Since I was unable to cut and paste the following update to the You Caring page we have been using for fundraising for and updates on our oldest daughter’s health needs, I decided to post it here (rather than rewrite it) and just post the link over there. You may read more on her battle with chronic illness on the You Caring site (thanks to them for making their site available and FREE!) at www.youcaring.com/healingchristina and that is linked to in the sidebar.
Putting It All Together – – What We Have Learned & Current Treatment Plan (with changes)
From our time in Florida at the Sponaugle clinic we learned that not only did Christina have Chronic Lyme Disease, but a couple of other things were MAJOR reasons she had been unable to get well and had even gotten worse after a brief period of doing better since antibiotic treatment:
(1) MTHFR genetic defect (specifically homozygous C677T) which is a block in the methylation pathway of each and every cell keeping her from being able to fully process folic acid and other problematic results, and
(2) HIGH level of molds, especially the “Black Mold” aka “vomitoxin” (tricothocene mycotoxicosis) plus a few other infections (Bartonella, which we suspected and the protozoa Rheumatica)
Together, this toxic mix had caused all of her hormones to bottom out, leaky gut, all kinds of bodily levels to be way off from where they should be (some low, some high), keeping her body from using nutrients effectively and from expelling (detoxing) cellular wastes due to a depletion of and inability to produce the body’s major antioxidant – glutathione. Her liver was failing and her heart was weak. Her digestive system was wrecked from the mold, antibiotics, etc, and her severe weight loss was alarming to say the least, with muscle wasting and bone loss, also making it even more difficult to treat do to her fragile state. It allowed other infections to flourish. In a nutshell, Christina had numerous intertwined critical health problems, but thankfully, Dr. S. knew what tests to run as well as how to interpret them and treat accordingly!
Though the latest testing showed marked improvements, a high benzene level was something new. It turns out that the previous test results had cut off the benzene result on the reporting so it may have been there all along. Without any large exposures, we concluded that it must have been from lower exposures over time such as from laundry detergents, art supplies, etc. and are trying to avoid all exposures as much as possible. Of course, it is not an ingredient that is always listed clearly on labels.
At this point, after being home from the clinic for a while, we are tweaking Christina’s treatment plan based on what we believe are her current needs, things learned, and seeking to follow God’s leading. Continuing to focus on specific symptoms while supplementing for the genetic issue and deficiencies as well as overall healthy living, toxin avoidance and rebuilding of health and body while detoxing from further toxin build-up are main points. Below are some specific things we are implementing. I tried to group things according to the specific health issues but of course there is significant overlap. We will adjust as we go and as we continue to wean her off of prescription meds, using appropriate alternatives as needed. Christina continues on a very pure vegetarian diet that is gluten-free and dairy-free without any highly processed foods like enriched flours or processed sugars. (She specifically wants to avoid gelatin, dairy, wheat/gluten — and now folic acid — in supplements/meds.) Getting the calories needed is still a bit of a struggle but so much better than before when she couldn’t keep anything down or at times could barely swallow!
I. For the MTHFR genetics (homozygous C677):
a. Glutathione supplementation is still a big necessity. So is avoiding “folic acid” and so we have changed out some of her supplements, including the Essential Pro Glutathione and are now using one without folic acid.(see below.) (We have left off Cellgevity, but are considering adding it back or another supplement from the same manufacturer or another “precursor” supplement as some say oral glutathione does not make it through the digestion process in useable form, yet Christina does tell a difference so it must be working somewhat!)
b. Bio-available Folate is still highly necessary so we continue to use a methylfolate supplement to bypass the defect of the methylation cycle (5 MTHF).
c. Folic Acid avoidance as noted above, is something we have begun to make a point of after learning more about how dangerous it is in the general population, and specifically in those who do not break it down well due to the genetic defect in the methylation cycle and how prevalent it is. A long-time supplement we traded in was Juice Plus (a foundational whole food supplement for about five years) having gotten the official word from the company that they add the synthetic folic acid — we have switched to the Lightening whole food supplements that are similar to Juice Plus but do not have the added synthetic folic acid. The rest of the family can take the Multicolor Lightening, but at present, Christina is only taking the Blue Lightening (comparable to Juice Plus’ purple Vineyard Blend that was so good for inflammation), as she is continuing to avoid all wheat, as well as gluten, and the Multicolor Lightening has wheatgrass in it which she chooses to avoid due to possible cross-contamination of gluten.
d. SAMe, MethylB12 – are still used, plus cyanocobalamin form of B12 that seems to work better than methylB12 alone.
e. Omegas, Zinc (with copper),and Magnesium Taurate – are supplements we are continuing except we traded the Super Critical Omegas for a vegetarian one and the Magnesium Taurate to another brand. And since she can never seem to get enough magnesium, and cannot bathe in Epsom salts, I hope to get a foot bath asap to enable her to have Epsom foot baths without the challenge of keeping her from chills. I have read that magnesium is better absorbed through the skin as well. We found the Zinc from the clinic already had copper so there was no need for a separate copper. Those had been stopped while in Florida as we had traced her after lunch symptoms to those two supplements. We have now added back in the one zinc supplement that already contains copper. (Pumpkin seeds have high mg and loads of other good stuff and she enjoys snacking on them, too!)
f. Niacin – (added) to use in case of symptoms of overmethylation as suggested by Dr. Ben Lynch of MTHFR.net (He has a ton of information and supplements specifically formulated for MTHFR defects. Dr. Amy Yasko has a lot of information available online in her Autism resources as well.) We have not had to use this yet but would temporarily stop the methylfolate as well when indicated.
II. Mold/Leaky Gut/GI symptoms:
a. Gluten-free, dairy-free diet is something that Christina was already doing. Additionally, she eats a vegetarian diet largely free of sugar, most grains, and most additives. This strictness is a fine line to be careful but not obsessive and fearful about, and she is doing an amazing job with it all.
b. Fluoride/neurotoxin avoidance in foods, water, dental products – we had already left off fluoridated toothpaste (and her teeth are doing amazing now, even after baby teeth were cavity-prone and this disease brought on severe and prolonged vomiting that caused us concern about the damage it did to her teeth), but we are working harder to avoid it after learning more about how prevalent it is and that it is a neurotoxin! (She/we already avoids the neurotoxin, MSG and a slew of other additives.) We are blessed to have local artesian wells from which to obtain fresh water! Bottled water is typically lower in fluoride as well. I hope to get a filter for bathing to filter chlorine and fluoride to avoid skin absorption. No toothpaste with fluoride or tapwater if possible, although it is difficult not to cook with it, we are trying not to drink it.
c. Probiotics – continuing with Ultimate Flora 50 Billion that Dr. S. recommended and that we have used before.
d. Intestinew – brand supplement (capsules instead of powder) with glutamine, etc. to help continue heal the stomach, intestines recommended by Dr. S.
e. Enzymes – recommended by Dr. S.
f. Chromium Ultra – recommended by Dr. S. (includes a small amount of niacin)
g. Juicing fresh fruits, vegetables – to take it easy on digestion (about 5-6 times a week for now) as well as getting concentrated nutrition. (It takes a lot of fruit/vegetables to get a little bit of juice, but worth it!)
h. Aloe – capsules
i. Daily fresh air – as much as possible
j. Essential oils diffused in air – to help clean air and for therapeutic benefits
k. VOC and toxic chemical avoidance – With mold it appears that people become sensitized to even low levels and brief exposures to environmental toxins that others may not seem to have a problem with so that it has become necessary to avoid many cleaning products (and places where they use them) – – we use more natural cleaning products, hygiene products, etc. (Mrs. Myers and Seventh Generation brands are good.) We do not eat out often but learned to use the drive-thru (even for the rest of the family) to avoid restaurant cleaning products, especially avoiding public bathrooms! I plan to take along filter masks when we do have to be away from home for a prolonged time.
l. HOUSE –We are taking measures to keep from enticing mold growth, an ongoing process in a humid, Alabama environment.
III. Lyme, Bartonella, Protozoa Rheumatica – Christina’s CD57 marker showed her immune system was working and clearing the Lyme while at the clinic (without antibiotics!). We are not treating for these specifically except as to support her overall immune system and health, plus avoiding anything that would over-burden her immune system. While at the clinic they could monitor Christina’s progress with IV treatment and slow it down as needed. Even then she could not go too fast with the IV detox and never even got to the “killing” phase, yet her immune system did clear some of the infection as her health improved. (The IV aminos were a big help, bypassing the digestion with pure nutrition.) With all the toxic build-up and die-off from her own immune system killing infection we want to avoid moving too fast and risk overburdening her vital organs. We want to continue supporting her immune system, keep her detoxing and build up her body through nutrition, rest and limited (for now) exercise. (By the way, the Bartonella appears to be gone!)
IV. Hormone imbalance: (This is tricky and we are tweaking as we go.)
a. Prescription Progesterone – we will need to get a new prescription for these capsules or use an otc cream. (Christina dislikes the creams.)
b. Prescription testosterone cream – we will need a new prescription if she continues to need this – it has helped with temperature regulation so she is not chronically cold or alternately having hot flashes!
c. Prescription estradiol patch (Minvelle) – we will need a new prescription if she continues to need this (helps with anxiety).
d. Prescription DHEA – have been without this a long time – we may need a new prescription or alternative.
e. Prescription Armour Thyroid – No longer using as of this week; I am looking for a vegetarian alternative to this – trying herbs (see below)
f. Growth hormone injections – not able to take these any longer (plus the insurance special pharmacy will no longer fill this) we hope as overall health improves her natural production will go up.
g. DIM – helps with testosterone processing
h. Chaste Tree berries –(added) hormone help
i. Rhodiola – (added) hormone help, oxygen help
a. Serene and Benadryl as well as Dronabinol (though not primarily for sleep, but appetite) were too strong for her and discontinued either before or after leaving the clinic. We tried melatonin but it was also too strong. (The prescription sleep medication had been dropped early on while at the clinic as it was much too strong!)
b. Valerian – (added) for sleep, pain (Valerian Super Calm herbal blend)
c. Chamomile – (added) for sleep, anxiety
VI. Pain and Anxiety (in addition to those above):
a. Turmeric (added) pain (plus other herbs below)
b. Prescription clonaxepam (generic Klonapen)for anxiety, pain
c. Advil – pain (using less and less)
d. Yarrow – to use for stomach pain
e. White willow – for pain, fever as needed
*Christina does not take much for pain as she has had so much over the years that not only was not alleviated with even strong pain meds, but made worse due to the side effects. We have found herbals seem to be a better balance of pain relief without unwanted side effects.
a. Monolaurin – antimicrobial, immune boosting
b. Dandelion – Pain, appetite, digestion, liver support (alternate with Milk Thistle for liver support)
c. Morenga – amino acids (complete protein), antioxidant, magnesium, calcium
d. Prescription Riluzole (generic Rilutec) – medicine for ALS symptoms (Lowered dosage after original was too strong, tapering off slowly. Replacing with Ashwaghanda Root.
e. Essential oils diffused in air – Thieves – type blend; oregano, lavender (adding frankincense); hoping to use some EO in foot baths with Epsom salts for better results
f. Protein powder smoothies – Vega brand – added nutrition
g. Vitamin D3 – to resume (for energy)
h. Peppermint throat mints – (not the sugary candy, but strong herbal mints for throat, tummy pain)
i. Red root – to add for antifungal properties to treat mold
j. Evening primrose – hormone balance
*We would like to have a new round of testing done, to help ascertain whether further IV treatments are needed but are currently paying off some lingering medical bills and had to postpone our scheduled trip to the clinic in Florida. We may look to see if another doctor will run the tests if it appears we are unable to continue with Dr. Sponaugle in Florida. At this time Christina is making good progress with which we are delighted and tremendously grateful to God for. Special thanks to each of you who have continued to support her (and us) in any way through this long ordeal and may God richly bless you! Anyone who wants to see more of the background of Christina’s chronic health problems can check out the You Caring link in the sidebar.