TA DA March 7, 2013

Look at me, only 12 hours since the last post!  Things to be happy about already:  my dog did not pee on the kitchen floor, it’s snowing, I don’t have to shovel or go anywhere today and I love my haircut!  Just a simple gal.

I’m a little disappointed I didn’t sleep better last night as that was my last Vicoden from my root canal a few weeks ago and I had been very happy to sleep a solid six hours for the first time in YEARS.  It’s my own fault (my mind’s fault really) as my PICC line is irritated looking and that makes me nervous which makes me think that maybe something is up again with the tooth that had the root canal as this is how it started last time.  Big time infection in my mouth was the result even though I was premedicated with 2000mg of Amoxicillin, had antibiotics placed in the site of the procedure and was/am on 500mg IV Azithromax daily.  Of course, I don’t have a temperature (it’s at it’s usual 96.2), so I will just put heat on my PICC line site and keep an eye on it.

Oral spirochetes are a bitch, plain and simple.  They invade an injured site in the mouth like a dog with a new bone. The following is an excerpt from a public health site regarding just how oral spirochetes attack (I like their reference to multiply like rabbits more than a dog with a new bone – so be it):

A focal infection is a local infection that expands to incorporate the whole quadrant, then the whole side of the mouth and eventually can cross the midline to incorporate the other side. Basically, the theory says the oral cavity is able to generate particularly nasty toxins that poison the body when you have had a root canal or a tooth extracted. Most dentists still do not understand the Focal Theory; it was studied more in Europe than here. Dr. Weston Price’s great contribution was the discovery that focal infection bacteria are polymorphic, meaning they mutate and adapt and multiply like rabbits in the three miles of dentin tubules that emanate from every tooth. The bacteria become smaller and anaerobic – they can now live without oxygen. They also become more virulent, and their toxins more toxic. Root canals and old extractions are common focal infection sites. 

When you have a root canal, a dead tooth is left in the mouth. The dead tooth lacks a blood supply to its interior. Antibiotics circulating in the bloodstream have no way to penetrate this dead tissue. Over time, the material packed inside the dead tooth shrinks a bit. Now bacteria come in and morph. The tooth has both bacteria and toxins as a result of being dead for so many years and these toxins are infiltrating into the bloodstream. 

In extraction sites, the healing may not take place correctly. If the healing is incorrect, the space can fill in with fatty tissue, dead bone, improper bone, or it can fill in with infected material. All of these processes are wrong and the organ associated with that extraction site will always show this improper healing. The remedy is to clean out the socket, debride it, and remove the ligament that holds the tooth in as well as the dense bony lining of the socket. The other important factor is cleaning up the quadrant (at least) of the mouth where the extraction was performed – cleaning up all metal and any other extraction sites. This is the best way to assure proper healing from extractions. 
Toxins from focal site infections are highly virulent and they tend to go to the organ associated with the meridian upon which that tooth lies. Over time, the toxins’ assault will change the genetics of the organ. However, it has been found that upon proper extraction of a dead tooth and proper treatment of an extraction site, the organ will return to its normal genetics. Bob Jones, an engineer, recently did substantial genetic testing which demonstrated the ability of organs to right themselves.

Did you get all that?  It’s funny as I had a root canal done a few years back before I realized any of this and ended up with a super infection and the molar had to be pulled.  I was put on strong antibiotics, but a few days later I was back in as I felt bone sticking out.  Just as it states above, my jaw bone had protruded and I had the great pleasure of having that carved out.  My mother always said I had to be different.

So now I am left to wonder if I should have just had them pull this molar, too.  Am I just in for more trouble leaving a piece of a dead tooth in my mouth covered with a crown?  I guess I will find out on March 19th when I go back to have the permanent crown put on and we see how the site looks at that time.  Of course, I have a nice metal filling in the molar next to it that probably isn’t helping either, but money is always a factor even with dental insurance.  I am going to try and hold onto this tooth as I am rather attached to them and don’t want another gap in my mouth.  Wish me luck and hope you ate before you read this.  Bet you want to go brush those teeth again, don’t you?

Metamorphosis January 28, 2012

I don’t know what brought this to the forefront of my mind, but I decided that having late stage lyme disease is comparable to the metamorphosis of a caterpillar to a butterfly.  However that caterpillar goes through the larvae stage is the same as the way we get infected without knowing and as the caterpillar grows with all its legs, lyme grows and attaches itself to our bodies wherever it pleases.

I’ve decided that each caterpillar leg represents a test that we have had done while trying to determine what is wrong with us and then for all the follow-up tests; MRIs, EMGs, EKGs, quarts of blood, urine, saliva all to make the determination that finally someone believes we are truly sick with lyme.

When the caterpillar begins its cocoon phase can simply be the time that we are treated with endless antibiotics, IVs, PICC lines, ports, detox diets and baths, herbal remedies and when we least want to be seen or have to participate, so we are wrapped up tight and firmly holding strong to the belief that we are going to get better.

Then the cocoon begins to change and loosen and we battle to rise above all the tests, medications, therapies and the non-believers to shed our walkers, canes, dependency on everyone and emerge as a new being: a butterfly!  Slow to work our way out of the cocoon and then to take flight, knowing that the whole time in the cocoon was a work in progress.  It was not a period of rest; it took immense strength to change completely from that caterpillar to a beautiful butterfly free to fly and experience life.

Maybe it would be easier to stay in the cocoon where it is safe and you feel protected.  Unfortunately there are times that the transformation doesn’t take place and death occurs.  It’s very sad to think that the caterpillar struggled so hard to improve and change and either gave in or didn’t have the strength to finish the monumental task placed in front of him.

I believe I am coming out of my cocoon.  I feel very confused and anxious.  I can’t sleep.  I am capable of so much more than I was when I was finally diagnosed with lyme.  My doctors that believed and my family saved my life; they gave me the will to live and fight with every part of my being.  I cook, I go to the gym to work on my balance and muscle memory without any walking aids.  I am still on too many medications to list, but I know it is a necessity.

Honestly I wanted to give up many times.  That cocoon was so nice.  Everyone was surviving fine without me and I was just a burden otherwise as I needed help with everything.  My younger sister could hear it in my voice and was over or stayed on the phone till I finally admitted where my mind was and how tired I was of being dependent.  My husband and daughters never complained and picked up the slack.

I am becoming that butterfly – I can feel it. The thought of being free of the confines of my house is beautiful.  I don’t know how far I will get on my first “flight”, but I now believe I can do it as I have so many people pulling for me and I have always been a fighter.  I may have to rest a lot at the beginning of my new journey and I am pretty sure I will have setbacks.  But I can’t let that ever stop me from trying to get my life back.

This is the one life I get to make the most of and I am not going to miss any more of it!  To all my fellow “lymies” please stay strong – you are more loved and wanted than you can imagine.

VALIDATION December 15, 2011

OK, so today I am 49 and by now I expected to have run a few marathons, still be working and able to go where I want to when I want to – but we know that hasn’t happened because of Late Stage Lyme.

I named this post VALIDATION because anyone who has been chronically ill and constantly ignored by the medical community at large is aware of how important it is to have someone say, “Hey, you’re not crazy, you are truly sick and have been for a long time”.  That happened to me in February 2008 when I saw a covering internist when I thought I had a blood clot in my calf.  I showed up at his office in leg braces, with a walker and wearing sunglasses.  He asked what was wrong with me and I told him that apparently I was crazy as that is what all the specialists could come up with after multiple tests.  He told me I wasn’t crazy and that he believed he knew exactly what I had – Lyme disease.  I had the necessary blood work done, went and had the blood clot ruled out and went home.  It wasn’t long before I got a call that I indeed had Lyme, but the internist wanted me to see a LLMD (Lyme Literate Medical Doctor) in Connecticut for treatment.  That was validation #1.

My husband, Dave, and I wait over two months to get an appointment with the LLMD.  We then drive 3 1/2 hours to see him.  He spends almost two hours with us going over notes, labs, examining me and said that just from a clinical stand point I was one of the sickest patients he had seen in his 13 years of practice.  Not good news, but validation #2.  Each trip to see him cost $400 out-of-pocket as insurance doesn’t cover visits.  We also had to stay at a motel each time as 3 1/2 hours in the car caused me so much pain that I could barely get out of the car.  More money.  We ate cheap.  We saw him every 8 – 10 weeks over three years.  Then there were all the medications and lab tests which left us with co-pays and some tests not covered.  It is very difficult to treat a disease that is denied by the medical community.

Now I am jumping ahead to yesterday. (My LLMD has been on medical leave since April and I have not talked to him since June, so I was seeing my internist’s partner who has a biochemistry disease and felt comfortable seeing me while I waited to see a Lyme literate neurologist in Massachusetts.)  I started seeing her in July and had to have as many old records and tests and medications available for her to review that I was overwhelmed.  Then came retesting – another Brain MRI to compare to one in 2008, and EMG and nerve conduction test and a neuro-cognitive test done with just me and a computer in a room, plus another 14 tubes of blood.

OK – I’m almost at yesterday.  It was my follow-up to go over all the results.  It looked like it would be a waste of a visit as I had called to make sure they had received all my old records and the office finally got back to me the day before to say they had not received them.  So at 3 pm I am frantically trying to get certain items faxed in time.  To say I was beside myself would be an understatement.  I was tired of disappointment – I almost canceled.

Yesterday we headed out the door at 8 am ready to at least get the test results this doctor had done. We arrived to find out that the faxes had arrived and I felt a sense of relief as she would be able to compare prior results.  Now bear in mind that before I saw this doctor, I had seen neurologists at Tufts and Lahey Clinic for 3 years.  Here come more VALIDATIONS that I’m not even going to number.  My Lyme blood work showed SIX positive bands for lyme – the neurologist dismissed it as did his infectious disease doctor.  My Brain MRI from 2008 showed lesions, but were dismissed; my recent MRI showed that the lesions had not grown in number – meds are doing their job.  My spinal tap showed a protein enzyme that Lahey Clinic ignored and they also ignored me when I told them I actually felt better after a spinal tap (how many people say that).  It turns out that I have swelling of the roots of my nerves at the base of my neck – a type of encephalopathy and that is why the removal of fluid felt better.  Of course, they dismissed this, too.  My EMGs and nerve conduction tests showed left-sided weakness, but Lahey did not think much of it.  My neuro-cognitive testing showed significant problems in the cortical part of the brain and diminished cognitive abilities – SHOCK AND AWE!  Just spend a day with me and you will be entertained.  There were other positive parts to the visit and we ended with me agreeing to go on high-dose Doxycycline for three months along with the Mepron, Biaxin, Plaquenil and Low-Dose Naltrexone that I am already on.  I need to get vitamin B-12 shots, get my vitamin D level past a dangerously low-level even though I try to remember to take high doses, and go for IV’s of other vitamins and Glutathione (a wonderful healing supplement that reduces stress in your body).  The last things on the list are the hardest to do as I don’t drive and there are only so many people available to help out and I am tired of asking.

To think that this all started because of a misdiagnosis over 18 years ago is appalling – that was my first bout of Lyme induced arthritis.  To look back and think of the indicators that I ignored because I figured I was a busy Mom of 3, working, taking care of relatives, doing all the wife things and was just tired and sore because of life.  I’m angry that I have basically lost my 40’s to this disease, to know that I’ll never be 100% and to know that I will relapse because of the severity of my illness – you just never know when that will happen or how long it will last.  I’ve missed being a wife and the type of mother I always was: baking, sewing, driving kids around – I think I deserve it back and that is what keeps me getting out of bed every day, taking my antibiotics and going to physical therapy.  That and the support of my family and friends.  Happy Birthday to me!

I am Kathi; I am not Late Stage Lyme December 7, 2011

I have always been thankful for everything I have in life including 29 years of marriage to Dave, 3 beautiful daughters, 2 sisters and their husbands and children, cousins and many friends.  What I am not thankful for is Late Stage Lyme disease.  I do not understand what lessons I am learning from the chronic suffering, the endless medications, the loss of my ability to work or drive 5 years ago, having to go on disability and still having trouble making ends meet.  I have never waivered in my faith and do believe that there is a reason for everything we go through in life.  I just never imagined this would be an all-encompassing disease involving the help of so many people just to get through the day.

I have learned that I am not indispensable; people can feed themselves, do their own laundry, food shop, etc.  That was important.  I know that I have had to learn to live my life differently and make choices that I don’t always want to, but have to for my own health.  It is very hard to start to withdraw socially as lyme causes excess anxiety and panic, but also it is very tiring to go to parties and gatherings with a lot of people where you need to put on your “face” and try to act better than you feel.  I am not one to want to spend a lot of time talking about how I am feeling.  That has caused problems with family and friends as they cannot read my mind.  Friends love to say, “But you look so good”, and I know they mean well and do not have it in me to tell them that they are only seeing what I want them to see.  My husband has learned a whole different meaning of patience as he has to stay calm while he tries to decipher stories that I start in the middle, why I have trouble writing a grocery list, why I can’t just answer a simple question.  Who wouldn’t be frustrated – I know I am!

I thought I was going along with life as I should: working in Pediatrics for 19 years and loving almost everyday; taking care of elderly relatives as it became necessary and being a good Mom and wife.  I thought I had learned a lot about empathy and have always been humble.  My best quality if you asked me was my humor – to make people laugh makes me happy.  Sometimes my sarcasm was a little over the top, but it hit the mark.  I still have that ability and even try to make the doctors laugh.

As this is my first blog, I’m trying to think of how I will go forward.  Should I try to educate, tell my story or maybe do both.  If anyone sees this and has any ideas they would be appreciated.