Rebecca from Dr. Wong’s office called me–I guess the results are in

I’ll call Dr. Wong’s office in the morning, but I’d rather not go back there unless I absolutely have to, because I don’t want to deal with people who are not taking our case seriously right now…I don’t mean that in a bitchy way, it’s just I’m struggling badly with this actino infection and I spent most of this week trying to figure out what else I can do because normal standard treatment (penicillin for one year), is clearly not working…

Can you just call National Jewish and get your hands on the results yourself?

If the results of these tests are normal (unless National Jewish wants to see Noah), then I’m dropping the whole thing for awhile–Not because it isn’t serious, but because I have a more serious fight right now on my hands…

If the results are abnormal, then I’d like to know ahead of time if Dr. Wong’s have a plan (or want to discuss a plan) for what is next.

If they just want to say, “it’s abnormal, this is the answer, this is what you should do” they can write that in a report to you. Meaning, if it’s the end of the line for testing, fine.

I only want to take Noah back to see them if they have a plan for what they want to do next. It’s not only is it I can’t afford the time, it’s also that I have a short fuse with doctors on ‘good’ days when I’m feeling somewhat okay, but when I’m really sick and they try to tell me I’m normal…like now…I have zero tolerance. 🤢😡 It just feels insulting to the suffering I’m feeling on the inside.

(At this point, I know how healthy I look and how wrong that is, but I’ve looked healthy my entire life when I’ve been sick so that isn’t an excuse for a doctor to dismiss me, because if they spent two seconds looking at my records they will see this has been a pattern for years–)

I would call Rebecca and say all this myself, (I’ve said worse things over the years) but she’ll just give me the ‘we don’t discuss results over the phone’ line.

I don’t want to waste his time or my time. Since they called me, they might have seen something, but if they didn’t and the results are negative, just thank them for trying, we’re grateful for their time, and I will pick this up again in year or two if I live through this infection.

I literally just sent Dr. sherman this email…I don’t even know if they do anything like this at Cedar, but I thought it might be worth asking him…

There is no way in words I could ever express how grateful I am for everything you’ve done for Noah. When I’m gone, Noah is really going to need you to explain to future doctors what the medical landscape is like for him…Luke is too much like my mother…he’s in a mixture of denial and frustration and lack of interest. All dangerous to Noah’s well being. I always remind Noah he can live a long time, he just will need to have access to medical care. And taking his daily antibiotics is extremely **extremely** important…a lot of problems in my life would have been avoided if I had taken profyatic antibiotics, and especially IV antibiotics at times.

(I wouldn’t be in this mess right now if I had done IV antibiotics the day before and day of getting that salivary gland removed. I told him I was immune compromised, I don’t think he believed me…now that I know what I know about the mouth, I should have probably just left it alone. I just want to make sure Noah learns from my mistakes, so he can live and longer and better life than I did. 🙂


Re: Can you please submit my actino case to grand rounds?

“Immune deficient patient cultured positive to actinomyces and streptococcus in November 2015, a complication from the removal of an inflamed salivary gland. Current standard treatment is Penicillin for a year, however due to patients pre-existing immune deficiency, two years of IV pencilliin alternating with IV Meropenam have not cleared infection. Patient admits to some compliance issues, due to keeping fungal infections in check, but mostly she has kept on treatment regiment. Multiple ultrasounds show inflamed lymph nodes, most likey due to this infection. Patient has also had two subsequent surgeries to drain cysts, but it still not brought a resolution. NIH reports a similar case of a young girl with Immune deficiency, also with actino, who cleared it with IV Levaquin and IV Cefriance for one month. Any thoughts or suggestions on a treatment course, either western or eastern medicine, would be greatly appreciated.”

I think if you ask some medical students or residents, they might come up with some creative answers…we old timers tend to get stuck in our own ways, it might be interesting to hear what some young enthusiastic minds think 🙂

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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