This is topic Advocate for yourself like this young woman did in forum Medical Questions at LymeNet Flash.


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Posted by hiker53 (Member # 6046) on :
 
https://www.globallymealliance.org/blog/the-night-everything-changed-my-story-from-illness-to-lyme-diagnosis?utm_campaign=E-blasts&utm_medium=email&_hsenc=p2ANqtz-_RahfqIwZVUQ6kR_p GhkmDMu9Pmr15oC4faHrHA7awhG1lIjwcWOGHt3a7lEFy-CyE3JWSRG0fKIyu9Y_U0fAM45Ucxg&_hsmi=368490428&utm_content=368490428&utm_source=hs_email
 
Posted by hopingandpraying (Member # 9256) on :
 
Oh can we ever identify with her story!!!!!!! Sounds like a copy of what my son went through and is still going through for twenty five years now [Mad] !! Myriads of diagnoses upon diagnoses including the classic one, "It's all in his head!"

An in-law on my hubby's side actually said, "It's all BS (his words, not mine!)!"

Took six years just to get a diagnosis and after years and years of all sorts of treatments and supplementation, IVs, etc., etc., he just tested high for two strains of Babesia and three of Bart (and no, he was NOT bitten again)! Not surprising he can't get rid of the chronic pain, fatigue, irregular sleep, and short-term memory problems!!

So, YES, we advocate for his - and our own healthcare - because of this and continue to do so. The picture says it all for my son with the bruised left-side of face and the comment ("Chronic illness may not look sick on the outside, but inside if you could only see the battle going on.").
 
Posted by Bartenderbonnie (Member # 49177) on :
 
Thanks for posting hiker.
I will NEVER understand how the medical community failed us.
We need to be treated like any other patient who needs medical interventions, not be dismissed.
We pray everyday to get well!

Hopingandpraying, my heart breaks for your son and your family.
If only we could wish this nightmare away.

Currently I have a mattress with a huge crater in the middle from laying in it. And after 10 years of my journey, I still have 7 doctors and an iv nurse yet continue to struggle every damn day.
 
Posted by hopingandpraying (Member # 9256) on :
 
Thanks for the post hiker53 - it really speaks volumes!

Thanks also BBonnie for your comforting words and I wish the same for you and everyone. You certainly have a lot to deal with also!
 
Posted by nature24 (Member # 52800) on :
 
wow thanks for sharing, Elizabeth has so much strength and courage, she is incredible!

bartender bonnie, what are each of your doctors for? and what IV's do you get? I'm considering doing a course so then I can do my own nutritional IVS at home
 
Posted by Bartenderbonnie (Member # 49177) on :
 
So glad you joined LymeNet nature24 💚

LymeNet is the #1 LymeNet website that archives Lyme patient’s first-hand experiences, since 1994. We are all advocates and help others to navigate this horrible disease.

My providers;

Hematologist/ Thrombocytosis

Neuro/ Neuroborrellosis

Gastroenterologist/ GERD/ Diverticulitis

Urologist/ IC Bladder

Pain Management/ Chronic Pain Syndrome

ENT/ Chronic Sinusitis $ Vertigo

Immunologist/ Primary Immune Disorder

(nurse administers iv immunotherapy monthly)

LLMD/ unable to continue due to financials, treating myself.

Dentist/ lots of problems with teeth breaking last year

Primary/ Monitors overall health

It’s hard being me, hee hee.
Stay In The Battle.
Never Give Up 💚
 
Posted by nature24 (Member # 52800) on :
 
hi bartender bonnie, thank you for your kind words and sharing that information. I'm sorry you are going through all of that, surprising to me is that I have been going through similar regarding the various diagnosis' illnesses' and multiple different types of medical professionals. sending best wishes
 
Posted by hopingandpraying (Member # 9256) on :
 
nature24 - so sorry you are going through so much.

Would you please enable private messages in your profile? I wanted to send you some information for the UK.
 
Posted by nature24 (Member # 52800) on :
 
I think I have enabled messaging
 


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