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Lyme Disease Message Board

Lyme Disease Board Index

Yes, your symptoms are aligned with how lyme can present - yes, among probably other possibilities. So you should get quality testing for lyme to rule it out (or in). Lyme is called the great imitator because it can present as about 300 different conditions/diseases, but still, it can be diagnosed with proper testing and clinical observations. Furthermore, treatment by antibiotics often results in a particular reaction called Herxheimer which is also taken as a positive diagnostic indicator... All in all, lyme is not an easy puzzle but it can be worked, and tends to be worked by those docs who find a good puzzle challenging, and as scientific minds, have personalities that don't always choose the easiest route in their careers.

You should ensure that quality testing is done. But you will need to find a decent LLMD. IGENEX is the gold standard per most LLMD's of the modern camp. You should test for borrellia of course, but also be sure to include erlichia, bartonella, and babesia, also maybe mycoplasma. The tests you should get would include looking for reversed-than-normal ratios of Vit D in blood (lyme often or typically causes D 25 reversed from D 1,25 normal ratio). Also be sure to do Western Blot per IGENEX guidelines and ONLY by IGENEX - no matter what any office or doc or lab tells you - because they have the best quality control procedures. Though Igenex was attacked a while ago, the attempt to discredit them was generally discredited itself, and they maintain various state accreditations as well. Doing the Western Blot by other labs is likely to be far less accurate (meticulous western blot procedures means higher paid lab staff, stricter lab staff and procedural oversight and management, etc.)... considering you only get one body in this life, it's worth just having the test done per Igenex guidelines or using their kit, and shipping it quickly to them per their instructions - doesn't cost much different than others, and frankly, I wouldn't care if it did cost a little bit more. Also may be good to check for high generic inflammation indicators such as SED rate (I may be wrong on that). The PCR test also. Forget about the traditional ELISA test - it's 40% or even more inaccurate and even the CDC says it's for surveillance and not diagnostic. Some docs say there's a new more accurate ELISA but I don't know about that.

Remember that people with lyme may test negative even with good western blot or other antibody-based tests, because your body's antibody response varies at various stages of the infection. This is partly because borrellia has different forms in its life cycle - a cell-walled spirochete and also a non-cell-wall, coated little ball ("CWD") form that is what hides out by hitchhiking stealthily inside your body's cells, like a piratical little rootkit on your PC.

Look for docs that recognize clinical diagnosis by front-line physicians, long-term antibiotic treatment particularly for entrenched lyme, etc. The IDSA guidelines have been pretty well discredited by rational doctors brave enough to not ignore lyme... IDSA has been discounted in terms of conflicts of interest, irrationality and very poor scientific reasoning. The Conn Attorney Gen also did investigation and rebuked them. There are private commercial conflicts within the IDSA which may explain the outdated irrational responses they have had. Lyme is a political hot potato - there is not yet enough outcry but since lyme is spreading this won't last forever, but our current generations of lyme patients will have a hard time finding LLMD's. These approaches will help dig up the docs who are LLMD's, but you still won't know how good their approaches are individually. My suggestion is to find and stick with a well-qualified internist who includes lyme in things he/she treats, but who probably doesn't treat solely lyme - treats chronic diseases as well as healthier people in an integrative way using the best of rational current scientific evidence and clinical experiences. Such a doc will treat you like your observations are valid input to be considered, will monitor your reported symptoms over time, will monitor blood chemistry/metabolism on a regular periodic basis during the year each year, and will look at your whole picture - advises patients on how to maintain healthy biochemical balances (diet, lifestyle, supplements, quality probiotics, whatever). Gives patient alternatives. May treat lyme with oral antibiotics or intravenous depending upon patient's medical situation, doctor's clinical experiences and other studies, etc. Will monitor closely how you respond to antibiotics, which you tolerate for how long, what you may be sensitive to; will try to treat you in a balanced but steady persistent manner. Keeps up with recent literature and studies and conferences nationally, maybe globally (lyme in every country now). Can be contacted in an emergency or for consultation. Is affiliated with a good hospital. Has patients who have fought lyme successfully and returned to the land of the high-achieving living. Will not paint a rosy picture or mislead you, but will encourage you to persist. Will not charge more than other specialists for consultations and periodic visits. (Though I warn you that while some antibiotics are among those in routine use, such as the --cyclines, zithromycin, etc., other some antibiotics which are highly effective may be very expensive, hopefully insurance will cover most of that.)

Such docs may keep a low profile out of necessity, so it may feel like a needle-in-haystack - but you will find them if you persist.

Lyme can present in similar patterns overall but each individual may present a bit differently. Up to date lyme diagnosis and treatment is not taught at most medical schools, nor is there sufficient economic motivators for the insurance industry and other economic supporters of research and medical education to change their tunes. As this is at teh cutting edge of medical care issues, and medical care by necessity must be conservative philosophically, that means it will take a long time and much suffering before better lyme diagnosis and treatment becomes accepted... Our first president, Washington, died of a throat infection complicated by the traditionally accepted, medically conservative modes of treatment at the time - mercury, bloodletting, no tracheotomy to allow him to breathe, etc - he had the best docs of the time attending, one of whom was on the cutting edge who shocked the other docs with suggestions to not give mercury, not let blood, and (gasp) put a little breathing tube below the infected swollen area. So he died. This is like the situation with lyme today - only the more progressive yet rational docs who are compassionate, scientific and gutsy - neither herd sheep nor wild-eyed nor pure profiteers - are the ones who are successfully treating lyme today. And it's worse than in the 1700's because today business is closely intertwined with medical science, education, insurance, legal landscape, etc. Many regular docs of various specialities steer well clear of anything lyme for fear of legal practice or insurance issues - they would rather stick to their normal business model anyway. But there are scattered internists, DO's, rheumatologists, psychiatrists, gerontologists, and pediatricians who are rational LLMDs willing to keep up with knowledge and treat suffering patients.

Lyme can present in similar patterns overall but each individual may present a bit differently - so it does not lend itself to the 5-15 minutes per patient consultation + rapid diagnosis typical medical practitioner's business model most practices are built upon. Like many of the better docs and dentists, many lyme docs do not participate with medicare and insurance due to the extreme amount of staff time to handle inevitable problems, and especially how insurance tries to limit how they may practice medicine and treatment. You can still submit claims and get reimbursed with your regular medical insurance - and there are some successful patient cases now on the books and on the internet, where treatment was attempted to be denied but it didn't hold up in court. I'm not saying all cases were won by patients - but many have been. (Someone should do a study on this.) So though that may happen it is becoming gradually less likely. Also there are laws against health discrimination in the workplace if you can still work and deliver, and there are laws prohibiting denial of insurance due to previous condition, I think .

All ticks at both adult and nymph lifestages carry tickborne diseases - typically at least 3 or more at a time, and it is uncommon for a lymie to have only one bug - coinfection is common. Bacteria transmission occurs from when they start sucking blood - not after 24 hours as some sources have said. The longer it's in, the more bacteria are shared. Also, lyme can hide out inside the body's cells for years and years and the person be asymptomatic for a long time, and up to half of people do not show symptoms (rash, fever etc.) at/around time of bite. (There are other tick borne diseases such as tularemia as well, but the ones mentioned here are the most commonly found ones.) Coinfection can be cured or remissed by antibiotic treatments. The term "Lyme" can mean one bug (borrellia) or multiple bugs ("Bb with coinfection"), depending on which doc you are talking with.

Look up and borrow, buy or otherwise find the movie "Under the Skin" - it's good and was funded by donations, not big business. It is sometimes shown at local theaters, public venues like libraries, and can be found on the internet. If you turn out to actually have lyme, have your family and friends watch it, so they don't think you are a nutty hypochondriac. Be forewarned that most media articles on lyme are misinformed and slanted - either towards the IDSA viewpoints or towards a sort of fatalistic sensationalist outlook
But you can fight off or at the very least control lyme, and have a life afterwards too.

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