14 Year Old Daughter's Heart About Her Daddy Who Has Lyme's

Daddy

All of my life, Daddy had been (to me) the strongest man in the world! He would play with us in the evenings and do his independent carpentry work during the day, then turn around and ......

(Click link for full story.)

http://thefathersdaughter-felecia.blogspot.com/2013/05/daddy.html

MAY IS LYME DISEASE AWARENESS MONTH

MAY IS LYME DISEASE AWARENESS MONTH

  Lyme patients will get a chance to be heard this month as Lyme Educators will be speaking to politicians, medical professionals, and the public through out the month of May.

   ILADS (International Lyme And Associated Disease Society) will be speaking at a big Lyme Awareness Rally in New York City on May 10, 2013. What is awesome is that more than 20 countries are expected in attendance. [Would love for our family to be a part of this one!]

For more information regarding the rally, Lyme Disease Awareness Month and Lyme's go to:  www.ilads.org

Up-Date On Brad:
  Not a whole lot has changed for Brad. He is about the same since our last post. Though the breath hunger is not constant. But, still has hung on. The monthly migraines are the big 'kicker'! Every week always brings the faithful herx to Brad's body. He is still in a wheel chair when we are in places that require walking more than 100 feet.
  He has been denied disability now definitely 4 times. Three lawyers have helped but with no avail. We have not had any income since this ordeal began. Our church is unable to pay us as at all. Though, the provision of a parsonage is a great blessing of which we are grateful for.
  This sounds so depressing and scary  Frankly, if we allow ourselves to dwell on this storm...I believe we would sink. But, our hands are being held tightly by our daddy, our God! His Strength has been amazing through all of this. Admittedly we are very tired, needing a break. God knows. But, that doesn't mean we stop; we keep going forward-loving & serving others as we serve Him.
  Your prayers are coveted and if you are suffering as well---hang in there. Just take one day at a time. Laugh, reach out to others daily and love on Jesus! We are all in this together; we will make it!

Another Day/Another Doctor's Visit

Another Day/Another Doctor's Visit 

  My husband Brad (the Lyme/Babesia patient), had a doctor's visit today. Anyone who has this disease knows how after a long while, you get to the place you just do not want to ever walk through the door of a doctor's office again. Simply because you are just tired of the entire ordeal. Tired of waiting and waiting in the lobby, waiting in the room, 

waiting for blood tests or the results of the tests. Tired of doctors looking at you and saying we do not see anything wrong with you. Thus, we cannot help you. 

  This time was a wee bit different. Brad's hearing has been waning now for a couple months. Today, after the audiology exam they found significant hearing loss in one ear and a small amount in the other. They labeled it neurological hearing loss. About all she could do is well; you guessed it-NOTHING! 

  Our Lyme Literate Doctor has treated people who have gone both blind and deaf with this disease. As well as unable to walk and the list is quite long. We were encouraged to meet a married couple who both has Lyme Disease, the wife was both blind and deaf and couldn't walk. But, now is able to see, hear and walk. The aggressive antibiotic therapy plus the herbs was the answer for her. 

  Not even a month ago, Brad's vision was attacked. He woke up with fuzzy vision, eventually one eye was totally blurry. His right hand went numb on him too. Not knowing what to do and also encouraged by our L.L.Dr.; we went to our local M.D. We waited and waited to be told there was ...(ready) NOTHING they could do. What was interesting, once they knew he was diagnosed with Lyme, she didn't even bother to run a scan on Brad. Recall from past posts this all started after a knee surgery that developed a blood clot that hospitalized him for almost two weeks. Thus, the probability of him having another one is pretty good. 

   After being told about his hearing, tears came down our face. We have read a lot by now, we have listened to our Lyme Lit. Doctor with her words of knowledge, watched Under Our Skin and witnessed others face serious illness due to Lyme. With Brad not getting better now after 9 full months of antibiotics; we are feeling quite dismayed. But, strangely feel a deep peace (which we know is from GOD). After the tears, we both looked at each other and said; "All is well." Then, Brad looked at me and also said; "Well, here is another thing God is going to take care of." 

  This all is just too heavy for us to bear. For anyone to bear. Only Jesus can carry us; looking back at all we personally have faced through out the years; this knowledge has given us much rest and resolve. [R & R]

  Allow us to encourage anyone out there facing this disease. 

 1st:  Don't face this alone. My dh has a quiet personality anyways, but he is a very strong minded man. As he has gone through this, I have watched him sink more and more into himself. It was separating him from me, his children and his God. I prayed and prayed. Well, the Lord really touched his heart and he is much better.  

2nd: Total surrender! Don't carry this. When you are in constant pain this is not easy. But, if you cannot do anything but just say the Name of Jesus...whisper it, cry it...believe in this Name. I promise You will then feel His presence so strong because your own spiritual nature will be 'in-tune' to His Lordship. 

3rd: Keep the Hope at the forefront of your entire mind, soul and being. This is where so many patients loose heart. They give up, they stare at all the medications; they remember how active they once were, they see their families and feel left out. But, know Hope is life, Hope is a healer, Hope is the future and Hope is for now. I am telling you right now...HOPE IS JESUS! Him and him alone, not man...including you-Hope is Jesus being the Lord of Your Life. Ask my husband, he will tell you this. Ask me? My story is there too-I am in remission. 

4th: One day at a time. Enjoy every segment of the day God has given you. Being able to get out of bed. Be with a loved one. Shower, read; drink your coffee or tea and so on. Tonight, our family of 5 was so silly; we just simply sat in our living room being absolutely goofy. Laughing at the most simplest of things. Ahhhh, isn't that nice! 

  Hang in there my friend. When you yet have another doctor's appointment, remember this blog-article. Though we are tired of waiting; say: "All is Well" and go forward one step at a time. 

--------------------------------------------

Brad's New Med's:

Sumatriptan  50mg

Clindamycin  300 mg  2-3X a day

Minocylcine  100 mg  cap teva 1-2X a day

Hydroxychloroquine  200 mg Ran  2 a day

Amitriptylin 25 mg tab Sand 1 at bedtime

  These have seemingly been much better on his stomach. There have been new herx's that have arisen:

Eyes going fuzzy & numb hand- but he is able to function a little better sometimes.

  The herx's (and other side affects) he does have:

heart pain, neck-tension pain, joint, migraines, no taste buds (all the time), dizziness, concentration, depression, moodiness, breathlessness, skin rashes, bloating, high blood pressure, high pulse rate. Unable to walk distances past 50 feet. 

  If you have these, it might be good to locate a Lyme Literate Specialist near you. 

Under Our Skin: The Untold Story of Lyme Disease

By Dr. Mercola

http://articles.mercola.com/sites/articles/archive/2012/10/13/under-our-skin-documentary.aspx?np=true

Patience Living With Lyme Disease

Here is a journal of Brad's thoughts dealing with the struggle of living with Chronic Lyme Disease. 

Brad Snowden still in a wheel chair,
because of pain and severe weakness.
He becomes dizzy, breathless & heart
hurts just after 50 feet of walking.

  There is a word that most of us don’t like or certainly pray about and that is patience.

  This however is very important when we think of Lyme's, because there are no cure all formulas . It is not like a cold that will simply go away with time and  in dealing with this disease, it is a long haul prospective that helps deal with it better. The long haul can in some ways be the most discouraging part, because every long day can seem like a fight just to get through it with a since of sanity intact .The fight isn’t for the short term but for the finish that is the focus. There are many scopes of treatment which may only focus on the short term and that is probably the difference of approaches. 

  I believe every patient  desires the treatment to be quick as possible but more important to me is the complete control of the symptoms. The challenge for me is the mental focus on the goal and to have the drive to finish no matter how long it takes. It takes patience with the treatment as well as with yourself   The key is to deal with the now so there can be a bright future. The focus must be on the journey to the very end and not on the calendar  and it is not easy to over look the time it takes yet, it will produce the end result we strive for if we are patient.

Anaerobic Bacteria & Lymes

  This is Brad and I have a new twist to what is going on inside my body. I have a bacteria that has been affecting my stomach  for the past three weeks. This particular problem is  something that effects Lyme's patients and for me it has changed the way I perceive the digestive system.

   I first noticed that my stomach was super sensitive and reacted to almost everything I ate, then it continued to get worse and aloe juice no longer helped. I also noticed I was having hunger pains (as if I hadn't eaten in days). Exactly right after eating,  bloating then followed. It proceeded to the point that I just couldn't keep anything down (including all my medications) and this lasted for a couple of days.

  My wife and I decided to just stay off my med.'s suspicioning the antibiotics were doing havoc to my stomach lining. Yesterday, my Lymes Specialist verified that I did need to stop the antibiotics for now. She put me on Flagyl which is an antibiotic to treat Anaerobic bacteria. This bacteria has been growing immensely; one of the reasons my appetite even increased and likely why my belly has been swelling up. I will be on it for at least three weeks and start back on my regular meds after that. She said many of her patients 'hate' this medication. One being it does make all the herxes surface severely. It also causes a great amount of diarrhea.

  My physician said this is quite typical for Lyme Patients as they under-go such an intense antibiotic therapy. This is 1,000 mg- 500 per tablet. First day I am to take 2 tablets and build up to 3 tablets a day.

  My symptoms of the entire disease have NOT decreased. Still encountering great pain and weakness.

  So, here we go with another dilemma in this on going battle of this disease. I know with the Lord as my strength and my family by my side victory will come soon.

Why It's Hard to Diagnose Lyme

IS THERE PROOF IN THE PUDDING?

Recently my husband was denied disability because of the lack  of proof that he 'officially' had Lyme Disease. As I wrote in my first post, the Lyme doctor we found 'diagnostically' diagnosed him. This was after droves of tests (blood, scans, x-rays...etc) were ran and came back clear. In light of all of this, the symptoms pointed strongly to Lyme and Borrelia. We brought this denial of the disability to our lawyer and since the specialist in heart, pulmonary, hematology plus others said there was nothing wrong and the blood test for Lyme came back negative the lawyer said with his experience in disability that Brad's chances of obtaining disability are none. Until we can acquire blood tests to prove to the panel of doctors (and whomever else) we might have a minimal chance.

 Yet, Brad's tests were ran using the Western Blot; therein lies the problem.

 "When used as part of a diagnostic evaluation for Lyme disease, the Western Blot should be performed by a laboratory that reads and reports all of the bands related to Borrelia burgdorferi. Laboratories that use FDA approved kits (for instance, the Mardx Marblot®) are restricted from reporting all of the bands, as they must abide by the rules of the manufacturer. These rules are set up in accordance with the CDCs surveillance criteria and increase the risk of false-negative results. The commercial kits may be useful for surveillance purposes, but they offer too little information to be useful in patient management." [http://www.ilads.org/lyme_disease/about_lyme1.html] As well as for us, this test is quite expensive and our doctor told us since we do not know 'when' Brad was bitten and also the protien bands will likely not surface, all depending on the time of the month when some levels rise and others lower.

Brad has chronic Lyme and this is even more disagreed on in the medical field with many doctors (including the one's he saw while we were in Chicago). Read this quote from http://articles.ky3.com/2012-04-05/chronic-lyme-disease_31296702; "The controversy is more complex than whether or not it exists in  ...The skepticism comes more in with the later stages. A lot of disagreement in the medical community about whether or not late term Lyme disease exists," said Fansler."

All in all, this attributes more to the frustrations of this crazy disease. It also has made our personal lives even more interesting (to say the least). Brad is not able to concentrate, suffers greatly with tremendous pain and is exhausted. This obviously means he is not able to hold down a typical job. Praise God he preaches on Sundays as we pastor. He makes hospital visitations and various meetings. We are at a major turning point now...we are confident we are in the Hands of God and with His Strength we will be-MORE THAN CONQUERORS!

We know we are not alone in this battle. It feels like it though, being in this

 rather unique situation how it has placed us in a  hard place financially.

Our hope is just to help (no matter how minuscule it may be)anyone who may be suffering with Lyme.

Brad and I would love to pray for you. You can leave your request in a comment below. We promise we will pray.

 I wrote this in response to the disability denial and many not understanding why, suggesting we get a new lawyer or that we try again. We were warned that it would be a miracle to get disability with having Lyme, from what our doctor said: "it is rare!"

GOOD READING:

1.)  http://www.canlyme.com/apr1903.html  Rd. this patient's story and the research discovered.

2.) http://articles.ky3.com/2012-04-05/chronic-lyme-disease_31296702  Chronic Lyme hard to discover. This individual spent $4,000 for blood tests and other and it resulted in nothing. Yet, was diagnosed with Chronic Lyme.

3.) http://lymedisease.org/news/touchedbylyme/ssdi.html This lawyer is an advocate for Lyme's Patients and specializes in disabilty and appeals. [We are going to contact her!]