normal maybe but that's all. I make the thyme tea with the dried herb in a tea ball, and add about half a teaspoon of clover honey to each cup.
I always thought my grandmother was something of a Victorian lady, and she avoided sun exposure to maintain a porcelain complexion, even when working outside all day, so she always took her oil, and was remarkably healthy into her late 80s, when she developed Lupus.
I was just saying to a friend last evening that this winter reminds me of my childhood, for snow. And now that you've started me thinking of my Nanny I'm remembering climbing up the drift to her pantry window high in the wall above the 4 foot foundation so the drift was probably about 8 or 9 feet, reaching in the always open-a-crack window, and grabbing cookies from the cookie jar conveniently placed on the windowsill LOL
Cute story, Linda!
We have a doctor much like yours. He's worth his weight in gold.
These replies are so interesting! I'm going to keep some notes.
I took cod liver oil as a kid as all my sibs did, and my dad always marveled that we didn't mind it. I guess the older influenced the younger and we didn't know better!
We live north of the 49th and are short of sun here too. I've been taking extra since CV hit but could take more. I have lingering fatigue and a stubborn cough after having Deltacron (or something of that nature) a few weeks ago. Oil of oregano didn't seem to help this time, and it's hard to know if the IVM did.
We haven't tested for antibodies but I would think my husband has a good count.
The hardest part is the lingering effects of the inoculations. A Sjogren's flare for one and it's ramped up generally when it was stable for years, the other is myocarditis (inflammation of the heart muscle). My cardiologist therefore ordered a stress test which I had earlier this week. The technologist stopped me shortly after she speeded it up. I was too short of breath for her to allow me to continue. She said my heart rate was up to 137 - that's all. She stepped out to talk to the cardiologist. When he came in and assured me I had no blockages I asked how much I should exercise. He said, "Until you are short of breath. Try to build up." Well, that's not much. I did some raking outside in the yard today and had to stop. I have atrial fibrillation and had a massive attack post injections. I'd had a procedure for it a few months earlier and was fine but 6 months later I was in emergency.
My GP has been informed by my cardiologist that I shall NOT take any booster. But I doubt I'll even talk to him about my episode when I see him next week. I don't see the point. Yes, I should fire him but here, I may be left without a doctor altogether.
To mandate such a harmful drug and ban life-saving treatments is a crime in my view.
I took the cod liver oil also when I was a child. I had forgotten about it. We were given a piece of dill pickle to eat to help get rid of the terrible taste. I don't remember when we ate the pickle, before or after the cold liver oil. I do remember the taste of the pickle with the oil and I can almost taste it as I think of it. WOW!! meirish
I am reminded that we are all so very different...different diagnoses, different allergies and tolerances, etc.
There is no 'one size fits all'. As with all advice, take what you need and leave the rest.
I have Primary Immune Deficiency...which means it is possible that none of my vaccinations are actually giving me protection. I may be getting some antibodies from those who donate the IgG for my infusions (every four weeks), but as my Immunologist and my husband pointed out, circulating antibodies in my blood are only the first line of defense, but my own compromised immune system will not kick in to learn to make the antibodies to a Covid Infection.
So, I just don't go out except to doctors' appointments.
The advice to stay at home until you have breathing difficulties (I have a PulseOx, to measure the level of oxygen in my blood btw) at which time you should go to the hospital, is standard. You are in more danger in the ER than anywhere else until you MUST be there.
Tylenol for fever, fluids, whatever vitamins and minerals work for you, NSAID for body aches (I think),
In June 2020, I went in through the ER, taken by EMTs, with e-coli in my blood from an asymptomatic UTI. I spent 3 days in the hospital on IV antibiotics at the HEIGHT of the pandemic, with no vaccinations for anyone at that point. I had NO choice.
Since then I've had two elective outpatient surgeries, a tooth extraction and implant and a crown replaced, and an endoscopy/colonoscopy.
Every four-six weeks I have injections in my Cornea for macular degeneration, diagnosed last year., 2021, before I had any vaccinations. My nurse comes every four weeks to administer my IVIG.
I want to be safe, I am lucky to be a patient through the Duke University Medical System, and I trust my doctors.
I wish you all the best. These are the times that try our souls, for sure.
Elaine
I had it in Dec 2019. 2 steps from Wuhan. I used frequency then and have been trying to avoid it like the plague it is.
A friend has been dx'd 3 times with it and has been treated as an out patient. Good Luck!
I had COVID last Nov and was very sick. My dr recommended me to get the Monoclonal Antibody infusion and that was a life-saver for me; after 24 hours of the infusion I felt like a new person: no fever, malaise, chills, headache, etc... It totally reversed the illness for me. Amazing and I would recommend it for anyone.
Also, my rheumatologist said that he recommends that I get the monoclonal antibody infusion every 3 months, along with the vaccination, regardless of whether or not I get COVID.
Kelley