May 222016
 
Erythema Migrans on the arm of my son

Erythema Migrans on the arm of my son

We have a stream near our house and my son likes to hike there. He also recently tested out a new tent in our front yard. Apparently, in one of those places he was bitten by a tick. I think one of our neighbors voodoo cursed him because they hated the tent being up badly. 🙂

Upon seeing the rash we “bundled him up” and headed to the doctor for antibiotics. They were more than happy to prescribe them since even the IDSA recommends that course. We left with 3 weeks of twice a day doxycycline. They also ran the ELISA and Western blot tests, both came back negative.

With my son getting Lyme it reconfirmed what I already knew; the lyme labs suck. His should have been a clear positive for either test, and both failed. What chance do you have if you make it to late stage Lyme?

I am pleased to report that my son completed the antibiotics and the rash is long gone. I am very thankful he got the rash. I do not expect him to have any more problems.

Mar 262012
 

I while ago I got a link to sign a petition against the IDSA lyme protocols. At the time I did not have the time and eventually it just got forgotten. I think in the end it got forgotten because the IDSA protocols never impacted my treatment. I disagree with them, but you tend to be more passionate about things that personally affect you. I was reading Lymelight’s blog and it reminded me of the forgotten petition so I made haste to complete it before I forgot again. To make up for my late submission I submitted another one for Eriksgirl. My other confession is that I submitted another petition for the astrolgist. I obviously had his email address, but I ended up with his home address when he threatened that he could find my personal info whether I gave it to him or not, and to quit being paranoid. To be on the up and up I did not think he wanted an email subscription of updates so I opted him out of that. Deep down Ron can be proud of signing this petition via proxy. 😉

Jun 022010
 

Eriksgirl went for a MRI today. Over the phone they had told her no breastfeeding for 48 hours because of the contrast. She thought this sounded wrong based on her experience working at an imaging facility. The American College of Radiology actually found that breast feeding is safe with contrast. Additionally, Hale’s Medications and Mothers Milk says the same thing.

At the appointment Eriksgirl made the “mistake” of saying she would not stop nursing at check-in. This resulted in a 30 minuted confrontation with the radiologist about nursing. Eriksgirl brought up his College’s position to which he replied he did not care what they thought. Eriksgril ended the argument by saying she would use formula. She decided that would get her in the tube and she was not there to argue about drugs. It worked.

All of the Colleges have some bad policies (ACOG, AAP, IDSA, etc) but as a rule doctors should probably follow their colleges best practices. The ACR had a reasoned position. Did the radiologist have a reasoned position (if so he certainly never shared it), or was it more of that is what he had always done. I think we have too much of a “that is how we have always done it” mindset in medicine, and maybe that is why Colleges have bad policies that are too slow changing (*cough* IDSA *cough*).

May 212010
 

Sometimes I ponder why has the cause of Multiple Sclerosis not been identified. Why is is Lyme treatment filled with so much controversy. In the end we are either in a very dark period or we are getting dumber. In my casual surfing I came across this paraphrase of a larger article:

Scientists at this year’s XXVIIth General Assembly of the International Astronomical Union in Rio de Janeiro, Brazil agree that we do not yet know how ubiquitous or how fragile life is, but that: ‘The Earth’s period of habitability is nearly over on a cosmological timescale. In a half to one billion years the Sun will start to be too luminous and warm for water to exist in liquid form on Earth, leading to a runaway greenhouse effect in less than 2 billion years.’ Other surprising claims from this conference: that the Sun may not be the ideal kind of star to nurture life, and that the Earth may not be the ideal size.

Their numerous propositions defy the scientific principle because they are all untestable. Regardless, a bunch a highly accredited people got together and came up with this series of propositions that really just boils down to speculation. Maybe speculation, guessing, bias, rhetoric, etc. is the new science.

Of course this ties in very nicely with Lyme. Lyme, as complex as it is, can be is something that you can study and test. Fortunately there are people that do study Lyme. How is it then that so many people got to testify at the IDSA hearing about their untested personal beliefs. I’ll be fair a personal account should not have been there either. In the end I guess none of it mattered.

Feb 042010
 

While the IDSA never had a significant impact over my treatment of Lyme I know their protocols do negatively impact a lot a people with Lyme. Many were optimistic that the legal battle with the IDSA would change things; I have never been that optimistic. (You can read about IDSA’s recent antics here.) You almost have to applaud their voting technique as almost malicious genius. In the minimum the amount of effort IDSA is willing to exert to maintain the status quo is excessive. Reviewing the new information and following the protocol has to be easier. With this development I am even less inclined to think any progress will be made with the IDSA Lyme protocol in the near term.

Reviewing an old post it reminded me of all the talk revolving around crazy at the IDSA hearing. There must be a little irony now that the IDSA seems to be forcefully rejecting new information for review.

Aug 012009
 

As I read through the CALDA updates on the IDSA hearing it was striking how the drama and arguments are still the same old stuff. I hope that IDSA protocols improve, but I am less than optimistic.

What I thought was most interesting was even in this hearing there had to be an appeal to crazy. Usually you hear hypochondria but Dr. Arthur Weinstein’s appeal to somatization syndrome was new. Certainly one of the poison pills in that diagnosis is that the problems had to occur before the age of 30. Many Lyme suffers are not in that category. The bigger issue with the medical profession in general, and I have seen repeatedly and separate from Lyme, MS, and me, is that doctors dismiss what they do not understand. The doctors lack of comprehension is especially troubling when it turns into an accusation of crazy. I think it is easy to read maliciousness into being called crazy, but I think this is prime example of where Hanlon’s Razor should be applied. Sadly the level of ignorance and stupidity abounded in that hearing. How can you fix willful stupidity and ignorance?

Eriksgirl thought that the IDSA should be infected with Lyme. If Lyme can be treated like they believe a little Doxycline will cure them. It would be interesting to see how many continue to eat their own dog food if they got Lyme. Maybe someone should have been like Bill Gates and his mosquitoes and brought a jar of ticks to the meeting.