Help Clarence with his debilitating Lyme Disease

 

News from January 2022

Mom (me) moved to Maryland with Clarence to get him treatments asap! 

My two daughters Mathilde and Lucie (22 and 17years old) also need treatments, as well as my little one Dov, (3 years old)

The whole family has been split across different states to seek treatment it’s been so tough!

Lucie has minor symptoms but Mathilde is getting worse as days go by. 

Clarence had an IV and light therapy today 

He is going there every Thursday. It’s intense treatments and hard to watch. 

He doesn’t feel better yet.

It’s going to be a long journey /

I’ll update here 

—————

Update ⚠️

Thanks to this go fund me

I met a wonderful mom who has been through the same thing .

Long story short 

We found doctors (yes with a S) in Maryland 

Who can treat our children

Dr. V will treat all of us for Lyme

And his wife who is pediatrician 

Was able to diagnose baby Dov with congenital babesia (it’s Lyme), she is the ONLY dr in the USA who is willing to help a baby .(we found another one in Connecticut, but he refused to treat the kids over 18)

So Dr V and his wife are going to treat the ENTIRE family.

Clarence  flew here with dad as he couldn’t do the 13 hours drive from Florida. I drove with Mathilde and Dov, Lucie stayed in Florida with her dad to finish school prior to getting treatments. 

Unfortunately, it is not possible for us to travel weekly 

So we decided to move to Maryland to be closer to the clinic.

We just purchased a house about 8 min from the Dr.

Dov is already on herbal supplements 

Dr diagnosed him with gluten and dairy intolerance 

No other Dr thought about that

Lyme can seriously damage your guts .

Dr V is going to be Dov’s primary care Dr as she understands fully Lyme

My Story

Hi, my name is Clarence. I am 18 years old and since I was born, I have been in and out of hospitals. I have a very weak immune system and always get sick. 4 years ago, I began having excruciating headaches. Not the typical migraines that you can take a pain killer and move on with your day. My headaches are so strong that I throw up in pain until my body has nothing left to eject and I have to go to the hospital again to be under IV's. After countless blood works and test, I was finally given my diagnostic. I have Lyme Disease. Lyme Disease affects everyone differently. Some people live a lifetime asymptomatic. I am one of the unlucky ones that have the worst symptoms. My headaches make me so dizzy, I can barely see. These headaches never go away. Not for one minute. I feel like I am getting stabbed in the head 10 times all day everyday. No pain killers, or treatments worked. Nothing. I have tried everything. I am in bed everyday, all day, all night. I did not have a social life at all. I had to drop out of school, quit my job, and I lost all my friends. It was just me, my bed and my supporting family by my side for 3 years. My mother recently found a great doctor to help me but we cannot afford his treatment. I started some of them and since then, I am able to get out of the bed, but only at night because I am extremely sensitive to sunlight, the brightness and its heat. So I have to go out at night. I am starting to have friends again. I don't want this to end. I want to continue getting better. I want to go back to school I want to be a scientist someday. I want to work again to help my parents pay for my treatments. I am a fighter. My pains do not define me. 

Here is a list of my symptoms. Lyme Disease is more common that you would think.

- Extreme, excruciating headaches, 
- Weak stomach, I can barely eat. I am so skinny you can count my bones. 
-Joint pains.
- Knee clicking, neck cracking. (My neck bothers me A LOT! it hurts all of the time, it is always sore and so is my back. Everyday I feel pressure all over m body as if a truck is slowly running over me)
- Extreme Fatigue
- Nausea/Dizziness
-Sensitivity to heat and sun light
-Double vision. I can't see. I lose everything. I always have to cry for help from my family to find things around the house because I am nearly blind. 

- chronic pain and stiffness all over body

 

So, I’ve been affected with Lyme since birth and in 7th grade I remember starting to have a lot of neck and back pain and later on I woke up one day as a freshman in high school with a headache that has since been living with me that has evolved in dizziness over the years. Ever since, the pressure got tighter around my temples and I have heavy sensitivity to the heat where I can’t step foot outside if it’s too hot, and living in Florida, I can never be outside at day. I wasn’t able to lay on the back of my head when I slept or laid down since it made me too dizzy. I later on developed 45 symptoms in my lifespan. The symptoms all slowly yet, gradually changed my life. I remember having my first jaw pain freshman year of high school. My pains made me antisocial with all the kids and teachers. I wanted to do well in school but my headaches and my pains distracted me from studying, reading and doing well on assignments. I haven’t been wearing contacts or glasses now for over 2 years since it gives me overwhelming pain. I am thankful for the few friends who stood by me even when I dropped out of school. I was too sick to realize how sick I was going to be to the point where I had to completely take my classes online as a senior. I have been in and out of hospitals every week, I have done chelations and all type of needle procedures. From taking 9 tubes of blood at once to being poked on both arms for hours. I’ve done so much treatments in my past time I can’t keep count of all the procedures and all types of scans, MRIs, X-rays, spinal tap and things hospitals carry to examine people.  I had to wait and be patient and try to live everyday staying positive. It took years until I met the doctor that can save me. I’ve been on medications for about a year ago for Lyme and it’ll take years possibly for me to completely heal but I’ll always have my family and friends that’ll stick with us until I beat this.

Thank you for taking your time to read. If you are having my symptoms, or any other chronic illness symptoms please look into Lyme Disease. 

 

 

 

 

The title of this fundraiser is “Clarence is fighting Lyme”

as you know Clarence has been in pain 24/7 since 2018

we also recently found out , that Everybody has Lyme , (borrelia , babesia and bartonella) we all need a treatment

by everyone, I mean everyone

Mom

Mathilde

Clarence

Lucie

baby Dov

 

Clarence is the most  affected, and needs more consultations and meds than us.

each Dr consult is $1200, meds cost about $9000 a month.

and I’m not mentioning (chelations , ebo2) blood work from European labs (that are never covered ) we have spend close to $100.000 so far.

Our only option is to sell our home .

 

I have never asked anybody for anything.

I am working more than full time , but it’s not enough.

Any donations is highly appreciated. 

Thank you,

especially Clarence who lives with chronic pain 24/7.

 

Ps: we do have insurances

Kids had Medicaid

We tried a total of 7 insurances

Most meds are not FDA approved and cost more than $10.000 a month 

 

https://beta.ctvnews.ca/national/health/2019/1/20/1_4261403.html