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 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.

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.

May 262008
 

Meeting with the LLMD went pretty well. He said he was happy that my vision problems were not optic neuritis, but he did not go into why. I was not much in the mood for there is a better side of this then, but I need to ask at the next appointment.

We started by going over the MRI report, and discussing the visit with the neurologist. He agreed with me holding off on the Rebif, and definitely agreed with no to the steroids. He said that everyone who has come to him who previously had a MS diagnosis has gotten better. He added that there are definitely some people being treated for MS but have Lyme; but that is not really news.

The majority of the visit focused on adding IV Rocephin to the treatment mix. His ideal for the Rocephin is 2g twice a day for 4 days and then off for three days for six months. I did three months with a PICC line so six months can’t be that much worse. This will be in addition to the Minocin and the Flagyl that I am currently taking.

Since I see a doctor out of state the bigger issue was that I needed to get a local doctor to oversee my home heath, etc. My family practice doctor, the one who initially started running the tests for me, graciously agreed to oversee my local care.

To be continued …

Oct 092007
 

The long pause in posting has been due to waiting to get into a new doctor. Certainly I was irritated over a couple of the recent things that had gone on with the previous doctor, but mostly I wanted someone closer than Pennsylvania. Close is still a relative term since the new doctor is about five hours away. I knew of this doctor before traveling to PA, he came highly recommended, and many in Dallas go to him; the concern, at the time, was if I had a large herx reaction what do we do, and who do we see since the doctor is so far away (as it turns out there has never been a herx even close to that severe).

Being a first visit I treated it more as a meet and greet (see if we liked him, which we did), and did not have my long list of questions. My big concern was that he agree that I had Lyme, etc., which he did (The hassle of having Lyme and the disease being dismissed all the time makes you a little paranoid), and have a good treatment protocol. He liked the previous protocol I had been on, and he is resuming where the treatment had stopped. He also was happy with the progress that I had made it such a short duration. I’m sure I’ll have have a litany of questions for the next time, like about the symptoms I am having now; but that can wait a month. There have been changes to the medications, but I will have to post those later since the list is not in front of me, and not that interesting.

Side Note: What I never got around to posting was that I never resumed the Levaquin after David’s post (I had only taken one pill as of my post so I wasn’t that into taking the drug again). I was heavily leaning that way anyway, and maybe the comment pushed me over the edge. Regardless, the doctor does not have me on the Levaquin for the current round of treatment; wanting to focus of the Lyme and Babesia for now.

Aug 092007
 

The CD-57 went from a 63 to a 51. A 12 point hit wasn’t the vote of improvement I was hoping to see. Of course there are a number of reasons that I can think of to cause this, and it is just possible that it fluctuates during the treatment process.

  • I took a medication that didn’t cross the blood-brain barrier for a month. This could have resulted in significant Lyme growth in the brain. On the other hand I would think that Lyme wouldn’t exert that much of an immuno-suppressive force from the brain.
  • I stopped the Buhner protocol for a month because I failed to reorder the treatment. These treatments would have crossed the blood-brain barrier, and helped. I have resumed them now.
  • I read somewhere that a low CD-57 was not caused by Lyme alone, but required co-infections. It is possible that the treatment of the Babesia has caused a hit in the CD-57; and hopefully for a longer term gain.

The medical assistant that was doing the bandage change, etc. (yes, the one that took 3 hours) said that the important thing is to be feeling better (Her’s, as I recall, is a 17 after years of on and off treatment). While I am feeling better, and I agree that is important, it is most important that I get better. Of course CD-57 counts aren’t that well understood in Lyme, and their significance is therefore hard to measure; maybe I put too much of an emphasis on this one test. Regardless, this does make me want to take the Cat’s Claw to bump the numbers; plus if Lyme is suppressing this immune cell than I high could must be good for treatment.

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.