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Frustrated

This started about 4+ years ago. Pain at the base of the skull radiating up and around above temples. Next, palpitations and anxiety. Tailbone pain, and base of skull pain and headaches increased. 2 years back started to notice quiet tinnitus in R ear. Over the next 12 months has increased to very loud. Pushing on mastoid or jutting jaw forward increases tinnitus x10. Over the last year GAD, tinnitus, upper cervical pain, headaches, palpitations, blurring vision, light sensitivity, sound sensitivity, night sweats, lack of sleep have all gotten worse.
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1081992 tn?1389903637
"but doc ruled out auto"
Well, no. It's not possible to rule out all autoimmunity, just as it's not possible in general medicine to rule out all viruses. You can only test for individual ones. Besides, the ANA was positive, which means at least that there were some auto-antibodies present.

One thing that the doc did is determine that it's *unlikely* that you have the SLE type of Lupus. E.g. because of negative anti-dsDNA. But look here:
"Systemic Lupus Erythematosus with and without Anti-dsDNA Antibodies"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4438145/
"The anti-dsDNA antibodies are a marker for Systemic Lupus Erythematosus (SLE) and 70–98% of patients test positive."

If someone has dsDNA antibodies, they very probably have Lupus. But if they don't have the dsDNA ABs, that doesn't rule out Lupus.

To make things even more complicated, you'd ideally want the dsDNA tested during a flare. Then again, as described so far you don't seem to really have flares. Just steady progression.

Even so, you can also have your immune system harming yourself, without any ABs being involved at all. There is more to immune dysfunction than just auto-antibodies.

And... you didn't post any test for anti-histone ABs, which I'd ask to have done - because you started with your mystery condition after taking that antifungal. The anti-histone AB test looks for "drug induced Lupus", which usually goes away within months after stopping the drug -- but not always. At this point, we have to grasp at straws, as long as there is some plausible rationale for each straw.

----

Btw, you were also tested for scleroderma and Sjogrens ABs, when trying to explain your skin problems.
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1081992 tn?1389903637
Here's a high-level thought-provoking video for an insomnia night: https://www.youtube.com/watch?v=BmrbljiXOsY

"Overlap syndromes" = some of this and some of that. Like the lupus-but-not-lupus that I've been referring to.

I just ran across her (a rheumy) today, she has a good explanatory style. Disregard the specifics of Rheumatoid Arthritis (you don't have that) or Mixed Connective Tissue Disorder (you don't have RNP antibodies). Focus instead on her take that in mystery cases you might have to focus on features, and not get fixated on looking for a formal diagnosis - though most everybody, patients and docs alike, naturally want to have a clear cut, formal Dx. But immunology/rheumatology can often be murky.
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...and then you try to treat the features. In your case that'd be doing everything to be anti-inflammatory.

But then here's an additional thought, about management as opposed to treatment: let's take your neck, the lower back and the glutes, then put them in the category of musculoskeletal. Arthritis and myositis. Let's say that being somewhat chronically inflamed makes them vulnerable to worsening by mechanical trauma. That'd be especially regarding strong exertion during certain postures, etc. The coital thing.

As a parallel, if somebody mildly sprains their ankle and it's inflamed, the strategy of course is to not make it worse by exerting mechanical force. Or likewise you wouldn't be doing something abrasive on a sunburn.

I know, it sounds simple; but that effectively sets aside looking for anything complicated.

The same might apply to the bottom of your feet.

Well, it does sound too simple because the right words just aren't coming to me to get the point across...
1081992 tn?1389903637
"During my mass detox from everything to try and find the root cause of what was going on... I changed my diet and eating habits..."

Slinger, your ability to dedicate effort on this is going to be one of your biggest assets. Most people give up very quickly and just wish for some magic specialist with a magic pill to come over the hill. I commend you.


"I've never found any triggers."
Be aware that some *very* rare people can only have red meat, plus maybe some supplements. Even the vaunted 'leafy  greens' give them problems, medical and even psychological.

There's a saying in medicine: "If you hear hoof beats in Central Park, don't look around for zebras. Look for horses." Except sometimes, there really is a zebra.

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Avatar universal
Have you been checked for chiari malformation?
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1081992 tn?1389903637
"Hydroxyzine. Would this be comparable to Benadryl?"
They are both H1 blockers. But the stomach acid suppressors like Pepcid are H2 blockers. People with mast cell disorders get prescribed both, btw. You prbly have stomach problems?

Note that stomach acid production is related to histamine.

I'm not the pill happy type but if I were you I'd take the hydroxyzine, for a possible good night's sleep (lack of sleep is pro-inflammatory) - but also as an experiment to see what happens. Maybe 3 days. Since it's a prescription, we know it is physician approved for you.

It also reinforces the concept that inflammatory histamine has anxiety-like effects, since hydroxyzine/Atarax is known for reducing anxiety while not being a benzo tranquilizer.

I wonder if you have psychologically driven panic attacks, or they are instead immune chemical driven. I'd guess the latter.

"Zyrtec shortly after the histoplasmosis. It worked great for about a year, then just stopped working."
"just stopped working" is a known thing in these circumstances. I have a theory but won't cloud matters at the moment with it.

Zyrtec is a non-sedating H1 blocker.

----

Oh, I should have mentioned that an ID doc would know if histo granulomas can 'leak'.
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3 Comments
I used to have really bad GERD that actually damaged my esophageal sphincter and scarred it. I was on Pantoprazole for years. During my mass detox from everything to try and find the root cause of what was going on, the Pantoprazole was one of the last things I quit. I changed my diet and eating habits. Started eating healthier and eventually got off them too. Slight GERD still but manageable.
As for panic attacks, I have no idea what causes them. I've never found any triggers. Anytime, anywhere, any circumstance.
As for the hydroxyzine, I really don't like mood altering stuff. But I'm guessing taking it for eight hours of sleep wouldn't hurt as long as it didn't bleed over too far into the next day.
I started fluoxetine for some depression that recently surfaced from years for lack of answers. Been on it for about five weeks now and has seemed to have taken the edge off. Anxiety is still present.
Interesting. I actually have had like mega gerd. I need to lose some pounds which fixes it for me. I'm looking for some of the other ways to work on it which involve prebiotics, more acid, etc. I take pepcid. But I'm worried about the scaring you mention. Does that cause you any issues? As to psychiatric meds, all I can say is that they have saved my son's life. He takes prozac AND hydroxyzine as needed. He too has struggled with anxiety not being as easily treated as the depression. Therapy strategies have worked the best for that but still, it plagues him. Hydroxyzine has helped 'take the edge off' as does propanolol which he also takes prn I have taken hydroxyze. I didn't find it mood altering. It mostly works on physical symptoms of anxiety.
Some basic rules, easy to follow. First, get away from fast food. If you can do that, the healthy part comes easy. Try intermittent fasting. Two meals a day, or eat only within a 12 hour period a day. Stay away from any food 3-4 hours prior to sleeping.
1081992 tn?1389903637
Since you have had proven granulomas, and they wouldn't have gone away by themselves, then that provides a possible alternative Dx: the granulomas could be in effect 'leaking' and that could activate systemic inflammation. Not likely, but possible.

E.g., if a person wants to receive a powerful anti-TNF biologic drug, they will be denied if they have latent tuberculosis (the TB is walled off inside granulomas). Keeping pathogens inside a granuloma is an active process, not like being encased in concrete.

But arguing against this theory is that your neutrophils are not elevated. Neutrophils typically get elevated over fungus and bacteria. That's why I'd asked about your neuts.

(Lymphocytes get elevated typically over viruses. Your absolute lymphocytes are lowish.  Although lupus-like conditions are known for low RBCs, they can sometimes lower white blood cells or even platelets. The mechanism for that is destruction by immune cells.)

I mention these things because as you get familiarized with how immune dysfunction goes, your own condition becomes more understandable. Less of an opaque black box, so to speak.
Helpful - 0
1 Comments
Occasionally the granulomas do hurt, lika an achy stabbing and especially during times of stress and anxiety. Interesting
1081992 tn?1389903637
The odds are extremely high that you have a chronic inflammatory condition. With a rare exception (neurogenic inflammation), it's pretty much always the immune system that causes inflammation.

You have many signs of the infamous Lupus, which is called the disease with a thousand faces and also sometimes called the great mimic. That's because of the large variety of places where it can attack.

Your doc has investigated for Lupus. But you don't have the specific antibodies *associated* with Lupus, mainly dsDNA and Smith. Therefor you don't officially have Lupus and docs won't give you the Tx for Lupus. Dx'ing Lupus is not necessarily simply black or white anyway. And some cases are mild. So you can find a rheumy who's specifically handled a large number of Lupus and similar cases, and get a 2nd opinion - that's entirely reasonable and maybe you have done that already.

The Tx for Lupus is to reduce inflammation and get symptom-free remission. But you won't get the first-line anti-inflammatory Plaquenil, nor more powerful drugs like the DMARDs, because the risk outweighs the benefits, for now.

So you should want to live as anti-inflammatory as possible, and become expert at that. That's a big topic right there.

However, foremost should be keeping an eye on kidney function. Did any doc order creatinine and GFR every 3 months? Men are less likely to get kidney inflammation than women, but once having it are more likely to have a severe case. And rapid, irreversible damage. An OTC protein-in-urine dipstick will flash the alarm before you'd see any frothing or redness in urine.

There's much more to this. I'll post more separately as time allows.

Also please reply as to whether you have granulomas showing on a lung scan. Have you seen an Infectious Disease doc? I'd websearch for-->  sequelae histoplasmosis

and/or--> chronic complications histoplasmosis atypical
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It's been a long time since my last chest image, but it did show a couple large calcified granulomas. As stated previously, I had the histoplasmosis for a while before diagnosis. To the point of coughing up blood. Hence the numerous TB tests. No, I don't have an infectious disease doctor.
1081992 tn?1389903637
"base of skull"
I forget the name offhand, but there are two structural conditions associated with your inflammatory symptoms. One has the lower end of the brain extending into the spinal canal. The other involves some narrowing in the same area, IIRC.
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2 Comments
Chiari malformation
Thanks, Stacee. It's a good guess and Slinger was checked for Chiari, but is negative.
1081992 tn?1389903637
Dirtslingerr, the odds are very high that you are suffering from immune system dysfunction. Immune system dysfunction causes inflammation when it shouldn't.

"...or they think I'm nuts because they don't see anything"
That is so very typical, to happen to people with immune dysfunction. Often referral to psych. Wrongly so.

"Ask me anything about this case, I'll tell you if I can only get some answers."
Okay, let's find out. But most people give up after one day or so. They stop replying.

Here's a big hint: a well known and powerful pro-inflammatory biochemical is histamine. But Prozac was developed out of the anti-histamine Benadryl/diphenhydramine. The sleep aid Sominex is double dose diphenhydramine.  (Diphenhydramine has sedative effects, so much so that "non-sedating" antihistamines were deliberately developed.) What I'm pointing out here is that anxiety/hyper-alertness is linked to systemic inflammation.

The initial pressing questions for you: what happened shortly before you got sick? And what happened for you in earlier life that was unusual medically (and the same for family members)?
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10 Comments
No chiari or narrowing. No Lyme or autoimmune. Nothing I can remember that's significant. Just had a panic attack at work one day, then another on the way to work. No, not a stressful job. Many years before I contracted histoplasmosis and it settled in my lungs. After a few TB tests and lung biopsy, they cultured an answer. Started on a drug called sporanox, expensive drug. Stayed on that for almost a year, after discontinuing it, I was allergic to everything.
"no chiari"
Okay, you know your stuff then.

"allergic to everything"
Well, that's immune dysfunction. Is that resolved completely?

"No... autoimmune"
Are you saying that because of a negative ANA test? That won't rule out everything autoimmune, and won't rule out anything auto-inflammatory (e.g., mast cell mediated).

Do you have lung granulomas from the histoplasmosis? That'd be an immune thing. It might be that discontinuing the anti-fungal let the the histo sometimes 'escape' the granuloma encapsulation, putting you in a low-ish level chronic inflammatory state. How is your neutrophil count? WBC? How are your ESR and CRP? Any advanced cytokine testing like IL-1, TNF?

Any spontaneous flushing? Occasional tachycardia?

Any Hx of frequent infections?
An example: look up the side effects of recombinant interferon, which is the man made version of a self made (endogenous) anti-viral that's used against Hep-C. You'll find burning/blurring eyes, etc. I'm not at all saying you have Hep-C. I'm pointing out the type of symptoms that can arise from immune system biochemicals. Likewise, when somebody gets the flu, all their symptoms are from immune activation and resulting inflammatory biochemicals, not from the actual virus.
How does Benadryl affect the insomnia? If your mast cells are heavily involved in your overall problems, we can try OTC "mast cell stabilizers", which inhibit MCs from releasing their biochemicals (mediators).

MCs are heavily involved in allergies.

Night sweats are caused by immune reaction.
I still have some allergies, hay fever. ANA was positive, but doc ruled out auto.
Results:
ANA SCREEN, IFA
POSITIVE

DNA (DS) ANTIBODY
1 IU/mL

SCL-70 ANTIBODY
<1.0 NEG AI

SM ANTIBODY
<1.0 NEG AI

SM/RNP ANTIBODY
<1.0 NEG AI

SJOGREN'S ANTIBODY (SS-A)
<1.0 NEG AI

SJOGREN'S ANTIBODY (SS-B)
<1.0 NEG AI
End

All blood counts within range. No flushing but have something similar to poikiloderma along my neck that reacts to capillary refill. Yes, occasional tachycardia/palpitations but always thought it was connected to anxiety. Also creatinine levels always high. Small cyst on one kidney.
I was tested for chiari and narrowing as a result of postcoital headaches which have since subsided. Pain a the base of skull has never subsided but only continues to worsen. Now postcoital gluteal pain is common. Also coccydynia started around this time.
And, when all this started the bottom of my feet started hurting like walking on gravel. Sitting and relaxing or laying down trying to sleep they feel like dry ice is on them, or the feeling of thawing out after being numb from the cold. That achy hurt. This feeling is constant. A1C is borderline, and I don't believe it to be neuropathy.
Creatinine 1.42  H 0.76-1.27 (mg/dL)
eGFR 58  L >59 (mL/min/1.73)
Lymphs (Absolute) 0.5  L 0.7-3.1 (x10E3/uL)
Monocytes(Absolute) 1.0  H 0.1-0.9 (x10E3/uL)
Eos (Absolute) 0.5  H 0.0-0.4 (x10E3/uL)
C-Reactive Protein, Quant 16  H 0-10 (mg/L)
ANA a few months back.

F Anti-DNA (DS) Ab Qn 1 0-9 (IU/mL) MB
-                                                   Negative      9
F RNP Antibodies <0.2 0.0-0.9 (AI) MB
F Smith Antibodies <0.2 0.0-0.9 (AI) MB
F Antiscleroderma-70 Antibodies <0.2 0.0-0.9 (AI) MB
F Sjogren's Anti-SS-A <0.2 0.0-0.9 (AI) MB
F Sjogren's Anti-SS-B <0.2 0.0-0.9 (AI) MB
F Antichromatin Antibodies 0.2 0.0-0.9 (AI) MB
F Anti-Jo-1 <0.2 0.0-0.9 (AI) MB
F Anti-Centromere B Antibodies <0.2 0.0-0.9 (AI) MB
F See below: Comment MB
- Autoantibody                       Disease Association
- ------------------------------------------------------------
-                         Condition                  Frequency
- ---------------------   ------------------------   ---------
- Antinuclear Antibody,    SLE, mixed connective
- Direct (ANA-D)           tissue diseases
- ---------------------   ------------------------   ---------
- dsDNA                    SLE                        40 - 60%
- ---------------------   ------------------------   ---------
- Chromatin                Drug induced SLE                90%
-                          SLE                        48 - 97%
- ---------------------   ------------------------   ---------
- SSA (Ro)                 SLE                        25 - 35%
-                          Sjogren's Syndrome         40 - 70%
-                          Neonatal Lupus                 100%
- ---------------------   ------------------------   ---------
- SSB (La)                 SLE                             10%
-                          Sjogren's Syndrome              30%
- ---------------------   -----------------------    ---------
- Sm (anti-Smith)          SLE                        15 - 30%
- ---------------------   -----------------------    ---------
- RNP                      Mixed Connective Tissue
-                          Disease                         95%
- (U1 nRNP,                SLE                        30 - 50%
- anti-ribonucleoprotein)  Polymyositis and/or
-                          Dermatomyositis                 20%
- ---------------------   ------------------------   ---------
- Scl-70 (antiDNA          Scleroderma (diffuse)      20 - 35%
- topoisomerase)           Crest                           13%
- ---------------------   ------------------------   ---------
- Jo-1                     Polymyositis and/or
-                          Dermatomyositis            20 - 40%
- ---------------------   ------------------------   ---------
- Centromere B             Scleroderma - Crest
-                          variant                         80%
I can get a prescription for Hydroxyzine. Would this be comparable to Benadryl? I also remember starting Zyrtec shortly after the histoplasmosis. It worked great for about a year, then just stopped working.
Avatar universal
This sounds similar to pains I had when I was using heavy stimulants, however your symptoms are much more serious. You need to see a doctor and if you're using, don't worry about telling your doctor because they have patient confidentiality
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I have quit absolutely everything. Even stomach meds trying to pinpoint something. Ask me anything about this case, I'll tell you if I can only get some answers. I have been to multiple doctors in multiple fields. I can't get any answers. I basically comes down to two diagnosis. Either they want to refer me to a pain clinic (which I'll never do again) or they think I'm nuts because they don't see anything. This is not phantom, it is very real and starting to effect quality of life. I just need fresh eyes, or someone that knows what the hell is going on.

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