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I’m sorry to hear about your pain and the notion that the medical community has given; that your incurable.

I’ve read some literature on this disease and have know people who’ve had it.

Medicine often gives people the impression they are absolute authorities despite new knowledge being gained every day. This is called hubris. You want this gusto in a trauma surgeon or cardiac surgeon - with an unflappable confidence in the moment. Other than that these folks need the endless questioning of why and they can afford that but we don’t profit by taking our time with patients. It’s sad and I’m sorry. Know there are people who are trying to change this.

This gentleman had a podcast with Ben greenfield and discussed IC. You’ll have to fin the podcast.

https://www.bioresetmedical.com/

The other doctor is frank shallenberg with is practicing medicine with a focus on ozone therapy. Technically ozone therapy can be done at home. You could do this at home if you can’t find a doctor to treat you. It would cost under $1000 but you’d own all the supplies and if it ever returned could treat it immediately. Velio bocci also is a doc but in Italy i think. He’s put out what would constitute as a medical text book for doctors on Ozone therapy. Read the latest addition and the guy is brilliant. He’s asking questions the USA doctors aren’t, partly because he’s university he’s tenured with sanctions his practices.

https://www.antiagingmedicine.com/staff/frank-shallenberger/

The how to book essentially: https://www.amazon.com/Principles-Applications-ozone-therapy-physicians/dp/145641335X/ref=mp_s_a_1_1?keywords=ozone+therapy&qid=1572109360&s=books&sr=1-1

Velio s work: https://www.amazon.com/OZONE-medical-drug-Velio-Bocci-ebook/dp/B008CM4SEC/ref=mp_s_a_1_12?keywords=ozone+therapy&qid=1572109360&s=books&sr=1-12


A listing site for ozone doctors: https://aaot.us/default.aspx

Also you can look at ACAM. These guys do chelation therapy which is almost as equally controversial, just less known.


Always make sure products are sterile, hand hygiene is observed by the doctor and proper cleaning is done of the urethra if you decide to do this. This means sterile gloves and providine is used. I’ve been victim to lazy doctors and don’t want you to be as well. I’m not a doctor or and this doesn’t constitute as medical advice FYI. Don’t give up hope.

That sounds REALLY TOUGH, OP. <3<3.

It's so hard to find out how little doctors actually know about how our bodies work. In my own experience, it DOES NOT HELP to get caught up in intertnet controversies about what diagnoses are real and what treatments are legit.

If you find a naturopath that HELPS you, does it matter if your PCP thinks they are a quack? Same with treatment. If you find out that some out there treatment really improves your quality of life, does it really matter if other people think it's out there?

If you're looking for resources (and it's ok if you're not and just wanted to vent!) Then I really recommend the book Why Can't I Get Better. It's written by an MD about chronic Lyme and all of the overlapping things that cause symptoms and made it so hard for many doctors to even recognize that you are sick. It can get pretty dense/technical in places, but there are also a lot of anecdotes that will hopefully help you feel a lot less crazy.

You aren't crazy. You're just finding the limits of modern medicine a lot sooner than most people do.

i recommend a cane with elbow support-that being said here is a link to a few cute ones!

https://www.amazon.com/dp/B01L0SN5EI/ref=cm_sw_r_cp_api_i_ytCUCbTTEMYWB

Do you have any other symptoms? Maybe check out ME/CFS and see if it sounds like you. You can’t just have fatigue to have it there’s a checklist of symptoms to make a diagnosis but there isn’t a bio marker or diagnostic test that’s widely used yet

http://www.treatmentcenterforcfs.com/documents/mecfstreatmentresourceguideforpractitioners.pdf

https://www.cdc.gov/me-cfs/index.html

http://solvecfs.org/wp-content/uploads/2018/01/SMCI_infographic-Dec2017.pdf

https://www.amazon.com/dp/0897932803/ref=cm_sw_r_cp_api_bOIxBb3163914

https://katarinabrandt.wordpress.com/2018/03/25/helping-me-helps-all-of-us/

https://www.meaction.net/resources/reports-and-fact-sheets/

Omg both of those are my issues too! My medicines for PH cause horrible sinus issues & the dry air on my tanks make it worse, even if I’m out for only an hour. My cats love my tubes & I kept stepping on them, so I finally wrapped my 50’ green tube in split flex tube (Dorman 86632 Black 3/8" x 100' Wire Conduit Flex Split https://www.amazon.com/dp/B002H97L4U?ref=yo_pop_ma_swf) & it doesn’t twist up anymore.