So I now have suspected lyme disease. Very slim chance I don't considering the bullseye rash and my progressing symptoms and debilitating weakness. This weakness/fatigue is outrageous. I thought MG and POTS were bad. Goodness this is so much worse even. I very much hope it gets better the more meds I get in me to treat this. But I'm concerned because I'm not being treated properly. I'm not being treated properly because my doctor doesn't get it.
My doctor claimed there have been no cases of lyme in IL in the past 12 years. I've already talked to 4 people in the past 24 hours who have had lyme in IL. My doctor ran the blood test yesterday. Do any research and you will find that test is highly unlikely to come back positive, but I could still most definitely have lyme. My doctor claimed 2 weeks on this med would work. Do any research and find I need a higher dosage for at least 6 weeks to even have a chance of this not turning into chronic lyme disease.
Chronic lyme disease would mean this extreme fatigue doesn't go away for good. Fatigue as in I'm not sure if I can sit up from bed in the morning. Once I have enough energy and make it downstairs, I'm not sure if I can finish getting my simple breakfast. A few steps and I feel like I have the worst case of mono. The stiffness doesn't go away. The muscle weakness and pain doesn't go away. The joint pain and weakness doesn't go away. The chills and fever return again and again. The stomach like flu symptoms come back. It can turn worse. It can add additional more serious symptoms, neurological, vision impairment, heart trouble, etc. It can kill you.
I say this because I speak the truth, I always speak the truth. And I feel it is so incredibly important to do so and to get awareness out there. Where do you get your information from? The regular MD's? The media? Friends or family who are healthy for the most part or have a common/known about health condition? Please think outside the box.
The medical industry is big on treating cancer, treating heart disease, treating COPD, treating diabetes. The medical industry fails on successfully treating or even acknowledging syndromes or diseases that don't show up on tests, that have to do with the autoimmune system, that treatment doesn't succeed on, that there is no clear live or die. They think they know more and sometimes they do. But sometimes they really don't. We are the ones living this every second of every day. We are the ones focusing in one on or a few specific diseases/conditions, talking to others who have it, learning what our individual bodies respond to and don't respond to. They read what is in a medical book based off of testing on a small percentage of patients who have something. We live it.
We with some chronic illnesses fall into a hole. We fall deep into this hole that doctors don't care about for the most part. Other than the medical industry being a money making industry, I don't know the true reason why we aren't treated. But I do believe the majority of regular doctors don't fully understand or acknowledge chronic illness such as the ones I have. That is sooo very hard for us. It is so stressful. Stressful to have to be told it's just anxiety, stressful to be told it can't be this or that, stressful to be told its not a positive blood test so there is no way you have it, stressful to not be treated or treated properly, stressful to be dismissed, brushed off or dropped as a patient, stressful to be judged and harshly criticized, stressful for no one to believe you, and stressful to deal with being jailed inside your own body each and every day.
Family and friends please get behind us and support us if you haven't already. Please don't question what we are going through or argue us on it. Please don't believe a doctor or another friend but not believe us, especially if you haven't done the research. We have it hard enough. More than anything we need support.
Myasthenia Gravis is a real disabling disease.
POTS/dysautonomia is a real disabling condition.
Candida is a real disabling illness.
Chronic Epstein Barr Virus is a real disabling illness.
Adrenal Fatigue/Insufficiency is a real disabling condition.
Lyme Disease and/or Chronic Lyme Disease are real disabling diseases.
I have all of them. And then I have the stress of people not believing me. I'm doing everything I can to improve or maintain my quality of life, to spread awareness and to stay positive. So if you want to disagree, please first do the amount of extensive research I have done, take a test drive in my body, and then tell me your argument. But better yet, just believe me and provide the support I need. I really do need it. I need you. Thank you.
Side note, the MG Walk Fundraiser is this month. Please consider making a donation. Funds go towards helping MG patients such as myself, with better treatments, improving quality of life and searching for a cure. Your support is much appreciated by myself and everyone with MG!
God bless.
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