May 2, 2010
Mine is not so much a question but more of commentary on IRIS gone wild. I dont know if this is the best place to tell this story but I figured you would know and could put it where it might reach the most people. It was Jan of '96 when I first encountered what is now called IRIS. CMV retinitis showed up in my left eye. I was lucky the problem was so far from the center of the retina that I had no loss of vision. All I noticed was flashes of light in my eye when there was nothing flashing. I was started on IV gancyclovir 2 days after the flashing started. I used that daily for 8 months and then along came Vistide, I was so glad to be able to go some place without that damned IV pole and drug pump. It made for one whopper of an IV every 2 weeks but it was so much easier. Then in Aug of 1997 NIH initiated a protocol for patients with immune systems that were responding well to their 3 drug combos. I was the 7th person screened and the 5th person recruited for this ground breaking study. I have the dubious distinction of having the smallest CMV scar the NIH has seen to date. IRIS was still something of a theory then. What follows isnt pretty. I had no further advancement of the CMV bug, and my cd4 count was almost 600 with a viral load that was at that time undetectable and with the exception of a couple stoppages in combo meds I have remained so. Late June of 1998 I developed a back ache in a location that had never hurt before but was in the general area that I could have had a kidney stone causing this pain. I can only wish that that is what was wrong, you can fix a kidney stone. My doctors at home had determined that vertebrae t-11 had an infection but could not tell what the infection was, I had two biopsies done, one was with a needle and the second was made thru an incision in my back. The doctors at NIH took an interest in what was happening but a positive culture was unavailable and I was being treated for TB of the bone, that being the most common of bone infections. I felt like death warmed over and I was on first name basis with everyone in radiology, I had so many scans I should have glowed in the dark! One did not need to be a radiologist to see that this infection was getting worse, it was plain even to my untrained eye. Jan of '99 comes along and my doctor at home said that I was going to need to try different medications because I just about had to have a MAC infection. Different medications made very little difference. NIH doctors are following all of this and were as in the dark as my doctor at home. I gathered up a huge amount of films from the radiology dept of my local hospital and took them along to Bethesda for a scheduled CMV study trip, This was in March. The ID doctors didnt see anything to biopsy and thought that I should continue the present treatment. However they asked a neurosurgeon to come and take a look at my films. As it turned out he hit pay dirt,he pointed out a spot on one set of films that everyone had missed. The man said that right here is fluid and I want a sample of it! I ended up staying a couple extra days in Bethesda and the NIH collected a sample of what was termed purulent fluid. I knew that evening that I did not have TB of the bone. It took the labs at NIH and other labs eight weeks to come up with an answer, I had a MAC infection. The medications got more heavy duty than ever before, but didnt do much good. I was back in Bethesda in late July and I mentioned to the doctor that was doing a physical on me that I was having some trouble breathing, she sent me to x-ray and she was all but panic stricken when she returned saying that this just could not be my film. she got a lesson in listening to a chest that day, the film showed my left lung had a great amount of fluid in it. The following day the doctors drained 1.1 liter of fluid out of my left lung. Im told that labs all over the country got some of this fluid and every last one came back with nothing. NIH was really watching me now. Good God but I felt like hell, I was still working full time in the road construction business operating heavy equipment. I was using the maximum of Advil and Tylenol for pain and low grade fever, they really didnt do much for pain. Ten days after NIH got 1.1 liter of fluid from my left lung, a doctor at home got 1.5 liter of fluid. Thats when the Amakacin got started, I had a port installed for the third time and drug an IV pole and drug pump home with me and I faithfully did IVs for the next 6 weeks. Here is a very good example of in vivo and in vitro lab reports showing something that is absolutely contradictory to what is happening in real time. Susceptibility tests in the lab indicated that Amakacin would be ineffective against the particular strain of MAC infection I had. But in truth after just 2 weeks of IV medication I felt better than I had in a year. No more low grade fever, didnt hurt as much. Surgery had been mentioned some months earlier but was moved to the back burner, it now was moved to front and center the abscess was getting larger and t-11 and t-12 looked mighty nasty. about half of the disk had been destroyed by infection and breathing was still a bit of a problem. It took 3 months to find doctors to do the job. Surgeons locally ran off screaming,do you really need three guesses why? NIH became very active and talked to Johns Hopkins George Washington University hospital and a number of other facilities that could do the work properly and werent afraid of the big bad HIV bug. GWU in DC was settled on and surgery to debride bone and remove the remaining bits of disk, remove the abscess and then they repaired an adhesion of the lung to the muscle wall. It was hoped that t-11 and t-12 would fuse. I spent a week in the hospital at GW and then ten days at the NIH hospital in Bethesda. My back still hurt but I honestly did feel better and I returned to work full time after 2 months of recuperation. I was still making trips to NIH monthly for the CMV study and it seemed like every trip I got put thru either the MRI or CT machines. Everyone in the CMV study was doing so well that follow up visits were moved to two months apart and then three months. Finally after two years and no evidence that there was any active infection, we got to stop the antibiotics. If this was a mistake we will never know for sure. I felt pretty good no fevers but the back pain was slowly getting worse and I finally had to start using Percocet for pain, 2 or some days 3 5mg tabs kept pain to a tolerable level. April of 204 come around and one day I noticed I had a tender spot on my left side exactly where a chest tube had been placed in '99. then it started to swell up some. I asked doc if this could be a hernia because the swelling would all fit back between the ribs. he felt of things and said Ill be damned if you dont have a hernia right there, odd spot for one, so lets get a CT done just to be sure. It was 3 weeks before I could get back in for this CT, I was totally swamped at work and I was feeling a bit rough. Doc called me and asked if this "hernia" had gotten bigger and I said yes it had. The radiologist thought it some sort of fatty growth that should have a biopsy done to further identify what was happening. I lucked out and took an appointment time where someone had canceled. I went off to the hospital from work, the dog was in the truck with me, I was filthy really but you do these things when ever you get the chance. I lay down on the CT table and they got me positioned to aspirate this with a needle well the doctor doing this got one hell of a suprise and I lost all faith in the local radiology people at home. He got 50cc of purulent fluid without even trying and how much more is any ones guess suctioning with the syringe. I had a knock down drag out with the nurse at admitting, I was going to be admitted then and there, after the dust settled I had a 2 hour reprieve to go to the house and get some toiletries and what not and to get the dog off to the vet for boarding. Well it was a no brainer as to what was going on and the antibiotics were restarted while I was in the hospital for 5 days. I had been put under and a drain tube had been put in to drain away purulent fluid. I went back to work when I got set free and wore a suction device on this tube for the next 3 weeks. They took out the tube when the drainage got to all but nil. I went home with just a band-aid over the exit wound. That wasnt so bad I thought, I couldnt have been more wrong. I was heading to work at 7am and had just pulled into the shop when I noticed that damn but my shirt sure feels wet, it was one of those extra warm spring mornings, I wasnt wet because I was sweating! purulent fluid all over hell. I was lucky and found the company nurse in at 7 and told her to stay put that I needed some help. she got me cleaned up and bandaged enough to make it down to the ER. it was decided that they should lance this wound so it could heal better also I should have a packing in this wound and I would need to have that changed twice a day. Well this hole in my side kept getting a little worse everyday, wasnt long before they were putting in a meter long strip of this packing material that was maybe 10mm wide. fter about two months a heart/thoracic surgeon was asked to take a look and he said lets try to open this some more and then we will see. It was decided that surgery was the only way that this mess was going to get cleaned up. He explained what he thought best and I agreed, he just neglected to tell me that I was gong to be missing a piece of rib about six inches long. I woke up in recovery with a nurse telling me she didnt appreciate talk like that, I am sure I had called her and anyone else close by every name in the book. Well now I ws back in my hospital bed and wasnt too uncomfortable considering I was wearing a bandage roughly the size of a baby diaper. They most horrific pain of my entire life came around supper time. here was the nurse to change my wet to dry packing material and put on a new dry outer dressing.I screamed when they started pulling because it felt as if my anus and gonads were getting pulled out through my side. Im not sure just how much morphine they gave me before they could continue. After 4 days all the nerves in that incision were so numb from wet to dry packing that I could get by taking a Percocet 30-45 min before it was changing time. After about 3 weeks I got to wear a wound vac, it was almost as much bother as going in to get twice daily dressing changes. I got staph infections in the wound twice while lugging that heavy damned thing around. I wore that for 6 weeks and all I can say is dont ever show me one of those things again. But these dressings and new packing went until late December, most times twice a day. I found out about the missing rib about 8 weeks post surgery. This surgical site is now one of the ugliest scars I have ever seen on anyone. It is a surgical procedure that I never really recovered from. The infection seemed to be under some sort of control but it would flair up and then we would adjust meds some more and things would get a bit better. NIH sort of stayed out of this one since the CMV study was shutting down and they didnt have any protocol that I could fit into. Funding was super tight during the "Dubya" administration. I went back to Bethesda in the fall of '06 to do a fatigue study. The NIH doctor that had been following me the most got brought up to speed on the spine and They even squeezed me into their MRI schedule. late April or early May of '08. a new round of inflammation and I gave my NIH doctor a call and told him what I had been told. We talked a couple of times over the next month or so and finally he came back to me with the proposal that again GW would do the surgery and I would remain at NIH for recovery. I saw parts of the radiology report that mentioned cracking in several vertebrae. I set up an appointment with the surgeons at GW and had all of the testing and lab work done at NIH. I saw the bone man on the 12th of August an I was set for surgery on Aug 25th and then they would complete the reconstruction of my spine on the Tuesday after Labor Day. I got a nasty surprise around supper time, I had no clue what was wrong but I could tell it was very serious. Earlier in the day they had removed a chest tube that was not going to be needed any longer. It turned out that I was bleeding internally, Talk about rough. They stuck the Foley back in and hung several extra bags of fluid, then got bounced around through a couple different CT machines and finally around 2am they finally knocked me out so the cutting could begin. I woke up with a nurse screaming into my ear that I had tried to pull out my new tubes 3 different times. I was in restraints that any bondage affectionado would love. there was some sort of tube in my mouth and I couldnt talk, the dumb bastards, I wasnt trying to tear things out it just itched so, I need to scratch the area in the worst way and here I was so hamstrung and effectively gagged I couldnt tell them what was wrong. Im not too sure where I was but I could hear them talking saying he can stand the rest of the spinal surgery. So several hours after one emergency surgery I was back in the table finish up what had been planned. Everyone was asking me how tall I was and kept telling them 6ft and a bit more. they needed that information to make the titanium rods that replaced 9 vertebrae that were being destroyed my infection. I went into the hospital standing 5ft 9in. I found out from one of the surgical staff that I had 4 vertebrae had totally collapsed and together they were about as tall as one normal vertebrae. Im not sure just how many labs got some of the tissue samples but they all came back with the same result that there was no pathogen found. They all had worked for about 8nweeks trying to make things grow MAC but it was never found in the bone. This doctors and anyone else that reads this is now called IRIS an IRIS gone wild. Its two months short of 12 years now that I have been fighting and now Im told that it is some form of IRIS!!!
A PS for medical professionals, if you want any specifics on my case, let me know and I will give you contact information and will release medical transcripts to you.
Response from Dr. Holodniy
Quite a story.
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