Feeling down but hopeful

Posted by 143salmon @143salmon, Nov 29, 2022

Im desperate and looking for advice on doctors and what tests should I have my doctor add to the normal list.
I’m 44 female
I am considered good health but my body does get hit with random issues these days.
I’ve had to stop working and my life has been put on hold.
I need to work and I love to work. I’m a bit of an A personality type but more about helping people and getting stuff done to add value to my clients. Being stationary is a major shift.

Past issues
Gallbladder out at 30, uterine polyps at 40
Anemia
lack of Vitamin D
skin infections that don’t heal easily
Acetine Chelitis a lot and cold sores
many ear or viral infections.
2018- A tick in me for 24 hours but took antibiotics. Threw the antibiotics up 1 hour later, doc said it was fine.
Dehydration even when I drink pedialite
Crave sugar and salt but now after a recent appendix removal and major antibiotics, my cravings decreased. My diet is mainly Whole Foods with a snack or cheese here and there.

The last three years turned upside down:
debilitating brain fog
Difficulty with quick responses and my patience is low.
Pelvic pressure at times.
Pressure in my brain or skull. I wear an ice pack under my beanie and it helps.
Crackling in my head like rice crispies.
I have apathy or disinterest in motivating myself to do things but i don’t feel chronically depressed from all this. I feel frustrated and worried.
I don’t have energy to do stuff, like read emails, focus or have energy to reply. Same with phone calls and texts. I used to be t the queen of get crap done!
Buzzing or tingling in limbs like electrical currents, mainly legs.
Sometimes restless legs at night.
cramping or weak hands I now call the claw, lol
Two ear infections in two years that were insanely painful and one required antibiotics.
I take an SSRI and studies show it messes with your gut biomes.

Ugh where to start? My GP is great but he seems confused too.

Help please

Been diagnosed with IBS. Since my appendicitis in sept. my bowl movements have been varied.

I started running daily for 10-20 minutes and it helps my energy a bit but not cognition or the pulsing legs.

Antibiotics always make me feel ‘normal’ for a week after use but I can’t take them often for my overall health.

I tested positive for H1-b27 but I don’t have symptoms so I think it’s a latent thing or false positive.

My doc thinks it’s an autoimmune disease or an infection.

Could be
MS
Adrenal fatigue
Diabetes 2?
Lyme disease
Infections or bacterial or maybe a parasite?
CFS or ME
Or who knows.

All my test come back normal but it’s pretty clear something is not working with my body. It seems I can’t control my own bodies feeling.

I meet a generic ruhmotologist (spelled incorrectly I know) in February but feel I can’t wait or my mental health will suffer.

I need a doctor that hears a rainbow of symptoms and looks at things like bacterial or fungal infections or nervous system or hormonal issues. Someone curious and kind.

I feel like a worthless person sitting and doing nothing these days. I didn’t have insurance for two months and now bills are stacked up. Insurance starts 01.23 so I’ll go crazy on tests then.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Go to a functional doctor and get checked for lyme disease and mold toxicity.

Western medicine doesn't do well with these health issues.

REPLY

If you feel better on antibiotics, then you have empirical proof that one aspect of your disability is a bacterial or "X" infection that is susceptible. Before I started infusing Hizentra in 2014 for a severely impaired immune system, the multiple infections I harbored defied most antbiotics. Sulfa was the last effective infection fighter, prescribed for a sinus infection that had spread throughout the sinuses in my head to my ears and chest. Doc said, "Stay on the meds until you are out of the woods." I was more than willing to comply. I wonder if your situation may be similar in that your body is not dealing effectively with your pathogens without medical help. If so, you may need to stay on the antibioics until your infection is adequately suppressed so it doesn't flare again when the antibiotics are removed. Have you changed your diet or taken supplements that support and strengthen your immune response? All the best for finding answers and healing.

REPLY

@143salmon, I know the wait is hard, but it sounds like you and your GP have decided on a good next step to see a rheumatologist. have you considered going to a large medical center like Mayo Clinic where you may be seen by multiple disciplines?

You might also be interested in this discussion:
– Chronic Illnesses of Millions of Women Left Untreated: https://connect.mayoclinic.org/discussion/chronic-illnesses-of-millions-of-women-left-untreated/

REPLY

@143salmon I’m not a doctor, but by the list of your symptoms it sounds like you have fibromyalgia. I had all those symptoms and for years was told it was all in my head and that I needed to see a psychiatrist. I finally found one doctor who zeroed in on the problem and sent me to a rheumatologist because she suspected fibromyalgia – and she was right.

REPLY
@gillysmom

If you feel better on antibiotics, then you have empirical proof that one aspect of your disability is a bacterial or "X" infection that is susceptible. Before I started infusing Hizentra in 2014 for a severely impaired immune system, the multiple infections I harbored defied most antbiotics. Sulfa was the last effective infection fighter, prescribed for a sinus infection that had spread throughout the sinuses in my head to my ears and chest. Doc said, "Stay on the meds until you are out of the woods." I was more than willing to comply. I wonder if your situation may be similar in that your body is not dealing effectively with your pathogens without medical help. If so, you may need to stay on the antibioics until your infection is adequately suppressed so it doesn't flare again when the antibiotics are removed. Have you changed your diet or taken supplements that support and strengthen your immune response? All the best for finding answers and healing.

Jump to this post

@gillysmom and @143salmon antibiotics deplete good gut bacteria so it is important to supplement with yogurt or probiotics.

REPLY
@rashida

@gillysmom and @143salmon antibiotics deplete good gut bacteria so it is important to supplement with yogurt or probiotics.

Jump to this post

I totally agree on the probiotics. Take a high quality one that is live and refrigerated. .The highest quality that you can buy at Whole Foods or Sprouts or some very good health food store. They can only help while you take antibiotics and continue to search for a solution. Welcome and please keep us posted. I don’t think that you will find a group like us that can better identify with your walk and frustrations. God bless.

REPLY

Thanks I’ve been taking pre and pro biotics since on both rounds of antibiotics so I’m thankfully ahead of the curve on that one. No sugar and high veg protein Whole Foods diet now. Been a shift but it’s the new chapter of my life 🙂

REPLY

I'm feeling the same way, down but hopeful. Feel better soon!:)

REPLY

Have you been screened for Mast Cell Activation Syndrome?…..their protocols could help you immensely. Check out Beth O’Hara on line and Becky Campbell. They both have helped me immensely and provide the supplements that righted my off balance chemistry. I was hugely reactive to onslaught of inflammation after my covid shots. There are many out there w MCAS and it’s co-morbid conditions so I would check that out. Not to mention emotional support and books of information. I also take Valtrex daily to keep all canker sores and possibly viral issues at bay. Before going on protocols for MCAS I too only felt better with the too- occasional….antibiotics. I haven’t needed a dose in a long time. It has to be due to eating completely differently for Mast Cell. There is a huge community out there to help you!! Good luck!

REPLY
@143salmon

Thanks I’ve been taking pre and pro biotics since on both rounds of antibiotics so I’m thankfully ahead of the curve on that one. No sugar and high veg protein Whole Foods diet now. Been a shift but it’s the new chapter of my life 🙂

Jump to this post

Any positve results from changng your diet? I had so many severe problems that at first my progress was difficult to acknowledge, but it is happening in small, critical gains. When I acknowledge my true gains in strength, mental clarity, overcomng SOB, understandng possible healng paths, etc., I'm focussing on healing vs. frustration and despair. My sense is, as long as you can benefit from the antibotic treatments, keep after your docs to ID the infecting bodily processes/pathogen. Seems like your docs are dong good work. And so are you.

REPLY
Please sign in or register to post a reply.