Friday, June 17, 2016

I Didn't Ask for This

Something most everyone going through floxing or a mystery illness seems to encounter is the idea that the individual suffering is doing it for attention, their symptoms aren't real or it's all in their heads. This response from doctors and medical professionals who can’t pinpoint the cause is hurtful to the person suffering. Many floxies go through numerous tests only to be told that everything came back normal/negative. At this point when doctors become stumped without a diagnostic tool to rely on they often resort to the “it’s all in your head” diagnosis. For one who is living this I can tell you it’s not in my head and fortunately I've never been told it is. We are living in a time when mystery illnesses are becoming more prevalent. The cause of my illness is a medication specifically a fluoroquinolone (FQ) antibiotic. I believe many mystery illnesses are caused by medications or interactions of a combination of medications as well as toxins such as pesticides, insecticides, and adjuvants/excipients in some vaccines and more.

I’ve also met many people whose family members have been helpful at first but when the sick person doesn’t get better over time that sometimes changes. Thinking that if they only got up and did something they’d be fine. If only it were that easy for the person who is ill. I can tell you that this attitude from friends and loved ones is one of the most difficult things to deal with. It’s bad enough when our doctors dismiss us but when it’s someone we love the pain of that betrayal cuts deep. Fortunately not all of us living with chronic illness encounter this. But unfortunately many do. And for those of us living this we recognize that it's very hard on our family members too. We don't want to be a burden to those we love. Trust when I say we are doing the best we can.

As one who has been living with chronic illness for almost a decade I can assure you that none of us want this. What we want is to have our health and energy back. Fluoroquinolones damage tendons, ligaments, soft tissue and collagen throughout the body and then there’s the musculoskeletal system damage. I might look fine on the outside but what you can’t see is that my ankles don’t flex for me to safely walk down stairs. My hands which look normal tend to be like claws when I try to pick up items and/or hold my utensils to cut up food to eat. My joints pop and click when I walk sometimes buckling and giving out altogether. And then there’s the nerve and nervous system damage… the pain and suffering from which I could write about all day and only begin to touch on the subject. A quicker explanation is that there are few systems in the body that aren’t affected by fluoroquinolone toxicity and yet I look normal. I’m still basically the same athletic build that I was before I took those toxic pills and I still look young for my age (thank you Mom and Dad for those wonderful genes!). That being said one simply cannot see what’s going on inside at the cellular level.

The FDA in a 2013 document admitted that fluoroquinolones can cause mitochondrial damage. No one can see by looking at me that my mitchondria which are the powerhouses of our cells are damaged. They can’t see that my DNA has been altered as FQs are designed to alter DNA of bacterial cells to cause death. And the question of how FQs differentiate between bacteria and healthy cells remains.

The point of this is that some things just can’t be seen by the naked eye and they don't show up on diagnostic tests. That doesn’t mean they aren’t real. It doesn’t mean the person experiencing them isn’t suffering. Their symptoms and health issues are very real. I can tell you that these people would much rather have their health and energy back. I know for certain I would. I’d love to be the strong supportive mother and wife that I once was. I wish I could take care of my husband and children, and run the household like I used to do. Even more than that I wish I could go skiing with family and friends in the winter, and swim and sail in the summer or even just have the ability to go for a walk around the block on a nice day. I didn’t ask for this and I haven’t met anyone or any floxie that did either. We trusted our doctors and fluoroquinolone toxicity was the result. We didn’t want this the same way no one wants cancer, lupus, MS or any other disease. Rather we are doing the best we can to live with strength and dignity with the hand we were dealt. We are trying to regain our health as best we can, and to learn to live with our new “normal”. All we ask for in return is to have those we know and love to understand, and to continue to be supportive of us. As Ellen DeGeneres would say; "Be kind to one another".

Yours in Health,


Tuesday, June 7, 2016

Pieces of a Puzzle

Trying to recover from floxing can be a difficult task to say the least. As victims of FQT we are on our own. There has not been any research done or peer reviewed studies on treatments and the medical community is at a loss as to how to treat us. We are unique among chronic illnesses in this regard. If you have cancer, heart disease or an auto immune disease or some other labeled illness you will have numerous research studies and treatment options available to you.  If you have FQAD/FQT or some other mystery illness you might have a support group to discuss options but none of these options have been studied by the medical profession. Even the rare doctors that recognize FQAD will admit they have no idea what to do to help us.

Hopefully that will change in the future but in the meantime I would like to give those newer to FQT some help navigating this syndrome. Since we all know about cycling of symptoms as its common to this toxicity and that our symptoms and side affects are numerous I’d like to tell you my approach. Trying to deal with so many health issues all at once can be overwhelming so I took a much simpler approach to try to heal my body. Like starting a new jigsaw puzzle and looking at a thousand random pieces can be daunting recovering from floxing can be too.

When I start a new puzzle I build the border first and then work on specific areas within the puzzle itself that I feel I can do. I use this same approach in dealing with FQT. I start by getting my border done first in other words I began by eating healthy and avoiding exposure to toxins. This is the foundation or border using the puzzle analogy. I recommend eating organic and non GMO as much as you can afford. As well as using organic or earth friendly toiletries, cleaners, detergents, and soaps. I’ve found very affordable options for shampoos, conditioners, deodorant, toothpastes and more. In doing this you reduce the toxic load on your body. I can’t stress enough how important eating nutrient dense foods is to give your body the nutrients it needs to heal itself and studies have shown that organic food is more nutrient dense than conventionally grown.

Next I worked on areas that were or are the most important health issues to me and occasionally a random piece of the puzzle would fall into place in the process. For instance I was struggling with hypoglycemia at one time so I ate a diet to control blood sugar levels. It took months but I did get my blood sugar stabilized. In the process of working on that I cut out sugar and had the added benefit of a reduction in nerve pain. As I got this under control I realized that my digestion was not functioning properly. I was eating more yet felt like I was starving for nutrients so I embarked on a diet to heal leaky gut. I’d been sugar, gluten, and processed food free but it wasn’t enough. I never thought my gut was that bad but embarking on the diet to heal my gut and following it without cheating for a full year helped considerably. I did heal my digestive issues and in the process I reduced my muscle pain, some of my muscle stiffness (tone form of spasticity) and muscle ratcheting (clonus form of spasticity) too. In tackling some of the bigger issues I was able to help some of the other issues I was dealing with as well. So like putting together a puzzle I worked away on different areas of my health towards healing.

I’m still working on completing the large puzzle that is floxing. FQT certainly is a puzzle for those of us going through it. The puzzle that makes up my issues has some sections that are more challenging than others but I still find it easier, more manageable and less overwhelming to tackle just a few areas at a time.

Yours in Health, Betsy 

Thursday, June 2, 2016

Reach Out

This is a tough topic to discuss and the most difficult post I’ve written however in light of the loss of another floxie recently I feel it needs to be addressed. I think all of us have felt hopeless at one point or another in dealing with FQAD/FQT. I know I have. I’ve felt the despair and unfortunately it’s another side affect of FQs. That said I’ve lived with FQAD for nine years now and I’m glad that I’m still here. Have I healed? Yes and no. Some things have improved or healed while others have not but I’m happy and enjoy life again.

I want anyone out there who’s considering throwing in the towel to please reconsider and know that you are not alone. Please reach out to someone whether it is a family member, a friend or someone in our support groups. The people in the support groups are some of the kindest most compassionate and caring people I’ve ever met and they know what you’re going through. I know what you’re going through too and I’m willing to listen if you need me. Please reach out to someone. A suggestion is to have a floxie buddy system in place. Find a few floxies in the group that you connect with so you can reach out to them when you need someone to lean on. You don’t have to fight this alone. People care about you and love you. Hang in there as it can and often does get better. I’ve seen it. I’ve seen some very sick people get better to the point where they are back functioning at jobs they love, they are out enjoying activities with family members or like me they are embracing new pursuits that accommodate their limitations.

Getting floxed isn’t easy but you don’t need to throw in the towel. I’m here to tell you that there is life after floxing. Life is a blessing. It’s not always easy but it can be enjoyable. Not all our problems can be fixed but they can be carried. If you’re struggling with a heavy load ask for help. You’ll be amazed at the outpouring of support you’ll receive.

Take my Hand, Betsy