My daughter was born completely healthy. She met all her milestones on time. Health wise, as a child she had asthma which was usually more symptomatic with upper respiratory infections that she would get approximately once or twice a year. She is allergic to Azithromycin and used an albuterol inhaler as needed.
The Downward Health Spiral After Gardasil and Other Vaccines
In August of 2012, she had six vaccines for school: the DTAP, chickenpox, MCV4, Hep A, the flu shot, and Gardasil. Within 24 hours she had a seizure and difficulty walking. I was told she was having “complex migraines “. With time the migraines progressed. Her MRI was normal, but fainting and seizure like activity continued. This led to an EEG test that was normal. Maxalt was tried but triggered heart palpitations and a rash. Imitrix was tried but did not work.
In March 2013 she was admitted to the hospital for an IV medication called DHE that was supposed to reset her so she could be put on preventative migraine medication. That treatment failed, and the migraines returned forcing us to home school her. She was put on Topiramate and Focalin for ADHD. She then had her adenoids and tonsils removed due to tonsil stones that did not go away with amoxicillin.
Already Ill, She Was Given More Vaccines: Gardasil and the Flu Shot
In October 2014, she went in to her pediatrician for a barking cough, which was asthma related and got her second dose of Gardasil and a flu shot. The next day she collapsed at school with another seizure, which was witnessed by school staff. Her neurologist put the connection that Gardasil had caused her symptoms. I was told to make sure she did not get the third dose.
By November 2014, she stopped menstruating. We waited for it to come back and by February 2015 she lost a significant amount of weight, had fainting episodes, stomach cramping, pain, mood swings, the GI doctor diagnosed eosinophilic esophagitis. She was put on Prilosec and probiotics. We were told to eliminate gluten and dairy. It took me months to find a gynecologist willing to see a 14 year old. She was seen in the ER for stomach pain when they found ovarian cysts. Gynecology finally agreed to see her. She had surgery to drain cysts on her ovaries, remove a fibroma on her left ovary, and drain nabothian cervical cysts. She was put on progesterone to try to trigger a menstrual cycle and other than light spotting, it failed.
We got a second opinion with a neurologist who did a CT scan and more bloodwork. She was diagnosed with vasculitis, high testosterone levels, seizures, abnormal hair growth on her chest, legs, and lips. A different type of progesterone was tried along with Keppra for the seizures. Keppra was discontinued three months later when her EEG came back normal. Cardiology did a tilt table test. She was diagnosed with Dysautonomia/POTS. We were told she needed to increase her salt intake and water. She was tried on Ludent, which caused her to break out in a rash. Gynecology tried metformin for insulin resistance and rapid weight gain. Metformin caused hallucinations and mood swings. Her new primary diagnosed her with Ehlers-Danlos syndrome with hypermobility, and mast cell activation. Her doctor also wanted her to have saline IV hydration four times a week with a home health nurse because her body does not absorb water to keep her hydrated. I think she said it was due to hypertonia. Her neurologist gave her Inderal after cardiology refused to treat her.
She had another surgery for ovarian cysts and endometriosis in January 2018. Gynecology does not know what to do next. We declined Lupron. We were told she would have removed the left ovary if she was older because it is covered in cysts too small to drain and we were told today that her left ovary is not savable and will need to be removed by the end of August. The right ovary will need to be drained and a D & C will need to be done to get rid of the endometriosis. Hormonal birth control pills are not an option because of the risk of heart attack and stroke. An IUD could slip out of place due to EDS. Progesterone triggered seizures. Estrogen can make her bones more lax and cause more seizures. So the current doctors do not know how else to treat her.
She is allergic to nightshade vegies, tuna, gluten, dairy, all types of nuts, tomatoes, salmon, and shrimp. She is also allergic to Toradol and Percocet (after surgery meds) and Macrobid, Azithromycin.
Due to the allergies vegan diets caused GERD, nut allergies make paleo not an option. I don’t want multiple surgeries and pain to be part of her life, but right now we are stuck and I’m looking for any options that may help.
Medications, Diet, Reactions and Allergies
- Inderal 60 mg daily
- Saline IV infusion 4xs a week
- Hydrocodone for an ovarian cyst, nightly as needed. Surgery pending.
Past Medication Reactions
- Azithromycin: rash and trouble breathing
- Maxalt: heart palpitations
- Toradol: rash
- Metformin: hallucinations and mood swings
- Progestrone: increased seizure activity
- Macrobid: rash
- Ludent: nausea and hives
- Beans (either black beans or pinto)
- Rice (Jasmine or brown)
- Cesar salads
- Cucumber with lemon
- Gluten free pasta
- Honeydew melons
- Smoothies (any variety of fruit, kale, spinach and yogurt)
- Occasionally she will have pizza or hamburgers even though it makes her feel bloated
- Carne asada tacos
- Green beans
- Drinks water and Gatorade for hydration
My daughter’s health continues to decline and her doctors are at a loss as to what to do. We are looking for input about how to recover.
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I’m so sorry you all had to go thru this. To be honest, she sounds like an EDS patient. We might have the craziest medical backgrounds ever. My kids and I all have HEDS with POTS, dysautonomia and mcas. My son hasn’t had a flu shot in 7 yrs because of reactions. I didn’t get sick with autoimmune diseases until I was in the military. They pump everyone with crazy inoculations. I’ve always associated the 2 things. I hope it gets better for you all💜🦓
This is amazing! I wish I found this when my son was damaged. Had to figure it all out on our own! The only thing I would add is that periactin (an antihistamine prescribed by the neurologist for daily persistent headaches) seemed like a part of our miracle cure. Helped with the MCAS reactions that we didn’t know where happening! We also had serious adrenal fatigue that we supplemented A Drenal by RLC labs and that made a HUGE difference in the brain fog, stopped the coffee cravings, made him able to wake in the mornings, he could talk and converse again instead of just a brain fog wall, and he wasn’t all shakey anymore.
I don’t get it. Like your daughter, I was damaged by vaccines. Three years ago, I was diagnosed with Wegener’s after a positive brain biopsy. I’ve spent the last three years learning just about everything I needed to learn. I almost died after many drugs were tried on me. In the end, I saved my own life. I’m now drug and vaccine free, except a once every six month biologic infusion. I’d like to stop that too but the doctors are not ready to give me their blessing. I can tell by your letter that you are much closer to the beginning than the end. No one, in the know, would give their kid Gatorade. Also, there doesn’t seem to be any pattern to what she is consuming. It appears to be a hodge podge of web site recommendations. It pains me to hear stories like this, especially when it involves young people. It would be in your best interest to learn as much as you can about immunology. I swear I’ve got a masters level on the subject by now. My doctors know better than to screw with me. I know much more than they do about my illness. After all, I’ve lived with it.
I hope you are making some progress moving into a better healing cycle. I Just wanted to add a possible area of inquiry for your daughter’s treatment team–some type of porphyria or heme synthesis difficulty due to either her genetics or a secondary reaction to the vaccinations.
I write this as someone who developed MCAD-primary after an adverse reaction to an H1N1 flu shot in 2010. I never had migraines before that shot. I am also diagnosed with c-EDS, dysautonomia, Hashimotos, and a compressed and degenerating c-spine. I cannot tolerate many meds or supplements I have many CYP450 variations, other transporter variations on genes like ABCB1 and ABCC6 and heme pathway pathological variations.
You might want to check out Neil Nathan’s MD website and new book Toxic in addition to the Hormone Matters articles.
Gentle Hugs and peace
Please see someone who does Nutritional Response Testing to handle her core issues.
N acetyl cystine
Acetyl L carnitine
Histamine intolerance? Avoid high histamine foods e.g. strawberries
H2 tabs–molecular hydrogen, use in fiji 1 L bottled water
Positive affirmations for healing
Earthing, bare feet to moist soil or grass, twice a day. If dry use watering can and “water” feet on soil
Heavy metal testing
Vitamin B complex-whole foods based, folate not folic acid!
Avoid foods fortified with folic acid
I’m very sorry to hear this. Is she living and especially sleeping in a clean environment? The sleeping environment and the whole house should be mould-free. Even if there isn’t visible mould, the building should be free of water damage.
That’s not to say mould is necessarily the source of the problem (obviously there are some othermajor correlations that you describe), it’s just mould can be a relatively accessible way to reach significant improvements in some people who tend to have toxicity reactions. There’s no way of knowing whether or not it could work for you. If you have time and are interested, you could look at the Paradigm Change website, http://paradigmchange.me/ . You could also contact the CDC: their web page on mold is out of date but apparently in October 2017 they revised their position on mold to recognise its possible role in serious illness. You might need to keep asking until you get someone who knows about the 2017 revisions (which I only know about second hand).
I just read your article to my husband. It is the illustration of our daughters. The 3 of them have been going down this road in fits and starts for years. The oldest 30, she started at birth before we left the hospital.
We were bouncing from specialist to specialist. Endlessly!
Ultimately, trying to get an application process started for disability. Only one could maintain a job. My fear being, what will happen if we are unable to care for them?
At 25, we began to step away from Drs, the endless appointments. The oldest began recovery, each in their turn recovered.
I do not pretend to know all the answers. There are some effective helps that are safe alongside allopathic treatment. I will list by the effectiveness. Our oldest could not tolerate any supplements or remedies. Food reactions were our life, nightshade the worst. She could no longer have any in the house, go in restaurants, or the lunchroom at college. No stores.
No drivers license.
The other 2 variations of the same with individual twists and turns.
PCOS, ruled each, the youngest the biggest impact. Much like your daughter.
I have an entire dresser of drugs that did not work or made things worse.
The HPV vaccine, we did not have. I suspect some of this still might help, at least give her a good foundation to rebuild her health.
First and foremost, read Dr Lonsdales articles regarding thiamine. This foundational health is critical to optimizing your efforts. Easy to understand, the book he and Chandler Marrs wrote has been a revelation. Since I was using thiamine for my own recovery. I had a little understanding of its importance. Without their input my recovery would have stuttered and stopped. Instead I am seeing results nothing short of a miracle.
The foundation of life on our planet is built on sunshine. From sleep to good health while awake. Imperative. A good quick overview is available on You Tube. Dr Michael Holick. Very good solid health to rebuild is within these 2 things. Grassroots Health on fb or Google it. They have home tests. If you wish.
Our oldest, no supplements, we had to approach with the this with amounts of foods she could tolerate. So we turned her digestion around. After a whole lifetime of hell.
Bulletproof coffee was how we started. 1 cup of coffee in the blender 1 scoop of collagen 1 tbsp MCT oil, 1 tbsp butter.
She started to be able to walk around without falling. So everyday she made herself a cup or 2.
I contacted an herbalist at that time, his suggestion was to blend her food. Every morsel. It looked like cream soup. We used bone broth or coconut milk or water to break things down in our $20 oster blender. Whatever I made, pot roast, steak, carrots, sweet potatoes, liver, all were blended.
The two together, bam she was upright. A real living miracle.
I won’t beleaguer the point.
For each member of our family, the biggest impact. Fluoride removal. From our bodies from our water, the drugs that contain it. This stopped nearly all the PCOS symptoms. We achieved this by each drinking 1 liter of water with 1/8 tsp of 20 mule team borax. Through the day. 4 days out of 7, the PCOS symptoms within 24 hour melted away. Youngest got her first period in 5 years. We use a Berkey Filter in kitchen now. A Pelican shower filter adapted to the shower head.
Second stage of cyst removal over time. Castor oil packs on the ovary. 5 folds of cotton flannel in a ziploc. Pour in castor oil to saturate. Pull out using bag as a squeegee. Lay flat. Add magnesium oil, DMSO for penetration. 1 capful. Wash skin. DMSO carries through the skin to organs, anything and everything. Lay on an old towel, apply pack, layer of saran, heating pad on medium. 20 minutes. As often as possible. To break up and eliminate the cysts. Which are usually full of calcium. When no vitamin d is present calcium is not able to get into bones. D is its escort. So it floats around in circulation. Forming into cysts and in joints. Stones in bladder and kidney. Kellys spleen would distend with congestion. Castor oil packs solved it.
Magnesium oil, buy mag flakes, Lifeflo is good.
60% flakes 40% spring water in a mason jar, let stand 1 hour. Buy 16oz glass sprayer bottles. Fill with oil. This will further displace that excess calcium. Can be sprayed on for pain. Stings if it is low in body add castor oil to site, reapply mag until stinging stops, then you know your levels are up and good.
Internally 250 mg 2x a day, mag malate for runny stool types, mag citrate for constipated types. Very constipated. 5 drops of mag oil in water is equivalent to 250mg. Plus topical applications.
Mags job in the body is vast, head to toe. In digestion it creates strong supple sphincters in each organ. Allowing optimal function. Bones connective tissue recovery.
Reactions, food and environment, allergies. NAC n acetyl cysteine. The precursor to glutathione, which creates it in the body. The best and easiest way to build up this critical nutrient antioxidant . Stops excess mucus, helps coughs. It is the miracle amino.
500 mg 3x a day during recovery.
Quercetin, runny nose, cramping, exposure to triggers
Bromelain, enzyme, assists digesting out the offender, breaking it up, rendering it harmless.
The 3 together the perfect fix for reactions although each is excellent for many other things. This trio is a lifesaver.
Everything I read about EDS is related to low Amino’s, unabsorbed or faulty. If it were me this is what I would do at least for a week, to see if it gives her a boost. All are harmless.
At the start of each meal a full spectrum protein digesting enzyme with hcl.This will help her body break down food and make nutrients available to her liver rather than passing through undigested into waste. So her body can get its own supplements through food. Rebuilding her health and digestion.
Miracle Amino’s, worth a book of their own. Each a small miracle of wellness. Rather than writing a chapter on it. Try taking a full amino blend and a BCAA amino. 20 minutes before a meal. This is a way to make digestion where there is none. We must do this for my husband as he has no duodenum.
1/2 hour after food, 2 x a day baking soda. 1/2 tsp of bsking sofa in 1/2 glass of water. 5 days out of 7. This provides alkalinity to entire body. Improving digestion, sleep, stages if sleep. In elimination it keeps bladder and kidney efficient removing toxins and garbage. Spiffs up intestine. Read the book, PH Balanced for life. P. Napatalung. Critical to human health.
TRS. The newest heavy metal remover on the market for vaccine damaged children. I do not know enough to comment. It is out there though.
Heavy metals and rancid fats removal, key to liver function and vaccine damage, any damage really.
How we did it, 2 tbsp non GMO lecithin and 1/4 tsp cilantro 2x a week. This could be added to your bone broth bulletproof. Or in food, or off a spoon. Liver can then function brain calms down with added magnesium you are looking at recovery. Magnesium oil applied to gums helps seizures for some.
Eliminations to heal
Vegetable oils, butter or coconut oil only
Table salt, sea salt only
Detox bath, my formula
2 cups Epsom
1 cup 20 mule team borax
1 capful fish tank dechlorinator,
1 cup hydrogen peroxide. 20 minutes or longer as often as possible, foot soaks in buckets, 1/2 the ingredients..
Chandler Mares, Dr. Derrick Lonsdales book and articles
Earth Clinic, Teds Remedies. He was the start of our health. Saved our lives
Dr Michael Holick
Tony Pantellaresco, You Tube. His early videos taught me how to make tinctures and formulate blender helps, he is the source of the blended food idea. Herbalist
Rick Simpson, cannabis formulations a good source for learning, although using cannabutter recipes for some things looks promising.
It might help to get her genetic testing.
Also check out the resources at this site: https://www.ehlers-danlos.com/patient-support/
Having access to other people suffering a similar disease can help enormously. When your body is strange you feel rather alienated. So maybe there is a facebook or other forum group where she and you can connect.
Beware of the craziness that is the internet, there are many many diets out there that people are following that are weak on one or more nutrients. They may be fine for otherwise healthy people but people with special conditions need to be on a diet tailored for their needs. See if you can find a reputable and experienced “Registered Dietician”. A registered Dietician is different from a nutritionist who is not qualified to address complex cases. A registered dietician is qualified to provide enteral feeding if needed therefore they won’t recommend a fad diet. The site I noted above may be a place where you could find a dietician on the internet if you can’t find one near you.
I have multiple food allergies and absorption issues and GERD. I’ve struggled to get adequate nutrition for years.
You might find this guide helpful in diet planning.
Prilosec is not without problems. I’m going to explain in more detail and can provide scientific papers if you are interested. This is an issue I am looking at for myself. I have not figured out how to get off Prilosec. It causes a backlash if you try to stop it and you wind up with very high acid. Allergy exposures release lots of histamine which causes a big increase in acid release. I lose all nutrition due to overacid if I try to go without Prilosec, so please don’t do anything rash.
Prilosec is an ABCB1 transporter blocker. ABCB1 transporters are cellular garbagemen. They take bad stuff out of the cells for removal from the body. Prilosec can cause B12 deficiency due to blocking uptake (in mice). You might try finding a good sublingual or liquid B-complex supplement.
I found some stories that might help.