posted
I posted in the "looking for a doc" forum earlier today.
I just got back from a "regular" doctor.
As soon as he saw the rash he said it was lyme disease. No blood test.
He gave me a prescription for doxycycline. 100mg capsules. Take 2x a day for one month.
He said I didn't need to come back.
Is this the usual treatment ?
How will I know the Lyme disease is gone ?
And the prescription was only $10.00...I thought it was going to be a lot more.
Posts: 6 | From Hillsborough, New Jersey | Registered: Jun 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Typical treatment, yes, but enough? No.
Please see the treatment guidelines by Dr. B at www.ilads.org
He says 300-600 mg doxy for at least six weeks (stop four weeks after symptoms subside).
Your doctor is going by the ISDA guidelines .... they just got in trouble for anti-trust violations and have to rewrite those guidelines because they're biased. I'd go with ILADS.
Congratulations on a quick diagnosis.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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quote:Originally posted by sixgoofykids: Typical treatment, yes, but enough? No.
Ditto, ditto, ditto!!!
You got more antibiotics than MOST new Lyme patients receive.... but it may not get you "home free."
Home free would be "free of lyme FOREVER."
THAT is what you want!
Before it's too late, get a picture of that rash!! Put a ruler next to it to show the size. TAke one photo with your face in the pic .. and maybe holding a newspaper with the date visible.
Speaking of visible... go to a walk-in clinic before that rash fades and get more antibiotics. Then you'll have enough for that 200mg twice a day that you need.
Personally, I would want to take that much for at least 6-8 wks.
posted
You guys are fast with the replies...Thanks.
Now you got me worried.
It cost me $120 today to see the doctor. I don't have insurance.
Are walk-in clinics free ?
Maybe I should e-mail the doctor I saw today a link to this thread and ask him to give me enough for 400mg a day.
What about those places you can buy meds from online ? Can anyone recommend a reputable online pharmacy ?
Thanks again, Chris
Posts: 6 | From Hillsborough, New Jersey | Registered: Jun 2008
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Dawnee
Unregistered
posted
You need to demand a higher dose! He has no idea if this is even a new infection, or if you were re-infected! If this is a new infection then you need a way higher dose for at least 6 weeks. If your doctor wont prescribe it for you... seek a lyme literate doctor right away!!! In fact, seek an LLMD ANYWAYS.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I've never ordered pharmaceuticals on-line, but I think you still need a prescription.
In addition to the doxycycline, you would need something for the other forms and stages.
I will post two articles and you can also look through the Newbie section.
the new book "The Lyme Disease Solution" by Singleton is a good book.
You might also want to search Amazon for the book, "Healing Lyme" by Buhner. It's a alternative treatment but you learn a lot about lyme and coinfections.
Some LLMDs suggest supplements along with antibiotics, too. These are especially important to prevent candida, a systemic yeast infection that can occur with antibiotic use.
how your proceed with your doctor is tricky at best. If he said you don't need to return to him, he is not aware and not only probably won't appreciate your telling him how to be a doctor, but will not believe you - no matter what materials you share with him.
You must be properly evaluated for co-infections.
All this is a lot - so just relax. For now, at least you are on medicine and that's a big plus early in the game.
Is there anyway you can see a real lyme specialist, an LLMD?
You should also see of your pet shows any signs of lyme. If your pet requires meds you would get those from your vet.
ILADS at www.ilads.org for articles and presentations and to download the ILADS Treatment guidelines, as suggested above.
Best of luck to you for if this is treated aggressively up front you have an excellent chance. You might find your local support group and ask for suggestions for local doctors.
You probably need a new doctor.
Also, the very best of healthy habits are vital. Taking supplements that will help support your liver and adrenals will help your body stay strong.
From the May 2007 issue of Clinical Advisor (home page: [www.clinicaladvisor.com CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
***** As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- FULL ARTICLE AT LINK ABOVE - and broken up for easy reading below.
The Clinical Advisor is a monthly journal for nurse practitioners and physician assistants in primary care. www.clinicaladvisor.com
From the May 2007 issue of Clinical Advisor
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR'' By Virginia Savely, RN, FNP-C
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Controversy over the treatment of a particular disease is not uncommon. There are many illnesses for which there are different schools of thought and more than one treatment method--e.g., heart disease, prostate cancer, and breast cancer. When it comes to Lyme disease, a bacterial infection caused by the corkscrew-shaped spirochete ,Borrelia burgdorferi, the battle lines are particularly distinct, and the opposing viewpoints reach vitriolic proportions, to the ultimate detriment of the patients.
Lyme disease, which is most commonly acquired through the bite of an infected tick, has been reported in every state and has become the most common vectorborne disease in the United States
. In 2005, the CDC received reports of 23,305 cases, resulting in a national average of 7.9 cases for every 100,000 persons.
In the 10 states where the infection is most common, the average was 31.6 cases for every 100,000 persons. The CDC estimates that the disease is grossly underreported, probably by a factor of 10.
Meet the players ****************
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, and
the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties.
IDSA maintains that Lyme disease is relatively rare, overdiagnosed, difficult to contract, easy to diagnose through blood testing, and straightforward to treat (www.journals.uchicago.edu/CID/journal/issues/v43n9/40897/40897.html. Accessed April 6, 2007).
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, especially when treatment is delayed because of commonly encountered diagnostic difficulties (www.ilads.org /guidelines.html. Accessed April 6, 2007).
Diagnosis: Where it all begins *****************************
If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided. However, Lyme disease is often missed during its early stage when it could be most easily treated (Table 1).
Since the deer tick is no larger than the period at the end of this sentence, it is not surprising that people frequently do not realize they've been bitten. In a hairy part of the body, the tick is almost impossible to see, and even when it is noticed, it is often mistaken for a mole or scab.
When the tick latches on, it injects salivary components that anesthetize the area and decrease inflammation at the site of the bite, leaving the victim unaware of the tick's presence and allowing it to feast undisturbed.
The erythema migrans (EM) rash is commonly known as the ``bull's-eye'' rash for its characteristic shape.
The CDC maintains that a patient presenting with a bull's-eye rash does NOT require testing for Lyme disease because the rash is diagnostic in its own right.
However, the rash does not always present in the classic pattern of concentric, round, red circles. EMs can be oval in shape and/or solid in color, with shades of pink, purple, and red.
The rash may or may not contain pustules, itch, feature a dark spot in the middle, or have a denuded center. The size varies from that of a quarter to 12 in or more.
Some victims develop a diffuse rash over the entire body. EMs are commonly misdiagnosed as spider bites, cellulitis, or ringworm. To complicate matters further, as many as half the people who acquire Lyme disease from a tick bite develop NO RASH at all.
Frequently, a clinician mistakenly assumes that there are no Borrelia-carrying ticks in the patient's geographic area and fails to include the disease in the appropriate differential diagnosis. Lyme disease should be considered regardless of where a patient lives.
Ticks are carried on numerous animals, including household pets, rodents, deer, and birds, so it is little wonder that Lyme disease-transmitting ticks are not confined to a few distinct geographic areas.
A travel history should be obtained to determine whether the patient has recently traveled to a particularly Lyme-endemic area (the northeastern United States, north-central United States, and the Pacific coastal region).
Most clinicians are not familiar with the varied signs and symptoms of Lyme disease (Table 2), and this contributes to misdiagnosis (Table 3).
Children may present differently than adults, with predominant symptoms being changes in behavior and school performance.
In affected children, parents typically report mood swings, irritability, obsessive-compulsive behavior, and new-onset attention-deficit/hyperactivity disorder. Physical symptoms in children may include fatigue, frequent headaches or stomachaches, urinary symptoms, and migratory musculoskeletal pains.
When a patient presents with a collage of seemingly unrelated symptoms, there is a natural tendency to assume that a psychological component is at play. Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
The testing conundrum *********************
The CDC is aware of the insensitivity of the tests for Lyme disease and encourages clinicians to use judgment rather than a test result to make the diagnosis (www.cdc.gov/ncidod/dvbid /lyme/ld_humandisease_diagnosis.htm. Accessed April 5, 2007).
As previously mentioned, however, most clinicians do not feel confident in making this judgment call and continue to look to unreliable test results for confirmation of disease.
The Western blot test **********************
Because B. burgdorferi is an extremely difficult bacterium to culture in the lab, testing has relied on detection of antibodies to the organism. The Lyme enzyme-linked immunosorbent assay (ELISA) gives a titer of total immunoglobulin (Ig) G and M antibodies and is currently the accepted initial screen for suspected disease.
Since a screening test should have at least 90% sensitivity, the 65% sensitivity of the commercial Lyme ELISA should lead to its reconsideration as an acceptable screening tool .
The Western blot, which is commonly used as a confirmatory test for Lyme disease, is more sensitive than the ELISA.
While the CDC has published strict criteria for positivity on the Western blot to make a more exclusive cohort for epidemiologic purposes, it never intended for these criteria to be used for diagnosis. Unfortunately, the restrictive criteria omit several of the important bands on the blot that are highly sensitive markers for the presence of B. burgdorferi (see ``Interpreting the Western blot,'').
Clinicians should become acquainted with the relative sensitivity and specificity of each of the bands on the blot to make an appropriate assessment for diagnostic purposes.
A negative test based on epidemiologic criteria may be a positive test for diagnostic purposes.
Treatment dilemmas ******************
The Lyme spirochete presents a formidable adversary. With more than 1,500 gene sequences, B. burgdorferi is genetically one of the most sophisticated bacteria ever studied.
Treponema pallidum (the spirochete responsible for syphilis), for example, has 22 functioning genes whereas the Lyme disease spirochete has 132.
Borrelia burgdorferi's stealth pathology makes eradication of the disseminated organism a near impossibility.
Before the tick delivers its inoculum of spirochetes into the host, it injects a substance that inhibits the immune response, allowing the spirochete to gain a strong foothold. The spirochete itself secretes enzymes that help it to replicate and infect the host.
Once disseminated throughout the body, B. burgdorferi secludes itself and becomes difficult to detect through laboratory testing--and by the host's immune system. The bacterium may hide in its host's WBCs or cloak itself with host proteins.
Furthermore, it tends to hide in areas not usually under immune surveillance, such as scar tissue, the central nervous system, the eyes, and deep in joints and other tissues.
Phase and antigenic variations allow B. burgdorferi to change into pleomorphic forms to evade the immune system and antibiotics.
The three known forms are the spiral shape that has a cell wall, the cell-wall-deficient form known as the ``L-form'' (named not for its shape but for Joseph Lister, the scientist who first identified these types of cells), and the dormant or latent cyst form.
Encapsulating itself into the inactive cyst form enables the spirochete to hide undetected in the host for months, years, or decades until some form of immune suppression initiates a signal that it is safe for the cysts to open and the spirochetes to come forth and multiply .
Each of these forms is affected by different types of antibiotics. If an antibiotic targets the bacterium's cell wall, the spirochete will quickly morph into a cell-wall-deficient form or cyst form to evade the chemical enemy.
Borrelia burgdorferi has an in vitro replication cycle of about seven days, one of the longest of any known bacteria.
Antibiotics are most effective during bacterial replication, so the more cycles during a treatment, the better.
Since the life cycle of Streptococcus pyogenes (the bacterium that causes strep throat) is about eight hours, antibiotic treatment for a standard 10 days would cover 30 life cycles.
To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks.
Within the tick gut are hundreds of different types of pathogens. How many infect humans is unknown.
Some have been identified and are known to intensify morbidity and complicate treatment of Lyme disease.
Awareness of three coinfecting genuses in particular--Ehrlichia, Bartonella, and Babesia--has increased, and persistent infection with these organisms has been described.
Testing for and treating these coinfections has become part of the approach for clinicians who specialize in the treatment of Lyme disease.
Treatment methods *****************
IDSA guidelines recommend treating certain high-risk tick bites with a prophylactic single dose of doxycycline. This is recommended only if the tick is clearly a deer tick that was attached for 36 hours or more, the patient was in an endemic area, and if treatment can be started within 72 hours of the time the tick was removed.
Most ILADS practitioners treat any high-risk tick bite with a full month of doxycycline.
If a patient presents with EM or has a positive Lyme test, IDSA guidelines recommend treating with either doxycycline, cefuroxime, or amoxicillin for 10-21 days.
All other antibiotics are specifically not recommended. After the prescribed amount of time, treatment is discontinued whether symptoms remain or not.
However, if symptoms remain severe after the patient has been off the antibiotics for a few months, treatment with another two to four weeks can be considered. One month of IV antibiotics is recommended for severe arthritis or neurologic disease.
IDSA stresses that persistent symptoms do NOT indicate chronic infection and that prescribing long-term antibiotics to patients unresponsive to the typical two- to four-week course is USELESS and potentially harmful.
``There is no convincing biologic evidence for the existence of symptomatic chronic B. burgdorferi infection among patients after receipt of recommended treatment regimens for Lyme disease,'' the guidelines state.
``Antibiotic therapy has not proven to be useful and is not recommended for patients with chronic (six months or longer) subjective symptoms after recommended treatment regimens for Lyme disease.''
Patients who continue to suffer from persistent fatigue, pain, and cognitive disturbances after a traditional short course of antibiotics are rare, the IDSA panel claims.
These patients have developed ``post-Lyme syndrome,'' probably due to an immune system that cannot shut down after the infection is gone. This syndrome can only be treated with symptomatic care and tincture of time.
ILADS, on the other hand, promotes the idea that the Lyme spirochete is very hard to eradicate and persistent symptoms are due to ongoing infection.
This organization's approach is to treat with antibiotics as long as symptoms remain. Off-label combinations are often used based on clinical experience.
Variable response to antibiotics and occasional antibiotic resistance are thought due to the fact that there are over 100 strains of B. burgdorferi in the United States and 300 strains worldwide .
Since the Lyme spirochete is adaptive and morphs to a new cell type when under stress, clinicians who advocate aggressive, long-term treatment support giving two or three different classes of antibiotics at the same time and changing the treatment protocol every two to three months.
Higher-than-normal doses of antibiotics are given to achieve better penetration of both the tissue and the blood-brain barrier.
IM injections of long-acting penicillin or IV administration of antibiotics are recommended for patients with neurologic disease.
Precedent for the safety of long-term antibiotic use has shown that the benefits outweigh the risks.
According to ILADS, treatment is complicated by the frequent presence of coinfections, which can intensify symptoms and prolong treatment.
Therefore, antibiotics that target the coinfections are usually prescribed prior to or along with those that treat Lyme disease.
Table 4 lists treatment options used by ILADS clinicians to target the various forms of the B. burgdorferi bacterium, and Table 5 lists treatment options for the most common coinfections.
Occasionally, Jarisch-Herxheimer reactions complicate Lyme disease treatment. These symptom intensifications are due to elevated cytokines and toxins released during B. burgdorferi die-off.
Many patients notice that symptoms occur cyclically (every 21-28 days). When these intensification reactions occur, the treatment can be temporarily worse than the disease.
It is difficult to decide when to stop treating Lyme disease since there is no test that demonstrates a cure.
Because of the lack of simple culture techniques and the low sensitivity of antibody tests, a negative test does not rule out infection.
Treatment cessation is based on symptom resolution, which means that symptoms may return if the infection has not been eradicated.
The road ahead **************
Rather than shy away from the complexities and controversies of Lyme disease, clinicians should welcome the chance to learn about this condition. Lyme disease is much more prevalent than most realize. Clinician education will reduce patient suffering and hopefully put an end to the ``Lyme War.''
For a list of references used in this article, contact the editor via e-mail ([email protected]) or telephone number at link.
Ms. Savely is the owner of TBD Medical Associates in San Francisco. She is a nurse practitioner who specializes in treatment of Lyme disease and other tickborne illnesses.
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
tutu,
he loggged offf..........
try sending a pm to him; perhaps he'll see that IF he didn't mark the box for all replies to come to him .... just a friendly suggestion my friend!
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