UPDATE! (January 30th 2024)

Julia’s Lyme Disease Update and Support Letter

Dear Friends and Family,

I hope this letter is finds you healthy and well. I am writing to provide you with an update on my health journey since November. I have felt so blessed by you all. Your support has been instrumental in my progress, and I am grateful for each of you.

Update

Firstly, I want to express my heartfelt gratitude for the messages of encouragement you've sent my way. Your words have been so uplifting to my spirit during this challenging time of life. Additionally, I'm pleased to share that I have found housing that is not triggering my symptoms as much as other places which has been a step towards my healing journey. Your financial support has also enabled me to raise funds, both through your generous contributions and a grant from Sam's Spoons, totaling $4,800. I am beyond blessed by the ways this financial assistance has opened doors for me to consult with multiple doctors and initiate essential treatments.

I had planned to pursue treatment at The Chung Institute of Integrative Medicine in New Jersey. However, upon further developments, I realized it wasn't the best fit for my specific needs. Because of your financial support I was able to connect with new doctors who specialize in treating Lyme disease. But as you know from my previous letter, consults can be very expensive. One doctor charged me $675 just for an initial office visit. This was very discouraging as hidden fees were applied at time of payment. Had I known about these fees I would not have consulted with this specific doctor. In addition to expensive consults, high costs of certain therapies have also been a roadblock. Despite setbacks, I managed to find an alternative clinic that offers the necessary treatments at more affordable rates. I've also invested in medical equipment to facilitate daily treatments, including nebulizing therapies and contrast oxygen therapy. These investments not only provide me with essential support but also contribute to long-term cost savings. I have been working very hard to find the lowest costing course of treatment. 

Current Health and Symptoms

Encouraging Improvement

With regards to my current health status, there have been both encouraging advancements and ongoing challenges. On a positive note, I have observed improvements in various symptoms, including a reduction in neurological numbness and pain, decreased food sensitivities, and the gradual clearing of rashes. Previously I couldn’t exist without feeling pain and discomfort but the treatment I received so far has made the majority of my days tolerable which I am thankful for. These tangible improvements have been a source of great encouragement, affirming the efficacy of the treatments I have done so far.

Current Symptoms & Newest Setbacks 

Over the last few weeks, I’ve ramped up my treatment and started targeting Lyme and co-infections more directly. Unfortunately, it has become apparent that my heart is among the primary sites of infection. As I have been continuing treatment, the strain on my heart has led to the development of arrhythmias, which have been a source of significant concern. The severity of these arrhythmias has been alarming.

Medical assessments, including an EKG and phonocardiogram, confirmed that my heart is experiencing arterial fibrillation. What this makes me feel during a flare is constriction in my heart with by stabbing pain, heaviness in my chest and a heartbeat that is chaotic and irregular.

Upon receiving this diagnosis, one of my doctors responded candidly, expressing concern that typically a heart in this condition is associated with older individuals rather than someone of my age, highlighting the severity of the situation. He told me that it’s known that Lyme disease can affect the heart and lead to the various symptoms I’m experiencing such as arrythmias, tachycardia, subaortic stenosis, rheumatic carditis, and restrictive and hypertrophic cardiomyopathy. My medical team has seen this before and remain confident in their ability to address this complication. While we are monitoring my heart's response to treatment, I am reassured by my doctors that these symptoms indicate progress in targeting the underlying infection of Lyme. I have full confidence that my treatment is on the right path towards a full 

recovery.

Other than heart symptoms, I am also experiencing a deep aching pain within my bones and burning in the soles of my feet. Although it is not fun having the development of these symptoms it is indicating that I am stirring up the infections deep within my body. The infections I have attack red blood cells which we know blood cells are made in the bones. When the infections are being killed it causes my body to ache in my bones. I also still have flares where I have shortness of breath, nerve pain, twitching and muscle spasm, skin irritation and very bad brain fog and fatigue. Because of this, I am spending most of my day laying low and still as when I am up and going, I tend to get tired very quickly. 

Ongoing Needs

As I navigate my health journey, I am very aware of the ongoing need for support. Your prayers for patience, peace, and wisdom throughout this process mean so much to me. I am in need of ongoing financial support to sustain treatments. This remains a critical component of my healing journey. The monthly costs of treatments and therapies are substantial, and any assistance would be so appreciated. Listed below are specific needs I have as I’m entering into phase 2 of my treatment.  

Phase 2 Needs

Prayer: I have been handling the stress and continued roadblocks pretty well considering. The place I’m in on my journey is a place that feels never ending though. It is getting hard to continue the good things and the pursuit of treatment. I’m finding with Lyme disease you need to be advocating for yourself and seeking your own answers 85% of the time due to the lack of understanding within the medical system. This can be tiring, especially as I have been dealing with this for three years. Please be praying for me to continue to have peace and patience. And of course, please also pray for complete healing!

Treatment: Since Lyme treatment isn't covered by insurance, all expenses for treatment come directly out of pocket. As I have said before this care can be very expensive. Because of this, I am working hard to find the most cost-effective options available for treatment. I currently have a goal of raising $3,000 to be able to receive treatment over the next couple of months. Any funds raised will primarily go to the cost of monthly medicine, doctors’ appointments and IV treatments. 

I am doing everything I can on my end to find support and provision for treatment in addition to this fundraising. What this looks like is me pushing through pain fog and extreme fatigue to actively be finding and pursuing grants that specifically assist in covering Lyme treatment costs. It is very taxing on me to pull together all the information and documents that need to be submitted and even to write this update letter to you. Even though it is hard, I am pushing myself to do everything I can to continue to move forward. I so appreciate your support and I am going to keep working on my end too. 

If you would like to financially support me you can do so through the information listed below. 

Give A Hand QR Code/Link & Venmo QR Code

https://giveahand.com/fundraiser/julias-neurological-lyme-disease-mold-recovery-treatment

In Conclusion 

Overall, I find myself in a significantly better place physically, emotionally, and spiritually compared to where I was in the fall. That's a monumental victory for me. I'm learning to cherish the small victories and find encouragement in every little step forward. Despite the challenges I face, I hold onto a deep belief that things will improve. Although I don’t know how, I believe God is working to use this to catapult me into bigger things.

Thank you for taking time to read my update letter and for all the ways you’ve supported me!

With love and thankfulness,

Julia 

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November 2023 - First Update

Hi there, I hope this page finds you well and encouraged. My name is Julia and I started this fundraiser to share my story and seek your support for a cause that has deeply affected my life. After three years of debilitating pain and suffering I have finally figured out that I have been living with the severe effects of toxic mold environment as well as neurological Lyme disease. 

This has turned my world upside down leaving me struggling with a myriad of health challenges. After searching for answers since February 2021 it was not until August 2023 that I discovered my diagnosis. I have endured a relentless battle against the symptoms of Lyme and mold poisoning. The worst symptoms I experience are stabbing and burning nerve pain in my back that radiates up to my shoulder and down to my hip and leg. I also struggle with brain fog from inflammation in my brain. This looks like confusion, inability to process thoughts, short term memory loss and depression. I have a severe skin rash on both of my feet that is extremely painful and irritating. And most concerning is that as of late I am exhibiting facial paralysis and numbness. Although not an extensive list, I am also dealing with the following symptoms. 

• Neurological Symptoms: severe nerve pain, cognitive impairment, difficulty concentrating, confusion, dizziness, and extreme mood swings, depression, anxiety or panic attacks, irritability, obsessions and/or compulsions, attention and focus problems, antisocial behavior, brain fog, disorganization, getting lost, communication problems, processing difficulties
• Respiratory Problems: shortness of breath, bronchitis
• Fatigue: Chronic fatigue and lack of energy
• Allergic Reactions: extreme skin rashes, sneezing, runny or stuffy nose, and itchy or watery eyes, anaphylactic reactions
• Immune System Suppression: weaken immune system resulting in cycling illnesses
• Digestive Issues: irritated gastrointestinal tract, nausea, abdominal pain, extreme inflammation, and bloating
• Skin Problems: severe rashes and hives
• Aches and Pains: muscle and joint pain, generalized body aches, regular flu like symptoms
• Hormonal Imbalances: disrupted endocrine system and hormonal imbalances
• Long-term Health Implications: multiple chemical sensitivity (MCS) and chronic inflammatory response syndrome (CIRS)

Illnesses like this start out slow and then all of the sudden you turn around and look back and realize that you’re not the same person you used to be. Even though I could identify that I felt awful, it wasn’t until I was able to consult with a Lyme literate doctor this month that I realized how sick I really am. After I submitted my labs to the doctor I first consulted with, I immediately received a call from him asking if the results were current. He couldn’t believe that I was functioning as well as I am because of how bad my results were and how severe the sickness is that I am dealing with. When getting a second opinion, my doctor was telling me that she thinks I don’t fully understand how severe what I am dealing is. She told me that I have neurological Lyme and I need to think of it like a fire in my brain and nervous system. She said that I have brain inflammation and that some of her sickest patients have the infections that I have (and she even made it a purpose to make mention that she treats very sick people, including stage four cancer patients). 

My body has worked so hard to stay strong in the face of Lyme, its co-infections and mold. I am so thankful for my lifestyle and measures taken to assist my body in staying as healthy as it has over the years. Unfortunately, in the past few years, Lyme with the additional blows to my immune system from toxic mold and multiple severe viral infections wreaked havoc on my health and my body’s ability to fight infection. It was the perfect storm. Not surprisingly testing has confirmed that I have a very compromised and low functioning immune system and my body is succumbing to the detrimental effects of Lyme disease. 

Treatment for chronic Lyme disease is complex because it’s a multisystem disease. There are limited physicians that are trained and equipped to treat it which makes consults with these doctors expensive ($405 per hour) and treatment even more expensive (some clinics quoting at 10k-15k a month!). Due to the lack of awareness and understanding around Lyme disease within the medical field these successful treatments are not yet covered by insurance. This means treatment is an out-of-pocket expense and this is why I need your help. 

I am looking to receive treatment from Chung Institute of Integrative Medicine in New Jersey. My decision to pursue this clinic is based off the treatment and approach they offer. I have spent the last month researching Lyme treatment.  The people I know who have completely healed from Lyme disease and its co-infections have used all of these same treatments. Some of the therapies I will be receiving are ozone, laser therapy, and detoxification therapies (including the Klinghardt method for those who know it). On average, chronic Lyme patients who receive treatment at the Chung Institute see a 50% improvement in six visits. Within twelve visits patients typically see an 80% improvement. The number of treatments needed and specific therapies are determined patient by patient. The need for additional treatment will be reassessed after twelve treatments. 

Treating chronic neurological Lyme disease is a journey and will require consistency over a longer period of time. Because of this I will be sharing update letters in phases. Phase one will look like raising support for initial funds needed for treatment at the Chung Institute of Integrative Medicine. It is estimated that treatments will be over a six-month period. There is potential for additional need of funds for any supportive therapies or treatments that may be recommended to me to do during my treatment. I am also in need of mold free housing. I am finding that mitigating the exposure to toxic mold has proven very difficult. Lastly, I will need a vehicle to use to travel to and from treatment. 

Phase 1 Needs

Prayer: Wisdom, healing, provision. I am very mentally and emotionally drained. Please pray for a clear path to get help and patience through the waiting. Please pray that I will also physically have comfort from the pain. Symptoms have also been escalating to facial paralysis and numbness in addition to nausea and vomiting so please pray that I can start receiving treatment ASAP to stop that progression and start me in heading in the right direction.

Housing: Mold free housing. Due to my compromised state, I am in desperate need of healthy housing. If I am exposed to any levels of mold right now my body has a severe reaction. I will be receiving treatment on the east coast so that I can be closer to my family and a support system. Treatment will be in NJ so I am in need of mold free housing in PA/NJ area. 

Car: Funds for a rental or a cheap vehicle to get to and from treatment.

Treatment: The initial funds needed for treatment at the Chung Institute of Integrative Medicine is $7,300. This is estimated to cover twelve treatments that will span over an estimated six-month period. Treatment varies from patient to patient and additional therapies may be needed. Price breakdown below.

Chronic Lyme Initial Consultation (x1): $500

If other additional procedures are performed during appointment the charge will be extra.

Follow-Up Consult (x12): $200

If more than 2 problems are addressed or the follow-up problem requires additional time and testing, there may be an additional $50-$100 charge.

Follow-Up Treatments (x12): Estimated $150-$300

I will know more of a solid number as treatment starts and we are able to determine what works for my specific case.

Testing

Testing will vary depending on the needed diagnostics throughout treatment. Lyme testing alone the costs $1,200 if additional testing is needed.

I greatly appreciate you taking the time to read about my battle with my health over the past few years. Although I have a long and unclear road ahead of me until I am in full health, I am very thankful to finally know what it is causing me to be so sick. Support in any form (prayer, words of encouragement, financially) mean so much to me in my healing journey. If you are in a position to and feel led to support me financially, you can do so through this fundraiser I started with “Give a Hand”. Another option to give is through Venmo with the information to do so listed below.

I will be be giving updates as I progress into the next phase of treatment and healing and will be excited to keep you all in the loop.

The last three years have been the most challenging years so far in my life (and I didn’t think that was possible). If I’m being honest, they have been “like hell” and there were times where I wasn’t sure how I’d come through it. The trails I have endured in life and with my health have left me in a broken but beautiful place. In the face of the impossible, life situations that are heartbreaking, loss, agony, pain and suffering I am now faced with a testing of my faith. Either God is good or He’s not. Looking at what seems to be impossible I think of God’s promise to those who love Him. He WILL work all things for the good of those who love Him. Definitely a Romans 8 time of life. Although nothing makes sense right now and it’s painful, I am holding to my faith in God and I believe that in His timing God will bring so much good. Because of this I am hopeful and excited to see what the future holds. Thank you for your role in supporting me!

With love and thankfulness,

Julia Guarini