u/Lesliefourwinds

Would love to know if you’ve worked with someone who helped you. Thanks

Micronutrient? Oat test? Serum tests covered by insurance?

I have a medical condition that greatly benefits from getting direct sunlight outdoors. Right now the humidity is not doable even in the morning or evening so I cannot be outside for the amount of time needed for the treatment I give myself (10-30 minutes). I also can’t do it through an open window right now. Right now the best I can do is be right up close to a closed window and sometimes open the window for my arm.

Am I getting any of the infrared or UV from a double paned window?

Are there any materials that let sunlight properties through a barrier such as that used for greenhouses? Need the properties of the sunlight with air control. Similar to a greenhouse scenario.

Over the past month I have gotten to where I am fully bedridden relying on a caregiver to give me a bedpan and my legs shiver and when I try to stretch them out I shiver all over like you do when your muscles feel like that. I can’t sit upright even in bed because of extreme vertigo and my body just can’t be upright not because of pots but because it feels terrible all over the be upright. I am very weak. My arms are a little stronger but my legs and body are very weak and even turning over in bed is alot of energy I don’t have.

This all happened after a minor kidney infection requiring antibiotics. That was a month ago and I am still severely crashing. My labs are normal except slight elevated monocytes. Hospital will likely make me worse.

I need to find an me cfs doctor maybe someone online because I am so sick and my primary can’t do anything for me. Does anyone have any affordable options for someone who can tell me what tests I need.

My body feels so sick, I have never not been able to move like this. I feel awful all over. I really need to find someone who can help me. I am pacing as I can but I’m in bed already. Any help appreciated on finding a doctor.

Also please tell me encouragement that this is par for the course. I feel incredibly sick and my body does not feel human. When I sit up it feels so awful and foreign that I can’t even try it. When I stretch my legs out they shiver.

How do I pace when I can’t get to the bathroom even? Like how do I cut back?

Hi everyone, I have ME/CFS and infections. When I do this work, it feels like the infections get worse.

Has anyone else experienced this?

I have a mild kidney infection and will need to take Bactrim for 7 days. Due to my underlying Lyme Disease I’m concerned it may kill off some confections and make me sick. Anyone have experience with Bactrim and know whether it’s easy or hard to tolerate for Lyme folks?

I have underlying Lyme disease, so it’s sometimes hard for me to tell what symptoms are from the UTI versus my baseline health issues.

I developed burning with urination, chills, and a low-grade fever around 100. I started Macrobid about 48 hours after symptoms began. Urine culture was E. coli at 25,000-50,000 and both macrobid and Bactrim would work for it.

My primary doctor said that because I had even a mild fever, he personally may have chosen Bactrim in case there was any kidney involvement, but he agreed to continue with Macrobid since urgent care felt it was appropriate.

Before stating macrobid fever went away
Since starting Macrobid:
the burning with urination went away quickly
the chills are mostly gone
my appetite is still good
My urine culture showed the bacteria should respond to either Macrobid or Bactrim.

What’s still concerning me is that I continue to feel very flu-like and achy all over at about 36 hours into treatment. Like not waking around, in bed. I also still have a vague ache in my abdomen/pelvis/back area that worries me could be kidney-related. However, urgent care rechecked me and tapping on my back was not painful.

Current symptoms:
no fever
no burning with urination
normal urination
good appetite
Heart rate is around 70-80
vague pelvic/back ache
flu-like body aches and generally feeling awful at a level 7/10 which hasn’t changed.
Azo test now reads “negative”

My question is:
At 36 hours on Macrobid, is it still normal to feel this bad overall even though the urinary symptoms improved? Or does this sound concerning enough that I should consider switching to Bactrim because of possible kidney involvement that’s not allowing me to recover?
I also have a lot of health anxiety around infections because of my Lyme history, so it’s difficult for me to judge what is normal recovery versus something concerning, since antibiotics can make my underlying condition feel worse.

My biggest concern is that macrobid is not taking care of some of the infection that might be in my kidneys because I still feel so awful.

When I do the Azo test now it says negative for both leukocytes and nitrates. Two days ago it said positive. So does that rule out likelihood that I’m still feeling bad due to lingering infection possibly in kidneys?

I also want to give Macrobid longer to work if it takes awhile for it to work and I’m tolerating it well and might not tolerate Bactrim.

I started noticing it burned when I peed and then got chills and a low grade fever. That was 60 hours ago. I went to urgent care and they tapped on my back and it didn’t hurt. They prescribed macrobid. I was getting better so I waited and continued natural with cranberry. Yesterday got a little worse but fever went away. I started feeling a vague sense of pressure in back but didn’t really hurt when I pressed on it. I went ahead and started Macrobid at 48 hours after symptoms started. I still feel a vague pressure in my back that could be pain I’m not sure.

I’m so scared my kidneys are involved now. No fever or any other symptoms just vague back “pressure”. All symptoms are better than last night. I’m concerns though, do I need to switch to Bactrim or can I continue with macrobid? I feel body aches all over so it’s hard to say how bad the back pain in. I would say it’s not really pain but pressure. It doesn’t hurt when I move and it’s vague but there. Should I continue on with macrobid?

I hate not knowing, it makes me anxious.

I feel confused because urgent care gave me Macrobid but then my primary said if I’m having any chills/fever (even though it was only 100 and then went away) I should take Bactrim. Like I said I went ahead and started macrobid 48 hours after initial symptoms. And that vague back pressure is concerning me. No fever and good appetite but lots of body aches and feel flu like.

Urine culture has not come back yet . Preliminary culture test says:

“Preliminary urine culture report: 25-50,000 cfu/mL of Gram Negative Bacilli. E. Coli. Which means it is positive for bacteria. Typically >100,000 is more indicative and you are at or around 50,000, but bacteria is present nonetheless. I will let you know when I have the final report and that will give us more details. Thank you.” Culture came back E. coli and susceptible to either antibiotic.

Also white blood count slightly elevated. All other labs came back normal including CMP. But that was 24 hours before I started the antibiotic.

Please be kind!

I have made a lot of progress with severe dysautonomia (physical illness) using brain retraining but three symptoms remain and won’t budge. Fatigue, severe tension headaches, and the type of anxiety I’m going to describe below:

Does anyone else experience panic attacks where the main fear is that you’ll lose control of yourself?

I am working hard to get my life back but I don’t feel like the people I’m working with understand what I mean when I talk about the panic I feel. It’s hard to describe. My panic attacks are not rapid heart rate and sweaty palms, they are a very uncomfortable feeling of terror similar to when you’re up high (ontop of a building or something) and you’re afraid of heights so your legs feel like jelly and you feel so uncomfortable in your body (it feels like sheer terror) that you feel you are losing control of your body. So you feel like you either can’t move or you’re afraid to move because you might accidentally fall off the building because you can’t control yourself.

I currently struggle with having to have a safe person with me when I go out anywhere.
For me, this happens in situations like being up high or being away from the person(s) I feel safest with. I get waves of intense terror (especially when strangers are between me and the safe person) and feel afraid that the terror (the physical sensation I feel in my body of ice cold water everywhere) will become so overwhelming that I might do something drastic just to escape the feeling—like scream for help, run to a stranger, or, if I’m on a high balcony, fear that I could lose control and somehow go over the edge.

I want to be very clear, I do NOT have thoughts of hurting myself. This is more of a fear of losing control and accidentally doing things that are harmful to myself or others because I’m so uncomfortable with that feeling of terror. I do not want to do these things, and I’m not suicidal. It’s more a fear that the panic itself will become so intense that I’ll lose control.

The other times I’m felt this are when I’ve been on a roller coaster and the feeling of my stomach going up was not exciting but painful all over my body. It honesty feels similar to feeling extremely embarrassed in front of a lot of people. But it’s a physical sensation of extreme terror to where it feels both paralyzing and that you can’t control your body it’s so uncomfortable.

I was out the other day with a safe person and we got separated when we both went to do our own thing. I knew where this person was but then a stranger and his son stood between us for awhile (we were like 50 feet from each other) and this feeling of sheer terror came on. Despite not wanting to feel this way, the thought was “this feeling is getting so intense I can’t bear it anymore. Oh man, am I going to make an idiot of myself and run to my friend and scream in terror because I can’t get to my friend? Am I going to freeze and falll down becauee my body hurts so bad right now? I don’t know what to do! Shit!! This stranger and his son are going to think I’m an absolute lunatic. I can’t move my body! Shit! I’m losing control of my body!” Then I feel lightheaded and like I’m in a dream and genuinely feel intense terror all over my body and feel like I can’t move. It absolutely sucks!! And I was not this way until recently so I know I can get better.

Has anyone else experienced this? If so, how do you describe it, and what has helped you?

Please be kind. Im trying to learn if anyone else struggles with this and what has helped them. This all started after I did heavy metal chelation, so I know it’s related to something medical, but I’m working with a therapist and am having trouble describing this sensation without her (and others I’ve spoken to) just labeling it as a panic attack.

I believe at the root is fear of embarrassment, perfectionism, and being hard on myself. I’m just now sure how to make progress. Like I said, I’ve had a lot of progress with other symptoms getting better but not this one.

Please be kind!

Does anyone else experience panic attacks where the main fear is that you’ll lose control of yourself?

I am working hard to get my life back but I don’t feel like the people I’m working with understand what I mean when I talk about the panic I feel. It’s hard to describe. My panic attacks are not rapid heart rate and sweaty palms, they are a very uncomfortable feeling of terror similar to when you’re up high (ontop of a building or something) and you’re afraid of heights so your legs feel like jelly and you feel so uncomfortable in your body (it feels like sheer terror) that you feel you are losing control of your body. So you feel like you either can’t move or you’re afraid to move because you might accidentally fall off the building because you can’t control yourself.

I currently struggle with having to have a safe person with me when I go out anywhere.
For me, this happens in situations like being up high or being away from the person(s) I feel safest with. I get waves of intense terror (especially when strangers are between me and the safe person) and feel afraid that the terror (the physical sensation I feel in my body of ice cold water everywhere) will become so overwhelming that I might do something drastic just to escape the feeling—like scream for help, run to a stranger, or, if I’m on a high balcony, fear that I could lose control and somehow go over the edge.

I want to be very clear, I do NOT have thoughts of hurting myself. This is more of a fear of losing control and accidentally doing things that are harmful to myself or others because I’m so uncomfortable with that feeling of terror. I do not want to do these things, and I’m not suicidal. It’s more a fear that the panic itself will become so intense that I’ll lose control.

The other times I’m felt this are when I’ve been on a roller coaster and the feeling of my stomach going up was not exciting but painful all over my body. It honesty feels similar to feeling extremely embarrassed in front of a lot of people. But it’s a physical sensation of extreme terror to where it feels both paralyzing and that you can’t control your body it’s so uncomfortable.

I was out the other day with a safe person and we got separated when we both went to do our own thing. I knew where this person was but then a stranger and his son stood between us for awhile (we were like 50 feet from each other) and this feeling of sheer terror came on. Despite not wanting to feel this way, the thought was “this feeling is getting so intense I can’t bear it anymore. Oh man, am I going to make an idiot of myself and run to my friend and scream in terror because I can’t get to my friend? Am I going to freeze and falll down becauee my body hurts so bad right now? I don’t know what to do! Shit!! This stranger and his son are going to think I’m an absolute lunatic. I can’t move my body! Shit! I’m losing control of my body!” Then I feel lightheaded and like I’m in a dream and genuinely feel intense terror all over my body and feel like I can’t move. It absolutely sucks!! And I was not this way until recently so I know I can get better.

Has anyone else experienced this? If so, how do you describe it, and what has helped you?

Please be kind. Im trying to learn if anyone else struggles with this and what has helped them. This all started after I did heavy metal chelation, so I know it’s related to something medical, but I’m working with a therapist and am having trouble describing this sensation without her (and others I’ve spoken to) just labeling it as a panic attack.