Lyme Handbook

5 Responses to “992 My experience”

1. Throughout the nineties, I trained for months on end in the preparation for the NY and London marathons. With each successive year, my training mileage increased to a maximum of about 2000 miles/yr. And in the same token, my marathon times became worse and worse. I had logically attributed my poor run times to aging.

   During my last Marathon, I recall feeling so bad that I thought that this would be my last marathon. My legs were so heavy they felt like I was carrying logs. I never suspected that something was seriously wrong.

   Within the next two years, my legs got heavier and heavier. Eventually, I could not run at all. To make matters worse, my walking was becoming more and more impaired and my gait more spastic.

   By 1999, I visited a GP in a well respected medical group in Northern Westchester, NY. An older physician who was probably more interested in retiring than resolving my situation. He gave me a great big Bernie Madoff-like smile; told me my problem was due to aging, and sent me on my way.

   Shortly afterwards, I visited a neurologist in the same center who ran a battery of tests on me (e.g., MRI, EEG, etc). He then concluded that I absolutely positively had MS . When I suggested could it be Lyme disease, the doctor aggressively insisted that it was not and then condescendingly repeated, “well, if you don’t believe in clinical medicine…”. I was thinking to myself, “what does that really mean; how does it relate to Lyme; and why would he not entertain the possibility”.

   I lived with this prognosis for six more months slowly getting worse. In addition, my vision was getting worse; my arms and legs were becoming completely numb and I was sleeping a max of 2 hours a night. This in combination with my Lyme fog was making my job performance incredibly difficult.

   In no time at all, I was looking like death. My friends were shocked at my physical appearance. Then, one of my friends who did have chronic Lyme insisted that I visit her doctor. Of course, not having ever seen a tick, I thought she was nuts.

   Her LLD doctor put me on Ceftin immediately. I began feeling substantially better. After a positive Lyme test from Specialty Labs, I began receiving a daily IV of Rocephin and Zithromax. I slowly began to recover the sensation back in my arms and legs.

   Though my walking never recovered, all of my other Lyme symptoms did. I am grateful for the success [i.e. Lyme fog disappeared; speaking improved; full-body spasms like hitting your elbow on a table disappeared (that was torture); speaking and vision improved; hair loss stopped; elevated liver enzymes lowered].

   Being that so much had improved, I went back to the medical group to let them know of my situation and hopefully help them diagnose others. They stuck to their diagnosis which I thought was crazy. I then asked them what the odds of getting MS were. After a few moments, I was told about two in a million and those incidences were generally in Nova Scotia. When I asked about the odds of getting Lyme in this area was, I was not given an answer. Instead, I was given an awkward guilty look. This led me to believe that there was some mitigating circumatances affecting the medical group’s practice.

   In the coming years, I frequented various alternative treatments in hopes of getting my legs back. Whether it was acupuncture; chiropody; Rolfing; or Reiki, nothing helped. Even so, all of the therapists insisted that they could cure me, yet, none of them gave back my money after they failed.

   I am having some success now with an Eastern European treatment. If nothing else, I have been completely off of antibiotics for 10 months after having been on daily IVs for nine years. I will keep you posted of my developments.

   Stay aggressive, be your own advocate, educate others, keep a positive attitude.

   Have a great New Year,
   Rob

   Rob said this on December 28, 2009 at 9:48 am | Reply

2. Hi Rob

   I read with interest your story and the “blogmaster” post. Im a bit confused–you mention how disappointed you were/are with the person 20 yrs ago at some race who never told you about the horrors of Lyme. Well, firstly the meeting was at least 2 yrs before your own reported tick bite. Did you think that person should have used a crystal ball? Usually we dont “warn” people of a disease’s manifestations unless they have it.

   Besides realistically 20 yrs ago they did not even know Lyme was or could become “chronic” Heck they didnt even know there were coinfections like Bartonella or Babesia to look for!! How do I know this??

   I was infected during 8th mo of pregnancy with 3rd child while completing my PhD coursework just prior to starting my thesis. and that was in 1989–so I am absolutely sure as a developmental biologist what the status of what was known and not re: this illness at that time.

   So you see, that person couldnt have known to “warn” you about anything–at that time Im sure he fully expected to be CURED as we all did back then. Heck I went thru 3 different remissions of varying duration over the following 10 yrs and even I thought each was a Cure and not a “relapse”!!

   I just wouldnt want you to waste energy with misplaced blame.

   As far as the rest of the site—the tiny print is very hard to read, and the white on black makes it even harder. I know that many with worse neuro Lyme sx than mine wont be able to read more than 1-2 lines and then leave here.

   Frankly Im having a hard time too!!

   Other than that, Im afraid that among the good and valid info here, the posting of less than valid and misleading info will indeed misinform others too. Its my little pet peeve–I feel strongly that misinfo and wrong info as wel, as partial/incomplete info is far worse than no info. Ive spent almost half my life first Unteaching misconceptions before I could even start to reteach the correct stuff

   In addition to Science Educational Consultant i.e. a K-12 science teacher trainer,science program evaluator, and curriculum writer/consultant; University level instructor, Lab researcher in developmental bio and growth hormone studies; I have also for 20 yrs continue as a Lyme pt advocate and patient educator

   This makes for a solid basis for evaluating content, enables me to compare and vet sources and try my best to prevent the passing along of incorrect or partially correct or even incomplete information.

   Your mix of good vs poor vs untrustworthy links and choices of which theories youre ascribing to will confuse many Im sure.
   I wonder if this is due to your lack of science background, lacks of solid experiential knowledge, or naivete of “believing” too much of what you hear or read.

   In any case this site could make for a strong resource, depending upon your allegiance to various things and promotions.

   You also sound intelligent and so someone with whom I would consider possible discussions about content.
   be well
   Fin24

   Fin24 said this on June 30, 2010 at 11:23 pm | Reply

   • “So you see, that person couldnt have known to “warn” you about anything–at that time Im sure he fully expected to be CURED as we all did back then. Heck I went thru 3 different remissions of varying duration over the following 10 yrs and even I thought each was a Cure and not a “relapse”!!”

     The amount of information available on LD is growing and improving everyday. Those people who recognized LD 20 years ago certainly had insight into their symptoms; how they contracted it; and how it was diagnosed. They were also exposed to the limited knowledge doctors had and the red flags to watch out for. That info certainly could have been shared.

     Unfortunately, the disease back then was so rarely recognized that those with it felt chastised by it. In my situation, I was diagnosed around 2000 and have been spreading the word since. Though, many thought I was nuts.

     https://lymehandbook.com/2010/01/15/commentary-the-lonely-soapbox/

     Rob said this on June 30, 2010 at 11:53 pm | Reply

   • “Your mix of good vs poor vs untrustworthy links and choices of which theories youre ascribing to will confuse many Im sure.
     I wonder if this is due to your lack of science background, lacks of solid experiential knowledge, or naivete of “believing” too much of what you hear or read.”

     I am not really sure which links you find untrustworty. Most all my links are either Lyme association web sites, Universities or medical prossionals. I would certainly pull any dubious sources.

     All the best,
     Rob

     Rob said this on June 30, 2010 at 11:57 pm | Reply

   • I believe you are questioning the Townsend Letter I posted. Questioning their accuracy is a fair challenge as much as it is fair to challenge any study or opinion. The board and the letter’s staff is comprised of several medical professionals. And that too is fair game to challenge. I’d rather leave the accuracy challenged by others who might have greater insight into the matters. Assuming their medical credentials are legitimate should be sufficien to allow these doctors to voice their views.

     I did find the stats on the potential threat, percentage of misdiagnosis of value to my readers. These numbers have been reiterated by several sources including the CDC.

     Rob

     Rob said this on July 1, 2010 at 12:19 am | Reply