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.

One more thought about Lyme disease. M y son picked up Lyme disease after visiting his father who is a retired OB-Gyn-Cancer surgeon, who also got infected. Whch was fortunate, because his father was diagnosed with a secondary infection that frequently accompanies Lyme. When mt son failed to thrive after the first antibiotic treatment, his father kept urging him to get checked for tge second infection. It took him 2 months but he switched docs, and it was idenified. He was visiting me at the time to hlp me through post open heart surgery recouperation. He had an antibioic prescription with several weeks of treatment. The treatment ended whle he was still visiting, and he had a prescription for a blood draw to see if there was still active infection. I had been feeding him really nourishing foods, which I hoped would help his body resolve the secund infection and the blood test showed that the infection was gone. He had mentioned that before the acual diagnosis of the second bloood infection, his riary doc thought he had an incurable blood disease. The right diagnosis and treatment, with the urging of my former husband, likely saved his life. I cannot remember the name of the second infection the frequently accompanies Lyme, but your situation could be the same, especially when you have relief on antibiotics. All the best.

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@rashida

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

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My son had Lyme disease with a serious coinfection that was misdiagnosed as a blood disease. I looked up his pathogen and saw there were 4 other possible coinfection microbes. His was anaplasmosis, often missed, and missed by his primary doc. Fortunately, another doctor identified the pathogen through a blood test and treated it with antibiotics. A second blood test after the treatment confirmed that the infection had been successfully treated. He was really sick after the initial Lyme infection was treated, and misdiagnosed as a blood disorder. The other coinfections are: Lyme borreliosia, babesiosis Powarsan virus, and B niyamatoi infection. A blood test, especially for anaplasmosis, should tell you if you had a Lyme coinfection, what it is, and if it survived antibiotic treatment. The anaplasmosis bacterium can cause fatal disease. Because you feel better after antibiotic treatment, the possibility of this bacterial coinfection with Lyme makes sense to me. The correct diagnosis could be your healing path. All the best.

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@rashida

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

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Why so much unsolicited feedback folks?

I think most people with Google or who have been to a Dr know that antibiotics destroy the gut. Also, if people read the thread, they can see others felt compelled to share this 'helpful' info.
It is pretty much why Drs. don't give it out like Advil, but when you are chronicle ill or have Lyme disease, you can be prescribed it over longer periods. Personally, I would take it every few months to get a small glimmer or brain power if I could even if my gut was destroyed.

I am hoping for input on the symptoms I shared. There could possibly be a post about someone's concern about antibiotics.

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@gillysmom

My son had Lyme disease with a serious coinfection that was misdiagnosed as a blood disease. I looked up his pathogen and saw there were 4 other possible coinfection microbes. His was anaplasmosis, often missed, and missed by his primary doc. Fortunately, another doctor identified the pathogen through a blood test and treated it with antibiotics. A second blood test after the treatment confirmed that the infection had been successfully treated. He was really sick after the initial Lyme infection was treated, and misdiagnosed as a blood disorder. The other coinfections are: Lyme borreliosia, babesiosis Powarsan virus, and B niyamatoi infection. A blood test, especially for anaplasmosis, should tell you if you had a Lyme coinfection, what it is, and if it survived antibiotic treatment. The anaplasmosis bacterium can cause fatal disease. Because you feel better after antibiotic treatment, the possibility of this bacterial coinfection with Lyme makes sense to me. The correct diagnosis could be your healing path. All the best.

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This is VERYYY helpful, and I am going to take this to my Rheumatologist. Thank you!

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@douge

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

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

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Thanks! I am begging my doctor for the Lyme disease test. My worry is it has been three years since I was bit by the tick. False positives are common.

Any info on what tests pick up Lyme disease after long term infection?

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@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.

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I have thought about this as well! I know they can keep you on antibiotics for months if you have Lyme disease. My gut tells me I need to kill whatever is inside me.

Thanks for this!

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@colleenyoung

@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/

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THANK YOU FOR THIS LINK!!!! This is a major issue for women and I appreciate this link.

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@rashida

@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.

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Hi thank you so much for this info. Can I ask, what was your life like after the diagnosis? Any specific things that I can ask my Dr. to test me for so I don't have to jump through hoops to get a positive or negative diagnosis?
What did you do for cognition, immunity, and fatigue issues once you were diagnosed?

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@terrirussell

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!

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Wow never even heard of this. I have heard of Mast Cell related to cancers but I will look into this. Anything that I can share with my Dr. so I can maybe point them in some different directions then I can reduce the months of not working and be foot loose and fancy-free. I was getting cold sores and Cheilitis a lot over the last few years so this sounds familiar.

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@gillysmom

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.

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Thanks for this and for asking.
My diet changed so drastically after my appendix was removed in Sept. 2022.
I lost my appetite for so many things.
I lost so much weight and was able to detox from sugar in the hospital.
I craved it like water before the surgery.
I thought, "oh geez that is why I am feeling so horrible. now that my appendix is gone, I will be a-ok.' but that was not the case. After a week of antibiotic clarity, I was back to weak, and fatigued, with brain fog, matrix brain, leg tingles, etc.
The only thing that helped was magnesium for the leg tingles and to help me sleep.

I am so sensitive to sugar now and I loved donuts, cake, Slurpees, etc and now I cringe thinking of eating sugar. It makes my body react so horribly which is wild. I am petite and my metabolism is so high so snacks did effect my weight, but it affected my health for sure.

The bonus of not eating sugar snacks is just not being in an uncomfortable state. I do wish I could have a hostess cupcake but then get PTSD thinking of how my body will create. LOL

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