.

God Sees You, Even If You Can't See Him

noreply@blogger.com (Marti) — Fri, 27 Jan 2012 04:33:23 PST

Job couldn't see God, behind, to the left or to the right. he couldn't see God at all. However, God saw Him. Job, like a blind man navigating his way with the use of a simple cane, relies upon the unseen hand of God to lead him through the darkness of his suffering. Faith in God is the cane that guides his way.

Do you ever feel like Job? Feel like you are treading through muddy waters in the middle of a dense forest where you can't see what is coming at you beyond the bushels of trees? Do you struggle to get your out of the muddy water and onto solid ground? Through the pain, anxiety, fear and anger, it is often difficult to see God?

I often feel like there are so many things coming at me all at once:

finding time to treat the whole body with various protocols requiring a mountain of supplements & medication
trying to get through 8 hours of work just to come home and go straight to bed
finding time to detox with a sauna and exercise for oxygen therapy and green drinks
15-30minutes of exercising a day after a long day of work and when I am don't feel well
scheduling weekly EVOX, LED, acupuncture or chiropractic adjustments in addition to regular doctors visits that seem to come every other week.
completing lab tests, etc.,
trying to distract myself from the pain and worries of this illness
submitting insurance claims and dealing with the insurance company to despite denied claims
finding ways to make extra money to pay for the medical bills.

These are just some of the things we may deal with when living with a chronic illness, and it is often hard to see beyond all the chaos. Even when you feel blinded and can't see God, HE SEES YOU. He knows what you are going through. I believe God sees me. I believe that He desires for me to be well. I believe that he has lead me on this journey for a reason, even though I often battle the question of, "why me?" Keep talking to Him even though you don't feel He hears you. If you need to, go in your closest and scream to the top of your lungs, "Heal me, Lord! I know it is not your desire for me to be ill".

Some would argue the fact of God's will. I believe in God's will, but I don't believe that God's will is for us to be sick. All good things come from the Lord. Illness is not good, so it can't come from God.

“Be still, and know that I am God" God is a lover and a healer. He loves you. He loves me.

He wants us to be well.

Do You Have Bladder Pain (Interstitial Cystitis)?

noreply@blogger.com (Marti) — Wed, 25 Jan 2012 04:15:04 PST

Do you have bladder pain? Wonder why? What is causing it? I thing we all do. We wonder if it is the Lyme in our bladders, the pelvic floor disfunction, the inflammation, bladder endometriosis, nerve entrapment or is it something entirely different?

I have had bladders pain since 2009.My goal is to beat strengthen my immune system and to beat this infection. I have tried antibiotics, homeopathy, naturopathic treatments, and have recently added herbs and acupuncture to my protocol. . I have seen a little improvement with homeopathic medicine. My bladder doesn't hurt as much, but my pelvic floor area continues to experience pain. My mind is always running full circle trying to determine what's the cause. It typically runs full course:

"I know have Lyme that can effect the muscle groups, including pelvic floor . . .The Lyme has caused a Bartonella-like infection which many ICers have . . .The antibiotics don't seem to be helping . . . so is it due to my pelvic floor disorder? . . .Is the inflammation due to the infection or is it due to irritated PF muscles?. . . Should I try pelvic floor therapy again? . . . How long should I be on homeopathy? . . .Is the pain due to nerve problems? . . .What can I add to my protocol specifically for bladder healing?" . . . and on and on, until I am right back at, "I know I have an infection, let's get rid of this first." It can be emotionally exhausting.

I go through this every day, many times a day. Honestly, I don't know the answer to the problem. Everyone is different and not everyone is going to respond to the same treatments. My advice for those in this predicament is to keep moving forward with various treatment; one day we will hit upon what works for us. Keep on keeping on. There is a solution to this!

Pins & Needles: Acupuncture For Lyme & Interstitial Cystitis

noreply@blogger.com (Marti) — Wed, 11 Jan 2012 04:52:39 PST

So, where do I find myself now? On a bed wearing pins and needles. Why this route? The best I can tell you is that I felt pulled to do this. My DO recommended I see him as he has as she puts it "Hands given by God". I put it off for more than 4 months, but the thought keep creeping back into my head. Will lead to full healing? I can't tell you, but I have hope.

I have come to the conclusion that one treatment will not heal your body. I believe that various treatment (both conventional and alternative) must be used together to beat this disease, not just one. Why do I believe this, because I think everything I have done has helped "a little". The homeopathy helped relieve just a little of the pain and rid my body of additional infections according to the EDS (Electrodermal Screening), the antibiotics and Bulooke are fighting my Bartonella infection, naturopathic treatments helped in the healing of my digestive system, but nothing cured it all. I have just recently started the Cowden Protocol and acupuncture, so I am unable to give you feedback at this time. But believe me, if one of these work, I will let you know!

I have heard from some of my Lyme friends over and over again that acupuncture helped them. The belief behind acupuncture and chinese medicine is that we have an energy that is stagnant. When the energy is not moving as it should, then we are susceptible to all sort of ailments, including a breakdown of your immune system. What my doctor (chinese acupuncturists) found was the following:

My digestive system is not working properly- go figure! Nothing new.
Water is not being held where it needs to be; my body is not using the water I intake effectively.
My muscles in my bladder are not functioning because of the stagnant energy.

What should you expect a traditional chinese acupuncturist to do? They look at the creasing in your tongue. I had my tongue hanging out for at least 4 minutes as he drew it on a paper and then wrote down chinese herbs (in chinese handwriting which is not very helpful to me as I don't read or speak chinese).

Then, he mixed herbs which took him about 30 minutes to an hour to do.

This is not the first time I have tried acupuncture, but it wasn't from a traditional chinese doctor. So, I thought I would give it a try. What can I loose? Oh yes, money. I can loose lots of money.

Well, ladies and gentlemen, let's give it a month to see if I see any improvements, which is all I am asking for at this time. After a month, Will and I will (wow that's confusing-to many "wills" in the sentence) re-evaluate whether to continue treatments.

Does it hurt? Not for long. It actually feels good once they are inserted.
You then relax for 20 minutes to allow time to get the energy flowing.
You should feel tingling in places. If not, I would question his/her
effectiveness in giving this treatment.

Update for My IC Friends

noreply@blogger.com (Marti) — Wed, 14 Dec 2011 04:18:06 PST

Under the supervision of Ruth K., I am on Biaxin (Bartonella), Plaquenil (Protozoan), and Bulooke (Biofilm) for my Interstitial Cystitis really believed to be a result of the Bartonella infection. Yes, I prefer the natural route, but at this time, this is the route I have chosen. Hemobartonella was found through a bloodstain test through Fry Labs. The only lab after two years to do so.

I was on my meds and things were going well (meaning I wasn't seeing negative reaction to the meds), but after two months of taking the meds, I began getting stomach aches early in the morning and in the middle of the night. After speaking with Ruth, we decided to give my digestive system a break and lay off for a week. She requested that I give myself a coffee enema (I know, TMI), at least once a week, since it pulls the toxins format the bloodstream. She feels that my constipation (Yes, again, TMI) may be due to the toxins embedded deep into the tissue of the colon and feels enemas will help.

After a week of rest, I began experimenting with the meds to figure out which one is contributing to the stomach pain. I know it is not the Biaxin as I took it by itself and no stomach ache. I am weary of the Bulooke, but took it twice yesterday and didn't have as much stomach pain as I was having. Tonight, I will test out the Plaquenil. I am hoping that I find that my stomach is ready for the meds again, since I have been off for about two weeks.

I would hate to get this far into my current treatment and then have to quit, so I am determined to figure out a solution if I can. She really wants me to stay on the Plaquenil as it is one of the only things that will fight protozoan. She hasn't found natural remedies to help with this; however, if I continue to have issues, we may move to the Cowden Protocol.

These little buggers are driving me crazy!!! I wish my bladder wasn't so warm and cozy for them. I would think knee pain, elbow pain, neck pain, etc. would have to be better than constant bladder/urethra pain.

50 Ways to Encourage a Chronically Ill Friend

noreply@blogger.com (Marti) — Mon, 12 Dec 2011 14:45:40 PST

50 Ways to Encourage a Chronically Ill Friend
By Lisa Copen,
Founder of Rest Ministries

CBN.com – "A good friend is a connection to life - a tie to the past, a road to the future, the key to sanity in a totally insane world." —Lois Wyse

Ask, "What events in your life are changing and how are you coping with the changes?"

Understand that she lives in a constant state of making decisions for which there is no guarantee that she is making the right choice.

Put meals in disposable containers and attach a note saying "This doesn't need to be returned."

Add stickers to envelopes for a cheerful touch.

Arrange for your friend's kids to have a night with your children.

Don't make a person into a project.

Ask, "Would you be willing to talk to a friend of mine who has recently been diagnosed with a chronic illness and offer her some encouragement?" It makes one feel good to know that her experience can offer someone else hope and that God still has a purpose for her life.

Wash his car and put a little note inside for him to find later.

Remember important anniversaries, both the good and the bad. No one else will.

Ask, "Do you want company the day that you wait for the test results? I could come over for a couple of hours."

"No matter how little you have, you can always give some of it away." ~Catherine Marshall. Just listen . . . until it hurts to not say anything. And then listen some more.

Ask her, "How do you feel God is working through-or despite-this illness in your life? I'm interested."
Ask, "What do you wish people understood about your illness?"

Don't make her feel guilty about things that she cannot do.

Treat her to a gift of movie rentals via postal mail through a service ($7-15 a month).

Ask, "Would you be comfortable with having your name on a prayer list, so that others can pray for you?" Don't assume.

Instead of saying, "I will pray for you," say, "I'd like to pray for you right now, if that's okay."

Mop the floors.

Ask if she would be interested in writing something for the church newsletter, maybe even about the subject of living with chronic illness.

Buy a brightly colored umbrella as a gift.

Ask, "Do you have an errand I can run for you before coming over?"

Ask her to do spontaneous things, like go to a concert in the park, or just for a picnic. She may be more likely to participate since she knows if it's a good day or a bad day.

Don't say, "So, why aren't you healed yet?" or "I wonder what God is trying to teach you that you just aren't learning!"

For a unique gift, provide brightly colored paper plates, napkins, and utensils in a gift bag with a note that says "For when you don't feel like doing dishes."

Get her a pretty box to keep all of her notes of encouragement. Remind her to get it out and read things when she is feeling down.

Be her advocate. If you are at an event and walking/seating is an issue because of her disability, ask her if she'd like you to take care of it. If she says you can, be firm but not rude. Don't embarrass her by making accusations of discrimination or by making a scene.

Ask, "Would you be interested in a prayer partner from our church?"

Purchase matching coffee mugs for you and your friend, and then commit to pray for one another each morning while using them.

Say, "While you're in the hospital I'd be happy to take care of your pet."

Don't tell her about your brother's niece's cousin's best friend who tried a cure for the same illness and. . . (you know the rest).

Find out which charity is most important to her and then give a donation in her honor.

Ask, "What are your top three indulgences?" and then spoil her soon.

Hold the door open for her. They are heavy!

Don't tease her and call her "hop along" or "slowpoke." Comments you mean in fun can cut to the quick and destroy her spirit. Proverbs 18:14 says, "A man's spirit sustains him in sickness, but a crushed spirit who can bear?"

Say, "I know you must need someone to just vent to occasionally. I may not fully understand how you feel, but I'm here to listen anytime."

Ask your church youth group to come over and clean up the yard during seasonal changes.
Don't ask her, "How are you able to make it financially?" If she wants to share a burden she will.

Ask, "What would you advise me to look for in a new doctor?"

If your friend has a disabled parking placard and you are driving, allow her to tell you where she wants to park. If she's feeling particularly good that day, she may not want to park in the "blue space." Don't be disappointed that you'll have to walk farther.

Don't gossip about others. She'll wonder what you say about her. "Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen" (Ephesians 4:29).

Proverbs 25:11 says, "A word aptly spoken is like apples of gold in settings of silver." Be kind, gentle, and respectful.

Accept that her chronic illness may not go away. If she's accepting it, don't tell her the illness is winning and she's giving in to it.

Don't say, "Let me know if there is anything I can do." People rarely feel comfortable saying, "Yes, my laundry." Instead pick something you are willing to do and then ask her permission. Try the coupon in back!

Ask her to share her testimony at an event.

Buy a magazine subscription for her on her favorite topic.

Plant a rosebush to view from a window.

Understand that you don't need to know all of the details about the illness in order to be helpful. He'll share with you what he's comfortable with you knowing.

Don't ask, "Why can't the doctors help you?" or insinuate that it must be in her head. There are millions of people who are in pain with illnesses that do not have cures.

Avoid having gifts be "pity gifts." Just say, "I saw these flowers and their cheerfulness reminded me of you."

Send tapes of church services your friend misses to her with a copy of the bulletin and a note.
If she doesn't have a cordless phone, get her one. Phone headsets are also nice.

City Council Meeting

noreply@blogger.com (Marti) — Fri, 09 Dec 2011 09:42:21 PST

We have been fighting Chesapeake Gas to keep them from building a compressor station 1200 feet from my house. As may of you understand, I am concern for my health and, as hard as it is to treat Lyme and its confections, I do not want another barrier to my road to recovery. These units are dangerous not only to those that are healthy, but could be detrimental to those who are ill, due to the level of emissions that these systems produce.

As a concerned citizen and neighborhood resident, I spoke at a City Council meeting requesting the City council to deny rezoning for this unit. We won, but it may not be over as the company can come back in 12 months and begin the process of requesting rezoning all over again. Let's pray they don't.

CITY COUNCIL MEETING Our hearing starts at 1:03 minutes.

Newspaper article: http://www.star-telegram.com/2011/12/08/3581971/fort-worths-mallard-cove-shows.html?storylink=addthis#

We Found It! (Bartonella & Homeopathy)

noreply@blogger.com (Marti) — Wed, 23 Nov 2011 04:45:12 PST

Bartonella is a bacterium that is most often referenced with infections received through cat scratches and/or bites; hence, why the herbal remedy for this nasty bacterium is called Cat's Claw, better known as Samento. But it has been found that ticks, fleas, misquotes and gnats can transfer this infection along with Lyme.

I mentioned in an early post (click here) that Fry Labs in Arizona was able to detect my co-infection through a blood DNA stain, when no other testing had. I have Bartonella or a Bartonella-Like Organism (BLO).

Prior to reaching out to my current doctor who practices in Virgina, I was on a year of homeopathy. Testing is done through electrodermal testing and tests for the frequencies of various bacteria, parasites, food sensitivities, viruses, etc. For Americans that are conditioned to seek the traditional medical treatment of tests and pharmaceuticals, anything outside the box of traditional medical practices is hard to grasp. I was very skeptical, but hopeful as well, when moving towards homeopathy. Surprisingly, I have been amazed at the accuracy of the testing over the past year. The test has picked up on the frequencies of Lyme, Chlamydia pneumonia, parasites, among other infections.

During my visit with my homeopathic doctor in September, I was disappointed as the electrodermal testing did not show that I had a BLO infection. I knew that I did as I had been tested through Fry Labs. After the electrodermal testing, I pulled my testing out to show her what the test results showed. She was perplexed and thought it might be that she didn't have the frequency of that specific BLO. She gave me treatment for it anyway.

Yesterday, a month and a half after my previous visit, we were able to detect Bartonella Henselae in my liver, gallbladder, bladder, and urethra-- all the areas where I am currently having pain and discomfort. She was surprised to see it since it had not been detected during my previous visit. What we suspect is that the Bulooki enzyme that I am using to eat away at fibrinogen has led to destroying the biofilm protecting the BLO. Now that the BLO has been released, the frequencies can be detected. She is now looking into the possibility of using Bulooki to make sure that there is no hidden bacterium. So, for those currently seeking electrodermal testing, this is something to consider.

Some may think I am nuts for going this route, but I truly trust this doctor. She is a christian and was cured from Lyme through homeopathy, when nothing else worked. Being a type-A personality, simply telling me that something works is not enough to convince me. I have to see it for myself, and I need it to be proven. The fact that the testing has always correlated with the aches and pains (note that they change from month to month) has been very encouraging to me.

I always have her complete the testing before describing my current symptoms, and sure enough the testing and symptoms are always in alignment. Amazing to me! I do think I have gotten somewhat better on homeopathy and that it has had and continues to have a part in my healing process. I will continue to go until I see otherwise.

Why I Bought An Infrared Sauna.

noreply@blogger.com (Marti) — Sun, 20 Nov 2011 06:44:22 PST

You can even read, crochet, or hold ice each
of your hands while you are in your oven!!

One of the best things we can do to combat toxin released by Lyme and other confections is to sweat. There are three ways we detox: (1) Urine and Stool (2) Lungs (3) Skin. We are encouraged to exercise everyday, but many of us don't have the necessary energy to exercise to the point that we sweat. For me, I get up at 5am to get to work and return home at 6pm-that, which does not leave me with the energy to exercise as I deal with fatigue. Sweating is one of the best things we can do to help in our detox. This is why I purchased a portable Infrared Sauna, which I placed in my garage. Not too keen on having a sweat box in my house. I purchased mine on bay for $150.00, new and in the box. It was simple to construct; it took me about 5 minutes.

After sitting in the box for 30 min-1 hour, I feel good for a short time. It seems to calm me down and lift my anxiety for a while. I have only been using it for a week. For now, I try to used it every other day as I don't want to detox too fast. I will hopefully work up to using it everyday. Will it help with my symptoms? I don't know, but I am willing to try. What I do know is that whether you are ill or not, sweating is one of the most important cleansing systems we can take advantage of.

If you choose to go this route, drink a lot of water afterwards to replenish the water you lost. We don't want to become dehydrated.

What are the health benefits of spending time in a far infrared sauna?
Causes weight loss (without having to lift a finger)
Helps treat cellulites
Improves your immune system
Improves your strength and vitality
Helps cure several skin diseases like eczema, psoriasis and acne
Strengthens the cardio-vascular system
Helps control your blood pressure
Detoxifies your body
Gives you more energy and relieves stress
Helps treat burns and scars
Relieves pain (joint pain, sore muscles, arthritis)

Here is a short video on how far inferred saunas work:

Seeking Graphic Designer

noreply@blogger.com (Marti) — Fri, 28 Oct 2011 05:25:52 PDT

The North Texas Lyme Support Group (NTX Lyme Support) is seeking a graphic designer to help revamp our website: http://ntxlymesupport.blogspot.com/

We would like it to look more professional. We are seeing to at least change the graphic at the top, or I am willing to take any suggestions that may make our website more user friendly. If you are interested in volunteering to help us, contact paschalltwin@yahoo.com. Any assistance would be appreciated.

noreply@blogger.com (Marti) — Thu, 27 Oct 2011 03:48:31 PDT

The International Lyme and Associated Diseases Society (ILADS) Conference is broadcasting live video of it's conference on Friday Oct 28 - Saturday Oct 29.

You will learn about some of the latest approaches for treating Lyme disease. Here is where you can see a schedule and live video of the conference on their website:

Click Here To Visit ILADS Website.

To View Live Streaming Presentations, click the "READ MORE" below.

OCT28Fri	Borrelia Infections- diagnosis and treatment — Joseph J. Burrascano, Jr. MD 10:30am-11:15am [7:30am-8:15am pacific]

OCT28Fri	Management of Ixodes scapularis bites — Elizabeth Maloney, MD 11:15am-12:00pm [8:15am-9:00am pacific]

OCT28Fri	New Research on Lipid Replacement Therapy to improve mitochondrial and membrane function in complex infections — Garth Nicolson, PhD 12:00pm-1:30pm [9:00am-10:30am pacific]

OCT28Fri	Coinfections And The Opportunistic Groupies — Christine Green, MD 1:30pm-2:15pm [10:30am-11:15am pacific]

OCT28Fri	Lyme Disease & Babesiosis: Updates on Diagnosis and Treatment 2011 — Richard I. Horowitz, MD 2:15pm-3:00pm [11:15am-12:00pm pacific]

OCT29Sat	Cutaneous Mimics, Don t Be Fooled — Marcus Conant, MD 8:30am-9:00am [5:30am-6:00am pacific]

OCT29Sat	The Qualitative and Quantitative Implications of an Inadequate Diagnostic Test for Lyme Disease Patients — Sarah Buchman 9:00am-9:10am [6:00am-6:10am pacific]

OCT29Sat	The Updated ILADS Clinical Guidelines — Daniel J. Cameron, MD 9:30am-10:00am [6:30am-7:00am pacific]

OCT29Sat	Overview of Integrative Patient Care in Tick-Borne Diseases — Steven Bock, MD 10:30am-11:15am [7:30am-8:15am pacific]

OCT29Sat	Identifying environmental Illness and Mold exposure in patients with persistent Lyme Disease — Lisa L. Nagy, MD 11:15am-12:00pm [8:15am-9:00am pacific]

OCT29Sat	Food allergy, intolerance and candida — Morton Teich, MD 1:30pm-2:15pm [10:30am-11:15am pacific]

What You Can Learn Through A Blood Analysis

noreply@blogger.com (Marti) — Wed, 26 Oct 2011 04:46:12 PDT

Blood analysis is very helpful in distinguishing healthy blood from ill blood. If anyone in the DFW area is interested in having this done, I know a doctor that does this type of blood analysis. We were able to see cocci bacteria in my blood as well as some coagulation. My red blood cells were dying more quickly that they should have been. Later, I found out that the cocci bacteria is actually Bartonella or a BLO (Bartonella-like infection) which was identified through a blood stain by Fry Labs in Arizona. If I were to have to choose which one, I would definitely have the Fry Labs done. But if you are wanting a simple blood analysis, contact Dr. Kari Rollins in Fort Worth. Let her know I sent you.

Here is what my blood looked like through the Fry Blood Stain test.

The first one show how much biofilm exists in my blood. My doctor helped me understand that this is not the worst she has seen. The second shows biofilm (arrow pointing to it) and little cocci bacteria inside (darker blue/purple). Fry labs were able to count up to 21 bacteria in the biofilm, which is as far as they con. This signifies how much of the bacteria is being protected by the biofilm. Cocci bacteria can also be seen attaching itself to my red blood cells. Healthy red blood cells should be round, but as you see mine are not round, but irregularly shaped.

What is Lyme Video (IDSA)

noreply@blogger.com (Marti) — Mon, 24 Oct 2011 05:03:36 PDT

Shame on the IDSA! (see video below) Yes, a course of short-term antibiotics will help someone who has discovered their initial bite, but a 4-week antibiotic treatment is not effective for those who have had it for months or years.

If one chooses to use antibiotic therapy and has had Lyme for months or years, it should be given long-term to eradicate the infection that has found its way into the muscle & joint tissue throughout one's body. It can be found in the heart muscles, bladder muscles, brain tissue, stomach & colon, eyes, throat, etc. Lyme loves muscle and can live anywhere there is muscle. Other's have found relief with homeopathy, rife machines, herb treatment such as the Cowden Protocol, etc. However, you cannot eradicate the Lyme until you address all other co-infections: Bartonella, BLO's (Bartonella-Like Infections), Babesia, mycroplasma, parasites, Ehrlichia, etc.

This IDSA video falsely educates the public on Lyme, making it seem as if treating Lyme is as simple as treating a cold and that having Lyme is "no big deal". Then, why are so many Lyme patients not well after four weeks of antibiotic therapy? Why do so many respond to long-term antibiotic therapy. Explain this, IDSA.

To View Video Click Here.

Bad Days, Better Days

noreply@blogger.com (Marti) — Fri, 14 Oct 2011 05:53:44 PDT

In all honesty, I often struggle with whether I am going to beat this disease. Then, other times, I am determined that I will. I have a vision of the day that I wake up and realize that it is all over. The sun is beaming all around me, and I feel light and happier that I have ever been. The problem is that I don't know how valid my vision is and if it is valid, how far ahead of me that day is.

Yesterday, I was having a bad day, or shall I refer to it as a "challenging day" in attempt to change my perspective on it? But no matter how you refer to it, it just STUNK! My bladder hurt from the time I got up to the time I fell asleep. I was questioning my treatment and diagnosis, wondering if I possibly have a BLO (Bartonella-Like Organism) or if I truly have Bartonella. So of course, I went on the internet to get a better idea and understanding. The problem is that I often get more frustrated due to all the conflicting information on the web. LLMD doctors don't often agree how to treat Lyme and co-infections. There is a book recently published, the Top Ten Lyme Disease Treatments, that shares how ten doctors each treat their Lyme patients. There is even information on the web of how to treat Lyme with bee venom. Hey! Don't put it past me to try it! The physicians who use this treatment make it sound promising, but then, doesn't it all?

I try to explain to my loved ones that I have bad days, but I have better days, too. Unfortunately the bad days often outweigh the better ones, but when one of those "better days" comes along, I thank God for it. What I struggle with is that I never have a "good day". My good days would be a healthy person's bad day. A "good day" to me would be very little or no pain and having normal bladder function. . . not worrying if I am going to be able to urinate. . . not behaving as if I am feeling well when everything in my body is screaming. People don't often see on the outside the anguish I feel on the inside. This young vibrant spirit trapped in this broken, painful body.

Everyday, I wake up and hope that the day will be a better one. There is always hope for a better day, and at the end of each day, I have to continue to turn to God and hope for many "good days" ahead.

Need A New Perspective?

noreply@blogger.com (Marti) — Fri, 14 Oct 2011 05:51:04 PDT

When I am feeling down and my life seems out of control because this disease seems to be dominating my life, music helps give me a different perspective, if only for a moment. It is as though God is speaking to me through the song. My long-time, college friend often sends me songs of inspiration. Here is the latest.

Song of Inspiration

noreply@blogger.com (Marti) — Sun, 09 Oct 2011 07:28:50 PDT

When dealing with Lyme or other chronic illness, we can often find ourself yearning for the days when we felt healthier and vibrant; we begin to wonder if we will ever get back to that place.

Music is very healing, and can give you hope and a new perspective. Stronger is one of those songs. My friend Donya, who continues to stand by me no matter how much I cry & complain to her about my condition, sent me this song. She is relentless in trying to encourage me through this journey. She loves me unconditionally! Thanks, friend. Take a moment to listen.

Probiotics & Antibiotics Taken Together

noreply@blogger.com (Marti) — Fri, 07 Oct 2011 05:14:19 PDT

I have always noted that Bartonella infections result in a wide variety of symptoms such as fever, headache, anxiety, fatigue, swollen glands. But, did you know that the infection can be carried in your blood/circulation system without these severe symptoms? And, who knew these cute little cuddly kittens that I played with as a child could infect me with such a unforgivable infection.

Rarely, is it mentioned by doctors that Bartonella can cause Interstitial Cystitis (Painful Bladder Syndrome), yet it can and often does. My doctors and I have always been suspicious of Bartonella causing infection in my bladder. Bartonella is very difficult to culture and impossible to culture in a agar culture which is used by most labs; therefore, doctors have a difficult time identifying Bart. through these measures. A blood stain from Fry Lab in Arizona was the only test able to detect Bartonella blood infection in my.

Now that I am on long-term antibiotic therapy for a Bartonella (cat-scratch fever) infection, and since I have suffered from systematic candida in the past, it is important that I take every measure to keep the candida colonies from flourishing. Yesterday, these symptoms started to reoccur after having had them under control for over a year. It's time to build my forces!

One way to manage candida while on long-term antibiotic therapy is to use high-intensity probiotics. I take HCL which provides me with 125 billion good bacteria a day. Also, there is a fermented probiotic called Dr. Ohhira’s Probiotic which can be purchased at Iherb.com. It can be costly, but the alternative is not appealing. As antibiotics kill the "bad" bacteria, it also kills the good needed for effective digestion and a healthy immune system. But, the question always remains: When is the best time to take probiotics in conjunction with antibiotics?

If you take probiotics too close to the antibiotic, you will be wasting your money and effort. The probiotic is used to replenish good bacteria, but if taken too close to an antibiotic, the "good" bacteria provided by the probiotic will be eradicated along with the "bad". The goal is to allow the antibiotic to kill the "bad" bacteria, while using probiotics to replenish the "good".

Here is what health media says:

According to Livestrong, you should take your probiotic 2-3 hours after your antibiotic. This will give the antibiotic time to kill microbes before you take healthy microbes you want to retain.

eHow states that "taking a dose of probiotics twice a day, preferably at least a half hour, or more, before eating is helpful. Also, take doses a couple of hours apart from taking antibiotics doses.

Associated Content writes that "it is important to take a probiotic after therapy".

There is a consensus among health media that it is important to take probiotics (1) to help the good bacteria re-flourish (2) with high-intensity (3) 2-3 hours after your probiotic. (4) in two doses a day.

So, if you are on antibiotic therapy, go grab a couple of bottles of probiotics from your local health-food store or online. It will make all the difference in staying healthier during treatment.

Lyme Patients, Speak Up Now!The IDSA Is Revising Its Lyme Guidelines And Patient Viewpoints Matter

noreply@blogger.com (Marti) — Thu, 06 Oct 2011 03:54:20 PDT

The treatment guidelines of Infectious Diseases Society of America (IDSA) are more than 5 years old. That means they will be taken off the National Guidelines Clearinghouse in January. It also means that the IDSA is now revising those guidelines. According to the Institute of Medicine, guideline developers must consider patient values and preferences to be considered trustworthy. Our last survey found that 80% of patients would not choose to be treated under the IDSA guidelines. So patient trust in IDSA Lyme treatment guidelines a big issue. But when was the last time the IDSA asked you what you valued or what you preferred in the treatment of Lyme disease? The answer is: NEVER. It’s time we do something about that. We are conducting a survey to find out what you think is important about treatment options, choices, risks and benefits. Our last survey drew over 4,000 responses. Let’s do it again and remind the IDSA that patient values are central to treatment guidelines!

To participate in this survey, click here. Or visit lymedisease.org

Your responses will be treated with confidence and at all times data will presented in such a way that your identity cannot be connected with specific published data. The survey should take 5-8 minutes. Note that once you start the survey, you will need to fully complete it. (You cannot save it and return to it later.)

In 2009 prior to the IDSA hearing, we wanted patient voices to be heard and conducted a survey that drew over 4,000 responses. It ended up being the largest survey of Lyme patients ever conducted in the United States. The results of that survey were published in Health Policy in a study by Johnson, Aylward and Stricker and summarized in another blog post of mine. Health Policy is a highly regarded peer-reviewed journal that explores health policy issues.

The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org (formerly CALDA). Contact her at lbjohnson@lymedisease.org.

Original post on LymeDisease.org.

We Are Beautiful!

noreply@blogger.com (Marti) — Sun, 02 Oct 2011 06:28:37 PDT

The most beautiful people we have known
Are those that have known defeat
Known suffering
Known struggle
Known loss
And have found their way out of the depths.

These persons have an appreciation
A sensitivity and an understanding of life
That fills them with compassion
Gentleness
And a deep loving concern.

Beautiful people don't just happen!

Elizabeth Kubler Ros

We must believe we will find our ways out of the depths.
But through those depth we have morphed into the most beautiful people.

New Evidence: Why I Haven't Responded To Treatment (Lipoprotein A)

noreply@blogger.com (Marti) — Fri, 30 Sep 2011 05:23:40 PDT

My current doctor is a specialist in IC (Interstitial Cystitis) as she had it for 7 years herself before being fully cured. I spoke with her yesterday as we had a hereditary test done to see if there were any factors in play that would cause my lack of response to treatment--I have been through all types of treatment, but have yet to see improvement in my IC. According to the tests, she may have found the dynamic that may have caused a lack of response in treatment in the past: lipoprotein A. Lipoprotein A is an fat that is often seen in many patients with high cholesterol. She also referred to it as the "bad guy". It is used in the body alongside fibrinogen to create the dreaded biofilm. Most often than not, if one of her patients in not responding to treatment, they find lipoprotein A in play. Once she can get the Lipoprotein and the fibrinogen counts lowered, her patient seem to respond better.

Let me explain how biofilm is formed in the body.

Fibrinogen + Lipoprotein A= Biofilm

If you high levels of Lipoprotein A and fibrinogen, it is the perfect recipe for biofilm to be born. The fibrin will attach to the lipoprotein A and "whala"--biofilm. Just as you have bacteria in your mouth, you have biofilm around you gum line which protects the bacteria and allows it to survive any attempt to remove it. You also have little pac-men that run around your body eating up fibrinogen. I have low levels of these pac-men, therefore not only is my body producing too much fibrinogen, I also lack the forces to rid my body of it.

There are two schools of thought on how biofilm:

(1) One belief is that your body creates the biofilm to protect your body from the bacteria.

(2) Another, is that the bacteria uses the biofilm to protect itself from your immune system.

No matter which you believe, it all comes down to understanding how biofilm is created, and finding ways to destroy it.

My treatment will include Balooki, which will:

(1) Eat away at the fibrinogen and poke holes in the biofilm so that the antibiotics can reach the bacteria.

(2) It will hopefully lower lipoprotein levels.

If the Bulooki doesn't work in lowering the lipoproteins, I will then be placed on Niacin (Vitamin B3) which will destroy the lipoproteins.

I pray everyday for healing. I know that God hears me.

Shame On You IDSA

noreply@blogger.com (Marti) — Mon, 26 Sep 2011 04:10:14 PDT

Watch this video: IDSA : What is Lyme Disease? Video

The IDSA and CDC continue to inform the public that Lyme disease is "no big deal" and "easy to treat" with a regime of 4 weeks of antibiotic. What they don't mention is that it is treatable only if you discover you have been bit within weeks of your initial bite. The issue that we as Lyme patients are fighting it that if you don't know you have been bit and don't receive treatment the disease becomes chronic and cannot be eradicated with short-term treatment. And if you have had it for years without knowing it, it could take up to 1-2 years of treatment to get the infections under control. I mention infections because if you have Lyme, you most likely have co-infections such as Babesia or Bartonella. The tick that bit you may be carrying more than one bacterium.

A quote from a blogger in response to this video, Touched By Lyme:

"What planet do these IDSA people inhabit? If their 14-day protocol worked, untold thousands of Lyme patients would be as peppy and (apparently) healthy as that blond in the video. But THEY’RE NOT! They are sick and in pain. They may have tremors and seizures and difficulties swallowing and digesting food. They can’t sleep at night. Some have allergies and chemical sensitivities. Sometimes they can’t get the right words out.

And what do you do, IDSA? You deny them treatment and instead offer a dippy little video saying Lyme disease is “no big deal.”

Two more questions, IDSA:

One, who in the world thought this video was a good idea? And two, how in the world do you live with yourselves?"

Being Chronically Ill Doesn't Give One Immunity of Manners

noreply@blogger.com (Marti) — Tue, 27 Sep 2011 09:25:43 PDT

I struggle with pain everyday. I sometimes hurt so bad that it causes my mood to flare, and it makes it very hard not to be "snappy" towards others. Most of the time, I do very well with holding my feelings at bay, especially when at work or in public. But, sometimes when I am in a worry mode or hurting immensely, I loose my manners with the ones closest to me. It's not that I don't love them, I truly do. I always apologize for being coarse, but when you are hurting and your body is on "fire", it can sometimes be hard for your manners to be polished. I would have to say that I am most always polite to coworkers, friends, acquaintances, etc. I make a point to be, even if I am have a extremely painful day.

Having said this, I recently had an experience with someone--we will call the person "L"-- who seems to be in a constant fury. I understand why--"L" is a Lyme patient as well. I truly feel empathy for all Lyme patients because I know how tough it is to live with this disease day-in-and-day-out. I realize that many have it much worse than I. However, for the simple reason that we are chronically ill doesn't give us immunity to exhibit manners and be polite and respectful to others. It doesn't give us the right to lash out our frustrations on everyone around us. We must find healthy ways to express the daily frustrations that go with mourning what our lives used to be, pushing through the pain, and dealing with the fears and anxiety that chronic pain can bring. Most who are chronically ill once had an active and vibrant life that is now lost. Now, we just live day-by-day, hour-by-hour within our "new norm". I try not to think back on my previous life as it causes me to yearn for that life again. Instead, I try--most of the time-- to keep myself busy and occupied with other things that I enjoy such as sewing. Unfortunately, my mind at this time is occupied with putting our house up for sale--not so enjoyable. :)

When angry, frustrated, depressed or anxious, as hard as it can be, we must find healthy ways to express ourselves. It isn't as easy as it sounds. It's actually very difficult. We must remember that it is not the fault of those around us, and we must treat everyone gracefully-- even if you don't "feel like it". Before raging out at someone, step back for a couple of hours and let yourself settle down before addressing the issue. Expressing yourself when you are in the middle of an emotional whirlwind won't effectively solve the situation. It may get you what you want, but it may hinder relationships. Sometimes, being quiet and giving yourself some time away from the situation is the best thing you can do for yourself and for others.

Antibiotics, Here We Go Again!

noreply@blogger.com (Marti) — Fri, 23 Sep 2011 05:42:09 PDT

Actually, I don't love antibiotics. I have been avoiding them for over a 1 1/2 years. But, because I haven't been able to get much relief from my IC with previous treatments -- 6th months of antibiotics to treat Lyme, naturapathic remedies, dietary changes, homeopathy. acupuncture, allergy shots, candida treatments, supplements, and the list goes on--I have sought out a nurse, we will call her RK, who treats primarily IC patients. She lives in Virginia and suffered from IC for seven years before she was able to get her symptoms under control. Thanks to Dr. Fugazzotto's findings of unidentified bacteria/protozoans, which can only be cultured in a specific broth culture, not through a typical agar culture that you would find at most labs, she was able to seek long-term antibiotic treatment and is symptom free now. Although, Dr. Fugazzotto is no longer with us, his studies and treatments for IC live on through RK.

One of the tests she requested that I have through Fry Labs in Arizona identiied that I have hembartonella and a protozoan of some kind which are co-infections of Lyme disease. Finally, someone was able to confirm the suspicions that I have bartonella. Of course, it has begun to enclose itself with biofilm. To help these little suckers out, I produce too much fibrinogen, which the body/bacteria use to create the biofilm, and my little packmen whose job is to circulate eating away the fibrinogen are becoming extinct. We need to lower my fibrinogen counts, kill the bartonella and protozoan, and increase my iodine which I recently learned is the bodies natural antibiotic.

So the plan is:
At least 6 months of Biaxin antibiotics specifically to fight the Bartonella.
Booluki enzymes to eat away the fibrinogen
Continue with Vitamin D drops
Plaquenil to kill the protozoan
Increase my iodine with Iodoral tablets
Lots of probiotics to fight the growth of candida
+ 20 other supplements a day

Oh boy! I have to keep up with this while working a full-time job, taking side jobs to raise medical funds, run the NTX Lyme Support group and putting our house on the market. My strength is going to have to come from God.

God teaching me in so many ways that I am not in control! I am learning to let go and let God! It is not easy. But, it can be exhausting trying to stay in control of everything.

Dr. Greg Lee: How Alternative Medicines Help to Reduce Lyme Symptom Flare-Ups After Surgery

noreply@blogger.com (Marti) — Tue, 20 Sep 2011 04:22:24 PDT

Have you seen scary monster movies? In these films, monsters are often seen as having slime dripping from them. This slime is gooey, sticky, and grosses out the people in the film. Real world creatures use slime to protect themselves.

How does knowing about slimy monsters help you to reduce symptom flare-ups after surgery?

Just like monsters in a movie, harmful bacteria in your body can produce slime
This slime is called a biofilm or plaque when it is in the mouth. On your teeth, it can feel like a film or it produces a weird taste. Lyme disease bacteria also produce and hide under biofilm slime. Unfortunately, people with Lyme disease often experience a flare-up of symptoms after surgery. This can be due to the immune system’s healing response affecting the activity of Lyme bacteria. Symptom flare-ups can also be due to other harmful bacteria being introduced into your body through surgery.

To read the full article, click HERE.

Scentsy Candles-Personal Fundraiser

noreply@blogger.com (Marti) — Wed, 07 Sep 2011 03:57:15 PDT

As you all may know how expensive treatments can be in treating Lyme and co-infections, I have spent enough money to put 1 kid through college. How we have been able to do it for three years is beyond my comprehension. I have been doing odd jobs here and there outside my full-time job to help with all the bills. All I can say is that God provided.

A couple years ago, I started selling Scentsy Products. It brings in a only small amount of money, but a small amount is better than nothing at all. If you, your friends or family members enjoy Scentsy products, consider purchasing them through me. You may go to my website and order directly, and Your order will be shipped directly to you. I know we are all strapped for money, due to our conditions, but if you already buy these products, I would greatly appreciate your business. Because these are wickles candles, and are warmed not by a heating element, but by a light bulb, these are great for the office, home, and assisted living centers.

Interested in helping out? Go to https://marthaboykin.scentsy.us/Home to order.
You may view the catalog at http://scentsy.net/products/scentsy-catalog.aspx

Questions? Email me at paschalltwin@yahoo.com, or if you wish, we can connect by phone. Just send me your phone number, and I will get back to you promptly.

Thanks for considering helping a fellow Lyme patient out!

Help for Lyme Sufferers | Fort Worth Weekly - News, Entertainment, Restaurants, Music

noreply@blogger.com (Marti) — Wed, 31 Aug 2011 15:00:28 PDT

Help for Lyme Sufferers | Fort Worth Weekly - News, Entertainment, Restaurants, Music