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Living with Lyme | Patients say it's real after being misdiagnosed for years

"I didn't know what was wrong with me all I know I was getting worse and worse."

Vivien Leigh (NEWS CENTER Maine)

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Published: 5/8/2018 5:22:25 PM
Updated: 8:08 PM EDT May 10, 2018

SCARBOROUGH (NEWS CENTER Maine) -- Imagine living with a disease that causes serious health problems but not knowing that you are infected?

Many patients spend years misdiagnosed only to find out that they have Lyme Disease.

The disease is a debilitating illness that is spread through tick bites. For most people, if Lyme disease is caught early, it's treatable with antibiotics.

But left untreated it can cause long-term medical problems. Paula Jackson Jones and Angele Rice suffered from debilitating health problems -- they say nearly cost them their lives.

Thanks to health providers willing to work outside federal medical guidelines, they got their lives back. Now they are helping other patients from falling through the cracks.

Paula Jackson Jones found a tick on her after raking leaves on a beautiful fall day.

She flushed it down the toilet. A week later she started to have anxiety attacks. She didn't get the typical symptoms of Lyme disease -- a bull's eye rash and the flu.

She went to her doctor not thinking it had anything it had anything to do with the tick bite.

Her symptoms got worse full blown anxiety attacks, pain, muscle spasms and fatigue.

Six months later she told her doctor about the tick bite, but a test for Lyme disease came back negative. Most providers use a two-step blood test recommended by the CDC. It checks for evidence of antibodies against Lyme disease bacteria. If the first step is negative, further testing is recommended. But some experts say the test is unreliable -- failing up to 36 percent of the time even within 30 days of a tick bite.

'I had been diagnosed with MS I was shaking, none of this treatments worked. Now my arms and legs are not working. I am choking when I am swallowing I am hearing ALS,' said Paula.

Two years later after seeing 23 different doctors and four negative tests for Lyme --- Jones found what she calls a 'Lyme literate' provider. A naturopathic doctor willing to treat her symptoms without a positive test for Lyme.

'I credit her for saving my life because if someone didn't figure out what was wrong with me, I was going to survive this,' said Paula. A long-term dose of antibiotics, herbal remedies, and other alternative treatments helped her regain her health. Out of pocket testing confirmed that she had late-stage neurological Lyme and several other tick-borne diseases. Five years after that tick bite she met Angele Rice Angele was bitten by a tick at the age of 13 but didn't get a diagnosed with Lyme until she was 30. For years, Rice lived with migraines, anxiety, and depression, but like Jones, found a doctor willing to treat her symptoms. Together they started Midcoast Lyme Disease Support and Education. The nonprofit holds support groups, provides education to prevent Lyme disease, and connects patients to providers who practice outside CDC guidelines.

One of those providers is Dr. Jill Mahoney. The family doctor gave up her practice and focuses full time on patients suffering from Lyme.

She says how to treat Lyme Disease is controversial. The CDC does recognize Lyme as a medical condition but does not recommend more than four weeks of antibiotics for treatment. Other organizations feel that longer antibiotic treatment may be necessary. Dr. Mahoney follows recommendations from ILADS (International Lyme and Associated Disease Society) which the organization claims is backed up by medical research.

'Lyme is a persistent infection and finds ways to evade the immune system and often requires a longer course of antibiotics,' said Dr. Mahoney.

Dr. Mahoney also treats symptoms of Lyme and other tick-borne diseases with herbal remedies and diet restrictions. When their immune systems recover, some patients end up with a positive test for Lyme and on the road to recovery.

'People think we are just throwing things at them, throwing antibiotics at them, throwing herbals at them, giving them false hope. I wouldn’t be doing this if my patients weren't getting better,' said Dr. Mahoney.

The CDC does recommend patients who are experiencing symptoms of Lyme Disease post-treatment to get a second opinion. The CDC says studies by the National Institutes for Health have not shown that patients with Lyme Disease who received antibiotics over a period of time do better in the long run.

For information about Lyme Disease, Diagnosis and Treatment https://www.cdc.gov

Keyword Lyme

Maine Medical Center Research Institute www.ticksinmaine.com

Information on finding a provider to treat late-stage Lyme disease. Midcoast Lyme Disease Support & Education, www.mldse.org

International Lyme & Associated Diseases Society, www.ilads.org

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