Apr 102012
 

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.

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 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 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.

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.

Aug 102009
 

As I commented on another blog a while back I have been taking fish oil for a while. Early in transiting to my current LLMD I complained about my memory. He recommend fish oil; in particularly he recommended Cooper Complete Advanced Omega-3. My LLMD liked the higher concentration in Cooper brand, etc. He did warn that it would probably take two weeks to see improvement, which in hindsight seems about right. Taking the supplement has significantly helped my memory though certainly not a cure. Eriksgirl came around to the fish oil as well and she has seen improved memory as well. To be fair part of the blame is on our diet since we do not like fish and therefore naturally do not get the Omega-3 fats in our food. As a small consolation to not eating fish we should, hopefully, not be getting much mercury in our diet. Yeah fish oil.

For me in particular, and anyone who suffers from demyelination, I think taking fish oil is a cheap, easy way to greatly improve your quality of life.

Jun 252007
 

I have gotten quite a few emails about people suspecting Lyme, and what to do. I thought I would write down my thoughts in one place. Lyme certainly looks a lot like Multiple Sclerosis, and that may be why there is an increase in incidence in the diagnosis of MS. Certainly if you live in one of the official endemic areas (Sidenote: I think it is much higher in the other areas, but because it isn’t tested for, and no one knows about it, than Lyme is not diagnosed. For instance there are rumors of very high incidence of Lyme in Texas, but there is no testing done.) for Lyme I would highly recommend that you get good tests for Lyme, for everyone else I will drop to just a “recommend” to get good tests for Lyme. Since Lyme is the great imitator it can look like a lot of other diseases/syndromes (e.g. Chronic Fatigue, arthritis, MS, ALS, etc.).

  • CD-57 test from LabCorp (aka Stricker Panel). While this is not diagnostic for Lyme there is nothing else known to lower your CD-57 killer immune cells. Of course it is also possible to have Lyme without having a low CD-57. What is known is the Lyme seems to kill off the CD-57 cell; but why is not known. Regardless, if you have a low CD-57 than you have Lyme; keep getting tested until you get a positive result.
    I have changed my thoughts on the CD-57 since this was originally written.   It may still be very valuable but to what extent I am uncertain.  I would still consider a low CD-57 indicative of Lyme.
  • Get good labwork for Lyme. Normally, doctors/labs only run the CDC criteria for an ELISA/EIA and then follow with a Western Blot if positive. Unfortunately, the ELISA/EIA is garbage, and the Western Blot isn’t always all that great either (and this is the reason I had an incorrect diagnosis for years). Also, for a lot of reasons, the normal labs do not do good testing for Lyme even with the ELISA/EIA & Western Blot. There are two good labs in the United States. The first is IgeneX, and they are almost certainly the best; unfortunately, they do not take insurance so this can easily cost you hundreds of dollars. The other good lab is MDLab. They are the lab I used, and seemed to do a good job even though the Western Blot came back negative (Side Note: they never sent me the band information, just a negative. Positive or negative make the lab send the band information so you can decide for yourself. I suspect that had I looked at the bands they would have been positive; they were just not the classic positive. I had a positive C6 Peptide so it was not necessary). Both labs will send you vials for the blood, and shipping materials for you to return the blood. You will need a doctor to order the tests and someone to draw the blood (note: they will need a centrifuge for a couple of the vials. Instructions come with the kit). For MDLab I recommend getting the Tick Borne Disease Test #420 (this includes quite a few tests for Lyme and coinfections).
  • Find a LLMD (Lyme Literate MD). The best way to find one is to join the Yahoo group Lyme-Aid and ask for a referral for your area/state. Lyme is relatively easy to treat if caught very early (i.e. at the time of, or before, the bulls-eye rash; assuming you get the rash). Lyme is very hard to treat once it enters the chronic stage, and it will require that you have a doctor that is skilled in treating the disease.
  • Critical reading is Dr. Burrascano’s paper Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses. Also a couple of Lyme Websites to familiarize yourself with Lyme.:
    International Lyme and Associated Disease Association (ILADS)
    Canadian Lyme Disease Association (CanLyme)
    Lyme Disease Association (LDA)
Apr 162007
 

The second doctor visit was a huge disappointment; especially since this one was supposed to be a “Lyme Specialist.” Also, he really enjoyed to hear himself talk, and it frequently involved sports (side note: I could care less about football, hockey, etc.) – I think he said 30-50 words for every word Eriksgirl+me said. He said that he tries to take a middle of the ground position in the “Lyme wars” (my phrase); but it is obvious he falls in the easily tested for and easily treated camp. Some tidbits from this visit:

  • The rash pictures I showed him he wrote off as just a weird rash, and that the rash is not Bartonella (WTF?!). He repeatedly said that the EM rash does not come back, even though he was repeatedly told that we thought it was Bartonella (also, I think there is a strain of Lyme that affects the skin, and the EM rash can come back). He noted on one picture that he was most interested in this one circular “rash”; since that would be more like an EM rash (ignoring the fact that I would have had Lyme for years at that point – but with no clinical history [see below] that might be a little hard). I decided to skip the detail that the “rash” he saw in that one picture was actually a compression mark from my working on the floor assembling an entertainment center.
  • He also wrote off the Bartonella rash because I tested negative for it on a blood test. He views those tests as very accurate. So Bartonella, and other co-infection, tests are accurate, but the tests for Lyme suck. Right. Furthermore, I thought I had read somewhere that the Bartonella test would be more accurate if you sent a tissue sample from the rash area; of course “more accurate” means that the test is not 100% accurate. Of course it is possible a round of antibiotics I took last year took care of the Bartonella since the rash hasn’t returned in quite a while.
  • He completely wrote off the CD-57 test. I can understand not using it as a diagnostic tool for Lyme, but he viewed it as basically worthless. His point was that until they can definitively prove nothing else lowers that value than he won’t use it for anything. I think a more balanced approach to the test would be the best policy, but what do I know.
  • He absolutely could not get over the Multiple Sclerosis diagnosis. He repeatedly commented that if you were diagnosed with MS by spinal tap and lumbar puncture (I was) than you have MS (as opposed to MRI alone). He tried explaining MS, and demylination, to me (did he really think someone treated for MS for 4 years didn’t know what the MS did to the Myelin?!); but it was clear I had a better understanding of MS than he does. Furthermore, the test run on the spinal fluid was testing for Myelin, and I do not think it would be surprising to find Myelin in the spinal fluid when there is any kind of brain infection since the infection would involve brain/spinal tissue.
  • He asked about current symptoms, but never took a clinical history. This borders on negligent. Because of this he never got the history of entering stage 2 and then stage 3/chronic Lyme. He never got an expiation of when I though I got Lyme. Lyme isn’t the flu; when treating a chronic illness I would think that clinical history is very important.
  • I can’t remember how it came up, but I asked about cell-wall-deficient form of Lyme. He said how can a cell live without a wall (true, but it is a different type of wall that exceeds my understanding of cell behavior). Eriksgirl noted about the CWD Lyme living within other cells. He completely wrote that off, and in general knew nothing about L-Form bacteria (including their existance).
  • I think he wanted to write me off completely, and he never said I had Lyme. He had to keep coming back to the C6 Peptide, but I think he wanted to write that off as a false positive too.
  • His treatment philosophy was to “let sleeping dogs lie” (He couldn’t remember the phrase, but tried several variations). I take this to mean that if there are no symptoms then there is no reason to treat. I am more of the opinion that you treat until there are no more herx reactions.
  • He listened to my chest, but never caught the Mitral Valve prolapse (I’m not sure he listened to my heart, so who knows what he was listening to). He also never checked to see if the Lyme had affected other organs (e.g. liver, spleen). Overall, it was a shoddy exam.
  • In the end I left with a 30 day prescription for 100mg Doxycycline, and if I had problems at the end of the 30 days he would give me another 30 days. I don’t know what would be done after 60 days. When talking on the phone he had said 4 months of IV antibiotics. I can only assume he thought all my problems were MS, and thus not really worth treating me.

Overall, this was like seeing the guy who graduated last in his class from medical school. Of course this doctor is the one who recommended MDLab which got my diagnosis so he isn’t all that bad. I’m sure Eriksgirl will have more to say too.