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Still trying to decide on Mayo - I feel too sick to get well

Posted by backyarder1 @backyarder1, Mar 25, 2019

I am UN-well enough that I really don't have a normal life and no local doctors can find answers for me. I have a lot of fatigue and weakness and my brain just feels like it is full of cotton or something - I can't think clearly. I have various pains in my body, but none severe. Mainly it is just weakness and fatigue and not being able to think. Doctors have tried various blood tests and some CT scans, etc. but since they don't have any idea what they are looking for, they don't seem to be finding it. I know that I have various virus antibodies in my body such as EBV, CMV, HSV and possibly lyme disease (depending on what doctor you talk to). My latest pain, which I have told several doctors, is that it feels like I was kicked in between the legs. Of course, a lot of my "holistic" friends have suggestions like Lyme disease or Mold toxicity or overall candida but traditional doctors don't seem to want to listen to those ideas.

One of my additional problems is that I am so weak, or maybe its just because my body is so sensitive, I can't tolerate most medicines and I can't really drive very far.

If I go to Mayo, do they do a test and then just send you back to your hotel to recover? I don't have anyone to go with me for tests so first of all, I need to get transportation. But I also feel like I need to be in a supervised setting for recovery, etc. Which means I will probably have to hire a nurse or some sort of caregiver to go with me. I'm only 63.

I Sooooo wish i didn't have to make the drive and go through the additional stress of having to travel to get well. But if I'm NEVER going to get well, I need to make arrangements for my future. I need to hire caregivers, etc. So I need some answers.

Anyway, I'm at a loss. I want to talk to my doctor one more time but I really don't think she believes that there is really anything wrong with me.

Interested in more discussions like this? Go to the Visiting Mayo Clinic Support Group.

lillybet | @lillybet | Mar 5, 2020

backyarder1
I too have similar issues. Doctors think I’m crazy when I tell them what’s happening with me since I moved 7 months ago. I know there’s mold. I can’t afford to move. I have Trigeminal Nueralgia, 6 years now. Doctors and family tell me since my cranial nerves are compressed it’s compromising my thoughts. I’m not the crazy one but if they lived through this they’d tell a different story. I love to research.
It’s taken me 6-7 hours each day till I finally came across something today. There’s nothing it don’t talk about that I don’t suffer. Explains every detail of what’s wrong. I’ve literally wished I were just crazy. If I knew I was crazy I’d feel better. At least I’d have a answer. To say the least I’m glad I’m not crazy now because I finally found the answer.
I don’t know if I’m allowed to insert the link to the findings.
whatmoldtoxicityfeelslike Look this up online. I hope it takes you to that article. If not is there another way to contact you?

Thank you Page admin for the prompt message letting me know I couldn’t post a link.

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1 reply
backyarder1 | @backyarder1 | Mar 5, 2020

Hi Lillybet. Did you get some of those answers from the Mayo clinic or just on your own? Are you going to go to Mayo?

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 5, 2020
In reply to @lillybet "backyarder1 I too have similar issues. Doctors think I’m crazy when I tell them what’s happening..." + (show)
@lillybet

backyarder1
I too have similar issues. Doctors think I’m crazy when I tell them what’s happening with me since I moved 7 months ago. I know there’s mold. I can’t afford to move. I have Trigeminal Nueralgia, 6 years now. Doctors and family tell me since my cranial nerves are compressed it’s compromising my thoughts. I’m not the crazy one but if they lived through this they’d tell a different story. I love to research.
It’s taken me 6-7 hours each day till I finally came across something today. There’s nothing it don’t talk about that I don’t suffer. Explains every detail of what’s wrong. I’ve literally wished I were just crazy. If I knew I was crazy I’d feel better. At least I’d have a answer. To say the least I’m glad I’m not crazy now because I finally found the answer.
I don’t know if I’m allowed to insert the link to the findings.
whatmoldtoxicityfeelslike Look this up online. I hope it takes you to that article. If not is there another way to contact you?

Thank you Page admin for the prompt message letting me know I couldn’t post a link.

Jump to this post

Hi @lillybet welcome to Mayo Clinic Connect. I see that you wanted to post a link to your post above. New members are not able to post web links for a few days. We do this to protect the community from spammers, i.e., people who join only to post links to sell something, etc. Clearly the link you wished to share is not spam. Please allow me to post the link for you.

- What Mold Toxicity feels like, from symptoms to shame. https://pjharlowwellness.com/blog/whatmoldtoxicityfeelslike

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2 replies
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Mar 5, 2020
In reply to @colleenyoung "Hi @lillybet welcome to Mayo Clinic Connect. I see that you wanted to post a link..." + (show)
@colleenyoung

Hi @lillybet welcome to Mayo Clinic Connect. I see that you wanted to post a link to your post above. New members are not able to post web links for a few days. We do this to protect the community from spammers, i.e., people who join only to post links to sell something, etc. Clearly the link you wished to share is not spam. Please allow me to post the link for you.

- What Mold Toxicity feels like, from symptoms to shame. https://pjharlowwellness.com/blog/whatmoldtoxicityfeelslike

Jump to this post

@lillybet @backyarder1 I see a doctor who is a functional medical physician, or environmental medicine specialty. He told me that the doctor who pioneered this field of medicine started this practice in Dallas, and the practice continues even though he has passed. They do sell some medical volumes for physicians. You might be able to find information here. https://www.ehcd.com/ They do treat mold toxicity and immune problems from surgical implants.

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lillybet | @lillybet | Mar 6, 2020
In reply to @backyarder1 "Hi Lillybet. Did you get some of those answers from the Mayo clinic or just on..." + (show)
@backyarder1

Hi Lillybet. Did you get some of those answers from the Mayo clinic or just on your own? Are you going to go to Mayo?

Jump to this post

On my own. I realized years ago we have to be our own advocate. I’m not suggesting all doctors, it just seems ones I’ve been to think I’m cray and hand me the bill.
I had problems finding answers knowing I know how to research. I got so frustrated due to finding the same things just worded differently till the other day. I clicked on a link out of nowhere. When I read the ladies story and continued to follow her blog I was happier at that moment but also cried.

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1 reply
lillybet | @lillybet | Mar 6, 2020
In reply to @colleenyoung "Hi @lillybet welcome to Mayo Clinic Connect. I see that you wanted to post a link..." + (show)
@colleenyoung

Hi @lillybet welcome to Mayo Clinic Connect. I see that you wanted to post a link to your post above. New members are not able to post web links for a few days. We do this to protect the community from spammers, i.e., people who join only to post links to sell something, etc. Clearly the link you wished to share is not spam. Please allow me to post the link for you.

- What Mold Toxicity feels like, from symptoms to shame. https://pjharlowwellness.com/blog/whatmoldtoxicityfeelslike

Jump to this post

Thank you. I run two pages and four groups so I knew not to.

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backyarder1 | @backyarder1 | Mar 6, 2020

I haven't read the whole blog post but there is a very good book called Toxic by Neil Nathan that might be helpful to you. I honestly feel like I have been sick my whole life although for most of my life, I still lived a fairly normal life. I don't even know when, exactly, I started feeling worse but I kept thinking that maybe something happened to my body when I travelled across the US for three months and did a bunch of camping when in my late 20's. I thought maybe I got some strange bacteria from pooping in the woods or from drinking water from streams or something. In any case, I started getting a LOT worse about 20 years ago. Its just so frustrating. I want to find answers but I really doubt that I will get any from Mayo.

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reganripple | @reganripple | Apr 12, 2020
In reply to @lillybet "On my own. I realized years ago we have to be our own advocate. I’m not..." + (show)
@lillybet

On my own. I realized years ago we have to be our own advocate. I’m not suggesting all doctors, it just seems ones I’ve been to think I’m cray and hand me the bill.
I had problems finding answers knowing I know how to research. I got so frustrated due to finding the same things just worded differently till the other day. I clicked on a link out of nowhere. When I read the ladies story and continued to follow her blog I was happier at that moment but also cried.

Jump to this post

I am having those same issues. Body feels exhausted, gets worse with physically activity, I’ve also lost about 30 pounds in a couple months but it’s been going on for about two years. I got the same answers from the ebv test all other blood tests were fine but it’s almost impossible to work. I don’t really feel tired as much as I do weak..I’ve tried anti depressants to which none helped. If you hear anything please let me know.

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2 replies
reganripple | @reganripple | Apr 12, 2020
In reply to @reganripple "I am having those same issues. Body feels exhausted, gets worse with physically activity, I’ve also..." + (show)
@reganripple

I am having those same issues. Body feels exhausted, gets worse with physically activity, I’ve also lost about 30 pounds in a couple months but it’s been going on for about two years. I got the same answers from the ebv test all other blood tests were fine but it’s almost impossible to work. I don’t really feel tired as much as I do weak..I’ve tried anti depressants to which none helped. If you hear anything please let me know.

Jump to this post

As well as nausea

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 15, 2020
In reply to @reganripple "I am having those same issues. Body feels exhausted, gets worse with physically activity, I’ve also..." + (show)
@reganripple

I am having those same issues. Body feels exhausted, gets worse with physically activity, I’ve also lost about 30 pounds in a couple months but it’s been going on for about two years. I got the same answers from the ebv test all other blood tests were fine but it’s almost impossible to work. I don’t really feel tired as much as I do weak..I’ve tried anti depressants to which none helped. If you hear anything please let me know.

Jump to this post

Hi @reganripple-Sudden weight loss is a concerning symptom that can mean many different things. I see that several members suggest seeking help from a major medical center in this discussion that you started.

- 2 years sick, nauseous and dizzy, no answer, please help https://connect.mayoclinic.org/discussion/2-years-sick-no-answer-please-help/

I agree with that advice. If Mayo Clinic is an option for you, here is the contact information to request an appointment at any of the 3 campuses in AZ, FL or MN http://mayocl.in/1mtmR63

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