Today, Monday, April 20, 2009 I finally had the doctor’s appt I wish would have been possible back in April 1991...it was a long time coming but I am grateful to finally sit down in front of a doctor who not only understands my disease but treats me like a person and communicates in a way I (Lyme brain and all) can understand!!
Thanks to a good friend who informed me of a local Lyme Conference that took place mid-March I was able to hear Gerald Simmons, PA speak about this complicated disease and all its co-infections. I learned more from him in 2 hours than anyone (other than all the books I have read) has been able to teach me since my diagnosis. Gerald Simmons was the Physicians Assistant for what is now one of the most well renowned Lyme Specialist to date, Dr. Joseph Burrascano. He worked along side him for 12 years until he closed his practice. Gerald Simmons is an award winning Physicians Assistant who now serves on multiple boards for tick borne diseases and is up to date on the latest breakthroughs in treating these complicated diseases.
He now works out of The Morrison Center in NYC, a practice dedicated to Integrative Medicine. The Morrison Center "champions a nutritional approach to healthcare as well as preventing and reversing degenerative diseases. Specific treatments are aimed at enhancing the body's ability to heal and detoxify itself. These safe, non-toxic and non-invasive therapies are proving to be more powerful than conventional treatments, which utilize often dangerous drugs and surgeries."
This is the very approach I have taken in treating my Lyme disease and co-infections but I have been left to do all the research and figure out treatment on my own as my previous Lyme Specialist has very little experience with this form of healthcare. Antibiotics and other pharmaceuticals are still used by my new Specialist, however he uses all forms of nutrition and non-toxic therapy first to kill the bacteria before prescribing drugs. His approach is "whole body". He has already taken extensive blood work (full results in 1 week) and started me on a treatment plan that far exceeds anything I have been able to do to date. I found out more about my current health and the infections I am fighting in my 3 hour appointment with him than I have since I first fell sick at 15 yrs of age.
My full treatment plan will be determined once he receives all the results from my blood work in about a week. However, there were immediate determinations he was able to make based off my examination, past history, previous blood work and current list of symptoms. So here is a synopsis of his current evaluation of my health and my treatment plan to date (I will be detailed for my Lyme friends who may benefit from some of his recommendations!):
•He immediately put me on B-12 shots 3 times a week when he saw my B12 level which my neurologist said was "normal". Not so for a woman in her early 30s with Lyme Disease! So Dan who has a MAJOR needle phobia has become my nurse and must administer my shots...again he proves what an amazing husband he is!
•He started me on an Iodine supplement (Iodoral) after I tested extremely low. Within 48 hrs of being on the supplement I saw a MAJOR difference in my energy levels. This is a BIG key to all my overwhelming weakness and iodine will also boost my immune system to fight!!! Over 90% of people test low for Iodine and women should be aware of this as low Iodine can lead to breast cancer, cyst issues and is imperative for anyone with a thyroid problem. ALL Lyme Patients should have this simple test done and I also recommend it to ALL the women in my life and men experiencing low energy.
•He has also put me on high levels of Magnesium which has already begun to ease up my extreme muscle spasms all over my body. Critical for Lyme patients and easy! I have also begun Potassium 2x's a day in a dissolvable form...minerals are critical!
•HOME OXYGEN!!! Wow....it has been known for years that oxygen kills bacteria and oxygen therapy has been used for Lyme patients usually through expensive Hyperbaric Chamber Treatment which most patients cannot afford (ME!). Dr. Borrascano began using home oxygen units with his patients usually for sleeping so you get long doses of oxygen a day. For me I am able to use it far more than just at night as I am bed and couch ridden 80% of the time. It assists in many areas...improves circulation, increases energy, oxygenates the cells, decreases my pain, helps me breath when my breathing becomes very heavy and labored, but most of all...KILLS BACTERIA which of course causes more HERX reactions which means often I feel worse, but as my specialist reminded me you MUST feel worse before you will get better!!! I have not taken pain killers at night to sleep since I have been on the oxygen and it has assisted me many times when I have been bad during the day as well....thank God for oxygen...something I believe I will be using long term!
•Candida (yeast overgrowth) in the body is a BIG problem for Lyme patients especially those on antibiotics and can cause any number of complications to the healing process. Since I have NOT been on any antibiotics since the fall my hope was that mine was under control but NOT so...I have begun Nystatin twice a day and have seen some improvement!
•Teasel Root (SpiroNil by PRL labs is the brand he recommends) which is a herb has a direct effect on spirochete type infections like Lyme. It has become a big breakthrough in Lyme and co-infection treatment and often has been able to replace all antibiotic therapy as it causes strong Herx reactions. I have just begun dosing myself with the Teasel Root today. You have to start slow...10 drops a day and slowly work my way up to 60 drops a day. It can cause such strong Herx reactions you have to go slowly to see what the body can tolerate. My Specialist hopes to see great success with this for me as he has with so many of his patients!!
•Salt / C Treatment...High salt, high vitamin C has been used as an effective Lyme treatment over the last few years. The bacteria hates the environment created in the body with high doses of vitamin C and salt present in the system. With the nutritional plan I have been using I get VERY high doses of vitamin C in my body daily however my body tested low in salt...yes, the body needs certain levels of salt to operate properly and Lyme patients tend to need more salt in the system
than most. So I have begun two salt pills a day and am using more salt in my diet.
•Florastor is a probiotic that has been proven the best on the market. He has added it to another probiotic I take twice daily...the more the better but unfortunately they can be a pricy supplement!
•Physical Therapy (PT) and or exercise is KEY in the treatment for Lyme. It is a tough one for Lyme patients as our bodies have been under such attack most have lost an incredible amount of muscle tone and experience such severe weakness that exercise is overwhelming and impossible at times! I have to start with PT as I have been mostly bedridden for so long. Stretching, heat and massage is all I am allowed for now but my body is already responding positively after only a few sessions. Encouraging but frustrating for a former dancer and exercise freak!
•Diet & Nutrition is the best way we can enable the immune system to do its job in fighting disease. My Specialist is VERY pleased with all I have been doing and feels that the discipline I have used in my dietary choices gives me a strong chance of taking me all the way without the use of high dose antibiotics. He is checking all of my Vitamin and Nutrient levels as it is possible I may NOT be absorbing all I am taking in due to the inflammation from the disease. We will know if Nutritional IV Therapy is needed after my blood work comes back. It continues to be a lot of work daily for both Dan and I to keep up with the diet and nutrition but we are committed long term because that is what it is going to take!!!
•He feels Antibiotics may be something we may have to consider down the road for one of my co-infections but for now I am NOT on any antibiotic treatment.
That is the basic run down for now. Next week I will have a much better view of where my body is at after my blood work is in. My Specialist has also determined that my Lyme and co-infections seem to have emerged more neurological than arthritic in my body however both are a problem for me. I am so thankful for the Lord bringing this specialist into my life. I believe this is the man God has hand picked for me to see me through this journey.
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