Lack of Support Lyme RANT!!

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Rare Squirrel
Regular Member


Date Joined May 2018
Total Posts : 38
   Posted 5/10/2018 5:43 PM (GMT -6)   
WARNING No holds barred...this rant is not for the feint of heart and I'm not trying to upset anyone!

People with cancer*(see below) get all kinds of support. Everyone knows how awful chemo is and there are all kinds of supportive therapies to make them as comfortable as possible and pain meds flow like water. But when you have Lyme and Mycoplasma and whatever other co-infections... doctors turn their backs on us? WHY??? When these are painful debilitating conditions and treatments have been compared to chemo in how they make us feel AND can last months or years...why don't we get the same level of support? When SUICIDE is the biggest cause of death for people with Lyme...why isn't anyone reaching out to offer supportive therapies that could make the difference between us living or dying? I've screamed, cried, sobbed, raged, thrown things, destroyed the house over all of this complete BS and yet I'm still stuck facing either a life not treating it and continuing to decline and feeling worse every day, or a life mandated by whatever treatment protocol I've decided is the least of all horrors, feeling even more worse every day but hoping that someday maybe months or years down the road, I will actually start feeling better...but never healed so this monster will be with me forever and it's going to be a lifelong battle to keep it in remission (if it's possible to achieve in the first place)...also knowing that all the memory I have lost may never return, the neurological symptoms may never completely go away, and there's a good possibility I will never feel well enough to attempt to make any of my hopes or dreams come true. Not to mention that I somehow won the genetic jackpot of genes like the MTHFR (whoever came up with that abbreviation is a genius btw) which already means I can't handle stress, multiple COMT genetic mutations that all point to increased sensitivity to pain (I was born hypersensitive and now I have a disease that makes me even more sensitive...so to say I'm now hyper-hypersensitive to everything is an understatement), and even the CBS mutation which makes detox that much more difficult! Not to mention all the increased chance of cancer, heart problems, diabetes (already had type 2 diabetes before my weight loss), stroke, early onset Alzheimer's, increased risk of side effects from medications, severe risk of intestinal bleeding from NSAIDS types of genes and more. And having Celiac disease, narcolepsy/hypersomnia/sleep apnea, severe ADD and emotional issues, which aside from the Celiac, I have had since my childhood or teens (where I was raised on antibiotics due to constant ear infections, subjected to repeated ear tube placements, a tonsillectomy, 2 adenoidectomies since not only did they grow back but also doubled (we recently discovered they are actually back again) AND hormone problems leading to extreme weight gain and other problems) before I even contracted Lyme!

WOW... where do I sign up? Which doctors do I thank for putting me in this complete lack of support position? I'd help fight the CDC for their role in the Lyme controversy and stand up for chronic pain patients rights to relief in the war on opioids ...but I'm so completely exhausted that most days I can barely even stand up at all!

How are we expected to get through this? Whyare we expected to go through this? I swear if I hear 'you just have to tough it out' I'm going to end up behind bars for homicide! We have more compassion for suffering animals than we do for suffering humans! Where's the fight for the inhumane treatment of humans?

Why is it ok for someone with cancer to say they can't handle treatment and everyone accepts and understands it and as sad as it is, will let them go, as they get all kinds of palliative care and even (in states that it's legal) can choose to peacefully end things early? But it's not ok for those of us that may even be suffering much more than someone with cancer, to give up and want to end it all because they truly can't handle what they are being put through? I know part of it is because Lyme disease doesn't give you a time line like cancers where if you don't treat it you have approximately XX amount of time to live. But it seriously feels inhumane and cruel to be forced through this, whether you treat or don't, regardless of the treatment option you choose. And this applies to other disease as well! Alzheimer's for instance...once diagnosed with it, your rights to die are taken away because suddenly you aren't considered of sound mind, so you are forced to go through the whole process knowing everyone around you is going to watch you slowly deteriorate before you go. MS isn't considered fatal so you are forced to go through all of that too... although at least with those there is plenty of supportive care offered.

No one other than those of us who have been personally affected with (or have watched a loved one affected by) Lyme and/or Mycoplasma and/or any of the number of other co-infections can really understand the devastation of the disease/s. If you tell someone it's treated with antibiotics, they compare it to a case of strep throat. If you tell them it's more serious than that and sometimes even needs IV antibiotics, they still see that as a cure because that's how we were raised to think, that antibiotics kill all infections. And then this part is really fun... if you tell them you are using alternative treatments and seeing a Naturopath, suddenly it's not a serious seeming disease at all because if it was you'd be seeing "real" doctors or be treated in a hospital with "real" medicine. And if that's the case than there's no real need for a strong support system, right?

[insert scream and rage]

My life went from kinda sucks with conditions I'm dealing with, to omg this sucks with the Celiac diagnosis, to OMG I hate my life with the addition of the Lyme, Mycoplasma and other infections to OMG I CAN'T TAKE THIS LIFE ANYMORE AND WHAT IS WRONG WITH THIS WORLD AND THESE TREATMENTS?!?!?!

Thank you time a bazillion for being here and all the advice because I am honestly not sure I'd still be here had I not found this board!

* I am in NO way saying Cancer isn't bad or attempting to compare the horror between Lyme and Cancer diagnoses and I completely agree that it is a horrible disease that takes far too many lives and wouldn't wish it on anyone. I am simply using it as a comparison for how those with each disease seem to be treated so please don't misunderstand my intentions!

Hey, could we keep this thread up for all of us who need a place to vent or rant like this? I hope I didn't offend anyone or break any rules or that there was something else I should have read first because honestly I've read so much my head wants to explode and can't remember about 3/4 of it anyway!

Donjr
Regular Member


Date Joined Apr 2018
Total Posts : 187
   Posted 5/10/2018 9:21 PM (GMT -6)   
You need to email this to all congress pres and senate along with cdc nih

Rare Squirrel
Regular Member


Date Joined May 2018
Total Posts : 38
   Posted 5/10/2018 10:47 PM (GMT -6)   
It should be blasted in their faces for sure! Feel free to pass it along, quote it or send it to anyone anywhere anytime. I'm way too tired to figure out where to send it or look up addresses and it just seems so pointless as one letter or email among the zillion they get, but if you want to get me some addresses, I'll do my best to send it! I'm just completely infuriated by these ignorant compassion-less bureaucrats!

mpost
Veteran Member


Date Joined Feb 2015
Total Posts : 1527
   Posted 5/10/2018 11:13 PM (GMT -6)   
well people don't normally die of lyme.... so guess what ... no support for you! Welcome to Planet Earth sad

people most certainly die of AIDS, yet this is what it took to raise awareness, this taken from AIDS protests in 80s
/www.youtube.com/watch?v=5-QWSbaeGL0

notice they are MANY, and they seem quite angry and committed...

yet when i hear about a lyme NIH walkout, i hear only 50-100 people went...

well why is that? who do u think will take you seriously if you do not make your voices heard? you think CDC reads healingwell ?!

ranting is admirable and i support u, and it does help physiologically. i have been doing same in a few posts during the years.... but this will not change one single bit of reality. if u really want to do something, and u are able physically, you feel outraged by the way this disease is handled, go to a lyme protest next time it is announced...

if you happen to have a lot of money, donate some to a lyme foundation, to help research and activism. There are many, GLA, Bay Area, etc....

i know u are in pain, we all are on this forum, do not get me wrong... i KNOW how real this is. i was not able to sleep last night because of leg pain... probably neuro damage in the nerves on my right leg...

Rare Squirrel
Regular Member


Date Joined May 2018
Total Posts : 38
   Posted 5/11/2018 6:12 PM (GMT -6)   
With so many affected by Lyme too exhausted and mentally scattered by the ravages of Lyme that it's a struggle just to make it through their day...the small number doesn't surprise me. How do we get more people to act on our behalf while in a painful fogged out disorganized haze?

I do plan to do all I am ABLE to do to help push sense into the senseless but it sure feels like trying to knock down a brick wall with a feather!
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