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 …

  12 Responses to “Blind Spots LLMD Visit”

  1. Erik, Glad your doctor loacally decided to help you out. Ours (GP) flat turned us down!! Glad to see you are getting some news, hope treatments get things going for you as well!

  2. Well, you are hopefully on the right path now.

  3. If I send you a free copy of my Lyme disease book, http://www.defeatlyme.com , will you review it on your blog and post a link in a blog post to the website?

    Thanks

    Bryan Rosner

  4. Erik, I just discovered your blog today and find your insight very helpful. I was diagnosed with MS in Feb. I do notice your last post is in May of this year. I hope all is well with you and your family.

    June

  5. Dear one,

    Your journey saddens me because I am so sick of me and doctors and symptoms and blah, blah, I hate knowing others are going through this crap too.

    I was diagnosed definite ms Dec 2003. I suffered with copaxone, April 2008 i was correctly diagnosed with antiphospholipid syndrome. ( I had actually had a brainstem stoke in Dec 2003. ) which my idiot neuro said was ms. ( “Boy you got hit hard”) anyhow, off copaxone and so much better. Do you know of anyone who has successfully sued their doctor over a misdiagnosis of multiple sclerosis if they never met the McDonald criteria?

  6. Take care and keep warm and happy
    Have a happy Winter Solstice and a great Christmas.

    love

    Herrad

    xxxxxxxxxxxxx

  7. Hi…I found you in a strange way…long story! anyway, the pic I saw with the scratch or strethmark look that you posted a while back looks like bartonella rash or stretch marks as it is sometimes called. It can be a co-infection with lyme

  8. when will you continue this? i hope all is well… you have been away for a long while.
    take care,
    camille

  9. One year update? 🙂 Hope you and your wife and kids are doing well Erik!

  10. Hi, I am just getting started on my Lyme diagnosis and my blog. We should connect. I am also happily married and in IT. lymelifer@gmail.com or http://www.first-do-no-harm.com

  11. Thank you for your insights Eric. Haven't seen a recent entry and wonder how you are doing with lyme. It gives many of us lymies hope when we see that others are getting better. Praying for you and your family.

  12. I am wondering which doctor you are with. I have noticed that the top lyme doctors are not using Rocefin as much as the more powerful drugs like Merem, Clyndamyacin, Zithromax, Levaquin, etc. I also see that they are treating coinfections CONCURRENTLY with lyme (even if you did not test positive since they are very difficult to diagnose) because it has been determined that if you do not treat those you will not heal the lyme. And finally, they are rotating the drugs in proper combination and sequence. I am concerned that your doctor is treating you with Rocefin for 6 months. If possible I would look into another doctor if I were you. Are you familiar with GOOD LLMDs? Unfortunately there are many good intentioned LLMDs that are not good enough to take you all the way.

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