Blog posts

Treating Lyme...Other Recommended Tests?

Submitted by B3Better on Sat, 2008-08-02 20:17

Hello :)

First want to give my thanks for this site and all of the intelligent and caring people that contribute...

I've been treating Lyme disease for 7 weeks via heavy IV abx (Rocephin) and several oral ABX with NO result whatsoever!

My Lyme dx was clinical although supported with an Igenex Lyme test that was VERY reactive to 'something' - for those familiar with the test I had 12 bands that were either positive or indeterminate (weak positive)!  BTW, I have tested negative for hepatitis, hiv, syphillis etc.  Apart from neuro sx's listed below, I consider myself completely healthy at age 39.

5th pulse in progress

Submitted by Tina on Sat, 2008-08-02 16:00
I started my 5th flagyl pulse on August 1st.  This pulse will consist of one 250mg tablet 3 x a day for 3 days.  My last pulse, in July, was rather unremarkable as I don't remember any pronounced die off episodes.  I am wondering if I am being too timid and should be pursuing the flagyl pulsing more aggressively.  I can't say that I have experiened any improvement in my neurologic status, but then I am only on my 5th pulse with dosing half of what is recommended.  My most pronounced disability related to MS is in my right leg, which I cannot bend or lift, but must must throw out to the side inorder to walk.

3rd PULSE done

Submitted by macorn on Sat, 2008-08-02 13:48

Finished 3rd blog -- 5 days.  I dislike them tremendously but I think it's because of normal reactions to metro vs CPN die-off -- extremely tired, weak.  I hope not.  I feel that my MS is progressing to the point that I can't go very far at all with my rollator like I used to.  The reason I think I'm progressing instead of CPN die-off is because this progression began before I started CAP.  I have never been tested; DO YOU THINK I SHOULD?  On the positive, I got a beautiful Himalyian kitten yesterday -- I think I'm calling her Baby Bleu -- I'll post a picture of her one of these days.   

Cutting back

Submitted by Sunnivara on Fri, 2008-08-01 18:27
After a couple months on 500mg/day of azi I just couldn't take it any more. The constant bone-deep flu-like achiness is just too miserable to tolerate for months on end. After just a few days back at 250mg I'm starting to feel better. My doc and I agreed I should stay at 250mg/day for the azi for a while and we're going to add some bactrim. Hopefully that will make things a little easier. I just got a prescription for my next flagyl pulse and the bactrim so now I'm trying to decide if I should wait until after my flagyl pulse to start the bactrim since starting both at once might be too much. What do you think?

Friend has a very hard time but coping!

Submitted by Mariapatri on Thu, 2008-07-31 20:32

Hi, this friend of mine, and probably friend of many of you - because he's been in this site way before it started- sent me a short message, telling me his last "news". It is a difficult situation but he has the most strong spirit of the planet! And, due to his current condition, he won't be physically answering to your comments, but would be very thankful for your love and care; and for sure your good wishes will help him a lot!

Pulse 9 - some real improvement at last !

Submitted by robertd on Thu, 2008-07-31 15:44

It's been a while since my last entry, but I've been so busy trying to keep a normal life together. My progress through the last few pulses gave nothing very positive to report. Each pulse was accompanied by broadly similar effects - an upset stomach, an increase in the burning feet and restless leg symptoms, which tapered off towards the second week, and serious fatigue, which was always present. In fact I seem to have slept for most of the previous four pulses, perhaps I needed it.

IBS type symptoms

Submitted by bugcity on Thu, 2008-07-31 08:28
I'm new to this site and would really appreciate some advice.

I started a CAP in June and got as far as taking doxycycline, azithromycin, omeprazole and NAC for 5 weeks plus a pulse of metronidazole before I had to stop because of bad abdominal symptoms. I've had IBS since childhood (now in my 40s) but was diagnosed with CFS three years ago and recently had a positive test for Lyme Disease. The doctor who is overseeing the protocol (a doctor who has many patients in the UK on his protocol) suggested I stop for four weeks before trying again (I'm now taking a herbal supplement to boost immune function).

My update, and more proof that its cpn that causes my symptoms

Submitted by clammed_up on Wed, 2008-07-30 16:45

Hello, Im still alive

Here are some updates. After the surgery I went to my inf/internal med dr ( the good guy ) and he thought that it might be better to treat me for anerobic issues with long term clindamycin instead of treating me with doxy/zithro, so i got a script for clindamycin and proceeded to go off the doxy/zithro ( all as a trail of course ). Within 2 days I had chronic fatigue symptoms, severe itching, nasal and sinus itching and swelling, muscle pain and mild facial rash. Ofcourse i went back on the doxy/zithro and i was better within one day of reinstating the doxy and zithro. ...Cpn lives on?

The only problem I have is that the cap combo plus the clindamycin is really hard on my stomach.