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Wed, Mar 11 1:26pm · COVID-19 Coronavirus and Lung Health: What can you do? in COVID-19

Hi @contentandwell. I suspect that I have Lyme or a co-infection of Lyme as I have had more than 7 IgM Lyme bands show reactive or positive on a Quest test and a Stonybrook test but they weren't identical results which makes the whole journey that much more confusing and lengthy process. Even MDs don't agree with one another on the topic and treatment of Lyme. I am currently one band shy of being CDC positive but LLMD's don't follow they order & number of bands to a tee like the CDC. I guess some people can show negative with no Lyme bands on all tests except a tissue biopsy or spinal fluid test- hoping to avoid those methods. I just got the Igenex blood lab drawn so we shall see what that shows. Regardless I think (fingers crossed) I'll finally gets some treatment but the Lyme Doc I saw recently said it's most likely chronic at this point because I went untreated for so long. I am not bed bound like some people but I am tired or running on low everyday because my sleep is so disturbed. I feel old and slather on CBD oil before bed, hope to put it in remission as well. It's a pandemic though that is sadly going without enough discussion. I don't wish it on anyone and hope less people will be in my shoes or worse off shoes but I am grateful it's not worse.

Wed, Mar 11 1:18pm · COVID-19 Coronavirus and Lung Health: What can you do? in COVID-19

Thank you Merry. I will click your link and look into it. I think had I suspected Lyme back in 2018 with the rash, I might not be in this situation but I was under the belief as most MD's seem to be, that you have to have a bullseye or tick in hand. I begged for antibiotics back in May practically broke down in tears in MD office and because that first Lyme antibody said negative, they said they can't treat. I've never been on any scripts my entire adult life so to say I've been really frustrated is an understatement but at least it's not cancer or ALS. I originally thought I had ALS or Parkinsons due to the twitches so at least my mind is not in that dark hole presently. Well wishes to you and I'm sorry you have lung cancer.

Wed, Mar 11 1:14pm · COVID-19 Coronavirus and Lung Health: What can you do? in COVID-19

@brigby
Wow Brenda, thank you. Your info may be helpful in getting me some more answers. I appreciate your comments as I felt I've been riding this journey pretty solo. Do they tell you what your twitches are from??? The Neurologist said that sometimes people just have benign twitches and some have them forever. But I went from never having them to so frequently, especially when I knew something was really wrong with all the symptoms I was having. I did not show out of range for anything obvious on traditional blood tests. I've tried self treating best of my ability with herbal tinctures/supplements from naturopath and some I got on my own. I think they've helped some but nothing has gotten rid of the daily pains entirely or the pulse like twitchy feelings and my sleep is so bad that I don't know what is causing what (if that makes sense). It's like the chicken or the egg, hard to know.

May I ask how or what tests or MD's did you see to help you to determine your bronchiectasis and abscesses, fungi and bacteria?
Did you do a particular panel of some kind? I only know test wise that I tested positive IgM Mycoplasma Pneumoniae back this summer got no treatment because at the time my latest NP said everyone tests positive for it and mainstream med doesn't treat it!!! I also had a very low CD57 level of 24 which I guess is very concerning and was flagged by my local hospital lab as abnormal and yet still got little to no help. I was on a very long wait list to be seen by a Lyme Doc which just took place recently. So, I am hoping something will change for the better because this whole process has really put a sour taste in my mouth with trust in the medical community. I know they are probably just uneducated but you get passed along from one person to the next and no answers just costly bills. Thanks in advance for your info/comments.

Tue, Mar 10 5:19pm · COVID-19 Coronavirus and Lung Health: What can you do? in COVID-19

Thanks @merpreb Merry. I've been trying to get the Lyme and/or other mysteries figured out since last May when I returned from Costa Rica . I now believe I was most likely infected in US, October 2018 when I had a strange round rash on my elbow (no bullseye), shortly after got diagnosed with Frozen Shoulder in same arm and was a grueling journey in itself all of last year with those pains/limitations but on top of it other strange symptoms began: pressure headache, neck-ache, hair loss, tender gland near my ear/throat same side as arm, then in late winter of last year in Costa Rica my other arm began to hurt, I had sore quads (more in one same side as frozen shoulder), weight loss, then got weird pulse like twitches that haven't gone away (were worse May until Sept) now lessened a bit. Through all of this and possibly connected, my sleep has been very poor/disturbed. I assume in part due to pains and pulse like twitches so I never feel well rested. Rheumatologist doesn't think it's RA, Lupus or Fibro- not enough pain points, no swelling or red joints, etc. but man I'm not the body or self I used to be. Hoping that is not my forever normal. Getting Igenex test tomorrow, one band shy of CDC positive for Lyme on a different test.

Tue, Mar 10 11:37am · Troubling illness for 3 months. in Blood Cancers & Disorders

Sorry @mattkl817 , didn't see your reply but hope you are faring better by now?

Tue, Mar 10 11:34am · Tick Borne Illness with misdiagnosis Lone Star Tick BIte in Autoimmune Diseases

@ramseyiiis Lee, I hope you are doing better since this is an older thread? I've been dealing with Lyme symptoms which I didn't connect to back from Oct 2018 but symptoms really took a crazy toll May of last year 2019 and still have some of the symptoms that never were away such as joint/muscle aches/pains, terrible interrupted/disturbed sleep and pulse like twitches that seem worse at night or upon waking.

Tue, Mar 10 11:23am · COVID-19 Coronavirus and Lung Health: What can you do? in COVID-19

I feel like the general consensus is no big deal only old people which in itself is just awful to say/think. I am 46, husband is 50 & I am dealing with Lyme symptoms with a weakened immune system based one of my blood labs so I know I may be more at risk so we pulled out kids out of school. I'd like to have more faith but I simply just don't, as either people won't know or won't care enough.

Tue, Mar 10 10:26am · COVID-19 Coronavirus and Lung Health: What can you do? in COVID-19

@alamogal635 Yikes, that's scary first testing negative and then positive? I'm in NH and NH and many other states have kids & some adult chaperones, parents etc that traveled to Italy during school break recently. Our district asked the kids to stay home but who knows if they are self quarantining and or had any testing, we just know they aren't showing symptoms last told. What's concerning is if not self quarantining or asymptomatic they are in contact with family members who did go to school. I think it's just beginning to show up due to testing availability.