Get well soon Tricia

My sister Tricia has always been a super hard-worker, very independent, and a self-made girl! She has a degree in psychology and is a Registered Nurse and had been doing travel nursing for awhile, finally taking a full time job in an area of the country that she liked. In the last several years, even before she was done with nursing school, she started having symptoms and none of the doctors in NYS that she had seen could figure out why she had these symptoms. The closest they could get to it most recently was a "non-specific auto-immune issue".

Tricia has had worsening symptoms the last several years that make it difficult to do daily activities and perform her tasks at work. Some of her symptoms were: vision disturbances, hearing loss, migraines, air hunger (shortness of breath without low oxygen), irregular heart rate, severe fatigue and short term memory/concentration difficulties.

After about 7 years she has finally found a place in Florida called LifeWorks Wellness Center that has been able to give her some relief from her symptoms after extensive testing. Tricia was diagnosed with three tickborne illnesses with substantial biofilm (basically a way the germ insulates itself against antibiotics), Epstein-Barr (chronic fatigue/Mono germ), adrenal insufficiency, immune suppression and Babesia ( which is a parasite similar to Malaria).

According to the book "Why Can't I Get Better" by Dr Horowitz, who is an internationally known infectious disease specialist, a study done fairly recently in NY showed out of a sample of ticks collected about 70% of them had only one infectious organism, 30% had two or more organisms, and 5% were infected with 3 or more different infectious organisms, so the problem is not JUST Lyme.   Dr Horowitz talks in his book about the complicated web of symptoms and why it can be so hard to diagnose and treat tick-borne illnesses.  If someone's immune system is overtaken by multiple organisms at once, and because they affect the whole body, many people who aren't treated early enough end up with other issues as well including adrenal fatigue, hormone imbalances, mitochondrial dysfunction, neuro or psychiatric disorders, insomnia, autonomic system dysfunction, allergies, gastro-intestinal issues, and chronic inflammation/ reactive arthritis,  even deposits in the brain which look similar to that which occur in Multiple Sclerosis.

To add difficulty to this, because research is still developing and because this is a such a complex issue, legal and epidemiological information have not caught up with the current problem. For example, when the same Doctor who wrote the above mentioned book was finding Babesia in his patients in Dutchess county in NYS, the health insurance companies would not pay for the treatment because according to the health department there is no such thing as Babesia in this area, so they assumed his test results were false positives.

Even though the labs the doctor used were subsequently vetted by the government and found to satisfy their scrutiny, this Doctor never was able to have his issues resolved with the health insurance companies.  Over a period of time he was forced to become private pay only, since this was the only way he could continue helping his patients and do what he felt was best for them, instead of what the health insurance and government thought was best.

It is interesting to note that the same doctor mentioned above states many of his patient's who end up being diagnosed with Lyme and co-infections had been originally diagnosed with serum negative rheumatoid arthritis, fibromyalgia, or non-specific autoimmune issues by either patients primary care physicians or by other specialists. They were treated as such and never had improvement in their symptoms, so they ended up looking elsewhere, eventually finding Dr Horowitz who finally gave them a treatment that was helpful.

Another issue that many people already know about is the lack of sensitivity of the Lyme and other co-infection tests, including the ELISA and the Western Blot tests. There are many false negatives possible, since the sensitivity can be very low depending on the lab. I have come across about 8 patients of mine in my outpatient physical therapy job in the last 6 years who I strongly suspected had some form of Lyme and have watched their frustration with migrating symptoms and odd combinations of symptoms, as they may see three or four doctors and still have no answers. Fortunately there is one Lyme center in the area, the Stram Center, but again they are private pay only, which gets extremely expensive.

All this to say, good and effective Lyme/co-infection treatment is not currently covered by health insurance, at least not in NYS or FL right now to my knowledge. If it is a simple case of Lyme alone that is caught quickly, the antibiotics may wipe it out, which is what the standard treatment is in NYS at this time. However, in rarer cases, if not caught early enough or if one or more co-infections are present, a course of antibiotics may not take care of it and it may fester below the surface, with the person developing new or variable symptoms as the disease affects different areas of the body.  These symptoms can include: night or day sweats, extreme fatigue, re-occurant malaise, brain fog or difficulty concentrating and making decisions, weight changes, GI issues, nausea/vomiting, chest pain, air hunger (shortness of breath without actual oxygen deficit), heart palpitations, joint pain and swelling that may be specific to one joint or migratory around the body, muscle cramps and twitching, headaches, stiff neck, tingling numbness/burning/stabbing sensations, facial paralysis (Bell's palsy), ear ringing, vertigo, difficulty with balance, poor memory, disorientation, mood swings, depression, disturbed sleep.

So basically, my sister Tricia who is normally a healthy and active and productive individual has to deal with this sickness, feeling ill all the time while trying her best to do all her daily and work activities. In order to be treated and become better she has to come up with 15,000 dollars out of pocket for the initial testing and treatments in hopes of being able to function again.

I would like to ask for help in funding Tricia's medical bills since it is a tough burden for her to bear alone. I know she would do the same for me or any of her friends if she were able. No pressure , but just wanted to get the word out for anyone who might be willing to pitch in a bit to help Trish! Please feel free to share this with your friends/ family, or other people who you feel may be interested! I'm doing this through facebook, not email, since it has potential to reach the most amount of people this way but feel free to email to people as well if that is easier. Thank you for helping if you can and please pray for Trish to get well soon!!!

Lydia ( her sister)

P.S. if anyone is interested in this issue, I would highly recommend the book "Why Can't I Get Better" by Richard I Horowitz, M.D. which I am currently reading and has been eye opening! Also! I am not an infectious disease specialist, M.D., or an expert in Lyme I am just sharing my personal experience with it as a physical therapist and as sister to someone who has been experiencing these issues. If anyone disagrees or thinks I got something wrong I am open to discussion, since this is something extremely important to me and I would welcome any additional information! "


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Lydia Cable Repnoy 
Rensselaer, NY
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