Aggressive lyme treatment 10 years ago are current symptoms lyme related??

Hi all,

Agressively treated lyme 10 years ago with IV Rocephin for one full year and oral antibiotics and bicillin shots for another full year.

I have had to treat every other year since then for about three months to beat back the symptoms..

Fast forward to this year. In February I ended up with sciatica, by March full blown sacral pain. By the end of April I had severe rectal pain. I've had four colonoscopys in ten years. I have a history of diverticulosis but never to my knowledge have I had a diverticulitis attack.

I had three MRI's a catscan and finally they did a Petscan to see if cancer was hiding out. Nothing has shown up. They put me on flagyl/cipro and the rectal pain disappeared. They are now treating me as if I have lyme. My lyme Dr. (has treated lyme for over 20 years) is convinced that's what I'm dealing with.

I personally think I have a fistula and am having an MRI specifically to look for this on Tuesday. All the MRI's the did were low back related and pelvis so they were not even looking for a fistula.. I have some other symptoms pointing towards a fistula.

My question to you all is, have any of you ever suffered severe rectal pain with lyme? I just don't buy it. I can't believe it would cause rectal pain that was so bad I needed Percocet to deal with the pain.

Then again the cipro/flagyl combo got rid of the pain so it's clear there is some sort of infection going on...

Your thoughts please?

sf-

you should look into pulsing abx ...see if that can't get rid of what remains.

Ive never come across a forum post that had both lyme and rectal pain in it...but i guess its possible. Lyme seems to like the heart and joints.

sf - are you completely symptom free each time you re -treat? Or, is there a few minor symptoms remaining? Have you tried treating for an additional two months past symptom resolution? Or are you stopping as soon as you are symptom free?

And from what I've read/experienced - Lyme can go anywhere. I have not had rectal pain, but I have had excruciating tailbone pain....it has finally gotten to about 80% better -
The tailbone pain started in January, 2014 (lyme symptoms started April 2013)
I started treatment July, 2014...and it took until May of this year before I saw improvement.

Hope you come back to post after your mri results...

Thank you again for all the replies.. It is very much appreciated. I treated lyme as aggressively as one can. Believe it or not I was sick for a year and my primary sent me for a PetScan and it was the Oncologist who suggested I be tested for a tick bite, lyme disease. His best friend's wife had lyme.. Well sure enough it was lyme and I was CDC positive which for anyone with a lyme is a plus?? Yeah right.

By then I was so ill I had been at both ALS clinics in San Francisco and thank God they said No it isn't ALS but it sure is something. I had the good fortune of living in a City where there was a lyme literate Dr. I treated for one full year on bicillin shots and oral's.. When my myoclonus and seizures continued they put me on Rocephin IV for one full year. I had a port put in my chest and did the IV daily.

The two years was followed by three more months of orals and bicillin shots. I went two full years with not one symptom. I would say that's pretty aggressive and the only way to know if the treatment is working is getting off the antibiotics.

I followed Dr. Burrascano's guidelines to the T. I even met him in San Francisco (2007 lyme converence). and had a very detailed conversation with him about my treatment.

I personally don't believe you ever rid yourself of lyme when your diagnosis takes more than a year in coming. Again that's my personal opinion. My primary Dr. is also of the belief it never leaves your system if treatment is not immediately forthcoming after the bite.

I am now of the belief for me it's a chronic thing. I work hard at eating right, exercising and sleep. They are probably the most important parts of my day that I stay on top of. I do notice that when I am under stress, the lyme hits hard. That is one area of my life I need to work harder at. A more stress free life..

Again thanks everyone for all the information. I am still treating with the Lyme Dr. who got me back on the road to Life again back in 2006.

The thing is, no matter how aggressively your infections were treated, if the bacterial loads were still too high when you stopped the treatments, then you still weren't treated long enough. You have to go at least two full months without symptoms.

The fact that you have to keep treating the symptoms also shows that you simply didn't get adequate treatment - for you it was likely that it was just cut off too soon.

I know that when I was still infected, I dealt with a lot of sciatica, sacral joint pain (youch!), and rectal pain. And since it's all in kind of the same area of the body, it makes sense that it's connected.

Please don't underestimate the importance of detoxing either - it made all the difference in the world for my healing!!

Please do let us know how we can be of help to you!

Pirouette,

Thanks for your reply. The entire time I was on Rocephin I was also on flagyl or tindamax. Both of these are thought to help with the cyst form of lyme. I definitely was treated by a very recognized lyme Dr. whose been treating lyme for 20 plus years.. Prior to the Rocephin I did Bicillin shots 3.2mg x 2 a week and was doing other antibiotics the whole time.

As far as the life changes and GI issues. I've had GI issues since the beginning of my lyme Journey. I even lost my gallbladder with the one year Rocephin Treatment. They warned me up front about the damage it causes to the gallbladder.

I'm very diligent about probiotics, acidophilus, yogurt to help my GI system. I eat really well but will admit that my sweet tooth gets in the way of things quite often. I was told by my lyme Dr. to forgo all sweets as it only makes things worse with lyme.

Tuesday I have an MRI with contrast to see how my diverticulosis is and whether I have a fistula. I am really torn with the rectal pain symptom. Right now I'm not suffering from it. I still don't know if it's GI related or the lyme?

Oh and yes, the Lyme bacteria literally affects all the tissues of your body; it scrambles your genetic material, everything.

That's why it's considered to be an "intelligent" bacterium.

Margaret