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

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) believes in treating for Lyme only when there is a positive ELISA and Western Blot test (tests with a combined accuracy of about 50%).  The IDSA states long term (>6 mos) treatment with antibiotics is not shown to be warranted or responsible medicine.  The IDSA panel involved in creating the current Lyme guidelines has been under investigation for anti-trust issues by the CT Attorney General.  The resulting hearing into whether the IDSA Guidelines should be re done is currently being evaluated by an independent non-IDSA panel per legal agreement.

Hearing by non-IDSA panel into whether IDSA's Lyme Guidelines should be re done:  http://www.idsociety.org/Content.aspx?id=15026  (per the legal agreement this will be on the IDSA website until Jul 10 - after that I'm sure the ILADS site will still have it available for viewing).

 

 

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 (racing heartbeat)/brachycardia (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 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 dangerous is it ONLY happens in the EARLY stages of lyme.  So, sometimes heart block is happening in the complete absence of other Lyme symptoms.  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.) If it doesn't kill you, likely, no medical professional will find anything or think Lyme, and even if they do - they only have a 50% chance of confirming it with a blood test, (better chances with spinal tap - but I was synovial negative).

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 is happening is the vagus nerve has some how been affected by Lyme.  Whether the affect is mechanical or neurological, I don't know.  But what will happen is you have difficulty keeping the right blood pressure in your body as you move around.  This can happen to the point of thinking your heart stopped (I've been told its likely at a BP of 20 or something).  This is what happened to the blond girl (Sea World Trainer) in the movie 'Under Our Skin'.  I've had this symptom, my heart "stopped" I lost all motor control within 6 seconds and my heart re-started just as I was about to go completely unconscious.

 

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.  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 illness 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, some time 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, 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.

There are few resources, again 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 12 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 haven't come back, as long as I am taking my antibiotics correctly 12 hrs apart. 

Restless Leg Syndrome can be a misdiagnosis for Lyme.  If your legs don't jerk at night, 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.  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, 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).

 

Stress in Lyme:

What I wish they had told me.... manage your stress! Good stress or bad stress is still chemically stress.  Lyme is very sensitive and seems optimally designed to take advantage of stress.

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 a year ago. LET THAT BE A LESSON TO YOU!

I am a very aggressive "take on the world" type personality, 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 Adirondack terrain with ease.  But 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....

 

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 explaination 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 about 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 thorasic area on the same side ever 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.  Everything pointed to a classic back strain, but something told me this is off… not quite right… not really just a back strain… 

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

 

 

Exercise & Staying in shape:

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

I have found cardio-exercise to make me worse MOST of the time. However, I have discovered two signals for contra-indication to cardio. Unusual, dramatic increased breathing rate and/or muscle burn.  If either happens and it seems like they wouldn't have happened yesterday.... doing the same activity, I stop IMMEDIATELY.  If I don't, I am flaring/re-lapsing hard 3 days later. Guys, it took me 12 years to figure this out - I'd heed it hard if I were you.

Pilates and a hippotherapy program has been the best for me. I am now doing some mild 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 over about 6 months. 

 

 

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 - with is bad for the neurological system and not removable from the body.

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 symptomotology 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 another antibiotic 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 some one 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...

Although I am not working, riding or backpacking, I am stacking wood for the winter, getting less wordy (what do you mean you can't tell!!) and tackling house projects.  I am now snowshoeing and have set a goal to get to 7 miles by end of March (I'm trying to beat Dr. Sears :) in his goal to run 13 miles by then.).  I could probably ride, but as of now, I have no horse partner to ride - but I'm looking.  I have a potential retired FEI horse to ride and a friend with a 1st level horse who needs riding.  We'll see.   Nothing is happening at the speed I'd like but, its so much better than where I was and I'm continuing to get better.

 

Jan 18: 1/4 mi, 400' elev., under 10 mins.

Jan 21: 3/4 mi, 600' elev., in 15 mins.

Had to abandon 7 mile goal - Lyme messed with my way of moving and my knees are starting to hurt.  I need remedial movement training!!! :)   I am still snow shoeing lightly and doing pilates and light circuit training.  I'll get there...

 

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