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My Detailed Lyme Story
My story is a detailed story. I've been co-existing with Lyme disease for a long
time.
The years that led up to my diagnosis are quite detailed below. If you'd rather read a
cut and dry version of my Lyme history-- what I faxed to Dr. Sam Donta in the midst of my
frustrations post-initial treatment, click here
(sorry not available). Otherwise, you
may read the embellished version below.
Please be sure to read the update too. I'm not in the same place I was when
I wrote this below!
Life with Lyme: No Clear Beginning or Clear End in Sight...
I've come the farthest of all. I think I was infected during childhood as I often had
stiff necks and strep throat several times a year. My favorite activity was cleaning a
stream in the woods behind our yard in Shelton (CT).
I started to go downhill in the 1980s when I started having kids. I was exhausted and got
a systemic rash from ampicillin given to me for an ear infection during my first pregnancy
(1982). I was questioned, "Are you sure you are pregnant? People often get a rash
like this when they have mono and take antibiotics." Had it been ten years later, a
good doctor would have asked if it could be Lyme!
I developed bad allergies that I thought was the main cause of my fatigue (besides the
kids!) By the early 90's, I had 3 tick bites below the waist and in the groin area but no
flu-like illness followed. However, by 1991, my naturally thick hair had thinned
noticeably to family; I could run my fingers through my hair all day long and find them
full of hair. My teeth were sensitive to hot and cold, yet I had no dental problems. I had
had swollen glands the size of "dodo marbles" and aches coming and going in my
neck, shoulders, and back. I always sounded absolutely exhausted and out of breath
although I didn't have asthma. I also found I had mitral valve prolapse. It eventually
became so loud that my husband could hear my heart beating through the mattress at night.
Eventually I developed menstrual irregularities and had a miscarriage (both may be from
fibroids I'm now finding out) and cervical cell changes which reversed with cryosurgery.
Also, neurological symptoms such as constant tinnitus, non-stop headache and occasional
optical migraines typical of neurological Lyme (fall, 1992). And I was ALWAYS cold!
I sought treatment for candida and allergies and was able to get back some stamina, though
I now have to admit I didn't realize how bad off I was so this small improvement seemed
far greater than it was. Never was I questioned about possibly having Lyme disease.
In the meantime, a friend of mine was diagnosed with Lyme after she got the flu-like
illness and had a huge rash on her back side. The treatment made her very ill with anxiety
and suicidal thoughts. I started to think she may have had it a long time because she had
terrible back and neck problems for at least a year.
Finally I was desperate myself to overcome the fatigue and pulled out the Nordic
Trac™ in July, 1994 to begin conditioning myself to get back in shape, no matter how
tired I was. Earlier that mo. my mother told me my head was shaking just like my dad's (he
has Parkinson's and so does his mom. And now we know they both have had Lyme too!)
Anyway, after 2 days of getting back on the "Trac", I ached unbelievably! I'd
done more in the past and never felt this way. I noticed a slight elongated rash on my
lower left thigh above the knee. I wouldn't have noticed it but it had a slight itch. By
the end of the week, numerous patches were waxing and waning all over me. But worse, my
bones began to ache incredulously as though I were soaking in a barrel of ice water. I had
an unbelievable headache, but that was nothing new, especially in July/Aug. humidity.
I strongly suspected I had Lyme disease, but despite the fact I'm a nurse, it wasn't until
several weeks later I concluded that I must have had it a very long time. I sought
treatment immediately, tested strongly positive (too strongly to be an early diagnosis but
my MD was too ignorant to realize it!) Then two weeks after the treatment was over, I
developed a swollen knee and lots of cognitive symptoms. I was put back on orals
(amoxicillin sometimes, doxycycline other times) but kept backsliding. Finally in Nov. I
was granted 3 weeks rocephin IV. My headaches and low grade fever were just beginning to
diminish after all that. I begged for more and was only given 1 more week. At the end of
the last week I was pronounced cured, despite countless symptoms I haven't even recorded
here. (Largely cognitive, but also physical). I tried to work with her, having her consult
Dr. Sam Donta, but her heart just wasn't with it. She was practicing cookbook medicine and
I knew I had to find a better doctor. This same doctor couldn't even diagnose my friend's
suicide threats when they were point blank. (I had to bring her to another doctor to get
her into a mental hospital at the same time I my illness was peaking.) I was clearly
relapsing every 4 weeks with my cycle, despite taking doxycycline faithfully.
My new doctor followed Dr. Joseph Burrascano's protocol of switching antibiotics every so
many weeks. I made such terrific progress over the next several months. I had some very
terrible herxes most notably while on doxycycline that never occurred in earlier
treatment. My right shoulder was in bad shape, and I finally chose to have physical
therapy to restore it (1997). By Oct. 1996, 26 mo. after initial diagnosis, I finally
plateaued in healing. My relapses were vague, mild, and not occurring more than every 7
weeks, and I was willing to stop antibiotics on a trial basis despite some tolerable,
persistent symptoms. (Two earlier attempts had failed.) This decision came after months of
prayer and research for non-prescription treatment of Lyme disease, one treatment in
particular. I really wanted to break away from being dependent on a doctor and antibiotics
to treat Lyme.
I would have been very concerned about failure & relapse again, but this time I had
something else to try out that didn't require a prescription. My doctor had "off the
record" told me about colloidal silver. He couldn't recommend it but had received
good reports about it from other patients of his. So I decided to give that a try,
investing in some Futurebiotics CS (5 ppm). I tried it for a couple weeks, and the aches
in my hands and feet, and the tinnitus (which I thought were permanent) went away. I
started making my own with a home made generator that costs about $30 to make.
I had a bad relapse in Feb. during a cold spell. My bones ached badly for a few days. But
after that, I was nearly completely assymptomatic while taking the CS. I eventually started
skipping the CS for weeks at a time, up to 3 months abstention. If a relapse came back
(any triad of physical & neurological symptoms) I would resume the CS for a minimum of
5 days for up to 2 months. The CS has kept me going ever since fall, 1996. I also noticed
I could keep colds from turning into sinus infections which I used to get at least 3 or 4
times a year. The only antibiotics I've taken since then have been for dental work,
required due to my MVP. Incidentally, the MVP symptoms are a rare occurrence now; they
usually peak during allergy season or times of high level of stress or exertion. Now I get
a better quality (longer shelf life) CS from a friend who invested in an expensive
commercial CS generator for her personal use. Although I seldom use it, I keep it on hand.
I also have not ever used it regularly with my children because there is not enough documented
scientific evidence of it's safety. So I don't recommend CS in that sense. What I
recommend is that people research as best they can so they can make an informed decision
whether or not to try CS themselves. Based on the scientific studies I've found, it is not
CS but over use of prescription silver salts and accidental industrial exposure to
elemental silver (which are of a much larger particle size and concentration than CS) that
are not safe to take long term or in high doses. The CS is a far less amt. due to it's
smaller size and concentration, so it stands to reason that the risk is far less. I am
unable to find any case of silver poisoning (argyria) due to colloidal silver to date.
However, one former user of prescription silver medication, "the blue lady" is
known to "bash" CS, surmising that what she took (that turned her blue after
years of use) is the same stuff as CS. It is not, but you really have to study about CS
and her case to be assured for yourself. Also, two cases
where individuals made their own CS using either salt or tap water resulted in
argyria after long term use due to their consumption of silver salts. I have not
ever heard of a case of argyria when CS is properly made with pure distilled
water, pure silver (not sterling which also has nickel in it) and not with other
mineral or protein additives.
Since I began the CS, I found I had far more energy than I ever remember having, and this
has restored my inner creative nature. Extended family really noticed this at Christmas,
1996, when I was energetic and excited about living once again. (On a private note, my
husband also appreciated my substantially improved libido.)
So what symptoms do I have now? Once in a while, a bone will ache or my hip or shoulder
may feel weak. Or once in a great while (not more than once in 4-6 months now) I get
tinnitus, headache, fatigue and bone aches or some other symptom such as cognitive -
difficulty spelling or typing. I take the CS and within a couple days, I feel like I'm
back on course.
My big problem (aside from not enough hours in the day to do all I want to do!) now are a
couple problems secondary to Lyme and menstrual problems. I need to lose about 35 lbs. I'm
hoping this fall to do something about the fibroids so my menstrual cycles won't dictate
my level of activity any longer.
No longer is Lyme calling the shots in my life. I sincerely and humbly thank my God for
bringing me through battle after battle, mental, physical, spiritual and with the medical
community. And for leading my path to colloidal silver, which in my case has not cured me
but has restored to me the independence and life I was longing for.
*******Take a look at my
update!*******
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My Detailed Lyme Story
