My nightmare began in 1993 when I was diagnosed with Lyme disease. Approximately 3 weeks after having 2 very tiny ticks removed, I developed reddish circular rings behind my knees, the sites of the bites.
Subsequently I developed a rash on my torso, which lasted for a few weeks, along with low grade fevers, severe aches and pains, and the most intense fatigue I have ever known.
My physician at the time said he
did not want to wait for results of the Lyme test, and started me on Tetracycline for 7 days. Some of the symptoms resolved, although the fatigue and headaches did not. Also, my WBC has remained elevated ever since. I later developed horrendous "jolts" in my right leg and foot, as well as a numbness of the skin on my thigh.
I was placed on more oral antibiotics, which seemed to help for a while, although I had to keep switching from one kind to another. When I started to develop a skin rash from Zithromax, it was decided that I could best benefit from IV Rocephin. This was after I had seen a neurologist, and an infectious disease doctor. After a 6 week course of treatment, I felt fantastic, although over the course of several months my symptoms reappeared. Another trip to the neurologist, and this time a spinal tap to rule out MS was done. The results showed Lyme disease, even though all blood work l had done was negative.
A 4 week course of IV Rocephin was finally approved by my ins. co. Again, I showed improvement, only to relapse after several months. This time my symptoms included memory loss, difficulty with speech at times, and severe pain in my hands, not to mention dizziness. Treatment with heavy-duty pain medications and
antispasmodics helps somewhat, on a limited basis. As an RN, I could no longer function in my work, and was put on temp. disability. My physician ordered an 8-10 week course of Iv Rocephin. A PICC line was put
in and treatment started, only to be abruptly stopped by my health ins. which claimed there is no such thing as chronic neurological Lyme disease.
After threatening my physician and questioning his medical competency, they sent me a list of doctors that they said would properly diagnose and treat me. I made an appointment, confirmed the appointment, and
kept the appointment. I waited in the doctor's waiting room, filled out the necessary forms, was taken into another room where I was weighed and had my vital signs taken. After a short time, I was told the doctor
refused to see me because I never made an appointment.
I was told that I would have to make another appt. and that I could not be seen for at least a month. I went home, and decided to try a physician at the
second hospital on the list. I made an appt. and was seen by an infectious disease doctor who sent me to another neurologist, who again required me to have another spinal tap. After having to wait for over a
month to have the procedure scheduled, it was finally done, and I was told to return to the doctor's office in 2 weeks to review the results and plan a course of treatment.
That appointment was yesterday. Instead of results, the receptionist asked me why I did not have the
spinal tap done! I told her it was done, and she could check with the doctor, who verified that he himself had done it. After an hour of making many phone calls, I was told that the hospital where the
procedure was done had no records of my ever being there for any procedure. The doctor sent me home, stated he did no know what was going on, but he would check into things and get back to me.
When I
called his office this morning, his receptionist said it was not their fault things were lost, and she would try to look into the matter when she had time. The doctor was unavailable to speak to me. It has now
been 4 mo. since I have had antibiotics, and every symptom has returned with a vengeance.
I have just started my application for social security disability, and don't know how I am going to be able to afford health insurance after a few more months. I feel like I am getting worse on a daily basis, and am scared to death of what the future holds.
At the time of my life when I felt that my children were on their own, and I would be able to work and save for my retirement years, I find that not only am I not able to work, I am getting deeper in debt than ever before. My husband is trying to be as supportive as possible, but this is taking a toll on my entire family. I never know from one day to the next how I am going to feel, or even if I will be able to stay awake long enough to do anything. Short of the grave, does this ever stop?
Also, what can I do to get the proper care that my attending physician and I agree that I need? Any ideas would be gratefully appreciated.
Thanks
A good March to everyone! This month we're going to be picking up where we left off in last month's column, discussing several more herbs which contain natural antibiotic properties. However, before we begin I would like to urge you to visit the Environmental Health Network's Web site.
A Lyme suffering friend of mine who's also afflicted with MCS (Multiple Chemical Sensitivities) alerted me to a petition of theirs which concerns something which we are all exposed to on a daily basis -- fragrances. "Fragrances adversely affect the health of people who live with a wide variety of respiratory diseases, with migraines and other headaches, with AIDS, cancer etc.
The Environmental Health Network
Last month we discussed two herbs which contain antibiotic properties: artemisia annua and cryptolepsis.
In this month's Herb Corner we'll be covering two more: usnea and grapefruit seed extract.
Grapefruit Seed Extract
Grapefruit Seed Extract is from the Rutaceae plant family. The seeds and leaves from this plant have the
following actions: antibacterial, antimicrobial, antiseptic, antiviral, antifungal, anthelmintic, and antiparasitic. Like both artemisia annua and cryptolepsis, grapefruit seed extract is truly a broad-spectrum
natural antibiotic, capable of killing a wide variety of pathogens. Unlike usnea, which has not been shown
to be effective in the treatment of gram-negative strains of bacteria, GSE has been shown to kill both
gram- negative and gram-positive strains.
In fact, GSE has been shown to be effective in treatment of literally hundreds of different illnesses including the following: Shigella, Staphylococcus, Pseudomonas aeruginosa, Giardia lamblia, Diplococcus pneumoniae, Haemophilus influenzae, Mycobacterium spp.,Campylobacter, Candida albicans, Escherichia coli, Streptococcus, Salmonella, Klebsiella, Proteus, Cholera, Chlamydia trachomatis, Trichomonas vaginalis, Legionella pneumoniae, Helicobacter pylori, herpes simplex 1, influenza A2, and measles.
Grapefruit seed extract can be used both internally and externally.
External Use: GSE can be used externally as a disinfectant when added to water. To use in the cleaning
of hands and other parts of the body, mix up to 40 drops of GSE extract in a quart of water. To treat external wounds to the skin, mix between 20 and 40 drops of extract in a pint of water.
Internal Use: GSE can also be used internally in to treat chronic infections. Mix 3- 15 drops of extract in citrus juice up to three times a day. GSE can also be used as a nasal spray as well as douche.
Nasal spray: To use as a nasal spray, fill nasal spray bottle with water and add up to 5 drops of GSE extract.
Use spray up to six times a day.
Douche: Mix between 6 - 12 drops of GSE extract in one pint of water. Use twice a day as a douche for
up to a week, in the treatment of yeast infections.
*Caution -- In much the same way that synthetic antibiotics can kill off the naturally occurring flora which
exists in one's body, so can grapefruit seed extract. Consequently, if this herb is to be used long-term in the
treatment of a chronic infection, supplemental acidophilus should be taken to introduce the "good bacteria" back into one's body. People using GSE should be aware that they may have, or may develop an allergy to this herb. Should you develop a rash or experience any other odd symptoms while using it, discontinue use immediately.
***Caution should be taken when using herbal supplements. Many of these while harmless at their recommended dosages, can become dangerous when taken in larger amounts. In addition, some people may have or may develop allergies to an herb that has had no prior reputation for causing allergic reactions. Moreover, long-term use of herbs which contain antibiotic properties should be supplemented with acidophilus, because they kill off not only the bad forms of bacteria in our bodies, but also the "good bacteria" as well. If you feel that you need to increase your daily intake of a particular supplement, please speak with either your physician or someone who is knowledgeable with regard to pharmacognosy (the study of drugs derived from plants).
Thank you, for your continued responses to "Steve's Corner." Many have requested information regarding "Nicotine" and the Lyme patient, that is, smoking, and what "harm" it poses to those of us with Lyme Borreliosis!
The media has been blitzed the past couple of years as to the big tobacco manufacturers, and their engineering of tobacco products, so as to enhance "Nicotine" to make it more addictive to the user.
Nicotine, like alcohol and caffeine is a drug! Smoking, however causes "more" harm to individuals than just the nicotine in the product. The tar's and other chemicals join into this most destructive habit to all people. Those of us with Lyme Borreliosis need to consider the consequences of smoking as to our illness, "together" with good health in general!
"NICOTINE & THE LYME PATIENT"
What is nicotine? Nicotine is a "potent," naturally occurring alkaloid isolated from the tobacco leaf and found in tobacco smoke. It is the substance for which the nicotine substrate of ACH receptor was named. Nicotine is one of the "most toxic drugs known to mankind"!
Absorption: Nicotine is quickly absorbed through the mucous membranes. About two-thirds of the nicotine in tobacco smoke is absorbed through the oral mucosa, and if a smoker inhales, nearly all the nicotine will be absorbed.
Nicotine is quickly metabolized (broken down) but not fast enough to prevent the drugs marked effects. Nicotine and its metabolites are excreted in urine (bladder cancer) and maternal milk, (breast feeding).
Nicotine affects our cardiovascular system, muscles, Central nervous system, and the list goes on and on. It causes vasoconstriction, thus increased heart rate and the increase of the hearts contractions, (makes the heart work harder) {thus heart failure in time}. Nicotine is believed to cause the myocardium of the heart to become more sensitive, and irritable to arrhythmia's caused by catecholamines.
Tachycardia (increased heart rate), and hypertension, (high blood pressure) are caused by smoking together with peripheral vascular diseases, as well as to the heart, brain, and kidney damage in patients with atherosclerosis or diabetes.
The GI and urinary tracts, as well as exocrine glands, are normally under major control by the parasympathetic nervous system, thus stimulation intensifies, causing diarrhea (bowels), pupillary constriction (eyes), increased secretions from mucus, salivary glands, and sweat glands, stimulation of the GI and urinary tract motility. Gastric acid secretion is increased in the stomach. The bronchi constrict due to smoke irritation, and pts. with asthma or other pulmonary disease (lungs) are at even greater risk! Increased gastric acid in the stomach causes ulcers, or worsens and existing stomach problem and so on!
Nicotine stimulates the nicotinic receptors that activate skeletal muscles, causing tremors, and twitching....like we need more of this eh? Nausea and vomiting are common with use, increased respiration, less oxygen to red blood cells and increased CO2, that's why people who smoke are out of breath and have more red blood cells so as to make up for lost oxygen, and guess what? Spirochetes thrive in an environment that has less oxygen, think about it!
"INTERACTIONS"
Nicotine and other substances in tobacco, can stimulate the livers drug-metabolizing enzyme system. Simply put: It can negate drugs we are taking to treat the Lyme Disease! Or, lessen their ability to assist us by lowering their blood levels and their effects! Example: Those on bronchodialators for whatever reason, and who continue to smoke may require theophylline dosages that are 50% higher than those needed for symptom control in otherwise identical non smokers!
Are you taking vitamins? Smoking will "decrease" their effects!
Do you have lipid problems, High cholesterol, Smoking will worsen this condition!
Our lungs provide an important function, they provide us with the necessary oxygen needed to carry out our daily activities, and eliminate CO2. But there is more to it than this: Within the lungs, certain cells needed in fighting disease are manufactured, smoking prevents some of these cells from maturing and thus helping us fight disease, and weakening our immune system.
Since nicotine constricts our blood vessels, our blood, containing oxygen cannot deliver the oxygen 02 required by all our cells. Many have fatigue, are short of breath, are dizzy, light headed, have stomach problems, and the list goes on and on. Smoking will only "Worsen and magnify" these and many other conditions. We have to ask self: Is it worth it? Today, we are reading much about Raynaud's syndrome with regard to Lyme pts. that is; a syndrome like feature affecting Lyme patients! Poor circulation, sexual performance, cold hands, feet, temperature changes due to circulation and other abnormalities associated with Lyme can only become more acute and thus chronic in the long term with smoking,
The use of tobacco in any form, smoking, chewing, inhaling, pipe-cigars, etc., are all "An Enemy To Lyme Patients"!
In closing, once again it is impossible to include "everything" regarding tobacco, nicotine, in a short news letter, but suffice to say: We need to ask ourselves is it worth it?
For those who smoke or who have loved ones who use tobacco, please keep in mind the following: Today there are many devices, patches, etc., that can and do assist the individual who is "hooked" on nicotine to assist them in getting off all together, so ask your Physician/Pharmacist for information regarding such protocol's.
Nicotine is a drug. There is withdrawal! But there is also help. Until next month, keep the questions/suggestions coming in and remember "spring is just around the corner and the ticks are all ready lurking, so, protect, and check!" Best to all, Stephen.
This is so good and so easy to make. You can use your own BB-Q sauce or use your favorite ready made brand! This is great with cole slaw.....:)
Try this on a toasted roll or just mound it up on your plate!
3 or 4 lbs pork roast
2 bottles BB-Q sauce
I do this all in the same pan, first sear the meat the add one bottle of BB-Q sauce and about 1/2 cup of water...cover in put in 325 over for 3 hours. I like to turn it once.
Everyone oven is different you know it is done when with two forks you can pull the meat apart. When done pull it all add more about 1/2 bottle more BB-Q sauce. Reheat for about 10 minutes.
If you want to make your own Barbecue sauce
1 jar chili sauce one large onion
1 jar currant jelly a few dash of liquid smoke
a little hot sauce a tad of butter
Put butter in sauce pan cook onions till translucent, add chili sauce and currant jelly. Stir well, add the hot sauce and liquid smoke. Of course you can add what ever you want to this; some garlic powder and cumin add lots of flavor. Enjoy
If anyone wants to share a recipe to put in the column please do!
I have a great idea for another one of those reality based shows! You ready for it? Here it is: America's Funniest Disabled. The show has been in the works in my mind for quite a few months. It was aptly named by my home health aide, Ana. She was in the kitchen preparing a smakeral for her patient when suddenly she heard a thump coming from the direction of my room. Upon entering the room she saw a torso sprawled on the floor next to the bed. The only part of me visible was my torso.
Now I have to say that for me, falling out of bed is not all that unusual in my days work as a
full time lymie, however, this time around the creatively and artistry involved in the execution of the landing was to be commended. My entire upper body was wrapped, burrito style, in my floral comforter. After
having assessed the situation properly as an aide should and having decided that I was not suffering, owing to the fact that the comforter burrito was trembling violently with my laughter, Ana set about to find my head. This turned out to be no easy task. She kept making tsk tsk comments saying, "oh well guess it must have fallen off, but her predominant voiced thought was...Damn i can't believe i missed this!! HOW did you do this?
Where's the video camera? You belong on America's Funniest Disabled! Of course this comment did nothing to stem laughter of the convulsing burrito that was me.
So having recovered and satisfied with the 6.5 score given to me by the judges for execution, I decided this idea had merit! Think about it fellow lymies!! How many times a day do you say or do something, completely unintentionally, that causes people to stare in wonder or politely try to control their guffaws. You know what I'm talking about. Its those times when you're brain plays tricks on you and your tongue suddenly goes full throttle into reverse causing you to say something like MAN oh man is it HOT out here, during the blizzard of 2001. Or those times that you are merrily driving someplace that you go every single day and suddenly you have to turn to your spouse and say, "Um, WHERE are we?"
Or when you are halfway through dripping the bag of saline before you realize that you forgot to unpop the cork and mix the rocephin! Or when, feeling irritated and impatient, you stand outside in the rain calling to that idiot dog who's taking his sweet time doing what he needs to do out there, only to realize when you finally give up and go inside that there fido is, sitting peacefully by the fire looking up at you as if to say, "What on Earth are you yelling about? I'm trying to sleep!"
We need to catch these priceless moments on tape! We can show these spirochetes who's boss!! Start making a profit on em!! And of course when all our non-lymie friends and relatives see the clip we can insist that we, of course, did it on purpose cause we thought it was so funny!
To All,
~~~~~~~~~~~~
Permission to distribute:
I received this email and was given permission to post this. I ask
all of you, and especially New Yorkers, to participate in Lobby Day
for all those who can't.
Sincerely,
Regina
I met today with Senator Kemp Hannon at his Law Office in Uniondale
at the EAB Plaza. I was there with Dr. Brian Fallon, Pat Smith,
Debbie Siciliano & Diane
Blanchard from Connecticut, as well as Diane Leary of LILA.
I presented him with a notarized copy of my wife Cathy's Death
Certificate, which lists one of the causes of her death as " Tertiary
Lyme Disease ". I appealed to him & told him that I have already
buried my wife, & I don't want to also have to bury my child ( my 21
year old daughter Michelle has Lyme which I believe my wife
transmitted to her during her birth ).
I believe Diane Leary is making reservations for both of us on the
bus for the Rally on 3/27. I believe that until today, he was not
aware that Lyme can kill, & I would
like nothing more than to be able to be a speaker at the Rally and
get the message out to as many Legislators as possible.
If this is not possible, my daughter & I will still be making the
trip to help in any way we can ( if just to be 2 more bodies to help
increase the numbers ).
Sincerely,
Peter Klapak
Note: In a sad turn of events, his daughter has become too ill to
attend, so they can't be there with us. I ask that New Yorkers
please try and fill their space on the bus, and carry their spirit to
Albany.
I know there are a myriad of issues for anyone living with this illness. It is unthinkable that people who have had their lives so dramatically impacted by this affliction should have to go to the extent that we do. Not only in order to find treatment, but that we must also appeal to each other to put out more energy for all that must be done. OPMC investigations, Lobby's, Rally's, and yes, even protecting our doctors.
I know how unfair it is. I live with it's impact every day like all of you. I, too, have lost every outward part of my life that holds meaning for most people, as so many of you have. There's no career that I spent so many years achieving; no savings that I broke my butt to get; no good credit history that I had developed and deserved by being responsible, no house to go away to. Working 18+ hours a day for much of my adult life seems like it must have been someone else. I have in the past been angry, unempowered, hopeless, you name it. After all these years of total disability, I also know that some have lost even more.
We can't just roll over. We can't allow this to happen. I am still here, not because of the cruelty of powerful alliances, but because of some kindness. Some of it by just a few friends and family. And the kindness of a couple of doctors that haven't made a fortune from me. Why did they continue to treat us? I don't hear any Nobel prize uttering ongoing. There's no huge incentives from drug companies or insurance companies, no call from the W.H.O. to irradiate the problem, no senior professorships at the university coming up too soon. So why do they continue to try and help us?
DO NO HARM. They took an oath, and in sticking by it, we found our way to them. Gee, what a great reward!
The most ugly political disease of this century. A disease that despite so many hours of trying to help patients, they can't yet find a cure. Where they are persecuted by peers, ridiculed by their professional organizations, and prosecuted by the "good ole boys" hanging on to their last chance at power. So go the czars. Do you think that we can find just a little room to show up for them the way they have shown up for us?
I know it isn't fair, or easy, or better than a good nap because you can hardly get
through some days. It is critical, though. We must take care of the unfairness, but we must first make sure these guys are still around. For us, for our children, for the neighbor who will call you for information after they've been bitten.
So that perhaps, in this generation, we can stop the forward progression of unethical treatment. Even if it is one doctor at a time.
Please get involved, while there are still enough of us, AND enough of them
to be involved with.
HLDF
c/o Monica Miller
PO Box 410
Kinderhook, NY 12106
-and-
BLDF
c/o Monica Miller
PO Box 410
Kinderhook, NY 12106
Sincerely,
Regina
neurochem1@aol.com
~~~~~~~~~~~~~~~
Submitted by: Neurochem1@aol.com
Dr. Richard Horowitz is a Board Certified Internist practicing in upstate, New York for the past 14 years. He is the Assistant Director of Medicine at Vassar Brother Hospital in Poughkeepsie, and is also on the Board of Directors of ILADS, The International Lyme and Associated Diseases Society.
Dutchess County, New York, the area where Dr. Horowitz practices, has the highest rate of Lyme Disease in New York State, and the second highest rate in the nation. Due to the increasing number of patients coming to him with Lyme Disease, he has developed a specialty in the treatment of tick borne disorders.
In order to accommodate the growing numbers of Lyme patients coming into his practice, he opened the Hudson Valley Healing Arts Center, an integrative medical center, combining classical and complementary therapies. This center was opened 3 1/2 years ago, and as of March 2000, Dr. Horowitz and his two Physician Assistants have treated over 3000 Lyme patients.
A great number of individuals with Lyme Disease continue to experience chronic, debilitating symptoms, and often cannot find support with their existing physicians and the HMO environment. Due to this, Dr. Horowitz patient population spans the entire country. It is not unusual that his patients either fly into New York, or drive long hours to receive compassionate, responsible care for their illness.
Dr. Horowitz is firmly grounded in rendering this type of care, and it is the core of his medical practice. Through the spiritual teaching he has received for over 20 years, he deeply believes that compassion needs to be the foundation of all action, and therefore, proper medical treatment. He has learned from his mentors that one always needs to ask questions to get to the cause of an illness, rather than treating just the symptoms.
This evolution led Dr. Horowitz to begin attending the International Lyme Conferences held by the Lyme Disease Foundation in 1994, and it culminated in his participating as a presenter at the 11th, 12th, and 13th International Lyme Conferences. He was also a speaker at the 12th International Lyme Conference. His talk entitled "Chronic Lyme Disease: A Symptom Complex of Multiple CO-infections," centered on the role of Babesia microti in contributing to chronic illness. Dr. Horowitz was directly involved with the effort to have ticks from his area sent out for laboratory examination. The results from one lab were that a statistically significant percentage (approximately 30%) were found to be infected with Babesia microti, a malaria-like parasite. He also sent serum specimens of 192 patients for PCR analysis for Babesia microti, which yielded a PCR positive result in a similarly significant percentage of these patients.
This led Dr. Horowitz to do research on several different drug regimens for Babesiosis, since the standard treatment, Cleocin and Quinine is often only partially effective, and poorly tolerated. He has since presented abstracts on the use of Atovaquone and Azithromycinin with high dose Septra combination therapy for Babesia microti, and also the use of Doxycycline and Mefloquine in the treatment of Chronic Babesiosis.
In an abstract for the scientific community, Dr. Richard Horowitz and Dr. Atkinson Barr were the first to present the use of Metronidazole in Chronic Lyme Disease.
Drs. Brorson and Brorson then published a paper "The Susceptibility of Mobile and Cystic Forms of Bb to Metronidazole" in APMIS 1999; 107:566-76, which helped to explain the persistence of Borrelia in vivo, by conversion to cystic forms. Abstracts by Dr. Horowitz can be found online at the ILADS website, www.ILADS.org.
Dr. Horowitz has devoted himself to help all patients through responsible medicine and compassionate service. He is especially dedicated to those patients suffering from chronic Lyme Disease, and related CO-infections. He is grateful for the opportunity to serve this community, and to be part of finding a cure for this debilitating illness.
The First Responder printed my story in their paper, also EMS Magazine...which did a wonderful job not only on my story but other comp issues as well, it was quite thorough........and below there is the second to none show which is coming up in a few days. The Second to None Show is going to be aired soon.
Second To None in Brooklyn -- programming list
All shows are on BCAT television, channels 34 & 67 at
9:30 a.m. and 5:30 p.m.
Thursday, March 22
Author Matt Forte talks about his new book. Then meet
Denise Chapman, former EMT with the NYC EMS/FDNY, who
talks about her experience with Lyme Disease and the
Bureaucracy. You'll be shocked by her story. (ch. 34
and 67)
Remember, Second To None can be found on BCAT
television, in Brooklyn, NY, on Time Warner channel 34
and Cablevision channel 67 every Thursday at 9:30 a.m.
and again at 5:30 p.m.
Tune in.
Reminder from joebur@jersey.net
Dr Lionetti will be our guest on Wednesday, March 28th at 8 pm EST.
Please join us that evening at http://www.lymediseaseaudio.com
The information provided in this newsletter, accompanying articles, and links to other related Web sites is provided as a courtesy to our readers, and all material is intended for information, communication, and education purposes only, and is in no manner an endorsement, recommendation or approval of anyone, any product, or treatments in issues of "Lyme Matters." The information presented is not to be considered complete, nor does it contain all medical information that may be relevant, and therefore, is not intended as a substitute for seeking medical treatment and appropriate care. Please consult your doctor or medical advisor before making any treatment changes.
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