After starting ABX...

[Buddy88]

I saw my ID doctor yesterday, and he asked how I reacted after starting the medication....  I told him the new symptom is I started to smell smoke and other strange smells, had a cold night sweat, felt even more tired now....  He said, good.  That's the sort of feedback I'm looking for....  Let's me know that the ABX are working and we are on the right path.....

He said that it gets worse before it gets better, and the better part generally doesn't start to happen untill the 5th month of treratment.... Usually the first improvment is the joint pain....  Nurological issues last.......  Also said that he just came back for a Lyme conferance and he said that 100% recovery from nurological lyme has an average of 26 months!!!!!  Well, at least I now have a time frame on when to start to expect to get better....  I was getting a little worried that I was almost 2 months into my ABX, and was still feeling worse than before I started!!!

Here's looking to better days ahead..... 8-)

[Buddy88]

One other thing he told me to do that probably makes sense is to stop taking some of the meds that the GP had givien me for my symptoms.... Mainly the Gabapentin.... He said that it generally doesn't do much but as it is designed to surpress nurological symptoms, it also creates symptoms....  At this point, it's better to not create or surpress as the symptoms are the key drivers of the treatment....  He did say however to keep taking the general pain killers if I need them as they don;t really have any adverse side affects....

[Buddy88]

I'm still waiting on the babesiosis test result.... That was sent down to the US... But he did say, no... You probably don;t have it... but I tested you anyways... He said he would know if i had it....

What are the symptoms????  

[Buddy88]

He tested me for several infections.... Thus far indeterminate for Lyme, and negative for others.... Unfortunately some of these co-infections testing aren't even done here in Canada.... Most doctors in Canada still believe that Lyme hasn't crossed the border yet.... I'm still waiting on some results that were sent down to the USA....  He is targeting Lyme and "other infections" in my treatment... I didn't ask for which others....

One interesting thing he said is that even IGENX testing isn't that accurate in his opinion....  They are better than the average run of the mill labs, but they still have quite a bit of false negatives.... His approach to diagnosis is clinical, exclusion of other possible causes (ie MRI's, EMG's Blood tests to exclude other diseases) and the reaction to the ABX once administered....   He told me that their are very few things out there that can cause joint pain, muscle weakness, and a whole wack of neurological symptoms.... And it's not that difficult to exclude the others.... The only one thing that can cause some overlap with lyme to some degree is chronic fatigue syndrome or lupus.... But he said that i definatly don;t have that since I did get an ECM rash, and a few other symptoms that are fairly exclusive to Lyme...

[Buddy88]

Your lucky!  You were diagnosed so early... You should hopefully recover quicker!!....

The time frame he gave was for me as it was over 1 year before I was diagnoised.... I was in pretty bad shape by then... could hardly walk up one flight of stairs and at times could bairly get out of bed.... And also MAJOR nurological problems....  But he said I should recover.... He had one patient who didn't even know how to open his house door with his key... He would just take his key out at the door and then get "stuck"...  Well, after 2 1/2 years of ABX, he is almost 100% now....

[JackieCalifornia]

Sounds like you have an open-minded ID doc!  That's great news, and excellent news that he is talking with you about length of treatment and so on.  

I do dislike MDs who say "Hmmm, take this pill for three months and come back and see me then if you're not better."  I'm sure that works for them, but not so much for me.  I need to understand and know what the outlook, time frame, and possible adverse side effects are that I should watch for.  Sounds like your doc is a *communicator.*  Excellent.

Sounds like you're have some Herxing, from the bugs dying off.  I think some people get Herxes in waves, others get them more constantly -- everybody is different.

Were you diagnosed with any coinfections -- other diseases that the Lyme ticks sometimes carry?  They don't always respond to the same abx that Lyme does, and they give different symptoms.  (The first time I had Lyme, I also had babesiosis; the second time, I got Lyme plus Rickettsia.  Very different symptoms.)

I agree with your close -- "Here's to better days ahead!"  Hear, hear!

[kamrynkade]

Wow, that's an amazing ID doctor.   You only hear bad things about them on these forums.  

Thanks for the information.  

I'm six weeks into treatment, been having symptoms for about 3 months.  This disease is so tricky because there are days when I feel like I'm beating it and almost normal and then the weird symptoms creep back up.  That is a good timeframe to keep in mind.