————— UPDATE 8-14-2023 —————
Dear Friends and Family,
This update comes with mixed emotions. From the previous update (Angelina’s video), you can see her optimism, positive attitude, and hope. She still has these, but this last week, she had a serious setback. Please watch the video for more information. For more details, you can read the text below the video.
We’ve discovered that, on top of all the other things she’s being treated for, that she likely (we should get results of tests in a couple weeks) has a rare genetic condition/disease called Porphyria which can manifest in various ways (there are different types of it). It can be very mild in that many of those who actually have it may never see any symptoms – there is usually something that may trigger an “attack” which we discovered this last week can be very serious.
This last week, Angelina developed excruciating abdominal pain which was then followed by numbness and tingling in her feet that then spread to the rest of her body. She also experienced chest pain, heart palpitations, visual problems, and anxiety which she hasn’t really had before. We had to take her to the Emergency RoomThese are all common symptoms to Acute Porphyria which manifests in the nervous system, can produce intense pain, wreak havoc on blood sugar levels, cause nausea, vertigo, muscle weakness and if not treated can lead to paralysis and death.
A description of what causes it from the Cleveland Clinic:
Each type of porphyria is caused by low levels of a specific enzyme (a specific enzyme [chemical] for each type of porphyria) that is needed during the making of heme. Heme is an iron-containing pigment that is vital for all the body’s organs. Heme is part of the hemoglobin in your blood. Hemoglobin carries oxygen to body tissues and gives red blood cells their color. Heme is also part of proteins in the liver that help the liver function properly.
In the several-step process of making heme, several other compounds – called porphyrins and porphyrin precursors – are created. If there is a low level of any one of the enzymes needed to make heme, these porphyrin and porphyrin precursors build up in the liver, skin, and other body tissues. When they build up, people may develop symptoms of one of the types of porphyria.
https://my.clevelandclinic.org/health/diseases/17760-porphyria
The good news is that we’ve identified this and there are things that can be done to manage or treat it. The first is a change in her diet. Those with Porphyria need a diet with about 70% carbohydrates. This was completely different from the diet she was on to try to help determine eliminate anything her body might be allergic to. But when we gave her some sugar and carbohydrates, she felt much better – but it only lasted several hours. It’s likely the body needs to break down all the porphyrin and porphyrin precursors that built up in her liver or other organs before we see her feeling much better.
So we will be meeting with the doctors this week to determine what we can do. On one hand, we want to continue the treatments to eliminate as much of the Lyme and mold in her system. But we don’t want to tax her liver and cause this Porphyria attack to continue. So please continue to pray for us, for wisdom, and especially for God to heal Angelina.
We truly appreciate each of you. We thank God for all of you and ask him to bless you richly for your love and support.
————— UPDATE 8-14-2023 —————
Dear Friends and Family,
Angelina wanted to express her gratitude for your prayers and support and to give you a better idea of what her condition was like before coming to Florida, what doctors here found, and how she is progressing. You can see her in the short 16 minute video below:
We’ve had to extend the time Angelina needed to stay here to complete her treatments. So we truly appreciate your continued prayers and support. We would like to express our gratitude to you all personally, but we don’t have contact info for all of you and the platform currently restricts “thank you’s” to just 100 characters. May the Lord bless each of you for your kindness and generosity!
P.S. If you know anyone who would prefer to shift some of the money they pay in taxes toward helping someone in need, feel free to send them to this campaign… every donation is tax deductible.
————— UPDATE 7-30-2023 —————
Dear Friends & Family,
We’ve seen some progress for Angelina. Though it’s slow, it’s promising – more details are provided below. But I didn’t want our need to be missed because of the progress.
We’ve had to increase our fundraising goal. Our medical expenses are higher than expected. As mentioned in our previous update, Dr. Minkoff referred us to Dr. Julie Mayer Hunt, an Upper Cervical Specialist, to address Angelina’s Cranial Cervical Instability. That is an expense we were not expecting but we are grateful for her expertise. We’ve had additional expenses for MRIs, a PICC line, additional doctor visits, and medical supplies. On top of that, Don’s current job workload has really dropped off.
So, we pray that you will help us to be able to afford to stay through August (we may need to stay another couple of weeks in September to complete her treatments). We are already so humbled and grateful for what each of you have already done to support us in this trial, so it is difficult for us to ask for additional aid. But if you know others who could donate to this campaign: a business owner, a charitable organization, anyone who knows someone with a similar medical condition as Angelina, or anyone with a large following who would be willing to share this campaign with their contacts, we would truly appreciate your asking them on our behalf.
Now on to the progress.
Angelina’s Neck
Angelica has had several appointments now with Dr. Julie Mayer Hunt and, looking at their scans and the MRIs, she has clearly stated that she thinks she can help Angelina. Angelina’s top two vertebra were both misaligned and slightly rotated opposite from each other. On top of that, the “tonsils” of her brain extend about 4.2mm into that area which the doctor believes is a large reason for many of her symptoms. This is because it can hamper the flow of blood, spinal fluid, create more pressure on the brain and press on the vagus nerve which can affect the autonomic system that regulates all the involuntary body functions. This can also be very detrimental to the immune system and could be a factor in why her body may not have been able to fight some of the infections she is facing.
The doctor believes if she can realign the top two vertebra that it will force the brain upward and alleviate many of her symptoms. The doctor has already made some adjustments and the difference in the x-rays before and after were striking. Apparently, the brain always wants to keep the head level, and if there is a weakness in the neck causing the head to tilt slightly, the brain will send signals to the rest of the body to compensate for the tilted neck leading to poor posture – one shoulder might move upward as well as one hip to compensate for that. When Angelina had her first examination with her, one leg appeared shorter than the other, and it actually felt heavier than the other leg when she was asked to raise them. After she made an adjustment, the legs felt the same weight to Angelina – that change was almost immediate. This last week, both legs now appeared to be the same size, because her posture is being reset with the realignment of her top two vertebra. She said Angelina will need continued adjustments for 4-6 months to help maintain the new alignment as these kinds of changes in structure need reinforcement to become permanent.
Infections
We just had a review of all the lab tests that Angelina underwent the first week we were at Dr. Minkoff’s clinic. These tests were to help confirm the doctor’s findings and to find anything else that might be an issue. They largely confirmed what Dr. Minkoff found. Angelina has 3 strains of Lyme disease, mold toxins, some heavy metal toxins, and a “leaky” gut – in particular, her large intestine is a problem area for her. The gut is another key factor in the immune system as it is meant to protect the body against the harmful waste and bacteria that are present as we digest. But if the gut is weak, these things can break through the intestinal walls and the body’s reaction to fight it can create inflammation, and that can result in pain.
Angelina is being treated for these things via many supplements, IVs, Hyperbaric Oxygen Therapy, Ultraviolet Blood Irradiation Therapy, HOCATT therapy, … These are all to restore her gut health, give her body the nutrition it needs to strengthen her immune system, and to destroy the harmful bacteria and pathogens in her body. Currently, Angelina feels horrible for two reasons:
(a) she is doing much more than she used to. Before she was up for only 4-5 hours in the day. Now she is up for about 10-12 hours, which is exhausting for her.
(b) she is experiencing detoxification. Sometimes, when bacteria are under attack, it can cause more inflammation which can increase one’s pain. All the patients we’ve met have experienced this kind of an issue – if often gets worse before it gets better, you just have to be patient and stay the course. Several of the patients we’ve met with similar situations as Angelina have now completed their treatments and have gone home to full-time jobs, or to college. But they went about 4 weeks in their treatment without seeing much change, and then sometime after that they started experiencing improvement. They will have to watch their stress levels, but they are feeling much better.
Angelina has a beautiful attitude. She is feeling terrible, and yet she is hopeful, seeing what she’s experiencing as her body getting rid of things that are harming her. She is even encouraging other patients she meets at the clinic. This week, we had a priest come to give her communion and the anointing of the sick.
That’s about all for now. We are hoping to see some improvement in August.
Thank you again for all of your prayer and support. We could not have started this without you. But we aren’t through it yet, and our expenses are greater than estimates given to us. So, if you know anyone who would be willing to help our daughter, we could really use your advocacy. All donations are tax-deductible – whether from an individual or business. We lift all of you up and ask the Lord to pour out his blessing and grace each one of you. You have been a wonderful witness of God’s love for us.
————— UPDATE 6-21-2023 —————
Dear Friends and Family,
We wanted to update you on how things are going. We had our first appointment with Dr. Minkoff on June 15. All we can say is “Wow!” We are so impressed with him. He has a vast array of knowledge, and yet he is quite humble, approachable, a good listener, and down to earth. After his examination, he diagnosed Angelina with the following:
- Lyme’s disease (he believes that she has several strains of bacteria that cause it)
- Parasites
- Mold toxins
- Her large intestine is weak. He believes she has a “leaky gut.” In a way, we all have a “leaky gut” – the mucous lining of our intestines is designed to absorb water and nutrients from our food into our bloodstream. But some people have increased intestinal permeability that allows more than water and nutrients through – they can potentially allow larger molecules including toxic ones. Part of the job of the intestinal lining is to act as a barrier to bacteria and other infectious agents inside the gut, and if the lining is somehow compromised, these can get into the body.
- Gluten intolerance
- Cranial Cervical Instability (previously diagnosed)
When finding out that Angelina had also been diagnosed with cranial cervical instability, he was impressed, saying that most doctors miss that, and that he himself has learned that it can be a major reason for many of her neurological issues (vertigo, nausea, autonomic system problems, presyncope, etc.) This condition could be the result of genetics or trauma like being in an accident. He said he knows the premiere Doctor (Dr. Julie Mayer Hunt) who specializes in this (he co-wrote a paper with her) and that she’s just 1 mile away from his clinic! He’s referred about 1,000 patients to her and she’s had tremendous success helping them. Cranial cervical instability presents a weakness to the neck area, around where the skull meets the spine. Her head can turn slightly more than it should which can cause vertigo and nausea. But beyond that, the weakness can allow the area to compress more than it should which can disrupt the flow of blood and spinal fluid and increase pressure on the brain. That can obviously impact how well the brain can function or respond, especially when coupled with poor circulation and other issues her body is facing. I asked Dr. Minkoff if he considered this a separate issue or a central issue, and he replied that it can be just as serious as Lyme’s disease, that all these things are creating a “sandstorm” in Angelina’s body. To learn more about this, see the paper he cowrote with Dr. Julie Mayer Hunt at: https://www.townsendletter.com/article/a-mystery-answer-to-restoring-brain-health/
Angelina had been tested several times for various infectious diseases, including Lyme’s, but they’ve always turned out negative. He said that the problem with these tests is that all the standard tests that most doctors run are based on finding antibodies. However, many of the bacteria that cause these diseases surround themselves in biofilms which prevent the body from detecting them and therefore, they don’t produce antibodies to destroy them. It is so sad to learn that so many facing similar conditions could be misdiagnosed.
He took a drop of her blood and examined it under a dark-field microscopy scope (900x magnification) and we could all see what was in her blood. It confirmed that her body is infected by several things. The red blood cells are supposed to be electrically charged in such a way that they repel each other – so they can get through the tiny capillaries in our bodies (where they can only go through single-file). And she did have areas with healthy cells. But there were also areas where the blood cells were stacked like coins – which would lead to poor circulation. He also showed us areas where there were biofilms present, areas where blood cells were ruptured, as well as biotoxins that could be from any number of things (including medications she may be taking). On one level, this was all difficult to see, no parent wants to see their child facing something like this. But, on another level, it gave us hope – because we saw a reason for her poor health condition that we can now address.
Medical diagnoses like ME/CFS are just a description of the symptoms one is experiencing. It’s completely different from something like measles where you know what the cause is. When you know the cause, you can try to do something to remove the source of the problem. But, because Angelina’s doctors never examined her blood under a scope, where they would have been able to see that her body is fighting a major infection, and used tests that could not detect the biofilms or bacteria, they were left with just trying to alleviate the symptoms – with the potential of allowing the infection to do more damage. I know her doctors all meant well, but it shows a real weakness in the medical field, it is a rare thing in the USA for a doctor to view the blood under a scope – the standard is to send blood samples to labs that look for chemical markers in the blood.
This week, Angelina has been wiped out. She’s not used to being awake for more than 4-5 hours in a day, but she’s had to be up, at the clinic, donating blood or other samples while fasting beforehand. Next week, her treatments will start, and it will be a difficult regimen for her initially as she will go in 5 days each week for possibly 5 hours each day. Her treatments will include supplements, IV vitamin & mineral therapy, hyperbaric oxygen therapy, ozone therapy, and pulsed electromagnetic field therapy (see links below for more info on these therapies). This regimen is designed to give her body the nutrients that may not be getting where they need to go and to help eliminate toxins and bacteria so that her immune system can strengthen, and her body heal. We will also be making an appointment with Dr. Julie Mayer Hunt who specializes in cranial cervical instability. Beyond that, we need to change her diet to a paleo diet.
Angelina was very happy with the appointment and diagnosis. Though it’s hard thinking about these things in your body, it’s a relief to know there are issues that can be dealt with – it gives her more hope. But please continue to pray for her. She’s already exhausted. We are very proud of how she is handling all of this, but she needs the physical stamina to continue, so we appreciate your prayers!
The expense for her treatments is at the top of the range we were told would probably be expected to help her recover. We also did not know there could be a way to treat her Cranial Cervical Instability (CCI), so we did not plan for expenses related to that when we first set our goal for this campaign. So we’ve had to increase our fundraising goal. We didn’t want to do that, but it’s a necessity for us if we hope to have her treated for the CCI and meet some of the other expenses we are facing here. So, please continue to share this with others for increasing prayer and support.
We know that God could heal her with 1 word if he desired, but we also know that he often chooses to bring good out of suffering, and we have seen tremendous good come from Angelina’s situation. We’ve seen God work in Angelina and in each of us. We’ve seen an explosion of people turning to God in prayer for us. And we’ve seen an outpouring of generosity as each of you have given freely to support this effort.
We truly appreciate each one of you! May God bless you abundantly for all the ways you’ve shown your care and support!
If you’re interested, below are some links to the various therapies:
https://www.lifeworkswellnesscenter.com/therapies/iv-therapy.html
https://www.lifeworkswellnesscenter.com/ozone-therapy/ozone-therapy.html
https://www.lifeworkswellnesscenter.com/therapies/pulsed-electromagnetic-field-therapy-pemf.html
————— UPDATE 5-26-2023 —————
Dear friends and family, thank you so much for your love and generosity. You have helped us to get over the halfway mark of our goal!
Just over 2 weeks ago, we weren’t sure how to go about making plans to proceed. Would we have the funds for more than just the initial evaluation—should we plan for a week’s stay for the evaluation and potentially risk not finding the longer-term housing we would need to pursue Angelina’s treatments?
We continued believing that if this was God’s will, he would provide the means for it, and now we are seeing his provision come through because of your generosity. We still have a ways to go, but because of your kindness, we’ve been able to take action and book a flight and find a wonderful place to stay. The owners of the condo have been very gracious and willing to work with us to keep prices as low as possible. They even have a friend who was successfully treated for Lyme’s disease after being treated by Dr. Minkoff. They think very highly of him. Some dear friends have also given us a wheelchair and walker to help us! We are truly overwhelmed by your love and care for us and deeply grateful for all of you.
We have our initial appointment with Dr. Minkoff set for June 15. It is coming up fast! Please continue to pray for this effort, and share it with others so that, with God’s grace and the kindness of others like you, we would be able to find all the funds we need for her treatment. Thank you and may God bless you 100-fold for your love and generosity!
————— Original Post Explaining The Campaign —————
Please pray for and support our daughter, Angelina James. She is 20 years old and has been diagnosed with Chronic Fatigue Syndrome, also known as myalgic encephalomyelitis (ME/CFS).
Her illness started nearly 3 years ago in June, 2020 when she was finishing up her junior year of high school. Angelina experiences chronic fatigue, dysautonomia, cervical-cranial instability, orthostatic intolerance, presyncope, severe headaches & other pains, brain fog, vertigo, visual snow syndrome, and light/noise sensitivity, among other things. Her condition worsened to the point where she had to drop nearly all of her senior classes and could barely finish the few classes she needed to graduate. Since then, she has rarely been able to get out of bed for more than 4-5 hours in a day.
The name “Chronic Fatigue Syndrome” doesn’t do justice to the wide variety of symptoms that those who suffer from it experience. Many have a hard time understanding it because we take so much of our health for granted. It is a condition where the body simply cannot generate the energy needed to perform even basic tasks. Everything we do takes energy, even simple things like thinking, talking, eating, breathing, etc. For most of us, we are “refueled” after eating, resting or sleeping. However, for Angelina, she is like a cell phone whose failing battery only has a 5% charge left, where just a drive to the doctor’s office is enough to cause her to “crash” and it could take days or weeks for her to recover.
We have taken her to numerous doctors and specialists including infectious disease specialists, neurologists, autoimmune specialists, cardiologists, POTS specialists, and geneticists. However, none have been able to determine the root cause of her condition or a way to cure it. Prescriptions have only lessened her pain, but can also cause other side effects and potential long-term damage. Nothing has helped her fatigue or other symptoms. It seems the only thing the doctors are testing out are pharmaceutical approaches which at best “might” alleviate some of the symptoms, but these are not financially sustainable in the long-term and it’s hard to tell what kind of toll they can take on her body in the long-run.
Her mother recently connected with an old friend who pointed her to Dr. David Minkoff, who operates LifeWorks Wellness Center in Clearwater, Florida. Dr. Minkoff has a long history of medical training, and has worked in the ER, as a pediatrician and a specialist in infectious diseases. He is always researching additional ways to help the body heal, and has come to see the limitations in conventional medical work, which often leads to misdiagnoses and a focus on treating symptoms rather than discovering and healing the underlying condition.
Dr. Minkoff specializes in cutting-edge alternative treatments for chronic illnesses and has an 85% success rate in diagnosing and curing the underlying condition. He does a much more thorough set of tests, including dark-field microscopy, to better evaluate the patient’s blood – something that most doctors are not equipped to do.
Please help us raise the funds to pursue a diagnosis and treatment with Dr. Minkoff. Though his tests and treatments have had tremendous success, they are largely proprietary and cutting-edge and are therefore not covered by insurance. Typical treatments have lasted between 2-4 months and would require that the patient remain in Clearwater, FL for the duration. Estimated costs for diagnosis, treatments, travel, food, and lodging may be between $25,000-$40,000, depending on what the diagnosis calls for and the duration of the treatments. We are hoping to raise at least $3,000 quickly so that we can get Angelina to the clinic (in mid June) for a thorough diagnosis and treatment plan.
We truly appreciate any and all help. No donation is too small. Another huge way to help is to share this campaign with those in your sphere of influence.
Why Use GiveTaxFree.org?
In determining the crowd-funding platform to go with, we were looking at several including GoFundMe. We decided to use GiveTaxFree.org so that any donation provided would be tax deductible. We know that those of you who give to help our daughter would give regardless of whether you were given a tax deduction, because of your love and generosity—which we truly appreciate. Making your donation tax-deductible is the least we can do to say “thank you” for your generosity. May God bless each of you in a special way for your generosity.
Links to Learn More about Dr. Minkoff and Angelina’s Condition
Below are some links to learn more about Dr. Minkoff and ME/CFS.
https://www.lifeworkswellnesscenter.com/chronic-fatigue/chronic-fatigue-syndrome-treatment.html
https://www.nih.gov/mecfs/about-mecfs
https://www.webmd.com/chronic-fatigue-syndrome/what-is-chronic-fatigue-syndrome