One Dream

State of the Niki, April 20, 2019

“When you’re healthy, you have a thousand dreams.  When you are sick, you have but one dream.”  - Unknown

So this is the latest:

I’m seeing a new Immunologist, Dr. Isaac Melamed, and a new Rheumatologist, Dr. Stuart Kassan.


Dr. Melamed ordered a total of 46 tubes of blood to be sucked from me, in two sessions (he wanted it done in one, but the tech protested I do not weigh enough.  Thank you, Nikki!)  The office fumbled scheduling more than once; getting it done was more difficult then having it done.  Each draw was supposed to be followed by a saline infusion to re-hydrate me, but in the second case, (because of said scheduling issues,) I did not have time for the infusion.  This may have contributed to a very unpleasant episode of sudden blood pressure drop/tachycardia which occurred on a plane a few days later.  I don’t remember an episode that bad since before my cardiac ablation.  But I digress.

Findings from 46 tubes of blood include: 

- I am now testing positive for Sjogrens ( in addition to my other autoimmune diseases.  This is not a surprise – it commonly co-exists with what I already have going on, and I’ve had dry eyes and mouth (and mouth sores) for years. 

- As before, I’m positive on the C4A, which other docs interpret solely as evidence of autoimmune connective tissue disease.  Dr. Melamed takes a little different view; he believes it is evidence of mold toxicity, which can be from past or present exposure.  I doubt it’s my current apartment in dry Colorado, but ordered the mold tests he advised, anyway.  For this toxic mold he prescribed a FOUL prescription-strength powder which needs to be mixed with water.  (Think chalk in an orange juice base, mixed with a little vanilla.)  I took this for 5 days and felt worse each day.  I think I’m going to discuss it with the office, and maybe give it another go after cleaning out the basement in the Catskills next month, and when I’m not recovering from a cold.  But I’m not sure I will tolerate it.  I can hack the taste, but if there’s no up side to dealing with the extra nausea, exhaustion and heart weirdness, then we’ll have to talk.

- Somehow my thyroid got really whacked (another autoimmune disease, Hashimotos, has been relatively controlled for years, but went pear-shaped some time between when I moved in June, and January).  I’ve changed my meds and think I’m getting back on track now.  The good news – I’ve been able to gain weight for the first time in years!  The bad news – I’m exhausted and, oh, man I gained a little more weight than I’d like for my unstable joints to carry around!


There are other findings I’m unfamiliar with and won’t try to interpret for you.  One is associated with hearing loss & Meniere’s syndrome, others show I’ve had Epstein-Barr and pneumonia in the past…others I have no idea and can’t even find info on the web.


Dr. Melamed has prescribed, (in addition to the aforementioned foul, can I say FOUL, gross, yucky, icky, cough-cough Cholestyramine,) a series of non-Rx meds which I’ve gone down several rabbit holes trying to procure affordably.  Some of you may have read on facebook that I had a dream that I stopped at a roadside porn filming outfit, where they would pay me $283 to be in porn…and all the chocolate I wanted?  I’m pretty sure this dream was about the slimy process of trying to get some of this stuff.  Three are made by Xymogen, who doesn’t allow distrubutors to publish prices.  So finding what the actual price is?  Frustration.  One is a probiotic, another is a potent antioxidant and detoxification support. …they all make sense, intellectually, I suppose.  I just feel like I’ve been down this road many times before, where docs prescribe all sorts of stuff, and I pay for it, and it does zilch to help, but the supplements create their own symptoms, which I’m told are my body “detoxifying” or something like that.   It’s impossible to verify, prove or predict anything.  On the other hand, I do think this doctor has some smarts and experience dealing with the particular situation, and is on the cutting edge.  And I checked; I’m pretty sure he’s not getting any kickbacks from Xymogen.  That’s the practice of medicine.

Dr. Melamed also has a focus on MCAD – mast cell activation disorder – which is thought to be a disregulation behind all the other things, like autoimmune disease and EDS (Ehlers-Danlos syndrome.)  The theory goes thus, as best I understand it:  Over-activation of one’s mast cells disrupts the collagen, which disrupts the connective tissue, which you have everywhere. So this, in turn, disrupts every organ and system in the body.  So of course he prescribed even more mast cell stabilizers/blockers (I already take three.)  Now we’re up to Cromolyn, Singulair, Loratidine, and adding generic Xyzol (which is OTC, but for some annoying reason needs a prescription from the doc in generic form… what?) and Ketotifen. Of course the latter two come from compounding pharmacies and almost none of this is covered by insurance.

In case you want a little more info, here’s a “Dr. Jill” article on EDS and MCAS:

Speaking of compounding pharmacies…for the latest pelvic infection, the medication I usually use (Cortofoam) is in short supply nation-wide, and the other prescription offers are “not FDA approved.”  So I had to wait and have a combo of Clindamycin 10% hydrocortisone compounded.   I’m getting very familiar with my local compounding options, and my pocketbook is, also.

This past 1-2 months I’ve also had a gum infection I can’t seem to show the door, and a nasty bronchial cold.  (Add applying anti-bacterial liquid to gums 20 minutes after brushing to the daily routine, which includes several meds which need to be taken separately from each other and food, and stuff put up my whoo-haa at night, and of course I could spend all day doing prescribed P.T.) So, the usual.  I suppose it’s a good thing that, given all the imaging and blood results none of this seems to surprise my docs, anymore.  And no trained health professional has treated me like I’m a hypochondriac for a many, many years.

Dr. Melamed also feels it’s possible a Lyme infection (or co-infection) could be behind some of this.  Of course Lyme testing is more porn-level sliminess to investigate. So much controversy in the Lyme world.  He has tests he thinks he trusts.  Other docs disagree.  I’ll do them because I’m an agreeable patient.  And I always have hope.

In addition, Dr. M. sent me out the door with instructions to eliminate “grains, tomatoes, sugar, citrus, nuts, and dairy.”  Then he passed me off to his (not highly medically trained) assistant, who glanced at it, said, “Just FYI, by ‘nuts’ he mostly means peanuts, so if you’re like, drinking almond milk, that’s probably OK.” and left.  Naturally I spent the following days buried in research.  What diet, exactly, is he leaning into?  Anti-inflammatory, low histamine?  Or some devilishness of his own?  In retrospect I think it’s a little cray-day for a Doc to send a patient out the door with such vague instructions concerning a huge swath of the American diet.  Grains?  What, exactly is considered a grain?  And what am I to eat, instead? 

I’ve called the office to see if the staff nutritionist has a clue.  I do believe that especially at this stage in life, (“mid-life”) what we eat may be among the most important decisions we all make every day.  After all, I just heard from 23andMe that I have a 41% chance of developing Type II Diabetes, as many of us do.  Colin is already clearly also at risk for this.  There is scientific evidence that reducing certain foods reduces inflammation in the body.  There seems to be no final word on anything, but this may be a start:


Dr. Kassan is the local rheumatologist people see for EDS.  He has multiple awards, speaks nationally, etc.  I waited months to see him, and he runs notoriously behind schedule.  (My appointment was at 1pm, I called several times and was told to come at 3:30, and still waited until 6:30.)  He’s a pleasant enough fellow, but not sure he’s worth the wait.

Dr. Kassan has a couple things to say:

In his opinion, I’m “112% positive” on the Beighton score, meaning I have hypermobility type Ehlers-Danlos syndrome (hEDS.)  When the criteria changed a couple years ago, another doctor nudged me over into the “Generalized Hypermobility Syndrome” category.  Not that it changes how one feels or is treated, but labels do sometimes matter.  In his opinion, my joints far surpass the motor tests for EDS, plus I share all the “right” auto-immune diseases which are common with EDS. So…yay?

He also seemed quite impressed at how few surgeries I’ve had, considering the Orthopedic diagnoses.  (I told him I avoid surgeries as best I can, using good P.T., pain management, and massage.  The heart and knee were somewhat unavoidable.)

Like any good rheumatologist, naturally he wants more X-rays, a bone density test, and, of course, more blood.  I’m sure all my doctors are secretly vampires.  It’s a vast vampire conspiracy.  Based in China.  Or Russia.  Maybe Romania.


There is some good news:

My physical therapist, Kathryn Proctor, is hands down the best body practitioner I’ve seen in over 20 years.  About half her patients are like me – hypermobile with some heady combo of genetic and autoimmune involvement – and she knows her stuff.  She gently coaxes my spine (or hip, or ankle, or whatever) back to something like normal once a week, and doesn’t complain when I mess it back up again the following week.  She never asks me to come in and do exercises – she’s all hands-on, correcting issues, and giving great advice.  Insurance is currently paying for an hour a week and it’s some of my most treasured time, because I leave her office in less pain than when I walked in.

Overall, I’ve been really happy with the high quality of care I’ve experienced in Colorado.  It feels to me like by the time the doc sees me, they still have some energy left for me, as opposed to in NY where the city and all its trappings seem to have sucked the life out of them before I darkened their door.  The pool of knowledgeable folks is large enough to have selection, but small enough to where practitioners have mostly heard of one another.   

I feel supported in a way I haven’t in a very long time.  It’s the little things, like I drive up to a spot at the clinic and walk the short distance in, the doctor’s office is clean, the receptionist makes me feel welcome, the nurse looks me in the eye and listens to every detail, the doctor interviews me dressed, then spends a little extra time after the examination.  The exam skirt is fabric instead of paper.  The pharmacy calls me after EVERY new medication, just to see how I’m doing.  Little things add up.

And there’s the sunshine.  I finally have vitamin D levels in the normal range!  (I do take 5000iu per day, too.)  And the psychological boost is real.   Having outdoor space, is amazing, and a washer and dryer at home saves me a whole day of energy doing laundry every 10 days or so. And I absolutely adore my hammock.

And research is coming.  A genetic mutation has been found which links three of my main “conditions,”  EDS, MCAS and POTS.

But I’m still generally exhausted, in pain with brain fog, digestive issues, infections and soforth, and having episodes of things like near-fainting, tachycardia, sweating, possible allergic reactions, blah, blah, blah.  If the hope of moving out West was complete recovery, it has fallen quite short.  But I never had that hope.  I swear.  Not even a little.

Next steps? As always, debating what the best “bang for my buck” is going to be, even moment to moment.  Is the best way to spend this next 20 minutes of my limited energy filing taxes, working on that song I’ve been trying to write for the past year, on the phone with a friend, or researching another alternative treatment which could pay off in increased energy (and more time for the previously mentioned things…)  down the road?  Is the best use for that bit of money a real estate investment, a massage, a class on music media, or a bunch of unproven supplements which could improve my productivity down the road?  How about stem cell, or ozone therapy?  A fecal transplant?  

I try to digest a waterfall of information by mouth every day, while not getting drawn into the water.  









Photos by Emory Collinson        © Niki Naeve 2015