Cytokine Releases and Adrenal Spikes Part 2

 

Just 6 weeks out from Hawaii now and I am still alternating between Cytokine releases and adrenal spikes.  If there is any good news, the cycles are definitely getting shorter in duration and the peak symptoms seem to be less severe. At the beginning of September, each cycle lasted 5-7 days.  The first day or two after a Cytokine release, I was not even able to function but did improve steadily until the cycle was over.  Then, when the adrenal spike hit, I was just as horrible as the first day of the Cytokine release but also improved steadily until the cycle repeated itself.

Now, the cycles only last about 2 days.  While my workouts have been awful, I am still able to be productive at work.  I had a Cytokine release over the weekend but come Wednesday, it was over, and the adrenal spike hit by afternoon.  Today is Friday and it appears that the adrenal spike has already diminished, and I am ready for another Cytokine release.  I only did 1 Mile this morning at Montreat.  My time was 9:53 and it took a 4^th quarter rally to finish under 10 but the pace was pretty steady and if it was race day, I’m pretty sure that I would have made it.  Perhaps, from now on, I will see only small Cytokine releases that are not significant enough to trigger adrenal spikes. 

I had a big test when I get home.  If I reacted badly to Probiotics without Taurine, I know that I’m already back to the Cytokine release.  That means the adrenal spike lasted only 2 days and was decidedly less severe this time around.  In the end, I was noticeably weaker on Probiotics (2:56 vs 3:08) but I didn't fall off a cliff.  If this is the first day of the Cytokine release, it's not so bad.  Perhaps the inevitable adrenal spike won't be so bad.

Now, back to the mainstream medicine saga.  My PCP told me to see a Rheumatologist, who was supposed to contact me but never did so.  I contacted the PCP’s office and found that the doctor supposedly already sent a referral and gave me the phone number of the Rheumatologist.  I called them and said that I had gotten a referral and inquired about an appointment time.  I am “NOT EVEN ON THEIR SYSTEM!”  This is after almost a month!  Somebody screwed up.  I was told that sometimes it takes weeks for a referral to go through then longer to actually get an appointment.  Then, who knows if they will order the testing that I need.  The best-case scenario is that the Cytokine treatment works and I don’t have to even bother.  Still, I’ve gone this far with it, I probably should see the Rheumatologist at least once.  If I don’t like them, I don’t have to see them again.  Unfortunately, it will probably cost quite a bit of money. 

This means that even if I get a diagnosis and treatment plan, I won’t be able to start on it until after Hawaii.  I have NO chance at a respectable showing, so I just want to remain as comfortable as possible while remaining ahead of the time limit.  I really don’t care if my time is 2:30 or 3:15. The only goal is to FINISH!  After Hawaii, I will take 6 weeks off then try to re-group after Christmas.  By that time, I will have had my appointment and I’ll know one way or the other whether or not I can race again.  

UPDATE:

Completed 8 miles on Saturday morning.  Time was 89:30 (11:11 pace).  I went with a 4:1 jog/walk ratio until Mile 6 then jogged the last 1.9 miles.  I was pretty much spent when I finished but even a slow walk (20 minute pace) for the next 5 miles would have brought me home in just over 3:10.  The time limit is 3:30.  On a day like today, I will make it.      

Oahu Hawaii Trip Plan

 For better or worse, this trip is a GO!  I'm afraid that I have a degenerative condition and I won't get another chance at this in the future.  I've got everything booked except for 1 hotel on my layover.  More on that later.

11/10- Morning flight out of Birmingham with a connection in Denver.  Only 2 flights and no trip to Atlanta.  That makes it much easier.  I will land around 4:30 PM so that means I probably will not have time to catch any waves.  Maybe I'll take a quick dip but that's it.  The sun will go down around 6.  I requested a Toyota Camry rental car so hopefully that means no key fob.  I'll have a traditional door key to start the ignition so I don't have to worry about it getting wet.  I will still try to find a waterproof case that fits in my pocket and covers all shapes of key fobs.  Word on the street is that Hawaii has a pretty bad homeless problem so I ain't leaving my stuff on the beach.    

11/11-11/14- I am staying 4 nights on the beach at Waikiki.  Can't go wrong there.  It sure does look beautiful.  Yes, I will sample other places as well.  Here is a list of places that I'd like to see:

Diamond Head, Pearl Harbor, Sherwood Beach, Nanakuli, Malil Pillbox, Sunset Beach on the North Shore.  The first two days, I will try to take it easy in the surf.  Last thing I need is a knee or ankle injury from an awkward landing on a wipeout.  A hike up Diamond Head before race day?  I see no problem with that.  I don't think it will tire me out or make much difference either way.  I do NOT want to do it after the race.   

11/13- This is the day that I am DREADING!  It's race day.  No need to rehash how I feel about it.  The only goal is to FINISH and I hope to stay as comfortable as possible while remaining well ahead of the time limit.  It's a low-key and no frills event and that's just what I am looking for as I'm going out with a whimper instead of a bang.  The Start/Finish Line is at Kapiolani Park, which appears to be within walking distance of my hotel.  If not, it will only be a 2-3 minute drive.  

When I'm done, I expect to have mixed emotions.  Finishing a half in all 50 states is incredible accomplishment but knowing that it's likely over will be bittersweet.  Sure, I knew it would happen eventually but expected to have another 15-20 years.  

11/14- I will make a loop around the island while beach hopping and spend the night less than a mile from the airport.

11/15- Early morning flight with a connection in San Francisco.  I'll get there by 2:00 PM and I am taking an overnight layover.  Last time, I tried to go without one and was DEAD by the time I got to Atlanta.  Even for a short distance, it was not safe for me to be on the road.  Birmingham will have an hour less jet lag and it's only 20 minutes from the airport to home but I still don't feel safe.

Though I am not a fan of San Francisco, it does have some very beautiful areas.  I can take BART to my hotel in the Financial District then walk to see the Golden Gate bridge before sunset.  I'd also like to see Rincon and Dolores Park.  I do expect to be tired but not dead from the jet lag.

11/16- Leave SF at 2:00 so that gives me exactly 24 hours.  I connect in Dallas and get back late but  that's okay.  I should be at least somewhat functional the next day.  

I really should be more excited about this one and probably would be if not for the race.

 

Cytokines and Adrenal Spikes

 There is always one pill that I cannot function without and it alternates between the Cytokine suppressant and the adrenal suppressant.  THIS SUCKS!

Here is what I think is happening:  The Cytokines are being eliminated in batches.  If this is indeed what triggers the sensitivity, it has been a problem for 20 years and thus, I should not expect to eliminate this issue within just a couple weeks.  After a batch is eliminated, the adrenals spike temporarily.  After the adrenals begin to calm down within several days, another batch is released and the cycle repeats itself.

Symptoms:

During the adrenal spike, the sensitivity is not a problem.  I can take Probiotics without Taurine and vice versa.  Additional Cytokine support does nothing.  Only after taking extra Thym-Adren do I see improvements but yes, they are significant.  Today was typical of such a pattern.  I opened with a PATHETIC 2:01 half lap at Montreat (12:06 pace).  I was only slightly better on 3 Cytokines.  Improved to a 1:54 (11:24 pace) and probably would have done just as "well" on 1 pill instead of 3.  However, after taking 3 Thym-Adren, I did improve significantly.  I improved to a 1:27 (8:42 pace)  MINUS 2:42.  If I had taken additional Thym-Adren, I am most probably better.  I did drag my ass out about an hour later for a non-stop Mile and clocked a robust 10:18.  That's fully 5 minutes slower than my adult PR.

During a Cytokine release, I am just as awful on the opener but this time, additional Thym-Adren does nothing.  1 such pill works just about as well as 3.  However, the sensitivity returns with a vengeance and I will feel better ONLY after taking additional Cytokine pills.  I'll need at least 3 to function and I'll most probably be better on 5.  The cycles do seem to be getting a little shorter in duration.  The plan is to take 3 of each until further notice and roll with it no matter what the results.

Hawaii is now less than 7 weeks away.  Part of me does not even want to go but I can't quit now with one state to go.  I don't care if my last state is Hawaii or North Dakota.  I'm going to finish this.  I figure that I need to maintain a jog:walk ratio of slightly better than 1:1 to finish.  I like my chances.  I'm going to say that I have about a 70 percent chance to do it.  I will take extra pills of both Thym-Adren to Cytokine to guard against the spike and the release.  Put it off until I am better?  NO!  That may never happen.  I may be worse come next Spring.  

I dealt with a similar pattern with the Advanced Toxin Removal.  There were several signs that indicated that the toxins were the trigger but that proved to be another dead end.  If the Cytokines are another false hope?  I will be utterly broken.  I will see the Rheumatologist but want to see how this plays out.

Training 9/10-9/18

 9/10- Got back from California two days ago and didn't feel as bad as I expected.  It seems like the Cytokine dependence is no longer a significant issue.  However, it never fails!  As soon as I fix one problem, another one springs up.  This time, the culprit is an adrenal spike, which is not surprising after a major problem is solved.  Hoped to walk/jog 8 miles today or at least repeat the 6.5 from 2 weeks ago.  FAIL.  Quit after just 1 mile in 12:18.  Intervals later confirmed that more Thym-Adren is needed.

There is ALWAYS at least one pill that I cannot function without and it changes every other week.  One day's medicine can be the next day's poison and I STILL have not confirmed the trigger after so many years.  What kind of mood would you be in if this was you?

Distance=1.5

9/11- Marginal improvement over yesterday.  Got through 2 miles in 23:54 (11:57 pace) with splits of 12:12-11:42.  No comment.

Distance=2.0

9/12- Repeated the 2 mile distance and my time is down to 21:56 (10:58 pace).  Splits were 11:06-10:50 and pace was pretty steady from 0.5 miles to the end.  I expect to improve steadily this week but who know about next week?  If my history is any indication, something else will pop up.

Distance=2.0

9/13- Same workout.  Time is down to 20:30 (10:15 pace) but splits are evening out (10:19-10:11).  Rate of improvement is already slowing.  Tried to run again in the evening 12 hours after taking the pills and could not run at ALL.

Distance=2,0

9/14- Turned 42 years old.  Continued to improve rather steadily.  Time for 2 miles is down to 19:15 (9:37 pace).  MINUS 38.  Again, the rate of improvement is slower than usual but a gain is a gain so I'll take it.  What is the point of confidence?  I want to see a time under 18 for 2 miles then I'll shoot for under 24 for 3 miles.  If I can make the latter, I think I'm on the way.  Long way to go.  Still bad in the afternoon and evening unless I take another dose.

PM- Again, I tried to run after not taking a pill for 12 hours and I was AWFUL.  Half mile at Montreat in 5:21 (10:42 pace).  OUCH!  If I had taken more pills, I guarantee that I'm a minute faster.  Not good that I am this dependent. 

Distance=2.5

9/15- AM- Half lap in 1:45 (10:30 pace) then took the usual 3 Thym-Adren and improved to 1:12 (7:12 pace).  MINUS 3:18!  Slow jogged another half lap.  This is not okay.  That gap had better close soon.

PM- 1.5 miles in 13:45 (9:10 pace).  MUCH better than yesterday.  The gap should diminish soon.  I figure that I would be no worse than 18:45 for a full 2 miles in spite of not taking pills for 12 hours.

Distance=2.0

9/16- 2 major points of confidence.  The Thym-Adren gap is beginning to diminish.  I managed an 89 second opener this morning (8:54 pace).  Did not run the closer but I'm sure that it would not have improved by the same amount.  I'd guess that it would be 6:30-6:45 pace versus 7:12 yesterday.

2 miles in 17:44 (8:52 pace).  Splits were 8:59-8:45.  Slow start but found a good rhythm after the first half mile.  Next goal is 3 miles in less than 24 minutes, which is what I termed as the Mendoza line.

Distance=2.5

9/17- First downer of the cycle.  5 mile walk/jog in 59:40 (11:56 pace).  Hoped to do 8 miles but could not make it.  I was doing okay through the first half but died after that.  Seems that I forgot to take the Cytokine pill this morning.  Just one missed dose and this is the result!  Not pleased.  

Distance=5.0

9/18- This time I made sure that I took 2 Cytokine pills and it was a disaster.  Only managed 1 mile and my time was over 12 minutes.  Thym-Adren did NOTHING!  I once again have an insatiable need for Cytokines.  Never fails!  I solve one problem then another one flares up.

Distance=1.0

-20.5 miles

So-Cal Road Trip Report

 9/3- Caught a 7AM flight out of Birmingham with a connection in Dallas.  There was a delay on the second flight, but no harm done.  I checked into my hotel and was still able to make it to Dodger Stadium on time even with a stop at Pershing Square and Grand Park.  I walked to Union Station then caught a bus to the gate.  The Dodgers won big, and I walked back this time on Grand Avenue then had a drink at a rooftop bar at my hotel.  Really cool.

9/4- Drive on Sunset Blvd through Hollywood, Beverly Hills and Rodeo Drive to Santa Monica.  I wasn't overly impressed with Hollywood, but Beverly Hills was very nice.  Initially, I planned on going south to Huntington Beach but because it was a holiday weekend during a heat wave, I figured that parking would be a nightmare unless I got there super early.  Instead, I decided to stay in Santa Monica before going south in the afternoon.  BAD CALL! 

 I had to leave my clothes and key out because if the key fob got wet, it would be ruined.  I figured that it would be safe enough to leave it at a lifeguard tower.  WRONG!  It was stolen.  Could have been worse.  At least the thief did not find my car.  How would I get home if the car was stolen with my wallet and phone inside?  Still a manageable situation, right?  The rental car company would send someone to give me a replacement key.  The asshole stood me up.  I expected him to meet me at the agreed upon address, which was a restaurant.  He parked a block away and stayed in his car for 5 minutes then left.  Apparently, I was supposed to meet him at the address on the app.  INEXCUSEABLE that he left!  I could understand it if I wasn't there 20-30 minutes later but not 5 minutes.   The driver himself never texted me either.  Only the rental agency stayed in contact.  I had to call a locksmith to get a new key and when it was all said and done, I did not get out of there until 5:30 PM (5 hours later).  Don't even ask how much money it cost me.

I hoped to get to Torrey Pines for a cliffside sunset, but I was too late.  Instead, I went to Bolsa Chica State Park.  At least, I knew that beach was safe.  I would do my best to enjoy the rest of the trip, but this experience left me badly shaken.  Supposedly, the safest thing to do was remove the door key and leave the key fob in the locked car.  Still, if someone breaks in, they can start the car.  Not all key fobs have a removeable door key either.  If I had a car with a door key to start the ignition, none of this would have happened!  My suit has a pocket with a zipper, so I won't lose the keys on a wipeout.  Some sort of waterproof case is a necessity in the future, but it must fit different sized key fobs.   

9/5- Morning at Pacific Beach, near San Diego.  I found the conditions to be very nice and the sea water was a tad warmer than Santa Monica and noticeably clearer as well.  Not quite as clear as Miami or Destin but not far off.  There was nothing with wipeout potential, but I got plenty of good rides.  By early afternoon, I made my way to the border at San Ysidro and crossed into Tijuana.  I've done this enough that it feels almost routine now.  I had a nice time there but limited myself to 10 blocks of Revolucion and Constitution Ave.  for safety reasons.  Tijuana is one of the most violent cities in the world, but I never felt unsafe because tourist areas are well-patrolled.  

9/6- Long line at the border back to the USA so after a photo op at Centennial Park, I would choose the San Diego Zoo over the beach.  The zoo is really not my kind of thing, but I still enjoyed it.  I checked into my downtown hotel and relaxed for an hour or so.  Next, it was a walking tour of the Gaslamp Quarter before the Padres game, which they won in walk-off fashion.   

9/7- Back north toward Los Angeles.  First stop was Laguna Beach, and it was mostly a walking tour.  I was gun shy about going in the ocean for more than just a quick dip though I'm sure it would have been safe especially in the coves.  It was REALLY beautiful there and I wish I had more time.  I'd say it rivals Hawaii in terms of natural beauty.  After lunch at In & Out Burgers, I had a safe surf session at Bolsa Chica about a half hour north then made it to Manhattan Beach for the sunset.

9/8- Manhattan Beach is only 15 minutes from LAX so I had time for another dip but chose not to do so.  I just didn't want to risk another SNAFU.  The 2 flights home went off without a hitch.  

Final thought:

I'm not going to let one bad experience affect my view of any location.  So-Cal is a beautiful area, and I found the people to be nice as well.  You won't get a smile from strangers but if you engage them in conversation, they will be friendly in response.  I do intend to go back.  I won't go to Santa Monica again, but I really didn't do justice to San Diego or Laguna Beach.  I've seen pretty much all I want to see in downtown LA and Tijuana, however.   

Lab Test Results

 

On August 29, I had to go to two different labs for tests.  The first was at the doctor’s office for a re-test of auto-immune issues.  The second was out of pocket at Quest Labs.  Supposedly, the doctor’s lab “could not” do the Cytokine panel.  There were only two related tests available on Request a Test, so I chose Interleukin, which I thought was most likely to reveal something.  Again, based on my symptoms, there MUST be something out there that would test SEVERELY outside the reference range!  Even if my prognosis is poor or uncertain, I would feel vindicated because the test would have explained the reactions to benign vitamins and minerals.  It would have proven that it was not psychological or related to aging.  

Three days later, I received a call from the doctor’s office.  There were no hard numbers available, but the test proved that I do NOT have Autoimmune Hemolytic Anemia.  I interpret that as good news.  Perhaps a positive test may explain sudden collapses midway through workouts, but I do not believe it explains the sensitivity and extreme reactions to supplements.  Something else must be causing that.

I had to wait another week to get the Cytokine/Interleukin test.  The reference range was 0-5 but it is best to be almost undetectable.  My result was 3.74.  A little on the high side but within the range and once again, it does not explain my symptoms.  I am NOT happy about that, and it was a surprise that it came back normal based on my response to the Cytokine supplement. 

At first, I had limited tolerance to the Cytokine pill.  Though it did shut off the sensitivity, the fatigue set in HARD shortly after taking it and extra pills made it worse.  On the day of the lab test, I felt HORRIBLE without this pill but significantly better after EACH dose.  One pill was no longer enough.  I needed at least three to function.  Thus, it was just like any other new treatment.  I would not be able to run an interval at 12-minute pace without it but on the full dose, I was below 8-minute pace.  As expected, the gap diminished with time and today, I am not as dependent on this pill. 

Plan:

I am going to stay on the Cytokine pills even though the test did not reveal a problem in this area.  I don’t care what the test result says.  I feel much better with it than without it.  I will go off the Taurine and hit the detox and Probiotics hard.  The same plan of attack caused SEVERE sensitivity before I started on the Cytokine treatment.  I needed an exact Cal/Mag ratio as well as a ratio of TRS and Fulvic Acid.  If the sensitivity does not flare up again, it’s a good bet that the Cytokine treatment did the trick. 

I only tested ONE Cytokine marker, not the full panel.  I still believe that if I had tested the whole panel, something would have shown up.  A normal TSH does not necessarily mean healthy thyroid function, nor does blood aldosterone guarantee healthy adrenals.  The same may hold true for Cytokines.  Perhaps blood tests are not accurate, and it must be measured in the urine or saliva.  The most important thing is that I am getting better, but I still want to see something WAY out of range.  Not only would it vindicate me, but it would also give me confirmation that my treatment is on the right path especially if a re-test showed movement in the right direction.    

The PCP told me to see a rheumatologist who would test the whole panel but did not give me a name of a practitioner.  Who knows how long that will take?   I’m not going back to the PCP.  If I continue to improve and avoid the flare ups, I see no reason to see the specialist.  Let’s hope that I am finally done.