It has been too long since I have updated. For me, that’s a sign that things have been better. My daughter, who is 11.5 now, has continued to do her daily regimen of medications, herbals, and vitamins/supplements. She sees her specialist 2 to 3 times a year in person and I do phone appointments every 6 to 8 weeks. We just saw her specialist in December and it was decided that we would take her off of the malarone. This is a drug used to treat malaria (which is also given for the parasite, babesia). I will talk more about that later.
I have had some people message me to get updates on mold and current meds and I never added my daughter’s labs for mold so I plan to do that here today.
Let’s start with the mold. We did an ERMI test of the house and it turned out that we have “average” mold so it did not stand out as anything to worry about. It stumps us because my daughter’s labs came back with lots of elevated numbers for mold. She has been consistently improving though so this information will just remain in the back of our minds for now. We did also do a regional allergy blood test for Southern CA and my daughter tested moderately allergic to a number of things including cats, dust mites, bermuda grass, and pollen from some trees. Interesting. She never showed an allergy before to cats but after becoming sick we started to see reactions. Below are the mold labs.
I would like to also list her current medications. (When I link to a website it does not mean I necessarily use that site. It is just so you can have a visual picture and a description of the item. I would recommend searching around for pricing). The only thing we replaced was the Quintessance with Japanese Knotweed and CSA. She currently takes prescription Doxycycline Mono; Nystatin, *Atovaquone/Proguanil (Malarone), and *Alinia. She takes BLt along with the herbal tinctures listed above. She takes the probiotics: Klaire Labs Biospora, Garden of Life Mood+, Florastor. She takes a natural anti-inflammatory called Advanced Inflammation Support (but previously took InflamaAway by Donald Yance). She also takes the following nutrients/vitamins: Methyl B-12, Coenzyme B Complex, Vitamin D3, EPO (Evening Primrose Oil), and Energizing Iron. Some of her detox remedies are Tox-Ease II, Activated Charcoal, and King Chlorella. She also took the homeopathic remedies Mundipur and Renelix in the past. At one point she took prescription colestyramine for the mold. She also sometimes takes Natural Calm (magnesium) and Vital Nutrients Whole Fiber Fusion when she’s having tummy trouble.
If this seems like a lot, it is; however, my daughter has been so good about taking it all and I really do attribute her healing to this regimen. *She stopped taking the Alinia several weeks ago because insurance stopped approving it (and it’s $300/month). *She stopped the malarone about 2.5 weeks ago but has had some complaints the last few days of headaches, stomachaches, rib pain, ankle/knee pain, and shooting pains so we may start up on one or both of those again. It’s very hard to know if she’s having normal aches and pains or if it’s illness-related, but if the symptoms are kind of random and they remind me of her original symptoms, I see red flags. She was still positive for babesia several months ago and I don’t think we have tested again since then.
She also tested positive for mycoplasma, HHV-6, and high eosinophils (which can be indicative of allergies or parasites). The scariest one for me though, is that she tested high on her ANA’s again and specifically for SCL-70, which is indicative of Scleroderma. I hope that it’s a false positive. I have read before that high ANA’s can be falsely positive with lyme disease (and hers were very high at 1:1280 at the height of her illness). Her specialist seems to think it could be related to her chronic infections and says we will just keep an eye on it. The high Human Transforming Growth Factor Beta 1 can also be related to mold, so that’s still a bit of a conundrum to us. (But, with what I have read, it seems to have a relationship to the immune system and inflammation in general so that might be why it’s high). Here are what some of her labs look like:
These are all from last June (2017) and she continues to get better so I just hope that we can stay on the right track. My daughter is a very quiet and stoic child and she does not usually complain very much. So it is often that I will have to ask a very specific question to understand how she’s feeling (like when I’m trying to get information for my phone consultations with her specialist). So, in times when she actually vocalizes her complaints, I know that it is really bothering her. Anyhow, after taking off 2.5 months of school and work in the fall of 2016, we returned to school and work after the winter break in January of 2017. So, this January, 2018, marks a full year back to “normal” and that is exciting news! She still has dermatographia and warts
that won’t go away (so they are being frozen off over time). And I am very worried about the mandatory vaccines for junior high but that is a whole different can of worms.
To look on the bright side, overall, things went so well this year that I actually coached my son’s fall 10-U AYSO soccer team. Both of my kids won first place in their category for the PTA Reflections art contest.
My daughter has stood up in front of the class to give speeches, she sang in the school performance, she has been getting A’s and B’s in school, and she recently received the citizenship award. I just hope this will all continue as we modify her treatment plan and she goes off to junior high.
I really feel like pictures speak volumes. I know that she hit a growth spurt but this past year has made a huge difference just in the way she looks and I think a lot of that is due to healing as well.
A look back at December, 2015
On the left: 2016– she made it in for picture day but school anxiety (PANDAS) pushed us to take the rest of the semester off. On the right: 2017– My 6th grader!