This is a popular post from years gone by that ties in perfectly with Lyme Awareness Month. The post has been added to over time and will no doubt repeat some things. Try to look at it as segments. Just like the span or segment between the last entry and this one.
An update on my Hypogammaglobilnemia, which is an Immune Deficiency Disorder, it has progressed and I now require Plasma Infusion treatments. As usual, insurance is giving me a hard time because they are very expensive, and have already denied the request from my doctor twice. I’m building my case to write my letter of appeal.
I diagnosed my Lyme after a year with a Neurologist and no answers. I kept taking keywords from her test and adding them together and came up with Lyme. It was good luck on my part! Some people take years to find out they have Lyme Disease.
I can not emphasize enough the financial burden of Lyme Disease. We spent close to $150,000 dollars over an 18 month period. My Infusion treatments were $6,000-$10,000 per month not including prescriptions. Insurance did cover prescriptions but none of the treatments or the mass of supplements I had to take. We had to take out a home loan to pay for all the treatments, that’s how serious this Lyme Disease is.
We also traveled to Washington, D.C. once a month to see my doctor which costs airfare, hotel, meals, and pet sitting. Not to mention all the time my husband missed work.
It’s important to understand all the years later the CDC still does not recognize long-term Lyme which means insurance will only cover 4-6 weeks of antibiotic treatment. Then you are on your own.
May 20, 2021
For many people around the world, it’s still hot outside and you’re enjoying outdoor activities. I am reposting this as a reminder of how serious Lyme Disease is, it will change your life forever if not diagnosed in the first 2-4 weeks. Around 30% of people do not get the bullseye rash and you have no way to know you have been bitten by a tick. We are talking about ticks smaller than a grain of rice! Think about how hard they are to find in your hair. I’ve been ill since 2012 and was diagnosed shortly after as having Lyme disease, it’s been a long hard road.
I’ve recently been diagnosed with Hypogammaglobulinemia which is an autoimmune disorder of the blood. If severe enough Plasma Infusion Therapy is required.
Here’s what Wiki had to say:
Hypogammaglobulinemia is a problem with the immune system in which not enough gamma globulins are produced in the blood (thus hypo- + gamma + globulin + -emia). This results in a lower antibody count, which impairs the immune system, increasing the risk of infection.
I’ve never wanted a blood transfusion in the past and a lucky one was never required. I don’t know how I feel about plasma, there isn’t really an option. Your body must have white blood cells to fight off every type of infection including the common cold.
I saw a Hematologist who thankfully told me I don’t have bone marrow cancer and referred me to an Immunologist. I had a Telehealth appointment with the Immunologist only to find out he no longer does Infusion Therapy and has to refer me to another Immunologist. Be sure you ask if the Immunologist you’re referred to does the Infusion Therapy before your appointment in case it’s needed.
He went ahead and ordered blood work for which I had to go to the lab during this crazy time. A lab with sick people is the last place I wanted to be. They were working by appointment and only allowing four people in the waiting room which made me feel better.
The feeling of comfort went away when the person in front of me didn’t have on a mask and was not offered one, worst the lady behind the desk was wearing her mask on her chin and coughed. What the Hell! Now two weeks later I find out my lab work is lost.
Next week I start over. It’s calling the doctor’s office, asking for the referral, and letting them know there isn’t a need for blood work since he doesn’t provide the needed therapy.
Can I say for sure this new autoimmune disorder is tied to Lyme? No, but I can’t forget the words of my doctor when I was first diagnosed, Lyme will cause other autoimmune disorders and illnesses. My change is health is proof of what he said is true.
PLEASE take Lyme Diseases serious. I can’t stress enough how important prevention is, use 20% DEET in your spray or sunscreen, and checking for ticks is a critical part of prevention.
Update February 27, 2020
Warm weather is right around the corner, I know some of us are experiencing freezing weather but Spring is around the corner. The south will start to feel great outdoor weather in a matter of weeks. Lyme has left made my life hell, I don’t want you or anyone you love to go thru the same painful illness.
Please remember!!!!! There is no cure for Lyme and the diseases you get from your immune system being compromised can be life-threatening. As you go for the first hike, long walk with the dog, picnic with the kids, make sure you prepare for ticks. You don’t have to see cows or be anywhere near cows. A silly notion. The only sure way to prevent the ticks don’t stick to you is 20% DEET.
I didn’t want to use DEET in the past, and that was just to ward off flying bugs. DEET is the only recommenced prevention for tick-borne illnesses. Please educate yourself before blowing off the idea. The option is not worth the small risk of using DEET.
I will continue to send out a reminder as we move into warmer weather. I also plan to post an update on my health progress from living with Lyme.
As the temperatures warm the chances of encountering ticks increase. I had a PA recently say we don’t have Lyme in Texas, what? Yes, Lyme or tick-boring illnesses are in every state. Some states have a higher percentage of cases but don’t fool yourself, tick-borne illnesses are in every state in the United States. There are now 30 strains of tick-borne illnesses and more are discovered each year. This year a more deadly tick-borne illness, Powassan Disease was discovered and it’s the most deadly. Please take notice and protect yourself and your children.
This post is a combination of photos, snippets from the previous posts, and new information. If you have questions visit ILADS website for the most accurate information on tick-borne illnesses. This association is for doctors who treat Lyme, educators of Lyme, and the medical community who are there to increase knowledge.
I am walking after four years spent in bed, how could anything be worse than Lyme Disease? The illnesses Lyme leaves behind are debilitating and worst. I’ve lost four years of my life, screaming in pain, narcotics, nine months of twice a day IV Antibiotic Infusion Treatments. I can not stress enough how dangerous Tick-Borne illnesses are, they can kill you and your children. If you already have a compromised immune system, your starting behind the curve. I’ve talked to many at WordPress with Chronic Lyme, many of them spent 10-15 years before diagnosis. Think of the pain and isolation our fellow Bloggers went thru.
People have said we don’t have ticks, for one Lyme and Powassan Disease is transmitted by many sources other than ticks, mosquitos, sand flies, which are just a few culprits. In the wild animals of all types of animals die, many pests visit the buffet. The critter who is carrying Lyme disease bites you and there is a short window for medical attention.
The flying pest target is blood, they have to eat. They don’t discriminate on where they go for lunch. The ticks who carry Tick-Borne illnesses are smaller than a grain of rice, try to find that while doing a tick check, you will not see them.
Before you get dressed, spray sunscreen with insect repellant with 20% DEET. Reply every hour if sweating or in heavily wooded areas. Wear white socks with your pant leg tucked in light-colored pants. Wear a white or light-colored shirt, a hat that is longer in the back to cover your neck. Be vigilant with your kids, if playing outside, spray. Better safe than sorry.
Most important, do tick checks on you and the kids throughout the day. Take some tape and if you see a tick don’t touch it, pull it off with tape. While out hiking wear light colors, tuck pants in socks, wear a hat that covers the back of the neck. Lyme Dieses is not sexy.
Watch these extremely important videos and educate yourself. Know the early signs and a short antibiotic treatment may provide a cure. The bulls-eye rash talked about by doctors only happens 30% of the time.
The Lyme test doctors use only covers a few of the 30 strains of Lyme. I’ve had multiple tests over the past four years and not once did I show positive for Lyme.
Chronic Lyme disease causes other chronic illnesses in its wake and new illnesses can pop up at any time. I now suffer from Fibromyalgia, Dementia, Neuropathy, loss of balance, and other cognitive issues. My life is not back to normal and never will.
Lyme Disease is a serious illness and one that will last a lifetime. The best way to avoid getting Lyme is to take a few simple precautions and don’t forget to check your pets.
I’m left with a degrading memory since I have early onset Dementia caused by the Lyme spirochetes going to my brain. It’s not reversible nor is there a cure for Dementia. I can’t think of a worse way to pass each year, with less memory and fewer memories.