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Lyme Disease Support Network

Newly diagnosed, lost and terrified


#1

Hi everyone! I am so glad to be a part of this network!

My story is long, but crazy. When I was about 5 years old I fell very ill and was hospitalized for Rocky Mountain Spotted Fever. By age 10, I was starting to have problems with extreme fatigue and swelling in my knees. By age 15, I had developed a heart condition that was diagnosed as PSVT (I think this diagnosis will change or we will add Lyme Carditis). By 18, I was suffering with severe joint pain, muscle pain, fatigue, carpal tunnel and bipolar disorder. At 25, I was diagnosed with fibromyalgia. It made some sense, but it still didn’t explain everything for me. So, I started researching and the answer was always Lyme Disease. Last week, at 33 years of age, I finally found a doctor willing to test me. They found I was positive and it was very active.

I just started my first antibiotic treatment. 28 days of amoxicillin. I am already feeling worse. It seems my chest pains and palpitations are much more frequent and I hurt so deeply. I have no insurance and no clue how we will pay for treatment. I know I am looking at a course of IV antibiotics and a whole lot more that I don’t even know about yet. I look forward to learning from all of you and thanks for listening!


#2

Welcome, your story is so sad. We all have been through so much. Could you get on some kind of Medicaide to help you with the cost of medicine? Unfortunately, the only way to get better is to be on some kind of drug therapy. Try to eat foods that increase you immune system. Also anti-inflammatory diet will help too. You can google that. Just trying to think of things you can do that involve lifestyle changes that will help your body help fight this horrible infection. Know that this is a great place to get emotional and helpful information. You’re not alone unfortunately. Will🙏🏼 for you. Try to find a Lyme Literate Doctor. Who really understands "Chronic or Post Lyme Syndome. Hang in there. I’ve had Lyme since 1993. I’m taking Bicillin injections once a week for now. [quote=“gypsyrose, post:1, topic:483, full:true”]
Hi everyone! I am so glad to be a part of this network!

My story is long, but crazy. When I was about 5 years old I fell very ill and was hospitalized for Rocky Mountain Spotted Fever. By age 10, I was starting to have problems with extreme fatigue and swelling in my knees. By age 15, I had developed a heart condition that was diagnosed as PSVT (I think this diagnosis will change or we will add Lyme Carditis). By 18, I was suffering with severe joint pain, muscle pain, fatigue, carpal tunnel and bipolar disorder. At 25, I was diagnosed with fibromyalgia. It made some sense, but it still didn’t explain everything for me. So, I started researching and the answer was always Lyme Disease. Last week, at 33 years of age, I finally found a doctor willing to test me. They found I was positive and it was very active.

I just started my first antibiotic treatment. 28 days of amoxicillin. I am already feeling worse. It seems my chest pains and palpitations are much more frequent and I hurt so deeply. I have no insurance and no clue how we will pay for treatment. I know I am looking at a course of IV antibiotics and a whole lot more that I don’t even know about yet. I look forward to learning from all of you and thanks for listening!
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#3

Thank you so much for the kind words and advice! I am an avid user of natural treatments and I am researching the diets and what changes I can make or supplements I can add. The problem with Medicaid is we make about $400/mo too much. We are broke, but not quite broke enough to get assistance. Insurance is turning me down (even Obama care isn’t going to cover). So, I fear my only options are to find foundations that will help and maybe open a go fund me page to help so I can at least get a little help.


#4

You are feeling worse because of the toxic release from the die off of the spirokete. it’s called a Herximer Reaction. You must be very careful to follow up antibiotics with an aggressive herbal regimen, dietary plan, and YOU MUST KILL THE SUGAR. Please, do that last. I received antibiotic infusions of rosephrin when they still didn’t know much about this disease 20 yrs ago and i have a rare chronic strain that nothing works on. You must also support your emotional health with supplements, I would recommend Sam-E. It’s expensive at first glance but you can find it for a good price if you look around. Good luck, and be aggressive, don’t stop at “i feel better” or it will never leave you.