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ME/CFS... then Covid-19, then Long Covid

Messages
5
My daughter was diagnosed with ME/CFS as a teenager. She spent several years mostly bedbound (dark room, headphones, etc) doing virtual school to the extent possible. She is now a young adult. She figured out how to have a job and go part time to college remote - has lived with it for many years and is accustomed to it to the extent possible.

This year, though, she got a 'mild' case of Covid-19 which lasted 1-2 weeks. Ran a fever, had flu-like symptoms, lost smell for a few days and then got it back. Then, basically recovered. A few weeks later she got a UTI. And, then again a few weeks later. By now, she'd had 7 or 8 UTI's. She also has frequent bouts of nausea and intestinal issues, as well as the usual exaggerated ME/CFS symptoms. And, ad hoc histamine responses. She's sitting at her desk and suddenly there's a rashy bright red spot on her face and in a few hours (or with cortisone) it goes away.

We suspect the nausea is a combination of stomach damage done from antibiotics for the UTI's and also tummy viruses circulating in women in the office who have school age kids. She's using a peppermint based product and ginger.

After a few UTI's we researched and discovered recurring UTI's and other intestinal issues are Long Covid symptoms. Covid-19 also causes immune deficiency, making her more likely to be unable to fight off UTI's and also other tummy viruses. So - now she has Long Covid on top of ME/CFS - which is ironic, as some suggest they may be essentially the same thing but clearly something has changed, so perhaps this is now a worsened form of ME/CFS.

I was trying to figure out which thread to post to on Phoenix Rising.but wasn't sure where is the thread for 'I had ME/CFS and then got COVID and then got Long Covid'. I don't see Long Covid under 'comorbid diseases'.

Has anyone here experienced something like this? Do you have ideas about how to tackle the recurring UTI's (infection confirmed, not just OAB) and tummy issues, or how to tackle the Covid-caused immunodeficiency part of this situation. We have IV clinics in the area. Do you think a Myers Cocktail IV would help? I read differing opinions on whether it's efficacious.

Thanks for any insights you may have, if this is the wrong thread, please direct me to the right place. It has been years since I posted here so I'm a bit rusty. Thanks!!
 

Shanti1

Administrator
Messages
3,139
Hi @dfwmom I'm sorry to hear of the challenges your daughter has had, as if ME/CFS isn't already enough to deal with! I know there are some here who had a worsening of ME after COVID and others who returned to baseline.

Regarding the UTI, I have had success with D-Mannose, uva ursi, and cranberry for treatment of mild UTI and prevention of recurrent. Sometimes D-mannose can work alone as a preventative measure. It is also important to know which bacteria is causative. There is more evidence for E. coli against gram negative than gram positive bacteria, for example.

Role of D-Mannose in the Prevention of Recurrent Uncomplicated Cystitis: State of the Art and Future Perspectives https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8066587/
Why d-Mannose May Be as Efficient as Antibiotics in the Treatment of Acute Uncomplicated Lower Urinary Tract Infections—Preliminary Considerations and Conclusions from a Non-Interventional Study
You could also ask her doctor if an antibiotic such as Nitrofurantoin (Macrobid) would be appropriate, since it is mostly only activated in the lower urinary tract, sparing the gut flora.

Some people swear by Myers Cocktails but for me, since even small amounts of oral magnesium make me worse, it would probably set me back. I think it depends on how reactive she is to things. Many of us do feel better though with IV fluids. You could try a lower dose, like 1/4 of the doses Myers first.

Pepto bismol (bismuth is the active ingredient) may be worth investigating for nausea. It has been proposed to have antiviral activity against COVID as well. (note: bismuth should not be used for months on end):
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8964506/
https://www.frontiersin.org/articles/10.3389/fddsv.2022.962988/full

Priority One also makes a bismuth product without the pink stuff, but it has lipoic acid and black cumin seed in it, which means more stuff to react to:
https://www.priorityonevitamins.com/Biofilm-Phase-2-Advanced™-60-Vegetarian-Capsules-_p_28.html

On my personal journey, I have found Oxymatrine and Cycloferon to be the most helpful immune stimulants. I think reactivated EBV and other viruses need to be considered as well in cases of long-COVID.

Wishing you the best!
 

Hip

Senior Member
Messages
17,824
Has anyone here experienced something like this? Do you have ideas about how to tackle the recurring UTI's (infection confirmed, not just OAB) and tummy issues, or how to tackle the Covid-caused immunodeficiency part of this situation.

About 30% of existing ME/CFS patients get worse on contracting COVID, according to this poll. I am one of them.


Many years back I had recurring UTIs which antibiotics would not cure (would not prevent recurring). Eventually I found that taking the old Roman treatment for UTIs, namely horsetail herb, I was eventually able to almost eliminate my recurring UTIs. Though it took many months of treatment.

You may be interested that Dr Markov believes ME/CFS is caused by a bacterial dysbiosis in the kidneys, and claims his treatment for these kidney bacteria completely and permanently cures ME/CFS in 93% of cases. A few of us on this forum have starting trying his treatment.
 

BrightCandle

Senior Member
Messages
1,147
Covid made me worse too. I didn't suffer much with the illness just taste, smell and a bit under the weather but a month later I crashed hard and went from mild to severe overnight and I couldn't get out of bed for 9 months. It made my testicle pain a lot worse for at least two years. Since I have been doing commercially available things for Dr Markovs kidney theory I have at least reduced the pain and frequency of issues.
 
Messages
2
I used to have frequent UTIs. They disappeared with changing to a strict low-histamine diet. Many ME/CFS patients seem to have issues with histamine, so you maybe already tried it, but maybe not, so here's my 2 cents.