I thought the same at the beginning. I didn’t know that Lyme is influenced by hormones. But I was very wrong based on my readings and what all my doctors told me is that Lyme get worse around women’'s menstrual cycle. Also after childbirth is horrible time for women w Lyme
Hillsta - I shared that with my UK friends thank you
— Begin quote from “hillsta”
Who has an appointment with DR S next? I wonder if we can mention it to him and see what he says
— End quote
Any Doctor that is treating you for something other than Lyme disease & coinfections, is not the one to talk to about it. They should have see it long before you told then of it.
— Begin quote from “scott”
Hi Lisa,
Wow, this is really something you can work with (I hope as I don’t know the treatment for this) to end this nightmare. Glad you’re no longer being side tracked by the bio identical hormone thing. That wasn’t a back lash BTW, but a reality check and now it looks like you’re onto something that is worth exploring in full.
What’s the next step? What sort of statistics are there on these tests showing false positives? Can that happen? Do you know of others who have shared your symptoms, were treated for Lyme and recovered?
— End quote
Lyme Disease & all Coinfections is a Clinical Diagnosis. All the tests are flawed.
— Begin quote from “leannefr”
Funny, I just watched the documentary “Under your skin” then saw your post today. It’s really interesting. I am a veterinarian in SE Minnesota. We routinely test for lymes, ehrlichia and anaplasma in dogs. About 1/3 of dogs test positive for antibodies, many have coinfections. Not just hunting dogs but also inside dogs with lower risk of exposure. In endemic areas up to 50% of deer ticks carry lymes. Probably 10-15% of dogs develop fever and polyarthritis which responds to a month of doxycycline. A small percentage of dogs get an immune mediated kidney disease that is lethal and non responsive to antibiotics. Others develop bleeding abnormalities. Erhlichia can cause multi organ failure and severe secondary infections. We don’t see a chronic form of lymes but I am amazed how many owners have had lymes or know someone who has been devastated by lymes. We have several vaccines available that work well and good tests available for dogs. I don’t know why human medicine is so far behind. I had to ask my doctor for a tick panel. Which would be the first thing I would investigate if a dog presented with my symptoms. Right now I am having a really hard time trusting the human medical system. I have been so disappointed how they have handled my illness. I cannot believe how quickly doctors want to right off a problem as being “all in your head” just because they don’t have answers. I was told by a neurologist that it is just stress and there is nothing g more he can do for me. Meanwhile I am in the process of losing my veterinary practice because I am too sick to work. Lisa, I hope you have found a doctor that is willing to go to bat for you and not give up until you are well. That is what I am hoping for 
Best of luck and keep us posted on your progress.
LeAnne
— End quote
I have run into many vets and doctors that get infected with Lyme, Bartonella, Babesia and more…
Igenex labs is a good place to start…
A reasonable neurologist should be able to workout what’s happening most of the time through differential diagnosis. Either that it fits the criteria or is a probable case (or not). This from the Handbook of Clinical Neurology:
The differential diagnosis does not primarily cover only headache syndromes but also different vestibular disorders. When recurrent vertigo attacks are associated with headache and other migrainous symptoms in a patient with known migraine and normal hearing, the diagnosis is easy.
In many patients, however, other causes must be ruled out, namely Meniere’s disease and episodic ataxia type 2, both of which can mimic migraine-vertigo (Strupp et al., 2007), vestibular paroxysmia (caused by neurovascular cross-compression of the eighth nerve: Brandt and Dieterich, 1994), and non-vestibular dizziness in migraine. Furthermore, as in typical aura without headache (ICHD-II 1.2.3), a distinction from more serious diagnoses such as transient ischemic attack has to be made (Rathore et al., 2002; Kerber et al., 2006; Murray et al., 2007). In a large retrospective study it was shown that only 3% of “dizzy patients” presenting to an emergency department were diagnosed to have stroke (Kerber et al., 2006). Transient pure vertigo was even more rarely caused by cerebrovascular ischemia: only 0.7% (9 of 1,297) of those with isolated dizziness/vertigo had had a stroke/transi- ent ischemic attack (Kerber et al., 2006).
— Begin quote from “dolfnlvr”
leannefr,
With Lyme testing, the normal blood work is often termed “negative” when indeed the test is “positive.” MAVlisa said she was given a test in 2008 that showed a positive Western Blot band for line 41 and 93 and research from the 90’s illustrated pretty clearly that these two bands were definitively diagnostic. However, due to internal medical politics which are VERY messy where LYME is concerned, the CDC definition for “positive” requires at least four bands to be positive for a diagnosis to be deemed positive. REGARDLESS of the band specificity.
I work in the world of science, and have many microbiologists who are close friends–and we live on the east coast of the United States (aka LYME CENTRAL). The veterenary world acknowledges the prolific rates of Lyme disease in the area, and scientists/biologists tend to find the research that has been done and used to make policy choices is FLAWED. However, insurance companies are happy with the current policies, and the researchers who have tilted the scales in the current direction have some serious biases that keep them from seeing the “light.”
It is a VERY long story. . . just as long, complicated and scarey as the MAV story. BOTH are strange, relatively misunderstood, and “hands-off” diagnoses for the average doctor. Thank GOD we have doctors out there who are able and willing to see past politics and text books.
— End quote
I like this post… You are very close to the truth… Thumbs up!
The Truth is I suffered for more than 16 years & no one could tell me what was wrong. No tests helped me and I remained sick & suffering… The whole time it was lyme and coinfections. The truth is hidden because we are a cash cow. I will post more on this as I answer more questions on this thread.
Hi Dave – can you tell us your history please. Why do you feel like you were a cash cow?
Thanks
— Begin quote from “dolfnlvr”
Sadly, but I have to add this, for as difficult as one may think it is to get an MAV diagnosis and treatment, it is MUCH harder to do so for LYME Disease. Since Lyme requires long term antibiotics, doctors who choose to treat Lyme based on symptomology and non CDC approved test results can be targeted for legal action. Therefore, VERY FEW DOCTORS ARE WILLING TO TAKE THE CHANCE.
Since MAV is not treated with antibiotics and the treatment can only affect the individual patient (as opposed to increasing the liklihood of mutated bacterial populations) there is less fervent argument against treating us…
I am actually GLAD that my diagnosis of Lyme didn’t seem to be accurate and that the MAV seems to be the right road. I’ve had a much easier time of getting treatment for the MAV then the LYME–for that I had to travel to a doctor over three hours away. And, (to illustrate that Lyme doctors are NOT quacks who just want your money) she was the one who informed me that the tests were inconclusive and that after a short regimine of abx if there were NO signs of changes in my symptoms then she suspected MAV and would recommend that I see a specialist who managed atypical migraine activity.
— End quote
The CDC sent out a letter to each and every doctor in the Us after the IDSA lost in court, stating that lyme disease is a clinical diagnosis. CDC only collects data, they do not govern…
Also if you are not treating with a real LLMD = lyme literate medical doctor, the chances of your antibiotics being high enough is not there. “You need high Bacterial Doses in combo” If not no change will occur, more over some never herx at all, some feel better at the start of abx= antibiotics & some get more symptoms while others get less.
Here what this video. ~7~ SEVEN LYME FACTS THAT COULD HAVE SAVED ME!!! - YouTube)
— Begin quote from “scott”
Hi Dave – can you tell us your history please. Why do you feel like you were a cash cow?
Thanks
— End quote
Sure thing Scott. Give me a sec and I’ll sare my story with you in short…
BTW, nice to meet you and thank for the add…
Hey folks,
I’ve been chatting with a neurologist from the US northeast about this and this was his take on Lyme disease. Note the disease is “endemic” and not epidemic.
Endemic: In epidemiology, an infection is said to be endemic in a population when that infection is maintained in the population without the need for external inputs. For example, chickenpox is endemic (steady state) in the UK, but malaria is not. Every year, there are a few cases of malaria acquired in the UK, but these do not lead to sustained transmission in the population due to the lack of a suitable vector (mosquitoes of the genus Anopheles).
“Lyme disease is “endemic” in the northeast USA. In its simplest form, it causes a rash and migratory joint and muscle pains. In untreated or under treated cases it can invade the central nervous system (like tertiary syphilis) and set up a host of mysterious neuro symptoms that can masquerade as other conditions. Balance symptoms and/or vertigo would be extremely rare.
I do not screen for this condition in my dizzy patients. If we are concerned about it at all, I send them to an infectious disease consultant for evaluation. If they are fully treated for neuro-Lyme and still have vestibular disturbance, we look for an alternative explanation.”
S
— Begin quote from “scott”
Hey folks,
I’ve been chatting with a neurologist from the US northeast about this and this was his take on Lyme disease. Note the disease is “endemic” and not epidemic.
Endemic: In epidemiology, an infection is said to be endemic in a population when that infection is maintained in the population without the need for external inputs. For example, chickenpox is endemic (steady state) in the UK, but malaria is not. Every year, there are a few cases of malaria acquired in the UK, but these do not lead to sustained transmission in the population due to the lack of a suitable vector (mosquitoes of the genus Anopheles).
“Lyme disease is “endemic” in the northeast USA. In its simplest form, it causes a rash and migratory joint and muscle pains. In untreated or under treated cases it can invade the central nervous system (like tertiary syphilis) and set up a host of mysterious neuro symptoms that can masquerade as other conditions. Balance symptoms and/or vertigo would be extremely rare.
I do not screen for this condition in my dizzy patients. If we are concerned about it at all, I send them to an infectious disease consultant for evaluation. If they are fully treated for neuro-Lyme and still have vestibular disturbance, we look for an alternative explanation.”
S
— End quote
To put it bluntly, this doctor is a lier! And the IDSA, well you be the judge.
ct.gov/ag/cwp/view.asp?a=2795&q=414284
ct.gov/ag/cwp/view.asp?a=2795&q=414284
Dr. Joe Jemsek "Speaks the Truth" Speech - YouTube)
It’s a world wide pandemic brother!
Dave,
It sounds like you’ve had a bad and possibly painful experience and I’m sorry for that. Chronic diseases like vestibular migraine often draw in a lot of confusion for people because it is, at the end of the day, a dx of exclusion and there is no cure for migraine which leaves it wide open for kooks and cranks to prey on. You don’t have to look far to find junk science and bad information on the web. Nonetheless we all have a very good grip on what is going on here through careful examination of the evidence, expert opinion and case studies – us!
This particular neurologist I have discussions with is a very very good man and has gone out of his way to support our community and to make a real difference for his patients above and beyond this forum. To call him a liar is just not on. And to especially have it come from a new member for whom we know nothing about is inappropriate.
Look forward to your story and please read the Mvertigo Constitution.
Scott
But there is a cure and it’s not all about lyme, for myself there was a cure… When we treated Bartonella and babesia, my migaines got less and less until they were no longer with me. I have My life back & so could you. I share my story of hope for others to seek the truth.
My story will be posted soon…
I’m giving you more to look at first.
I have been trying to divine a reason why the various medical specialty organizations (Infectious Disease, Neurology and now, Dermatology) have been racing to perpetrate a preponderance of guidelines that denounce appropriate, or at least reasonable, diagnosis and treatment for one particular medical condition. I am aware of no parallel in any other illness. It is worthwhile to state that the surprising orgasm of guidelines follows no new research findings to account for the timing of their release.
The reason for issuing guidelines was ostensibly to avert the danger of long term antibiotic treatment. I found this particularly confounding with regard to Dermatologists, who prescribe minocycline for years on end to treat, or sometimes prevent, acne, a far less debilitating condition than chronic Lyme disease. Also, recently humorously stated, long term antibiotic treatment has resulted in some of the healthiest cows and chickens the world has ever seen.
Logically, either the NEJM physicians are all absolutely correct and the entire Lyme community is as misguided as they attest, and our doctors as mischievous or malevolent as they allege, or they themselves are either grossly mistaken or have some motive for their savage attacks on fellow physicians, and by extension, a large and growing population of suffering patients.
Since they are not fools and they have access to the same database that we do, including their own previous studies attesting to the persistence of Lyme following treatment, they must have some motive. At first, I examined the disclosures and recognized some conflict of interest that might offer a rationale for a few in the NEJM group, but that did not account for the other professional groups joining in the fray, all in such a well timed and coordinated fashion.
This afternoon, I discussed these events with a colleague (my wife, Jane Kelman, M.D.). If we are correct that Lyme has been misdiagnosed and under treated, and disability created wholesale through this negligence, and this becomes an accepted public reality, that is, the reality that we already know to be true, the inevitable medical malpractice suits will destroy those physicians responsible, represented by the three major medical specialties who have been the first contact for most patients with Lyme disease. Those are the very specialties now circling the wagons in a pre-emptive attack to preserve what they recognize is a massive, catastrophic error in analysis and judgment.
While there may have been other, early motivations (the profit from vaccine development, legal testimony fees and so on), there is now one single, unifying, global reason to refute chronic Lyme: To protect themselves from the repercussions that will follow if, or rather when, the preponderance of Lyme cases and disseminated Lyme information reaches critical mass. They will try to argue standard of care by hiding behind their own guidelines and those of their closely related co-specialists. While they have different specialties, they have one common motive. This is defensive and possibly illegal manipulation of the first degree and it is the only explanation that makes sense of the whole.
The current mania to produce guidelines has been driven by the recent explosion in Lyme information hitting every news media, with the recent publicity slanted invariably toward mentioning a controversy rather than merely stating the anti-Lyme position, as had been the case until recently. Major TV stations are picking up on the story, and now, with the Connecticut attorney general adding credibility, and President Bush’s treatment adding visibility, the anti-Lyme docs are in an understandable panic. This is beginning to look like their perfect storm, not ours.
The attorney general of Connecticut is at least half right. He is focused on the antitrust implications, but, if he is not already, will become aware of the motive behind their conspiracy: Besides restraint of trade, the effect on many infectious disease, neurological and dermatological physicians will be massive lawsuits for negligence involving failure to properly diagnose and treat, with readily provable losses of health and income directly attributable to medical malpractice.
I am elated by recent events. If the anti-Lyme doctors had simply muddled along, permitting a situation where some Lyme patients got treatment, some didn’t, and things were confused, they might have survived longer. However, probably a result of overactive egos, maybe the new preeminence of certain individuals, they decided to go in for the kill, staging the current guideline ploy to finish us off once and for all, literally killing us off by providing permission for insurance companies to deny treatment. This move, paradoxically, will prove to be their undoing, not ours, as it provides a prima facie case for conspiracy.
We have only to keep telling the truth: That Dr. Feder et al make their case by selectively employing particular studies, avoiding others which refute their position, even ignoring their own past studies and pronouncements. Their duplicity is transparent and the heat is building.
Richard Brand, M.D.
120 N. Main St
New City, NY 10956
More on my illness that held me down…
Disease caused by insect bites can be transmitted to children at birth
Published: Monday, May 3, 2010 - 14:14 in Health & Medicine
A North Carolina State University researcher has discovered that bacteria transmitted by fleas–and potentially ticks–can be passed to human babies by the mother, causing chronic infections and raising the possibility of bacterially induced birth defects. Dr. Ed Breitschwerdt, professor of internal medicine in the Department of Clinical Sciences, is among the world’s leading experts on Bartonella, a bacteria that is maintained in nature by fleas, ticks and other biting insects, but which can be transmitted by infected cats and dogs as well. The most commonly known Bartonella-related illness is cat scratch disease, caused by B. henselae, a strain of Bartonella that can be carried in a cat’s blood for months to years. Cat scratch disease was thought to be a self-limiting, or “one-time” infection; however, Breitschwerdt’s previous work discovered cases of children and adults with chronic, blood-borne Bartonella infections–from strains of the bacteria that are most often transmitted to cats (B. henselae) and dogs (B. vinsonii subsp. berkhoffii) by fleas and other insects.
In his most recent case study, Breitschwerdt’s research group tested blood and tissue samples taken over a period of years from a mother ( see today on g-news), father and son who had suffered chronic illnesses for over a decade. Autopsy samples from their daughter–the son’s twin who died shortly after birth–contained DNA evidence of B. henselae and B. vinsonii subsp. berkhoffi infection, which was also found in the other members of the family.
Both parents had suffered recurring neurological symptoms including headaches and memory loss, as well as shortness of breath, muscle weakness and fatigue before the children were born. In addition, their 10-year-old son was chronically ill from birth and their daughter died due to a heart defect at nine days of age.
Results of the parents’ medical histories and the microbiological tests indicated that the parents had been exposed to Bartonella prior to the birth of the twins, and finding the same bacteria in both children, one shortly after birth and the other 10 years later, indicates that they may have become infected while in utero.
Breitschwerdt’s research appears online in the April 14 Journal of Clinical Microbiology.
“This is yet more evidence that Bartonella bacteria cause chronic intravascular infections in people with otherwise normal immune systems, infections that can span a decade or more,” Breitschwerdt says. “Also this new evidence supports the potential of trans-placental infection and raises the possibility that maternal infection with these bacteria might also cause birth defects.”
The Department of Clinical Sciences is part of NC State’s College of Veterinary Medicine. Dr. Breitschwerdt is also an adjunct professor of medicine at Duke University Medical Center.
Interesting read here from the Chicago Tribune.
[size=130]Chronic Lyme disease: A dubious diagnosis[/size]
There’s little good evidence that chronic Lyme disease exists. Yet doctors are treating it with drugs that put patients and the public at risk.
In this world, skeptics are vilified as part of a vast conspiracy involving tainted government agencies, drug companies, the media and conventional physicians. Scientific studies are cited but are invariably of poor quality or misinterpreted. Patients are directed to small specialty labs offering tests that can be misleading. And advocacy groups are aggressive and sophisticated about spreading their messages, raising money and influencing state and federal lawmakers.
There is no better example than the world of chronic Lyme, a disease that might not exist and one for which the most common treatment, months or years of antibiotic use, poses a threat to us all by sapping the power of those drugs to fight disease.
— Begin quote from ____
The reason for issuing guidelines was ostensibly to avert the danger of long term antibiotic treatment. I found this particularly confounding with regard to Dermatologists, who prescribe minocycline for years on end to treat, or sometimes prevent, acne, a far less debilitating condition than chronic Lyme disease. Also, recently humorously stated, long term antibiotic treatment has resulted in some of the healthiest cows and chickens the world has ever seen.
— End quote
Seriously this is a ridiculous statement. Antibiotic overuse is a MAJOR problem. The World Health Organization recently declared antibiotic resistance “one of the greatest threats to human health today”. The organisation I work for has launched a national campaign to increase awareness to stop their misuse. Use of antibiotics for as little as 10 weeks (still over twice the recommended time for treatment) can allow drug‐resistant bacteria to develop, infect, and kill a patient. People who believe they have a chronic infection often take antibiotics for a long period of time in order to fight the infection; there is no evidence to show that this helps with the symptoms and plenty of evidence that it is harmful, both to the patient and to the general population (there are numerous references for this).
Interesting story about the guidelines for treatment too: In 2008, Connecticut attorney general Richard Blumenthal launched an anti‐trust investigation of the IDSA for not citing (non‐existent) evidence about chronic Lyme disease in its 2006 guidelines. Blumenthal’s office ordered the IDSA to create a new panel with an independent head to evaluate the original guidelines. In 2010, the new panel unanimously upheld the 2006 guidelines.
Dave – it all smacks of the same type of conspiracy theorising and fear-mongering we’ve read so many times about a whole host of other problems – such as vaccines causing autism.
S
Theres no conspiracy on my end, I’m living proof that the IDSA, Yale U and scull and bones ar the conspirators…
I’m trying to tell you about more than just Lyme Disease. What I’m telling you is there is more behind the word lyme disease, try this on for size; bartonella, babesia, parasites, mycoplasma, Rocky Mountain spotted fever, erlichia, anaplasma, cat scratch fever and more…
I no longer have the bartonella & babesia debilitating headaches… If you target lyme and you have bartonella or babesia you will not feel any change.
Theres a big difference in the labs you use, so can you regain your life…
http://www.galaxydx.com/web/pdfs/Whatisbartonella.pdf
https://www.youtube.com/watch?v=OrLJLgoNgA4&feature=player_embedded
https://www.youtube.com/watch?v=_aqOEqqUcTc
https://www.youtube.com/watch?v=Shw5UGQvbLI
Most of us who have bacterial infections have more than one.
https://www.youtube.com/watch?v=-aHRMjVHggI&feature=player_embedded
So let me get this straight Dave.
- The US government created Lyme disease by doing experimental research on ticks injecting them with diseases on Plum Island (northeast US)
- The Plum Island experiments was born out of the United States bringing over Nazi scientists - Operation Paperclip. One of those nazis, Erich Traub, is regarded as the “godfather” of Plum Island
- The US government is covering up Lyme disease (a conspiracy) because they are the ones who created it for biological warfare under the expertise of nazis
- Because they created this monster they are denying proper treatment to Americans
Is that what you believe as per one of the links you supplied?
Dave,
This is a MIGRAINE forum. Not a platform for Lyme conspiracy manifestos.
I didn’t wade through your voluminous posts as life is too short already. There may well be a nugget of truth buried beneath your paranoia about the combined efforts of the media, government, insurance companies and ‘Medico-industrial complex’ (whatever that is) to cover up the Lyme pandemic sweeping the world (where do they find the time to get together and do this plotting??), but you’ve obscured it under all this nonsense.
Turning up on this forum with no introduction, with barely a passing mention of migraine, screams trolling.
my head is spinning from these posts. The last thing I want to do is debate. Please just know I am coming from a good place when I bring up the possibility of Lyme for others. I do know that it is indeed an epidemic (sadly) and testing is extremely inaccurate. All the information is out there to read and make your own decisions. I respect others who might not believe that this is the case. I am not going to engage in debates. I will periodically check in, of course, and if anyone wants to find out more about Lyme, please PM me. I truly want to help.