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Complex Patient seeking answers
Hi! I’m new to the group so thought I’d introduce myself and my story. I tried to do the short version but it is a novel & I apologize for that… I’m always open to constructive feedback.
I am the odd person whose labs are normally great. Even when my joints are visibly tight/swollen my inflammatory markers are negative.
I have worked as a RN for the last 15 years but finally waived the surrender flag and resigned effective 12-2-2021 so to feeling progressively unwell and unsafe.
Back story & Timeline
*Diagnosed late 1990s with Hashimoto’s and subsequently had 3 subtotal thyroidectomies.
*Approx 2000 diagnosed with RA. I currently use Humira & Methotrexate weekly.
*Diagnosed Idiopathic Hypersomnia & Chronic Fatigue Syndrome approx 2009 though I had symptoms much longer.
*Summer 2019 I got Parvo (not the human kind) at work.
*March 2020 I suspect I had COVID but they would not test me.
*Oct 2020 - COVID positive. I never returned to my baseline
*2-2021 I was emailing my Dr telling him I didn’t know how long in could keep going.
*7-2021 I started getting blurry vision in both eyes which was intermittent. It was blamed on stress, too much time starting at the computer for work, and my thyroid.
*Fall 2021 Memory went downhill, temper got short, I went for organized clean freak who could have 20 guests without flinching to a house that is a jumbled mess and I don’t want my mom coming over. I developed anxiety, etc..
*Sept 2021 Things had continued to get worse. Dr ran a bunch of labs. Positive for CMV (cytomegalovirus) and had a positive ASO (200). Went on doxycycline for a month.
*Nov 2021 tendered my resignation from a career I love and miss. I was doing the head nod at stop lights, brain fog had gotten so bad I was telling my kids to put trash in the refrigerator, and I feared I would end up causing harm to myself or a patient. Dr agreed and told me to apply for social security. He also bounced me back to the rheumatologist thinking it was related to my RA. Rheumatologist bounced me back saying it was my thyroid.
*Dec 2021- Rechecked ASO and it had more than doubled to over 400 (not good) but no one seemed concerned.
-Started to get intermittent periorbital edema which, again, was blamed on thyroid.
*Jan 2022 Diagnosed with Sjogren’s and Raynaud’s.
*Feb 2022 Started to have swelling in both legs equally to the point I had to get stretchy pants and can’t wear my normal socks- not edema. Feels like it is muscular. Also Started to have some balance issues that were attributed to the fatigue.
* Feb 2022 Increased right wrist pain (previously have had 2 surgeries on the hand and wrist). Steroid injection done but didn’t help for long. CT showed torn ligaments; no idea how or when.
*March 2022- Started to have pain from the hips down, intermittent at first then most of the time. Searing pain that is like my muscle tissue has been shredded. Sometimes it is so bad my husband has to help me change position. Again, blamed on thyroid.
*May 2022 Distal ulna radius joint replacement due to no improvement in wrist. Hardware started to come loose after just 3 months and there is hypertrophic bone growth on the lateral side. 2 doctors have said I will never recover and will never be able to work as an RN again. I can only write or type a few words before having to stop.
* May 2022 Primary care doctor put in referral to Mayo.
*June 2022 - Mayo, AZ - I saw rheumatologist, endocrinologist, & neurologist. Chest CT & labs done.
* Only abnormal labs were CCP & ANA (due to RA), slightly elevated SCL-100, and MOG titer 1:100.
-CT also had small nodules which did not exist 12-2019. I had to wait to schedule MRIs until after insurance approved. -At follow-up pulmonologist was not worried at all and said to just have another scan in a year to evaluate.
-End of July the pain has changed from the hips down to the shoulder blades down. It was relentless. If I bendy over it was far worse. I barely gotten slept as I could not get comfortable. My Dr gave me good pain meds but they did nothing at all. I also started to get hot easily (usually cold) and break into a sweat using the bathroom.
-Pain went back to just the hips down after about 3 weeks, but the sweat/easily overheated remained.
-MRIs were negative, neurologist blew me off at follow up. He said the MOG 1:100 was a fluke due to overall levels of inflammation, even though CRP and ESR are negative.
-Mayo Rochester declined to see me since Arizona cleared me.
-I’m waiting to see if the specialist and Boston accepts the referral my local Dr sent.
-I am now mostly couch bound and am issuing a transport wheelchair for any distances over about 200 feet.
*Sept Stopped Humira (TNF inhibitor) & started new med Rinvoq (JAK inhibitor). Developed acne-like lesions of scalp, neck, chest, & breast leading to infection & multiple visibly swollen lymph nodes. Doxycycline taken for 2 weeks. Stopped Rinvoq med after 1 month with slowly resolving symptoms. Still on methotrexate.
**As of 10-30-2022 symptoms include
-Brain fog, inability to focus
-Mood changes & anxiety
-Unable to find words or use wrong words
-Worsened fatigue
-Pain, swelling, cramping from the hips down. Muscles feel tight.
-Severe dry eye unrelieved by restasis & severe dry mouth/tongue with several episodes of thrush & sores
-Urinary hesitancy & constipation (no pain meds in over 3 weeks)
-Raynaud’s
-Intermittent mottling and paling of various parts of the body (shoulder blade, legs, chest, arm)
-Intermittent burning sensation of the right shoulder. It is worse when anything touched it. There is no swelling or physical indicator for cause.
-Joint pain & swelling
-Vaginal dryness and difficulty achieving orgasm.
-Assistance often needed for position change, dressing, bathing, & shaving, opening bottles.
-Assistance almost always for transportation
-Assistance always needed for meal prep, cutting meat, paperwork, grocery shopping, cleaning, medication reminders, appointment reminders
🤦🏽♀️ wow! That was long & I even left some tons out! If you made it to the end, Thank you! I would love to hear your feedback.
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So sorry, I was wondering if infusion of human antibodies could be of help?
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1 ReactionWhat is your diet? Have your docs chased down any food insensitiiiiiiiivities throu blood test? Have you tried to lower inflammation through diet? Have you had a recent endocrine workup? Thyroid, adrenal? What is vitamin-mineral status? (B12, D, E, ferritin? Your history leaves out what has worked for you and what you have tried personally that doesn't seem to work. Have you been checked for EBV antibodies? The resurgence of EBV followingCovid could account for continung declne and autoimmune activaton. I feel for your suffering and frustration, and prsy you find answers and healng soon.
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4 ReactionsGet checked for mold right away. Your body could be colonized, or you could be exposed to mold mycotoxins or both.
Lyme disease is also a strong possibility. Do a blood test, but not the standard antibody test. There is a test that looks at several other blood markers.
Western medicine doesn't know anything about what I just said. Many people get diagnosed with chronic fatigue or fibromyalga not knowing mold is the root cause. You need to find a naturopathic doctor who is literate in mold. If they are literate in mold, they are usually also literate in Lyme. Most naturopathic doctors are only interested in weight loss and eating healthy (which is great) but some are more specialized in mold and Lyme.
Remember, western medicine knows nothing of mold mycotoxins or indirect detection of Lyme disease or parasites... Literally nothing. I know you're an RN, and this is not an attack on you or the doctors you work with.
http://Www.drjockers.com has great info and you can order a urine test to check for mold mycotoxins. I would do this ASAP. You will not get results for nearly a month, which is a bummer.
https://drcrista.com is a leading mold doctor. She has a symptom checker on her website, check it out.
Dr Neil Nathan is a leading mold doctor
Dr crista and Nathan have links on their websites to mold literate doctors. They both have also written books on mold sickness and how to heal.
https://sponauglewellness.com has treated many with your symptoms.
https://drwillcole.com is also very literate in mold. You can schedule a Skype meeting with a representative, and they can help you with all needed testing. They can also get you tested for mycotoxins.
Your case sounds like classic mold. I have been battling mold, and I'm no doctor, but you must rule it out.
Also get your home checked by a certified mold inspector.
If your home has had any water damage, is very old, or is fairly new without an air handler, I would move out right away and stay away until you get a diagnosis one way or the other. Buy new clothes to be on the safe side. Take nothing with you for now.
Take NOTHING with you.
https://www.themichaelrubino.com is an expert on toxic mold in homes
Hope this helps. I'm not trying to be alarmist, but mold is much more common than most realize. The problem is that only 24% of people have trouble detoxing the mycotoxin mold produces. This means your entire family could have no symptoms while you're on your death bed.
I know it seems like I jumped to conclusions, but you must rule it out as soon as possible.
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2 ReactionsThanks for the links. We have tested for, and ruled out, mold.
Vitamin levels are all WNL, I have seen 5 physicians and asked about EBV, tick, & mosquito illness but none have bothered to run tests. They have also not done a spinal tap.
Nothing has seemed to work and I had to leave my career as an RN almost a year ago due to my decline.
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1 ReactionI had a similar lack of diagnosis and support, but after the Moderna 1 vax, i went from an 80's person who looked middle aged to a bed-ridden old person. For the first time in my life, I looked my age and was disabled. So I joined groups like Mayo Connect, Stuff that Works, Facebook;s AIP, Neuro V Long-Haulers, and tried my best to understand what was causing my decline. I concludud that I had reactivated EBV and I diagnosed my new extreme leg weakness as either RA or undifferentiated connective tissue disease, different from the diagnosis of my rheumatologist, who ignored my history of 3 past autoimmune diseases, and whose determination of no inflammation was not helpful or cosistent with my history or high ANA titer. Too sick to fight with doc, I became a compulsive researcher. Plateaued out of a weakening body and overcame shortnee of breath with an herbal protocol. I read every post from group members that might have a remote bearing on my condition. I checked out their doc's recomendations, and have a growing herbal pharmacy. several items of which have been helpful. My question is what can YOU do that might be helpful or you?
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1 ReactionLYME has 5 coinfections. My son had one that his primary missed. Fortunately the second doc knew coinfections, treated effectively, and post tested for successful treatment and elimination of the bacterial infection. Otherwise, serious consequences to blood. It would help to find a Lyme savvy doc to rule out lyme and its coinfections.
What a tale of woe. The tough part is losing independence as you get sicker and weaker. What would worry me is how you are getting sicker and sicker. Perhaps an indication that the cause of your illnesses is still hidden. If it were I, I would keep checking for an source: EBV. Lyme. Lyme coinfections, Cytomega. virus, high ANA, mineral panel, reactivated Hashimotos, Blood test for food sensitivities. Also join Facebook AIP diet, an elimination diet that really helps to control inflammation. Another Fb group, Covid Long-Haulers. All the best for clarity, support, and healing.
Wow
It is great that you have documented all symptoms. I hope you are feeling a little better. Not sure how to process all you have been through. I had tears in my eyes reading your struggle.
I have RA, asthma, allergies, Hip Dysplasia, Total hip replacement on each hip, Idiopathic Hypersomnia, fatigue, brain fog, forgetting words, and everything aches and hurts, and low ferritin, my body does not absorb iron supplements.
Aut
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1 ReactionPlease have your B12 and B3 (niacin) levels checked.
I have been battling with B deficiency since 2013 even with daily injections I can't get it to normal.
Symptoms you have described are consistent along with Sjogrens. I would also ask to be checked for ankylosis spondylitis which is a autoimmune disease of the muscle, joints.
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