Under Fire

Physicians being under fire is not new in the Lyme literate world. I discovered this even before my  diagnosis.  When my husband and I were pursuing answers to this mysterious illness, we uncovered a doctor under investigation in North Carolina on our local news channel.  Shortly after my clinical Lyme diagnosis, we watched the documentary Under Our Skin (click to watch on HULU) including a Question & Answer session with the director of the film Andy Abrahams Wilson.  The documentary has several cases where Lyme Literate doctors were under fire during the time of filming.   This eye opening documentary shows how Lyme Literate doctors are scrutinized by others in the medical community which includes the medical board, insurance companies and other doctors.  

Skepticism is the questioning attitude towards knowledge, facts or opinions that are stated as facts.  Patients with Lyme Disease and doctors that treat chronic Lyme Disease face another problem in addition to the disease itself.  We face chronic skepticism.  As a patient, I am often questioned or criticized by the choices I make in regards to my treatments.   Physicians and nurses in the traditional medical community often raise their eye brows if I mention the words Lyme Disease.  People I know question whether I am choosing the right doctor and treatment because they've heard that Lyme Disease isn't this difficult to treat. My question is this:  How come every time I mention that I have Lyme Disease to someone they know someone  who "was very sick" or "almost died" from it if Lyme Disease is so rare?

It is such a puzzling phenomena that this illness doesn't seem to exist in the traditional medical community.  If doctors don't believe in the chronic form of Lyme Disease, why does the Red Cross have an official statement regarding blood donation?  The Red Cross states that they will accept persons with Lyme Disease if they were treated and the disease has been resolved and at least one year has passed.  However, those with the Chronic form of Lyme Disease are not eligible to donate (Official Red Cross Source). In addition, there are medical guidelines for joining the national bone marrow registry for Chronic Lyme Disease.  Fully recovered Lyme patients may register, but those with Chronic Lyme may not.(Official Bone Marrow Source)

If this chronic disease doesn't exist, then why is it listed that those with Chronic Lyme Disease can not donate blood or bone marrow?   It's common knowledge throughout the Lyme community that those with Lyme Disease should not register for organ donation in regards to transplantation. After intense research I have been unable to find an official statement regarding this; however, it seems to me that if scientists have found bacteria in the blood that is stored for donation (the Red Cross doesn't allow for donation for this reason) then it's shouldn't be a reasonable stretch that those with Chronic Lyme Disease should not donate their organs for risk of transmission.  It also seems to me that since our body are riddled with bacteria that it would compromise an already unhealthy individual. 

There is a disagreement between two sets of physicians. The physicians that are grouped with the Infectious Diseases Society of America (IDSA) state that Lyme is rare.  They suggest that Lyme only exists in the northern area of the United States of America and that Lyme does not need more than 28 days of antibiotics.  The physicians associated with the International Lyme and Associated Diseases Society (ILADS) have a vastly different point of view. The doctors are dedicated to the proper diagnosis and appropriate treatment of Lyme and its associated diseases (ILADS Source).  Did you realize that one tick bite can give more than one illness?  A few of these illnesses are Rocky Mountain Spotted Fever, Babesia and Bartonella, but there are many other tick borne diseases.  ILADS support physicians through research and education in order to advance the standard of care for Lyme and other tick borne diseases.  The two sides constantly butt heads.  One group benefits patients and the other group benefits insurance companies. 

The media spotlight of Lyme increases drastically in the spring time due to the rise of public awareness of ticks; however, the media speaks to physicians that have only been taught the basics of Lyme Disease.  The media just exposes the theories taught to them by IDSA trained physicians.   These are Lyme Disease myths, so to speak.  Generally, the public is told that Lyme is tough to get, but easy to treat.  They are told that a tick must be attached for several days in order for transmission to occur.  They also suggest that each patient with Lyme Disease will get a bulls eye rash.  The media doesn't even touch on the fact that the testing for Lyme Disease is inaccurate  The media outlets only have limited time to touch on Lyme Disease so the public is left uneducated when it comes to the endemic of the disease.  

The news stories on Lyme often infuriates Lyme patients. Media may share an "unusual" story on Lyme, but then in order not to cause widespread panic - they repeat that this is not the usual presentation and Lyme is hard to get and easy to treat.  The Lyme community maintains a level of excitement when hearing of mainstream media highlighting tick borne illnesses.   However, I always find myself a little leery as a viewer since I am typically disappointed with the lack of appropriate information.  They don't inform on other tick borne illnesses.  They also leave out recent theories that Lyme may be transmitted much quicker than previously thought, the inaccuracies of the blood tests and the Lyme communities thought that it may be transmitted by other vectors.  They rarely speak with true Lyme Literate Medical Doctors who can relay those facts or theories that Lyme patients presume are facts. 

The IDSA presents the community with guidelines for different diseases (IDSA Source).   The Center for Disease Control (CDC) follows the IDSA guidelines.  Insurance companies follow what the CDC thinks.  Therefore when doctors think and treat outside the IDSA Lyme Disease box, they are harassed by the traditional medical community.  Dr. Jemsek was the first physician I heard about being brought to the medical board regarding his treatment of Lyme Disease.  It was all over the news here in North Carolina.  Long story short is that Blue Cross Blue Shield (insurance company for those that do not know) did not think his treatments were appropriate for Lyme patients.  Unfortunately for his patients, our medical board agreed.  He lost his medical practice in North Carolina and subsequently suffered from bankruptcy trying to fight for his right to treat patients who chose his treatments.  He moved his medical practice to South Carolina and after a short while he was asked to leave.  He currently practices in Washington DC.

The only world renowned pediatric specialist in Lyme Disease, Dr. Jones, is another Lyme doctor under fire. Families come from all over the world to see Dr. Jones because of his mass knowledge of treating children with Lyme Disease.  His joy comes from making children better.  Yet, Dr. Jones had to fight for his right to treat.  Many physicians continue to fight for their right to treat.  Some of those had to give up practicing altogether which left their patients in dyer straights.  Currently, there is a new physician fighting for his right to treat.  This is scary my dear blog readers because, as I view it; the more LLMDs under fire, then the more difficult it is for those doctors that treat Chronic Lyme.  Dr. Jaller needs our support.  There was a petition going around on the internet, but it closed suddenly and no one else can sign it.  I must have signed it just in the nick of time.  After "signing," we could leave a note for those that read the petition.  My words were this:

"Physicians such as Dr. Jaller are needed in order to treat Chronic Lyme Disease and other tick borne illnesses. Too few practitioners are capable of properly diagnosing these tick borne illnesses. I was personally misdiagnosed for 12 years before being properly diagnosed in 2007 by a physician trained by ILADS. Dr. Jaller and Physicians like him should be commended, not condemned."

Friends, I urge you to support your Lyme Literate Physicians.  I encourage you to spread awareness of Lyme Disease. I have never had the opportunity to meet Dr. Jemsek, Dr. Jones or Dr. Jaller, but that doesn't mean their plight is any less important.  I also urge you to support each other.  We are all under fire all the time.  Skeptics are always out there.  Share this blog link with your friends.**  We should speak together now and I encourage us to speak louder than ever.  Our doctors should know they can count on our continued support and our Lyme friends* need to know that we all have their backs.  We need each other because there is strength in numbers.

"but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31

*I would like to personally thank all of my Lyme friends that had a hand in helping me in researching and proofreading this article. Thank you so much for your dedication to the Lyme community.

** When you share this link on your blog, let me know via comment so I can visit yours.  :o}

*** This was posted on Lyme Aware:

8th day of LDA Month

 We are packing, packing, packing.  In 10 days, we will be signing for our new home.  On the 18th, I will sign for us and will begin moving boxes on my own to the new house.  My husband will get home around 6pm so I'm sure we'll move some on the night of the 18th.  However, our big plans are to move everything out of the house and into our new home on the 19th.  It seems strange that we're about into the single digits!  Our house is a wreck.  I can't find anything. 

Now onto Lyme Disease Awareness Month.

Sarah Buchman is a 3rd year medical student at Georgetown University.  She decided to write her thesis on the research she did on the Economic Implications of Lyme Disease. She presented a summary of her works at the ILADS conference. I really enjoyed this little bit of video so I thought I would share it with you all on the 8th day of Lyme Disease Awareness Month. 

http://youtu.be/GIiTYAvylyU 

 

Day 4 of Lyme Disease Awareness Month

It is the fourth day of Lyme Disease Awareness Month.

I forget that there are many acronyms that we use daily that we don't even have to think about, but that those without Lyme or newly Lyme diagnosed won't know.   Some of those are LLMD, ILADS and IDSA

LLMD stands for Lyme Literate Medical Doctor.

There are two kinds of doctors that "treat" Lyme.  Some are IDSA and some are ILADS.  In essence, IDSA doctors don't know the truth about Lyme.  ILADS are Lyme gurus that know about Lyme and co-infections (ticks give other things than just Lyme).  So if you go see a doctor, you want to make sure that they are ILADS affiliated.

ILADS - International Lyme and Associated Diseases Society

IDSA - I like to "pretend" that it stands for I DON'T SEE ANYTHING or I DON'T SAY ANYTHING, but it  actually stands for Infectious Diseases Society of America.

The reason I'm sharing all of these acronyms with you is because I wanted to share with you a video from the most recent ILADS conference where LLMD Dr. Horowitz spoke on a co-infection (one of the other things that Ticks can give) Babesia (also known as Babesiosis).  Dr. Horowitz is a top notice Integrative LLMD.  He is PRO Lyme Treatment is in one of the best in the nation for treating Lyme Disease.  The video is about 11 minutes long and starts off with someone introducing Dr. H.  Dr. H speaks french for the first minute or so, but then switches to English.

I hope you enjoy the video and I hope you find it educational.

http://youtu.be/fRBXpOPMxNE

Lyme Prevention

Yesterday, I shared with everyone how to view Under Our Skin on Hulu. 

Today, I want to share with you important information regarding tick removal.

It is important to take the necessary precautions to help prevent any tick borne illnesses by using small pointy tweezers and grasping the tick as close to the head as possible and pulling straight out without yanking. It is always a good idea to keep handy a tick kit including small pointy tweezers preferably with attached magnifier, non-latex gloves, small pencil, alcohol prep pads, zip lock bags, tick identification and removal information card.

1. It is important not to touch the tick when removing it so avoid handling ticks with uncovered fingers. Use tweezers designed for removal. If you absolutely must use your hands, protect your fingers with non-latex gloves, plastic or even a paper towel.

2. Take the tweezers and place them around the area where the mouth of the tick enter the skin.

3. Using a slow steady motion, pull the tick away from the skin. Be careful not to jerk, crush, squeeze or puncture the tick.

4. After you remove the tick, place it directly into a Ziploc bag or other sealable container. Wash the area around the site of the bite with soap and water. Use an alcohol pad to disinfect it even further.

5. If possible, keep the tick alive for a month in case symptoms of a tick borne illness develop. Place the tick in a labeled, sealed bag with a lightly moistened paper towel. Label the bag with the date of the bite and the patient. For your own protection, tape around the Ziploc part of the bag to prevent the tick from exiting the bag.

It is important NOT to flush the tick down the toilet.  Some people suggest to do this, but ticks can survive a good flush AND the water.  If you want, you can send the tick to IgeneX for a Tick Test.   It's about 300 bucks for them to test 5 different diseases, but keep in mind that they only test for one strain and each disease may have  hundreds of strains. So even if your tick comes back free and clear from disease, it may not be. 

There is controversy about how long ticks need to be attached for transmission.  *most* sources say that it takes at least 24 hours of attachment to transmit a disease.  However at the last ILADS conference, they talked about a research study they had done with a Lyme infected tick and a mouse. They injected radioactive die into the bacteria and then the tick attached to the mouse.  Within some amount of time, the bacteria had already left the blood and crossed the blood brain barrier. It was something ridiculous like 30 minutes.

Yes Virginia, there is Lyme Disease

I saw my Lyme Doctor today. Have I said lately how much I love him? In a few months, we'll have been seeing each other for FIVE years. In that time, he's been to FIVE ILADS conferences. He told me at this recent conference he learned about the study that was done regarding a mouse and the Lyme bacteria. I'm not sure that I understood entirely correctly, but I do know that the time part is accurate. Something was put into the borrelia bacteria to make it glow so they could see it in the mouse. And that they could see the glowing bacteria go into the mouse and that within 30 minutes the bacteria was in the blood and that within 6 hours it was out of the blood and into the tissues of the body.

I said to him, "That's COOL and TERRIFYING at the same time." It's cool that they were able to show that, but terrifying because within SIX hours of attachment it can already be out of the blood stream and into the tissues! No wonder it's difficult to diagnose with blood tests! He studies with other Lyme doctors and between the two of us we always come up with treatment plans that can work for me. He listens. He understands. He asks questions. He's awesome. I refer as many people as I can to him I believe he's that good. Lyme is not a simple race. It's a marathon. More appropriately, it should be dubbed a triathlon with the emphasis on "tri."

Yes, my relapse is in full effect. What's next for me? Antibiotics? IV's? IM shots? More HBOT? Well I'm not exactly sure that antibiotics aren't in my future. In fact, if I had to take a stab at it ... I'm almost positive that unless something changes between now & February, I will probably be in the very least pulsing antibiotics.

IV's ~ not talking about Antibiotic IV's here though I suppose it's not out of the question. However I prefer a more natural route. IV High Doses of Vitamin C. If I could afford it and my veins were better, I would get a couple a week for a couple of months. However, I can't really afford it and I would rather not get another PICC unless absolutely necessary. Though, it it becomes necessary ~ it is an option.

IM shots? Well looks like to assist my fatigue problem, b12 shots are going to be my friend. I've done many things ... given myself a shot hasn't been one of them. Let's just add it to the list of things Dr. P has convinced me to do in order to improve my quality of health. So as soon as they come in, I'll be giving myself (or convince Rob to do it) a shot.

HBOT? It has seriously improved things already. So I will continue them with the frequency of one per week. I've already spent a grand total of 23 hours in the machine. It has made me feel less anxious, angry, and overall emotional. It has improved my headaches significantly. It has made my breathing less labored and less painful.

I also have an announcement to make in the next couple of weeks. And before anyone thinks it, no I'm not pregnant. It's an announcement that very few people know and I don't want it out in "public" until I have told the people it's going to impact in person first. I would rather them hear it from me than read it on my blog first or have someone else read it and call them. So once the people that absolutely must know know, I will share with everyone here.


** just so I don't forget, I wanted to add in that during my appointment yesterday I almost fell asleep. If I hadn't been fighting it so hard, I would have fallen asleep. I'm surprised I even remember anything from the appointment. Partially through my husband's appointment (his was right after mine), I had to get up to go to the IV room just to lie down. I couldn't sit up any more. **