I’m sorry to hear your suffering – been there, done (and doing) that. As someone with early AI (autoimmune immune) disease, please be prepared that your life may not return to how it was before. Everyone is different, but your immune system has been altered. I was in denial, and see-sawing for years, before sh*t got real. I have friends that take their meds and have no symptoms.
The moral of this story is PATIENCE. So hard a virtue, indeed.
Based on your story, it sounds like EBV activated AI disease – which is common and one of the prevailing AI genesis hypothesis. Lyme disease (I was a rampant outdoorsmen) kicked off my AI disease, but I always sick as a kid and had a weak immune system to start. So it just took advantage of the situation.
From my own experience your symptoms sound like they could be from any of the following (no specific order):
– Sjogren’s Syndrome
– Hashimoto’s (aka Autoimmune Thyroid Disease)
– Celiac (seronegative Celiac is rare but happens)
– Pernicious Anemia (low B12)
– SIBO (which is usually secondary to AI dysfunction, not the underlying problem.
Common variable immune deficiency (aka CVID) is also a possibility. AI diseases are often an extension of CVID. You would need to see an immunologist for that workup. If you are low on IgG (gammaglobulin) you can get regular infusions that can help with immune dysregulation. Higher doses have an anti-inflammatory effect similar to steroids, and are often used as a starter course of 3-5 days consecutive, then once every 3-4 weeks.
Note – all these diseases overlap quite regularly, it is not known why.
I can offer a few points of advice from my experience, and I hope my verbiage doesn’t dilute the message. Hope you find some nuggets of “wisdom” that are helpful. No young man should suffer like this.
1 ALL TESTING FOR THESE AUTOIMMUNE DISEASES ARE INACCURATE.
E.G. I’ve been positive for months for ANA, then negative for months. Doctors cannot say why.
Our scientific understanding of the immune system is improving. New, exciting, hypothesis are being developed everyday. No shortage of research. But clinical application of this research is years away… unfortunately.
2 RESEARCH IS YOUR ALLY.
Should you choose to do your own research, the following sources are far and away the best sources:
– Medscape (professional version, free if you register)
– Wikipedia (great place to get the basics, sh*t is confusing!)
Best not to rely on anecdotal testimonies, such as blogs, and especially personal blogs that are selling something – whether a brand personality, or supplement and books through Amazon, etc. Sometimes blogs are just people’s convoluted hypotheses that are benevolently disseminating mis-information. People with chronic disease often find control/power of their disease by over-identifying with it and feel the need to spread their “gospel”.
Don’t discount them 100%, just use a critical analysis, and keep a big grain of salt next to your computer.
Take chat groups – including this one, and my advice – with a grain of salt. A good scientist is always skeptical, because “new sh*t”, as the great Lebowski said, “always comes to light”. There are usually NO easy answers or solutions. We are all doing our best, including the doctors who may post.
Nonetheless, it is very important to swap ideas to gain knowledge. Knowledge is power!
Find groups you feel are not quasi-scientific, or cliquey and dogmatic. If you connect tot the right people, who are informed, they can best help you, both with medical info and emotional support (don’t discount that).
2. FINDING A TEAM OF DOCTORS – THAT WORK TOGETHER, (E.G. SAME HOSPITAL) – AND WHOM YOU CAN DEVELOP A LONG-TERM RELATIONSHIP WITH IS KEY!
When you have a multitude of symptoms – neurological, gastro, etc, you end up with a lot of specialists. Continuity with doctors leads to knowledge of your unique, individual scenario, helps develop mutual respect and trust, and usually a friendship – the doctor really cares for your well-being. Those are my pre-requisites for working with doctors. If they don’t meet those conditions within 1 year, I leave, and get a referral from one of my existing doctors. Not that I immune to 2nd opinions when necessary from my team either.
I find it best to approach doctors as scientists, not healers. That is the language the speak. The more rational you are, the better studied, the better the consultation will be. For years I have printed out a list of bullet points of what I want to speak to a specific doctor about (in part so I don’t forget anything), and give them a copy so they can comprehend it both by reading and listening.
3. MY APPRAISAL
1 SMALL FIBER NEUROPATHY (SFN)
SFN is peripheral neuropathy. This can deregulate your whole system through autonomic and parasympathetic nervous systems (subsets of peripheral neuropathy system). SFN is best diagnosed by biopsy, if you had reduced sweat test positive, I’d be shocked if your biopsy was normal. Therapath is the standard lab. See if your results were sent there.
SFN is very prominent in males with Sjogren’s, which is a 80-90% female disease, with about 20% (professional guesstimate) of patients having SFN. I had seronegative Sjogren’s with SFN long before (years) I had the traditional SICCA symptoms, of dry mouth and eyes. Stomach dysmotility issues are often seen in Sjogrens’s. I still have seronegative antibody testing at times, though my doctors are all in agreement I have the disease.
Best serological testing is SS-A and SS-B tests. Do not bother with the lip biopsy, waste of time!
The Raynauds is and low C4 complement are signs of Lupus. There are multiple type of ANA tests for Lupus (ANA is used for Lupus but not specific for Lupus per se). Lupus is very multifaceted in it’s appearance. It’s also a predominantly female disease, and you can be seronegative.
Again, I have fluctuating positive and seronegative antibody testing for ANA at times.
I don’t know enough about Lupus to say much more. There is a lot of good info on the web to inform yourself. Only thing I can unequivocally advise is seeing a rheumatologist if you haven’t. Also test Rheumatoid Factor (RF) as another biomarker for Lupus.
Hashimoto’s, aka Autoimmune Thyroid Disease (AITD) is another disease to look into. I have had antibodies against Thyroid for years, but my thyroid tests were “in range”, which I found out doesn’t mean much. You must find an endocrinologist who views patients on a case by case basis. The standard ranges are not agreed upon in the community.
I tried Synthroid for Hashimoto’s caused hypothyroidism 5 years ago, and quit it. Now the hair has fallen out of my legs (I’m a 39 yr old, hairy male), I am freezing all the time, and have trouble ejaculating (sorry for the TMI). I just restarted Synthroid, despite my thyroid levels being in range. There is TSH, T4 free, T4 total and T3. I was low TSH, T4 total and T4 free. My immunologist did not see it as being hypothyroid secondary (or subclinical) to AITD.
Serological testing for Hashimoto’s (AITD) include TPO, and TgAb.
Like Sjogren’s, AITD can cause all sorts of hard to pin down problems. Stomach problems and fatigue are often paramount. If you see an endocrinologist (most of them suck btw, so shop around) it is also worth testing your testosterone (T) levels. T levels are often low in young males with AI diseases like are usually found in females, including AITD, Lupus and Sjogren’s.
This is a TOUGH one. I was scoped and found to be clean, but only recently found that one can be seronegative, especially if they have an underlying immune dysfunction.
The only real test for this 4-6 gluten free diet, which is very hard. Especially when you have stomach issues and carbs seem the easiest thing to digest.
Celiac can cause SFN.
You said SIBO was ruled out but the tests are not accurate. The antibiotic Xiafixin for 3-4 weeks is most effective. My GI just turned me on to Antrantil, which is a supplement but have not tried yet. Low ferritin is often seen in SIBO.
FYI once you have SIBO it often comes back.
Your case does not sound like Crohn’s, but Crohn’s can often express itself variably. Since you’ve had GI workups, I would advice seeing a rheumatologist for a 2nd opinion. But I would keep this in the back of your mind, but look into the other diagnoses I listed above first.
SUPPLEMENTS: General note, I’m wary of supplements. You really don’t know what you are getting because they are not FDA approved and the consumer protection is horrible in that industry because of lobbying.
For probiotics I trust Florastor, or Jarrow’s products. BTW there are many types of probiotics with different effects. Not one size fits all. Jarrow’s makes good supplements in general IMO. One of the few brands I trust. I use their Curcumin, a ginger based plant product that is used to make Turmeric.
ANTI-DEPRESSANTS: They are not a solution, but a tool that can be helpful at times. If you can handle the fatigue and dryness that comes with TCA’s, I’d try Amitriptyline or Nortriptyline. These have a good track record of helping SFN and stomach dysmotility. Unfortunately they are too fatiguing and dry me out, but IMO they are worth trying. Low risk/benefit ratio.
SSRI and SNRIs will not directly help AI issues IMO, but can offer emotional support. Talk therapy – with a professional, family or friends – is better.
PROTON PUMP INHIBITORS (PPIs).
I like Prevacid – or it’s long release version Dexilent – MUCH better than Nexium or Prilosec. I take Zantac also, but Zantac is an H2 blocker (H stands for Histamine), and it works much differently than PPIs. Most people find PPI’s more effective.
I would think about trying Prevacid 30mg once a day or 15mg twice a day to start. OTC generic available.
PPI’s work best if you wait 30-60 minutes after you take them to eat. It activates the medication. Most doctors don’t know this. Dexilent (no OTC version) is the only PPI that you don’t have to wait after you take it because of it’s slow release mechanism. More is less with PPI medications – you want to be able to make some of your own acid naturally. So taking it once a day is ideal, and not taking for more than 4-6 weeks at at time, unless absolutely necessary.
If you have bad reflux, you have to change your diet! Stop/limit coffee and chocolate. They are delicious killers!
Keep alcohol to a minimum as well. Bad for reflux/GERD and neuropathy.
Fried food is a total no-no.
EXERCISE: Exercise is GREAT! Keep it up if you can, but don’t over do it. Your body needs more time to recover since it is in a diseased state.
I have to get going… running late now.
The esophageal manometry test and low ferritin tell me there is an obvious there is a stomach issue, but what cause? It may be from SFN, thyroid, Sjogren’s… it’s so hard to say. You have to shake the tree and see what falls out. Trial and error.
Hit me up if you have questions brother! Wishing you health and happiness and hope I can help you from my experience.