Tuesday, August 1, 2017

You Don't Look Sick...Or You Do!

     Most times Lyme Disease leaves us in an almost non functioning condition. Simply walking from one room to another seems a huge effort. The majority of us have pain, fatigue, stiffness, brain fog, depression and several other symptoms. Yet we might look perfectly fine.
     On the other hand, some of us do not look fine. We appear sallow, become very thin and have that worn out look. 
     During my various bouts with Lyme, I have had times when I looked ill and other times when I looked perfectly well.
                                                  Lyme - looking too thin and ill phase

                                                               Looking fine phase

     There have been incidents after which I'd decided that it was better if I looked sick, this way when I say I can't do this or that, or go here and there, it is not viewed as laziness, an excuse, or not wanting to be social or helpful...whatever the case might be. Even if I verbalize that I am not feeling up to it, my appearance sometimes contradicted it.
     It is important to do what we have to do to feel better, even if it means missing out on certain events, social activities and even obligations. We need to rest, to pamper our bodies and our minds, as we seek healing of this disease.
      And since there is a lot of ignorance concerning Lyme Disease, it's difficult for those who don't have it to grasp the myriad of symptoms that can swoop down upon us and render us unable to do what we want and often times, what we need to do.
      Many assume when you get Lyme Disease, you have some aches and pains, you take Tylenol and an antibiotic and it's over and done with. That's a possibility but not a common outcome.
     Most people with Lyme Disease have a lot of pain to the point that doing ordinary chores and day-to-day things is a real struggle and exhausting. The pain tends to move around in a lot of us. One day it's our shoulders and then it's the hips and knees or all of these. New pains and discomforts pop up out of nowhere. One day I was shopping at the supermarket and suddenly felt as if my legs could not move. It's often a roller coaster of  feeling terrible and then feeling a bit better.
     The point is, how we will feel each day is unpredictable. So, when we do not feel well, we cannot always say 'yes' to others and that is OK. We might have to cancel going to a luncheon, a shopping trip, dinner with friends, or on a date. And that's OK too.
      If we are fortunate to look well and healthy but feel awful, we need to speak up. At the same time we are educating others about Lyme Disease, so it's a good thing. :)     


Saturday, April 29, 2017

Lyme Disease and Immune System-

An interesting and informative book by Dr.William Rawls tells us that we who
contract Lyme Disease most likely have a faulty immune system.
In my case, this is definitely the case since I have an auto-immune disease since age 27.
It always wondered me why so many people I know who live in the area in upstate, NY
have not contracted Lyme, and yet, even though I cover up well, I have chronic Lyme.
Now it all makes sense.
The idea is to strengthen our immunse systems. Not boost it, as most of us with auto
immune disease have over active systems. In other words, they attack the bad guys and
the good guys and get overtaxed.
Even if our immune system is weakened by overwork and ongoing stress, it makes us more vulnerable to getting sick from a tick bite. This is what happened to Dr. Rawls in his medical profession.
Herbal therapy is the suggestion of Dr. Rawl's, along with a clean diet and exercise and, of course,
being careful in the great outdoors to avoid ticks and even mosquitoes as they are not being
suspected of being able to transmit tick borne disease as well.
One place, he says, is tick free is the beach! So if still wary of the woods unttil feeling better, get out and
get some fresh air at the beach, if you have access to one.
In any event, I highly recommend this book: Unlocking Lyme Disease by William Rawls. MD.

Saturday, April 22, 2017

Informative Lyme video from LymeDisease.org

 Lorraine Johnson, CEO of LymeDisease.org, presents results from MyLymeData in San Ramon, CA, on April 8, 2017. MyLymeData uses big data research tools which allow patients to quickly and privately pool their data to determine which treatments work best. For more information, go to www.LymeDisease.org.


Friday, March 31, 2017

Diagnosed with Babesia - Tick Co-Infection

    I never really looked thoroughly into the other infections that ticks carry and transmit, other than the Lyme bacteria, until I got diagnosed with one...Babesia, which is actually a protozoan parasite.
     Here is some information on it.

     It is a good idea to get tested for co-infections if you think you have Lyme Disease. The same tick can transmit more than one disease.
The location of the infected tick I presume was Greene County, NY, where we have a part time place. 

Monday, January 23, 2017

Tiny Ticks...a Big Problem...

It's still January and lots of folks are counting down the days until springtime. Along with the pretty flowers and nicer weather, comes ticks. This is not meant to put a negative spin on fairer days, but as simply a reminder to be mindful.     
The problem with ticks is their small size, especially in early spring when the 'nymphs' are
predominant. They are the size of a poppy seed and can often be mistaken for a piece of lint or dirt on a sofa, mattress, lounge chair or picnic blanket. Most times, however, they are not even seen.

Once the summer gets underway their size increases but they are still fairly small
and tend to crawl into places like armpits, under our hairline and behind the ears; in the folds of our bodies unbeknownst to us.

The bottom part of our legs or our ankles are often where the ticks usually hitch their ride as we walk in tick populated areas.                                        

This is why it's a good idea to wear light colored clothing and long socks. Another good practice is to place your clothing in a dryer for twenty minutes after returning from outdoors. The heat will dry out any tick on your clothing and it will die.
Shower and check for any brown or black spots. Have someone look over your back or look at yourself  in a long mirror.
Get a lint remover and go over yourself with it before entering the house.
Ticks do not fly or jump. They reach out from a blade of grass, a weed or some other shrubby they are on and latch onto us. They do the same with animals and this is how they are transported from one area to another.
Sometimes it's the things we cannot see that can cause the most trouble.

Thursday, January 19, 2017

Daryl Hall of Hall and Oates - His Experience with Lyme Disease


My Story...

     I always wanted a get-away place in the country. And so 13 years back, my husband and I purchased one on 2 acres of state forest land, thanks to a small inheritance from my mom.
     I'd heard about ticks but was more wary of mosquitoes, since I am easily bitten. Then I saw a sign by the trail head warning of ticks, how they look and that their most active season is May through Oct. The time period we usually go there. So I never wore shorts or sandals.
     In June,2007, three years after the purchase of our country house, I got at least thirty bites in a few days. Some were mosquito bites, others were from black flies and who knows what else?  I took precautions with repellent, but to no avail. It was the first time I'd gone during the month of June and decided it was not a good time to go to the woods.
       A month later, in late July of that same year I began experiencing stiffness and could not squat at all due to pain in my knees. Then I developed a low grade fever. At the time I was seeing an acupuncturist. She thought it was a 'summer flu.' I knew that couldn't be, since I'd had the flu vaccine and hadn't been with any sick people. Plus, this was different. I had no cough or respiratory symptoms and could barely walk.
      My doctor was on vacation. I went to another doctor and he ran a bunch of blood tests. All negative. During that time I had an appointment with my dermatologist and told him of my dilemma. He sent me for a blood test for Lyme. It came out negative. The pains increased and the low grade fever continued.
       After two weeks when my doctor returned, he immediately said: "It's Lyme" and sent me again for blood work with the Western Blot. Band 23 Igm came out positive for Lyme. He immediately prescribed Doxycycline for two weeks. It took almost a week for the fever to be gone. And then the pains subsided.
      Not long afterward, I developed pain in my shoulders, and my arms and fingers were so stiff I could barely brush my teeth or dress. More blood work. I was then diagnosed with Polymyalgia Rheumatica since all my pain was bilateral (both sides) and my Sedimentation Rate (inflammation marker) was very high. The diagnosis was confirmed by my immediate response to Prednisone. I was told that Lyme Disease doesn't respond to Prednisone. My doctor speculated that the Lyme had triggered the autoimmune disease.
     Once that was under control but not gone, needing to remain on a low dose of prednisone, with various increases and decreases every three months, I became reinfected with Lyme. This was difficult for my doctor because the treatment for Polymalgia is not good for Lyme. Several times I have had Lyme and Polymyalgia at the same time.
     This went on for years. Finally, I thought I was over it all but then came down with pain again. At that time people had told me that my pallor looked bad and then a nurse cousin suggested I go get tested for Lyme again. I got a positive result but it was for an old infection that had not completely been healed. This time I was on antibiotics for months instead of weeks until the positive was a negative.
      I ended up going back to the country house for a funeral of an older good friend in early June. I got bit again behind my ear at a friend's garden and assumed it was a spider bite as there was a small white one on my shoulder that I brushed away. The center of the redness there had a black dot but I never knew ticks could cause such pain and swelling. But it had to be a tick because I got sick yet again with a 'new' infection. Antibiotics once  more.
Needless to say, I became very fearful to go back to the country house for vacations. And whenever I walked on the wooded area of the property I dressed as if I were in the African jungle.
                                                      (READY FOR ANYTHING)
 Bout four came when I got bit on my lower front leg in May two years after that. It looked like a blood blister and I saw a teeny black dot under it. I called a friend who has a tick remover and we tried to get it out and she finally said "it doesn't look as if anything is under there. Just the blister." I agreed. My husband rubbed garlic on it as an anti-bacterial but his rubbing the area, we later learned, was not a good thing to do. This can press the toxins out of the tick into the blood. And YES, I got Lyme again.
My latest bout came last year in Oct. I began getting pain and one morning had a low grade fever for one morning at 99. The next week while upstate I developed a fever with aches and pains. I called my doctor and he advised I take two Amoxicillin pills at the same time. The next day the fever and pain were gone. I stayed on that antibiotic for 10 days. Apparently, it wasn't long enough because I then felt very ill and in pain a month later. Lyme testing was positive for band Igm 47 and 'undetermined' for band 23.  I was placed back on the Amoxicillin for three weeks. Next blood test showed less Lyme antibodies but still there. I already knew I was still infected by how I felt. LOUSY.  (Stiff neck, both wrists feeling as if sprained, backs of upper thighs aching, both knees hurting, tops of shoulders hurting, night sweats, throbbing arms, bad rib pain on the inhale and extreme fatigue.) I also have splotchy skin all over my body except for my neck and face. This is another "Lyme sign. It is called: 'Livedo Resticularis.' Have had it for a few years.

Addtional Note: I was again diagnosed with Lyme Jan. 2017. Antibiotics again for two months. THe Lyme resurfaced in March 2017. I received a diagnosis of: Chronic Lyme. 
I went to an Infectious Disease doctor as my next step in battling this disease and he said I did not meet the criteria for true Lyme. I was astounded as my blood work has shown band 23 and 41 positive many times over the years and a person with Lyme can tell by how one feels.
He did do additional blood work for co-infections and the results were: Babesia. I was given malaria medication and an antibiotic for one week.
I wonder if this is the cause of bad pain on my left side which many x-rays revealed nothing. I read that the spleen is involved with Babesia which is on the left side and can become inflamed with Babesia.
   While my doctor has read the protocol of a well noted Lyme Literate doctor, and is attempting to treat me the same way, we lack the advantage of having the specific blood tests for co-infections. Ticks can have several diseases at once and transfer them to us when we get bit. 'Lyme' (Borrelia burgdorferi ) is just one bacteria. There are others, and this requires different antibiotics since one or two doesn't kill all the different bacteria or parasite (Babesia) should they be present in our bodies. Since I have gotten bit several times, the likelihood of other infections seemed likely.
     I am also looking into the 'Bob Beck' Protocol using magnetic and electrical pulsing to cleanse the blood, and am on a 'Lyme Diet' which calls for very little sugar use, no vinegar, no gluten and dairy, (with a few exceptions) plenty of vegetables and only organic meat (although I am a vegetarian with rare exceptions when ill, using meat as a condiment..) The less inflammation we cause with food, the better the body can heal from Lyme.
     I'm learning that we must do what we can to strengthen our bodies as we go down the road toward healing. I hope some of the links, suggestions and info I will post here can be of help to anyone suffering from Lyme Disease.Or serve as information to those who want to avoid it.

Sometimes I saw a bite that looked like a tick which was very painful and red, other times I saw no bite or red spot anywhere on my body. My mistake was that I didn't know tick bites hurt so much and assumed it was a spider or nasty mosquito bite and treated it accordingly. 'Ignorance is not bliss.' We need to read all the info we can about tick bites, what ticks like and what they dislike, the best repellents and how to check ourselves regularly if we are in a 'tick' populated area. Deer and mice are the main carriers of the "deer Tick' which spreads the disease. So if there are deer in your area, (mice can be harder to detect unless they leave droppings) be mindful to check clothing, scalp and body for ticks. Even if you romp in the grass in city parks, be wary. Dogs that have been in tick areas with their owners on vacations or visits can carry 'deer ticks.' If there's grass, there might be ticks, city or country. But the likelihood of getting bit in the city is much lower than in woodsy areas.

I am no expert. I am still learning and perhaps we can benefit together.

 I love nature and hope I do not have to give up going to a beautiful part of NY State due to my fear of greater exposure there to Lyme Disease and further reinfection. But it might come to that, so as to give my body a break, until perhaps one day a good vaccine is approved for humans. After all, Lyme Disease is now an epidemic.