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Vijay's Lyme Fund: Together we can do it!

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Vijay's Lyme Fund

Hello lovely people,  

I am Marta and I have urgently set up this page to raise funds for my dear friend Vijay as he is suffering from Lyme disease. I did not realise how seriously Lyme has been affecting him as I was sceptical about it until he started to tell me his struggles. We first met at a creative event in Brixton in 2013 and we instantly became friends. Health and nutrition have always been a top priority for both of us. We always conversate about improving our individual health and becoming the best versions of ourselves. In the past we have attended yoga classes, cooked healthy meals together and discussed well-being on a regular basis  but that all changed when he seriously got ill from food poisoning. I don’t like to see anyone suffer and I’m sure you would do your best to help a loved one who is chronically ill. It is heart breaking seeing your loved ones suffering and being unable enjoy the simple everyday life. 

The aim is to raise £6000 for the treatment he needs to go through asap and additional £1500 for any additional cost that may occur unexpectedly during his treatments. 

We can do this together, yes we can!!! Let's do this lovely people and put a smile on his face :) 

(Above: Photo of when Vijay and I first met at a creative event back in 2013)

Please read the following text that has been written by Vijay with the help of his brother and friends so you have more understanding of what is really happening with Vijay. 

Who am I?
Hi everyone. I’m Vijay. Before I continue, I would like to share my intentions with you. I am not writing the following for sympathy. I am looking for understanding and empathy but also raise awareness so that others don’t struggle as much as I have. I have been judged harshly for telling people my truth, so it has been very challenging to share this with you all.

I’m 32 years old and live in Watford with my parents and brother. I have been unemployed for over 2 years due to ill health and have faced discrimination due to it. I have been unwell for over 4 years now and it has robbed me of my life.

For a long time, I didn’t know what was happening. I researched endlessly and attached to every possible label the medical professionals gave me. First it was IBD, then CFS, then Fibromyalgia then Arthritis and so on. But recently I have come to a place of acceptance, being diagnosed with Lyme Disease also known as Borreliosis.

(Above: Books and DVDs I have accumulated from my personal research)

Even though my friends tell me ‘mate you look like a million bucks’ and I appear well on the outside, internally, multiple systems are affected, and I know how sick I feel. I have an invisible disability that fluctuates daily which means I am not a reliable person anymore. My friends would tell you that prior to becoming ill, I have been a man of my word that people could depend on.

Who was I prior to becoming ill?

Prior to becoming ill, I was a passionate artist and used to work in several fields helping others. Now I barely have energy to focus on my art. I would say without arrogance I have often been there for others offering support, but I have found it hard to ask for help. Currently I have no alternative, so I have a new challenge to depend on others. My brother has been my crutch and my parents have been worrying a lot due to a lack of understanding about Lyme.

(Above: Me doing what I love best in 2013 at The Brick Lane Gallery)

How did it all start?
My Lyme disease was triggered by food poisoning in February 2015. Specifically, Shigella which admitted me into hospital. 16 hours on a drip in a side room was not where I was looking to end up in my quest to helping others whilst working in a school.

(Above: Me on the right. This was the photo of me closest to the time when I initially got sick)

After this I developed post-infectious Irritable Bowel Syndrome (IBS) followed by several deficiencies. I kept getting gut infections, one of which landed me again into hospital in May 2016. I developed a food anxiety due to my initial poisoning, so I was practically eating air at one point. Social situations related to food were horrendous.

Then the fatigue crept in and I developed M.E/Chronic Fatigue Syndrome (ME/CFS). This is known to be an illness in its own right, but also a symptom of Lyme Disease. The fatigue was so bad at one point I had to crawl on the floor to get to the bathroom. Simple tasks exhausted me. I couldn’t walk down the road and most days were spent laying down. Due to this my body deconditioned.

The next stage of the symptomatic picture was extreme pain in the form of Fibromyalgia. Whether I sat, lay down or stood up, nothing alleviated the pain. I was on high doses of muscle and nerve relaxants, antidepressants (prescribed for IBS, not any psychological condition) and buprenorphine patches that turned me into a living zombie.

Only when I thought it couldn’t get worse, I found out I had parasites. I couldn’t gain weight, no matter how much I ate. This led me to a private nutritionist who urged me to have a full GI MAP. The results detected high amounts of Protozoa, specifically Pentatrichomonas Hominis. She treated me with herbs and supplements such as Black Walnut and Wormwood to overcome this.

More recently due to a relapse, my symptoms have further evolved. I have become more forgetful and disorientated often forgetting what I was talking about and not knowing where I am. This has come alongside feeling anxious and depressed. This is a by-product to the biological infection which is the primary cause. I want you to note that although the bacteria called borrelia impact mental function, Lyme Disease is not solely a psychological disease.

What are my symptoms?
My symptoms vary daily. I have experienced flu like symptoms, fevers, chills, sweating, headaches, migraines, stiffness, muscle and joint pain, cognitive disfunction, disorientation, mood issues, sleep problems, fatigue, floaters, light sensitivity, tingling, numbness, vertigo and much more over the past few years.

What is Lyme Disease?
Lyme Disease is known as the ‘great imitator’ because it resembles MS, Parkinson's, Alzheimer's, Arthritis, M.E, Fibromyalgia and many more diseases. It is complex in nature, but simply put, it is a bacterial infection caused by Borrelia. These are a type of bacteria called spirochetes which are corkscrew shaped worms that hide all over the body e.g. in the immune system. They are parasitic in nature and live off their host feeding off collagen and bodily tissue.

How is it transmitted? 
Traditionally it is believed that Lyme disease is acquired through a tick bite. The tick awaits on a strand of grass then latches on to its host. Once it bites and burrows into the skin it feeds off the hosts blood. During this interaction it passes on the spirochetes along with viruses and co-infections to its host. Transmission of borrelia is not limited to tick bites but also other arthropods like mosquitoes. Stephen Buhner, a well-known herbalist discusses transmission in his book ‘Healing Lyme’. He states Lyme Disease can also be passed from mother to child through the placenta and transmitted sexually through bodily fluids. I am is not sure exactly how I contracted the disease although I have my speculations.

How am I affected? 
According to Buhner, there are several stages to Lyme disease, Acute, Chronic and Late. I have Chronic Lyme Disease. The borrelia attack different parts of the body which create different combinations of symptoms. When they attack the heart, it is called Lyme Carditis. When they attack the joints its Lyme Arthritis and so on. When it is the nerves, it is Neuroborreliosis which unfortunately I have. My symptoms are indicative of this.

What are the statistics and is there a cure? 
I am one of a growing number of people affected by Lyme disease worldwide. The recent UK news backs my statement about the increase of Lyme. From my research, currently there is no cure, but treatment can ease my symptoms. 
 
How does Testing work? 
A 5-tier testing process would be ideal to give a clearer diagnosis. But as accurate testing technology has not been developed yet, I have relied on 2-tier testing and the diagnosis from a doctor who is experienced in dealing with Lyme disease. I have had a Western blot with Immunosciences Lab in Los Angeles and an EliSpot (or ELISA) with Armin Labs in Germany. The combined results indicate the Borrelia and its coinfections.

(Above: Official results from Armin Labs in Germany)

I also have had the following tests conducted:
·         an immunology profile
·         haematology and biochemistry with electrolytes
·         a zonulin protein profile 
·         a comprehensive viral panel
·         a comprehensive stool analysis
·         a lymphocyte sensitivity test
·         a mycotoxins test
 
Did the NHS help? 
I have learnt a lot through my experiences and by meeting some reassuring doctors in my time dealing with the NHS. I have been through conventional western medicine and the public NHS system attending every referral at several hospitals to no avail. I have had ample tests through a process of elimination to end at an inconclusive result. I have attended other private organisations which have benefited me but not to the point of a cure. I have also experimented with beneficial alternative therapies such as holistic health, nutrition and researching when possible.

Where am I at now?
Through my quest in healing I have now arrived at Breakspear Medical in Hemel Hempstead. This is the only renowned centre for treating Lyme Disease in the UK to my knowledge. Treatment is expensive because on a mass scale money is not being put into researching or treating Lyme Disease. My family and I have spent thousands of pounds in attempting to heal me. With regards to Breakspear we have spent over £4000 so far but this is not enough. The testing is ongoing, and I have commenced treatment.

What treatment is available? 
The bacteria have weakened my immune system and so I have been affected by a plethora of bacteria, viruses and allergies. I require funding for the following areas of treatment:

The Lyme infection: I need to follow a 4-week Lyme treatment protocol which includes an initial consultation, haematology and biochemistry, antibiotic injections, medications, biofilm breakers, probiotics and follow up consultations. Antibiotics need to be administered to break the biofilms. These are ‘cities’ the borrelia create. I may have Herxheimer reactions. This occurs when the bacteria die off and release toxins into the body creating painful symptoms. Iratherm whole body hyperthermia treatment followed by Vitamin C infusions will also help with this process. I will need to follow a long-term herbal protocol to manage my Lyme infection as it can resurface.

Coinfections: These are other opportunistic pathogenic infections i.e. bacteria and parasites that come along with the borrelia. Babesia, Ehrlichia and Bartonella are some of the common ones which need to be treated with herbs also. I have Ehrlichia and Bartonella.



(Above: Estimates for the 4-week Lyme treatment protocol)

Viruses: Epstein Barr is one of the viruses affecting me. I am being administered antiviral supplements for this.

Multiple chemical sensitivity (MCS): This develops alongside Lyme. I am chemically sensitive and have eliminated many domestic products but have further to change with regards to this issue.

Electromagnetic sensitivity (EMS): I am sensitive to electromagnetic fields such as WIFI. I am trying to adapt my environment to this. Due to the technological age we live in, I find this very challenging.

Allergy testing: I have severe hay fever, gluten and dairy intolerance. Haematology results at Breakspear revealed that I had a fructose intolerance which was reducing the performance of my mitochondria in producing energy. From my initial week of Low Dose Immunotherapy (LDI) allergy testing I found that I am sensitive to mould, mites, weeds, pollen and dust. There is excessive mould in our house. This affects me through struggling to breathe, rhinitis, sore throat, brain fog and fatigue. It will cost my family a lot to ventilate, remediate and renovate our house. A specially prepared vaccine cocktail is helping me build my immunity to these allergens. I need 2 more weeks of LDI followed by 12 weeks of vaccine injections and retesting every 3 months.

(Above: Estimate for Low Dose Immunotherapy allergy testing)

Breakdown of funding needed: (Please refer to photos of the estimates for full details)
Below you can see the costs that I currently need for my treatment funding. My needs could change in the unforeseeable future due to the fluctuating nature of my illness. Therefore, I would like to raise more than my fundraising target to cover all the costs I may have.

4-week Lyme treatment protocol which includes:
An initial consultation = £110
Haematology and biochemistry = £61
Antibiotic injections and  8 x £25 = £200
Lignocaine  8 x £4 = £32
Medications = £96
Biofilm breakers  £27.08 + £22.98 = £50.06
Probiotics £31.20 + £31.65 = £62.85
Follow up consultations = £120 each
Long-term herbal protocol to manage my Lyme infection= Uknown?
Total= £754.50 Upwards

Iratherm whole body hyperthermia treatment with oxygen which includes:
1-2 sessions per week  6 x £125 = £750
Followed by Vitamin C infusions  6 x £148 = £888
Total= £1638 Upwards

At least 2 weeks of Low Dose Immunotherapy (LDI) allergy testing including: 
Initial consultation = £110
4 x full days of allergy testing  £250 x 4 = £1000
Individual titration = £6
Vaccine £25 x £4.50 = £112.50
Syringe £200 x £0.23 = £46
Safe clip device = £3

Followed by 12 weeks of vaccine injections and retesting every 3 months including:
Half day allergy testing = £125
Individual titration = £6
Vaccine £25 x £4.50 = £112.50
Syringe  £100 x £0.23 = £23

Total for 1 week and retesting = £1544.60 Upwards
Total for 2 weeks and retesting = £1544.60 x 2 = £3089.20 Upwards

Grand Total = £754.50 + £1638 + £3089.20 = £5481.70 Upwards

 
Overall Vijay has the odds against him on his journey to healing, but we are hopeful, and I know he will never give up. He used to be the first person to offer help to someone in need, but now he needs the help. With the collective support of community, I believe Vijay can improve. He has struggled to get this far, so I ask you for your help in raising the funds to continue his treatment. We will highly appreciate all the support you can offer towards Vijay’s treatment. Every little help will be very much appreciated. 


Warm regards,

Marta, Vijay and friends.

(Above: My box of vaccines, medicines and supplements)
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Donations 

  • Ravi Panchal
    • £50 
    • 4 yrs
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Organizer

Marta Czarnecka
Organizer
England

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