MediTest
27 Apr 2018
Author
denise
Title

How to Access CFS Success Stories?

Body

I'm sure I've asked this before -- but -- where/how can I locate success stories by peope who have cfs???

Comments

Click on Patient Stories at the top of the page, then you can move on to their blogs for more up to date info........Sarah

An Itinerary in Light and Shadow   Stratton/Wheldon regime since August 2003, for aggressive secondary progressive MS.  Intermittent therapy after one year. 2007 still take this two weeks every three months. Still slowly improving with no exacerbation since starting. EDSS was 7, now 2

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Sarah -- I have gone over the list of patient stories before -- there are about 16 of them.  Almost half of these stories (7) are from MS sufferers.  Of the remaining stories, only one or two are about cfs the rest are on other conditions. 

Just wanted to see how people with my condition were succeeding or not. 

Thanks anyway.

denise

 

63 year old woman who feels like 100!  CFS since 1998.  Main problem -- severe fatigue with "going into shock" feeling very often.  Tested positive for CPN 3/07.  Severe reaction to azithro (begun slowly in 5/07) - had to stop.  No abx yet --

63 year old woman feels like 80!  CFS since 1998.  Severe fatigue and awful reverse sleep main symptoms.  No Fibro.  Tested positive for CPN 3/07.  Severe reaction to azithro (begun slowly in 5/07) - stopped. 

Hi Denise,  I don't know why Elinor's story is not in "Patient Stories," but it's a very good one

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, antivirals, heavy metals chelation, LDN, Metanx, Lunesta, GF/CF diet, Lauricidin, oral IgG/lactoferrin/IGF-1 booster, astaxanthin, gamma oryzanol.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

Additional report of CFS treatment is in the case reports of the patent materials. Look up patent 6,838,552 by googling and look for the case reports.

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 300mg INH, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Tini daily (Taking a break from continuous protocol)

Jim,

Hi.  Alas, I could not find case reports when I googled patent 6, 838,552 and accessed patent storm and some other sites.  All there seemed to be were the abstract, the full text, etc. -- those only had a description of the "invention", tables, etc.  Could not find any reference to people's responses.  Thanks anyway.

 

63 year old woman who feels like 100!  CFS since 1998.  Main problem -- severe fatigue with "going into shock" feeling very often.  Tested positive for CPN 3/07.  Severe reaction to azithro (begun slowly in 5/07) - had to stop.  No abx yet --

63 year old woman feels like 80!  CFS since 1998.  Severe fatigue and awful reverse sleep main symptoms.  No Fibro.  Tested positive for CPN 3/07.  Severe reaction to azithro (begun slowly in 5/07) - stopped. 

CFS Success Story: After 15 years of severe CFS (bedridden, on oxygen, methadone, slow speech, unable to read or follow TV shows, etc.) I was hospitalized for serious septicemia. I had had a port installed in my chest so that my husband could give me twice weekly infusions of lidocaine for my pain. The port had been in for over 6 years and had to come out. They think that is what triggered the septicemia. For 6 agonizing weeks I was given two powerful IV antibiotics. The first two weeks I was in critical care, hooked up to monitors and lots of machines. They said that had they not caught it when they did I would have died within a week or two. I could not eat at all and suffered severe trembling and diarrhea. They had to stop all my meds cold turkey so I suffered severe withdrawal symptoms as well. I lost 70 pounds. But slowly I started to improve. I had physical therapy and began to walk a little. At the end of 6 weeks I was able to walk out of the hospital! For some reason it seemed that the CFS was markedly improved for the first time in many years. Now we think it was the antibiotics. I have been going downhill this past year and it seems I need antibiotics again. I reacted severely to doxycycline so my doc plans to try something else. But there is hope for CFS!Image removed. 

 I have noticed about a 40% improvement with my CFS and adrenal fatigue since starting protocol about 7 weeks ago.  I have not had a 'couch day' in about 3 weeks.  I'm even lowering my dose of cortef. cortef was for low cortisol. cortisol is produced by adrenal glands. my adrenal glands were shot due to CPN and inflammatory process from the CPN.  I'm tired throughout the day, but can push through it. I dont have the fatigue anymore.  I have become less reclusive also.

Memphis, TN. adrenal fatigue and CFS.  6/26/07- CPN Titer 1:256 (normal 1:16); 6/27/07-started NAC; 7/2/07-started doxycycline 100 mg twice daily; 7/19/07 started Biaxin 250mg per day.

Mphs, TN. CFS, hypoT (Hashi), adrenal fatigue, hormonal inbalance. right arm neuropathy-getting better. cpn, myco, EBV, CMV, HHV-6. Cap began in 6/07. NAC 2400mg, mino 100mg bid, biaxin 500mg bid. cytomel, flagyl bid continuously.

Dear Sharon,

I'm so glad to hear of your improvement!  That is fabulous.  I have a question -- you said that you are tired throughout the day but don't have fatigue anymore, not sure I understand.  Are you working?  I long to be able to do that again.

And supplements -- are you taking any?  If you have the time and energy to respond -- which ones and how much.  I know I'm like Sherlock Holmes, sorry.

Fatigue is my main issue.  I attempted the abx awhile ago and began with azithro, but had to stop as the side effects or whatever were just beyond tolerating (and I was very slowly doing the azithro).  When I get a blood test this week, I'll then return to my MD and we can discuss what to do next -- ?? start with doxy probably.

Forgive all the questions, but I really want to understand what everyone is doing and how they are coping.

Thanks so much for your feedback and I hope you'll get to a 99.9% improvement level.

denise

63 year old woman who feels like 100!  CFS since 1998.  Main problem -- severe fatigue with "going into shock" feeling very often.  Tested positive for CPN 3/07.  Severe reaction to azithro (begun slowly in 5/07) - had to stop.  No abx yet --

63 year old woman feels like 80!  CFS since 1998.  Severe fatigue and awful reverse sleep main symptoms.  No Fibro.  Tested positive for CPN 3/07.  Severe reaction to azithro (begun slowly in 5/07) - stopped. 

 patent 6,838,552

TABLE 11
Serological and PCR Responses to Combination Antibiotic Therapy
Months of
Combination
Pa- Titer Antibiotic
tient Diagnosisa IgM IgG Therapy PCR Status
PH FM 800 800 6 months + Asymptomatic
3200 1600 +
800 200 wk+
BL MS 2000 500 9 months + Dramatic
400 3200 9 months wk+ Improvement:
MM CFS/AND 3200 800 1 month.sup. + Improvement;
400 1600 + Relapse
(non-
compliant)
PM CFS 2000 25 6 months + Asymptomatic
400 800 wk+
AM IBD 800 0 6 months wk+ 90%
3200 400 + Improvement
FO MS 800 3200 10 months st+ Improvement
800 800 + in speeds and
400 600 wk+ bowl contin-
400 800 + ence
WM CF 25 25 Pre-illness wk+ Asymptomatic
1000 25 serum <-- st+
50 800 Antibiotics +
50 1600 start wk+
50 400 -
HM CF 2000 100 6 months + Asymptomatic
3200 3200 +
200 800 wk+
CN CFS 3200 800 8 months + 75%
800 800 wk+ Improvement
AN MS/CFS 400 400 wk+ Strength .uparw.
200 3200 st+ Fatigue .dwnarw.
JS CFS 2000 2000 5 months st+ Asymptomatic
(severe) 2000 2000 +
200 800 -
AG IBD 3200 400 9 months + Improvement
800 400 + in joint Sx
800 800 +
800 400 -
AT CF 3200 3200 9 months + Asymptomatic
1600 1600 +
1600 1600 +
800 800 +
400 400 +
LH RA 3200 1600 6 months wk+ Improvement
600 400 wk+
200 50 +
HS MS 2000 400 5 months + Improvement
3200 800 +
50 200 -
ST CFS/FM >1000 100 7 months wk+ Asymptomatic
1000 100 wk+
400 100 +
800 3200 +
100 100 +
RV CF 1000 100 10 months + Asymptomatic
400 1600 +
400 400 -
a CF = Chronic Fatigue < 6 months
CFS = Chronic Fatigue Syndrome
FM = Fibromyalgia
IBD = Inflammatory Bowel Disease
MS = Multiple Sclerosis
AND = Autonomic nervous dysfunction (neural-mediated hypotension)
RA = Rheumatoid Arthritis
IgM >> IgG .fwdarw. immune tolerance to the antigen
IgG >> IgM .fwdarw. successful immune control of the antigen

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 300mg INH, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Tini daily (Taking a break from continuous protocol)

Dear Jim,

WOW -- you are truly amazing.  I simply do not have the scientific eye to wade through things like you have done.  The tables are great and I can see the clear results.  Very encouraging for sure.  I wish they would flesh them out so we could devour all the details. 

I thank you for all the trouble you went to and I do appreciate it.  Just a scaredy cat here and it helps to see results.

Hope you are well.

denise

 

63 year old woman who feels like 100!  CFS since 1998.  Main problem -- severe fatigue with "going into shock" feeling very often.  Tested positive for CPN 3/07.  Severe reaction to azithro (begun slowly in 5/07) - had to stop.  No abx yet --

63 year old woman feels like 80!  CFS since 1998.  Severe fatigue and awful reverse sleep main symptoms.  No Fibro.  Tested positive for CPN 3/07.  Severe reaction to azithro (begun slowly in 5/07) - stopped. 

Jim,

I see alot of 6-7 month "asymptomatic" CFS patients. But the big question is: Where they able to go off the abx or did they move to maintanence?

Also, with the 6-7month "asymptomatic" CFS patients, what was his protocol? I only see abx combos for MS, and other diseases, but no combos for what he used on CFS patients. Specifically the 6-7 month asymptomatic ones.

Guess the best way to find out would be to contact him.

Chris

CAP since 11/06 for CFS. Cpn, Myco P, CMV, HHV-6 infections.
Minocin 200mg daily. All supplements.

CAP since 11/06 for Cpn, Lyme, Bartonella, Babesia, Myco P, CMV, HHV-6 infections.
Rifampin 600mg daily, Zithromax 500mg daily. NAC 2250mg daily. All other supplements. Now Bicillin LA 2.4 mil injection weekly.

 Even more detailed case descriptions in the latter part of Patent: 6,884,784

Response to Antibiotic Therapy

Table 13(a) illustrates typical responses to combination antibiotic therapy in a variety of patients with diagnostic evidence of an active infection by C. pneumoniae. Unlike typical immune responses to infection with infectious agents, most of the included patients have not only detectable IgM titers against the chlamydial genus but in many cases very high IgM titers. With specific therapy over time the IgM titers generally fall, with a rise in IgG titer (as expected). Current methods of detecting antibodies against C. pneumoniae (Indirect immunofluoresence, MIF) are incapable of accurately identifying high IgM titers against C. pneumoniae. Moreover, current procedures are genus specific and not species specific as are peptide-based ELISAs.

With clearing of the pathogen, the IgG titers fall. Concomitant with combination antibiotic therapy, there is generally an improvement of patient symptoms associated with the specific diagnosis indicative of evidence of an active chlamydial infection.

Table 13(b) describes the course of therapy for a number of individuals treated with a combination of agents and their clinical outcomes.

Table 13(c) describes the detailed case histories of the patients undergoing combination therapy, as reported in Table 13(b).

Table 13(d) provides a listing of drugs and standard dosages for those used herein.

TABLE 13a
Serological and PCR Responses to Combination Antibiotic Therapy
Pa- Diag- Titer Time on
tient nosisa IgM IgG Therapy PCR Status
PH FM 800 800 6 months + Asymptomatic
3200 1600 +
800 200 wk+
BL MS 2000 500 9 months + Dramatic
400 3200 wk+ Improvement
MM CFS/ 3200 800 1 month + Improvement;
AND 400 1600 + Relapse
(non-compliant)
PM CFS 2000 25 6 months + Asymptomatic
400 800 wk+
AM IBD 800 0 6 months wk+ 90% Improvement
3200 400 +
FO MS 800 3200 10 months st+ Improvement in
800 800 + speech and bowel
400 800 wk+ continence
400 800 +
WM CF 25 25 Pre-illness wk+ Asymptomatic
1000 25 serum st+
50 800 <--Anti- +
50 1600 biotics wk+
50 400 start -
HM CF 2000 100 6 months + Asymptomatic
3200 3200 +
200 800 wk+
CN CFS 3200 800 8 months + 75%
800 800 wk+ Improvement
AN MS/ 400 400 wk+ Improved Strength
CFS 200 3200 st+ Fatigue decrease
JS CFS 2000 2000 5 months st+ Asymptomatic
(severe) 2000 2000 +
200 800 -
AG IBD 3200 400 9 months + Improvement
800 400 + in joint Sx
800 800 +
800 400 -
AT CF 3200 3200 9 months + Asymptomatic
1600 1600 +
1600 1600 +
800 800 +
400 400 +
LH RA 3200 1600 6 months wk+ Improvement
800 400 wk+
200 50 +
HS MS 2000 400 5 months + Improvement
3200 800 +
50 200 -
ST CFS/ >1000 100 7 months wk+ Asymptomatic
FM 1000 100 wk+
400 100 +
800 3200 +
100 100 +
RV CF 1000 100 10 months + Asymptomatic
400 1600 +
400 400 -
a CF = Chronic Fatigue < 6 months, CFS = Chronic Fatigue Syndrome,
FM = Fibromyalgia, IBD = Inflammatory Bowel Disease, MS = Multiple
Sclerosis, AND = Automatic nervous dysfunction (neural-mediated
hypotension), RA = Rheumatoid Arthritis
IgM >> IgG: immune tolerance to the antigen; IgG >> IgM:
successful immune control of the antigen

TABLE 13b
Treatment Regimens
Treatment Regimen
Phase of Chlamydial Life Cycle
EB (Extra- or EB->RB Stationary Replicating
RB->EB Duration
Patient Sex Diag Intracellular) Transition Phase RB RB
Transition Enhancer (months) Comments
BL M MS Rifampin Flagyl Floxin
2
Flagyl Bactrim,
5
Levaquin
-- -- -- -- --
3 Took a break, had relapse
Flagyl Bactrim,
2
Levaquin
Penicillimine Flagyl Bactrim,
Penicillimine 7
Levaquin
Penicillimine Rifampin INH INH
Penicillimine Probenicid 3
MC M MS Rifampin INH INH
9
Flagyl
Levaquin
6 Probably not compliant
Minocycline
-- -- -- -- --
-- Discontinued
JM M MS Flagyl Floxin
7
Bactrim
Minocycline
Amoxicillin Levaquin
Amoxicillin 4
Bactrim
Amoxicillin Levaquin
Amoxicillin Probenicid 3
Bactrim
LL F MS Flagyl Levaquin
15
Minocycline
Penicillimine Levaquin
Penicillimine Probenicid 1
Minocycline
AN F MS Tenitizole Floxin
7 She was given a copy of the
protocol, but ran her own
therapy
FO M MS
Prednizone 0.25 Phased in over several days
to mitigate effect of therapy
Flagyl Biaxin
2
Biaxin
1 Stopped flagyl due to
persistance of side effects
Kemet Biaxin Kemet
0.5
Kemet Flagyl Biaxin Kemet
6 Began phasing Flagyl back
in over a month
Kemet Flagyl Biaxin Kemet
1 Began 2 week switchover to
Amoxicillin
Amoxicillin Amoxicillin
Amoxicillin Flagyl Biaxin
Amoxicillin 2
Amoxicillin Flagyl Biaxin
Amoxicillin Probenicid 6 Began 6 week phase in of
probenicid
JC F MS Amoxicillin
Amoxicillin 1 Phased in over 7 months.
Amoxicillin
Amoxicillin Probenicid 1
Amoxicillin Bactrim
Amoxicillin Probenicid 1
Amoxicillin INH Bactrim
Amoxicillin Probenicid 7
FW M MS Penicillimine Flagyl Doxicycline
Penicillimine 7
Penicillimine INH INH
Penicillimine Probenicid 5
Bactrim
-- -- -- -- --
-- Stopped treatment
LH F RA Penicillimine Flagyl Minocycline
Penicillimine 11
Penicillimine Flagyl Minocycline
Penicillimine Probenicid 3
-- -- -- -- --
-- 3 PCR negative, symptom
free, but titer @ 1:800.
Decided to stop.
Penicillimine Flagyl Minocycline
Penicillimine Probenicid 2 After symptoms flared, PCR
went positive, and titer to
1:1600, restarted therapy
XX F IC Amoxicillin INH INH
Amixicillan Probenicid 4 Symptoms gone after 4
Bactrim
months of treatment
NC F PG Amox INH INH
Amoxicillin 7 Continued improvement
Bactrim
CH M PG Amoxicillin INH INH
Amoxicillin 3
Levaquin
Amoxicillin INH INH
Amoxicillin 2
Bactrim
-- -- -- -- --
-- Discontinued after all ulcers
cleared up except for those
in poorly blood-supplied leg
RI M PG
Missing patient chart
PL M PG Amoxicillin INH INH
Amoxicillin 2 Non-compliant because
Bactrim
could not afford medicines
-- -- -- -- --
-- 1
Amoxicillin INH INH
Amoxicillin 0.5 Would often only take what
Bactrim
he had left.
-- -- -- -- --
-- 2 Off for 2 months, then flared
Amoxicillin INH INH
Amoxicillin 1 No subsequent follow-up
Zithromax
TW M PG Flagyl Minocycline
4
Amoxicillin INH INH
Amoxicillin 2
Levaquin
-- -- -- -- --
1
Amoxicillin Levquin
4 No improvement
-- -- -- -- --
Moved to topical antibiotics
AM M UC Flagyl Biaxin
11
Amoxicillin Flagyl Biaxin
Amoxicillin 2
INH INH
Amoxicillin Flagyl Bactrim
Amoxicillin Probenicid 5 Now doing very well
INH INH
AG F UC Flagyl Doxycycline
6
-- -- -- -- --
-- Discontinued after
symptoms resolved.
DM F IBD Flagyl
7
Cupramine1 Flagyl Doxycycline
Cupramine Probenicid 5
-- -- -- -- --
-- Discontinued after doing
well clinically; wanted to
start a family.
RP F UC Flagyl Biaxin
5
-- -- -- -- --
-- Discontinued after impvt
AB F CD Flagyl Doxycycline
7
-- -- -- -- --
-- Non-compliant
EU F UC Flagyl Doxycycline
9
-- -- -- -- --
-- 1 Stopped
Amoxicillin Flagyl Doxycycline
Amoxicillin Probenicid 2 Restarted after symptoms
flared. Now doing well again
RR CD Flagyl Doxycycline
2 Colectomy 2 months prior
Amoxicillin Flagyl Doxycycline
Amoxicillin Probenicid 6 Now doing well; no
evidence of active disease
1 125 mg BID

TABLE 13c
Detailed Case Histories
Patient Diag Test data1 Case History
BL MS Row 2 First symptoms began with numbness of the left arm
and leg which rapidly
progressed to a partial Brown-Sequard syndrome
(i.e.-cord myelitis) with an
associated urinary retention. Despite therapy with
corticosteroids, and Beta
interferon he rapidly progressed over the next
three months with an EDSS - 8.0
(triplegic plus speech and swallowing impairments).
A positive CSF PCR and
culture for C. pneumoniae led to treatment with
combination antibiotics. The
patient improved on all spheres of neurologic
function over the following six
months. HIS EDSS score 9 months later was 3.0 with
return to work and routine
athletic activities (e.g.-jogging). His
neurological status remains stable and he
continues on an anti-chlamydial combination
regimen.
MC MS This patient had a ten year history of MS with
evidence of progressive ataxia and
weakness in the legs. Over 5 months his EDSS score
worsened from 7.0 to 8.0.
His CSF was positive by PCR for C. pneumoniae and
he was placed on
combination antibiotics. Over the next six months
he gradually improved in his
balance, coordination and lower extremity strength.
His most recent EDSS score
was 6.5.
JM MS Initially seen with rapidly progressive paraparesis
secondary to MS. He failed to
response to corticosteroids on two successive
occasions. Five months later, his
EDSS score was 7.5. Following a positive C.
pneumoniae PCR he was placed on
combination antibiotics. He has gradually gained
strength in his lower
extremities and five months later was able to walk
with a walker (EDSS = 6.5)
while being maintained on combination antibiotics.
LL MS Patient with a long history (14 years) of secondary
progressive MS with recent
progressive bulbar symptoms, axtaxia, and
paraplegia (EDSS = 8.5). PCR for the
MOMP gene of C. pneumoniae in the CSF was positive.
She was placed on
combination antibiotics with no further progression
of symptoms for the last six
months.
AN MS Row 10 Long history of MS and wheel chair bound for
approximately ten years. She has
received continuous physical therapy to retain leg
muscle tone. Following
approximately 6 months of combination antibiotics,
she was able to stand
unaided and take several unaided steps. She reports
a significant decrease in
fatigue and cognitive dysfunction. She remains on
combination antibiotics and
other supportive medications.
FO MS Row 6 Wheel chair bound with a long history of MS with a
2-3 year progression of
severe dysarthriae and incontinence. On combination
antibiotics (14 months) he
has had improvement of speech and incontinence.
Speech, ability to open
mouth for dentist, stamina all improved. Can stand
better on his own mid-
transfer. He remains wheel chair bound.
JC MS Diagnosis of MS with development of a foot drop
approximately one year prior
to therapy requiring the use of a cane in walking.
Approximately four months
after initiation of combination antibiotic therapy,
patient reports reversal of foot
drop and no longer requires a cane. She continues
on antibiotic therapy.
FW MS Male executive in late 50s with a year history of
MS. Used a cane for a rolling,
unstable gait. Easily fatigued: After 12 months of
combination antibiotics, was
able to walk without cane or excessive fatigue,
although his gait can still wander.
Can easily make it across the parking lot, which
had previously been a challenge.
Stopped antibiotics even though was still PCR
positive; plans to restart therapy if
he has another flare-up.
LH PA Row 14 Patient LH had an active case of RA which was
moderately debilitating.
Following two months of combination antibiotic
therapy, her RA is in complete
remission.
XX IC She responded to combination antibiotics with
complete remission of symptoms
after one month. Cessation of antibiotics resulted
in a return of IC symptoms.
NC PG PCR + 61 year old man who had had lesions for several
years. Large ulcerated lesions
on feet that resolved on combination antibiotic
therapy. Only residual
hypertrophic scars remain.
CH PG PCP + 75-year-old male diabetic with multiple, large,
severe lesions on both legs,
abdomen, and arms. Lesions first formed in 1993.
Severity of process required
chronic nursing home care at an estimated cost of
$300-400 per day. All lesions
above the knee have resolved on combination
antibiotic therapy: lesions only
remain on right lower leg, where inadequate blood
supply offers poor prognosis.
The patient no longer requires nursing home care.
RI PG PCR + Original severe PG lesions on legs required
bilateral amputation. Lesions now
occurring on arms. Treatment with combination
antibiotics has resulted in
resolution of lesions although not complete to
date. [No update - chart missing]
PL PG PCR + 18 year old female with history of leg ulcers.
Multiple PG lesions completely
healed on combination antibiotic therapy. Patient
then lost his job and could
not afford to maintain drug regimen. Upon
re-flaring of ulcers, re-started
therapy and ulcers improved again.
TW PG Severe PG, initiated after a chemical burn in 1991,
but with PCR negative
serology for C. pneumoniae. Patient did not
initially respond to combination
antibiotic therapy. A positive biopsy culture for
C. pneumoniae resulted in the
recent re-institution of combination antibiotics.
However, after no
improvement, patient went off therapy.
AM IBD Row 5 This is a 35 year old male who first presented as a
prostititis ten years ago at the
age of 25. This progressed to acute ulcerative
colitis, involving the entire colon,
which was associated with severe arthritis, iritis,
and weight loss. Diagnosis was
biopsy confirmed. Control required high doses of
corticosteroids and azacol.
Attempts to reduce steroids resulted in partial
control of symptoms. Six months
prior to initiation of combination antibiotic
therapy, patient was experiencing
frequency (20-25 times per day), frank bleeding,
and mucus in the stool. Patient
on combination antibiotics for one year. Following
significant stress, patient had
significant increase in symptoms. Alteration of
antibiotic combination has
resulted in normal bowel habits with no mucus and
minimal blood. Associated
neuropsychiatric manifestations of cognitive
dysfunction and depression have
resolved. Steroids have been discontinued.
AG IBD Row 12 This is a 27 year old white female with two month
history of fulminate,
progressive ulcerative colitis which had not
responded to the usual medical
therapy. A total abdominal colectomy with ileostomy
and rectal pouch was
done. The microscopic appearance confirmed
ulcerative colitis. Following the
colectomy, the patient experienced neurologic
symptoms, fatigue, myalgias,
arthralgias, and a acneoform skin rash. Serology
was performed for C.
pneumoniae and was positive with an IgM of 1:3200,
IgG 1:400, and PCR positive.
Therapy with combination antibiotics was initiated.
After six months of
antimicrobial therapy, her serology was IgM 1:800,
IgG 1:400, and PCR positive.
The neurologic symptoms, fatigue, myalgias,
arthralgias, and acneoform rash
resolved completely. There was no further evidence
of inflammatory bowel
disease, and the ileostomy was successfully
anastomised to the rectal stump. The
patient has felt more energetic. Serology after 1
year was PCR negative.
DM IBD This 37 year old female had a six year history of
inflammatory bowel disease
(uncertain CD or UC) associated with painless
rectal bleeding, arthritis, myalgias,
skin ulceration, abdominal cramping/diarrhea, and
rectal fistulas. She had
increasing fatigue which caused her to frequently
miss work as a minor
executive. On combination antibiotic therapy, all
symptoms resolved but
recurred with cessation of antibiotics while on
vacation. Reinstitution of
combination antibiotics resulted in a second
remission of symptoms.

Prior to
combination antibiotic therapy, she had not gone
longer than 3 months without
an anal manifestation of IBD. She has been symptom
free of IBD for over a year.
RP IBD Patient presented with proctocolectomy and
ileostomy due to UC. Following a
flu-like illness in 1993, she became fatigued and
anemic with blood-tinged
diarrhea. Examination of her ileostomy pouch
revealed inflammation and
ulcerations. Upper GI series/small bowel series
revealed no abnormalities and
no cause of her anemia was diagnosed. On
combination antibiotics her
ileostomy activity was more regular and less
spastic. She claimed to feel better
with higher energy levels and ceased antibiotic
therapy. Six months post-
antibiotic therapy she remained asymptomatic other
than a moderate anemia.
AB IBD Patient with long history of CD involving small
bowel, large bowel, and anus.
She had been treated with a small bowel resection
and fissurectomy. She
continued to suffer from numerous rectal fistulas.
On combination antibiotics
she experience some symptomatic improvement but
failed to completely resolve
her IBD symptoms. She discontinued antibiotics due
to a probable chronic
Herxheimer reaction. Currently she is lost to
follow-up.
EU IBD Colitis with inflamed distal sigmoid colon and
proctitis associated with frequent
loose stools with significant mucus. Following six
weeks of combination
antibiotic therapy with a significant reduction in
symptoms. Shortly after
cessation of antibiotics her symptoms return.
Reinstitution of antibiotics
resulted in a second remission of the majority of
her symptoms with resolution
of her proctitis on visual exam.
NM CFS Vanderbilt University initial patient that resulted
in our first association of C.
pneumoniae, initially complained of the insidious
onset of debilitating fatigue.
This was associated with a severe cognitive
dysfunction that disrupted his ability
to function as the supervisor of a clinical
diagnostic laboratory. Despite six
months of intensive diagnostic efforts by the
Infectious Disease Clinic at
Vanderbilt no definitive or presumptive diagnosis
could be made. A subsequent
high antibody titer against C. pneumoniae led to
standard anti-chlamydial
antibiotic therapy over a three month period with
gradual disappearance of
fatigue and cognition symptoms. On cessation of a
fluroquinolone antibiotic,
symptoms returned within two weeks. He was placed
on combination
antibiotics with complete reversal of symptoms
after six months. He remains
asymptomatic.
JS CFS Row 11 Academic physician with a greater than 10 year
history of CFS. Cognition
problems resulted in his grounding himself as a
private pilot. Initial treatment
with combination antibiotics results in an apparent
Herxheimer reaction with
resolution over a two week period with gradual
improvement in symptoms.
After three months therapy, he piloted a light
aircraft under instruments from
Florida to North Carolina. He remains on
combination antibiotics for over a
year and is asymptomatic.
PM CFS Row 4 Physician with long-standing CFS. Treated with
combination antibiotics with
gradual resolution of symptoms. During course of
treatment developed cardiac
myopathy. Currently asymptomatic from CFS. Cardiac
myopathy resolved over
six month period on combination antibiotics.
MM CFS Row 2 CFS and AD. Resolution of postural tachycardia over
1 month combination
antibiotic therapy. Partial reversal of fatigue
during this period. Patient non-
compliant after one month and lost to follow-up.
PH FM Row 1 Three year history of debilitating FM following the
stress of being a stalking
victim. Patient relatively asymptomatic after nine
months combination
antibiotic therapy.
CN CFS Row 9 Five year history of severe CFS with debilitating
cognitive dysfunction and
depression. Gradual improvement on combination
antibiotics for
approximately nine months. Estimated 75% of normal
function.
PG CFS Ten year history CFS with cognitive dysfunction.
Complete response to
combination antibiotics over a course of one year.
AT CF Row 13 Moderate fatigue and cognitive dysfunction
following acute infectious illness.
Depression was major problem. During one year
course of combination
antibiotics fatigue and cognitive dysfunction
largely reversed. During mid-
course of therapy patient developed acute anxiety
attacks relieved by anti-
porphyrin therapy.
WM CF Row 7 CF following acute stress. Pre-illness serum
negative for anti-Chlamydia
pneumoniae antibodies which peaked six weeks
following stress. Pre-illness PCR
was weak positive that became strongly positive. On
combination antibiotic
therapy at 3 months became asymptomatic. Cessation
of antibiotics resulted in
symptomatic relapses. Currently asymptomatic with
low serum antibodies and
negative PCR.
HM CF Row 8 Medical student with short history of CF and
cognitive dysfunction affecting
studies. Combination antibiotics over a multi-month
course resulted in
complete reversal of symptoms.
ST CFS Row 17 Mother of Patient AT. Three year history of CFS
with FM. Combination
antibiotic therapy has resulted in partial reversal
of symptoms allowing her to
retain a job in jeopardy. Estimated 80-90% normal
function currently.
RV CF History of fatigue although non-incapacitating.
Combination antibiotic therapy
has resulted in 100% return to normal function.
EB CFS Teen-ager with long history of CFS resulting in
home-bound schooling. On
combination antibiotic therapy returned to school
and recently graduated.
Recovery has not been complete probably secondary
to non-compliance in
therapy.

 

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 300mg INH, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Tini daily (Taking a break from continuous protocol)

It looks like Stratton uses Levaquin, Bactrim and Biaxin also. This is interesting because my LLMD has found many patients who did years of different combos (doxy, zith, flagyl) and improved, but did not go into remission. He found that if he did 3 months of Levaquin or Bactrim, Zith they would completely recover and walk away from many years of disability. Dr. B (lyme Dr.) also has said this.

I am thinking about doing Bactrim/Zith or Biaxin for a while and then eventually adding back in doxy and flagyl. Another choice is just Levaquin for a while, but I do not hear good things about tendons or worse.

Best,

Chris

CAP since 11/06 for CFS. Cpn, Myco P, CMV, HHV-6 infections.
Minocin 200mg daily. All supplements.

CAP since 11/06 for Cpn, Lyme, Bartonella, Babesia, Myco P, CMV, HHV-6 infections.
Rifampin 600mg daily, Zithromax 500mg daily. NAC 2250mg daily. All other supplements. Now Bicillin LA 2.4 mil injection weekly.

D W

Chris

'He found that if he did 3 months of Levaquin or Bactrim, Zith they would completely recover and walk away from many years of disability.'

Interesting. I'd be grateful for a substantiation of this.

D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. Now no medication. Morning BP typically 105/75]

D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. No medication now. Morning BP typically 110/75]

DW,

Below is Joseph Burrascano, MD's latest info on treatment for "bartonella like organisms". 80% of his patients test negative for Bart, but when he puts them on 3 months of Levaquin, many go into remission (who have been on years of orals and IV). There is a video online you might find by googling where he talks of patients in wheelchairs who "walk away" etc...Interesting, as alot of CFIDS, CPn, and Lyme patients never think of taking a Quinolone. I agree, the side effects are risky, but he has found high doses of magnesium (intramuscular) reduce risk for tendon problems.

Best,

Chris

MANAGING LYME DISEASE, 15th edition, September, 2005
Page 23 of 33

BARTONELLA-LIKE ORGANISMS
It has been said that Bartonella is the most common of all tick-borne pathogens. Indeed, there seems to be a
fairly distinct clinical syndrome when this type of organism is present in the chronic Lyme patient. However,
several aspects of this infection seem to indicate that this tick-associated strain of Bartonella is different from
that described as “cat scratch disease”. For example, in patients who fit the clinical picture, standard
Bartonella blood testing is commonly non-reactive. Furthermore, the usual Bartonella medications do not
work for this- they suppress the symptoms but do not permanently clear them. For these reasons I like to refer
to this as a “Bartonella-like organism” (BLO), rather than assume it is a more common species.

Indicators of BLO infection include CNS symptoms out of proportion to the other systemic symptoms of
chronic Lyme. There seems to be an increased irritability to the CNS, with agitation, anxiety, insomnia, and
even seizures, in addition to other unusually strong symptoms of encephalitis, such as cognitive deficits and
confusion. Other key symptoms may include gastritis, lower abdominal pain (mesenteric adenitis), sore soles,
especially in the AM, tender subcutaneous nodules along the extremities, and red rashes. These rashes may
have the appearance of red streaks like stretch marks that do not follow skin planes, spider veins, or red
papular eruptions. Lymph nodes may be enlarged and the throat can be sore.

Because standard Bartonella testing, either by serology or PCR, may not pick up this BLO, the blood test is
very insensitive. Therefore, the diagnosis is a clinical one, based on the above points. Also, suspect infection
with BLO in extensively treated Lyme patients who still are encephalitic, and who never had been treated with
a significant course of specific treatment.

The drug of choice to treat BLO is levofloxacin. Levofloxacin is usually never used for Lyme or Babesia, so
many patients who have tick-borne diseases, and who have been treated for them but remain ill, may in fact
be infected with BLO. Treatment consist of 500 mg daily (may be adjusted based on body weight) for at least
one month. Treat for three months or longer in the more ill patient. It has been suggested that levofloxacin
may be more effective in treating this infection if a proton pump inhibitor is added in standard doses.

Another subtlety is that certain antibiotic combinations seem to inhibit the action of levofloxacin, while others
seem to be neutral. I advise against using an erythromycin-like drug, as clinically such patients do poorly. On
the other hand, combinations with cephalosporins, penicillins and tetracyclines are okay. Alternatives to
levofloxacin include rifampin, gentamicin and possibly streptomycin.

Levofloxacin is generally well tolerated, with almost no stomach upset. Very rarely, it can cause confusion-
this may be relieved by lowering the dose. There is, however, one side effect that would require it to be
stopped- it may cause a painful tendonitis, usually of the largest tendons. If this happens, then the
levofloxacin must be stopped or tendon rupture may occur. Unfortunately, levofloxacin and drugs in this family
cannot be given to those under the age of 18, so other alternatives, such as azithromycin, are used in
children.

Incidentally, animal studies show that Bartonella may be transmitted across the placenta. No human studies
have been done.

Chris

CAP since 11/06 for CFS. Cpn, Myco P, CMV, HHV-6 infections.
Minocin 200mg daily. All supplements.

CAP since 11/06 for Cpn, Lyme, Bartonella, Babesia, Myco P, CMV, HHV-6 infections.
Rifampin 600mg daily, Zithromax 500mg daily. NAC 2250mg daily. All other supplements. Now Bicillin LA 2.4 mil injection weekly.

DW,

Below is Joseph Burrascano, MD's latest info on treatment for "bartonella like organisms". 80% of his patients test negative for Bart, but when he puts them on 3 months of Levaquin, many go into remission (who have been on years of orals and IV). There is a video online you might find by googling where he talks of patients in wheelchairs who "walk away" etc...Interesting, as alot of CFIDS, CPn, and Lyme patients never think of taking a Quinolone. I agree, the side effects are risky, but he has found high doses of magnesium (intramuscular) reduce risk for tendon problems.

Best,

Chris

MANAGING LYME DISEASE, 15th edition, September, 2005
Page 23 of 33

BARTONELLA-LIKE ORGANISMS
It has been said that Bartonella is the most common of all tick-borne pathogens. Indeed, there seems to be a
fairly distinct clinical syndrome when this type of organism is present in the chronic Lyme patient. However,
several aspects of this infection seem to indicate that this tick-associated strain of Bartonella is different from
that described as “cat scratch disease”. For example, in patients who fit the clinical picture, standard
Bartonella blood testing is commonly non-reactive. Furthermore, the usual Bartonella medications do not
work for this- they suppress the symptoms but do not permanently clear them. For these reasons I like to refer
to this as a “Bartonella-like organism” (BLO), rather than assume it is a more common species.

Indicators of BLO infection include CNS symptoms out of proportion to the other systemic symptoms of
chronic Lyme. There seems to be an increased irritability to the CNS, with agitation, anxiety, insomnia, and
even seizures, in addition to other unusually strong symptoms of encephalitis, such as cognitive deficits and
confusion. Other key symptoms may include gastritis, lower abdominal pain (mesenteric adenitis), sore soles,
especially in the AM, tender subcutaneous nodules along the extremities, and red rashes. These rashes may
have the appearance of red streaks like stretch marks that do not follow skin planes, spider veins, or red
papular eruptions. Lymph nodes may be enlarged and the throat can be sore.

Because standard Bartonella testing, either by serology or PCR, may not pick up this BLO, the blood test is
very insensitive. Therefore, the diagnosis is a clinical one, based on the above points. Also, suspect infection
with BLO in extensively treated Lyme patients who still are encephalitic, and who never had been treated with
a significant course of specific treatment.

The drug of choice to treat BLO is levofloxacin. Levofloxacin is usually never used for Lyme or Babesia, so
many patients who have tick-borne diseases, and who have been treated for them but remain ill, may in fact
be infected with BLO. Treatment consist of 500 mg daily (may be adjusted based on body weight) for at least
one month. Treat for three months or longer in the more ill patient. It has been suggested that levofloxacin
may be more effective in treating this infection if a proton pump inhibitor is added in standard doses.

Another subtlety is that certain antibiotic combinations seem to inhibit the action of levofloxacin, while others
seem to be neutral. I advise against using an erythromycin-like drug, as clinically such patients do poorly. On
the other hand, combinations with cephalosporins, penicillins and tetracyclines are okay. Alternatives to
levofloxacin include rifampin, gentamicin and possibly streptomycin.

Levofloxacin is generally well tolerated, with almost no stomach upset. Very rarely, it can cause confusion-
this may be relieved by lowering the dose. There is, however, one side effect that would require it to be
stopped- it may cause a painful tendonitis, usually of the largest tendons. If this happens, then the
levofloxacin must be stopped or tendon rupture may occur. Unfortunately, levofloxacin and drugs in this family
cannot be given to those under the age of 18, so other alternatives, such as azithromycin, are used in
children.

Incidentally, animal studies show that Bartonella may be transmitted across the placenta. No human studies
have been done.

Chris

CAP since 11/06 for CFS. Cpn, Myco P, CMV, HHV-6 infections.
Minocin 200mg daily. All supplements.

CAP since 11/06 for Cpn, Lyme, Bartonella, Babesia, Myco P, CMV, HHV-6 infections.
Rifampin 600mg daily, Zithromax 500mg daily. NAC 2250mg daily. All other supplements. Now Bicillin LA 2.4 mil injection weekly.

 Yes Chris, it is interesting. I vaguely recall from past conversations with Dr. Stratton that actual clinical experience over time found some diminished response with Bactrim. But I'll have to check this out directly with him. I've also read that Levaquin has had serious problems in longer term use (the tendon rupture and damage you mention) and wouldn't touch the stuff.

It probably makes sense in any long term treatment to think about alternating with a different abx if treatment has reached plateau of improvement. This could obviously go both ways, ie that patients on Biaxin as their starting replacement for Azith might benefit from a change to Azith if they have plateaued. It is often a matter of getting at tissues not as well penetrated by one abx, or getting populations of bacteria more sensitive to one abx than another than it is that the abx is "better." This is why the clinical art of treatment is important here, where the physician listens to the path of improvement and has enough savvy to know when to tailor the program to the patient's response.

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 300mg INH, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Tini daily (Taking a break from continuous protocol)

Denise, i sent you a message.  

Memphis, TN. adrenal fatigue and CFS.  6/26/07- CPN Titer 1:256 (normal 1:16); 6/27/07-started NAC; 7/2/07-started doxycycline 100 mg twice daily; 7/19/07 started Biaxin 250mg per day.

Mphs, TN. CFS, hypoT (Hashi), adrenal fatigue, hormonal inbalance. right arm neuropathy-getting better. cpn, myco, EBV, CMV, HHV-6. Cap began in 6/07. NAC 2400mg, mino 100mg bid, biaxin 500mg bid. cytomel, flagyl bid continuously.

Russell Farris (the author of The Potbelly Syndrome, who has occasionally visited these forums) found clarithromycin to be a complete miracle for him; but then the improvements went away when he stopped it, and did not reappear when he tried taking it again.

I have not taken levofloxacin, but I did brave the possibility of tendon problems (don't know much about that, but do have firsthand anecdotes from people I know) to take moxifloxacin. Took it daily without interruption for ~4 months with daily doxy and tini last fall - and was in fact worsening over that whole period, to improve again only after starting vitamin D. I wouldn't rule out trying it again.

The main thing is that 6-8 months was, for most of that, on full continuous protocol of all three phases of Cpn life cycle, e.g. amoxi/flagyl/INH, amoxi/flagyl/Biaxin, amoxi/probenecid/flagyl/INH/Bactrim. To paraphrase Thomas Hobbes description of life, this protocol must have been cruel, brutal and short. How they got any compliance at all given the kinds of reactions we know about, I have no idea. In fact, Dr. Stratton reports that the drop out rate using the continuous protocol for CFS patients was very high.

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 300mg INH, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Tini daily (Taking a break from continuous protocol)

Yes, but was there relapse? Did he follow up with these patients? This is important because in reality, most who take Amox for a period of time feel tremendously better (some just stay on it indefinetely) but usually 6 mos to a yr after going off it they relapse. Even with Flagyl. One Dr has told me this is because the bugs get into the bone marrow, avery difficult place to eradicate.

Seems as though we all have to be on some kind of maintenence to keep things in check.

Chris

CAP since 11/06 for CFS. Cpn, Myco P, CMV, HHV-6 infections.
Minocin 200mg daily. All supplements.

CAP since 11/06 for Cpn, Lyme, Bartonella, Babesia, Myco P, CMV, HHV-6 infections.
Rifampin 600mg daily, Zithromax 500mg daily. NAC 2250mg daily. All other supplements. Now Bicillin LA 2.4 mil injection weekly.