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fiddlegrl

New member and mystery illness

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Hi,

 

I am new to this forum.  I thought I would introduce myself, and also wondered if anyone might have suggestions about some unexplained symptoms that I experience.  I am 23 years old.  I was diagnosed with PANS a year ago by a neurologist who diagnosed me based on my symptoms, and also through my Cunningham Panel results.  I was treated with one course of IVIG over a 3-month period, which didn’t have any effect on my symptoms.  I’ve had many tests done to evaluate for infections and other conditions, including brain MRIs, lumbar puncture, many blood and urine tests, etc.  I have a positive Igenex Babesia FISH test.  I also have a positive Bartonella serology through Galaxy Diagnostics.  I have 4 bands on my Lyme Western Blot.  I’ve taken several courses of antibiotics for Mycoplasma (which I now test negative for), and the possible Babesia infection.  I may have first developed PANS when I was 7, with sudden onset OCD, separation anxiety, etc. after some type of illness w/ vomiting and high fevers.  The symptoms I developed after this illness lasted for several years, but the severity seemed to subside with time.  I didn’t know about PANDAS/PANS at that time.

 

Years later, I became sick with various symptoms right before high school, and was diagnosed with postural orthostatic tachycardia syndrome (POTS).  I also developed symptoms that resembled OCD, anxiety, and depression, and also had trouble concentrating, around the time of the POTS dx.  Neuropsych testing showed some trouble with executive functioning.  I’ve tried several SSRIs and stimulants over the years, which helped somewhat at first, but have become less effective as my mental symptoms have worsened.  My mental and physical condition has progressively worsened.

 

Also, since I was young I’ve always felt different from other people, even around those who have struggles similar to mine, such as OCD.  For example, I have trouble interacting with people.

 

I have many mental and physical symptoms.  My mental symptoms include: severe anxiety, extreme fear of vomiting, OCD, tics, irritability, rage, angry outbursts (this involves episodes in which I cry, scream at, and blame my parents for making mistakes); mental fatigue, apparent loss of previous cognitive skills, inability to engage intellectually in most activities, difficulty concentrating and processing information (not able to absorb most content on TV, when reading), lack of comprehension in certain areas; trouble maintaining interest in more than a few topics at one time; trouble finding my way around places, and mental exhaustion in communicating and with simple tasks.  Also, I’ve had the fear of vomiting for years, but until recently I didn’t fully recognize that what I was feeling was actually fear and anxiety.

 

There’s also an aspect to what I experience, which is hard to describe, but I feel that it is mentally painful to be conscious all the time, even while I’m at rest.  When it is at its worst, it feels that my mind is on fire and it feels absolutely unbearable to be conscious.  When this happens, I will scream and cry uncontrollably, and Ativan is the only thing that helps blunt the pain somewhat.  These episodes often result in me running around, crying, and screaming at the top of my lungs.  When this “mental” pain is at its worst, I often will also feel pressure in my head, tension/stiffness in my neck, and a feeling like my mind is being squeezed.  In general, I have a constant sensation of something blocking the flow of my thoughts, and a resistance when I attempt to think.  I feel that my mind is stuck in a pattern of repeating thoughts/ideas.  My parents assist me with most daily activities.  I noticed an improvement in my ability to process information when I took Xifaxan for 7 days (for possible SIBO).

 

My physical symptoms include: Feeling full quickly when I eat, which has resulted in dramatic weight loss; chronic constipation, autonomic dysfunction symptoms, generally feeling very unwell, chills, severe fatigue and weakness; body aches, both aching and shock-like pains in back, legs, arms; abdominal pain, burning and gnawing sensations in stomach, abdominal discomfort and inflated feeling in abdomen, constant feeling of pressure behind eyes, intermittent involuntary eye movements, eyes are sensitive to light; ear pain, shortness of breath, mucus in throat, headaches, itching and burning skin sensations (face, around mouth, legs, upper back). 

 

My neurologist thought I might have porphyria, but my tests have been normal.  My urine sometimes changes from straw color to reddish brown when exposed to sunlight.  I had a genetic blood test done for the acute porphyrias through Mayo Clinic.  The test identified two heterozygous mutations, one on the HMBS gene, and another on the CPOX gene.  The interpretation of results: One alteration is a polymorphism of the coproporphyrinogen oxidase gene that modifies the effect of mercury on porphyrin metabolism in humans, resulting in the excretion of high levels of atypical porphyrin upon mercury exposure.  The other alteration, which is on the HMBS gene, is described as a variant of uncertain significance.  The interpretation states that the results are not enough to establish a diagnosis of acute porphyria.

 

I also had been living in a moldy environment for a number of years. 

 

I apologize for writing such a long post.  I just feel so lost and helpless.  I’m not sure how much PANS could account for my problems. 

 

Thank you for taking the time to read my story.

 

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Fiddlegrl -- Welcome to the forum, though I'm sorry for all you've been through and the issues you're still fighting.

I will say that I've been with this forum for many years now...first during my DS's illness and healing, and then somewhat less frequently for the last few years, checking in to follow up on old friends and any new research, and to chime in when something resonates with my experience.  Pretty much ALL of the symptoms you've described, unfortunately, have been discussed here as part of the PANs/PANDAs continuum.  It stinks.

I don't have any practical experience with respect to Lyme and its co-infections; my DS's syndrome was clearly strep-related, though seasonal allergies exacerbated inflammation and the immune response for a number of years, once the PANDAs had kicked into high gear.  Like you, though, we believe his behavioral issues were tied to atypical strep infections potentially as young as 3 years of age, though certainly by the age of 6 when he was officially given an OCD diagnosis.  But he never tested positive (via swab and culture) for strep at the time, and no local doctors would give us the time of day regarding PANDAs then, either, so he went without any real treatment until he hit 12.  That's when the PANDAs brought him to an absolutely non-functional state, the research coming out of NIMH, Columbia and Dr. Cunningham had progressed, and we were finally able to talk someone into an antibiotic trial.  It was a long road, but the rest, as they say, is now thankfully pretty much history.

As a result of our experience, though, I do think it likely that PANDAS/PANs sufferers who are at a more advanced age before receiving immune and/or anti-inflammatory therapies may have a harder road with respect to healing and "bouncing back;" not sure if that's because the brain "wiring" has matured more in the interim, or if the chronic inflammatory and auto-immune responses in the body are somehow more entrenched and therefore harder to reverse.  In the end, it took my DS about 5 years in total to return to pretty much full functionality, and that was with auto-immune, therapeutic and psychiatric interventions all thrown into the mix.  He continues to contend with some OCD and situational anxiety now and again, and I'm not convinced that this will ever disappear completely.   But those issues remain at manageable levels (knock on wood), and he's happy and healthy and constructive and functional.  Pretty much all we could ask for, after what he went through.

I'm not sure how to advise you on any possible next steps, really, except to suggest that perhaps exploring some additional genetic markers and methylation issues might help you for the long term?  You mentioned genetic testing for porphyria, but did you get a full work-up?  A search here on the forum for "methylation" and "mutations" will lead you to multiple discussions regarding the methylation cycle and how genetic testing has helped point some families to a regimen of supplements and/or medications that proved to be more effective for them in light of various mutations and genetic predispositions.  Perhaps that's worth a try?  Finding a well-versed LLMD and/or integrative physician who could be your partner in working through these issues would be a bonus.

Your post was very well-written, so I'm picturing an intelligent, capable and fairly "together" young woman, so I sincerely hope you're finding moments of joy and contentment in your everyday life, despite this tremendous burden.  All the best to you!

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You did mention your moldy house.  You can also search here for mold and find a lot of discussion - it is a recognized environmental trigger at pandasnetwork.org, which is a rich source of info in case you are not aware of it.  Do you have any option even just to try a different location for a week or two, to see if there is a difference (including when you come back)?

I would tend to believe that, with a lot of patience, you could find something that would help your symptoms, possibly only somewhat like Xifaxan has, but perhaps much better.  It would take work and energy that you may not have.  So, lean on us here, ask questions.  This forum is not as fast-paced as most facebook groups, but there is to be a wealth of experience here.

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Thank you both so much for your suggestions and encouragement.

 

MomWithOCDSon: Thank you for the suggestions regarding methylation and genetic markers.  I will look into these things.

 

I’ve been working with a doctor that I think would be considered a functional medicine doctor.  I’ve been thinking about possibly considering working with a naturopath as well.

 

I have had different tests done for porphyria, although I’m not sure if the tests were performed at the appropriate times according to my symptoms.  My urinary porphyrin levels have been normal.  I’m not sure, but for the acute porphyrias, I think it is recommended that urine tests be performed when the patient is having an acute attack for the most accurate results.  In my case, I’m not sure I’ve ever experienced anything that would resemble an acute attack of porphyria.  I do have certain periods where my symptoms temporarily get worse for several days such as constipation, nausea, headaches, random pains in my back, arms, legs, and increased rage.

 

I’m so glad your son is doing better. 

 

bobh: Thank you for your suggestions.  I did try moving from the place that had mold to another location, and I’ve been living in the new location for about a year.  I haven’t noticed any visible mold at this new location, but it’s possible there could be some mold where I can’t see it.  I haven’t noticed any improvements in my symptoms since moving.  It almost seems like my physical symptoms have been getting worse over time.  I’ve been thinking about doing the ERMI (environmental relative moldiness index) test where I’m living, but I’m not sure if the test is reliable.

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Hi Fiddlegrl,  welcome! This is a good forum to be part of.  I'll chime in as well, for much of what you describe resonates, and I can share our experience on a few specific things you brought up.

My DS19 has had the PANS Dx for ~ 4 years, after a sudden onset with very high anxiety, OCD, Very high CamKII, cognitive and neurological symptoms, separation anxiety, inability to do schoolwork, and more recently anorexia with feeling full quickly.  He's quite a bit better, except for miserable water-triggered itching/hot/cold/tight sensations, and a chronic headache which is debilitating depending on sleep disruption. Possibly from: initially unrecognized tick-borne infections, chronic mold exposure. Increased susceptibility due to Ehlers-Danlos syndrome. I'm rarely active here now due to family issues & needing to get done triage/clean/dispose of stuff from our mold-contaminated former home(I wear wearing haz-mat suits, shower after....).

  •  You mention: "Feeling full quickly when I eat, which has resulted in dramatic weight loss".  Been there and much better now!

    My tall DS19 had that last fall, and went from >130# to 114# (at 5'11"), so it was scary.  along with a dramatic worsening of his anxiety, executive function, memory, mental resilience.  High IgE >1500 (normal <150). We're pretty sure it was triggered by unknown mold exposures from classes begun in August (verified by ERMIs). Fortunately someone suggested he be tested for mast-cell activation syndrome (MCAS), and his allergist concurred, and another MD suggested that the rapid satiety and long fullness are symptoms of gastroparesis and MCAS.  The first line treatments for MCAS are antihistamines (H1 inhibitors) & H2 inhibitors (antacids like ranitidine, Pepcid). If those don't help, add montelukast sodium (Singulair, a leukotriene inhibitor) .  Third line are Gastrocrom (cromolyn) before meals, a non-absorbed mast-cell stabilizer that quiets the GI system mucosa, and/or Ketotifen, which is a systemic mast-cell stabilizer.  
    The last two + stopping mold exposures (see below) have been magic for my son!  Less than 2 weeks after starting ketotifen (and after stopping mold exposures) he had some days when he could eat; by 4 weeks he was eating full meals, gaining weight. 
    At this point we do gastrocrom only before high-histamine meals or leftovers.  (should do low histamine diet -- soon. sigh.)

     
  • I've now done the ERMI test multiple times on my own and via a certified environmental hygienist (CIH) who specializes in patients with mold-triggered symptoms. It's much more reliable than air testing, assuming it's done well.  
    What's great about ERMI?  By wiping rarely-dusted surfaces gives you sample the mold that's settled over weeks or months, rather than what happens to be air-borne during a 5-30 min test. More importantly, an ERMI is based on PCR (DNA analysis) of mold fragments as well as live spores. There's usually hundreds of times more mold hyphae fragments than spores, and <0.3 micron fragments get deep into our lungs' alveoli (and thus our blood).  And the mold fragments are covered in the bio-warfare agents we know as mycotoxins, so they cause as many issues whether mold is dead or alive.
             How do you do a good ERMI sample?  Generally I test places w/o carpets, so I use Swiffer wipes.  

    I use the CIH's best practices: 
    Supplies: a new, unopened box of unscented Swiffer wipes, 1 Qt & 1 Gal baggies, and surgical gloves.
    I wash my hands and put on surgical gloves.  I pre-load a set of ziploc baggies -- one swiffer wipe each and I add 3-4" of masking or scotch tape for easy labeling. I prep those into a 1 gal bag, with gloves & a thin permanent marker, and another 1 gal baggie rolled up to collect the dust sample bags. 
    When it comes time to do samples, first I look for what's not been dusted recently. Then I label a baggie, put on gloves, and fold the swiffer wipe to expose a 1/6 section of the fuzzy side, then wipe lightly, turn to expose a clean part, move elsewhere and repeat till all fuzzy parts are full.  I wipe high and low:  tops of picture frames, tops of a lamp, fans, tops of baseboards, outlets, within toy boxes, under beds or fridge, etc. 
    When gray I re-fold, put into the labeled baggie, and eventually download from Mycometrics or EnviroBiomics their order form, "Chain of Custody" form, number the samples, ensure the labels match the description on the form, and send off.  
    The CIH recommends to do LR/K as one sample and bedroom as another, or in a multi-level home, to do one per level.
    NB: If you find actual mold, don't wipe that -- instead get a clean piece of scotch tape, press a piece to that, and tape to a baggie.
     
  • You didn't ask about this, but I found it incredibly validating to do urine mycotoxin testing on my son.  This measures the mycotoxins eliminated through urine, and so indirectly the load within the body.  The two key companies that do this are Great Plains Lab (using the very precise LC-MS/MS) and Real Time Lab (over a decade of experience, older technology but broader set of mycotoxins).  Neither is cheap. However I learned that my son's Ochratoxin A levels were 20x their upper threshold of normal, plus he had elevated levels of aflatoxins, gliotoxins, stachybotrys-related toxins, etc.  This confirmed that we were on the right path.  Repeated tests showed that he wasn't clearing those well on his own, which is why even after we left our mold-contaminated home, new sources of stachybotrys sent him into a bad downward spiral.  And that it really was important to keep him from water-damage mold exposures, reduce sources of inflammation, and to improve his body's elimination. 

I hope that helps.  Keep writing questions.  It helps us to be able to share our hard-won knowledge, to make it a bit easier for others.

Wisdom_seeker

 

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