7/17/2014

Lyme Disease and Co-infections ~ My Treatment Protocol ~ Antibiotics and Dr. Zhangs Modern Chinese Herbal Medicine Lyme Protocol #lymedisease #lymeadvocate #lymeeducation #lymetreatment #drzhanglymeherbalprotocol

One of the first things people ask me once they know I am "recovered" from Lyme Disease is, "What did you do for treatment and how can I get it?!?!"  I am always happy to share my experience but feel it's VERY important to state that what helps one person, may not help the next, or they may require a different dose or delivery method (pill vs. IV). I am NOT a medical doctor and NOT giving medical advise. Lyme Disease effects everybody differently and treatment should be under the supervision of a Lyme Literate Medical Doctor (LLMD). This post is ONLY to share my own personal experience and hopefully aid a few others in gaining knowledge about treatment options they may not have heard of before or may be wondering about the efficacy of. Prior to using Dr. Zhang's protocol, I admit I thought "All this money for hocus pocus herbs??"........but I'm living proof that it worked (FOR ME). If you get anything from this post, I hope it's that being open-minded with treatment is what got me well!! Had I held strong to my prior beliefs (standard medicine only), I can almost guarantee I would still be sick and looking for a "cure".

When I was initially diagnosed, I was positive for Lyme Disease, Ehrlichiosis and Babesiosis. After over two years of being pushed through the healthcare system (and loaded with "labels" ~ MS, Lupus, Fibromyalgia, a brain aneurysm, possible ALS, a hypochondriac - I'm sure that last one was in there too lol)......I finally had a REAL answer! And a LLMD with a real plan! I was immediately started on high doses of Zithromax and Doxycycline and remained on them for about two years. Throughout this time, Dr. Zhang's herbal protocol was used, as well as, vitamin supplements, hormone therapy and heavy metal cleansing.

Dr. Zhang's Herbal Protocol

1) Allicin (Garlic) which is actually Allitridi, a precursor that's converted to the active Allicin in the body. This was added for its antimicrobial and antifungal agents, as well as, its ability to intensify the antibiotics allowing them to cross the blood-brain barrier (I had neurologically-based Lyme symptoms, therefore, this was an ABSOLUTELY essential component of my treatment).

2) AI #3 was added to my protocol to help support my battered immune system and to minimize the herx effect. It's important to know that AI #3 should be stopped immediately if you are sick as it supports the immune system by suppressing it (so it's not battling itself).

3) Artemisiae this is one of the first choices worldwide now for malaria treatment. This was added to my protocol to treat my active Babesia co-infection, which has malaria-like characteristics.

4) Circulation P aids micro-circulation and promotes the healing of inflamed tissue; normalizes liver function (this is really important when you have so many medications being filtered through the liver); and normalizes skin complications common in advanced Lyme Disease.

5) HH this was used to fight against the Lyme spirochetes and also aids with bacteria and fungus (high doses of antibiotics can cause systematic yeast infections which can be life-threatening).

Additional Medications/Treatments

1) Pre- and Probiotics: This is an absolutely ESSENTIAL component to treatment! The antibiotics (particularly at such "gut rotting" doses), kill both the good and bad bacteria in the GI tract. When the "bad" bacteria is able to multiply and take over. This can cause severe diarrhea and in some cases can lead to death.

2) Coconut Oil: Please see my previous post on Coconut oil to read further about this but.......I've now acquired the nickname "Coco" cause I rave about this stuff so much! That should tell you something....lol

3) Cortisol: Hormone testing was done and my Cortisol levels were backwards (they should be high in the morning and low at night) and I was diagnosed with Adrenal Insufficiency. This hormonal imbalance caused me to be extremely tired during the day and an insomniac at night. Initially, I was placed on pharmaceutical-based cortisol which made my insomnia much worse and also increase my light sensitivity. My LLMD switched me to AdrenaCort which consists of Zinc, Vitamin B's, Vitamin C and Magnesium, which was a much better fit for me :)

4) Magnesium and Calcium Citrate: I also showed deficiencies in both of these, as well as, lead and copper toxicity. I was initially treated for the metal toxicity with the use of chelation. This was NOT done by my LLMD and was disastrous. I was given too high of a dose, causing my kidneys to shut down. My LLMD increased my dose of Magnesium/Calcium in order to help my body detox these heavy metals naturally.

5) Fish Oil/Omega 3: Used in the treatment of Lyme for its potent anti-inflammatory effects. It improves kidney function and is a major fatty acid source for the brain. It also further enhances hormone production of growth hormone, thyroid, insulin, progesterone, and ACTH. 

6) Vitamin B ComplexThe full range of B vitamins includes B1 (thiamine), B2 (riboflavin), B3 (niacin), B5 (pantothenic acid), B6 (pyridoxine), B9 (folic acid), and B12 (methylcobalamin). I won't go on to describe all the ways in which our bodies need Vitamin B's (that's easily googled).......just wanted to mention that I, as well as many Lymies, are deficient in these vitamins and they may need to be part of the treatment plan. 

I know the information above makes my treatment look somewhat "simple" but I assure you it was a complex teeter totter of ups-and-downs with the need for very close monitoring!! There were points in treatment when I was taking 120+ pills a day! Just the maintenance of that alone required spreadsheets and travel bags!  Diet was also an essential component of my treatment ~ I'll post about that topic soon! As always, please comment or email me with any questions! :)

8/16/2013

WMTW News Channel 8 Maine 8/16/13 ~ 18 New Cases of Babesiosis "Babesia" (Another Tick-Born Infection) Found In Maine #LymeDisease #Babesiosis

Hi All (particularly my fellow Mainers),

I'm going to keep this short as I only wanted to pass the word on.

WMTW New Channel 8 has reported 18 new cases of Babesiosis "Babesia"  recently diagnosed in Maine. This disease is very similar to Lyme Disease and is actually considered a co-infection at this time. This disease can be very serious and in some cases fatal! Babesiosis is a parasite which infects your red blood cells and eventually can attack any organ in the body including the immune system.

Please educate yourself on this disease and know that the likelihood of actually carrying multiple co-infections (strains) is extremely high! Advocate to have all tick-borne co-infections tested if you feel you may have been exposed to Lyme Disease or any tick-borne infection.

Please also bare in mind that research has STRONGLY shown that these diseases are also carried by mosquitoes, mice, squirrels, birds, rats, etc. Most people are exposed every single day and don't even know it!

Stay safe xoxo

8/15/2013

Lyme Disease ~ A Blanket Term ~Over 300 Strains Worldwide ~ How Many Do You Know??

When most people hear about "Lyme Disease" they think of it as one entity. How far from the truth this is! Yet another worldwide complication to Lyme diagnosis and treatment  is the lack of education and identification of the HUNDREDS of strains/species of Lyme Disease and other tick-borne infections. There are so many areas I could write about regarding this topic. Brace yourself......I'm feeling multiple posts in the near future ;)

We (as in the general Lyme impacted population) know that Lyme Borreliosis is a blanket term for a multitude of strains that can infect us and cause mass destruction. Think of Lyme Borreliosis being used as a blanket term like "cancer" but the actual type of cancer can vary (there are many, many types). Each type of "cancer" can impact a person differently, attacking different organs. This may account for why Lyme suffers have such varying symptoms; "The Great Imitator" mimicking so many other diseases. Some suffering with joint pain, migraines, light-sensitivity, word retrieval, short term memory loss, while others are experiencing disassociation, tinnitus, meningitis/encephalitis. I won't sit here and go on and on about symptoms because there is finally enough out there to learn that with a simple google search. My aim is to talk about the "untalked about/unknown" and get people talking.

When Borrelia Burgdorferi, a bacteria causing Lyme, was "originally" described to the public, it was believed to be the only "species/strain" responsible. In recent years, there are a multitude of "species" and "strains" being identified (but lets be honest, not talked about). 

I've searched hundreds of websites......read hundreds of research articles and I was unable to find even one resource which identified more then 13. There is estimated to be 300+. This is my attempt to add all documented strains in one location (please email or comment if you know of others so this list can begin to grow and become a more thorough resource!). 

Please bare in mind when reading this that:
- I have only included the countries in which I was able to find documented cases. We all know with global travel that its likely these strains are much more far spread. I mean, Australia has had multiple televised deaths from Lyme Disease and yet the government is only now starting to "accept" that Lyme might be there (All I can say to this type of ignorance is "seriously"!!!). 
- If there is a year in parenthesis, I was able to find a date from the source (mainly research articles) when these strains were documented. You will notice that many show 1980 as that was when the government began informing the public of this disease and allowing papers to be published.  
-Many of these dates are referenced from "The Catalogue Of Life". The Catalogue of Life Partnership (CoLP) is an informal partnership dedicated to creating an index of the world’s organisms, called the Catalogue of Life (CoL). 

http://www.catalogueoflife.org/

Current Documented Lyme Disease Strains:

1) Borrelia Afzelii - also found in Europe and associated with neurological symptoms; associated with rodents (1994).
2)Borrelia Americana - Found in North America
3) Borrelia Andersonii - Found in North America
4) Borrelia Anserina - (1891, 1925, 1980)
5) Borrelia Baltazardii - (1979, 1983, 2000)
6) Borrelia Bavariensis- Found in Europe
7) Borrelia Bissettii - Found in North America, Asia, Europe; Recently found in Czech Republic
8) Borrelia Brasiliensis - (1952, 1980)
9) Borrelia Californiensis - Found in North America
10) Borrelia Carolinensis - Found in North America
11) Borrelia Caucasica - (1945, 1957, 1980)
12) Borrelia Coriaceae - (1987)
13) Borrelia Crociduraw (1917, 1957, 1980)
14) Borrelia Dugesii - (1949, 1957, 1980)
15) Borrelia Duncani
16) Borrelia Duttonii - (1906, 1926, 1980)
17) Borrelia Garini - often found in Europe and associated with neurological symptoms (back and leg pain, meningitis, facial nerve paralysis / Bell's Palsy; it has also been associated with birds and rodents (1992).
18) Borrelia Graingeri - (1953, 1957, 1980)
19) Borrelia Harveyi - (1947, 1948, 1980)
20) Borrelia Hermsii - (1942, 1946, 1980)
21) Borrelia Hispanica - (1926, 1946, 1980)
22) Borrelia Japonica - Found in Japan (1994)
23) Borrelia Kurtenbachii - Found in North America
24) Borrelia Latyschewii - (1941, 1948, 1980)
25) Borrelia Lusitaniae - Found in Europe especially Portugal, North Africa and Asia (1997)
26) Borrelia Mazzottii - (1995)
27) Borrelia Microti - connections to relapsing fever in Iran (2000)
28) Borrelia Miyamotoi - Found in Japan; related to relapsing fever (1995)
29) Borrelia Parkeri - (1942, 1946, 1980)
30) Borrelia Persica - (1913, 1946, 1980)
31) Borrelia Recurrentis - (1847, 1925, 1980)
32) Borrelia Sinica - Found in China (2001)
33) Borrelia Spielmanii - Found in Europe (2006)
34) Borrelia Tanukii - Found in Japan (1997)
35) Borrelia Theileri - (1903, 1925, 1980)
36) Borrelia Tillae (1961, 1980)
37) Borrelia Turcica - (2004)
38) Borrelia Turdae/Turdi - Found in Japan (1997)
39) Borrelia Turicatae - (1933, 1946, 1980)
40) Borrelia Valaisiana - found in Greece and throughout Europe; also identified in Asia (1997)
41) Borrelia Venezuelensis - Found in South America (1921, 1922, 1980)
42) Borrelia Yangtze - Found in Asia


Another, related species, is known as Borrelia Lonestar. This is caused and follows the bite from a Lone Star Tick and symptoms strongly resemble Lyme Disease. Personally, I think it all falls under the same umbrella! There are no diagnostic tests for this infection and no official treatment protocol, although antibiotics have been found beneficial. 

Then you also must bare in mind that there are also tick-borne co-infections (please see my earlier post on them). So with the above information in mind, and now being informed that there are known to be over 300 strains of Lyme, how do you feel about the accuracy of testing ~ Western Blot tests for 2 "species/strains"??? Food for thought ;)

Again, thanks for taking the time to read this and educating yourself. Please email or comment with any additions that can be added to this list :) 

~ Sheryl








8/05/2013

Yet Another Person with Lyme Disease Misdiagnosed with ALS / Lou Gehrig's Disease / Amyotrophic lateral sclerosis

As all of us fellow Lymies know, the misdiagnosing that is occurring world wide is astronomical! Please take the time to watch this quick video and hear another story of a man originally diagnosed with ALS who infact has Lyme. Our prayers are with you Young family!
~ Sheryl

http://video.foxnews.com/v/2584466440001/living-with-lyme-disease/?playlist_id=930909749001

Spreading the Word ~ Lyme Disease Support Group For Men on Facebook

I've been emailing with a fellow Lymie, John Feld, who has been trying to start up a Lyme Disease Online Support Group for Men but hasn't been getting a big response from it. I know that there are lots of people out there who would benefit from a group like this and happily volunteered to spread the word through my blog. Please feel free to share this with anyone :)

You can search on Facebook for Lyme Disease Support Group for Men or follow the link below:

https://www.facebook.com/groups/206026942887865/permalink/216036221886937/

8/01/2013

Co-infection "Powassan Virus" confirmed in New York and Minnesota - Lyme Disease & Tick-Borne Infections

Confirmed case of fatal tick-borne virus "Powassan virus" in Minnesota and 16 confirmed cases in New York. Please take the time to watch this and know the signs to look for! If we, the Lyme Literates, have just heard of this new infection, then be assured not many doctors will know. Stay safe :)

http://www.news10.com/story/22966845/one-saratoga-resident-died-this-year-from-tick-borne-virus

7/29/2013

Lyme Disease and Facial Nerve Paralysis / Bells Palsy ~ Stay Away From Steroids!

A close friend of mine texted me because her son woke up with unilateral facial nerve paralysis (paralysis to one side of the face ~ often appears as drooping as seen in strokes). She mentioned that she felt it was Lyme related due to symptoms he had about 5 weeks prior ~ fever, headache, stiff neck. They are a very outdoorsy-type family and living in Maine......I had to believe she's right!
When I saw her a few days later, she was concerned that they had given her son both Doxycycline (antibiotic and great first choice) and a steroid (this is where the concern lies). See my friend has suffered through me preaching Lyme education for years so I'm sure she's heard me advice other people not to use steroids for ANYTHING while suffering from Lyme. She's also an amazing mom who researches to advocate for her kids BUT there just isn't that much out there about this particular topic.
Being a Speech Pathologist and post-Lymie, I've researched Facial Nerve Paralysis for years (most people refer to this as Bell's Palsy though in the medical world it is generally known as FNP unless there is no known cause at which point it is called BP). I don't know if knowing that really matters but my geeky brain feels the need to type it ;)
Having this background, I understand why his doctor advised both treatments - antibiotics to kill the Lyme spirochetes and the steroid to reduce inflammation to the facial nerve. BUT....here is where the problem lies.......When a person is infected with Lyme or co-infections, their immune system is already compromised. Suppressing the immune system further creates an environment for Lyme to spread and multiply and never allows the antibiotics a chance to work. This can further progress the disease from beginning stages to Neurolyme fairly quickly (based on the research I've done).
I also have first hand experience with being on steroids with Lyme prior to finding a LLMD who diagnosed me. My general practitioner (who didn't believe I had Lyme ~ shocker I know lol) put me on steroids due to recurring skin rashes that he couldn't explain. I mean to him I was a crazy hypochondriac with a random rash. So, I think to get rid of me, he put me on steroids to "band-aid" the symptoms, which did just the opposite. My Lyme symptoms flared!! We're talking brain tingling, severe light sensitivity, dizzy spells! This continued months after I came off the steroids and soon after more symptoms began to be piled onto my already full plate. Upon her hearing this, she called her doctor and informed him that she would not be giving the steroid to her son. Her doctor apparently said this was fine since he should progress fine without it (so why give it??).
I'm keeping this post short because the importance of this post is only to heighten awareness around Lyme Disease and the importance of staying away from any type of steroid!! You may be the one having to educate your doctors about this as it appears they still just "don't get it".
As always email or post comments with any questions :)




7/08/2013

Coconut Oil and Lyme Disease.......Why Not?

I usually keep the focus of my blog strictly Lyme and tick-borne disease but today I'm feeling a bit rebel and feel the need to talk Coconut Oil! Yes.....I fully admit, my old and now new again, obsession!!

See when I was being treated for Lyme, Ehrlichia and Babesia and taking a billion pills/herbs a day and on a strict Gluten Free Diet, Coconut Oil was only a small part of my daily routine and with the medication/herb routine I had, it was close to impossible to pin-point which things were helping with what! And honestly I didn't care - I used to tell my LLMD "Just stick me with like 20 IV's and get this (we'll pretend I said "Crap") out of my system!".  I'm sure my fellow Lymies can relate ;)

But as I'm now symptom free from Lyme and the other mentioned co-infections.......the positives of the few things I take (Coconut Oil, Flax Seed, Maca Root and a Daily Vitamin) are much easier to see and correlate. So let my preaching begin...........

The first thing I tend to hear when I mention Coconut Oil to people is......"fats aren't good for you". And in some sense they right......BUT CO's saturated fat is what they call a medium chain triglycerides (MCT). MCT's are processed differently then long chain triglycerides in that MCT's are quickly sent to the liver to be used for energy, whereas, LCT's are often stored in the body causing an increase in body fat. CO increases your bodies metabolism therefore helping you burn calories more efficiently. 

Coconut oil consists of three saturated fats: Caprylic Acid, Capric Acid, Lauric Acid. It has been shown that lauric acid (the saturated fat in CO and also found in breast milk) increases the good cholesterol in the blood to help improve cholesterol ratio levels and increases the immune system.  Coconut oil lowers cholesterol by promoting its conversion to pregnenolone, a molecule that is a precursor to many of the hormones our bodies need. 

Coconut oil can help restore normal thyroid function. When the thyroid does not function optimally, it can contribute to higher levels of bad cholesterol. This is certainly one benefit I've found since I began using CO and Maca Root again. I was "borderline" hypothyroid after my Lyme treatment and now with the addition of these, I've noticed I have more energy and have even lost a few pounds (what girl doesn't love that?). 

I also no longer suffer from dry eye or sinus dryness which kept leading to sinus infections. My skin looks moisturized (even without the CO on) and....this one still blows me away......the scar from the eyebrow ring that I took out 12 years ago is healing!! For 12 years I was left with an indented scar on my eyebrow and within 2 months its almost flat. My mom would tell you the 12 years was karma for "self-inducing" a scar on my face lol.

Another amazing quality of CO is its antifungal and antimicrobial ability. Coconut oil is great for treating systematic yeast infections, which most of us Lymie's have from months or years of antibiotics. Many people actually report a herxheimer effect when starting CO, so I suggest you start slow (1tsp per day and work your way up to 3-4tsp). I am now taking about 3tsp. per day and no longer have sugar level crashes either :)

Below is a very incomplete list of the health benefits of Coconut oil:

- Antifungal (yeast, athletes foot) and Antimicrobial

- put directly on a cut, blister or burn

- eye make-up remover or to diminish age spots

- anti-aging moisturizer

As a natural SPF 4 sunscreen
- Psoriasis and eczema
- prevent or reverse Alzheimers
- energy
- lowering bad cholesterol
- stabilizing the thyroid gland
- decrease allergies but rubbing CO inside your nose
- decrease cellulite
- weight loss (speeding up the metabolism)
- improving sleep
- a tablespoon melted into a cup of warm tea can help sooth a sore throat
- can help relieve the itch of chicken pox or poison ivy
increase absorption of calcium and magnesium
- helps remineralize teeth
- helps with anxiety/depression
- as a natural deodorant
- a natural baby lotion and can even be used for diaper rash
- speed up recovery from UTI's
- cold sores
- increase mental alertness
boost circulation and help those who often feel cold
- increase the length of your eyelashes
- stabilizing blood sugar
- increases your immune system
- dandruff (use as a conditioner)
- treats ringworm
- prevents gingivitis
- eliminates lice
- natural lubrication (most sites recommend not using this with latex)
- soothes pain due to teething
- cradle cap

Honestly, I could go on and on and make this a "Coconut Oil ~ 500 uses" post, but I'm sure anyone interested, will do their own addition research. It's definitely worth trying ~ people have been using this for thousands of years and still rave about it!! So whats the harm in trying??

Lastly and Most importantly, when picking a Coconut Oil to use - go with organic unrefined (refined means it has been dried and bleached and therefore looses many of its natural properties). Best of luck and as always ~ email with any questions :)

Sheryl





3/12/2013

CDC Lyme Disease Statistics by State 2002 to 2011

Please follow the link below to look at Lyme statistics from 2002 to 2011 by State. What is going on in the northeast, across the USA and globally? What is causing this huge increase in ticks and tick-borne illness??


CDC Lyme Statistics 2002 to 2011


What's scary.....is that its well documented that only about 10% of lyme cases are reported to the CDC for a number of reasons ~ lack of accurate diagnosis, inadequate testing, co-infections not accounted for, etc. etc. So multiply these numbers accordingly.

Whats someone elses scary story is becoming.............very close to home and a reality for all of us! Whether directly, a family member or a friend of a friend of a friend.....Lyme is on the rise. It won't be long before everyone knows someone.

11/26/2012

WOW to Ignorance ~ Insurance Companies 101

An acquantance of mine called me recently upset that her health insurance company was denying approval for her to receive more then 4 weeks of intravenous antibiotic for Chronic Lyme Disease. She had finally, after 6 years!!!, been diagnosed with Lyme. Bare in mind, this lady went from being a mid-30's, very athletic professional, to being wheelchair bound in the matter of 4 years. I don't know about you but it's still astonishing that doctors actually questioned whether there was really anything wrong with her because tests seemed "fine". Even her 3 year old daughter knew there was something wrong when she told her "Go doctor mommy. Doctor fix you".

Back on track......I asked her to forward me her insurance policy so I could read the small print.

Policy states:

"Insurance Company" will reimburse for the use of intravenous ceftriaxone, cefotaxime, or penicillin G (for up to four weeks) for the treatment of chronic or recurrent Lyme disease. Prior authorization is required for outpatient, office-based, and home infusion services provided to members enrolled in our HMO, POS, and PPO products.

"Insurance Company" does not reimburse for the use of parenteral antibiotics beyond four weeks, as there is no evidence indicating that such use is beneficial in the treatment of chronic or recurrent Lyme disease. We also do not reimburse for parenteral (IV or IM) imipenem-cilastatin, ceftazidime, cefuroxime, vancomycin, bicillin, or ampicillin for the treatment of early or late disseminated stages of Lyme disease, as there is no proven role for the use of these agents. It is recommended that use of these antibiotics be avoided, too, as prolonged use may encourage community-based resistance.

I have changed the name to "Insurance Company" as my battle is not again this particular company but all health insurance companies I have come across. It's their overall lack of knowledge. Their amazing ability to deny the existance of an epidemic that is effecting millions of people around the globe. How is it that our government can spend billions of dollars on swine flu vaccinations (almost half which have expired and were never used) yet this epidemic of lyme is being overlooked?

How is it that people are paying tens of thousands of dollars a year, out of pocket, in order to receive the treatment they NEED in order to save their lives?

MANY people are SUFFERING from Lyme. MANY people are FINANCIALLY DEVASTATED from Lyme. MANY people have become DEBILATED from lyme. MANY people have DIED from Lyme.........

MANY PEOPLE JOINING TOGETHER CAN MAKE A CHANGE AND HELP DEFEAT LYME.......PAY IT FORWARD!

9/12/2012

Lyme-Aid Music Festival 9/16/12

Just wanted to pass on the word:
Lymebuddies announce the second annual "Lyme-Aid" music festival to be held on Sunday, September 16, 2012. Time:10:00am - 5pm. Where: Thompson's Orchard. Please visit www.lymebuddies.com for more information :)

8/16/2012

R.I.P. Bill Chinnock - Bruce Springstein E Street Band - Long Time Lyme Sufferer

Just a reminder that Lyme is effecting people everywhere......it does not discriminate against age, race, wealth or health.

Musician remembered as battler against Lyme disease
Boston Globe - Boston,MA,USA
Associated Press

LEWISTON, Maine --A music legend in Asbury Park, N.J., as a founding member of what became Bruce Springsteen's E Street Band, Bill Chinnock was also a legend among Mainers stricken with Lyme disease.


The Emmy-winning singer-songwriter had been waging his own battle with the tick-borne illness that can cause exhaustion and joint pain while leaving patients confused and forgetful.


"I don't know how he did it, but he always stayed so positive," said Jodi Ireland, who was devastated at the news that Chinnock, 59, committed suicide March 2 at his home in Yarmouth. "I can't believe he gave up," she told the Sun Journal of Lewiston.


Chinnock's manager said he took his own life. His sister blamed his death on the disease he had been living with for years.


Friends and family members gathered Saturday at the First Parish Congregational Church in Yarmouth for a celebration of Chinnock's life.


His elder son, John Chinnock, said his father lived the life he wanted and followed his dream.


As neighbors in Fairfield, Chinnock and Ireland both became sick in the late 1990s. Chinnock helped Ireland find a diagnosis for the crushing fatigue, headaches and numbness that plagued her.


"We realized we were both having a lot of the same symptoms," said Ireland, a dance teacher now struggling with a Lyme relapse.


Chinnock eventually saw a doctor in Connecticut who diagnosed his illness as Lyme disease. He called Ireland, excited, urging that she undergo testing that would show that she also had the disease.


"I will always feel that I owe him so much. He helped save my life," Ireland said.


Chinnock and Ireland went through treatment, including antibiotics, but some symptoms persisted. After Chinnock moved to Yarmouth several years ago, the two kept in touch.


More than 23,000 new cases of Lyme disease were reported in the U.S. in 2005, nearly 250 of them in Maine, according to the National Centers for Disease Control. If caught early, the disease can be cured with antibiotics, experts say, but those who go undiagnosed for years can develop chronic and severe symptoms that leave them bed-ridden.


"It's almost like a death every time you get sick again," Ireland said.


Constantly upbeat and unfailingly positive, Chinnock was a champion for the Lyme disease community in Maine. Like many Lyme patients, he had his ups and downs but always seemed eager to comfort others.


He advocated for greater public education about the disease and met with Lyme sufferers, recommending doctors and suggested treatments. Sometimes he simply ...


commiserated, a blessing to patients who felt unheard for so long.


"A lot of people knew Bill. He helped a lot of people get diagnosed," said Constance Dickey of Hampden, founder of the MaineLymeDisease support group on Yahoo and chairwoman of the International Lyme and Associated Diseases Society.


In 2004 and 2005, Chinnock seemed to be doing well. An herbal supplement had been helpful and he was working long hours on a new album, the first in years.


But when Chinnock called to check in with Ireland last year, he told her he wasn't feeling well again. That was the last time she heard from him.


Some Lyme patients now wonder how they can be strong enough to handle the waves of pain and fatigue if Chinnock, their champion, couldn't.


"This has been a huge emotional blow," said Dickey, the support group founder. "It has rocked the community."


But even as they grieve, Lyme patients say they hope Chinnock's death will draw attention to the need for research and education about Lyme disease.


"I bet that's what he would have wanted, too," Ireland said.


------


Information from: Sun-Journal, http://www.sunjournal.com

8/13/2012

Bullseye Rash - Lyme Disease - only 20% of the time! Pictures of the Varying Rashes Caused by Tick-borne Illness

The first thing most people ask when they learn I had Lyme Disease is.......did you have a bulls eye rash? I, like the majority of Lyme sufferers and survivers, never remember having a bullseye rash but do remember other rashes which were later identified as being associated with Lyme and co-infections.


BULLS-EYE
Here are your "typical/classic" or should I say "actually known about or associated" rashes. As you can see they are clearly identifiable by the red outer ring, followed by a more natural colored skin and then the red center. PLEASE NOTE LESS THEN 20% OF LYME PATIENTS REPORT HAVING THIS RASH! Typically, doctors can identify this rash as a "Bulls-eye" and hopefully would immediately start their patient on a 3 months course of antibiotics (as this is early stage Lyme).

Unfortunately, even with this textbook rash, many doctors are recommending no treatment until a positive lyme titer is received, which could take months or never happen due to the tests being so unreliable.  




          



UNIFORMLY RED RASH
Next you have the unifromly red rash which lacks the ring or target appearance. These rashes tend to be oval or round in shape and have demarcated boarders.


 lyme disease rash



Reddish Blue Rash
Some Lyme Disease Rashes can have a blue / purple appearance and at times are mistaken for a bruise.

  


Blistering Rash
Yet another form of a Lyme rash includes varying degrees of blisters and are frequently misdiagnosed as a spider bite. Many people believe that some people are more sensitive to lyme borrealis and therefore they have a more extreme reaction to the spirochetes.





Dissemintated Rash
This can be caused by multiple tick bites but is more likely to show that Lyme (spirochetes) have already starting traveling to the blood stream to other areas of the body such as the joints, nervous system and other areas of the skin.

lyme disease rash            





www.medicinenet.com
www.webmd.com
www.lymemd.org
http://hardinmd.lib.uiowa.edu/dermnet/lymedisease2.html

8/06/2012

Dr. Joe Jemsek Speaks Out........The Controversy of Lyme Disease and Modern Healthcare

Please take 10 minutes and watch this video! It could change the way you look at Healthcare and is a shocking reality of the controversy over Lyme Disease and treatment.

This video may take a few minutes to load.
Patience is a virtue :)




http://youtu.be/V-lHDA863TM

8/02/2012

Additional Lyme Disease Blogs and Websites Worth Noting

I have received quite a few emails lately from people wondering what other blogs I would recommend reading that relate to Lyme Disease. Firstly, I think every single blog you come across has valuable information and different viewpoints. This list is by no means complete but here are a few blogs I enjoy and find informative:
www.lymerunner.com
http://lymemd.blogspot.com/
http://jmgarnet76.blogspot.com/
http://lymesentinel.blogspot.com
http://lymeactiongroup.blogspot.com/
www.sonyafightslyme.blogspot.com
http://lymediseaseresource.com/wordpress/
http://www.crazylyme.com/
http://lookingatlyme.blogspot.com/
http://lymepregnancy.blogspot.com/
http://bellspalsylymesdisease.blogspot.com
http://inthelymefight.blogspot.com/
Http://tiredoflyme.com

Also to note:
This website provides information on medical coverage options.
http://lymedisease.org/news/touchedbylyme/prescription_hope.html#comment-5406
www.jemsekspecialty.com

www.underourskin.com

Please check back as I will continue updating this list :)

7/28/2012

Lyme Disease: The Untalked About Epidemic - Getting Diagnosed #lymedisease #lymediagnosis

It has been a while since I've updated my Lyme blog - partially due to being really busy but also because I, like many of you, get overwhelmed with talking about Lyme sometimes. It's one of those diseases that you happily know little about until it effects you or someone you care about. When I was sick I used to be on the Internet researching Lyme religiously. It consumed me!

No doctors could give me a definitive diagnosis. The "diagnosis" varied from doctor to doctor and specialist to specialist. Over the 2 years it took me to finally take matters into my own hands and see a Lyme Literate Doctor(LLD), I had been diagnosed with Multiple Sclerosis, Fibromyalgia, possible ALS (Lou Gehrig's Disease), Lead Poisoning, a Brain Aneurysm and the one that really sent my mind twirling was "Its all in your head. Your only in your twenties. You must be looking for attention because there is nothing wrong with you. You must just be going through a stressful time".

That coming from a highly respected "Blood Specialist" who never even looked at the results of my lab work before meeting with me just about sent me over the edge! But in hindsight, he was the ignorance I needed to take a stand against the medical community and their cookie cutter ways. This disease is the total opposite of text book and for many doctors, if its not "text book" they either don't know it or care enough to research outside the box. So they pass you on to someone else.

I was no longer willing to let them send me from doctor to doctor with no answers. I remember telling this doctor that I was convinced I had Lyme Disease. I told him I had set up an appointment with a LLD, had blood work sent to IGenex in California and was expecting the results with a week. He looked at me and laughed his narcissistic laugh stating, "Lyme?? There are very few diagnosed cases of that in Maine. If you want to go see a Lyme Specialist, you're wasting your money". I remember leaving his office frustrated, raged, embarrassed, deflated and yet determined to prove him wrong. And within a week........I did!

Firstly, I sent him an article released by a leading area hospital which reported that 88% of all deer ticks tested in Maine that year were testing positive for Lyme Disease. It doesn't take a genius to realize that if that many ticks in this area are infected, the number of people also suffering must be off the charts. So him telling me "There are very few diagnosed cases of that in Maine" - the only thing he was right about is people in Maine are not getting diagnosed properly! They are sadly written off or mis-diagnosed and over time Lyme becomes so debilitating they meet the criteria for another disease and the source is never treated. I can't tell you how many people I have met over the past 5 years who's Lyme has progressed to such a late stage that they were no longer able to talk or walk, required a feeding tube or were so psychologically effected that people had written them off as mentally ill. Its important to note that Lyme can demonstrate in so many ways!! It can range from all physical symptoms with some brain fog, to loss of motor control to a variety of psychiatric symptoms. Everyones body is "attacked" differently which makes this disease "The Great Imitator".

Secondly, the next week my lab results came back from IGenex and sure enough not only did I have Lyme Disease, I also has the co-infection Babesiosis (Babesia). So of course I forwarded the results to the so called "Blood Guru" - and not surprisingly he never responded. I can only hope he actually took the time to look over these things and awaken to this new untalked about epidemic!

So to anyone out there reading this........and I must say its astonishing to be followed in 12+ countries now.......Advocate Advocate Advocate!!! Sometimes we have to take matters into our own hands and realize doctors and specialist DO NOT KNOW EVERYTHING!

10/26/2010

My "Interview" with a Doctor of Nuclear Medicine - 10.26.10

I had a really interesting conversation with a doctor of nuclear medicine this evening. I won't put his name here for confidentiality reasons, but he did give me permission to share our conversation on my blog :)

He had emailed me a few weeks ago, hoping to interview me about Lyme Disease after fumbling upon my blog. I responded at first, just stating that I am by no means an expert, but would be happy to answer any questions I could or forward him to someone I know more qualified. I have to admit I was intimidated by the title "Nuclear Medicine". What could I possibly teach this man?

He started by giving me background on his education and reason of interest in Lyme Disease. He lives in Northern California where ticks have apparently become more prevalent in the last few decades. He told me that he had many patients cross his path who questioned Lyme Disease as the cause of their newly acquired psychiatric symptoms. He admitted that he knew little about Lyme Disease at the time and generally didn't go above and beyond to find a diagnosis for these patients because he figured they were just people in denial of having depression or anxiety disorders.

I have to admit I was a bit taken back by this confession. After having felt written off by so many doctors during my struggle to be diagnosed, it hit a soft spot. But I took a deep breath and I kept on my professional head.

He went on to tell me that about 2 years ago, his wife, who just turned 38 years old, started having "panic attacks, mood swings, crying spells, was often tired and went from being an outdoorsy type to a couch potato". She went to her doctor, who told her it sounded like depression and wrote her a prescription for Zoloft.

He said over the next few months new symptoms arrived but each time his wife went to the doctor they told her she needed to give the medicine time to work and that it was only anxiety. The doctor admitted that he began to wonder if his wife was in fact Bipolar or had a severe Anxiety Disorder cause her doctor had run many tests on her and they were all "normal" results.

It wasn't until his wife had a seizure that he asked for tests that many of us would never be able to get. Sure enough when the results came back - she was positive for Lyme Disease and because it had gone misdiagnosed it was in the chronic phase already.

At this point, the doctor broke down in tears and said, "Even I failed my wife. I didn't believe her that something was physically wrong. Her own husband". It was then that I knew this conversation needed to be one of support and not focused solely on education.

Our conversation lasted just over an hour. We decided to continue the "interview" another night and I will post about our discussion once that occurs.

To the doctor this blog is referring to: forgive yourself for being uneducated about Lyme. You very likely saved your wife from a lifetime of misery with undiagnosed Lyme due to your pull in the medical field. See the positive of the lesson learned. Feel pride that you are another doctor that has opened his eyes to the need for education about Lyme Disease and other tick-borne infections! Pay it forward and educate other doctors who can in turn make a difference to many peoples lives. I look forward to talking soon :)

10/08/2010

Lyme Disease - A Three Stage Progressive Infection

I assume I'm pretty safe in guessing that most people are unaware that there are 3 stages of Lyme infection. The more you educate yourself about the symptoms of Lyme Disease, the earlier you could advocate for testing. If you or someone you know is experiencing symptoms that doctors don't have an explanation for or write off as stress or other diseases mentioned in an earlier post about misdiagnosis this information may be the key to a diagnosis. So read about the 3 stages and educate a friend about them :)

Stage 1: Early Localized - day of bite up to 4 weeks
In this stage of lyme infection, many patients have no symptoms. Others may experience:
- a Bulls-Eye Rash (erythema migrans)
- Flu-like symptoms
- Fatigue
- Headache and neck stiffness
- Fever and/or chills
- swollen lymph nodes

Stage 2: Early Disseminated - 4 weeks to 4 months
Stage 2, known as early disseminated, begins approximately 4 weeks after the initial bite by an infected tick. Many people have no symptoms prior to this stage, when more noticeable symptoms begin occuring. These symptoms may include:
- Significant fatigue
- Joint pain
- Skin rashes in several places on your body that develop as the infection spreads (not a Bulls Eye Rash)
- Heart palpitations/Irregular heart beat (in some cases severe heart problems have been reported)
- Pericarditis (inflammation of the lining of the heart)
- Dizziness or fainting
- Meningitis (swelling of the lining of the brain)
- Poor memory
- Difficult with concentration
- Swelling of the liver
- Carpal tunnel syndrome

- Bells Palsy (paralysis to one side of the face cause by paralysis to one of the facial nerves)
- Conjunctivitis
- Numbness, weakness or pain in the arms or legs
- Vision changes due to damage to deep tissues in the inner eye

Stage 3: Late Persistent or Chronic
Sadly, the majority of people now being diagnosed with Lyme Disease are in the third stage and are often experiencing heart, neurological and joint symptoms. Symptoms at this stage are vast! It would take me weeks to try and list them all. Below is a very incomplete list of commonly reported complications of chronic lyme infection:
- Swelling and pain in the joints (often knees)
- Chronic Lyme Arthritis, which causes recurring episodes of swelling, redness, and fluid buildup in one or more joints that last up to 6 months at a time
- Severe fatigue (often diagnosed as Fibromyalgia, Mononucleosis or Chronic Fatigue Syndrome)
- Light sensitivity
- Optic nerve atrophy and eye swelling
- Numbness or tingling in the hands, feet or back
- Neurological changes, including problems with memory, mood, or sleep and sometimes problems speaking or retrieving words
- Anxiety or depression
- Dementia
- Psychotic episodes or episodes of confusion
- Paralysis
- Dysphagia (Swallowing/Feeding Disorders)
- Loss of motor control (Dyspraxia)


Top Mis-diagnoses:
- Multiple Sclerosis
- Parkinson's Disease
- Alzheimer's
- Lou Gehrig's Disease /Amyotrophic Lateral Sclerosis (ALS)
- Chronic Fatique Syndrome
- Fibromyalgia
- Lupus
- Scleroderma
- Sudden Infant Death Syndrome (SIDS)
- Autism
- ADHD
- Irregular Heart Rythm, Angina, Heart Failure
- Eye Inflammatory Reactions
- Panic Attacks / Anxiety Disorders
- Depression
- Schizophrenia and/or Psychotic Episodes
- Obssessive Compulsive Disorder (OCD)
- Bell's palsy (Facial Paralysis)
- Blood Coagulation
- Pulmonary Embolism
- Meningitis
- Anorexia Nervosa
- Athritis
- Asymmetrical Hearing Loss
- Deafness (sometimes sudden)
- Tinitus (ringing in the ears)
- Brain Tumor or Aneurysm
- Cortical Blindness
- Photophobia (Light Sensitivity)
- Dementia
- Demylinating Disorders
- Miscarriage or Fetal Death
- Migraines / Severe Headaches
- Acquired Immune Deficiency Syndrome (AIDS)
- Hypothyroidism
- Horner's Syndrome
- Influenza (in earlier stages)
- Vertigo (Dizziness)
- Tourette's Syndrome
- Syphilis
- Transient Ischemic Attack
- Stroke
- Transient left ventricular dysfunction
- Trigeminal Neuralgia
- Epilepsy (Seizure Disorders)
- Pericarditis
- Non-Hodgkin's Lymphoma

(Please note that is a VERY small list of the many diseases/disorders Lyme can mimic! Please do your research!)



Many people have emailed asking what they can do to help. Here's what you can do.....educate two friends about the stages and symptoms of Lyme Disease. Tell them to education two friends and ask those friends to educate two more friends. Let's start the cycle of education and bring attention to a disease millions are silently suffering from at this very moment and don't even know it!




9/17/2010

Photos of Bulls-Eye Rash ~ Lyme Disease

How many of you can tell me which pictures are of a Bulls-Eye Rash caused by Lyme Borealis?



A)

B)  

 C)

D)

E)


If you said "All of the Above" you are correct! Even what we consider an easy to identify rash can demonstrate in many ways.

A, B, C and E are often not identified as a "Bulls Eye Rash" by physicians and written off as a spider bite, infected bug bite or fungal infection. Take the time to look on the web and educate yourself so you can identify a Bulls Eye Rash when you see one. You could change someones fate for the better if you do!

9/15/2010

Lyme Disease and Children - Could This Be a Child You Know?

If nothing else about this blog catches your interest, I would have to think this post will at least touch your heart. The topic – Lyme Disease and its impact on children.

Lyme disease is the most common vector-borne disease among children in the United States; the incidence of Lyme disease is believed to be higher among children than adults. As an adult we can explain our symptoms fairly well, but a child doesn't have much of a history of wellness prior to becoming ill. How are they supposed to know what “normal” is? What normal tiredness feels like?

A small lucky few, children and adults, are diagnosed with Lyme Disease early, generally by the bulls-eye rash. When this rash is present, many physicians are open to prescribing a month of antibiotics. It's when the rash is not seen that Lyme is overlooked.

Research varies but a safe estimate of the percentage of people who actually demonstrate with a bull-eye rash is somewhere around 15-30%. That leaves us with a huge percentage of people who doctors are turning a blind eye to. People who may also carry a co-infection (which is not treated with the same antibiotics as Lyme nor does it cause a bulls-eye rash) and the children who have carried Lyme for years, and in some cases, since birth. What's happening to them? Unfortunately, for many physicians, no rash means no treatment! Don't doctors read research articles anymore??

Most physicians admit that Lyme can be hard to diagnose in children. They report that symptoms are often vague or seen as a learning disability or developmental delay and therefore didn't “red flag” them to test for Lyme or co-infections. To me this is an excuse for lack of education – I'm not a doctor but I have educated myself enough to know that if any of the following symptoms exist, Lyme should at least be ruled out.

I'm going to focus this post more on the neurological impact than “typical symptoms” (such as joint pain or fatigue) since I feel the neurological symptoms are more frequently undiagnosed or misdiagnosed. Please note that sometimes children and adults only demonstrate with one or two symptoms while others have multiple.

According to research, children are bitten by ticks more frequently around the head and neck, making them more vulnerable to brain, heart and central nervous system infections. They also are at risk for contracting Lyme in utero.

How many parents have I talked to that have assumed that their child was “delayed” , “learning disabled”, “has ADHD”, “is depressed”, “has anxiety” or “just doesn't try” only to find out years later that these symptoms were caused by Lyme. I'm sad to say WAY TOO MANY!

The resulting neurological symptoms of Lyme disease are often misdiagnosed. Below is a partial list:


  • severe fatigue unrelieved by rest

  • insomnia

  • headaches

  • nausea, abdominal pain

  • impaired concentration

  • poor short-term memory

  • inability to sustain attention (often misdiagnosed as ADHD)

  • difficulty with executive functioning (organization, higher-level thinking and concepts)

  • difficulty thinking and expressing thoughts

  • difficulty reading and writing (may be diagnosed with a learning disability or processing disorder)

  • being overwhelmed by schoolwork

  • difficulty making decisions

  • confusion

  • uncharacteristic behavior

  • outbursts and mood swings

  • fevers/chills

  • joint pain

  • dizziness
  • noise and light sensitivity
  • change in vision (acuity, tracking and light sensitivity
Congenital or gestational Lyme disease has been reported in some children who were infected in utero or by breastfeeding. In these patients suspicion was raised by Lyme Specialists when the child demonstrated with:

  • frequent fevers

  • increased incidence of ear and throat infections

  • increased incidence of pneumonia

  • irritability

  • joint and body pain

  • poor muscle tone

  • gastroesophageal reflux

  • small windpipe (tracheomalacia)

  • cataracts and other eye problems

  • developmental delay

  • learning disabilities

  • psychiatric problems – tantrums, anxiety, depression, obsessive-compulsive tendencies, etc
  • In more severe cases, stroke, cerebral palsy-like symptoms, inability to speak or control motor movements such as walking, loss of speech and death have been reported.
It's important to remember that symptoms can present themselves very differently from person to person. Some children have difficulty with concentration while another child has great attending skills but is irritable. The variation of symptoms is what makes this disease hard to define and not “textbook”. Please watch the short video below to open your mind to how big this problem really is!!

http://www.youtube.com/watch?v=sxWgS0XLVqw&feature=related

9/11/2010

Immune Response to Lyme Sphirochetes and Diagnosis

You might be wondering why you need to know the difference between immune responses. Well.....due to the difference in the two antibodies, four separate tests are available to test for their presence. Therefore, a physician must specify whether or not a patient should have an IgM or IgG Western Blot, or an IgM or IgG ELISA test.

I'd say at least 80% of the people who I have talked to had no idea which of the four tests they were given to test them for Lyme Disease or another tick-borne infection. Needless to say, its essential to know which test was given – it can help in estimating the time of infection (Lyme vs. Chronic Lyme) or can explain a false negative.

"Lyme is an enigma. While the debate rages over proper diagnostic and treatment procedures, patients get sicker and some even die." - Pat Smith, LDA, NY Assembly Hearing Nov, 2001

"Because the symptoms can be so varied and are often so vague, borreliosis is typically not even considered for testing or treatment." - Charles Crist, MD



Immune Responses Explained


IgM - is a sign of a recently contracted infection.


The first antibody our body makes in response to a foreign invader is usually immunoglobulin type M (IgM). This large antibody takes 2-4 weeks to be made in quantities large enough to be detected. It is at its peak of production four weeks after exposure to an antigen or in this case Lyme Spirochetes. The IgM antibody only stays in circulation for about three months.


IgM is 6x larger than the IgG antibody. Due to its size, this immunoglobulin is not believed to cross the placenta. Since it is fairly difficult for it to enter the fetus from the mother, any newborn that starts to make IgM antibodies against Lyme disease should be considered actively infected, however, a fetus exposed to Lyme Spirochetes early in the pregnancy may never make an antibody response to the Lyme bacteria because the baby's immune system doesn't recognize it as foreign. This means that doctors need to take a closer look at Lyme when babies are born with associated symptoms with no known origin (we'll discuss signs in babies and children in another post).


IgG - is a sign of an active infection, a past exposure to or past infection by the organism.


The second antibody we make after the IgM is the IgG antibody. This antibody takes 4-8 weeks to form and can be non-detectable after 4-6 months; peaking at about six weeks. This antibody crosses the placenta, so an infected mother can pass this antibody to her unborn child.

This antibody attacks viruses, bacteria, yeast, toxins, and transplants.
Many insurance company refuse to pay for more than one test. For example, the Western Blot IgG and the Western Blot IgM are completely different. The people approving and denying insurance claims lack education about Lyme and the bodies immune response so they consider the tests the same and deny claims for reimbursement on more than one test. It's like saying you can only test for one type of cancer – so choose wisely!


How much longer will we accept the lack of education about Lyme Disease and its impacts on the lives of people around us? People are having to spend thousands to tens of thousands of dollars out of pocket because their insurance company won't reimburse for Lyme testing or treatment regimes past 3 weeks! Write to your local congressmen, insurance companies and support Lyme education and research!

9/07/2010

Lyme Disease - Testing & Diagnosis - Lesson Learned

I wanted to start by thanking everyone who has sent me emails with questions and positive feedback about my blog! Can't believe its now being read in 5 countries!! Thanks for everyone's help in getting the word out! If we don't do it, no one will.......

A few people have emailed me asking why Lyme Disease is so difficult to diagnose. I wish there was an easy answer to this question but, as with all Lyme topics, lots of factors come into play.

Lyme is a tricky entity. It can mimic and/or cause hundreds of other diseases and symptoms vary greatly from person to person. It's also a "clinically diagnosed” disease - meaning blood-work should be looked at as a guideline but the diagnosis itself should be based on the symptoms the patient demonstrates with, even when a negative result is found!

Many doctors think in black and white terms - if the test is negative, you don't have it, right? Well, unfortunately in millions of cases the answer is "WRONG!".

We have to start thinking about who defines the black and white criteria......media, the Centers for Disease Control, pharmaceutical and laboratory companies. At this point, each laboratory has its own criteria for a positive and negative result. So you could have two completely different results from the same blood sample.

Let's break down some of obstacles in diagnosing Lyme Disease:

-The way in which Lyme tests are promoted (financially backed)

- Reliability not only depends on the test given but also on the criteria used by the laboratory processing the blood-work.

- The tests are primed to recognize laboratory strains of Bb (Borrelia burgdorferi - i.e. Lyme) rather than naturally occurring strands


- The Lyme spirochete can hide in the body and confuse the immune system into thinking its not there. So, no antibodies are produced, resulting in false negatives.

On top of that - Have we recognized all the strains and species of Borrelia that cause Lyme disease symptoms and are we incorporating them into our tests? The answer is no.

Lyme testing is still in its beginning phase and includes a huge margain of error. Let's look at the two main tests given:
1) Enzyme-linked immunosorbent assay (ELISA)

This is the first, and often only, test people are given by their doctor. At best its reported to be 50% reliable (why not just toss a coin?). In my opinion, it should be considered more of a screening tool and not diagnostic tool.

The ELISA panel tests for antibodies that your body makes to defend itself against the spirochetes that make up Lyme Disease. I'll discuss what spirochetes are in another blog, for now just think of them as microscopic corkscrew-shaped bacteria. Research has shown that after approximately 3 months, depending on the strength of your immune system prior to infection, the body naturally stops creating antibodies. What does this mean? It means that if you have been infected for more than 3 months - you will most likely test negative!
2) Western Blot

In as simple of terms as possible, the Western Blot makes a map of the different antibodies the immune system produces to certain bacteria. The map separates the antibodies by the weight of their respective antigens and are reported in units called kilo daltons or kDa.

For example, a Western Blot may report bands at 22, 23, 25, 31, 34, 39, and 41 kDa. Each of these bands represents an antibody response to a specific protein found on the spirochete. Some doctors and laboratories feel that unless you have multiple bands, you don't have Lyme or another tick-borne infection. This way of thinking makes no sense to me – particularly when research has shown that even one positive band responds to treatment. In one study, 88% of patients improved with treatment when only one band was present. How much more evidence is needed?


Now to complicate things even further, there are two version of each test.

- ELISA IgM

- ELISA IgG

- Western Blot IgM

- Western Blot IgG
 
I know this is a lot to take in at once so I feel its best to do it in installments. Until I got sick, I had no idea that any tests other than the ELISA existed or that the tests were far from accurate. I also trusted that doctors would be more educated than I was about Lyme Disease. Lesson Learned!
 
 
Next blog will explain the antibodies IgM and IgG.....

9/04/2010

Advocate for recovery; don't accept band-aids........

Let's not be pessimists but realistic that the world runs on money and money skews knowledge. The pharmaceutical companies benefit more from “band-aid” medications which require continued use vs. medications that would actually get to the root of the problem and end with recovery. Pharmaceutical companies give great incentives to doctors and universities who in turn train new doctors to treat with their products. Doctors go to school to learn how to heal and unknowingly learn how to “heal” using medications made not to heal but to band-aid. It's a vicious cycle!

Think about it....we learn about most diseases through media. Whether it be the internet, television, newspapers or magazines everything we read is the opinion of someone else and the message is funded by a company looking to sell their product. Take research articles for example – a large part of the general population takes them at face value without finding out who conducted the study and whether they could benefit financially from the results. Our brains are trained that research is fact but when you dive deeper you realize research can also be biased.

Now don't get me wrong.....some of the resourcesavailable to us are full of factual information but the phrase “small print” isn't globally known for no reason. Look at the AIDS epidemic. How long did the government know about HIV/AIDS before the general public was made aware.

HIV and AIDS was first brought to light in the early 1980's. It's been almost 30 years and this subject still sparks fierce debate and arguments regarding its origin, treatment, cure and global impact. AIDS did not even acquire its name until 1982, although evidence of the disease dates back as far as the 1880's. Why did it take over 100 years for this disease to be labeled and many more years for it to be presented to the general public?

In 1985, AIDS was documented in China, making it found in every region of the world. Now I don't know about you but I think its our right as citizens to be warned about diseases more than 3 years before it becomes a world wide crisis; particularly when it had been kept quiet for 100 years.

Remember the statistics of Lyme Disease from my previous post....now imagine what those numbers will be 100 years from now (2110). (Don't forget those statistics don't account for other tick-borne illnesses!). It's a scary thought and something we have the power to change! Are we going to be like the previous generations and turn a blind eye.....or are we going to use our voices to educate and potentially save future generations from a Lyme Epidemic?  Educate Yourself and Others!