Another Dr. C Appointment

I had another appointment with my ME specialist doctor today, who I refer to in this blog as Dr. C.  I'm going to have to keep this update brief with, essentially, bullet points only:

Dr. C states that a colleague in Belgium has developed a drug specifically to treat enteroviruses, which Dr. C said would be the big breakthrough that ME patients have been waiting for.  (This of course assumes that ME is caused by enteroviruses, which Dr. C is 100% certain of)  The drug is now in development by a European drug company, but it is supposed to take 2 years from now to finally hit the market. 

The animal testing for this drug had very good results.  It eliminated all traces of enteroviruses in the bodies of mice. Dr. C asked the inventor if it also eliminated enteroviruses in the brains of the mice and he did not receive an answer.  This is a concern.   
                                                                            _______________

On a personal note, Dr. C stated that the pain under my left rib, he believes, is pleurodynia caused by the coxsackie B virus.   Pleurodynia is basically just a sharp pain in the chest, usually caused by coxsackie B.  We discussed the fact that a few years ago my coxsackie B test results showed very high titres for the B5 strain of coxsackie, and they have been dropping slowly ever since.  This is a common pattern for coxsackie B, to have the titres slowly drop back down over the coarse of about 5 years. 
                                                                          _______________

I also confessed to Dr. C that I've been taking mints that have caffeine and B vitamins for a daily boost, and that I have generally felt better since starting to take them (no surprise there), but I asked if he would be concerned these mints would lead to a major collapse or crash.  He said that as long as I didn't have any side effects like heart palpitations, he was OK with me using the mints in moderate amounts (consistent with typical coffee consumption of caffeine.)

G.I. doctor appointment

I've been writing about SIBO here on this blog since late 2017.  I think I'm now gaining better clarity:  I'm at the point where I've seen enough improvement that I could probably live with my symptoms as they are currently. The symptoms have improved enough that I seem to be symptom-free about 4 or 5 days per week, with mild to moderate symptoms the other 2-3 days per week.  (This assumes the symptoms don't get worse again, which is a big assumption.)  There's no doubt, this is a decrease in quality of life from my pre-SIBO state, but it's better than late-2017, early 2018. 

How did I get here?  I took two 1-month courses of Xifaxan and Neomycin, which improved symptoms but did not eliminate them.  After that treatment, I took a regimen of herbal SIBO treatments recommended by my doctor (Dr. M), but I eventually stopped because those treatments seemed to be causing more GI distress, not less.  I have been taking digestive enzymes and an Allimax (a garlic extract) tablet with each meal since about January. That, combined with sticking to an anti-FODMAPS diet, and not snacking between meals (waiting at least 4 hours between meals), seems to have returned some of my quality of life to me.  I also use LDN for motility, and a soil-based probiotic.  If I stray from the anti-FODMAPS diet, I can usually tell immediately.  The connection is very clear.

Anti-FODMAPS diets allows most vegetables, about half of all fruits and nuts, and nearly all meats, oils, and fats. 

I went back to the GI specialist yesterday (Dr. L) and reported everything above and asked if there was anything else to test to make sure we aren't missing anything -- any other explanation (that could hopefully be treated more easily.)  He said he was very confident that we haven't missed anything.  He stated that if my symptoms worsened again, I could come back again in a few months and ask for one of three additional options:

1.  CT Scan (I'm NOT doing this)
2.  Scope of the stomach, intestines and colon.  He said this is a significant procedure because the doctors need to send the scope in through both ends, under sedation.
3.  SSRIs.  Dr. L said that for unknown reasons, people who have inflammed and sensitive bowels, show improvement on SSRI drugs (a class of anti-depressants.)  Dr. L stated that a side effect of SSRI drugs is that they calm the nerves in the gut.  When these nerves are overactive, people experience pain and discomfort in the gut, and SSRIs calm them.  (I'm not too keen on this idea either.)

The plan for now is to wait a few months and determine if I can simply manage my symptoms with diet, enzymes, Allimax, LDN, and probiotics.  It seems to be a livable solution at this time.  If symptoms worsen again, I'll go back to Dr. L for #2 above, and consider (but not likely try) #3. 

Appointment with Dr. C

I had my latest appointment with Dr. C, a well-known ME specialist in California, yesterday. 

SIBO

The conversation quickly turned to SIBO because of the abdominal symptoms I reported to the nurse.  Dr. C said SIBO is a very serious problem for a large number of his patients.  He states that the enteroviruses which he believes causes ME often take up residence primarily in the GI tract.  When this happens, the viruses can shut down the functioning of the autonomic nerves which regulate the waves of contraction (migrating motor complex, or MMC) which normally push food through the small intestine.  The food then stays in the small intestine for too long, essentially stagnating, which leads to the overgrowth of bacteria in the small intestine.  Most of this information was already known to me--it is covered in SIBO books and websites--except for the theory that enteroviruses are the cause of the failing MMC.

Dr. C essentially said that SIBO was only recently discovered and there is no definitive cure (again, something I knew but was interesting to hear from a real, live person).  He has had some patients who couldn't pass BMs for two weeks at a time.  He said that sometimes he prescribes azithromycin, not because of its antibiotic qualities, but because a side effect is that it causes diarrhea.  Dr. C in fact prescribed me three weeks of a Z-pack.  Frankly, this sounds like a temporary solution to the low motility problem and I'm not sure if it would be worth taking antibiotics unnecessarily.  I don't think I will fill the prescription.  [4/26/18 edit: I changed my find after coincidentally reading about low-dose Z-pack as a motility solution for MMC issues in SIBO the day after the appointment.]

As an aside, Dr. C also mentioned that his SIBO patients who qualify for IVIG tend to become regular for the first two weeks after their IVIG infusion.  Somehow the correction of the immune system triggers the MMC to reactivate for a couple of weeks.  

Dr. C also wonders whether, after they find a cure for ME, patients' GI tracts will return to normal function or if the nerve damage is permanent.  He said that he suspects it will return to normal but he may have been saying that because of the worried expression on my face.  

Other Treatments

It is rare for me to visit Dr. C and not walk away with a new treatment to try, but at this time he is out of ideas for me (except to give dihydroquercetin another try).  He did however, give a run-down of the promising leads in ME treatment research in general.  Dr. C said that four or five drug companies are all working on retro-viral drugs currently and that this area of research is a "hot new topic" for drug research, or words to that effect.  (He gives some version of this same speech each time I visit, and I understand that the process of researching and developing ARV drugs is very slow, so I take it with a grain of salt.)  He also said that anti-viral drugs can be specific to a certain type of virus, giving the example of a Hepatitis C drug that only works for Hep C and not Hep B or HIV or anything else.  Presumably the drug companies are working on something more broad spectrum, or else what are the chances their work will help ME?

Usually when Dr. C mentions other ME researchers, he does it to contrast his theory with theirs, explaining why he thinks he will be proven correct (not them).  This time, however, he gave high praise to the work of Ron Davis and Mark Davis and their work to reactivate T-cells.  (This was discussed in a Health Rising article in December, 2017).  He thinks their work could be a big breakthrough for us.  

Personal Exam

As usual, Dr. C noted that my lymph nodes are swollen (he was surprised they didn't hurt) and my throat looks red and raw.  I've had these chronic issues for so long I don't even notice them any longer.  They are truly the least of my concerns and in fact I forget they are even there. 

When Dr. C first walked into the examination room he immediately said, "you've lost weight."  I hate to hear that because I feel like I'm getting too low, and it was scary to think that a person who sees me only twice per year could tell immediately. I've only lost 10 pounds since I last saw Dr. C, but apparently it was enough to be noticeable.  I really need to update the picture of my face on my blog because I look nothing like that anymore.  

Overall, I came away from the appointment feeling disappointed.  Of course, all of us in the ME community know that even if they find a cure, some of the damage that ME has already done to our bodies may be irreversible.  This is mentioned from time to time on message boards.  I know it's true but I try not to dwell on it.  Hearing it from Dr. C made it seem very real and that saddened me.   

My GI doctor's take on SIBO

I had an appointment with a gastrointestinal specialist (Dr. L) today to discuss the results of my recent positive SIBO breath test.  Mostly I was curious if the diagnosis of SIBO is taken seriously in "mainstream medicine" or if it's considered a sort of "fringe" diagnosis.  I also wanted to know how he would propose treating it, to get a second opinion.  (Dr. M. has suggested treating with the antibiotic Rifaximin.)

Dr. L said that he usually only discusses SIBO after he has ruled out all other potential causes of symptoms.  "SIBO comes last," he said.  He said that a few years ago, he used to be more interested in SIBO and would jump to a SIBO diagnosis more often, but he also said he considers it a bit of a "wastebasket diagnosis."  He explained that he used to treat SIBO with Rifaximin but he said that patients almost always came back in a few months when the SIBO had returned.  "...And I can't just keep prescribing you Rifaximin," he said.  Apparently, it was for this reason--futility--that Dr. L was less likely to jump to a SIBO diagnosis in recent years. He also suggested that the test results can be questionable.  Again, I wish I had asked more questions to clarify this, but I always seem to think of these questions when I'm driving away.

Dr. L said that when he does treat SIBO, he prefers probiotics (to "overwhelm the bad bacteria with the good bacteria") to antibiotics, although he is not adverse to trying antibiotics once.  Despite his reluctance to diagnose SIBO before other conditions have been ruled about, he did admit, without prompting by me, that my symptoms do seem consistent with SIBO.

In the end, he sent me away with some samples of VSL#3 and told me to try to treat if with probiotics, and if I still didn't feel better in a few weeks, I could call back. However, he said that if I call back, he would first have to rule out other possibilities by either doing a CT scan of the abdomen, and/or scopes, and/or stool sample testing.  (My feeling is these would probably not lead to anything useful.)  Previously he had ordered an abdominal ultrasound and some scopes and these were completely negative.

I have an appointment back with Dr. M (the doctor who originally diagnosed me with SIBO) on Monday.  I'm going to see if she can get me approved for one round of Rifaximin to see if it helps at all.  If not, I will try the probiotics/diet/herbal antibiotics route. 

Searching for G.I. answers

I keep thinking my G.I. symptoms have gone again because they will disappear for as much as a week at a time. But then they comes back without warning.  This has continued since late July.

I saw a G.I. specialist last week and, get this, he thinks it is costochondritis!  I don't need a medical degree to know with 100% certainty it is not costochondritis.  He thinks it's costo because I told him that the area of most discomfort was just below my left, front rib cage.  But, look, just because that's where the discomfort is often the worst, costochondritis doesn't explain why the discomfort is often spread throughout my entire abdomen--much of which is far from my ribs. 

In any event, the doctor wasn't completely sure of his diagnosis because he also told me to try Zantac for 30 days in case the issue is actually related to overproduction of stomach acid.  (After the appointment I searched Zantac on a few popular ME patient forums and found that it is actually taken by some ME patients who believe they have mast cell activation.  There's mostly anecdotal evidence that it may calm mast cells, and it is often prescribed by at least one semi-well-known ME doctor for suspected mast cell activation)  So I started taking Zantac about a week ago and so far haven't noticed a difference.  (Also, so far, I haven't noticed any difference in my shortness-of-breath symptoms, proving perhaps once and for all, that my SOB is not caused by GERD as one doctor suggested.)

The doctor also ordered an abdominal ultrasound, and blood work to check iron, lipase, ferratin, along with CBC, Cardio CRP, and comprehensive metabolic panel.  I doubt this will yield any useful results, but it is part of the process for me (any many other patients) when a new symptom arises or an old symptom suddenly gets much worse. 

If I arrive at the date of my follow-up appointment in January and the G.I. specialist tells me the test results are all negative, then I'll probably conclude that this new symptoms is ME sending its inflammatory cytokines at a new area of my body. 

My infectious disease specialist dismisses EBV results

I visited an infectious disease specialist this week (Dr. P), in part because I had heard that her referral would be a necessary step in obtaining approval for IVIG, which I've been hoping to be prescribed.  It didn't go as hoped.

As background: this was the same infectious disease specialist I consulted in 2011 when I was still in the "acute phase" and didn't yet have a diagnosis.  I remember being really confused and scared at the time.  In the end, she suggested I might have post-viral syndrome.  I thought maybe, upon seeing me again after 6 years, she would be surprised that I still hadn't recovered and perhaps become extra motivated to help find solutions.

I brought copies of my labs and she reviewed them.  She had two conclusions: (1) the four positive Epstein Bar Virus (EBV) IgM results are, according to her, "false positives," and (2) even if they are not false positives, there is no point in continuing to take Valacyclovir.

This first conclusion about "false positives" shouldn't have been surprising to me.  When I saw the first positive EBV IgM test result back in January, 2017, I thought it must be a mistake because I had already had EBV in the past and it was my understanding that once you've had a particular infection, your immune system will never produce IgM antibodies to that pathogen again.  And it certainly won't produce IgM antibodies for months or years on end.  However, after one of my other doctors, Mr. M, started taking these test results seriously, I suppose I concluded that perhaps I didn't fully understand how IgM antibodies work.  Maybe I had oversimplified it.

Now, after having consulted with the infectious disease specialist, I think she is probably correct.  But it still doesn't answer the question, why am I producing these consistently false positives?  Is there something about my blood that makes these false positives happen, and is that, itself, indicative of a disease state?  The tests were conducted by two separate labs which use different screening methods, so why am I testing positive at both?  Dr. P could only respond vaguely that "EBV serology is complicated."

In the end, Dr. P offered to order a PCR blood test to be absolutely certain that I don't have an active EBV infection.  PCR screening is, more or less, the "gold standard" for viral detection.  Rather than test for the presence of a virus indirectly, by looking for the immune system's response to the virus (antibodies), PCR screening looks directly for the virus itself.  I agreed that I wanted to know for certain, even though Dr. P said she herself was already certain.  I haven't given blood yet for this PCR screening, but I will soon.

There's no point yet in discussing Dr. P's second conclusion that taking Valacyclovir is pointless for EBV infections.  I have my doubts about that conclusion (it feels like the "standard medicine" approach, which puts on blinders when it comes to complex disease states like ME).  But I'll wait to see what the PCR screening reveals before I even consider that issue further.  If Dr. P is right and I don't actually have active EBV, then I can stop taking Valacyclovir immediately and don't need to make any tough choices.

Dr. P also made it clear that I have absolutely no hope of getting approval for IVIG because of my total IgG count which, despite being low in one subclass, is quite "robust." From everything I've been reading lately about how difficult it is to be approved for IVIG, I think she is probably right.  I'm going to move on from that quest.

Gut issues went from 3 to 10

I visited my GP last week about something unrelated to my gut, but I happened to mention my ongoing problem with tenderness throughout my abdomen.  As I wrote about before, the physician's assistant (PA) who initially diagnosed it said that the cause of the discomfort was likely the pancreas and/or spleen due to my ongoing Epstein Barr infection.  The pain and tenderness started in the last week of July and has been intermittent since.

My GP palpated the area where the pain is the worst (just under the bottom of my left rib cage) and she insisted that it is actually my stomach.  Thinking back a couple weeks earlier to a Dr. C appointment, he suggested the same thing but I didn't pay much attention.  And now, thinking about the pain and tenderness more, I'm fairly certain my GP and Dr. C are right -- it's the gut, not the pancreas.  (My reasons are too many to cover fully here, but one of the main ones is that, on bad days, the swelling and tenderness is all throughout my entire abdomen, from the bottom of the rib cage to the pelvis, both sides.)

For most of my life with ME/CFS (since 2011), gut disturbances have been pretty far down the list of severity of symptoms (notwithstanding the initial onset period).  That's not to say I didn't have gut problems, but I usually had more painful or debilitating symptoms that I had to deal with.  Now it seems the gut disturbances are the worst--maybe tied with the overall fatigue.

Right now, it almost feels like my entire abdomen could burst out of the skin.  The whole area feels swollen and bloated.  "Bodily functions" are a little off, but not in a way that seems to match the severity of the pressure I feel.  No loss of appetite.  I've now spoken with three doctors about this issue and none of them have anything useful to add or seem particularly concerned. (That's good I guess?)

My GP wrote a script for an acid-reducing medication but I don't feel that over-production of acid is remotely close to being the problem.  I didn't fill the prescription.  In the meantime, I've tried various diet alterations (although not in a very systematic way) and can't find any obvious cause in food. I might have wondered if there's a connection between the gut issues and my increased dose of Valacyclovir (3G/day), but the problems started months before the increased dose.   

I have an appointment with a gastroenterologist in the fourth week of November, and I am hoping to obtain some clarification from him.  Could this be just another strange symptom of ME/CFS that I have to live with until it mysteriously goes away?
                                                        ___________________

In the mean time, in light of my ongoing positive Epstein Bar Virus (EBV) IgM tests, I went back and looked at my old lab results.  I knew that I had a positive test for EBV IgM (active infection) back in 2005, way before I got ME/CFS.   And I also thought I knew I had been thoroughly tested for EBV since falling ill with ME/CFS in 2011.  But when I looked back at my records of blood tests where EBV was tested post-diagnosis (twice in 2012, and once in 2013), I saw that the doctors only ordered tests for IgG antibodies.  My memory was only that IgG was positive, which led me to assume we'd also tested IgM and that was negative.  But actually, until this year, nobody ever tested my EBV IgM titers.  How could this oversight have happened?

So now I'm wondering if I've had positive IgM titers for EBV for a very long time.  I feel frustrated, but also a little hopeful that if I can somehow treat the EBV and bring IgM titers back in range, I might feel a little better.  So far though, that's not going so great.  I have an appointment with an infections disease specialist in two days.  I'm doubtful she will be of much help, but I'm going to give her a chance nonetheless.

Dr. C prescribes Viread

I had my latest appointment with Dr. C last week.  Dr. C is my ME specialist doctor, who I've written about under the Equilibrant Label in this blog.

Viread

Dr. C prefers to treat ME primarily with oxymatrine, and secondarily, he prescribes various anti-viral prescriptions.  Lately, he's been prescribing the anti-viral drug Viread (tenofovir).  He states that about 1/3 of his ME patients who try Viread have experienced improvements.  In a few cases, the Viread patients have achieved remissions, but this is the exception.

Viread was developed and approved to treat hepatitis B and HIV.  Prescribing it to ME patients is an off-label use.  It can be toxic to the liver if used for years, and so Dr. C insists on regular kidney function tests for those who are going to try it.

I agreed to try it.

Unfortunately, however, I didn't think through my plans during my appointment, otherwise I would have suggested I delay taking Viread.  I recently started taking a fairly high dose of Valacyclovir to deal with chronic Epstein Barr Virus (EBV) -- 1G 3x/day.  At this time, I don't want to add another drug that could tax the liver and/or kidneys at the same time.  The higher dose of Valacyclovir is supposed to last 3 months, at which time I'm supposed to return to a maintenance dose.  My plan now is to start Viread after I go back to the maintenance dose of Valacyclovir.

Lab Results and Pancreatitis 

Yesterday I received the results of another set of blood tests given last week.  Yet again, my IgM antibodies for EBV were very high (about 6 times more than the upper limit of the reference range.)  IgG antibodies were of course very high as well.  This marks the 4th such positive test dating back to January.  

The blood sample was given within a week or two of starting the increased dose of Valacyclovir, so I'm still hopeful that the Valacyclovir will help bring this condition under control.  It is really starting to worry me.  Chronic EBV infections can lead to cancer and organ failure, among other serious health problems.  I need to find an effective treatment.  Health-wise, I'm still able to bring myself into work each day, but I have no energy for anything else.  

In the last week of July, I came down with pancreatitis (inflammation of the pancreas), which is probably related to the chronic EBV infection.  I've told both of my ME doctors, Dr. C and Dr. M, about this but they didn't seem too concerned.  Dr. C palpated the area and didn't say much about it other than it's a common symptom for people with ME and he's surprised it took this long (about 6 years) for me to develop this symptom.   

Today after a particularly fatty lunch, the pain in my pancreas (and to a lesser extent, through my abdomen) got much worse.  I decided to see my GP about it and perhaps ask for some imaging.  This is probably unlikely to lead to any helpful treatments, but I want to rule out any serious problems.  Most likely, this will end up being just another symptom that gets added to my rotating list of ailments.  

My ongoing plan to treat EBV; and possibly give methylation another try

I visited one of my doctors (Dr. M) today and discussed July's lab results showing that I've had an active Epstein Barr Vivus (EBV) infection since at least January.  There has been no sign of the chronic EBV infection getting any better since my last post.  I continue to experience periodic tenderness in the pancreas and spleen area, and intermittent swollen lymph nodes.  And of course a flu-like feeling that comes and goes.

I made a push for inter-venous immunoglobulin (IVIG) to help treat chronic EBV, or, failing that, inter-muscular immunoglobulin injections (IMIG).  Dr. M apparently doesn't know how to obtain insurance coverage for IVIG.  She referred me to an immunologist.  She says this particular immunologist, who is affiliated with our local university, is one of the best in the region.  Naturally, I couldn't get an appointment with him until early December, so it becomes another waiting game.

In the meantime, we're increasing my Valacyclovir dose from 1g twice per day, to 1g three times per day.  The goal of this is to get closer to Dr. Learner's recommended dosage of 1g 4x per day for chronic EBV patients.
                                                                    _____________

Dr. M also said she recently attended a doctors' seminar where methylation was the topic.  The presenter was a doctor who has been experimenting with methylation for lyme and ME patients.  He apparently found that many patients aren't achieving any results because one of their genetic mutations leads to run-away oxidative stress, which must be dealt with before methylation can be addressed.  My eyes started to glaze over at this point because I have spent so much fruitless time and energy on methylation in the past with no significant results.  In fact, at times, I'm pretty sure methylation made me worse. Besides, I thought the whole point of methylation was to increase glutathione production, which in turn cleans up free radicals - oxidative stress.  So now Dr. M is telling me you have to clear up oxidative stress before you can do the thing that clears up oxidative stress?  This seems like a chicken/egg issue, but I probably just don't understand.

I agreed I would email Dr. M. my 23andMe raw data, which she will run through some sort of new program (not Genetic Genie) and this program will produce a "methylgenetic nutrition" report.  Then, Dr. M says we can use that report determine (1) if I even have this runaway oxidative stress problem, and if so, (2) how to treat it.

I'm a little reluctant to get back into methylation again, but if Dr. M can guide me through the process, I'd be more inclined to try than to resume experimentation on my own as before.

MRI mostly negative, but huge sinus cyst visible

Last month I wrote about my consultation with a neurologist because of ongoing, intermittent pain in my fingertips and big toes, and a feeling of decreased coordination in my tongue.  The neurologist said that her first step would be to order an MRI, with and without contrast, of the brain and brain stem.

I submitted to the MRI about two weeks ago.  I was having a fairly good health day on the day of the exam - slightly above my baseline.  It was two hours of sitting absolutely still in a long tube.  The technician placed noise-canceling headphones over my ears and allowed me to listen to a Pandora music station of my choice.  I mostly rested in a sort of meditative state, listening to music, because what else can you do?

I received the results of the MRI on Friday.  They were negative.  The doctor and I clicked through the images on her computer one by one and discussed each individually.  It was interesting to see my own brain and eyes in such detail -- using my brain and eyes.

There were no signs of a brain tumor or MS, or any other abnormality.  I had read that the MRIs of ME patients sometimes show lesions, not unlike with MS patients, but in a different pattern from the signature MS pattern.  There were no lesions seen in my MRI.  There were also no signs of diminished white matter or any of the other abnormalities seen in ME patients in the Stanford study.  (See also, here.)  Although, for this second criteria, it's probably unlikely that the neurologist would have found or noted "a 7% reduction in white matter," for example, unless she was specifically looking for that or comparing it to controls.

My brain stem was normal.  The neurologist said that I have more spinal fluid surrounding my brain stem and spinal cord than most of her patients, which she said is good.  She was of course looking for issues that were totally unrelated to ME, such as when peoples' disks bulge and press on the spinal cord.

The next step is to submit to nerve testing by another doctor.  I think this is very unlikely to lead to any answers, but I will go thorough with it anyway.  I have heard of some ME patients who had significant findings from nerve testing.

The MRI did find a cyst in my sinuses.  I could see it clearly in one of the MRI images.  It seemed HUGE -- like the size of a small pearl onion.  But both the neurologist and the technician who prepared the report described it as an "incidental finding."  They don't recommending doing anything about it.  Google says most such cysts go away after a few years.  Still I can't help wondering if this is why I started suffering from daily sniffles and post-nasal drip a couple of years ago, when I previous had no sinus problems.

First appointment with a neurologist

I had my first appointment with a neurologist today (Dr. L), due mostly to my ongoing hand and foot pain.  I told her that dating back to at least February, on a nearly daily basis, I have pain in my fingertips.  The good days are days when the pain is only in my fingertips and not severe enough to bother me when I type (like today).  As it gets worse, the pain moves into my palms, and also affects my toes.  When it gets still worse, it moves into the back of my tongue, making it more difficult to speak and swallow solid foods, and also into my eyes (or more likely the nerves behind my eyes), making it uncomfortable to move my eyes or refocus them.

First the doctor asked me a long list of formulaic questions, such as whether I had fallen and hit my head.  These seemed routine and pointless.  Then Dr. L had me perform a number of tests for dexterity and coordination, not unlike a roadside sobriety test (walk on a line, heel-to-toe, heel-to-toe).  I passed all of these test because my issues are more about pain than dexterity (although the latter does seem to come with the former sometimes, or on very bad days.)

Based on my description of symptoms in various parts of my body and on both sides (bilaterally), Dr. L said the issue likely originates in my brain stem or upper spinal chord.  That is the only logical explanation for symptoms that affect both sides of the body and in such diffuse locations. This was not a surprise to me having been a part of the ME/CFS world since 2011 and having read many theories about ME/CFS potentially originating in the brain stem.

Dr. L ordered an MRI to rule out Multiple Sclerosis and a brain tumor. although both are very unlikely.  The MRI will be with contrast, which requires injection of a dye into my bloodstream.  I know some ME/CFS patients have reacted badly to the dye, but I have had a CT scan with contrast since first coming down with ME/CFS and I didn't react.  I hope this time will be the same.

Dr. L stated that if the MRI fails to produce any remarkable results, she will then probably order blood work [total waste of time] and possibly also nerve testing [possibly fruitful.]

I'm aware of Dr. Cheney's work with MRIs of ME/CFS patients which showed they have brain lesions.  My understanding is that the lesions were in a different pattern from those found in MS, but nevertheless distinct from what one would expect to see in healthy controls.  So it will be interesting to see if Dr. L notes any such brain lesions in my MRI.  I should have the results by the 3rd or 4th week of July...

I still have active Epstein Bar Virus infection

I went to the doctor yesterday (Dr. M) and received the results of some follow-up blood tests. Epstein Bar Virus (EBV) IgM antibodies were still many, many times higher than the normal range.  The blood for this most recent test was drawn three months after the initial draw (from early January), so I expected the antibodies to have returned to the normal range.  Instead, they had hardly dropped at all. We're going to test again in another couple months with a new lab just in case the lab we used for this last test is prone to false positives.  Dr. M said my EBV IgM titers are the second highest she's ever seen.  She's surprised I'm out walking around.

We doubled my dose of Valacyclovir from 500mg 2x/day to 1gram 2x/day.

In the meanwhile, I continue to have symptoms of reactivated Shingles, except with headaches and brain fog this time.  At first the pain and sensitivity was mostly in my right hand, but now it is on the right side of the torso in the same areas as when I first had Shingles in July, 2016.  There is no visible rash this time (yet).  The pain/sensitivity in the torso is much less severe than last time but the hand pain is much worse. I'm hoping the increased Valacyclovir will help that too.  In theory, it should.

Both EBV and the Shingles virus (VZV) are in the herpes family of viruses.  I've read that people with low Natural Killer Cell (NKC) function, like me, will continue to deal with re-activated herpes family viruses indefinitely unless they find a way to increase NKC function.  There are no known sure-fire ways to increase NKC function -- only theories and un-replicated studies showing marginal effects. Astragalus root is one supplement that is mentioned sometimes.  I'm already taking Astragalus root as the main ingredient in Equilibrant.

I've also read that Transfer Factor can also help with NKC function, so when Dr. M recommended it, I agreed to try that too.  So I'm going to begin taking transfer factor, at least until the EBV and Shingles get under control, and maybe for maintenance after that.

Dr. C Appointment

I haven't had a Doctor C appointment in over a year, but I always make it a point to draft a full write-up of my appointment because (a) I want to remember what Dr. C said, and (b) I know there is significant interest from a certain subset of other patients about what Dr. C is recommending.

Unfortunately I'm having a bad health day with brain inflammation and peripheral neuropathy, which makes it difficult to type.  For that reason, I'm going to do an abbreviated summary of my 50 minute appointment rather than a full write-up.  I will try to supplement this post with a more complete write-up if/when I can.

As many people who follow Dr. C's work know, Dr. C is a strong proponent of his proprietary immune-modulating supplement called Equilibrant. His recommended regimens often include taking Equilibrant in addition to one or two other immune modulating drugs or supplements.  With each additional drug/supplement he tries, he finds that a certain % of his patients respond to it.  Those patients continue to take that drug/supplement, while Dr. C moves on to find something that will help the others.

The latest is a more highly absorbable form of the antioxidant bioflavinoid called "quercetin"--this time in the form of dihydroquercetin.  Here is the exact brand and dose that he recommends.  In addition to its anti-inflammatory properties, it helps push Th2 dominant immune systems back toward Th1 and tends to calm overactive mast cells.  (This was the first time I had heard Dr. Chia talk about mast cells.)  I decided I'm going to give it a try.

That's all I can write for today.  I will try to write more later.

Latest Doctor Appointment

Last week I visited one of my doctors, Dr. M., who specializes primarily in Lyme disease but also treats other hard-to-treat conditions such as ME.  Our focus for this appointment was treating my hypothyroid symptoms.  We started by reviewing my recent laboratory blood test results testing thyroid hormone levels.  My levels of T3 (the active thyroid hormone) were optimal, while my levels of T4 and TSH (essentially, precursors to T3) were low, out of range.  Dr. M seemed concerned about this and wants to try to bringing my T4 levels within range as well.

I asked why it was necessary to bring T4 into range when T3 (the actual, active thyroid hormone) is optional.  My understanding is that, under normal circumstances, when one is not taking thyroid medication, the body produces TSH, which stimulates the production of T4, which in turn stimulates the production of T3.  (This is a bit oversimplified, as discussed below.)  So I wondered if T3 is optimal through medication, why do we need to bother with the precursors.  Why not "cut out the middle man"?

Dr. M asked me if I was still experiencing hypothyroid symptoms.  I admitted that I did still experience at least one symptom: extremely cold hands and feet.  Not just a little bit cold, but almost shockingly, painfully cold sometimes.  I had never considered this before.  Why, if my T3 levels are optimal, do I still have such cold hands and feet.

Dr. M explained that patients will still experience hypothyroid symptoms unless T4 is also brought into a normal range.  She referred me to a book called: Why Do I Still Have Thyroid Symptoms When My Lab Tests Are Normal? by Datis Kharrazian.  How's that for a specific title?  I'm not sure if I'm going to read the book, but regardless we are lowering my T3 dose and increasing my T4 to see if we can find a better balance that reduces symptoms.

                                                                 _________________

Based on recent emergence and prevalence of histamine-related symptoms, we're beginning to suspect that mast cell activation may be present.  Dr. M states there is a test for mast cell activation, and we agreed that I should submit to this test relatively soon.  I plan to undergo a mast cell activation test in the next 3 or 4 months.  If the test is positive, it will be a significant clue to determining which subset of ME patients I fall into.

                                                               __________________

Finally, Dr. M suggested I consider an emerging treatment for chronic infections called Low Dose immunotherapy, as pioneered by a Dr. Ty Vincent.  This is apparently a somewhat novel approach and I'm not inclined to play the role of Guinea pig at this time.  I will probably not try this treatment.

I have.... shingles

Over the past two days I've been writing about sensitive patches on my skin.  Up until last night, there was no visible rash.  Then last night a rash developed in two of the three areas where I suddenly have sensitive skin: my abdomen (right side) and lower back (right side.)  My right thigh remains free of visible marks, but still remains very sensitive to touch. In the meantime, another sensitive patch has developed under my right arm (triceps area), and another painful area (which feels more like a bruise, i.e. not on the surface) has developed under my right arm (lymph node?)

I was able to secure a last-minute doctor appointment this morning with my general practitioner, Dr. L.  She took one quick look at my rashes and said "Yep, it's shingles."  Shingles is when the chicken-pox virus (a/k/a varicella zoster virus [VZV], a/k/a human herpes virus 3 [HHV-3]) reactivates and infects the nerves—usually on one side of the body.  Apparently the painful rashes last for about 14 days. 

Dr. L said that after a person gets shingles once, it may become a recurring problem.  But if I recognize the symptoms sooner next time, and if I return to her immediately, she can prescribe drugs that will significantly shorten the duration of a shingles outbreak.  She prescribed Valacyclovir, 500 mg, 3x/day for 10 days.

I formerly took Valacyclovir for about 2 or 3 years to control re-activation of HHV-6 and other herpes family viruses due to a weak immune system, which can sometimes allow these old, dormant viruses to "re-activate" in ME patients—or so it is believed by some ME specialists.  This shingles outbreak is making me think I should possibly resume taking Valacyclovir on a long-term basis.

As a final comment, it was really nice to walk into a doctor's office and receive an immediate, concrete diagnosis, and a specific treatment plan.  I'd almost forgotten what that's like.  

My Latest Doctor's Appointment - Trying New Treatments

I had another appointment with my integrative medicine doctor yesterday, Dr. M.  Since my last post in March, the shortness of breath (SOB) and post nasal drip (PND), which I thought had finally gone away, came back.  But in the meantime, some very interesting clues arose suggesting a possible cause of this frustrating set of symptoms.

In early March, I became sick with a very bad cold, the main symptom of which was a hacking cough.  I coughed so hard I strained the ligaments in my ribs, making further coughing painful. During the 10 day span that I had the cough, I didn't have any SOB or PND.  (That's when I wrote my last blog post.)  A couple of days after the cough resolved, the SOB and PND returned.  Then, because of my weak immune system, the cough returned for another week, and the SOB/PND went away.  Then this cycle repeated a third time!  It was almost the perfect cause/effect experiment.

That brings us to present day.  I stopped coughing again about 3 days ago, and the SOB/PND returned again yesterday (the day of my appointment with Dr. M.)

But there's more...

I noticed that, very often, when I do something that should be good for my immune system, the SOB/PND becomes triggered.  For instance, nearly every time I take a zinc lozenge (but not always), the SOB/PND becomes worse immediately.  The connection with zinc is unmistakable.
Also, about once every two weeks, I am suddenly and for no discernible reason, able to catch an extra good night of sleep.  I will sleep maybe 9 or 10 hours and wake up knowing, feeling, that it was an extra deep sleep.  It's a hard feeling to describe, but it's unmistakable when it happens.  The strange thing is, these nights of "power sleep" are always followed by a bad day of SOB/PND.  This seems very counter-intuitive because sleep is supposed to be good for the immune system.

All of this leads me to believe that the SOB/PND is some sort of over activation of the immune system — an allergic or autoimmune-type response.  It's as if my immune system almost has to be stressed a bit in order to avoid SOB/PND, or in the case of my recent cold, to be "distracted" by something else.

When I explained this theory to Dr. M, she neither supported it nor rejected it.  She was simply pensive, and acknowledged the possibility that there could be something accurate in my theory (or perhaps she didn't want to hurt my feelings.)

As I've written before, Dr. M believes, foremost, that I have chronic Lyme disease and chronic babesia.  I've discussed my skepticism of this diagnosis with her and she understands.  At the same time, I can't completely rule out her diagnosis.

One of the hallmarks of babesia infection is cyclical SOB, like I have.  Dr. M has previously raised the possibility of me taking an anti-babesia medication called Mepron, but I have always demurred.  This time, after researching Mepron and understanding more about its side affects (mild) and risks (minor), I agreed to try it for 1-2 months to see if it will help decrease the SOB/PND.  So that is the current plan.  I will fill the prescription this weekend.
                                                                        _____________

We are also in the process of decreasing my daily T3 thyroid dose.  My previous doctor had increased the dose so high (75mcg) that my body nearly ceased all natural production of Thyroid Stimulating Hormone (TSH) and T4 (thyroid hormone precursor).  Dr. M wants to decrease T3 to the point where TSH and T4 begin production again.  We've already decreased T3 from 75 to 40 mcg. and I still feel fine.

Dr. M also wants me to increase my infrared sauna usage from 1-2x to 3-4x/week for detoxification.  (ME/CFS patients are thought to have broken or defective detoxification pathways.)  Although I once used my sauna almost daily for an 8 month period, right now I simply don't feel like I have the patience to increase my usage back to 3-4x per week.  I will try nonetheless.  She also stressed the importance of continuing to take Phosphatidyl Choline, which I will.

A Moment of Truth with My Doctor

I had my latest appointment with one of my doctors today, Dr. M.  She is my "second-string" ME/CFS doctor, but I need her for all the treatments Dr. C doesn't meddle with.

We Disagree About Whether I Have Lyme Disease

In past posts, I wrote that Dr. M believes, with "100% certainty" that I have Lyme disease.  This is based on her clinical diagnosis, an equivocal Stony Brook Western Blot test, and an IGenex Western Blot test that was positive IgM, negative IgG.  To be honest, her "100%" pronouncement was a bit of a red flag for me, as I don't think a responsible doctor should opine 100% certainty about any diagnosis, let alone something as complicated and controversial as chronic Lyme.  But on the other hand, I very much need a doctor to fill Dr. M's role, and I feel she is probably my best option right now.  I am reluctant try to find another local doctor who specialized in complex neruo-immune illnesses.

After first receiving the IGenex results, I thought I probably did have Lyme. But after reading more about Lyme and consulting other patients and doctors, I came to the belief that I probably do not have Lyme.  In my mind now, there is about a 10-20% chance I have Lyme.  Thus, I have a fundamental disagreement with my treating doctor...which can be a problem.  And so I went into this appointment intent on having a straight-talk conversation with Dr. M to determine if we should continue working together.

I explained my skepticism of the Lyme diagnosis as diplomatically as I could, trying not to make it sound as if I don't trust her experience or judgment.  Then I noted that the two main treatments she wanted me to try for Lyme would theoretically help regardless of which neuro-immune disease I have.  She has me taking Byron White's AL Complex, which is labelled first and foremost as "immune support," not necessarily a Lyme treatment.  The other treatment is Lauricidin / Monolaurin, which is supposed to be a powerful anti-bacterial, anti-viral, and anti-fungal.  So, in theory, these two treatments would help regardless of whether I have Lyme, ME/CFS, or both.  Plus, since I think there's still a small chance I might have Lyme, I want to hedge by incorporating at least one Lyme treatment into my plan, especially if that treatment helps with other conditions as well.

So I asked Dr. M, does it matter if we don't agree on exactly which disease within the neruo-immune family of diseases I have?  I said that in my estimation, it seems that about 80% of treatments overlap between Lyme and ME/CFS.  Could we simply focus on treatments that work for both?  She agreed that we could (maybe she simply wants to keep my business) and so it was settled.  

Phosphatidylcholine

I then told Dr. M about my experiment with Phosphatidylcholine (PC), a treatment she had recommended. To summarize my experience with PC: it started a major detoxification event from which I still haven't quite recovered.  I was effected badly by Herxheimer or detox symptoms: achy kidneys, crippling brain fog, muscle twitches, unquenchable thirst, urine that was a strange shade of yellow (almost brownish-yellow), and increased fatigue/inflammation.  

Dr. M echoed what I had already been thinking: that this reaction was actually a good sign. If we interpreted these symptoms correctly as the result of detoxification, then my body needs this detoxification.  I simply need to titrate more slowly.  (Dr. M pointed out that her instruction sheet from my last appointment clearly advised me to titrate slowly, which I completely overlooked.) So I'm going to try PC again, this time using the capsule form (as opposed to liquid form) so that I can more easily control the dose.  18 capsules apparently equals one tablespoon of liquid PC, so now I can start with 1/18th of the prior dose.  

Dr. M explained again that PC repairs and cleans cell walls throughout the body, which is consistent with what I had independently read. These built-up toxins (and oxidative stress?) then become merely waste in the body, existing intracellularly (between cells).  Releasing too much of this waste at once can make a person feel very badly.  I believe that's exactly what happened when I went directly to a high dose of PC; the symptoms fit.  

Hormones

I continue to believe that bringing the hormones back into something that resembles a "normal balance" is one important key (among many) to regaining health.  That's something that every ME/CFS doctor I've met with besides Dr. C has advised (Dr. C. has a laser focus on enteroviruses and related treatments, to the exclusion of most everything else).   

We also agreed that the dose of active Thyroid hormone (T3) my previous doctor had me taking was too high (75 mcg/day).  We want to go back down to 50 or less.  This has to be done very slowly and carefully because the body needs time to adjust and start increasing its own production of the thyroid hormone precursor, T4.  As a first step, we're only reducing it by 10 mcg.

We're also going to put me back on testosterone cream instead of the self injections.  The injections were causing me groin pain and I had to quit.  Prior to quitting, testosterone was helping substantially.  Thus, we want to add it back in, but less aggressively, and using a dosing method (cream) that doesn't lead to such extreme spikes of testosterone levels in the blood. 

So now we have a new plan... 

Dr. C on the hunt again

Yesterday I had my first appointment with Dr. C in about a year.  Dr. C is an ME/CFS specialist who is fairly well known in some circles.  The main reason I visited Dr. C this time was to solicit his opinion on my recent, questionable Lyme disease diagnosis.  He did not disappoint.

Research Update

CDC Tests Samples - No Luck

First, as usual, Dr. C brought me up to date on the most recent developments in his corner of the ME/CFS research world.  Dr. C adamantly and passionately believes that ME/CFS is caused by infection by enteroviruses.  For years, Dr. C has been trying to convince the U.S. Centers for Disease Control (CDC) to search for enteroviruses in his library of stomach biopsy samples from 2007.   They recently agreed and Dr. C sent some of his samples to the CDC.  Unfortunately, the CDC was unable to detect the presence of enteroviruses in the samples.  If I understood him correctly, Dr. C seemed to think that the CDC's failure to find evidence of enteroviruses in these samples was due to their age.  He asked them to search again using a different, more sensitive technique and they declined.

RNA Sequencing of Samples

In recent years, Dr. C has also been working with a biologist from Cornell University.  He sent the Cornell researcher a portion of his stomach biopsies, some from moderate patients and others from more severely ill patients.  Rather than look for enteroviruses, the Cornell researcher took the novel approach of sequencing the RNA in the samples.  She started with the samples from moderately ill patients and apparently the patterns she found were unusual.  (The question of what exactly was unusual about the samples was apparently too complicated to explain to me, a lay person, in the context of a doctor's appointment.  I of course understand.) Dr. C is anxiously awaiting the results of the sequencing for the samples from severely ill patients.  He seemed to think this could be a breakthrough.

Vagus Nerve Research  

Dr. C also mentioned some fascinating research from a Danish group of scientists involving the Vagus nerve.  In decades past, doctors sometimes resorted to severing the Vagus nerve of patients who presented with persistent and otherwise untreatable stomach ulcers.  (Thankfully, we no longer treat ulcers this way.)  But as a result, there is a significant population with severed Vagus nerves, which offers an opportunity to study the role of the Vagus nerve in overall health.

Some patients with Parkinson's acquire the disease in sudden onset fashion, after suffering severe flu-like symptoms.  (Sound familiar?)  There is a much lower incidence of Parkinson's disease in people whose Vagus nerves have been cut.  The Danish team believes this is because Parkinson's is sometimes caused by either Enterovirus 71 or Coxsackie B - 4, which enters the body through the stomach and travels from the stomach to the brain via the Vagus nerve, bypassing the blood-brain barrier. The Danish team will publish their evidence soon.

For years, Dr. C has looked for evidence that enteroviruses migrate from the stomach to the brain via the blood.  He never quite found the evidence he was looking for.  He believes the Vagus nerve possibly makes more sense as the vehicle by which the virus travels from the stomach to the brain.

Drugs for ME/CFS

After discussing a new potential drug that could help ME/CFS patients, the details of which Dr. C said were confidential and "not to be shared,"  Dr. C said that it is just a matter of time before we have a drug designed specifically for ME/CFS.  "There will be a drug" he said.  He offered no specifics on his prediction of timing for this drug, which I conclude could mean it's anywhere from 5 to 55 years away.  The good doctor estimates that there are about 4 Million ME/CFS patients in the United States alone.  He said the numbers are often underreported because there are many patients in the "mild" or "functional" category who often aren't counted in the ME/CFS statistic, but who would be candidates for any drug.  His point was that 4 Million patients gives the drug companies plenty of financial incentive to develop an ME/CFS drug.  But I wondered, do the drug companies know there are 4 Million wallets out there begging to be plundered?  

Shortness of Breath

I mentioned to Dr. C that I'd taken a bit of a downturn since the second quarter of 2015, in no small part because shortness of breath has decided to pay me an indefinite visit. He asked if I'd seen any specialists and I mentioned my consultation with a pulmonologist, including the CT scan and echocardiogram.  Dr. C said that none of those imaging techniques will reveal the cause of shortness of breath in ME/CFS patients because they only examine large airways.  The problem in the lungs of ME/CFS patients is inflammation in the microscopic airways.  The only way to detect this type of inflammation is through biopsy.

Dr. C went on to describe one of his ME/CFS patients who was so severely stricken by lung inflammation that she was often hospitalized for three weeks out of every month, and required near constant oxygen supplementation through a tracheostomy (a surgically created hole in the neck).  One of her treating physicians had placed her on high dose prednisone, which lead to a worsening of her condition and nearly killed her.

Dr. C was part of the team that was called into the hospital to decide how to handle this patient, who was a mystery to all but Dr. C.  Because the patient's blood tests were mostly normal, some of the doctors suggested that she was simply holding her breath!  In other words, she was a faker.  Dr. C expressed some anger as he described this, even 'dropping an F bomb,' which I found both endearing and amusing.  I like this guy.

Lyme Disease?

I told Dr. C that I had recently received a positive Western Blot test for Lyme and that I was skeptical of the results.  He asked if the results were from [_______] lab.  I said yes.  He smirked and shook his head.  I said, "So you think it's bullshit?"  (Now that Dr. C had cursed with me, I felt I could express myself freely.)  He said "Yes, it's bullshit."

Dr. C said that the Western Blot test is notoriously inaccurate.  He said that he, himself, sometimes performs the Western Blot test in his lab, and that the results vary even when performed twice on the same sample.  He said there are two labs in the country where "everyone's" samples comes back positive for Lyme.  [_______] lab is one of them.  

He also explained that its doesn't make sense that my results would be positive for IgM and negative for IgG (as I too had questioned.)  Some LLMD's will claim it's because a Lyme patient's body has a deficient immune system, caused by the Lyme itself, but Dr. C said a compromised immune system still wouldn't result in +IgM/-IgG.  

Having had the vagaries of Western Blot testing explained to me by someone who actually performs the test was convincing.  When I first received the test results, I wrote that I felt there was about a 51% likelihood I actually had Lyme.  Now I would say my level of certainty (or uncertainty) has fallen to about 10%.  It is possible, however, that just as LLMD's are often accused of "seeing Lyme in everything," perhaps Dr. C sees enteroviruses in everything, to the prejudice of everything else.  

I have to think about my treatment plan a little more, but for now I'm thinking I will simply continue with Byron White Formula's A-L Complex, and do nothing further about the possibility of Lyme.  In all other respects, I will continue as if I have ME/CFS only and continue with all my other ME/CFS supplements (many of which are used by Lyme patients too).  A-L Complex is, after all, sold as a general immune booster, so it should be helpful regardless of which disease I have.  With that plan, either way, Lyme or ME/CFS, I have at least some of my bases covered.  

Inosine

Finally, we discussed that I am going to try over-the-counter inosine again as an immune modulator.  I tried it once before but stopped because I thought it might be responsible for a bout of costochondritis (a type of chest pain) which arose soon after I started inosine.  Dr. C thought it was unlikely the inosine cause the chest pain, but possible. 

Allergy Testing Results

Lately I've been on a downswing in my health.  As a result I've gone through a period of renewed answer-seeking.  As one part of this quest for more answers, I've visited a few doctor specialists including a pulmonologist and allergist/immunologist.

Some say it's a waste of time to consult doctors who are not specialists in ME/CFS because they are generally "clueless."  I agree to some extent, although I think it's possible that, under certain circumstances, specialists can help a patient solve a small portion of the ME/CFS puzzle.  I also think it can be dangerous to always write off new symptoms as "just another manifestation of ME/CFS."  That's not an assumption you want to be wrong about.  It's better to be safe.

I had a follow up appointment with the allergist on Monday, still trying to find answers to my shortness of breath and post nasal drip. They conducted an allergy skin test in which they tested me for 50 of the most common allergens--mostly environmental allergens, but the test included a few of the most common food allergies.

Allergy Skin Tests

For those that haven't had this test, the nurse applies a grid to the patient's skin.  The grid contains a number of needles that each contain a small amount of a potential allergen.  Each needle introduces the allergen into the skin by puncturing or scratching the surface.  The test is usually performed on the forearm or back.  For me, they performed the test on the back because the forearm doesn't provide enough space for 50 punctures.

The test doesn't hurt; it simply itches slightly.  After 15 minutes the nurse comes back and looks to see where, if any, there are red marks (inflammation) on the skin.  The nurse keeps track of where each of the allergens was administered and that tells him/her what you're allergic to.

My Results

The results are given with a score of 0 to 15.  Any scores in the 7 - 11 range are considered highly indicative of an allergy.  For me, nothing scored that high.  A handful of results scored in the 2-5 range, indicating a "mild" allergy.

Mold.  I've recently had two different blood tests that, according to my doctor, revealed I am not genetically predisposed to react to mold.  This is consistent with my own experience--mold avoidance never did anything for me.  The allergy test did, however, show reactivity to two outdoor molds. According to the allergist, the results do not mean I need to check my home for these molds because they only grow outdoors.

Food.  They tested for wheat, egg, milk, and peanut allergies and I was negative for all four.  However, the next day after the test, I read in "Why Can't I Get Better?" by Dr. Richard Horowitz that scratch tests only test for IgM reactivity -- immediate, severe reactions.  According to Horowitz, one can have delayed reactions (IgG antibodies) which don't reveal until 24 - 48 hours later.  I may need to try an elimination diet to determine if I have IgG food allergies.  This is something I might explore in the near future.

Dust. I was negative for dust allergies (dust mites.)  This surprised me somewhat.  I thought that if anything could explain why I often seem to have worse SOB and PND in my car, it would be dust.

Trees and Weeds.  I only had mild allergies to 2 of the 15 trees and weeds tested.  One was a tree that only grows on the East Coast.  The other was olive trees (the leaves, not the pollen.)  I asked my doctor if this means I should avoid taking Olive Leaf Extract (OLE) as a supplement (something I was taking as of Monday, and which was an ingredient in another supplement I was taking.)  She said, "yes" but she was clearly guessing.  Subsequent Googling of that question lead to conflicting results: some said yes, some said no.  I'll probably avoid OLE to be safe.

Cats and Dogs.  I have mild allergies to both cats and dogs.  I knew about the cat allergy, but not about dogs.  Several months ago, my kids asked if we could get a dog.  Having been bitten by a dog as a child and never really being much of a fan of dogs since, I told my kids we couldn't get a dog because I was "allergic."  Apparently that wasn't a lie!

My Conclusions

The only useful information to come out of this allergy testing was ruling out IgM allergic reactions as a major contributor to my inflammation--at least for the 50 common allergens we tested.  There is some value in that.  I also learned that maybe I should avoid olive leaf extract as a supplement.  Unfortunately, I still don't have an answer as to why my SOD and PND often gets worse in my car.

Allergist says my nasal passages are "incredibly inflamed."

I've been writing about my efforts to understand my shortness of breath (SOB) and post nasal drip (PND), which always wax and wane together.  I had recently come to the conclusion that both symptoms are caused by inflammatory cytokines.  This would essentially mean that there is nothing I can do about the SOB/PND except for the usual, marginally effective measures: paleo diet, immune modulating supplements and (sometimes) drugs, lifestyle management.  These of course never make the problem go away, they simply make the problem more manageable.

My pulmonologist recommended that I see an allergist as a last resort.  I made an appointment with the allergist but nearly cancelled after wondering: what's the point?  In the end, I decided to keep the appointment.  My reasoning was: if the allergist can identify even one environmental trigger (such as, for instance, dust), then there's one more piece of information I can use to help reduce incidents of runaway inflammation.  It certainly won't solve all my problems, but it would be one more small piece of the puzzle.

The allergist I visited yesterday (Dr. L) was very impressive.  You know that feeling when you meet with one of those rare doctors who seems equally as invested in your health mystery as you? That's a good feeling.  She's been practicing for less than five years.  Sometimes I find that the younger doctors, while less experienced, are the best because they finished medical school more recently.  Medical knowledge is evolving so rapidly that doctors who have been practicing more than about 15 years are often clueless about chronic complex conditions.  Plus, younger doctors haven't yet been worn down by years and years of listening to people complain (can you imagine?). They still have some empathy left to give.  I don't mean this to sound age-ist.  There are some wonderful older doctors too.

Dr. L spent about a half an hour with me.  She said my nasal passages were "incredibly inflamed." Her preliminary theory is that the inflammation (the cause of which is still to be determined) is producing mucous, which in turn drips down my throat and causes the SOB.  I'm not so sure about the mucous being the cause of the SOB (highly questionable), but at least she's the first doctor who has attempted to tie the two symptoms together.  Because, to me, they are clearly related.

I'm supposed to come back for a "scratch test" next week.  I hope this test will explain why I seem to react to my car.