That time of year for another neurologist visit. You would think it would be boring since all I am treating is my seizures. Since I have not had any seizures the medicine is working and I should just be in and out. That was not the case. I am not interested in treating MS at this time but the neurologist take is upon himself to do some neurological tests, etc., maybe so I get my moneys worth.
As I read this blog post two things struck me. First the drug is Lariam not Larium (it is not a “U” it is an “A”). I usually expect my health care providers to spell the drug names correctly. To proceed and misspell it incorrectly six times in that post is pretty bad. So much for spell check. The bigger issue is that Lariam is a nasty drug with bad side effects. There are much better choices in antimalarials, such as Malarone, for treating those types of infections. Malarone is more expensive but you should not end up in a phych ward with suicidal tendencies. I knew that the military was/is investigating Lariam and the Afgan murders. I will be interested to see how that works out, but in the minimum it should concern you that the military thinks Lariam could drive you to that point.
My concern is that those who are treating persistent Lyme are somewhat “bucking the system” and thus willing to take riskier drugs. I know you want to be better, but be careful. The drug I took and was very concerned about was Levaquin. Levaquin is effectively a black box warning drug; as with all in that class. I was very concerned about permanent damage and I do not think I was getting a good return on my investment in that class of drugs.
As always be informed about what you are taking and ask questions. Lyme doctors are already going to be living on the edge of treatment protocols so if you are seeing one be extra careful. Do not be afraid to ask questions, ask if another drug would work as well, or just say no.
aka personalized health care. Some of you may have thought you were already getting this, but the trend is to take it further. Two things about this strike me. First is “If we build it they will come” with no clearly demonstrated benefits. Two, this is genetic testing on steroids. While these slides highlights some of the major flaws of this healthcare paradigm. I think all of this technology may provide some minimal benefit, but the main interest is in those who are going to profit off of the technology. While I am the poster child for not doing this I think at the end of the day you have to take some personal responsibility for your health. Personal responsibility does not mean taking your pills it means exercising and eating well. I do not see how personalized medicine would help with Multiple Sclerosis since there are no indicators that you will get Multiple Sclerosis. How would this help me?
As I write this it reminds me that I consistently have low vitamin D levels, and I should go pickup some more vitamin D supplements. Impressively bad living this far south. Maybe I should try to see the sun occasionally.
As I posted in a comment. I am not all better but I have remained remarkably stable. As I have noted before I am much better than I was when I started and I am no longer having relapses, etc. The Lyme treatments I took made a significant difference, but I eventually did not notice any improvement. On the other hand I do still have lesions on the brain. If the lesions are caused by MS, Lyme, or something else I do not know. At this point they appear to be silent lesions and I am neglecting them for better or worse. For quite a while now I have not been taking any treatments. I, of course, still see my neurologist for treating my seizures and he still disagrees with how I am handling my Lyme/MS treatment; some things will never change. For now it will be more of the same as far as treatment.
Best wishes to all of you as you seek answers and are looking to get better!
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.
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.
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,
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.