I've had Lyme since 1997. There are many good resources on Lyme, here are one's I know for your own research:

(For those wondering about "Cooter", he was my horse.  He was an old "coot" and the Duke's of Hazard namesake stuck.)

Organizations on Lyme:

www.columbia-lyme.org
Columbia University has a Lyme research/treatment group run by Dr. Fallon - this is the first place I would go for info and help.


www.ilads.org/lyme_disease/about_lyme.html
ILADS - International Lyme And Associated Diseases Society - If you can have two "first places I would go" this is my other "first place".


http://www.cdc.gov/ncidod/dvbid/lyme/ld_humandisease_diagnosis.htm 
The CDC says Lyme is a clinical (symptom) diagnosis - not a test diagnosis. This is critical. 

http://www.journals.uchicago.edu/doi/full/10.1086/508667
The Infectious Disease Society of America (IDSA) states chronic lyme does not exist and believes in treating for Lyme only when there is a positive ELISA and Western Blot test.  These tests can be 90% accurate when symptoms are obvious, but only 50% accurate when symptoms are not obvious. The IDSA defines long term treatment as 6 months.  (My treatment started in 2006 - and has not stopped yet.)  Studies have shown antibiotics for 6 months doesn't remove the lyme in some cases.  Based on this and other studies, the IDSA has defined antibiotic treatment for more than a few weeks is not warranted or responsible medicine in lyme.  Basically it seems as if the IDSA is advocating under-treating the lyme patient and saying if there are any remaining lyme symptoms its not lyme - period - because we said so.  Unfortunately, the IDSA is a very influential organization and influences many Dr's opinions.  For example: DARTMOUTH MEDICAL CENTER HAS A POLICY CHRONIC LYME DOES NOT EXIST based in part on the IDSA recommendations. I know from verification and personal experience.

The IDSA panel who created the lyme guidelines has been challenged. The IDSA lyme panel was investigated for anti-trust issues by the CT Attorney General.  The result was a settlement which included a hearing investigating whether the IDSA Guidelines should be re-visited.  Although the CT Attorney General officially noted concern over the hearing decision process, the effort bound to fail.  Simply put, if the IDSA wants to have an official opinion, with supporting studies, stating they believe the earth to be flat, no authoritative body can change it.  The IDSA is accountable to no one for being wrong, despite overwhelming evidence to the contrary.  It's just an opinion.  No changes have been made to the IDSA guidelines - Drs across the country continue to follow them.

Not all patients need lyme treatment for long periods of time.  Most are handled in a few weeks.  The subset of lyme patients who need treatment for years have been estimated anywhere from 10% to 40% of treated patients.  I am one of them.  Just a quick read of my older posts on this site will show my improving health - because I can communicate better now than when I typed my first post.  So advocates for long term lyme treatment are needed and does work.

The IDSA Hearing on the IDSA website (legally they were only required to keep on the site a year):   http://www.idsociety.org/Content.aspx?id=15026  http://www.idsociety.org/content.aspx?id=13352

http://www.ilads.org/lyme_programs/lyme_hearing_press1.html

Doctors with Lyme:

http://www.psychiatrictimes.com/neurology/article/10168/55056?pageNumber=2&verify=0

http://www.ilads.org/lyme_research/lyme_articles11.html

http://www.ilads.org/lyme_research/lyme_publications22.html

Films:

http://www.latimes.com/entertainment/news/la-et…

www.undertheeightball.com

http://movies.nytimes.com/2009/06/19/movies/19u…

www.underourskin.com

http://moviecitynews.com/reviews/2009/lymelife….

lymelife.com

TV Reporter w/ Lyme:

http://www.wbaltv.com/health/22744251/detail.html

Books & Links:

www.amazon.com/Healing-Lyme-Prevention-Borreliosis-Coinfections/dp/0970869630
Healing Lyme Disease; by Buhner. I was first treated and helped tremendously by an acupuncturist trained by the author of this book. It helped get my life back. A year later, I added a western antibiotic treatment from a doctor on Columbia University's Lyme educated doctors list and improved further - almost to pre-lyme health!


www.amazon.com/Everything-About-Disease-Tick-Borne-Disorders/dp/047116061X
Everything You Need to Know About Lyme Disease and Other Tick-Borne Disorders; by Karen Vanderhoof-Forschner


www.amazon.com/Coping-Lyme-Disease-Practical-Diagnosis/dp/0805075631
Coping with Lyme Disease: A Practical Guide to Dealing with Diagnosis and Treatment, by Denise Lang


www.amazon.com/Widening-Circle-Disease-Pioneer-Tells/dp/0312140681
The Widening Circle: A Lyme Disease Pioneer Tells Her Story, by Polly Murray This is the story of how the illness was named and the fight and casualties along the way.

http://www.amazon.com/Helene-Jorgensen/e/B0032DWZFK
Sick and Tired: How America's Health Care System Fails Its Patients, by Helene Jorgensen. An economist looks at her heath care system and her illness: lyme.

www.lymepa.org (has a private teen discussion group)

www.lymediseaseassociation.org

http://www.underourskin.com/screenings.html - a movie about Lyme

http://www.lymeinfo.net/lymediseasetreatment.html

Gastro-Intestional involvement in Lyme:

http://www.thehumansideoflyme.net/viewarticle.php?aid=62
There are also other good articles from Dr. Virginia T. Sherr, MD, a doctor with Lyme.

Heart involvement in Lyme:

There are two things that can happen to the heart in lyme, heart block (heart nerves messed with = heart stop) and tachycardia/brachycardia (racing heartbeat/ slow heartbeat).  The tachycardia/brachycardia won't kill you but it can make you feel icky, panicky or tipsy. I still get this occasionally, with me it usually last for under a minute, for others it can last hours or longer.

Heart block on the other hand, can kill with out warning, the first time.  But heart block doesn't always kill.  What happens is your heart just stops, period, due to neurological failure (we think).  I know no one who has had this diagnosed.  Part of what makes heart block so scary is it ONLY happens in the EARLY stages of lyme.  So, heart block could be your first and only symptom of lyme!  If it kills you, its very, very unlikely anyone will figure out Lyme was cause of death.  (For example, a 12 year old that suddenly dies while playing sports will likely be blamed for congenital heart condition that was asymptomatic.)

Another symptom that can SEEM like heart block, is POTS (Positional Orthostatic Transitional Syndrome).  This seems to happen ONLY in the LATER stages of Lyme.  This really should go under neurological because what we think is happening is, the vagus nerve has some how been affected by lyme.  The vagus nerve is a very important link in the chain for many bodily functions including keeping the right blood pressure as you move around.  This lyme/POTS symptom can leave you with a BP of 20 - which means you don't have enough pressure for bodily functions.  This is what happened to the blond girl (Sea World Trainer) in the movie 'Under Our Skin'.  I've had this symptom.  It feels like your heart stops (there is no longer enough pressure to feel your own heartbeat) and you loose all motor control within 6 seconds.  Just as you black out, the heart re-starts.

Sexual Transmission of Lyme:

Sometimes we don't see what is right in front of our eyes.  We don't know if Lyme is sexually transmitted.  What we can say is, Lyme is a spirochete, as is syphilis.  And both lyme and syphilis act very similar taking similar paths through the body, infects the host in similar patterns. Classified as a type of bacteria, a spirochete is actually borderline between a bacteria and a virus, having characteristics and lack of characteristics in both categories.  The spirochete's particular "MO" is to leave the blood and drill into tissue with its corkscrew shaped body.  Spirochete illnesses seem to be able to attack any organ system, including the brain, passing through the very restrictive blood-brain barrier. 

What I can say is, sometime during the first year of having Lyme, I felt something was not right.  I don't know if it was weeks or months into the illness, but intuitively, I wondered if I should protect my husband until I found out what the problem was....  I did, even though there were zero indications and no medical advice to do so.  I felt a little stupid and over the top, but I did anyway.  For years my husband humored me, but had no idea why.  This summer after seeing the film 'Under Our Skin' he said "I will never complain about wearing protection again...".  He does not have Lyme in 12 years.  There are few with Lyme who can say that.

We don't know if Lyme is sexually transmitted, the research isn't there yet.

http://www.canlyme.com/sex.html

Knowing something about the history of syphilis can probably help guide us until authorities give us and our medical professionals guidelines on the sexual transmission of Lyme.

http://www.ramcjournal.com/2007/sep07/blair.pdf

Panic Attacks in Lyme: 

http://www.thehumansideoflyme.net/articlelist.php?mid=4

Neurological involvement in Lyme:

http://vesta.cumc.columbia.edu/lymedisease/news/user/featNews.php?sel=newsFeat

Ok, the list is long here, and in years, I have had 99% of the symptoms.  I will say this one thing. I got rid of almost all of my parathesias within one hour of the first treatment of nortriptiline (15 mgs I think).  Stunned the neurologist, who was thinking MS and sleep disorder.  I evened out on a 40 mg dose for a few weeks/months and then stopped treatment.  The parathesias don't come back, as long as I am taking my antibiotics correctly. 

Restless Leg Syndrome can be a misdiagnosis for Lyme.  If your legs don't jerk at night or if it isn't just your legs, and you've been given this diagnosis, keep a health diary, just in case you have Lyme, not RLS.  RLS is commonly caused by a low iron level.  Addressing the low iron with supplement has completely solved the chronic RLS symptoms in one person I know with RLS.

Chronic Fatigue Syndrome is likely a version of Lyme in my opinion.  I  have suspected it strongly for a long time, now, with Dr. Fallon's, et al, data, we have some evidence.  I now feel comfortable saying I think the recently new "drug for CFS" is a greedy financial crock.  The data the drug works is weak at best, and results have been very underwhelming.  Its starting to look like only antibiotics will help, anything else is a placebo.  I could go on about my bias, but it won't help any one.

Skin involvement in Lyme:

I have found no useful references for this.  My own experiences include: pre-treament painful vesicles on the hands and feet similar to Raynaud's or Herpes Simplex...  After treatment for Lyme, vesicles went away, but I got innumerable blackheads on the face, neck, upper chest and back.  In the shower, it felt like sand that couldn't ever be washed off...yuck!  The blackheads progressed from the chest up then after involving the face started progressing down the back to the tail bone.  Ironically, the treatment that 'caused' the blackheads was a common acne treatment, minocycline, which I continue to take.  After over a year of treatment with minocycline, I am now starting to see the blackhead invasion recede (the "sand" is starting to relent). 

I have also started using safflower oil on the face - it is high in lineolic acid an oil our bodies use to clear the pores.  It has seemed to help.  I apply up to once daily.  It seems to help best when I let it sit on the face for 20 mis.

Stress in Lyme:

What I wish they had told me.... manage your stress! Good stress or bad stress is still chemically stress.  Fighting chronic lyme is like fighting the ghost of a ninja warrior and your only weapon is to manage your stress.  Lyme is very sensitive and seems optimally designed to take advantage of stress.  So much so, if your personality tends toward the intense side of the scale, (and that's you adrenaline junkies who won't take second best), your lyme will be much worse than "laid back Lucy".  And as an interesting side note, the bits of info I've gathered from my "horse and dog circles" tells me this personality bias happens in horses and dogs too.  The more intense the animal, the worse and harder to treat the lyme.

I have been affectionately, and not so affectionately, described as "intense".  If I had managed my stress (and didn't try to "get back to normal" so hard) I think my treatment would have had me close to a 100% pre-lyme health years ago. LET THAT BE A LESSON TO YOU!

I am one of those annoying people who tend take on big or new, unfamiliar projects and finish them with ease... As a backpacker, could hike 25 miles a day with 50lbs in hilly, rocky, terrain with ease.  But with lyme, I got to the point, where a long car trip (as a passenger!) was stressful enough to make me 50% bed ridden for 2 months. And going to the grocery store for years was too over stimulating - I'd get disoriented and fear getting lost!!!  So, regardless if you are a "take on the world personality" like me or more laid back (and smarter) individual, IDENTIFY what is going to be a stresser for YOU on any given day. Then, do half of what you think you should do.  Pushing it, stretching and reaching for normalcy will only send you backwards - just like a Chinese finger trap....

MOM!!!!! THIS MEANS YOU ESPECIALLY!!!!! As a mom, you are mother bear, play mate, nutritionist, guardian angel, warning indicator, tooth fairy, achievement high-fiver, birthday dream creator and much more for your children. But with Lyme, getting the PB&Js ready for lunch in the morning may be too much. You MUST respect that. If you don't, you are just going to go in a spiral downward........better....worse....better....worse.......

Managing stress is as important as the medication. Do whatever it takes to get help with chores, mood and outlook management.... If you don't, no medication will ever get you back to who you ARE....  Remember ninjas are sneaky and ruthless - their ghost's are worse...

Back Pain or Weird Pains in Lyme:

In my case, Lyme had me thinking I was chasing a back injury for years – however I could never really pin point what I did to cause the “injury”.  Speaking against the random back injury explanation, was the fact I had very strong core muscles from horseback riding.  So, it was unlikely to be a non-specific fitness issue in my case. 

I used the thermacare heat pads, they were great relief for long car rides and when I couldn’t get away from the pain.  I also tried physical therapy for stretching and strengthening.  But the pain would also come back after doing a specific tasks. 

For example, I would daily scoop grain for my horse.  That requires bending over into a trash can filled with grain and scooping out (no scraping of frozen feed) 3 cups of grain with each scoop.  Its a minuscule amount of work, especially after you consider I carry the 50lb grain bags in to the grain room over my shoulder weekly, which never gave me a problem.  However, that little amount of work, scooping grain, would cause a pain to my mid/lower thoracic area on the same side every time.   No matter how long I didn’t scoop grain or did PT, as soon as I went back to scooping grain, the “injury” reoccurred. (What was laughable was, it seemed like three times of scooping brought the pain back, not one, not five - three.) Seemed like a typical – “all I was doing was… when my back went out” story.  But something told me this is off… this is not quite right… this is not really just a basic back strain… 

The recurring “injury” stopped re-occurring with Lyme treatment, and hasn’t returned.

Exercise & Staying in shape:

http://lymenaide.wordpress.com/2009/09/01/exercise/  (Thanks 'lymenaide' for the link)

Boy do I have good news here!!!!!!!  In the past I have I struggled with this a lot.  I have found cardio-exercise to make me worse MOST but not all of the time. But, I have discovered two signals for contra-indication to cardio:  unusual, dramatic increased breathing rate and/or muscle burn.  If either happens and seems like they wouldn't have happened yesterday.... while doing the same activity, I stop IMMEDIATELY.  If I don't stop, I am flaring/re-lapsing/herxing hard 3 days later. Guys, it took me 12 years to figure this out - I'd heed it hard if I were you, especially if you are in that intense category.

Now the stupendous news!! Trying to get back to "normal" too quickly was one of my problems.  There is a fatigue that comes with lyme which seems to indicate to me the energy delivery to muscles is somehow interrupted.  I struggled hard with this.  I thought if I could find a sport drink with easily deliverable energy I might be able to get around the problem - but I never could find one, they all had simple sugar junk. 

Then, (cue dramatic leading music) I found   http://oscycling.com/ (thank you Syndicate!!!!!!!!!!!!!!!).  The ingredients were what I was looking for!!!!!! I tried it.  Before OS I was biking just 2 tenths of a mile and that would leave me beyond throwing up.  One OS drink and I biked a mile no real problem, no pain, just out of shape.  The second drink I biked 6 miles in under 40 mins - again just normal out of shape stuff.  And I had no herx/lyme backlash!!!!!!!  I could go on an on but I won't - this is another miracle for me.  I am still experimenting but "Sprint" may be what works best for me.

Pilates, yoga and a hippotherapy program has been the best for me. I am now doing some circuit exercise with success and no relapse - I just don't push. I am gradually able to do more and more aerobic activity.  Getting a handle on the cues from my body has seemed to make a big difference. 

Diet in Lyme:

Vitamin D3, Omega 3's and water are all things that seem key to me.  They are good advice for anyone, Lyme or not.  But seem to help support me against my Lyme especially well, to the point of me 'missing' them when I forget to include them in my diet.  Omega 3's are in salmon, mackerel, tuna and flax in high amounts.  I try to get the fish O3's three times a week. I'm not sure what the best source for O3's is.  I will note, there is a risk of mercury in fish even if it is farmed fish - which is bad for the neurological system and not removable from the body.

I eat yogart, flax and rolled oats most mornings which my body seems to miss when I don't eat that way for a few days. As I mentioned in the exercise section OS drinks have made a huge difference for my abilities http://oscycling.com/ 

More info on this type of fish: http://www.bbc.co.uk/sn/humanbody/truthaboutfood/best/omega3.shtml

More info on Vitamin D3: http://www.bmhvt.org/PDF/For_Your_Health/Vitamin_D_3_08.pdf

Lyme vs. Multiple Sclerosis:

Lyme and MS have similar, but not the same symptomatology and prognosis.  Thousands of pages could be written on this by people much wiser on the subject than me.  Here are some MS tid bits though:

http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20091120/W5_liberation_091121/20091121?s_name=W5

My History....

I was diagnosed clinically with a bull’s eye rash. Amoxicillin was started (for 4 weeks) with in 24 hours of the rash’s appearance. I thought I was cured.

But then, I had years of mysterious undiagnosable health problems after that. I was finally diagnosed years later after an arduous terrifying view into the weaknesses of our health care system even at the highest levels of care.

I have now been on minocycline and Buhner herbs for years and improving.

If I had to do it over again....
I wasn't on the antibiotics long enough.  Upon completion of initial 4 week treatment, I should have gone back to the doctor to report I had atypical irritability, impatience and other cognitive discomfort during and persisting after my initial antibiotic treatment - all other symptoms (pain and reduced mobility at rash site) dissipated. Nothing else stands out.


Knowing what I know now....
I can only say, I have received excellent results with a combo of Buhner herbals and Dr. Liegner's minocycline prescription. I know Dr. Liegner has published a case study, representative of the many lyme patients in his infectious disease practice, with dosing information for minocycline in the presence of a erythema migranes rash (in 'The American Academy of Dermatology, Vol 28, 1993). I am no doctor, but if a erythema migranes rash (bull's eye rash) showed up on someone I loved now, I would insist on the Liegner treatment recommendations. (Kids are not included in Liegner's recommendations because minocycline in children causes permanent teeth discoloration.)

Me now...

I am working, horse riding when I get the chance, biking road and mtn, (I now bike 3 miles to work!) looking forward to kayaking and backpacking and doing more. I  look normal, and even better I feel pretty normal, but my balance needs a lot of work!!!  Yoga is really helping with the balance. Improvement is finally starting to happen closer to the speed I'd like which is just way cool.  I'm continuing to get better.

Hope the above helps and better yet, finds you well....