Sep 122010
 

It is making the news that imaging contrast can be dangerous. As to the recent complaint making the news this is nothing new. I picked one of the agents, OmniScan, and a similar warning came as early as on the December 2007 label: “Acute renal failure has occurred in patients with preexisting renal insufficiency. Use the lowest necessary dose of OMNISCAN and evaluate renal function in these patients .” Must have been a slow news day.

Also, and what is not in the article, is that gadolinium is extremely toxic in its pure form. The drug companies bind gadolinium to another compound to make it safer and so it will leave your body quickly. Obviously contrast is not something you want to be taking. Looking just at OmniScan long term health effects (i.e. cancer) were not studied so it is hard to tell if it has long term health effects. Regardless, gadolinium based contrast is probably not a great drug for anyone to take. As Eriksgirl noted when I was talking to her no one is getting an MRI for fun, it is for something serious. In the end it becomes one of those necessary evils.

Sep 082010
 

After reading this article I realized that my mother is to blame for my health woes. I know the article tries to downplay that coldness does not cause future problems, but how many times can you be told to “buck up buttercup” without future repercussions. This explanation for MS seems much more plausible than iron issues. I guess Eriksgirl will have to quit saying “dry it up nancy!” to the kids, and preferably to me too. On a plus side it did not mention dads so I can continue with my walk-it-off protocol.

Sep 072010
 

Early last year I went to the LLMD and it was the same type of normal appointment. You would almost think this was a follow-up appointment to a physical; “You are doing great. Keep up the good work and I will see you back in a year” is the general tone. Before being dismissed with a pat on the head I told him we were having trouble getting pregnant with our next child, little Aria, so I asked if Lyme impacted fertility. Without answering the question, but looking at my other three children, he flippantly said something to the effect of you do not seem to be having any problems. Fool!

I had then been taking two antibiotics for at least a year. I was not happy with either and did not think they were doing anything to help me. The two antibiotics he left me on were Minocin and Flagyl. (Sure, I could have asked him to modulate the antibiotics but what am I paying him for? It worked out for the best.) A month after the appointment I did some more detailed looking at both drugs. As it turns out Minocin can impair male fertility. That would have been the kind of side-effect information I would have expected the doctor to know and share; rather than shooting off flippant comments.

At this point unhappy with my treatment, and seeing it is only causing problems, I stopped all antibiotics. We both assumed that the Minocin had done significant fertility damage and it would take months to recover my lost fertility. In reality it did not take that long and little Aria was soon on her way. In the end the Minocin almost certainly paved the way for Aria to be a girl since Y’s are supposed to be more fragile (insert favorite male joke here). The additional bonus amidst this is I got off two drugs that I definitely did not need to be taking anymore.

Maybe the doctor was keeping me on Minocin because I had to bring my kids to the appointment. Were the kids frustrating him so much that he was attempting to chemically sterilize me? Maybe this is just best to apply Hanlon’s razor.

Sep 042010
 

Based on what I have heard I expect the change to Shoemaker to be a significant change in protocol. I am used to taking antibiotics like Chiclets but I believe Shoemaker is a short-course antibiotic therapy doctor. If that is true for him than I am sure I am done with my antibiotics while under his care. That is certainly one thing to be very thankful for. I think his focus is on removing the toxins, lyme, etc., from your body.

To be fair I had been taking antibiotics and not seeing any improvement. I saw an initial significant improvement and then it just stopped. I continued with the antibiotics for a while hoping it would put me over the edge, but it never did. I quit all treatment because it was not helping. I hope this change makes some needed additional progress.

As it notes on his website he uses cholestyramine (CSM) to help remove the toxins from your body. I have taken CSM before and felt better while taking it. I stopped the CSM for a number of reasons. First, I was prescribed CSM to improve my contrast resolution, but I never saw a noticeable improvement. 😉 Secondly, CSM is somewhat vile to take. Lastly, I grew tired of having to coordinate taking it at an odd time safely distant from my antiepileptics. As a bonus the CSM constipation went away. I think you may need to live on prunes while taking CSM,

Sep 022010
 

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 🙂

 Posted by at 6:05 am
Sep 012010
 

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.

Jul 132010
 

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.

Jun 232010
 

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.

Jun 222010
 

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.

Jun 042010
 

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?