Lyme Disease

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    Community Voices

    Desperately Wanting IV Fluid

    Has anyone been able to get an IV from an Urgent Care etc? I’ve been so badly dehydrated and I can’t keep much down. I got food poisoning a few weeks ago and it completely F*&%#? up my stomach. I’ve been drinking water every ten minutes but I haven’t been able to keep down my electrolyte drinks, only my vitassium pills and extra salt on the mashed potatoes I can eat.
    But because of the horrible experiences I’ve had with ERs, Urgent Cares, and Drs I have trouble believing anyone will believe me and help. Especially since I don’t think my doctor ever put POTs as an official diagnosis on my chart.
    And on top of that I’m hypoglycemic (non-diabetic) but haven’t been diagnosed. So I’m dealing with both but can’t seem to get help. And getting my family to want to take me to the dr has been… awful. They are treating me like it’s nothing. Just my Lyme disease acting up. And our insurance ran out yesterday and doesn’t start again until the 12th.
    I’m so done. So sick of this. The only ones that seem to care are the dog and cat. (And I’m sure some of you all on here too. Hence this post…)

    #PosturalOrthostaticTachycardiaSyndrome #AutonomicDysfunction #Dysautonomia #ChronicIllness

    8 people are talking about this
    Community Voices

    hello! good to be here. thank you Thomas! Looks like a great group. I'm happy to be here. Here is the article you suggested I share.

    the below is the text to the article. there is a video on the site it comes from that is very much worth watching (9 minutes long)

    I’ve posted a couple of times about having TD. It is an awful debilitating, crippling and disfiguring disease caused by iatrogenic injury. I just discovered the National Organization for Tardive Dyskinesia so I thought I would share. There is very little accurate or clear information about this disease. I have avoided doctors mostly as I’ve not encountered anyone that seems like they would do anything other than harm. Neurologists who treat TD are prone to use psych meds and the MDs I saw mostly shamed and dismissed me as crazy. I did have a psychiatrist who was also a friend diagnose me and it’s very clear that I have TD. I go from being physically okay to being able to hardly stand up in the same day. I suffer from acute and chronic pain in my face, head, neck and shoulders. I am often totally unable to function as a result of this drug injury. I’ve written very little about it because this site was about recovering after coming off psych meds and well, I’ve got my mental health but I am not well. It’s likely I will never be well. My only goal now is to learn how to cope better. As readers of this site know I’ve exhausted all manner of behavioral and lifestyle healing methods. This is not an easy ride.

    (video is placed here:

    My work on TD is below. I’ve experienced it very much in my own way and written very little. Perhaps I’ll write more moving forward. My experience suggests systemic infection as it’s clearly involved with the various systemic infections I was diagnosed with as Lyme Disease. (Lyme is amorphous systemic infections that vary greatly from person to person depending on the combination of pathogens…if the organisms associated with Lyme disease is presnt you can say you have lyme disease…it seems to me many people have systemic infections complicated by heinous biofilms that don’t always get diagnosed as lyme…so I don’t really like that diagnosis as I think it’s lacking in clarity.)

    TD also varies greatly in severity. It seems the brain injury from long term use and withdrawal made mine severe in some pretty particular ways. I look forward to getting to know others with TD and am scheduled with a group support meeting at the organization that made the video.

    My pieces that include my early musing on TD: for links go here:

    6 people are talking about this
    Community Voices
    Community Voices

    I’m new here!

    Hi, my name is JenniZebra. I'm here because I suffer from Stiff Person Syndrome and CVID, a rare primary immune deficiency disease. I also had a battle with Lyme Disease in 2017. I hope to connect with other zebra's! 🦓💪

    #MightyTogether #stiff-personSyndrome

    4 people are talking about this

    Taking Back Our Power in Life With Chronic Illness

    Disempowerment. That can be a major side effect of chronic illness, which strips away our dreams, our goals, our entire life and leaves us feeling powerless. We give our power away to doctors. We deal with doctors who invalidate us or give us diagnoses that we know feel wrong, but we listen to them because we are desperate to get answers. We give our power away to toxic people. We deal with people who tell us our symptoms are in our head and our treatments are ludicrous, and we question everything we are doing. We give our power away to others we don’t even know. We compare ourselves to others, especially on social media, and then wonder why we aren’t getting better as quickly and question if we are doing something wrong. Or we feel bad being honest about how we feel because other people “have it worse.” So how do we take our power back? 1) We follow our intuition and trust what we feel. Only we know if a doctor feels off, if a treatment feels wrong, if we feel worse or better. We don’t let anyone convince us that how we feel is wrong. 2) We don’t let people make us feel a certain way. There will always be people that test us and trigger us, but we have the power to respond rather than react. We have the choice to not take things personally and to remind ourselves that if people are judging our medical decisions, that says more about them than us. 3) We feel our emotions. All of them are valid. By suppressing or resisting them, they become overpowering and we can feel like they are in control of us. But actually sitting with and feeling difficult emotions is extremely powerful and healing. 4) We realize everyone is on a different path, and everyone’s body and medical situation are completely different. Just because one person responds well to a certain treatment doesn’t mean that it will work for us. And that’s OK. We realize we are all doing our best to get better, and that will look different for everyone. 5) We take all the energy that we spend worrying about things we can’t control (symptoms, flare-ups, diagnoses) and instead put it into things we can control, like giving ourselves what we need in the moment (rest, sleep, a long cry, a bath, going out with friends, texting someone, etc.) and taking care of ourselves like we do others. No matter what others say or do, and no matter how we feel, we can always make empowering choices in each moment.

    Community Voices

    I finally did it !!

    <p>I finally did it !!</p>
    8 people are talking about this
    Community Voices

    A New Reality in Mom Stress

    <p>A New Reality in Mom Stress</p>
    Community Voices

    I’m new here!

    Hi, my name is edaddy5. I'm here because my wife is suffering from drug resistant anxiety and depression and possibly ptsd. she also has post-treatment Lyme disease which is at worse causing it and at best aggravating it. it’s been three years now. I want to help her.


    3 people are talking about this
    Community Voices
    Community Voices

    Hang in there

    <p>Hang in there</p>
    1 person is talking about this