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Please help!! auto immune illness even w/ normal blood test results?
Hi everyone! I have joined this community in a desperate bid for answers or guidance that my doctors seem unwilling to give. I feel as though I am going crazy and am being made to feel like a drama queen for insisting things aren’t right.
For context: I am 32F. 5'8 / 173cm and 80-83 kg / 176-182 lbs. I am caucasian. All medication I take is included below. I drink 3-4 times per month. I do not smoke or use recreational drugs. I eat healthy but do not eliminate any particular food groups from my diet at present. I am British but live in Belgium currently.
Since I was a teenager I always had bad bloating and constipation which caused me discomfort but never impacted my health further. I grew up in an old house with black mould in some rooms, including my bedroom. I was told this could have impacted my health but was never given any further details on how to look into this.
**September 2022:** I had bad constipation (I didn’t go to the bathroom for nine days) and was hospitalised. They found I had mesenteric adenitis (which is apparently rare in adults) but no one ever explained what caused the constipation (or the mesenteric adenitis for that matter). They did take blood tests at the time and everything came back normal. This included tests for celiac, thyroid, lactose intolerance. (I have posted my four-page blood test results from September 2022 below - they were originally in French so I have run them through Google Translate in order to hopefully make them easier to understand).
**November 2022:** I had a colonoscopy - they said there was some inflammation in my bowel and I also had mesenteric panniculitis. The doctor said there was no treatment and I just had to wait for the pain in my stomach to stop, which it did in late December 2022. No one could tell me what was causing my bowel issues and constipation. I was advised to keep a food diary and try to assess if I was intolerant to anything, but the constipation seemed very random (I eat salads most days, but suddenly one day I would eat a salad and my stomach would bloat and I would become constipated).
**December 2022:** The stomach pain stopped, but then a few weeks later I developed a cough and chest infection that lasted over three months. Two rounds of antibiotics did nothing to resolve it. I had a chest x-ray which showed a little bit of irritation/inflammation but nothing more serious. I once again had standard blood tests, which came back normal. My doctor said it could have been the result of a weakened immune system due to the stomach illnesses mentioned above.
**Winter 2023:** On several occasions, I have caught a cold from my partner in recent months. He would be sick for a day or two, but it would knock me out for over a week and ALWAYS developed into a cough (even if my partner hadn’t had a cough). For the last 15 years, EVERY TIME I get a cold or normal seasonal sickness, my glands will swell up. Now, I have noticed that as well as my glands swelling up, I will ALWAYS develop a cough.
When I was with family over **Christmas 2023**, I was sick again with a bad cold and cough and also developed a rash around my eyes that felt like sun burn (photo below). This has happened several times since December 2023. There was no change in my skincare during this time.
**Other symptoms:**
-Always cold
-Digestive issues (constipated)
-Cannot lose weight - I am currently 80-82 kg and 173 cm (technically overweight). I aimed to lose weight, first eating 1600 calories per day, then 1400, now 1200 (balanced macros) and walked 10-15k steps per day. My weight DOES NOT shift.
-I have genital herpes, which flare up much more frequently than is normal. Because of this, my doctor put me on preventative treatment a few years ago which he said should get rid of it all together, but it resurfaced less than a month later. I am particularly susceptible around the time of my period. I currently take 800 mg of acyclovir whenever the herpes flares up (usually 1x per 1-2 months).
In the last few months I have noticed an increase in the following symptoms:
-fatigue
-body aches
-dizzy spells
-more painful period cramps and stomach pains
-puffy face
Note: many of these could be seasonal and linked to the colds I've had, but I thought they were worth mentioning just in case.
I am scheduled to see a doctor soon, but in the past, once my test results come back normal, they tend not to continue investigating, no matter what my symptoms continue to be.
Any guidance you can provide is greatly appreciated, I am completely lost and desperate for some advice that might help end this ordeal.
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Hi @linsayculver
I have many of the same symptoms, including mesenteric panniculitis and puffy face. My diagnosis is Scleroderma (skin tightening) with GI involvement (mild fibrosis of the intestines). I have learned about panniculitis from a CT scan of the lower abdomen. GI discomfort existed for many years before I got Scleroderma, and now it is worse. The symptoms are: tightness in the lower abdomen as if someone is pulling it into a knot, getting worse on walking, GI discomfort with constipation, particularly post high protein meals, or prepared meals with preservatives. My GI is very sensitive to acidic foods like citrus. No acid/vinegar in the food, or high salt, or spices, which eliminates all sauces. Geri-Kot (Senna) was recommended for constipation to ensure daily bowel. Medications can make GI pain worse. Take medications with meal. Doctors do not suggest any specific treatment for panniculitis but a diet of freshly cooked meat, fish, and vegetables, and avoiding things that make it worse. Does anyone else have mesenteric panniculitis? What are the symptoms and how are you dealing with it?
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1 ReactionThis is an old post, but came across it when searching my own health issues. If you have not been tested for H Pylori, it could literally account for almost all your symptoms. I am 58, and went down hill seemingly out of nowhere. So many autoimmune symptoms after never having any autoimmune issues, dismissed by doctors, and truly unable to function. I then developed Epstein Barr, and then had a bad (autoimmune) reaction to a medication I had taken for years, which ultimately tipped me off to the pylori infection.
It all started with prolonged constipation, gas, had stomach pain, and then burning mouth & metalic taste. A month later, got out of bed and literally hard to walk?!!? I also had skin rash, sun sensitivity, metabolic issues (weight gain), herpes reactivation. Any prior dormant illness, resurfaced as a result of this infection.
Long story short, I ordered a home antigen H Pylori test and it tested positive twice. I requested my doctor order a breath test, and it came back positive. About half the population has this H Pylori bacteria, and it stays mostly dormant, but when it acts up, it can cause inflammatory response, and autoimmune. (Researching I discovered what’s called molecular mimicry) The treatment is difficult…quad therapy for 2 weeks, (would suggest getting prescription nausea meds) and/or you could try treating w/ natural supplements. (Mastic Gum, Manukora Honey, Black Seed Oil, Probiotics, Broccoli Sprouts/Mustard Seed)
I believe the Pylori was the trigger for almost all health issues, and then became the fuel for the reactivation & continued sequencing of the Chronic Epstein Barr, herpes outbreaks, unbelievable anxiety, rashes, and the arthritis. I did the antibiotic treatment. I am 3 weeks out, and although I have some stomach issues, the inflammation is now subsiding, and arthritis, constipation, burning mouth, all much improved. Please let me know how you are doing, and if you decide to test for Pylori. You could also test for Sibo, but it sounds to me like you may have H Pylori. For some reason, with certain people, it takes off, and it can literally manifest in ways outside the gut and is often overlooked. I am still fighting with my doctors who think I am a hypochondriac, but I am 58 and have never been sick like this, and they are unfortunately mistaken. I had double pneumonia, and worked while I recovered. The worst thing was being so ill, feeling so desperate and vulnerable, and to be dismissed. I was in the business side of healthcare for my entire career, thank God I did not find the medical community intimidating. I now want to help those that are also feeling vulnerable, but may not have the same experience. Strangers on line helped me a long the way, and I hope this finds you well, and if not, offers you a path forward. You are not crazy, don’t but into anyone who tells you otherwise!! HUG
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4 Reactions@tscribbs02 Welcome to Mayo Clinic Connect. You’ve had quite the medical journey! And now you’re well. What a trip!
If I can ask, how did you find MCC?
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1 ReactionHi, welcome and thanks for sharing here. I got sick after having Covid twice, although it was three months later. EBV was reactivated, no one knew what was wrong. I was told I had arthritis, my ANA titer was speckled and 1:8, however, I tested negative for all the autoimmune diseases. I am still struggling, 3 years later. I believe that this is Long COVID. The symptoms I have had over the last 3 years have mimicked other autoimmune diseases but the biggest is fatigue and post-exertion malaise, tinnitus, pain and inflammation and brain fog. I am going to inquire about the tests you took. I do know that a metallic taste in the mouth can be linked to kidney issues. I have also had times where I would eat something and my mouth burned so bad that I could not eat and then it would be gone the next day. Thank you for sharing and I know that I have found support here, in this community. I am facing having no health insurance in 2026, due to the broken healthcare system in this country. Thanks again and you might check the Long COVID page as well.
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3 ReactionsGet tested for Cold Agglutinin disease.
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1 ReactionYou wrote very a very excellent history and it is obvious you have many symptoms that involve different parts of your body and involve inflammation.
Did you have an ANA (antinuclear antibodies) and complement tests ?
Have you seen a rheumatologist or immunologist? Have you looked for an expert in autonomic
dysfunctions where you live (they are difficult to locate).
Best Wishes - keep advocating for yourself. It takes time and can be frustrating.
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2 Reactions@diverdown1
I’ve had many symptoms similar to yours. Took me many years and 4 rheumatologists before I was diagnosed with sero negative Sjogren’s Disease, RA, and lupus. They are all systematic which means a multitude of symptoms. Do whatever you can to find a rheumatologist who’s familiar with those problems. Get on medication as soon as possible to avoid further problems.
Good luck!
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2 ReactionsI too have gone through the same symptoms and so many more. Like you said, test come back normal and then they forget your complaints
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1 ReactionOk, first let me start with the disclaimer that I’m not a doctor (just a very informed patient) and nothing I say here should be construed as medical advice.
That said, none of the 9 human herpes viruses are truly curable, at best they can be suppressed. You may want to discuss with your doctor about going on full time suppression, because the virus remains active in your system and is doing damage even when you are not having a breakout.
I want to post this resource for you to learn more about your HSV2:
They won’t let me post the following as an actual link, so you will have to reconstruct it www .ncbi. nlm. nih. gov/
books/NBK47376/?term=Human%20herpes%20virus
HSV1&2 can both cause autoimmune syndromes (I’ve had an HSV1 triggered one caused by HSV1, which I acquired when there was a sterile field violation during a vasectomy procedure- I know, TMI-lol).
Because the board keeps logging me out when I switch out of this browser page to go get more info I am going to hit post now, and follow up with additional parts.
@hsv1aidisorder I see this is a very old post with many responses, so I won’t do the extensive follow up. I would suggest that anyone experiencing idiopathic autoimmune symptoms be tested for the human herpes viruses with known associations to autoimmune issues. This would be:
HSV1&2
VSV (varicella)
HHV-4 (Epstein-Barre, infectious mononucleosis)
HHV-6 A&B
As I said, I’ve had an HSV1 triggered autoimmune disorder which caused serious issues for me, massive capillaries leakage (both plasma & blood), circulation issues, neuropathy (it’s attacking my peripheral nerves), and serious gut issues similar to IBD caused by the viruses ability to both directly attack the epithelium and epi layers in the gut and through its affects on the microglia which influence the immune & inflammatory responses through the Toll Like Receptors (which TLRs depend on the virus, in my case TL4 & TL9 are heavily implicated).