Home -- Symptoms -- Cycles -- What we did
CONTENTS
I. What we did
II. I do not know physicians treating Lyme
III. Purchase of Antibiotics
IV. Discussion groups
V. References
I. What we did
With the generous help of many medical professionals [3],
I did research on the immune response under the effect of Lyme for Marianne,
my wife. You can see in my draft paper [2] what we did
in detail and our tentative rationale behind it. Principally, here is what we did:
-
After the usual tests to exclude other illnesses [4] and
subsequently
-
4 weeks of ceftriaxone (Rocephin) plus 4 weeks doxycycline [5]
-
Ken Liegner [24] diagnosed Marianne as having Lyme, perhaps
in a dormant form already since her childhood.
-
When we said
-
we wouldn't find a German physician willing to inject iv Rocephin for another
and this time extended period of time, and
-
Marianne would not want to inject the abx into her veins by herself, he
suggested she take oral cefuroxime (Ceftin).
-
When this treatment did not prevent her from becoming rapidly more ill
, we discussed further use of Rocephin. Marianne was now ready to inject
it herself.
-
Marianne and I decided that
-
the physicians alone cannot do the job (see III.1,
III.2)
- they need considerable help from the sufferer's side. So
-
we would have to understand the illness ourselves as well as -and some
details may be even better than- the specialized physicians and
-
we need to act on our own,
-
i.e. asking only for specific services as necessary, e.g.lab tests determining
the concentrations of the antibiotic in her blood. With this info we made
sure we could make an informed estimate (on the basis of my pharmacokinetic
models [6]) that the antibiotic concentration in the cerebrospinal
fluid (csf) was above the minimum inhibitory concentration (MIC) for B.
burgdorferi (Bb).
-
Ken told us he would in "phone consultations" discuss with us any questions
we had.
-
We found a physician in Germany who agreed to do the necessary blood tests
and ultra sound checks (for gall bladder etc. sludging).
-
I started to establish the necessary scientific contacts reading the necessary
literature [7]. Without Medline [8] I
would have not succeded. This huge gift of the American people to the world
has had a profound effect on Marianne's and my life.
-
After having transformed JJ Burrascano's method of tailoring the duration
of the antibiotic therapy to the sufferer's immune response [9,
10]
I felt able to interpret Marianne's symptomlog [11],
which she kept on a daily basis [12].
-
After disussions in the research department of Bristol Myers Squibb (manufacturer
of cefepime, a 4th generation cephalosporin) in Princeton, NJ, Marianne
and I decided to switch from ceftriaxone to cefepime, assuming that this
would get her past the stationary -but not yet satisfactory- level of her
Lyme. Due to its molecular structure, cefepime might penetrate into compartments
of her body that have not been reached by ceftriaxone at that time. We
started to think in terms of possible niches into which Bb might retreat
under antibiotic treatment [13].
-
Patricia Coyle of the Neurology Departement of SUNY (State University of
New York) helped me considerably when she suggested I might look for Marianne's
menstrual cycle within the symptomlog, since my statistical analysis enabled
me to distinguish cycles of various lengths in her symptomlog [14,
15].
-
Marianne and I decided that the switch of the cycle length to the length
of her mentrual cycle (23 days) might be a valid message from her immune
system: the level of Bb antigen in the compartments visible to the immune
system might now be low enough to let the immune system do the rest of
the elimination alone, unaided by antibiotics.
-
Marianne stopped iv cefepime and finished the treatment with doxycycline,
thus following exactly JJ Burrascano's recommendations.
Apart from a vaguely suspected, certainly stress correlated, relapse half
a year after the end of the doxycycline therapy -and precautionary ceftriaxone
infusions for 10 days- Marianne has been without major symptoms ever since.
She does have occasional and stress related slight paraesthesias on the
back of her head (a very faint version of symptom 18 [12].
Summary
-
Physicians alone couldn't help us.
-
Solving problems with health insurance had to be postponed until after
recovery.
-
Results could be evaluated only after months of consistent carefully controlled
treatment.
-
In my draft paper you can see that treatment took a very
long time, and there were no short term (i.e. within weeks noticeable)
correlations between antibiotic intake and treatment outcome. Only after
I did an evaluation similar to a Fourier transform I believed I could see
a response of Marianne's immune system [14, 15].
The corresponding statistics needed at least a period of some two months
[12]. This is consistent with other studies [22,
23]
I saw the abstract of.
II. I do not know physicians treating Lyme
Marianne and I decided that
-
Lyme research is making such rapid progress that we
are not likely to find physicians who would be able to help Marianne without
us cooperating on a scientific basis.
-
when stepping into new medical territory, the treating
physician is risking too much to be free in his decisions. We would have
to take the entire responsibility for the therapy. We had to convince the
cooperating professionals that we are able to decide for ourselves
and that there would be no risk involved for her/him.
-
the problem of getting reimbursed by the health insurance was secondary.
After our visit to Ken Liegner, Marianne's insurance company stopped payment
and asked for clarification of several questions by Ken Liegner. Ken tried
to meet their requests writing two letters, without success though. From
then on we spent another approx. $ 20,000 on antibiotics (total treatment
costs were approx. $ 40,000, and as far as I recall more than 30,000 of
which were for medication). After Marianne had recovered, I entered into
a long mostly technical discussion (about medical details) with her insurance
company. The result was that the company approved Ken's diagnosis and our
treatment.
III. Purchase of Antibiotics
We bought cephalosporines in the US and Spain [21]
(prescribed by Ken Liegner and Don Brescia). The ones prescribed by the
physician cooperating in Germany we bought in Germany.
IV. Discussion groups
Do you know the various discussion groups on Lyme? Apart from the ones
I listed on our server [16, 17], I'm
mostly listening to the discussions in Kathleen Dickson's ActionLyme [18],
Robert Bransfield's Microbes and Mental Illnesses [19]
and Marie Kroun's LymeRICK [20]. To be admitted, you
have to e-mail an application, stating your interest in the group's discussions.
Marie wishes to limit the group strictly to medical professionals and their
collaborators. I think she hesitated to let me in.
V. References
[1] Lymenet.de: Über dieses Projekt
[2] Lyme Disease: Statistical Evaluation of a Symptom Log and an Empirical Theory of Flare Cycles
[8] PubMed/
[9] J.J. Burrascano: COURSE DURING THERAPY
[10] Burrascano's Guidelines and immune response modeling
Lyme Disease: Statistical Evaluation of a Symptom Log and an Empirical Theory of Flare Cycles
[16] Kontakte
[17] Links
[18] ActionLyme
[19] Robert Bransfield's e-mail address is rbransfield@monmouth.com
[20] LymeRICK
[21] Farmacia, Pedro Jose Gonzales - Les Barbosa,
Avenida Mateo Bosch 16,
ES - 07157 Port d'Andraitx,
Baleares, Tel./Fax +34 971 -67 20 19
[22] Models of immune systems: the use of differential equations
[23] Mathematical immune response models
[24] LYME DISEASE: THE SENSIBLE PURSUIT OF ANSWERS (in cache)
[25] A Tentative Interpretation of Lyme Flare Cycles and a Corresponding Therapy
version Oct. 3, 2008
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Jochen Gruber