Lyme recurrence
Oskie207
high fever, and chills. Treatment was 2 weeks of doxycycline and no follow up.
Guess what? My neck hurts, I am stiff and have joint pain at times, but mostly
I am TIRED! Had cold last week and a rash appeared on ankle on right foot.
Have doctors appt. on 17, May. I am apprehensive. Thanks for listening.
Oskie207(Carolyn)
Anthony Peranio
I had almost the same experience in 1989 and 1990.
When I showed my second internist, and the skin specialist he recommended, what
I now know I was an obvious Lyme reaction, the internist said that at my age (66),
and with my symptoms, and x-ray records, and non-specific results of a simple Lyme
test, he could only conclude this was mild arthritis. He prescribed Tylenol and
Indomethacin. The latter made me feel worse.
The skin doctor -in his great wisdom- said, "You apparently have an intense,
allergic, skin reaction (to the fiery looking outbreaks over my body) brought on by
exposure to 'some' toxin." He prescribed an ointment with corticosteroids in it
which really made my outbreak flip, and advised me to be the "detective" to find
out just what allergen it was.
I dumped ALL medications, and in a short while I was my "normal" self or nearly
so.
Several years went by with minimal Lyme symptoms (but they definitely were
there!) and I managed to finish out my teaching career.
YOU MAY, IN FACT GO THROUGH A SIMILAR PERIOD YOURSELF, IF YOU LEAVE THE LYME
(WHICH WE'RE ASSUMING YOU HAVE) ALONE; TREATMENTLESS.
Now, after more than 10 years from the first bite (I might have been bitten
twice) and the bungling treatment of non-literate doctors, I am again at the point
where, at least for the time being, I have dumped all medications and have come to
an agreement with my Lyme symptoms. When they bother me I rest, and I try to live
as healthful a life as I can; no smoking and drinking, and a healthful diet.
I've kept a detailed daily DIARY of my symptoms and goings on in my life, and,
with several others in this group have come to the conclusion that Lyme sufferers
display flare-up of symptoms every 16 days or so; or twice that the perceived
32-day "monthly" flare-ups.
This knowledge has calmed my anxiety, and given me a tool for predicting
events. Try the diary; I strongly recommend it.
As to treatment; that's up to you and your doctor. If you're an experimenter,
you will try the antibiotics and their several courses of introducing them into
your body. If you find ANYTHING that works, please let us all know about it.
Good luck.
Oh yes! To answer another writer in our group: My opinion with PREDNISOLONE was
devastating! I claim it kept me in the hospital with starnge symptoms (2 years
ago). One year ago a course of it produced a continuous arrhythmia the likes of
which I have never had. It started immediately with this steroid, and ended almost
immediately when I stopped.
Lyme sufferers, we must all beware, evidently. Providence must keep us away
from experimenting, non-literate Lyme doctors.
Anthony Peranio
devastating! I claim it kept me in the hospital with strange cardiac symptoms (2
Sinaj101
>
>high fever, and chills. Treatment was 2 weeks of doxycycline and no follow
>up.
>Guess what? My neck hurts, I am stiff and have joint pain at times, but
>mostly
>I am TIRED! Had cold last week and a rash appeared on ankle on right foot.
>Have doctors appt. on 17, May. I am apprehensive. Thanks for listening.
>
> Oskie207(Carolyn)
>
>
>
This was my experience also in the summer of 1990. I had the two weeks of Doxy
and then slowly I started getting the symptoms of lyme but was unaware of what
was going on until I got to the point I could barely walk. Then a neurologist
tried to tell me I had either MS, Lupus, or Fibromyalgia. Luck for me my
husband read hunting magazines and they had run a lot of articles about lyme
going dormant and coming back and he suggested that could be my problem. I
went and had a lyme test done locally and it was negative. I read the book
Coping With Lyme Disease by Denise Lang and after reading it I knew that it had
to Lyme. I called a lady that was mentioned in the book and she told me of the
nearest lyme literate doctor and I finally got diagnosed in Sept. of 97 and now
I am considered chronic lyme.
Janis in Oklahoma where some doctors don't think lyme exists.
Marc515
My son was infected years ago, and his doctor told him to test EVERY year. Good
thing, as he had 1 flair up a couple of years later.
Marc
H. Smith
Bad thing, as he had an eight year- long flare up. What makes us so certain that
the disease isn't slowly progressing and the symptoms, with new ones, there all the
time- just not mentioned due to the innocence, trust, and courage of a child- whose
life long outcome is determined by the arrogant ignorance of a doctor? Isn't the
essence of abuse the wanton urge to control and dominate? Patients teach doctors
what to write in medical textbooks about a disease. Not the other way around.
Textbooks don't teach a doctor about a patient.They just record what patients have
suffered Textbooks don't pretend to teach unless they were written for Practice
Management.
And Practice Management isn't about learning about a disease-learning about a
disease is too messy for Practice Management, full of trial and error, pain and
admitting mistakes- it is about control and domination for a profit. Beware the
abuse of refusing to investigate tick borne diseases.
Art Doherty
***********************************************************************
as of 29 January 1999
Excellent health prior to mid-1990. Ran 26 mile marathon in 1986 at age
46. Ran 6 days a week, bowled 6 days a week, and weight lifted 4 days a
week prior to fall 1990.
---------------
Interesting details of my diagnosis:
After suffering with many seemingly unrelated health problems I finally
made an appointment with a doctor when my left jaw became so stiff I had
trouble eating breakfast. For three months in 1991 (June thru August),
my primary care doctor attempted to determine the cause of my illness.
After many tests and appointments he diagnosed me with polyathragias
and/or pseudoarthritis of unknown origin and scheduled me for an
appointment with an infectious disease expert.
In the meantime, I did some reading about these two diagnoses at the
local public library. In a common desktop encyclopedia, I came across a
very small paragraph stating that the same symptoms could be caused by
Lyme disease and that there was a blood test for it. The paragraph did
not mention that Lyme disease was caused by a tick bite.
I asked my primary care doctor to test me for Lyme disease and he said,
"That's a good idea!", drew blood, and sent it to a local laboratory. I
then proceeded upstairs to the hospital library and found a long article
about Lyme disease in a 1989 copy of the Lancet medical journal. After
reading the article I then knew that my health problems were caused by
Lyme disease. There it was! All my symptoms and the tick bite and
subsequent rash that I had experienced over nine months earlier but
ignored since I knew nothing about Lyme disease.
I immediately proceeded downstairs to my primary care physician and told
him that I was sure that the blood test would come back positive and
related to him the tick bite and rash. Knowing what I know now, I was
very lucky - the blood test came back positive (many infected with Lyme
disease do not get a positive test). Since the appointment with the
infectious disease physician was still in the future, I suggested that
maybe we should cancel it since my test was positive. My primary care
physician said no, keep that appointment and see what the doctor says.
So I did. Well, even though I had a tick bite, followed by the
"characteristic" rash (actually the rash, if it appears at all, presents
many different patterns), followed by numerous Lyme disease symptoms and
even with a positive Lyme disease blood test, the infectious disease
expert, after learning that I had not been out of the area for over 5
years, said, "Mr Doherty, you could not possibly have Lyme disease,
there is no Lyme disease in the area."
I have since found that statement to be untrue even at the time it was
made. Five cases of Lyme disease in 1989 and 7 cases in 1991 had been
reported in my county - the 1990 cases are inexplicably missing from the
California Department of Health Services report in my possession. The
doctor really did not actually know whether or not Lyme disease existed
in the area - he obviously never checked with county authorities who
have the responsibility to know.
[And, now you know the motivation behind the creation of my web site,
Lyme disease in the United States and Canada
http://www.geocities.com/HotSprings/Spa/6772/lyme.html ]
My primary care physician chose to disregard the infectious disease
expert's opinion and treated me for Lyme disease. The rest is history -
all symptoms disappeared with IV Rocephin antibiotic treatment.
Although I have relapsed twice since, with long-term oral antibiotics my
symptoms have again disappeared and I have almost fully recovered.
---------------
Back to history:
In Aug 91, following approximately 12 months of symptoms, I was
diagnosed with Lyme disease. I had had a tick bite in late 1990 and, one
to two months later, a rash which I ignored since I knew nothing about
Lyme disease and did not connect the tick bite with the rash and
fatigue. Later, I had two positive Lyme blood tests - titers 1:256 - in
July 91 and Feb 92. I was treated at the military hospital at Vandenberg
AFB, California.
First treatment: 30 days of oral doxycycline (100 mg, twice per day)
followed by 21 days IV Rocephin, 2gm/day, once a day. All symptoms
totally disappeared but reappeared (not due to new tick bite!) 3 months
after stopping antibiotics.
Second treatment: 21 days of IV Rocephin, 10 days - 2 gm/day, then 11
days - 4 gm/day (2gm twice daily), followed by 6 months of oral
doxycycline. Symptoms disappeared for approximately 15 months after
stopping antibiotics but reappeared in summer of 1994. And, this second
relapse was not due to reinfection by a different tick!
Symptoms for Art Doherty - 27 July 1994 - four years after tick bite
***********************************************************************
NOTE: I also experienced most of these symptoms in 1990/1991 when Lyme
disease was first diagnosed but symptoms disappeared after each
treatment.
- Mild throat irritation, lots of nose dripping especially in mornings,
periodic mild hoarseness.
- Increased arthritic type stiffness/pain left elbow, right sternum/
clavicle joint, shoulders, neck, back. Severe stiffness in left jaw
occurred in 1991.
- On and off "sweet" taste in mouth.
- Small bruises after light/medium exercise - weight lifting or running.
- Night sweats/chills.
- Increased frequency of urination. Normal average per day = 9, now 13.
Has gone as high as 25 to 30 per day in 1991.
- Probable increased immune system activity beginning on 24 Jun 94:
"Reaction" type feeling accompanied by constantly "itchy" muscles
in back, arms, legs, etc.
- Slight stomach upset/nausea.
- Occasional sleeplessness. Cannot get back to sleep because the
body is "fighting it" - i.e., tenseness, pounding of pulse, etc.
- Increased size and darkening of "liver" spots, face and arms.
- "Jaundiced"/"washed out" look especially in the mornings.
- Periodic (every 16 to 20 days), severe, long lasting headaches (36
hrs) with eye sensitivity to light.
- Lots of fatigue. Noontime naps required.
- Infrequent, mild, random, dizziness.
- "Tendon problems"-hands/fingers temporarily lock in unusual positions
- Odd smells
- Painful teeth and eyes
- Occasional severe back pain lasting for many days
- High blood pressure,normal=120/80,with untreated Lyme disease=160/90.
- White spots on fingernails, splitting nails at end of vertical ridges.
- Constant sense of sickness
Additional acute symptoms (as of 12 August 1994):
- Warm/cool alternating, localized sensations in left pectoral muscle
and left rib cage
- Lingering hot and cold sensation in chest after drinking hot and cold
liquids
- Longer/stronger headaches and more muscle stiffness if sugar is eaten.
- Mild neurological symptoms
- lots of dreams and nightmares
- reduced concentration
- mild, short term, memory loss
- Cool sensations from knees down - 6/7 August 1994
- Slurring of speech - 9 August 1994
- Tingling of left jaw and face, twitching of left eye - 12 August 1994
Third treatment with antibiotics beginning 12 August 1994:
Six weeks of IV Rocephin (2 weeks of 2 gm, twice a day, then 4 weeks of
2 gm once a day), followed by 9 months of oral doxycycline (400 mg per
day and biaxin 1000 mg per day).
All symptoms disappeared after one week of Rocephin and no symptoms
reappeared while taking Rocephin. However, many symptoms came back
within 5 days of stopping Rocephin even though I was taking Biaxin and
Suprax. Switched antibiotics to Biaxin (1000mg) and doxycycline(400mg)
and most symptoms disappeared again.
Temperature low (approximately one degree or more) for approximately 3
months (Sept thru Dec, 1994). Experienced other symptoms, periodically,
until May 1995 when major symptoms reappeared even though I was still
taking the doxycycline and the Biaxin. Those symptoms as of 19 June 95
were:
Sweet taste
Fatique
Lots of activity ("crawly/itchy" sensation) in left side muscles.
"Crunchy"/itchy muscles in back and shoulders
Drippy nose in mornings
Itchy throat/hoarseness
Lots of arthritis/tendonitis in left arm
- Muscle/tendon irritation from left elbow to left shoulder
Bruising after very mild weight lifting
On/off cooling sensation in legs
Night sweats
Severe pain in entire left arm
On 19 June 95 asked doctor for prescription change to oral amoxicillin.
He did not want to do it but I pleaded for amoxicillin. He continued
with the doxycycline (200mg per day) and gave me amoxicillin (1500mg per
day w/probenicid) but only for 30 days. Severe pain in left arm
disappeared after only two days of amoxicillin.
On 10 July 95 I found a Lyme disease literate doctor who has kept me on
amoxicillin (6000mg - that's 6.0 grams per day - 1.5 grams, four times
a day) and Biaxin (500mg, twice per day). He intends to continue the
amoxicillin and Biaxin for at least 12 months or until all symptoms
have disappeared for at least three months.
Update:
---------------
Long term amoxicillin has definitely helped as all symptoms have
disappeared. Presently, 29 January 1999, I feel good. I have learned
that I must limit my exercise, otherwise my progress is slowed.
Currently, I jog approximately 30 minutes every third day and do some
light weight lifting or yoga two or three times a week. I recently
stopped the Biaxin and find that I feel better and sleep better.
Currently, if I do not drink too much liquid in the evening, I can sleep
for 7 or 8 straight hours - for years with, or relapsing with, or
recovering from, Lyme disease, this was impossible. I continue taking
amoxicillin although since September 1997 I have been taking
only 3.0 grams of amoxicillin per day. My health continues to improve.
See:
Lyme Disease in the United States and Canada
http://www.geocities.com/HotSprings/Spa/6772/lyme.html
Lyme disease resources
http://www.geocities.com/HotSprings/Spa/6772/resources.html
Art Doherty
4448 Libra Drive
Lompoc, CA 93436
mailto:doh...@utech.net
Art Doherty
************************************************************************
as of 27 March 1999
If you think you might have Lyme disease and are searching for a doctor,
call the Lyme Disease Foundation at 860-525-2000 to obtain the name of a
Lyme disease knowledgeable doctor in your area. They may ask for a
small processing fee but it is well worth it.
As you may know, there are many Lyme disease tests and it is not unusual
that persons infected with Lyme disease bacteria show negative when the
blood is tested. If you have a history consistent with Lyme disease -
i.e., tick bite, rash, symptoms, etc., - my advice (I'm not a doctor - I
am a knowledgeable Lyme disease patient of a knowledgeable Lyme disease
doctor) is to not accept any of the following diagnoses without first
trying antibiotic treatments:
- Multiple Sclerosis (MS)
- Fibromyalgia (FMS)
- Chronic Fatique Syndrome or CFIDS
- Arthritis
- juvenile rheumatoid arthritis (JRA)
- Arthralgias
- Menieres Syndrome
- Alzheimer's disease
- Lupus
- ALS (Lou Gehrig's disease)
- Myasthenia Gravis
- TMJ (temporomandibular joint [disorder])
- Guillain-Barre syndrome (GBS)
- CDIP (chronic inflammatory demylenating polyneuropathy)
- Scleroderma
- Sjogrens Syndrome
- Tinnitus
- Crohn's disease
- Gulf War Syndrome (GWS)
- MCS (multiple chemical sensitivity)
- Attention Deficit Disorder (ADD)
- Tourette syndrome
- Insanity
- Reiter's syndrome
- retinal vasculitis, or Eales disease
- Cogan's syndrome
- Horner's syndrome
- Bannwarth's syndrome.
- Etc.
I no longer test positive for Lyme disease but still have an active
infection that must be treated with antibiotics. If you think you may
have had Lyme disease for some time, based on my personal experience,
I would recommend the following initial treatment:
- Rocephin (Ceftriaxone), Intravenous (I.V.), 2 grams once a day for 3
to 6 weeks immediately followed by:
- Oral antibiotics - amoxicillin, 4 to 6 grams per day, divided into
dosages taken 4 times a day - for at least 6 months and preferrably for
one year or until symptoms have disappeared for three months.
- Supplement with BACID (acidophilus lactobacillin, etc.) to
replenish the good bugs in the intestines.
If, after treatment, symptoms start to reappear, antibiotic treatment
must be started again. This may seem extreme but the Lyme disease
bacteria are very difficult to kill. Many doctors do not know enough
about the disease to adequately diagnose or treat patients. You must
persist in finding a doctor who will treat Lyme disease aggressively
and for long duration if that is required. Some, probably including
myself, will require antibiotics for the rest of their lives, but that
is preferrable to suffering with Lyme disease.
If you do begin taking antibiotics, you may experience a worsening of
symptoms, especially headaches. This is called the Jarisch-Herxheimer
(J-H) reaction and is believed to be due to antibiotics killing off lots
of bacteria at once which releases toxins. My J-H came 3 days after my
first Rocephin treatment but others say it can come as late as 3 to 4
weeks after starting treatments and may occur periodically during
treatment.
One thing that I and others with this disease have learned is to eat no
sugar - no honey, no ice cream, no fruit juice, no cookies, no desserts,
no sweets at all! I know this is difficult but you will feel a lot
better.
Other sources for information on Lyme disease on the internet are:
Lyme disease resources
http://www.geocities.com/HotSprings/Spa/6772/resources.html
Lyme Disease in the United States and Canada
http://www.geocities.com/HotSprings/Spa/6772/lyme.html
Lyme Disease - Conn's Current Therapy - 1997 (7 pages)
Method of Joseph J. Burrascano, Jr., M.D.
http://www.geocities.com/HotSprings/Spa/6772/conns.txt
THE NEW LYME DISEASE
Diagnostics Hints and Treatment Guidelines for Tick Borne Illnesses
by Joseph J. Burrascano, Jr., M.D. - 12th Edition, 1998 -
(complete - 23 pages)
http://www.geocities.com/HotSprings/Spa/6772/burrascano-12th.txt
or
http://guidelines.LymeNet.org/ (complete)
or
http://www.lyme.org/otherdis/burrascano.html (individual section links)
MANAGING LYME DISEASE
http://listserv.lehigh.edu/lists/lymenet-l/managing.htm
Diagnostic Hints and Treatment Guidelines for Lyme Borreliosis
by Joseph J. Burrascano, Jr., M.D. - 11th Edition, 1996 - (21 pages)
Lyme Disease Information Resource (LDIR)
http://x-l.net/Lyme/
The Lyme Disease Network
http://www.lymenet.org/
Lyme Disease Foundation (LDF)
http://www.lyme.org/
The LDF may be contacted for a doctor referral in your area.
mailto:lym...@aol.com Hartford, CT
Lyme Alliance
http://www.lymealliance.org/
Ask NOAH About: Lyme Disease
http://www.noah.cuny.edu/lyme/lyme.html
Cheryl Orlowski's Lyme disease web page
http://www.aero-vision.com/~cheryl/lymes.html
Symptoms of Lyme disease
http://www.geocities.com/HotSprings/Spa/6772/symptoms.txt
Nine reasons for false negative Lyme disease test results
http://www.geocities.com/HotSprings/Spa/6772/false-negative.txt
Lyme disease and false negative or false positive blood test results
http://www.geocities.com/HotSprings/Spa/6772/false-neg-pos-index.html
Lyme Disease Misdiagnosed As ...
http://www.geocities.com/HotSprings/Spa/6772/lyme-misdiagnosed-as.html
Lyme Disease Risk Assessments - done by the U.S. Army
http://www.utech.net/users/10766/lyme.htm
Lyme disease human vaccine information on the internet
http://www.geocities.com/HotSprings/Spa/6772/vaccine.html
Is Lyme Disease Underdiagnosed, Overdiagnosed, and/or Underreported?
http://www.geocities.com:80/HotSprings/Spa/6772/under-over-diagnosed.html
-----
And, of course, the news:sci.med.diseases.lyme newsgroup is an excellent
source for information and support.
I know a lot about this disease and have talked to doctors and patients
from around the world. I have more information if you need it. If
you have Lyme disease I know what you are experiencing. Please do not
hesitate to contact me if you have any questions.
Sincerely,
Art Doherty
4448 Libra Drive
Lompoc, CA 93436
mailto:doh...@utech.net
Nine reasons for false negative Lyme disease blood tests
************************************************************************
as of 24 August 1998
The Lyme Disease Foundation (LDF), in their brochure entitled "LDF
Frequently Asked Questions About Lyme Disease" lists the following
nine reasons for false negative Lyme disease tests results:
[brackets contain my words]
a. Antibodies against Bb are present, but the laboratory is unable to
detect them. [Borrelia burgdorferi (Bb) is the Lyme disease bacteria.]
b. Antibodies against Bb may not be present in detectable levels in
patients with Lyme disease. Reasons are listed below.
1. The patient is currently on, or has recently taken, antibiotics.
The antibacterial effect of antibiotics can reduce the body's production
of antibodies.
2. The patient is currently on or has previously taken
anti-inflammatory steroidal drugs (such as those taken to treat
rheumatoid arthritis) or certain anticancer drugs. These can suppress a
person's immune system, thus reducing or preventing an antibody
response.
3. The patient's antibodies may be bound with the bacteria with not
enough free antibodies available for testing. [I think this reason is
very important and prevalent. For this reason, some of the worst cases
of Lyme disease test negative - too much bacteria for the immune system
to handle.]
4. The patient could be immunosuppressed for a number of other
reasons and the immune system is not reacting to the bacterium.
5. The bacterium has changed its makeup (antigenic shift) limiting
recognition by the patient's immune system.
6. The patient's immune response has not been stimulated to produce
antibodies, i.e., the blood test is taken too soon after the tick-bite
(2-6 weeks). Please do not interpret this statement as implying that
you should wait for a positive test to begin treatment.
7. The laboratory has raised its cutoff so high that a patient's
previously positive test is now borderline or negative.
8. The patient is reacting to the Lyme bacterium, but is not
producing the "right" bands to be considered positive.
-----
Lyme Disease Foundation
1 Financial Plaza
Hartford, CT 06103
(860)525-2000
fax (860)525-TICK
Lyme Disease National Hotline (800)886-LYME
email: mailto:lym...@aol.com
web page: http://www.lyme.org/index2.html
Lyme disease and fingernails as of 23 July 1998
************************************************************************
On the subject of fingernails and Lyme disease, I have experienced the
following when I initially had untreated Lyme disease for about nine
months:
1. Nail splitting or cracking at the tip of nail where the vertical
ridges (ridges in nail, parallel to the finger) exit at nail tip.
2. White spots in the nail on most nails.
3. Uneven growth/horizontal ridges (ridges perpendicular with finger).
All these symptoms, except the white spots, disappeared upon taking
antibiotics. The white spots would lessen but they never completely
disappeared. However, after stopping antibiotics, these symptoms
reappeared along with all of the other Lyme disease symptoms. Many
times I could roughly predict when the white spots might appear at the
base of the nails. They appeared two to four days after a major flare
of symptoms when I was not taking antibiotics and was relapsing.
After doing a little searching and reading, I have found that the white
spots are called leukonychia and are due to zinc deficiency. Zinc also
affects the immune system - too little or too much can have an adverse
effect on the immune system.
I take a extra zinc (30mg, four times a day - RDA is 15mg) plus the 15mg
contained in a Centrum multiple vitamin and the white spots are gone.
There is a paper on nutrition that discusses zinc and its relationship
to the white spots and the immune system at:
http://www.nutramed.com/nutrition/iron_zinc.htm
If only these fingernail symptoms were the worst of the Lyme disease
symptoms! But, all this indicates to me that those who state that some
fingernail abnormalities are due to disease/infection are correct.
Art Doherty
mailto:doh...@utech.net
Doxycyline, amoxicillin (tetracycline and penicillin) and Lyme disease.
************************************************************************
26 May 1997
Knowing that different antibiotics may work differently for different
people at different dosages for different courses at different times for
different strains of Bb, I make the following observations about the
antibiotics doxycycline and amoxicillin and my battle with Lyme disease.
Background
**************************************
No doubt of my Lyme disease diagnosis - tick bite, rash - reddish
circles with slightly raised edges and lighter centers, many classic
Lyme disease symptoms, and, nine months later with no antibiotic
treatment, a positive Lyme disease titer.
After approximately four years of ups and downs with short term (3 to 6
weeks) IV Rocephin (ceftriaxone) and ineffective oral treatments, my
local doctor agreed to one more 6 week IV Rocephin treatment followed by
long term (one year or more) of treatment with the combination of
doxycycline and Biaxin (clarithromycin). After approximately 9 months
of this combination treatment, during which time all the Lyme disease
symptoms did not disappear as they had during previous treatments, the
major symptoms reappeared. I then, in the summer of 1995, had to find
my current Lyme literate doctor.
My Lyme literate doctor and I decided to switch to the combination of
Biaxin and amoxicillin. This has made an enormous difference. After
being on this combination for over 2 years, almost all symptoms have
disappeared and my health continues to improve, even though I just
recently stopped taking the Biaxin. Why did amoxicillin work for me and
doxycycline did not?
My guess
**************************************
I hypothesize that, because I went so long before receiving my initial
treatment (9 months) and/or because I required large dosages of IV and
oral antibiotics, my immune system may have been compromised.
In the abstract that I have of Dr Burrascano's presentation at the 1995
Eighth Annual International Scientific Conference on Lyme Borreliosis
and Tick-Borne Disease held in Vancouver, British Columbia, entitled
"Management of Chronic Lyme Disease", Dr Burrascano states that "My
studies have shown that many patients with resistant infections have
deficiencies in B, T, and/or killer cell function."
Doxycycline prevents the bacteria from reproducing but does not directly
kill the bacteria - it weakens them and they die or are killed by the
immune system. This is what is referred to as bacteriostatic action and
is dependent on a well functioning immune system. But if the immune
system has been adversely affected by the disease or antibiotics, then
it might not be able to cope with the bacteria.
On the other hand, amoxicillin, a penicillin, is bactericidal meaning
that it directly kills the bacteria, and does so while they are dividing
(replicating). This may be the reason that amoxicillin has worked so
well for me - it does not depend on a fully functioning immune system.
Other issues
**************************************
1. Does amoxicillin penetrate the brain barrier? The Physicians Desk
Reference (PDR) and the little flyer that is included in the antibiotic
container (very often removed by the pharmacist) states the following:
"It [amoxicillin] diffuses readily into most body tissues and fluids,
with the exception of brain and spinal fluid, except when meninges are
inflamed." However, Tom Grier, in his notes of Dr Burrascano's
presentation at the same 1995 conference cited above, writes "He [Dr
Burrascano] emphasized that Neuro Syphilis is treated with 6000 mg
Amoxicillin plus probenicid daily!". To me, this means that at high
enough concentrations, amoxicillin does in fact penetrate the brain
barrier.
It very well could be that the third Rocephin treatment that I had just
before going onto very long term oral antibiotics cleared up all of my
neurological symptoms and the orals have taken care of any bacteria that
was able to "hide out" in deep tissues such as tendon/bone interfaces,
etc. In any event, since being on amoxicillin (6000 mg per day) I have
had no return of symptoms, including neurological symptoms.
2. Can one benefit by taking doxycycline and amoxicillin at same time?
The PDR and drug flyers also state for doxycycline, under "Drug
Interactions", "Since bacteriostatic drugs may interfere with the
bactericidal action of penicillin, it is advisable to avoid giving
tetracyclines [like doxycycline] in conjunction with penicillin [like
amoxicillin]."
The way I read this is that, it's not so much that the chemicals
counteract or cancel each other, it's that if doxycycline has prevented
the bacteria from replicating, then the amoxicillin will have no effect
since it depends on the bacteria replicating. However, I have my doubts
that all of the bacteria are affected at the same time by doxycycline
and that amoxicillin may kill some bacteria at the same time that
doxycycline is having its affect. And besides, my motto is, if it works
for you, use it!
Art Doherty
mailto:doh...@utech.net
Lyme disease treatment regimen for Art Doherty
************************************************************************
as of 07 June 1997
1. I take 500 mg of Biaxin, twice a day, one with breakfast and one
during my evening meal. I take 1500 mg of amoxicillin (three 500 mg
capsules), four times a day - with each meal and once in the middle of
the night with lots of water.
2. I do not take probenicid - I rely on the high and frequent dosages
to keep the blood levels up. Early on I tried probenicid and did not
handle it very well - felt very groggy in the mornings.
I, too, had minor stomach upset when starting Biaxin. It took awhile
but I gradually got used to it.
I always did well on the IV Rocephin but the effects never lasted - the
Lyme disease has always relapsed after the IV treatments although I
still recommend them for serious neurological symptoms but followed
immediately with orals, specifically amoxicillin.
Here's my complete, original regimen (Sept 1995 - Sept 1997):
breakfast:
500 mg Biaxin
1500 mg amoxicillin
400 mg Zovirax (for EBV)
30mg zinc
one-half stress tab (vitamin B complex)
one-half multi-vitamin (Centrum silver)
500 mg vitamin C
one soft gel of cod liver oil
lunch:
1500 mg amoxicillin
one-half stress tab
30 mg zinc
500 mg soft gel capsule of primrose oil
500 mg vitamin C
one to two hours before supper:
one yougurt and two capsules of freeze dried acidophilus
lactobacillin
supper:
500 mg Biaxin
1500 mg amoxicillin
400 mg Zovirax (for EBV)
30mg zinc
one-half stress tab (vitamin B complex)
one-half multi-vitamin (Centrum silver)
500 mg vitamin C
one 500 mg soft gel capsule of garlic oil
midnight (taken with lots of water):
1500 mg amoxicillin
500 mg vitamin C
30 mg zinc
Limited sweets - none at suppertime.
[As of September 1997, I have reduced the amoxicillin to 1500mg, twice
per day; I no longer take Biaxin; and I have cut back the supplemental
zinc by 50% - 15mg four times per day.]
---------------
Prepared by
Art Doherty
Lompoc, California
doh...@utech.net
Bruce and/or Emily Fletcher
Thanks for the post on your case history. I find your current course of
treatment and condition encouraging.
Bruce
Keith Starkman
You provide us all wih an amazing wealth of information. I wish my Lyme
Illiterate Dr. would have read some of the info you have posted. Maybe
then she would have treated me. Through your efforts and the efforts of
many others in this wonderful group, I have now found a LLMD that wil
treat me.
Thanks, Joan
John Wilson
Keith Starkman
Hi Art,
Thanks, Joan
Has anyone else noted the rather weird nature of the analogy of horses
and zebras sometimes advanced to justify not acknowledging lyme? The
point is, when you see hoofprints, you just look for whatever made them, if
you aren't incredibly stupid or incredibly arrogant. When you see an
animal with stripes, and the general conformation of a stocky horse, maybe
it's a zebra. You don't need any theory to tell you what it is.
I realize lyme symptoms are the same as other ailments, but doctors'
dragging their feet on testing seems inexcusable.
Regards
John