Aa
Unknown cause: Progressively worsening symptoms ~6mo
Please help with ideas, I’m running out of them myself!
To start, I’m 27yo F. Current weight is 149lbs- I lost 29-30lbs unintentionally since June 2022 (I’m 5’11)
My symptoms include:
-extreme fatigue (sleeping 12+ hrs routinely, not being able to get out of bed for 3+ hrs upon waking up). Fatigue started few days premenstrually and from Oct 2022-Dec 2022 has progressed to being around my cycle. I am using canes and a rollator and feel faint when I’m walking around stores. I can manage to stand still for ~2 mins before I feel heavy fatigued and weak
-joint and muscle pain coming and going. Mostly in my thighs (quads and hams), knees, hips, sciatica. Aching wrists more in the mid-mornings. Muscle and joint pains are almost always at night and I haven’t been able to pinpoint anything causing it (no increased exercise, weather, food, etc)
-headaches mostly in my brow bone and center-both sides of my back/top head. Gradual dull aches and throbbing/pulsating. Neuro looked into migraines but migraine meds actually make headaches worse. NSAIDs don’t help headaches only thing that does is Benadryl (it’s not allergy related-I’ve had allergies since birth so I’m VERY aware of seasonal/environmental allergies and my symptoms…this isn’t my allergy symptoms). Headaches mostly started around my period but now is throughout my cycle also
-horrible brain fog. I mean I feel like I have holes in my brain and cannot access the info anymore (think that episode of SpongeBob where his brain is burning the info-that’s how I feel). I can’t access words, thoughts, memories and it’s constantly like hitting a thick gray wall when I try
-other neuro symptoms: lack of coordination, decreased depth perception/spatial awareness, constantly slurring words and combining words/misspeaking (neuro ruled out this being migraine symptoms)
-I weighed 178lbs in June and looked the same until October. From October to currently I appear much skinnier (went from large clothes to smalls) especially around my face and neck even though I’m eating the same/more. My eyes are sunken in and I have horrible under eye bags where you can see my entire outline of my occipital area and it’s darker. Skin is pale and grayish (more so then typical winter paling)
-other: low blood pressure (87/50 to 120/60), losing hair (handfuls whenever I wash/brush my hair), bruising easily (where I never used to), reynauds, chest pain (tightness behind sternum- randomly not right after eating, dull pain intermittent throughout last couple months)
Specialists Ive seen and conditions ruled out so far:
- pcp, neuro, gyno, infectious disease, GI
-anemia (ferritin was lower side of normal, hemoglobin is normal), thyroid (t3,4, the free one all normal), vitamin d deficiency (had vitamin d def supplemented it now it’s normal), gyno said it’s not their area, neuro said it’s not neurological cause nor sleep related (ex:sleep apnea)
Test results:
-all within normal range (cbc, metabolic, protein, Ana, c-r protein, acetylcholine, musk antibody, creatinine kinese, lipid, A1c, , not hiv, ecg)
-lyme: western blot positive for bands 41 and 58 but negative overall (infectious disease doesn’t believe it’s lyme)
-sed rate is 19? So normal range but high end?
-BUN is 6 (both from today and a month ago)
-ALT is 9 (range is 10-50) month ago it was 17 (range 13-56)
-bilirubin is 1.2-1.4 but it’s been that way since high school so I think an unrelated genetic thing
-sodium is lower end of normal (138) even with having super salty foods (I was surprised it’s that low honestly)
-EBV panel was positive for all 3 types of antibodies on 2/22/23 (infectious disease doesnt think it’s a cause for concern)
Basically, I have no idea what’s going on because we’re ruling everything out..but then the general inflammation markers are all coming back normal so we don’t think it’s lupus or arthritis at least. It’s to the point I’m starting to think some sort of cancer honestly- I haven’t noticed any lumps anywhere though. GI tract is normal
Please let me know if anyone has any other ideas, I’m at a loss!! Thank you
To start, I’m 27yo F. Current weight is 149lbs- I lost 29-30lbs unintentionally since June 2022 (I’m 5’11)
My symptoms include:
-extreme fatigue (sleeping 12+ hrs routinely, not being able to get out of bed for 3+ hrs upon waking up). Fatigue started few days premenstrually and from Oct 2022-Dec 2022 has progressed to being around my cycle. I am using canes and a rollator and feel faint when I’m walking around stores. I can manage to stand still for ~2 mins before I feel heavy fatigued and weak
-joint and muscle pain coming and going. Mostly in my thighs (quads and hams), knees, hips, sciatica. Aching wrists more in the mid-mornings. Muscle and joint pains are almost always at night and I haven’t been able to pinpoint anything causing it (no increased exercise, weather, food, etc)
-headaches mostly in my brow bone and center-both sides of my back/top head. Gradual dull aches and throbbing/pulsating. Neuro looked into migraines but migraine meds actually make headaches worse. NSAIDs don’t help headaches only thing that does is Benadryl (it’s not allergy related-I’ve had allergies since birth so I’m VERY aware of seasonal/environmental allergies and my symptoms…this isn’t my allergy symptoms). Headaches mostly started around my period but now is throughout my cycle also
-horrible brain fog. I mean I feel like I have holes in my brain and cannot access the info anymore (think that episode of SpongeBob where his brain is burning the info-that’s how I feel). I can’t access words, thoughts, memories and it’s constantly like hitting a thick gray wall when I try
-other neuro symptoms: lack of coordination, decreased depth perception/spatial awareness, constantly slurring words and combining words/misspeaking (neuro ruled out this being migraine symptoms)
-I weighed 178lbs in June and looked the same until October. From October to currently I appear much skinnier (went from large clothes to smalls) especially around my face and neck even though I’m eating the same/more. My eyes are sunken in and I have horrible under eye bags where you can see my entire outline of my occipital area and it’s darker. Skin is pale and grayish (more so then typical winter paling)
-other: low blood pressure (87/50 to 120/60), losing hair (handfuls whenever I wash/brush my hair), bruising easily (where I never used to), reynauds, chest pain (tightness behind sternum- randomly not right after eating, dull pain intermittent throughout last couple months)
Specialists Ive seen and conditions ruled out so far:
- pcp, neuro, gyno, infectious disease, GI
-anemia (ferritin was lower side of normal, hemoglobin is normal), thyroid (t3,4, the free one all normal), vitamin d deficiency (had vitamin d def supplemented it now it’s normal), gyno said it’s not their area, neuro said it’s not neurological cause nor sleep related (ex:sleep apnea)
Test results:
-all within normal range (cbc, metabolic, protein, Ana, c-r protein, acetylcholine, musk antibody, creatinine kinese, lipid, A1c, , not hiv, ecg)
-lyme: western blot positive for bands 41 and 58 but negative overall (infectious disease doesn’t believe it’s lyme)
-sed rate is 19? So normal range but high end?
-BUN is 6 (both from today and a month ago)
-ALT is 9 (range is 10-50) month ago it was 17 (range 13-56)
-bilirubin is 1.2-1.4 but it’s been that way since high school so I think an unrelated genetic thing
-sodium is lower end of normal (138) even with having super salty foods (I was surprised it’s that low honestly)
-EBV panel was positive for all 3 types of antibodies on 2/22/23 (infectious disease doesnt think it’s a cause for concern)
Basically, I have no idea what’s going on because we’re ruling everything out..but then the general inflammation markers are all coming back normal so we don’t think it’s lupus or arthritis at least. It’s to the point I’m starting to think some sort of cancer honestly- I haven’t noticed any lumps anywhere though. GI tract is normal
Please let me know if anyone has any other ideas, I’m at a loss!! Thank you
I recommend trying gluten free diet. You can have a reaction to wheat without having celiac antibodies. Wheat sensitivity can cause any of the over 300 symptoms associated with celiac. It does not always look like just GI problems. For me wheat caused speech problems, anxiety, rashes, vitamin deficiencies which led to more issues, tingling, pain, dark puffy eyes, abnormalities on labs including enough to be referred twice to be screened for leukemia. Plus gastrointestinal probs. Diagnosed lupus but on a whim tried gluten free and within days I felt better, still healing. It’s been over 2 weeks and getting better. It’s not lupus!
Hi, I hope you're feeling better. I would find a good Dr trained in EBV. EBV is no joking matter and needs to be taken seriously!!! This needs to be treated!!
That looks like an easy one: systemic immune activation via probable MCAS. MCAS is said to be "seen by many doctors, recognized by few".
Out of a dozen possible relevant observations, here are a quick two:
- histamine headaches (relieved by H1 blocker) = overactive Mast Cells. IgE allergies are not the same thing
- easy bruising w/ normal platelets (and normal liver-produced coag proteins?), and apparently non-fragile vessels = possible heparin from MCs
Plus add in your lifetime allergies, etc. ESR and CRP are not relevant.
Empiric treatment can be OTC to try: H1 + H2 blockers, plus MC stabilizers such as luteolin, quercetin, fisetin. I.e., anti-inflammatory flavonoids tested in RCTs.
MCAS is even associated with the chronic EBV and long Covid as mentioned by Jessie. Also, assoc POTS; plus CFS and it's sister Fibromylagia; plus female hormones.
Joints and muscle? Maybe using frankincense to inhibit: 5-LOX -> LTB4 -> neutrophil storm
Or malic acid or nicotine as used in Fibro. Phytosterols.
Boosters can make your situation worse by provoking your overactive immune system.
No skin flushing or itch?
Out of a dozen possible relevant observations, here are a quick two:
- histamine headaches (relieved by H1 blocker) = overactive Mast Cells. IgE allergies are not the same thing
- easy bruising w/ normal platelets (and normal liver-produced coag proteins?), and apparently non-fragile vessels = possible heparin from MCs
Plus add in your lifetime allergies, etc. ESR and CRP are not relevant.
Empiric treatment can be OTC to try: H1 + H2 blockers, plus MC stabilizers such as luteolin, quercetin, fisetin. I.e., anti-inflammatory flavonoids tested in RCTs.
MCAS is even associated with the chronic EBV and long Covid as mentioned by Jessie. Also, assoc POTS; plus CFS and it's sister Fibromylagia; plus female hormones.
Joints and muscle? Maybe using frankincense to inhibit: 5-LOX -> LTB4 -> neutrophil storm
Or malic acid or nicotine as used in Fibro. Phytosterols.
Boosters can make your situation worse by provoking your overactive immune system.
No skin flushing or itch?
Has anyone considered long covid?
Your theory about EBV could be right on.
https://www.theatlantic.com/ideas/archive/2022/08/long-covid-monovirus-ebv/671080/
https://www.news-medical.net/news/20220623/Epstein-Barr-virus-can-reactivate-in-long-COVID.aspx
There are many other articles - search Long Covid and EBV to find them.
And definitely talk to your neurologist about it. If you live in an area that has a long covid clinic, try that, too.
I'm sorry this is happening. Long covid is awful, and the struggle is real.
Your theory about EBV could be right on.
https://www.theatlantic.com/ideas/archive/2022/08/long-covid-monovirus-ebv/671080/
https://www.news-medical.net/news/20220623/Epstein-Barr-virus-can-reactivate-in-long-COVID.aspx
There are many other articles - search Long Covid and EBV to find them.
And definitely talk to your neurologist about it. If you live in an area that has a long covid clinic, try that, too.
I'm sorry this is happening. Long covid is awful, and the struggle is real.
Oh! To add:
I had Covid in Jan 2023 and then EBV reactivated right afterwards, but these symptoms predated Covid and was progressively getting worse before Covid. I had many closer run ins with Covid (sharing same drinks with people who tested positive a day later) multiple times the past few years but I ended up getting Covid from wearing a mask and socially distancing with a client who had someone in their home positive, and I’m sure that’s where I got it from SO my theory is something was making my immune system weaker for me to have gotten this now rather than all the times before (no boosters before, now I’m caught up on boosters even!) then Covid tripped up the EBV
I had Covid in Jan 2023 and then EBV reactivated right afterwards, but these symptoms predated Covid and was progressively getting worse before Covid. I had many closer run ins with Covid (sharing same drinks with people who tested positive a day later) multiple times the past few years but I ended up getting Covid from wearing a mask and socially distancing with a client who had someone in their home positive, and I’m sure that’s where I got it from SO my theory is something was making my immune system weaker for me to have gotten this now rather than all the times before (no boosters before, now I’m caught up on boosters even!) then Covid tripped up the EBV
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