On Wednesday was Jason's polygam infusion (his iv medication for his immune system). We got admitted just after 8am and unfortunately had to wait quite some time before we could take bloods and do the drip. The reason for the delay was due to the fact that I requested that we repeat the H. Pylori and Rickettsia tests that were done a few years back. We eventually started at about 11am which was three hours after admission. Once the bloods and the drip were done the day went pretty smoothly for us. It's always a long day as the medication takes hours to infuse. Jason's standard bloods looked good. His neutrophils were low again which means that he is susceptible to catching bacterial infections. This is quite a common low result for Jason though - I don't know how you actually increase your neutrophil levels either. Something on my Google list. Dr. P was happy with things and happy with how Jason was looking. The day went smoothly and we managed to get home by 8:45pm.
H Pylori and Rickettsia tests
So I requested that Jason's paed repeat the H Pylori and Rickettsia tests. Dr. P is very good with my judgement and was very obliging and agreed to repeat these tests although both of them had been done a few years back. The H. Pylori test was positive in January 2013 and as far as we were concerned the Rickettsia was negative. I wanted to make sure that the H. Pylori bacteria was no longer in his system and as far as the Rickettsia, that is a long story..... I have been doing a lot of thinking as I always do with Jason, his illnesses and his symptoms. My best friend was recently diagnosed with Lyme disease and we have been chatting extensively about this topic and the possibility that maybe Jason has it. Jason has been bitten by ticks in the past when he was small and rickettsia which is a bacteria carried by ticks, fleas and lice can stay in your system for years if not treated appropriately and can make you very ill. Although the test was "negative" back then, this doesn't necessarily mean Jason doesn't have it. My best friend's tests were negative as well but she was adamant to get some answers and through research stumbled across a doctor here in Pietermaritzburg that has a different approach to the way of testing for Rickettsia. Her results through the lab were negative for the 4 Rickettsia antibodies but through this doctor was actually positive for two. So although going through two doctors here with the blood results saying negative, she actually has Lyme disease and this was proven with a different doctor and different method of checking. SO this got me thinking and I decided that we should re-test and see what if!
Urine protein creatinine test result
So on Saturday after seeing Jason's nephrologist we decided that with the amount of diarrhea and the malabsorption issues, maybe, just maybe Jason was not absorbing his medication. Prof B thought it was a good exercise to check as he has not had a case like Jason where the medication doesn't almost totally normalize the levels. His words to me was Jason is an "enigma". So we repeated the urine test on Wednesday after stopping the meds and it turns out that from the level being 0.52 it went up to 1.10. So according to Prof B the medication is helping but it is not totally abolishing urinary protein loss, which is a bit worrisome. He has advised me that he would like to discuss Jason's case with a few of his colleagues and see if a kidney biopsy is warranted. So we wait to hear that decision.
The craziest thing happened to me on Friday night. When looking through Jason's medical file while looking for all the blood results for protein/creatinine ration. I came across the H Pylori and Rickettsia Antibodies tests. I obviously knew the H Pylori was positive but what hit me like a ton of bricks was in fact the Rickettsia antibodies was a positive result not a negative result. I can't tell you what happened besides the fact that Jason's usual paed was away that weekend the tests were done and a very good stand in paed was there. I can't say that he overlooked this because I actually did as well. The way it was typed was quite confusing. It both the Rickettsia Conorii IGM and Rickettsia Africae IGM were negative but the Rickettsia Conorii IGG and Rickettsia Africae IGG were positive! The lab gave the reading but next to the reading didn't say "positive". When I looked under the results - the conclusion said "this result suggests a past exposure to R. Africae and/or R. Conorii." I didn't understand it myself but my friend explained that the IGM is a recent infection whereas the IGG is an old infection that is there. So Jason in January 2013 didn't have a recent infection but an old infection that he was positive for. Jason had been bitten by ticks and he was positive for the Rickettsia bacteria two years ago. I have run this past Jason's nephrologist who is an excellent specialist. He told me that a past exposure does not mean an active infection and Jason has had a lot of antibiotics after he fell ill so this would have inadvertently treated any occult infection. His present Rickettsial tests are negative and the means of testing has a lot of cross reaction to other common organisms so the test is not conclusive. He advised that we should not be too concerned about this.
I don't know to me a positive is a positive - have we treated Jason appropriately and the Rickettsia is not there any longer OR is the recent tests a false negative just like my best friend? Do we act on this and go and see the PMB doctor on a chance that possibly Jason has it or do we just leave it and accept that Jason doesn't have it?? Again it boils down to money - this doctor charges R950 a consultation and then we have to add on top of that the testing which will cost about R3,000.00. The testing that she does is a different method of testing and through my research our local blood labs don't do this form of testing whereas this PMB doctor sends her bloods to a specific lab that does the tests a specific way. Do we do it or don't we? I say yes but our medical savings account and bank balance says no. It's not that I don't trust our doctors, it's just based on my friend's experience. What if Jason does in fact have Lyme disease and not some rare condition?
I have been debating with myself since I found out on Friday night. Man a mother should not have to make these kinds of decisions for her child. What if Jason does have it and I chose not to do it? What if we go and see these doctors, spend huge amounts of money, almost depleting what savings we have left for medication and the tests are negative?? BUT if we don't do it we will never know!!
This is the same questions I have about the micro array genetic tests that a Joburg geneticist suggested we do. To do this micro array test would cost us approximately R7,000.00 as it is a test done in the UK. If we do it, it may give us more answers into Jason's complicated history but it could also come back negative. BUT again it would be an answer, another tick off the list.
At the end of the day. In our case as in a lot of you reading this, your child's health boils down to money. Your child's progress with therapy, schooling and medical issues boils down to money. If you had the finances you would do it in a heart beat but if you don't have the money, you can't do everything and you have to be very selective with what you do. I have a few friends that have or are dealing with the same issues as we are. They have had to raise funds to do the tests to find out what their child has and sometimes these tests give you and answer but sometimes they don't as well. It certainly isn't fair having to make these kinds of decisions.