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Does this sound like Long Covid?
For about five years now, my husband has had crushing fatigue, where he’ll wake up refreshed, but then he’ll need a nap an hour or two later and then take a second nap in the afternoon, and still sleep 11 to 12 hours at night. He doesn’t seem to have post exertional malaise. He also had chest pain and shortness of breath. Those last two eventually went away, but were replaced by dizziness and brain fog about two or three years ago. Then about a year ago he developed a slight hand tremor. His PCP referred him to a movement disorders neurologist. The skin biopsy test for Parkinson’s was negative and his hand tremor is not like the usual Parkinson’s tremor. The neurologist never mentioned Long Covid but that’s what I’m starting to think this is.
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Wow I could have written this. My husband is exactly the same as yours! Since 2022. Same exact symptoms. All tests have been “normal”. Just went to tick borne illness clinic. They have started antibiotics and supplements to treat Lyme and co-infections while waiting for actual Lyme test results. It’s only been three days so no change yet. Still not sure if it’s long covid, Lyme or other tick illness or I guess possible mold or heavy metals. Maybe it’s some form of dementia
His brain fog and extreme fatigue are increasing I think. Still has anxiety and shortness of breath. These symptoms are so out of character for him. Type A personality, always up for anything, could do anything mechanical and was able to do math in his head. These traits are all gone. It’s so hard to watch him failing and I can’t do anything other than research. Hoping between tick clinic and long covid clinic next month we get an answer. Main stream medical has failed us.
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2 Reactions@arichards3 what are you doing for mold illness?
@bentstiks2
Which doctor is testing for Lyme disease?
Would he have all those other symptoms though if it was “just” dementia?
@sjde53 we have a tick borne illness clinic in northern WI. I wish we had contacted them sooner!
I thought the same thing with all his symptoms he has had and some have gone away that it can’t be dementia…. But what do I know! We have had so many medical tests done and they even put a loop recorder for his heart in his chest for a year and a half with nothing showing up that whole time. We had to ask to get it removed. Of course they were billing the insurance company $1700 a month to read the recorder!! It is so sad that our medical system is all money driven and they really don’t care is you get well.
@bentstiks2 I want to know as well. I was officially diagnosed with Long Covid two years ago - - but I think I've had it for four years. A variety of Doctors seem to be just guessing at how to treat me. It is so frustrating because I still need to work and make money -- I own a straight commission franchise (publishing a magazine and sell advertising) and I continue to have debilitating energy CRASHES. How do people get their energy back? How do you know if Mold or Lyme Disease is connected to the LC? Where do you find doctors who will take you seriously?
@amyqk a lot of information on this web page regarding Lyme
https://igenex.com/tick-talk/how-to-find-doctors-who-can-help-with-your-tick-borne-disease/
@bentstiks2 First testing to verify that you have Mycotoxin Antibodies in your body. Then a regimen of Itraconazole, reccomended supplements over a period of about 6 months. That is after one has verified that their exposure is understood and remedied. That exposure is usually your home. In my case it came from 40 years of working in factories with wet and dark process areas.
@amyqk you begin with a blood test. You will find there is debate between urine and serum. I happened to do both. Watch a Dr. Andrew Campbell YouTube for orientation. There are many crossover symptoms between Mold Illness and Lyme and LC and even Parkinsons. Most Doctors are completely uninformed and dont even think to test for Lyme and Mold.
@arichards3
Did your PCP do that testing?
@sjde53 No. I am Medicare and very little of the mold regimen has been covered, but my PCP has been wonderful coordinating as much as he can with things like Itraconazole scrip. He can’t write a lab order because it’s not listed. When you source the test kit they will give you a list of commercial labs that will draw blood and send it in. Watch an Andrew Campbell YouTube. There are several that cover the blood testing. Best of luck.