Erik's Multiple Sclerosis & Lyme Blog

I have been slow to post, as always. Aria Faith joined us a while back and is doing great.

At Birth:
9 pounds 14 ounces
21.25 inches

Now:
Much Bigger

We have decided to go with Dr. Shoemaker. At this point I am still in the pre-appointment stage. This entails collecting all of my medical records and making a time-line of my health issues. Eriksgirl has been doing a great job coordinating the records collection and is actually writing the time-line. We have a good friend that works in a medical office so we have been able to get the medical records for free so far.

We are still waiting on the records to trickle in so we can send them off for Shoemaker to review. Once he reviews the records he can assess whether he can be of service. I think his process is good. He has a good process and he hopefully will not waste my time if he does not think he can help.

Rage, rage against the dying of the light.

It has been a good rest. Unfortunately the infection did not rest. Two years into the battle with Lyme I took a break; about a year long break. I am still not excited about resuming treatment, but it is what needs to be done. I certainly do not want to be sick, but it takes energy to fight; and energy I do not think I always have. It would certainly be easier to give up and wave the white flag. Now is not the time to quit.

For now we are working on getting in with a new LLMD. Hopefully this doctor will help get me through the final hoops.

After the results of the MRI I got a call from my neurologist’s office with the results, albeit a little slow. It was his medical assistant and she gave me a brief synopsis of “it is bad.” She also added that the neurologist wants me to resume Rebif (aka whatever I was taking before). He was aware that I had quit to get treated for Lyme (he did not approve). In reality I had quit before I knew about Lyme. I had grown to hate taking Rebif, and it is not like it does not have any nasty side-effects (cancer?).

I started Rebif when I was diagnosed with MS because it was the “best” drug at the time. I was very optimistic about this treatment. As time progressed and many MRI’s later the Rebif was not working real well. My first neurologist ordered a blood test from Athena Diagnostics to see if I had developed antibodies to the interferon. No antibodies. I continued to take Rebif; in hindsight I do not know why I continued taking an expensive drug that did not work well.

The test from Athena was a waste. It provided no useful information and the test was “expensive.” The test should not have been expensive the core cost was $1000 with a $200 charge if you paid cash, but they said they would bill my insurance. The claim was rejected because they did not fill it out correctly. I called them and they said they would re-file correctly; I never heard from them again. Blue Cross would have paid 100% for that test if they had done as they said they would; they lied. I got a call from a collection agency wanting the $1000 years later. I offered the $200 cash price. They eventually gave up calling. They can get the $1000 from my cold dead hands.

Damn Rebif. Damn Athena. Damn their billing. Damn Lyme.

After refusing an MRI last year at my annual neuro check-up I decided to get one this year. I suppose it was unfortunate that I did not have an MRI last year to see if those years of antibiotics paid off with the MRI scan; I certainly feel a lot better. Too late now. I have been having some problems so I was not looking to go in and get a perfect MRI. Due to where it was done, and their policies, I could pick up a copy of the report early. Prognosis: five new lesions on the cerebral cortex. This was significantly worse than expected and a bit of a downer. Eriksgirl is very motivated to get me back on the right track again; so no doubt I will be getting back on treatments regiment soon. Contemplating a new doctor.

I had my annual neuro visit. This time I was curious about the loss visual contrast sensitivity. The last time I saw my LLMD, and he tested my contrast, he put me on two scoops of Cholestyramine. That is one nasty drug (definitely need to stir it in warm water). The CSM did not seem to make much of a difference, but did have a positive effect on other things. I dropped the CSM. I went to see an ophthalmologist at my optometrists recommendation (he did not think my vising corrected well enough). The ophthalmologist without testing my contrast sensitivity deemed it normal aging (how the old fool came to that conclusion we may never know). My neuro did not agree but offered no suggestions. He said I need to go see a neuro-ophthalmologist.

What makes the contrast problem different from every other problem is that it is constant. The Lyme/MS issues would/will come and go, but this does not change. Do I have another doctor in me?

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*).

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.

Recently I have begun to suspect that the comment Spam filter has probably captured some legitimate comments. There is no easy way to manually check, there are far too many spam messages, and the filter is working pretty well. If your message does not appear immediately then it was caught by the Spam filter and will never appear. I recommend rephrasing and re-posting. Sorry.

Now that I have discontinued all treatments this site does not do me much good. On the other hand NeedyMeds might help you with drugs costs. From what little I have looked at the site it appears to be all the manufacturer discounts per drug, what it takes to qualify, and how to apply. Since I have not used the site it is not an endorsement, but it looks good. Have fun.