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Saturday, July 19, 2008

Latent Lyme disease and exercise??? a link?

As I've stated on this site, my wife and I had Lyme, Babeosis and Erlichosis. We spent about 50 grand, two years and a lot of antibiotics to get back on our feet. I've been relatively OK.

HOWEVER, I started a new project around the house. My 20,000 gallon in ground pool is surrounded by patio blocks that aren't even close to level, in fact, they look more like the Tetons. Also, I'm getting water intrusion around the coping that is wrecking the bond beam. The quotes we got were about 15 grand or so to redo the deck. I figured that since I don't belong to a gym, it might be a good thing to get some manual labor in. My 13 year old son and I have been removing blocks, knocking off the mortar, regrading, hand tamping and resetting the stones. The results are looking great.

BUT - the other day, I came down with a 24 hour 'flu'. Part of it might be that the window fan was blowing on me. But I began to think. It seems that every time I get into a heavy project, I end up with a 'flu' lasting anywhere from a day to a week.

THEORY - It is pretty much of a fact that lyme buries itself deep in the tissue. I suppose that what might be happening is that the exercise is forcing blood down into the muscle which is causing a herxheimer effect (an effect where the killing of lyme disease results in a fever). This makes sense in that, when I think about it, it seems that there is a correlation between hard exercise and the onset of a fever. I don't keep a journal so I don't have hard data on this.

ACTIONS - My first thought is that I probably want to keep up with the pool. and other regular hard exercise. (1) I need to get it done and (2) It seems like it might be killing the Lyme that is buried deep. Also, I think I need to get back to regular appointments with my massuese. She does deep tissue massage which seems to have a similar effect.

Anyway, I'd appreciate anyone who has had similar experiences if you would chime in here.

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Monday, July 9, 2007

Lyme Disease Pickets protest new guidelines

According to an article in the Atlantic City Press, On June 28th, Lyme Disease activists protested the proposed new guidelines for Lyme disease. These guidelines would make it much more difficult to treat patients with suspected Lyme Disease.

This is a serious disease with devastating implications for those infected and yet it seems that some are trying to minimize it and do everything they can to make treatment more difficult to obtain.

The article makes an excellent point that, if fewer cases are diagnosed due to the stricter guidelines, funding for Lyme Disease research may be cut.




Atlantic City Press Article

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Tuesday, June 12, 2007

Wisconsin AG vs. a Lyme Doctor

OK, So it was Lyme Awareness Month in Wisconsin... Great.. However, at the same time, one of the attorneys in the Wisconsin's Attorney General's office starts an attack on a doctor who was successfully treating Lyme patients... The attack on Dr. Hoffman seems fuzzy and suspicious at best.

The link to the initial article is at http://www.publichealthalert.org./text1.htm The actual story is a PDF at http://www.publichealthalert.org./Wisconsin%20Lyme%20Doctor%20Under%20Fire%20During%20Governor.pdf

To sum up the story, it appears that the good old doc is a generous, dedicated doctor. He refused to prescribe narcotics to a patient who then went to the Wisconsin AG's office. The prosecutor is a guy named Arthur Thexton who is well known for prosecuting "alternative medicines" - (more about that later). ... Thexton then started demanding records related to treating Lyme patients.. When his office started getting innundated with out of state calls, he then tried to claim that the treatment of Lyme disease was not the issue.

By the way, there is a legal defense fund for Dr. Hoffman




contributing to Dr. Hoffmann’s legal defense fund, please contact PJ
Langhoff at
info@sewill.org

Hey Wisconsin - If this is your idea of how to celebrate "lyme awareness month", why don't you just breed a couple of million infected ticks and release them??


Let's look at this a little more closely... Year after year, legislation that would allow for more aggressive treatment for Lyme dies in the Pennsylvania legislature (they did find time to give themselves and their judge friends a huge illegal pay raise though)... Why would state governments not want to provide the best treatment for people suffering from this disease? Here are a couple of thoughts...



  • The insurance companies want to control cash disbursements. Lyme can be expensive to treat, especially the long term, chronic cases
  • The insurance companies have lobbyists in the state house and often are substantial contributors to legislator's campaigns.
  • Lyme is primarily a suburban and rural issue right now. Those areas don't always have the voting clout of urban areas.
  • Those afflicted with Lyme don't yet have the political power associated with advocates for some other diseases such as aids and breast cancer.

If you do a little research into Arthur Thexton, you come up with some other interesting aspects of his career.

  • http://alkalizeforhealth.net/Lquackwatch4.htm is a scathing article about the way that Thexton's office handled the case of Stuart Suster. There are some pretty serious allegations there against Thexton backed up by the fact that Suster is now suing Thexton in Federal Court. The tone of that article can be summed up in the following quote.



Health Insurance companies, I’m sure you already know, do not want to pay for
services rendered by health professionals. If they pay at all, they pay a small
percentage of the billing. They especially don’t want to pay for new things –
and, of course, if a New York ad agency (quackbuster management) rails against
it – health insurance companies will eagerly leap into non-payment mode.


The issue is that we need a lot more research into Lyme disease. Research that is not restricted by what the insurance companies would like to see, but rather into what treatments are really effective for those people suffering from this disease. Once there is a solid set of verifiable, established evidence as to what will really work then overzealous prosecutors will not be able to intimidate those trying to provide treatment. The current environment where groups are pushing for minimal treatment for Lyme will simply cause a lot more suffering for those infected.

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Friday, June 8, 2007

The great Lyme debate...

(read the disclaimer at the bottom of the blog - Nothing here is intended as medical advice )


There is a newsday story at
http://www.newsday.com/search/ny-hscov5223177may22,0,4347013.story?page=1
about the two schools of thought regarding Lyme disease. On one hand, there are those who believe that Lyme is not being adequately diagnosed and that Doctors are not free enough to proscribe adequate courses of antibiotics. On the other hand, there are those who believe that people are being diagnosed with Lyme when they have other diseases and that too many antibiotics are being used. Which is correct?

She doesn't remember an actual tick bite or classic bull's-eye rash, but
her doctors found evidence that the common Borrelia bacteria have been in her
body
.

There are some people who believe that the lack of the bullseye rash is because the person's defenses didn't work properly. Therefore the people without the rash are more susceptible to lyme. Also, if I get a rash in the middle of my lower back, the chances of me spotting it are almost zero unless I do the exorcist head thing..


"There are a lot of people who think they have Lyme disease but don't," said Dr.
Raymond Dattwyler, an infectious disease expert


Yes, and there are a lot of doctors who diagnose Lyme as other diseases. When we first encountered Lyme, a neurologist claimed my wife had MS even though her symptoms were not consistent with MS. He scoffed when we asked about Lyme disease. Later DNA testing for Lyme showed that she did in fact have Lyme.


Fallon, an associate professor of clinical psychiatry at Columbia, said that
in the study the antibiotics worked initially on reducing pain, fatigue and
mental fog, but six months later patients were no better than those who did not
receive long-term therapy.

That, in a nutshell is one of the problems with Lyme. Many people who get it, never seem to be able to shake all of the symptoms. One theory I've heard is that the disease gets deep into the fatty tissue and some areas where blood supply is thinner. If you aren't getting blood, is it possible that the antibiotics aren't reaching the disease and reservoirs exist? Supposedly aerobic exercise helps kill the disease, perhaps because more blood is reaching more parts of the body.


. . .infectious disease doctors worry that people with all sorts of unexplained symptoms are being routed to Lyme doctors who will treat
with long-term antibiotics - despite studies that suggest those treatments don't
work. (Stony Brook neurologist Dr. Lauren Krupp and her colleagues also did a
monthlong study and found no difference between those receiving antibiotics and
those getting a placebo. The results of the study were published in
2003.)


If the study was only a month, I'd have questions about that. Again, I'm not a doctor, but I know it took a couple of months before my symptoms started to get under control. Also, our doctor was alternating antibiotics, mostly oral, but some injections (Still hurts thinking about those BIG needles). Another issue with the article is that it does not address other tick borne disease that might be present such as erlichosis and Babesis. If the latter is present, it requires a whole different course of treatment.


"The potential for harm is enormous," Boston University's Klempner
said. "Patients have died, and others have had infections" because of the
intravenous lines



IV treatment can be scary. Fortunately, as I noted earlier, our treatment was oral and injections in the posterior.


The infection doesn't take hold right away, and experts say removing the
tick soon after it is discovered is the best prevention.

That is a LOT easier said than done.. First off, the nymphs are smaller than the periods in these sentences. The tick itself is about the size of a lower case o depending on your screen. How many of us have someone check every inch of our body looking for one of these critters? Are we all doing the Yul Brynner routine and shaving our heads and other parts of our body? What about all those age spots? What about people with darker complexions? The problem here is that one bite in a place where you don't notice it can really mess up your life.

By the way, there are a number of products that allow you to remove a tick without squishing it which would inject the disease into you. That's a topic for another post.


The Lyme bacterium can also travel into the central nervous system if not
treated immediately. And this can trigger Lyme meningitis (stiff neck and
pounding headaches) and Bell's palsy (temporary paralysis of the facial
muscles).

Make no mistake, Lyme is serious stuff. We really need a lot more research to understand exactly what is happening with Lyme and other tick related diseases. We need to properly understand it and educate people as to how to prevent it.

If you have symptoms that are indicative of Lyme, you will need to make a decision as to which of the two schools of thought you believe will help cure you. That might be one of the most important decisions of your life. The problem is, there is no one right answer.....

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