WARNING - WHAT YOU CAN'T SEE CAN KILL YOU

by Jim Smith

I am not selling anything here!! This was written for your benefit.

What it is like to have, live, and be treated with/for Lyme disease.  THINK IT CAN'T HAPPEN TO YOU, THINK AGAIN! IT WILL CHANGE YOUR LIFE IN A HEARTBEAT. You have ticks in your area (fact) and they carry Lyme or STARI (fact), they are in a group of the most horrific diseases on earth.  I WANT TO MAKE CLEAR TO ALL, I AM VERY KNOWLEDGEABLE ABOUT LYME AND STARI AND KNOW WHAT SHOULD HAPPEN IN A DOCTORS OFFICE!! If you are bitten (50% of Lyme victims never see the tick, the bite nor the infamous bullseye rash that shows up 60% of the time) and you go to the doctors office complaining of symptoms, THE CHANCES ARE GREAT YOUR DOCTOR WON'T KNOW WHAT YOU HAVE!!! You most likely will be either diagnosed with something else, referred to a specialist (he won't know what you have either) or just sent home. All the while, the disease will be multiplying in and taking over your body.

I am about to tell you a story that is true and I hope I scare the hell out of you as it may save your life!

In 2003, my wife was bitten by a tick.... Was it a deer tick that carries Lyme or a Lonestar tick that carries STARI (Southern Tick Associated Rash Illness) we don't know.... Both have the same symptoms, both have the same treatment regiment..... Lyme can be tested with a blood test (it is unreliable), there isn't a blood test for STARI We don't know how long it was on her, she removed it and five days later was prescribed Doxycycline 200 MG daily for 14 days. On day 14, her doctor declared her cured!! Even though she still had symptoms (achy joints-flu like symptoms). She was referred to an infectious disease doctor (and because of my knowledge with this disease) we persuaded this doctor to prescribe Doxycycline 400MG daily. A blood test for Lyme was done and when it came back negative (Lyme blood tests are faulty and can't be trusted), this doctor declared her cured!!! Horse manure, we had several refills on the Doxy and kept filling them until she finally got in to see a LLMD (Lyme Literate Medical Doctor). By the time she got in to see him, the disease was starting to spread into her brain causing confusion, memory problems reading/retention problems, headaches and it already had spread to her heart. Her EKG was off the charts, her doctor said "highly irregular". He immediately ordered a PICC line be inserted in her right arm that goes directly to her heart. This is a surgical procedure and is done in the hospital. He then ordered Rocephin (a high power intravenous antibiotic) http://www.drugs.com/rocephin.html  and also Flagyl (a high power oral antibiotic for Lyme). Every day for 3 weeks I would infuse the Rocephin into her vein and she would take 3 pills of Flagyl, morning, mid-afternoon and night. She said this was the worst treatment any human could ever endure, it literally made her sicker than the Lyme.... But, every day she got up and dragged herself to work. All I could do was be there, be compassionate, have sympathy and empathy as I watched she declined with Lyme and how terrible this treatment regiment was.

After 3 weeks of treatment, she was better and the doctor removed the PICC line. She improved for several months, then the symptoms returned. The doctor prescribed Amoxicillin (an oral antibiotic) for a month.... But no way would this antibiotic kill off the Lyme bacteria... So, another PICC line was inserted and this time the doctor ordered 6 weeks of Rocephin and Flagyl.... At the end of another horrifying six weeks, she again was better.... Several months later she was declared Lyme (symptom) free and released..... I parenthesized symptom as we don't know if she is cured or if the bacteria has gone into "cyst" form and will someday rear its ugly head again....

The Lyme bacteria is called b.burgdorferi (Bb) and has three forms, spirochete, L-form and cyst. When the Bb invades the body it is in spirochete form. Unlike other bacteria that hang around in the bloodstream and spinal fluid, Bb boroughs deep into our cells, it crosses the blood brain barrier and digs into our bones where it is protected from our own immune systems. Bb is spiral shaped and can easily infiltrate (drill) itself into any part of our bodies. When Bb is in spirochete form, powerful antibiotics are capable of killing it.... But, since this is the smartest bacteria on earth, when it senses the antibiotic, it can morph into L-form or cyst form. When going into these forms, it becomes harder to kill and in cyst form, practically impossible to kill. So, as we take these powerful antibiotics to kill the bacteria, we actually may send them deeper into hiding in L-form and the almost impenetrable cyst form... Flagyl is thought to be able to roust them out of cyst form..... Also, when they go into cyst form, when they convert back to spirochete form they become five.....One spirochete = One cyst form = five spirochetes.... This is why this bacteria is so hard to kill...

My wife was very fortunate, she was bitten, immediately got on antibiotics and when the Doxycycline failed to kill Bb, she was prescribed high power antibiotics (this goes against mainstream medicine's thinking of Doxy 200 MG daily for 14-28 days)....My wife would be the last person in the world to ever get bitten by a tick.... She hardly goes outside only to tend two rose bushes a few minutes each week!! She doesn't even walk the dogs, I do!! Yet, one got her. One tick, the size of a period on this paper, here let me show you (.) that is the size of a nymph deer tick that carries Lyme disease that can kill you. Me on the other hand, I used to go up into the mountains of Tennessee, go into the woods (my own property) and chop down trees!!! At home, you will always find me out in the yard or woods doing something..... Yet, it is my wife who gets Lyme and I obviously cannot get the disease.... Perhaps some of us are impervious to this horrible disease!! We can go anywhere and not get Lyme..... This is what I thought... DONT' YOU THINK IT!

Last August, 2005, I was bitten by a tick.... I thought nothing of it, after all I can't get Lyme! I'd been receiving steroid injections for abdominal pain starting in July and ending in November and also four treatments of steroids in 2003. A person stricken with Lyme can't take steroids as it is fertilizer for Lyme disease to spread!! A month later I was in the ER complaining of left side flank pain (terrible). They said I had a kidney stone. Went to a urologist, he said they were wrong. I also started having a little vertigo. After this, my health started to fail.

Early October, 2005 I would awaken with terrible muscle cramps in both legs and feet. This happened nightly and often two to three times per night. Also, noticed joint pain in my knees, hip, elbows. I am experiencing achy muscles and my physical activities are now somewhat limited. I am not even thinking this could be Lyme...

Later October, 2005, dark circles under both eyes appeared and dropped down to my cheek bones.

December 7, 2005, the vertigo went ballistic, I was literally bouncing off the walls.

December 20, 2005, I accidentally took a pill, Batryl (Cipro), an antibiotic, that was meant for one of our cats. That night I had the very worst multiple times per night head sweats. My head felt like there was a thousand red bumps that were sweating profusely. These night sweats continued every night thereafter and did not lesson. Only my head, no other part of my body..

December 23, 2005, seen by my doctor complaining of severe vertigo and severe night head sweats. He did blood studies, I asked that a Lyme study be included (not thinking at all I had Lyme, but just on the slight chance it might be so because my wife had it) , all were negative.

December 26, 2005, my life changed for the very worse. I could not get out of bed. I felt horrible with the following symptoms: extreme pressure in my forehead and eyes, extreme fatigue, extreme tiredness, poor stamina, severe headache right in the middle of my forehead, difficulty in thinking, concentrating and reading, poor retention, poor short term memory, irritability, disturbed sleep - sleeping too much then sleeping too little. For the next 10 days, I would sleep 12 to 17 hours per night and could have slept longer if I didn't force myself to get up.... Typically, I sleep 6 - 7 hours nightly and cannot sleep any more. Then later in January, I would only sleep 3 - 5 hours nightly for 3 weeks. I knew at this very instant my life changed forever....

December 30, 2005, I went to the ER complaining of the above symptoms. The doctor assumed allergies, but decided to do a CT-Scan of my head and sinuses because I was concerned this was serious, both were negative. The doctor prescribed medications for allergies, they didn't help.

January 6, 2006, I was seen again my doctor. He suggested we wait a week and if symptoms persisted, I was to see a neurologist.

January 7, 2006, I was thinking about my symptoms and realized I completely had forgotten about the tick bite last August. Since I have a good understanding about Lyme disease, and I have continually been concerned of the effects the antibiotic I accidentally took on Dec 20th, Batryl (caused night head sweats and 6 days later full cognitive symptoms and couldn't get out of bed)  had on my health, I realized my symptoms may be caused by a bacteria and might be Lyme. I referred to a leading doctor's protocol of Lyme disease and compared my symptoms to his list. I had eleven symptoms that eventually increased to twenty. I knew this was Lyme and not only Lyme but full neurological Lyme (the worst kind). It was frightening to me I completely forgot about the tick bite and actually had to reconstruct from memory the bite (Lyme dose this, you forget things quickly and you never remember them later on). My biggest worry now was trying to find a doctor who would treat me.... You can't just go to your doctor and get diagnosed or treated, nope not that easy.... So, what would be worse, the disease or the politics of finding a doctor to treat me (I won't go into the politics, that in of itself is a lengthy thesis).... Either way, I knew my life had changed and I was now living in Hell on earth with this disease.

January 16, 2006, Realizing I would have a hard time finding a doctor to help me with Lyme, I researched alternative methods of dealing with the disease. After reading about the effects of salt on bacteria and beneficial effects of vitamin C on the immune system, I started a regiment of (pure) Celtic sea salt (not table salt!!) and vitamin C, 2 grams each daily and increased the doses steadily during the next few weeks.. Within four days, my vertigo was gone. In a week, my night head sweats stopped. Within a few weeks my cognitive issues improved a little, to the point I could write an e-mail and understand what I was writing and my heart palpitations eased. I am currently taking salt 12 grams and Vitamin C 14 grams daily.

February 28, 2006, continuing to worsen and now I have 20 symptoms, I saw my doctor. He suggested I see an infectious disease doctor. My wife called every infectious disease doctor in our area and five said they only treat HIV, four weren't taking new patients, a group of six doctors would treat me, but only if another doctor diagnosed me first with Lyme disease or I had a positive blood test (remember, Lyme blood tests are flawed and someone with a negative test may very will have Lyme). If I was bitten by a Lonestar tick and had STARI, no way could I have a positive blood test, there isn't one!! Oh yes, the medical politics of Lyme were brewing.... I could go to NY to see this country's leading Lyme doctor, but he isn't taking new patients and I am too damn sick anyway!!! Everyone in the world who has Lyme and money wants to get into to see him!!

March 15, 2006, I was seen as an emergency patient at Mayo. Mayo’s protocol is if a doctor suspects Lyme, treat with oral Doxycycline 200 MG daily for 30 days. If at that time symptoms are gone, it was Lyme. If symptoms persist, a referral to a neurologist for a neurological diagnosis not a Lyme diagnosis. From my research, I know neurologists don’t diagnose or treat Lyme and while oral Doxycycline will treat some symptoms of Lyme, it will not treat cognitive/neurological symptoms and it did indeed nothing to help these issues.

May, 2006, I saw my doctor (GP) again. This was a return visit scheduled when I saw him in February. He walked into the exam room, my wife and I were sitting there and he said "I scheduled this appointment so I can check your blood pressure." Our teeth almost dropped out of your mouths!!! I said, I am dying from Lyme disease, can't find a doctor to treat me and you want to check my blood pressure!  I check it everyday and it is textbook! Why have you just left me hanging without medical help for my Lyme disease? He looked at me and said "I told you to contact an infectious disease doctor for treatment." I responded "my wife and your referral person called everyone in this city and none would see me, a group of 6 doctors will see me if you or another infectious disease doctor give me a diagnosis of Lyme.... He responded "I am not capable of diagnosing later stage Lyme disease and I don't believe no infectious disease doctor will see you!" My wife piped in "every one of them said NO." I said, why don't you make the appointment for me....

Two days later I received a call from the group of six doctors saying they would see me.... This will be the seventh doctor I am going to desperately trying to find help! The appointment was set for yet another month away in June.... During this time I deteriorated much further, the Lyme had taken over my brain completely and I could barely function. Walking became a chore, I didn't leave the house I was much too ill. My days were spent researching Lyme, watching some TV and sleeping, occasionally I would be able to walk the dogs, but nothing else. I could barely pay a bill as it took too much energy and I could hardly think clearly enough to do it. Sounds impossible doesn't it, trust me it is the absolute truth and this comes from a guy who used to be very physical and active.

It's finally June and I go to see this infectious disease doctor... Now I am very ill and wonder even if I get treatment, is it too late? He evaluates me, I finally get a diagnosis of Lyme disease even after giving him my latest blood test done at the health department that shows I am negative for Lyme. He knows these tests are suspect.... I am elated someone finally realizes what my illness is besides me and my wife. I can only wonder what the conversation between my doctor (PCP) and this infectious disease doctor was, after all, this doctor 5 months ago wouldn't see me unless another doctor diagnosed me with Lyme or a positive blood study..... Oh well, water under the bridge at this point....   I am so happy at this point!! Then, he orders a PICC line and Rocephin 1 gram daily and Flagyl, 1500 mg daily every day for 4 to 6 weeks. My heart sinks (not sings), I know this dosage of Recephin is too little.  I am like a library when I go to a doctor about Lyme, I've studied this disease for the past 3 years and every waking hour for the past 6 months... I quietly open up the treatment protocol of one of this country's leading Lyme experts and it calls for 2 grams daily, 4 days per week, for 14 weeks.... He reads it, leaves the room, reenters and says okay!! In reality, I will be receiving a powerful dose of two powerful antibiotics... THIS DOCTOR IS CAPABLE OF THINKING OUT SIDE OF THE BOX AND OUTSIDE OF MAINSTREAM MEDICINE!! For sure, a needle in a haystack!! Mainstream medicine says to prescribe Doxycycline for 14 - 28 days and you are cured!!! Horse poop!! They send you home to die.

Last Monday, June 26th, four days after I started taking the Flagyl, I went to the hospital and a PICC line was inserted. I went to the doctors office (he has an infusion center where nurses administer IV antibiotics) and the nurse prepared the PICC line for the Rocephin infusion. The first dose made me sick..... Now, this will be done twice daily at home, my wife will administer the Rocephin via the PICC line and after each treatment I am horribly sick. Once a day with 1 gram is terrible, but I am taking 2 grams twice a day and my days are horrible.... I am sick from Lyme and now I am much sicker with the antibiotics than I was before taking them.... Four days on, 3 days off the Rocephin, for 14 weeks and everyday for the Flagyl.....

So, my first week is over, it ended on Thursday.... Friday I went to the infusion center and they changed my bandage.... Afterwards, for the first time in 6 months I felt like eating breakfast out with my wife..... Just one week of this treatment and I already am feeling better. If it wasn't for this treatment, I couldn't possibly think clearly enough or have enough energy to write this e-mail warning you of the dangers that really do lurk all around us....  I can think better and I can now do physical things again, like mow the lawn and walk the dogs.... Is it possible at the end of 14 weeks I will be whole again? Or will I relapse as many do and find myself dealing with this living hell called Lyme disease again...  I really don't know, time will tell....

I know quite a few people who've been stricken with Lyme disease for 10-20-30 years!! No diagnosis until recently or still undiagnosed or wrong diagnosis and these folks are suffering terribly. Antibiotics at this stage may not help and they must now live with this terrible disease.... Some I know are taking 12 grams of salt & vitamin C daily and are finding relief..... Others buy rife machines and try to get relief. Yet others still go to doctors and do not get diagnosed  with Lyme, but rather Chronic Fatigue Syndrome, Fibromyalgia, MS, Lupus, ALS and other diseases that have absolutely nothing to do with the persons true illness Lyme disease. AND, some of these people will be given steroids for their respective diagnosis's and all along they have Lyme disease and the steroids merely fuel the fire.... Very sad.

Typically, if you are bitten by a tick (and the tick carries Lyme or STARI) and you get to a doctor quickly, a simple regiment of Doxycycline 300 to 600 MG daily for 60 days will kill the disease in 80% of those stricken and who seek medical attention.... The problem, your doctor most likely will prescribe Doxycycline 200 MG daily for 14 to 28 days.... This is too little and too short..... And this is where the politics of Lyme sets in and that's another topic..... For the 20% who get the initial Doxycycline treatment, they as my wife will continue to worsen until they can find a doctor who understands Lyme disease and it's appropriate IV and oral antibiotic treatments. A smaller percentage of these will not respond to the even stronger treatments and will have the disease for the rest of their lives....

Lyme ticks are carried by every warm blooded animal.... They don't seek out humans to feed on, only any warm blooded creature! If you are nearby, you are their meal.... Without getting into a big tutorial on the life cycle of the tick, just keep in mind they are born, typically attach themselves to the white footed mouse (we all have 'em), drop off when done feeding, then attach themselves to another animal such as a deer, bird, rabbit, etc., These animals carry the ticks and they drop off on your property!! Their next meal will be you if they attach themselves to you..... Deer ticks (Lyme) will not travel to find a meal, they wait for it to come to them, then they simply hop on..... Lonestar ticks on the other hand will travel up to 30 feet to get at their meal.... If you are bitten by either tick, you won't feel it.

Here is a good thesis on Lyme disease written by John D. Bleiweiss, MD. This is a good read for all....

http://cassia.org/essay.htm

I know this was long, but it was the only way I can effectively communicate to you the implications of Lyme and STARI diseases.... My wife suffered through this horrible disease and now I am... She was treated early on and had great success with the antibiotics. I am being treated much later on and the prognosis is unknown but hopeful (I actually may have been infected as early as 4 years ago and possibly even 15 years ago as I have been ill this long and have remained undiagnosed).... In the last few weeks of my illness, I knew somehow I needed to communicate with others what I knew about these horrible diseases.... So, now you have a good idea of what these terrible diseases are and lastly here is a list of typical Lyme & STARI symptoms.... Typically, the first symptoms are "flu like symptoms," that don't go away and then other symptoms start to show..... You won't have all of these symptoms and seldom do two people have the same symptoms, this is a very tricky illness....

Best wishes,

Jim Smith