Below is information on some of the protocols that are used in chronic, late and refractory Lyme. Not early Lyme which is usually more easily treated. Please also check the co-infections page. It is more than likely that there is a happy medium somewhere between the two political extremes of treatments. Many people do get well with a well thought out minimum conservative treatment. However, for many of us with multiple infections and or late lyme disease, that just ain't effective.
Here's a wonderful supportive article for chronic lyme patients
written by lymenet poster Minoucat
Lyme and everyday life —
what changes?
There has never in the history of this illness been one study that proves even in the simplest way that 30 days of antibiotic treatment cures Lyme disease. Sometimes it does, sometimes it takes a lot longer.
Just as when AIDs first came to be known some people are treating themselves. Because many doctors refuse to believe the lyme tests' inaccuracy rates or refuse to take the time to learn about treating late spirochetal illnesses. And because patient recognized lyme specialists are not always available or the patient cannot afford them. If you are already one of these people- please be careful, please be safe. Do your research. Cross reference everything many times- you have to sometimes dig for information.
If you are already self treating, ask around on the support groups for people to privately mail you links to reliable online companies. Some of the online companies are legitimate and trustworthy but others will just steal your money. And keep trying to find a doctor who will treat you!
Burrascano Burrascano is one of the pioneers of chronic lyme treatment. He isn't GOD, he isn't the final word, but he's very good. Here is the original manual and the updated one.
Brorson's studies The Brorsons are 2 of the worlds best lyme researchers. Their studies are very interesting, solid and practical. The Brorsons Rock!!
Martin Atkinson-Barr This researcher came up with a lot of interesting stuff on metrodinazole and it's use for the cyst life stage of lyme. Cross check with studies on the strains/research page.
Raw notes on Gasser (txt file) (very raw notes) An eastern European treatment protocol for lyme. Unfortunately it does not seem to work as well for as many people in North America. It may be they are treating a different co-infection there.
Herbs (separate page- pop up
window)
Controversies
in Neuroborreliosis
by Audrey Stein Goldings, M.D.
Updated October, 2002
Unofficial report on studies just completed at Columbia University Evidence of benefits of extended treatment. From within CALDA website. This is not a news release but an internal area of CALDA where guests are welcome. (Posted 11/27/2004) Here is also a report on the OLDER study which was discredited because it was not double blind. (Double blind treatment studies in severe illnesses are generally not required for peer review... The requirements demanded of the researchers in the new study were unethical)
Links to hyperbaric oxygen sites
RESOURCES; Online Medical Dictionaries,
Drug References, free meds,
Drug Interactions
Nuero-lyme; drugs which cross the blood brain barrier & why that can be important.
Tick-Borne
Illness Memorial Page (pop up link off site)
Mefloquine [Mepron] and Artemesia: A Prospective Trial of Combination Therapy in Chronic Babesiosis (off site pop up) Dr. Richard Horowitz, 13th International Scientific Conference on Lyme Disease & Other Tick-Borne Disorders. Emphasis: Pediatrics & New Research, Hartford Marriott Farmington, CT 24–26 March 2000
Burrascano
Standard
protocol of J. Burrascano Jr., M.D.
* NEW! Update, 2002 Burrascano
Burrascano 's treatment protocol is very good. He is one of the pioneers of long term antibiotics for chronic Lyme. There is one thing I wonder about; the warning he & others give on tetracycline interfering with flagyl seems to be based on one anecdotal report of one elderly man's treatment failure- not on studies or very many anecdotes. I'm sorry, I can't find that report again on medline. I just looked for a half hour. I did see it there before- it's the only thing I found which might support that theory. Darn, I wish I had saved it.
Dr. Martin Atkinson-Barr CPhys PhD (Calabasas, CA)
Atkinson-Barr has done a small study "Metronidazole therapy in the treatment of chronic Lyme disease", presented on the International Scientific Conference On Lyme Disease And Other Spirochetal Tick-Borne Disorders, April 1999, New York City/New Jersey, USA, by Martin Atkinson-Barr CPhys PhD (Calabasas, CA) and Vernon Padgett, MD (Calabasas, CA) together with Richard Horowitz MD (Hyde Park, NY).
Atkinson-Barr's personal web site is no longer up and the study can't be found online right now (4/2007).
He used to work for the company that makes it, however, the Brorson's (see just below) have also done a study on metronidazole (flagyl) which verifies his work. Flagyl has an effect on the cyst shaped life cycle of lyme and other spirochetes. Tinidazole supposedly has less side effects and is supposed to be more effective on some strains than metronidazole. As far as I know there have been no studies on this. It is used more often in Europe and I think in South America. top
Brorson O, Brorson SH. Department of Microbiology, Vestfold Sentralsykehus, Tonsberg, Norway.
The Brorson's
ROCK! :) They have done many useful and practical studies
which are invaluable in understanding Bb and other spirochetes. Their
studies are well done. Most of these links are to medline abstracts unless
otherwise noted. For people skeptical of cyst forms please check this
page. Basically the cyst forms or phase of the bacteria are eggs and
encysted larvae.
An
in vitro study of the susceptibility of mobile and cystic forms of Borrelia
burgdorferi to hydroxychloroquine
Fairly new study which adds hydroxychloroquine to flagyl and tinidazole
to the drugs which are known to have an effect on cyst stages of the B.b.
spirochete.
Association between
multiple sclerosis and cystic structures in cerebrospinal fluid.
FULL TEXT. Amazing study. Compares the unnamed spirochetes which they
have found in MS patients CSF with Bb spirochetes. By focusing on the
smaller cystic phase of spirochetes they have been able to detect these
similar bacteria in MS. Many people with an MS diagnosis may actually
have an untreated spirochetal illness. Some (not all) of those spirochetes
have turned out to be Lyme in other studies.
An
in vitro study of the susceptibility of mobile and cystic forms of Borrelia
burgdorferi to metronidazole. Abstract, medline.
"Our observations may help efforts to treat resistant infections
caused by B. burgdorferi with a combination of MZ and other antibiotics
in order to eradicate both cystic and mobile forms of B. burgdorferi."
In
vitro conversion of Borrelia burgdorferi to cystic forms in spinal fluid,
and transformation to mobile spirochetes by incubation in BSK-H medium.
abstract.Basically this in part explains why current
spinal tap tests for lyme don't work very well.
For more Brorson's search pub med
Sam Donta,M.D. in Boston is an advocate of tetracycline in the treatment of Lyme and some patients believe they have had the best luck with this treatment. ***However- tetracycline does NOT cross the blood brain barrier. It will do nothing for an infection located within the brain or CNS. Where there usually is infection with chronic lyme. It is possible he is working with some local strains which have not crossed the bbb, but that is speculative and risky. Adult lyme spirochetes have been found in brain tissue upon autopsies. The Cyst phases are found in spinal fluid.
Donta has come up with interesting ideas on the presentation and treatment of Lyme.
http://www.chronicfatiguesupport.com/library/showarticle.cfm/id/3579
"Based on those studies, and the hypothesis that late Lyme Disease symptoms are due to persisting intracellular infection, we have been successfully treating patients using the combination of a macrolide and hydroxychloroquine (10). As regards "CNS" disease, there is no evidence that ceftriaxone is more successful than either the tetracyclines or the combination of macrolide and hydroxychloroquine; If our presumption that the pathogenesis of the disease involves the localization of the borrelia to the endothelial cells of the blood vessels serving the nervous system or to glial or neural cells is correct, then one would not need to have a drug that can cross the blood-brain barrier to be effective. Indeed, the tetracyclines can cross the blood-brain barrier to some extent, and were used when initially introduced into clinical medicine for the treatment of meningitis, with some success. "
"...Patients generally had some response to doxycycline, but it was usually not complete, nor long-lasting. Tetracycline may be more effective than doxycycline simply because of the greater dose, i.e., 100mg of doxycycline twice daily is not equivalent to 500mg of tetracycline three times daily;..."
It is interesting here that he says "the tetracyclines can cross the blood-brain barrier to some extent" and yet uses tetracycline and not doxycycline. Tetracycline itself does not cross the bbb except in negligible amounts. It is also interesting what he says about tetracycline being more effective than doxycycline "...simply because of the greater dose..." What?!????
Doxycycline, another drug in the tetracycline family, does cross
the bbb sufficiently when used in high enough doses. Those doses are generally
between 300 - 700mg per day depending on body weight and probably other
factors. But below those doses doxy does not penetrate the bbb in an effective
amount. Minocycline is rumored to have even better penetration than doxy
through the bbb because it is more fat soluble.
Donta believes that Bb doesn't cross the blood brain barrier, but that it only effects the blood vessels feeding the brain. He draws this from an analogy to Syphilis. However, this flys in the face of evidence. Both T. pallidum and Bb have been found in the brain tissue on several occasions and the lyme boards are full of people who have relapsed or gotten much worse on tetrocycline. Others have sworn by this treatment. It is possible he is working with patients who have strains which have not crossed the bbb. Who knows? Why take a chance?
His Treatment protocol& theory that hydrochloroquine reduces the acid inside cells;
http://www.cfs.inform.dk/Infections/donta02.txt
"In our studies, intracellular-type antibiotics such as tetracycline or the combination of one of the erythromycin-type
antibiotics (e.g., clarithromycin - Biaxin, azithromycin-
Zithromax) and hydroxychloroquine ( a drug which changes the
pH inside cells to be less acid, thus allowing the
erythromycin-type antibiotics to be effective) given over a
number of months (6-18 months, sometimes longer) "
Steere contradicts himself about Lyme. I won't quote him here as in my opinion he is a sociopath. You can easily look him up yourself on the web if you like. Both he and Segal are now leading advocates of the popular theory of the propensity of the human body to attack itself in the absence of pathogens; auto-immunity. This, according to them, causes MS and "post lyme syndrome" and various other syndromes. Therefore such chronic diseases don't need to be treated. Because, hey, chronic lyme really isn't an infection. There's no bacteria there. It's just suicide on a microscopic level. Who cares? Steere tends to change his mind a lot depending on which way the wind blows. OTOH Steere has recorded many observations of the effect of late untreated lyme on the brain and other tissues. From his own patients one assumes. Strange coincidence...
Both Steere and Segal have had an enormous negative effect on chronic or late lyme patients access to effective treatment. And to further research. Steere in particular did a compete about face a while ago in his own research. Wonder why that is? One reason may be that they have conflicts of interest as insurance company advisors. Perhaps they also have a secret fan club for the perpetuators of the Tuskagee and Oslo Syphilis studies. I'm not sure, but some of us have very strong feelings about this. You could always try and contact them and ask them yourself.
Maybe he's just jealous because his first theory, that it was a virus, was disproved. As were many of his other assssertations. Anyhow, he helped write the Infectious Disease Society of America's guidelines which prevent access to treatment for chronic lyme for many people and make the members of the IDSA look like they don't know what they're doing when they try to practice on chronic lyme patients. Too bad for everyone concerned. It really is.
Some day someone is probably going to go postal on him as you can see in this tightly spun article. It probably just can't be helped. Poor guy. After checking that out you could do a google search and see how his other patients feel about him.
For contrast, in a little while check the soon to be released studies on longer term treatment by Dr Fallon at Columbia University. (Posted 11/27/2004) and for godsakes read up on the cyst phase of Bb and it's usual presentation in the CSF and it's susceptibilities.
It is very possible there may be more cures or remissions when a "cyst buster" is added to rocephin. It would make sense. This has just recently become common treatment. Flagyl or Tinidazole have the added benefit of treating and preventing Clostridium dificile flare-ups as well, which have been associated with IV antibiotics. These drugs may be much easier to tolerate as the bbb becomes less compromised through rocephin.
Especially keep common lyme co-infections in mind. Along with the co-infections Babesia, Bartonella, Erlichiosis etc yeast overgrowth is a common problem. This is one of the reasons specialists will use a combination of various antibiotics as a last resort to treat chronic lyme, particularly when the heart and brain are involved. The tests on most of these organisms are not particularly accurate for various reasons. Using various things will tend to knock out a broad spectrum of crap. Sometimes literally. There is evidence that some strains of lyme can lower the immune system, both in studies and from patient/doctor observations. Chronic Lyme is most often a cluster of multiple infections. The consequences of not treating or treating insufficiently can sometimes be seizures, paralysis, encephalitis, heart block, debilitating exhaustion and pain, and bone disintegration.
Treating multiple infections, which occur frequently with both Lyme and Syphilis (with or without antibiotic treatment) may not be something many doctors are familiar with. Different infections may change the symptoms of other infections, or symptoms of different infections may be hard to distinguish from each other. For instance both lyme and syphilis tend to lower the overall body temperature, while STARI or Masters disease may not. It is possible most strains of Lyme could have an effect in lowering temperatures in co-infections where people usually show high fevers. Be aware of these things and talk to your doctor about any changes which seem significant.
Lyme has at least 3 forms in it's life cycle; Adult (spiral form), egg (cyst form), and L forms which look to be young "just hatched" spirochetes. This is an important consideration in treating chronic lyme. Antibiotics which work on one form will not work on the other. However it's extremely likely that L forms would be affected by abx which work on adult forms. This is not the terminology used in microbiology, but they are easily recognized terms in biology and more easily understood.
Be careful. With long term antibiotic treatment sometimes another bacteria, virus, protozoa, fungus or worm that is not effected by the particular antibiotic(s) you are taking will flare up and become a problem. The human body can carry many bacteria or parasites that do not usually effect that person, but a change in the environment of the body can sometimes make that environment more conducive to something actively flaring up and becoming a problem. These are generally not "antibiotic resistant", but may be resistant or unaffected by the antibiotics a person is currently taking. It is important to keep an eye open for these things.
Another note, many lyme patients have had problems with infusions when the dilution is too strong or the infusion run too fast. Although there have been no formal studies on this in regards to the borrelia which cause lyme, a closely related borrelia bacteria which causes relapsing fever has been documented to increase blot clotting during the herx.
This is something which is seldom addressed as a co-infection, but many Lyme patients may in fact have viral co-infections in addition to Lyme. These may be Epstein Barr or other common opportunistic viruses- which many Lyme patients on boards have complained of, or more obscure things such as tick borne Powassan Virus, Deer Tick Virus or Colorado Tick Fever (see co-infections page). Western Nile Virus is actually a close relative of Powasson and Deer Tick Virus, but is usually not as severe. Some patients are treated with Aclovir or have used Olive Leaf as an herbal tea or extract with some success, depending on the virus.
Warning- if you feel you may have a mixed infection which includes a virus, it may not be to your benefit to emphasize the virus unless you trust your doctor and s/he knows what s/he is doing. It could be seen as a "reason" (excuse) not to treat you for the bacterial infections. Several people with lyme disease have experienced refusal of treatment from doctors for acute meningitis or encephalitis with the excuse given that it was "just a transitory viral infection" or "flu" and that it would "just go away". Those doctors had nothing to verify that, it was just off the top of their head. These patients later improved on antibiotics. I was one of them.
This term is short for the "Jarisch- Herxheimer" reaction . When certain bacteria including Lyme are killed they release toxins which can increase your symptoms for a while. If you are herxing- you know that the antibiotic is having an effect. Some of your symptoms seem worse- others may start to feel better. Some symptoms you've never had before may come up.
Herxes can be occasionally be scarey and it is sometimes difficult to know exactly what is going on. People are usually advised by experienced doctors to cut back on medication if a herx is so strong it could do permanent damage. OTOH sometimes there is no earthly way around "no pain no gain". It can be difficult with some medications (Flagyl for instance) to know whether an effect is a herx or a side effect of the medication and a herx can be also confused with allergies. Lyme herxes tend to take longer to manifest than syphilis herxes. Syphilis herxes can take effect within an hour of treatment. Lyme commonly takes a day or 3 or 4, but not all lyme strains follow that timing. There's a lot of variation between strains and not much information on them. Co-infections can complicate this.
Here are some links which can explain this in more detail;
http://www.angelfire.com/biz/romarkaraoke/Herx.html
Links to hyperbaric oxygen sites
I haven't really looked at this very much. Mostly because I can't afford it. Here are links to a pdf file and a clinic. If this interests you you should search for more detailed information on other sites.
http://www.ams.ubc.ca/clubs/aims/pdf/AIMS_newsletter_v4i2.pdf
http://www.hbotoday.com/
Chico Hyperbaric Center . Here is their page on Lyme and HBOT;
http://www.hbotoday.com/lymediseasearticle.htm
The following is the basis of all heat related treatments;
from; http://www.jci.org/cgi/content/full/107/6/651 Borrelia burgdorferi and Treponema pallidum: a comparison of functional genomics, environmental adaptations, and pathogenic mechanisms Stephen F. Porcella and Tom G. Schwan Laboratory of Human Bacterial Pathogenesis, Rocky Mountain Laboratories, National Institute of Allergy and Infectious Diseases, NIH, Hamilton, Montana, USA
"With regard to high temperature, both B. burgdorferi and T. pallidum lack factor 32 (6, 7), a primary mediator of the heat-shock response, although some evidence exists that B. burgdorferi can mount a heat shock response while T. palladium cannot. In vitro cultivation of B. burgdorferi at various temperatures demonstrates that the spirochete replicates most quickly at 37°C. An increase in temperature to 39°C retards growth significantly, while a 24 hour exposure at 41°C kills all spirochetes in the culture. Therefore, the optimal growth temperature of B. burgdorferi is only 4°C below the upper lethal limit. The low tolerance of spirochetes for high temperatures is well known and may explain in part the restricted distribution of B. burgdorferi to temperate latitudes and its absence in the tropics, where infected ticks may be exposed to high temperatures detrimental to spirochete survival. Interestingly, the thermal sensitivity of T. palladium was exploited in the early 1900s prior to the discovery of penicillin by using fever therapy with malaria or relapsing fever infection to treat patients with general paresis (31). "
[37C = 98.6F, 39C=102F, 40 = 104F, 41 = 106F]
In other words Lyme bacteria all die at a temperature of 106 Fahrenheit
for 24 hours. It's a higher temp than what kills Syphilis. Unfortunately
that could kill you too. But they do have a hard time at 102F, and at
103 or 104. One of the problems with heat therapy is some tissues in your
body might be a bit cooler and the bacteria there might survive. It can
be dangerous therapy if it's not done in moderation. Temperature treatment
for spirochetal illnesses has it's roots in the old Malaria therapy for
Syphilis. The old Malaria therapy had a death rate of 1/20, and a successful
complete remission rate of 50%. Some people just soak in very hot baths
in addition to other therapies and swear by it.
ICHT is an experimental treatment which involves raising the body temperature to kill spirochetes. Temperature treatment for spirochetal illnesses has it's roots in the old Malaria therapy for Syphilis. The old Malaria therapy had a death rate of 1/20, and a successful complete remission rate of 50%.
ICHT uses drugs which raise the intercellular temperature (from the inside out) and sometimes uses external heat as well.
For much more information on this treatment and the controversies surrounding it, Visit Lyme treatment http://www.lymetreatment.com/Index.html This is an excellent non-biased review, with both positive and negative comments.
One of the drugs which was used for internal heat is "Usnic acid", derived from the herb "Usnea". It seems it may no longer be in use. The drug currently in use in most ICHT clinics is probably DNP, not Usnic acid. This may change as DNP itself is controversial.
"DNP
The next issue to be addressed is DNP itself. It is true that DNP is just one of 50 possible uncoupler agents that can be used in ICHT therapy. However, as a stand-alone compound this is a particularly nasty agent.
According to a Princeton University chemistry website, DNP is a yellow solid with no smell. It is used in making dyes, wood preservatives, explosives, insect control substances, and as a photographic developer.
DNP is highly toxic to humans. A lethal oral dose can be as little as 10-14 mg per kilogram (a kilogram is 2.2 pounds) of body mass. "
No research has been done on Sweat lodges or Saunas, however it stands to reason they would have some effect on spirochetes. Especially when used with periodic consistency. A Sweat Lodge is an integral part of many Native American religions. Saunas are a common practice of Finnish and other Northern Europeans. See heat.
Online Medical Dictionaries, Drug References,
Drug Interactions
Medical Dictionaries;
http://cancerweb.ncl.ac.uk/omd/
http://www.nlm.nih.gov/medlineplus/dictionaries.html
Links to tables of antibiotic properties and families, and drug references;
http://www.intmed.mcw.edu/drug/antibiotics.html
http://health.yahoo.com/health/drugs/index.html Yahoo drug references
Mathew's Lyme Disease Information
Info on Roxithromycine
This is included separately as it is not approved for use in the US and it's hard to find stuff on it in English. It is a common antibiotic which is used for Lyme in Europe and Asia and it's safety has been tested in France. In Eastern Europe it was commonly used in combination with Bactrim for lyme. It is possible there are many co-infections of Staph there, which Bactrim is effective against. It is the only macroloid antibiotic which crosses the blood brain barrier. (See notes on Gasser protocol). But many in North America haven't had luck with it. You may be able to get through the red tape on it's use through specialized AIDs clinics or advocate groups, some of whom were pushing for it's use in the US, and I believe some are able to import it for their patients' use. Some people skipped that and just ordered it online.
Free Meds programs
http://www.needymeds.com/ NeedyMeds is the place to learn about patient assistance programs and other programs designed to help those who can't afford their medicines. NeedyMeds is not a program. It's an information source.
Info on Drug interactions
http://www.associazionepositivo.org/Vecchi/drugsinteraction.htm
grapefruit http://www.globalrph.com/gfruit.htm
See also- Herbs (interactions)
