You may have been tested for the Lyme disease before finally diagnosing fibromyalgia if your doctor did your job thoroughly. You were probably given a negative test result and thought that you excluded Lyme from your symptoms as a possible cause.
But probably you ‘re mistaken.
You can get a negative Lyme test result and still suffer from Lyme disease. The standard testing used by most doctors – the ELISA and Western blot tests – is just around 50-60% accurate for many people. This is a coin toss equivalent!
Fibromyalgia in early 2014 was diagnosed to me. During it, at least double the standard testing was used to screen I for Lyme. Both tests returned negatively. I finally looked for more advanced testing and last spring I was diagnosed with Lyme disease.
I have interviewed numerous doctors and patients since then about the connection between fibromyalgia and TBI, like Lyme, and I have come to an awkward conclusion: I suspect millions of people who are diagnosed with FB have TBIs, and do not know it. I have a lot of people who have fibromyalgia.
For this there are a number of reasons. The symptoms of fibromyalgia and TBI are overlapped enormously, increasing the odds for error. Secondly, the tests are, as I just said, extremely inaccurate and produce a high rate of false negatives. And third, many believe that TBIs are found only in the northeast region and in the United States Great Lakes region.
Since symptoms can vary by person, TBIs can last for years without detection. Extreme tiredness, joint and muscle pain, brain fog, stomach or pinion (especially in the extremities), neurological problems, anxiety / depression, digestive and vision and hearing disorders are the most common symptoms. Are you familiar with any of those? They should be the traditional symptoms of fibromyalgia. They should.
You can easily understand how Lyme and fibromyalgia can be confused to each other by looking at a list of Lyme symptoms. Lyme was called the ‘big imitator,’ as it echoes so many additional conditions, including fibromyalgia, chronic tiredness syndrome, multiple sclerosis, Alzheimer’s disease, and so on.
In 2016, singer and songwriter Kris Kristofferson made national headlines when he disclosed that he was suffering from Lyme disease. Fibromyalgia and Alzheimer’s was previously diagnosed and his health had been deteriorated to the degree that he was disabled. He could perform again on stage after being treated for Lyme.
Other famous people, including Daryl Hall in the Hall & Oates pop group and singers Avril Lavigne and Debbie Gibson, have shared their Lyme disease travels in recent years.
Testing and Cases
If you suspect that you were exposed to TBIs, then it is good that Dr. Richard Horowitz’s Lyme questionnaire is being completed as a start to research. Dr. Horowitz is one of America’s leading Lyme specialists. His survey will help you measure your risk for Lyme and other TBIs.
Lyme standard testing, such as Labcorp and Quest, by major laboratory companies is highly unsatisfactory. The ELISA test detects about half of the Lyme cases and only a little better is the western blot, which applies to the acute Lyme cases.
If you were exposed to Lyme months or years ago, then there is essentially no chance that it will appear in standard testing. This is why both an antibody tests are ELISA and Western blot. Once Lyme is chronic, the immune system is suppressed and the body normally discontinues antibodies to Lyme bacteria. The test will return negatively if no antibodies are detected.
However, many TBI specialists still recommend that these standard tests be conducted, as some are lucky and positive.
I haven’t been so fortunate. In my treatment, I always feel that my physicians are missing something, so I decided to pay out of the pocket and test iGenex.
iGenex is now considered the Lyme test gold standard, but better tests will be underway and on the market in the near future. iGenex testing is not covered by most medical insurers. The basic Lyme panel costs approximately $300, but it is worth every dollar if you can make the right diagnosis.
TBIs are difficult to treat, but people get back to life. One of the worst things about the Lyme epidemic is that millions of people live with a treatable condition, but treatment is only possible if you’re diagnosed correctly!
Probably your doctor or rheumatologist will not be very helpful if you have TBIs. Because most mainstream doctors don’t believe in chronic Lyme disease, Lyme is told that it is easy to cure with antibiotics for two to four weeks.
Yes, antibiotics work quite well for people with acute Lyme, but for those who have long-term exposure, they are not so efficient.
TBIs are extremely complex and hard to treat once they are chronic, therefore it is important that they are tested by the proper assessment and treatment of the well-trained Lyme-literate physician (LLMD).
You can easily connect with your local Lyme support group and ask for recommendations to find a Lyme specialist. On their websites, LymeDiseaseAssociation.org and ILADS.org have physician refers.
However, I will warn you that most LLMDs are excluded from health insurance. This is mainly due to the amount of time LLMDs spent with patients. There are several reasons for this. It usually takes about an hour to appoint me with my LLMD. These doctors can not be financially solvent if they rely on insurance refunds to cover their time and expenses.
However, there are good news: insurance will usually pay for routine laboratory work and drugs.
Depending on your practitioner TBI treatments vary. Some prescribed long-term antibiotics, some employees combined these two methods with all-natural herbal protocols. Alternative treatments such as ozone and stem cell therapy have also proven beneficial.
Myths about Tick-borne Infections
I thought some of the myths about Lyme disease and other TBIs were a good idea to dissimulate as well.
Myth # 1: You must remember a tick bite to get Lyme disease.
Wrong. Approximately 30 percent of Lyme people remember that a tick is never asked. Tick nymphs (baby ticks, i.e., baby ticks) are about the size and easy to miss.
A few years ago, I talked to one Lyme patient who doesn’t remember having ever been bitten by a tick. She shares with her dog her bed and suspects of being bitten during sleep. Every animal owner might have this scenario!
In addition, there is evidence that other tick-borne vectors, like biting flies, fleas, mosquitos and sand fleas, can carry TBIs. Some LLMDs believe that it can also be transmitted from mother to child via sex and in the womb.
Myth # 2: If you’d have Lyme, you ‘d have a bull-eye rash.
Wrong. A bullseye rash develops only around one third of people with acute Lyme.
Myth # 3: Your physician tested you for Lyme and it was bad, so Lyme isn’t there.
Wrong. The standard tests for Lyme disease, as previously explained, are only 50-60% accurate. You might have a negative test result and Lyme still!
The majority of Lyme specialists rely on a private lab test combination – iGenex is the most common – and a clinical test for TBIs.
Myth # 4: You don’t have to worry about Lyme disease, either in the northeast or in Michigan / Wisconsin.
Wrong. In any country in the United States, Lyme disease and other TBIs are endemic.
Myth # 5: A tick must be held in place to transmit Lyme and other TBI for 48 hours or more.
Wrong. TBIs can be transmitted within minutes after a tick attaches to the skin. There is evidence.
Myth # 6: Antibiotics is easily used for TBIs.
Wrong. Wrong. Lyme is a pathogen of stealth and uses several strategies to evade the immune system. In case antibiotics can not penetrate the bacteria deeply into the brain and body tissues. Sticky biofilms are also produced in which the immune system and antibiotics can be securely hidden.
The problem is that Lyme is rarely transmitted alone. The most common are bartonella and babesia. The other ticks have other TBIs. These co-infections may be as serious as Lyme and require a special treatment of their own.
During treatment, every TBI has to be addressed, or you will never improve.