posted
How do you emotionally deal with feeling not believed by other people, and people thinking you're crazy when you're suffering?
It's hard for me to not take that to heart. It's especially hard when doctors don't believe me, when I'm suffering and I'm coming to them for help. It's hard being sick and being betrayed this way by the people you go to for help.
Posts: 241 | From New Jersey | Registered: Jan 2015
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
This is so heartbreaking.
Keep your integrity and dignity. Hold your head high. Become a hugger, hug your loved ones. They will notice a change and hopefully come around.
My family finally got it when I started crying while eating my turkey dinner on Christmas.
As for doctors, don't waste your time on the deniers. Move on. They can only set us back in healing and wellness, no good can come out of it, not productive in any sense.
There are noble doctors that truly care about their patients. It's sad we have to weed out the bad ones and find the good ones, especially when we are so ill and lack the energy.
I've gone through 25 medical providers through this nightmare.
I now use main-stream doctors for insurance covered treatments to lessen my symptoms, such as epidural injections for herniated disks, physical therapies for severe muscle loss, MRI's, prescriptions, vitaminB injections, pain management, immune support, documentation of my physical journey, mental wellness, anything that will make me feel better, lessen the load monetary.
All Lyme treatment protocols are through my LLMD. She's always saving my life, bless her.
Stay strong MissVictoria. ❤️
Posts: 2977 | From Florida | Registered: Nov 2016
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I had an appointment today that was emotional for me. I got Lyme for a second time over the summer, and I've been having heart palpitations every day, so I went to a cardiologist last month who ordered heart tests. I had an appt with him today to get the results and everything came back normal and the doctor, not him, who interpreted the results suggested that it was anxiety. My doctor seems concerned about me and didn't seem to believe that other doctor. But he can't do anything for me because the tests came back normal.
I don't have anxiety and I'm sensitive about people not believing me because the first time I had Chronic Lyme, nobody believed me and people thought I was making it up for attention.
The suggestion that it's anxiety makes it sound like he's saying that the problem isn't real, or that he's undermining the problem.
I'm also emotional because I went through all that testing and the doctor can't help me. It's hard living this way and I need help. I know that this is from the Lyme and will get better with treatment. I guess I just have to hang in there until then.
Posts: 241 | From New Jersey | Registered: Jan 2015
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
What you have experienced is called ' gaslighting ' a patient.
Gaslighting happens when one person tried to convince another to second-guess their instincts and doubt their perception that something is real. Medical gaslighting happens when a health-care professional downplays of blows off your symptoms that you know you are feeling.
Uneducated doctors get away with this, especially to women. Many studies have shown men patients are believed more often than women.
Dr Brian F wrote a research paper about the clinical manifestations of anxiety, depression, and mental illnesses in T.B.I.'s patients back in 1991.
Arm yourself with knowledge.
Wear your anxiety label like a badge of honor, not a stigma. Own it proudly. It is a legitimate medical condition. Document it. It can be used for financial assistance down the road if needed.
And make sure the next time this happens ( it will), to look square into the doctor's eyes, calmly, and say, "Please don't exclude Lyme Disease as a possible underlying cause of my anxiety and psychiatric symptoms( or other symptoms present). This is not only a life-changing disease but a life-threatening disease."
Hold this helps. It's so frustrating that we have to go through this. Criminal really.
Posts: 2977 | From Florida | Registered: Nov 2016
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I don't have anxiety or any psychological issues. My heart palpitates when I stand up too fast, climb stairs, etc. These symptoms started after I got Lyme again in August. I had heart symptoms the first time I had Lyme, as well. It's the Lyme.
Posts: 241 | From New Jersey | Registered: Jan 2015
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
I'm gravitating to your post because I'm going through the same thing. I had chest pain over 4 years ago in the beginning of Lyme journey. Pots, heart palpitations, dizzy. I also wore holster moniter and ekg, everything normal. Went away with treatment.
Now its back with stabbing pain in front of heart and in shoulder blades. My left arm throbs and I'm out of breathe. Been ignoring it for 2 months. Now it's national women's heart health month and everything on t.v. started scareing me. Anxiety riddled, I finally addressed it. Last week had nuclear injection for myocardial perfusion imaging scan, cardio echocardiogram, and stress test.
They wanted to inject me with med to increase my heart rate. Anxiety set in. They said if I had problem, an antidote is always kept nearby. I refused med and with 2 painful herniated disks plowed through treadmill. AGHHHHHHHHHHHHHHHH
While no news is good news, I doubt anything will be found. They simply are not looking for spiroketes.
Newly diagnosed Babs, probably failed Bart treatment and persister Lyme combined are the culprit. Sad to think I can't even go to ER because they wouldn't be able to help me.
I should have never went off meds in summer when I was feeling good. Now I am waiting for it to go away because it did the first time, around the 3 month mark of treatment.
Hang in there.
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
I think the way to handle this the best is to go to doctors and medical people who know, and get referrals from the Lyme community for who to go to. It was such a relief to start doing that, once I got diagnosed.
Some medical people will just block us. Others I have been able to work with a little. Gotta use some logic with them. Like, when test results come back negative, explain that the tests are not picking up the indicators for the illness. That this is a bacterial illness and the tests aren't working for what we've got.
I'm wondering whether any of these professionals would be willing to chat with an ILADS doctor. Lyme disease affects the heart. So doctors should be talking with one another.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Totally understand your situation. Been there 3 years ago when I was telling that I'm losing sensation in limbs. My parents was keeping told me that I have depression and it should be treated by psychologist.
After this years it turned out that I could have Lyme disease with Bartonella that cause my "stiffnes" and pain.
But I've came trough a lot of problems by this - in school nad social life. People kept telling me "hey, everybody are tired". No one for godmn't sake didn't know how my "tired" state looked like.
I'm treating now it thanks to my old math coach who asked why I'm so sleepy on lessons and it turned she have been sick also and she knew how hard this disease can be. She said "we all look like problematic madman to others. but for me it was hell".
After this all my family feel pity for me to not understanding before why I couldn get up from bed every morning. It wasn't that I was such a lump.
(breaking up the post for easier reading for many here)
posted
Thanks so much, Chris. I'm sorry you went through that.
[ 02-25-2019, 04:36 PM: Message edited by: MissVictoria ]
Posts: 241 | From New Jersey | Registered: Jan 2015
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MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
We can understand also. We have family and friends who think it's 'all in your head' or 'just depression' and if you'd just go get antidepressants you'd be fine.
Fortunately we did find a LLMD who believed us when we finally realized it might be Lyme and went for testing.
6 years after diagnosis, there are still family & friends who don't believe or understand. We have learned not to count on them for any support. Instead spend time with those who do show support.
Our 'inner circle' of friends has totally changed from who used to be there, to who is there now.
So sorry you are having to deal with this too. It is tough. People on Lyme net will show support also. We were so glad for this!
Posts: 2248 | From USA | Registered: Aug 2011
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