NH Lyme Conference, 'A Team Approach'

This upcoming Saturday, the 19th, our second annual Lyme Disease Awareness Conference in Laconia, NH will take place, run mainly by the Lyme411 Lakes Region Lyme Support Group. This is an event where Doctors and other educational speakers will talk to the general public and other health officials about Lyme, its management, treatment, and a team's job to overcome it. A Lyme Disease literate MD will be speaking on Saturday, at Beane Conference Center on Blueberry Lane around noon. I'm excited to see what he will bring to the table as I have not heard him speak at an engagement like this before, and I'm sure many people will have their eyes opened to the subjects on his agenda. Julia Greenspan, a well known Lyme Literate Naturopath from New Hampshire will also be speaking on  Lyme and Tick Borne Illnesses. She was interviewed on WMUR within the past 6 months, and is a nice addition to the speaking team. Also a licensed RD or Dietician by the name of Marilyn Donnelly of Concord will provide insight into the team approach as well. Hopefully a good turn out will enjoy the speakers, and take the time to come say hello to me in my lime green flip flops and skirt.

For more information visit the conference facebook event page at: http://www.facebook.com/events/383213395052874/?notif_t=plan_user_joined

or comment below.

The Beane Conference Center is at 35 Blueberry Lane, Laconia, NH.
Hope to see you there! Event flyer below.

New Diet

The Doctor prescribed a Gluten/Casein Free diet on top of my Lactose/Caffeine free diet. Gluten is a protein in wheat products (wheat, rye, oats, barley), commonly avoided in Celiac Disease. There is a small selection of Gluten- free made products, treated for the Gluten, such as Pita breads, Organic salsas and dips and ranches, specific chips and breakfast foods, etc. There are also a few foods without gluten that can be consumed with careful attention to the Nutrition label (yeah, remember where that is? That little hope killer on the back of packages....).  Corn chips have no gluten or wheat products, neither do meats, and most dairy products. If you are taking just a gluten free diet than you have still a fairly wide variety of substitutes, etc. Casein is a product for preservation of dairy products. It is in all dairy products, unless they are specially labeled otherwise or labeled for vegan use. Casein is a broader spectrum to avoid then Lactose, and can be labeled as a 'caseinate' or 'milk protein'. Its often avoided with gluten free diets in Lyme or Autism. Lactose is sugar naturally found in milk and dairy products. These products can be treated for the lactose and therefor called 'lactose free' and there are special ice creams and milks and even cheeses for this purpose, but mostly you can drink soy and almond milks as in a casein free diet. Lactose is commonly avoided in lactose intolerance or lactase deficiency, where the body cant break down the sugar. That can usually be taken care with a 'lactose' pill that substitutes the ability to break it down in the intestine track. Caffeine is a preservative and chemical put into most soda and tea products that gives you energy and some flavor. Caffeine along with Casein, and Gluten are very inflammatory foods for the digestive system, and can be feeding the Lyme Disease and giving it fuel to fire. Caffeine is not in most lemonades, orange sodas, caffeine free sodas, or caffeine free teas. Be careful to avoid this disgusting toxin as well as fake sugars in candy and gum (or artificial sweeteners in some bottled drinks and juices) Diets can seriously improve treatment of many diseases, even cancer, and can increase overall health and energy. I hope you appreciate the information! :)

New Specialist in Vermont

Friday was the end all, be all. I had been suffering from autism-like symptoms for just days, since the Saturday before. Yet still I was bad enough, pacing in my wheelchair, screaming at the ceiling, talking a million miles per hour, and sometimes not even making sense with my mumbling, to the point of keeping myself up at night, that a doctor in west Vermont was willing to fit me in his busy schedule that week. After hopeful calls to Dr. J in Connecticut, the world's only pediatric Lyme specialist, we got a hold of the doc. himself and he said his practice    was closed to new patients but he recommended the doctor in Vermont who was familiar with Autism and Lyme. He fit us in around lunch time Friday and it was a hectic 3 1/2 hour car ride there. The whole time I chattered and screamed out the window and I don't even remember the trip. Talk about a long car ride, I'm sure both my parents and my boyfriend Tyler were ready to leave me in Vermont. The Doctor saw me throughout the 2 hours in his office and prescribed the step we are going to take before we try IV Rocephin treatment. I was prescribed anti fungals short term, anti inflammatorys for my brain, a medicine in the same family of Rocephin called Onnicef,  along with Zithromax and Plaquenil, even B supplements. I am also on a Gluten Free, Casein free, Caffeine Free, low Sugar diet, see post about New Diet. This should be a fun trip and the hope is to reduce neurological inflammation and increase my energy levels.

Lactaid Deficiency

The final test results and biopsy results came back from my endoscopy. They had said everything was fine, but know I am up against the toughest dieting challenge I think I've ever faced. After trying to reach us for days we finally have learned that the results showed I am lactaid deficient, which is very similar and parralell to lactose intollerent. I now am Lactose free with my diet and trying to fibns things like rice milk, soy cheese, and an alternative to pizza! I didn't realize even bread sometimes had milk in it, this is a big deal but is another challenge for me to beat down.

We believe from some of what we've heard that possibly this is due to the chronic antibiotics I have been on the past year. This would all make sense. If it's not that it could be caused by the Lyme or the co-infections, even possibly something that just simply developed! Hopefully it will get better soon when I see my gastro MD and she prescribes a pill with the digestive enzyme in it that i will take with any dairy food! I am going to see a nutritionist too, hope all goes well there! For now this is my latest update and as i am coming to accept it is another road block that I have to climb over in my path to recovery!

GI Symptoms with Lyme Disease

One thing that ropes in with Lyme is multiple types and dimensions of GI ( gastro-intestinal) problems. There can be many sorts of pain in different areas throughout your entire GI track. I have experienced different symptoms of pain and problems for a very long time now, since I was 8 or 9, and all of it was worsened, we believe, by my Lyme infection. Since a very young age I had trouble with the fluid motion of my whole system, and keeping everything running smoothly. One thing we discovered after seeing the GI specialist was that I had acid reflux. Acid reflux is when the bodies esophagus muscles aren't strong enough to hold the stomach's acid where it belongs. This causes pain, 'heartburn', nausea, and irritation of the esophagus. I had mostly an issue with 'heartburn' and nausea, some vomiting at late night hours when I was lying in bed, and the acid was worse. I have taken multiple medicines to reduce the amount of stomach acid over the years, and have had to prop myself up at night. Since I got Lyme the GI track has been far more irritated, and I've had to have a special bed that mechanicaly inclines like a hospital bed, to encourage the acid to stay down (thank you gravity). I am most recently on Axid, which works more with encouraging the bodies natural ability to hold down acid and food with a small sphincter-like muscle at the top of the stomach, between stomach and esophagus. It does also reduce acid, called an acid inhibitor, or antacid. This is a prescription medicine.

I originally in April or May of 2008 wnet in for an endoscopy to see why the stomach was hurting so much worse since October 2007, when I got sick. They discovered multiple ulcers numbering up to 10. his was gtreated with antibiotics in case of H-pylori (bacteria can be in stomach, treated for it even though it was negative, I had it in the past in a stool test, and we treated it then too.) and other soothing medicines to heal the ulcers. Today, July 29 of 2009, over a year later I went back in for another endoscopy to see that the ulcers were gone, and the upper GI system is doing good. The axid is proved to be helping me.

I can't say that my stomach will stay well, as I am still on hard core treatments for Lyme and coinfections and don't plan to be well soon, but it is encouraging to know I am doing a little better in at least one area! :-)

Protocols

For me, I believe it is more than just the antibiotics to treat an illness like this. More than the herbs, the vitamins, anything. But for now let me talk a little about the medicines I have tried so far.

To start with, my LLMD recommended I start on herbal treatments before I even got the test results back. Here is a list of the herbs that were meant to fight the Lyme and co-infections over the past 1/2 year: Andrographis, Artemesia, and Cat's Claw. All of these and dosages can be found in the Healing Lyme book I recommend for reading. The necessary herbs were Milk Thistle for liver function, Probiotics for multiple reasons, a daily Vitamin, Vitamin B-complex, Magnesium, Vitamin D, Co Q-10, Fish Oil (Omega 3), and for sleep Valerian Root and time release Melatonin work the best. in total right now I take about 38 pills a day, and it is really tough on my stomach so I drink Aloe Vera Juice to coat the Upper GI track (throat and stomach).

In the beginning when the results were finally back as positive and it was time to treat, the LLMD put me on the above 'cocktail' of herbs and Biaxin. When that proved very little effective we switched onto Biaxin and Bactrim. Neither quite helped so after time we switched both of those to high doses of Amoxicillin. That was ineffective as well. Now I am on high doses of the above herbs and aiming for a herx, anything to show that the medicines are working. If you would like to look into any treatment like I have done, just remember that the side effects may differ. I have been effected minor and also have had increasing fatigue from time to time. it is said that Lyme makes cycles and gets worse for an allotted amount of time every 3/4 weeks.


Elaina