My Story and My Doctors Approach to Treating Lyme

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bobby41
New Member


Date Joined Mar 2010
Total Posts : 4
   Posted 7/6/2010 11:42 AM (GMT -6)   
I have been having crazy symptoms for the last 5 years, was diagnosed with Lyme about a year ago and I am currently
working with a Lyme specialist who has been treating lyme patience for about 20 years and seems like he's a
straight genius.

It all started about 5 years ago with anxiety that just seemed to come out of no where. I was really nervous all the
time for no reason and I couldn't figure it out. I went to psychiatrists who prescribed medicine like klonopin and zoloft,
both were just horrible. I know that plenty of people get anxiety, but for me it just didn't seem right, because I feel like
nothing about my life or the way I was thinking had really changed.

about a year and a half later I got hit with Epstein Barr Syndrome. That sapped the life right out of me and it took more
then a year for me to recover. I couldn't do anything physical. I felt like I was getting sicker by just walking out to my car to go to work.

Right after recovering from Ebstein Barr I started having really horrible eye pain, joint pain and mental problems. I was
really starting to have problems thinking and it even landed me in the emergency room a couple of times. Of course they
weren't able to tell me anything, which was just one of the worst things to deal with.

The mental problems got worst and it turned out that I had alot mercury built up in my system. After chelating for about 3 months I was able to think alot clearer and I thought I was finally on the road to recovery. But, of course I was I wrong.

about a month after chelation I really started to feel horrible and thats when I was referred to Dr. B, the lyme specialist.
I thought for sure that I didn't have Lyme because I was tested for lyme almost every time I went to the emergency
room. Even though all my lyme tests were negative, he still put me on Biaxan (Clarythromyacin) for about a month just
to see if there was any kind of reaction, because he knew that lyme tests were faulty and that Lyme disease sometimes
required a clinical diagnosis. This is one of the many reasons why I love this doctor, because every other doctor that
I saw said, "The lyme test is negative, so you don't have lyme." Which, to me seems absolutely ridiculous that these
doctors are this unaware of what is going on and it really makes me want to hit someone.

about TEN MINUTES after taking my first dose of Biaxin I knew that I was on to something. Immediately I felt better, in a
way, it was a herx reaction, but it still felt a better then how I was normally feeling. One of the reasons that I felt "better"
with that first dose is probably because of the anti-inflammatory reaction that is caused by antibiotics. I came to learn
that the inflammation from the Lyme Bacteria is the culprit for most of the symptoms that you get, including fatigue,
blurry vision and joint pain and as you kill the bacteria the inflammation actually gets worse, which might make some
people feel like they aren't getting any better when actually they are.

So, I have been on Biaxin and Ceftin for about 5 months. Dr. B tells me that Biaxin stops the bacteria from spreading and
Ceftin kills it in the hard to reach places like my joints. He also, told me that 99% of the people that he treats are cleared
of Lyme. The difference is whether or not the person has been infected by a strand that is capable of getting into the eye.
The eye has no blood flow, so antibiotics can't get in there to kill the bacteria if thats where it has gone to hide. So, when
you stopping taking the antibiotics, the Lyme Bacteria comes out of the eye and reinfects your body and this is Recurring
Lyme Disease.

He said that 2 of the 5 recognized strands of Lyme in this region (North East America) are capable of getting into the eye.
One treatment that he likes to perform at the end of the antibiotic treatment is a course of iron supplements based on a
Ferritin Test. Lyme bacteria can't survive around iron, it dies almost automatically and iron is every where in the body, so
if the Lyme is hiding in the Eye, the iron could have a chance of killing it.

I have about a month left of antibiotic treatment and in the last week of treatment I am going on a steroid dose pack
to help with the inflammation left over from the Lyme Infection, along with the iron supplements for a couple of weeks.

I am also taking Low Dose Naltrexone that prescribed to me by a homeopathic doctor. I have been reading some
pretty incredible things about this drug and my Herx Reactions definitely seems stronger when I started taking it. I am
expecting LDN to help the antibiotics do a better job of killing the Lyme, I am expecting it to help the inflammation heal
quicker and hopefully, if there is still Lyme Bacteria left in my body, the LDN will keep it in check.

This is what I have learned from a Doctor who really has treated almost thousand of patience. I find incredibly interesting
and I am hopeful that this doctor can cure me, because Lyme is ruining my life and I can’t imagine living with this
forever.

frikandfrak
Regular Member


Date Joined Jan 2010
Total Posts : 22
   Posted 7/7/2010 5:40 AM (GMT -6)   
Hi bobby41,

My son has neurological lyme since 12/09. has gotten progressively worse each month. I'm looking for a new LLMD to take him to, can you please email me and tell me who yours was, PLEASE. My son (19) is barely able to walk and cannot function now, has even stopped eating on his own. Any help you can give would be great, thanks

ftsand2@hotmail.com from NJ

diaba
Regular Member


Date Joined Aug 2009
Total Posts : 175
   Posted 7/8/2010 7:48 PM (GMT -6)   
Hi bobby41, thanks for sharing your story and treatment. Wondering about the steroids though, thought they were bad for lyme.

take care, diana

bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 7/9/2010 12:45 AM (GMT -6)   
hey Bobby,, great post...

can u email me name of doc? is he in florida ?

I hear mixed reviews on the steroid pac.

first it is different to get a blast to snap people back into shape than it is
to be on a maintance dose.

good luck with your treatment and keep us posted

lots of love
bucci
hep c , lyme
Dad has lyme


bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 7/9/2010 12:46 AM (GMT -6)   
hey bobby..i for got to ask..r u taking pain medication?
hep c , lyme
Dad has lyme


bobby41
New Member


Date Joined Mar 2010
Total Posts : 4
   Posted 7/9/2010 9:28 AM (GMT -6)   
Hey Everyone!

Diana,

The steroid pack would be bad if it was taken alone, without antibiotics. If you still had a bacterial infection of any kind and you the steroid dose pack (methylprednisolone), you would basically be shutting down your immune system and letting the bacteria run ramped. Which is why I will be taking an antibiotic while on the dose pack. In fact my doctor told be that any time you take a dose pack, for anything, you should take an antibiotic, because you never know if you have an infection or not.

Bucci,

Your right I don't think one dose pack over six days is enough to really calm down any of the inflammation. My doctor does the 6 day dose pack to gauge your reaction first. Then, a couple of days later he prescribes the same dose pack, only spread out over 12 days instead of 6. He dose admit though, he doesn't really like prescribing steroids because of how bad they can be for your body. He also has an anti-inflammatory that he prescribes for inflammation.

My inflammation (infection) had gone undiagnosed for so long that the inflammation got really bad and is taking a long time to heal. The symptoms are blurry vision, fatigue, and headaches coming from my stiff neck. So the anti-inflammatory treatment is like a shot of life, the fatigue and blurry vision clear right up, until I stop to the anti-inflammatory, then it comes right back. He said it could take 6 months to a year for the inflammation to go away. And reading some of the posts online here, it seems like some people confuse that inflammation with still being infected.

about the pain medication, I am not on any pain medication, nor do I think I need. Are you asking because of the eye pain that I may have mentioned, or because of joint pain? My joint pain really isn't that bad at all, its almost none existing. Except for my neck, which gets really tight and in turn causes headaches and eye pain. Put thats manageable with weekly stretches and trips the chiropractor.

Thanks guys, I love sharing all of this information that I gathered from my doctor. You can probably tell by now that I wasn't kidding about him being very informative, spending hours with his patience and the fact the he has been devoted to treating Lyme for about 20 years. He inspires me to be a doctor.

Take Care -- Bob

LearnLyme
Regular Member


Date Joined Aug 2013
Total Posts : 332
   Posted 1/9/2014 12:09 PM (GMT -6)   
Thanks for sharing. I was dx with MS first and was given 2 rounds of MethylPredisolone and it actually helped relieving my symptoms within days. I had one 5 day course and then 2 weeks later had a 3 day course. I do hear that steroids are bad for Lyme, but they helped me prior to being dx with lyme months later.

I had some major eye pain here and there as well, so thanks for the iron tip. I will have to look into that. My LLMD seems very knowledgeable as well, but I guess I have to ask the right questions to gain more insight.

You should open a free blog at wordpress and document your steps to help yourself and others.
08/12 - LabCorp WB Lyme positive for bands 23/41, but CDC negative
12/12 - Diagnosed with RRMS
10/13 - Igenex/CDC Lyme Positive - 23-25, 31+++, 34, 39, 41+++, 83-93

My Story: http://www.learnlyme.com

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35849
   Posted 1/9/2014 1:28 PM (GMT -6)   
Actually, when a doctor prescribes prednisone for anyone with known Lyme disease, it should be considered malpractice. Lyme disease is a bacterial infection - and there are strict rules about giving immune-modulating drugs to those with active infections. Since these drugs cause a reduction in immune function, it allows the infection to really penetrated tissues, bones, the brain - everything.

Also, this is a very old thread (by forum standards) as it was active back in 2010 - 3 1/2 years ago.

FaithnJesus,
Welcome to our community! As I said, this is a very old thread, and none of these posters - other than LearnLyme - is active here any longer -although they could always surprise us, they likely won't post in answer to you.

I took your email out of the post, as we are an open forum - meaning that anyone with a computer can read (and get your email address) these threads. If you wish to have us help you find a LLMD, we'd be happy to!! Here is a much safer way to go about finding a LLMD near you:

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, you can start a new thread titled something like:"Looking for LLMD/LLND in the _______ area." Although you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.

You can email Stephanie at: stephanie@turnthecorner.org You can also go to: www.turnthecorner.org/ if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS (International Lyme And Associated Diseases Society) trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. The ILADS site is another great place to read to get you started on your Lyme journey. www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

If you haven't already, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists (as Lyme rarely occurs by itself), helpful links and pdf's, how to detox when one has these infections, and a list of questions that you can ask any doctor that you are seeking treatment from!
Treatment for Lyme & Bart ended Dec. 2011 - no active symptoms
Treatment for Babesia ended Dec. 2012 - no active symptoms
Healed and loving life!

Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV

Questions about what I've posted or just have questions? Please email me!!! Click on blue envelope under my screen name.
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