Getting Better (cont)

[cobweb2]

chronic persistent lyme since being treated inadequately by Quacker.

Now on IV Rocephin plus a mess of other stuff.

I have a bit of Lyme Brain so it may take me a while to learn how to navigate around here.

Karma points make me real nervous-my self esteem is low and my insecurities are high and I'm really sensitive about what other's think.

I hope I don't become a brown noser just to earn Karma points.

I also find it impossible to read the "outline print" with the icons.

Carol

[enochroot]

Hi Carol !
How long since you were diagnosed?
How does the iv work for you?

[itsybitsyone]

HI Cobby!

(I know cobby from another board)

I clicked on your Karma and exalted you. Feel better now?

You know, I am really glad enigma added an off topic here...I'm hoping I'll be seeing you there...lol

HOWEVER I hope that here we can have conversations a little more objectively about Lyme, what YOU have been though...because from what I have seen in posts by you and about you on the other board...you have been through the wringer.

Most obviously, you have been to hell, got the t-shirt (and maybe even a decorative spoon and little snow globe...do they sell snow globes in the hell gift shop?)...simply the fact that you exist should be a boost to your self esteem. Not everyone could have been able to handle all you have handled and still be here. That's the bottom line.

I feel out of place on the other board...other than goofing around in off topic with other people who need the release and joking to cope...because I have questions and thoughts that cannot be addressed in that medical forum.

I'm either going to be told to take more antibiotics, get chelation for my heavy metals, or throw away my cell phone because the EMF's are causing my teeth to rot...so far.

Anyway...so far this is a small group and everyone seems to be curious as to what's scientifically proven vs. what gets results in real life but not afriad to talk about critical skepticism even about treatments we ourselves are taking. While keeping an open mind.

You are lots of fun, cob.

And I have to think that your concern about whether you are exaulted or smited was a little tounge-in-cheek.

Do you think maybe you could copy and paste some of your PICC line experiences over here? No one tells a story quite the way you do!

Nancy

[LymeEnigma]

Carol,

I think so far our little group has been very objective, and for that I am extremely grateful. I think, when it comes to a disease so little is known about, we need to be equally open-minded and critical of all viewpoints and therapies out there. There is so much still to learn, both in the medical and lay communities, and we need to be able to question and explore our different possibilities without being labeled or ridiculed.

I hope hear more of your experiences. Don't worry too much about the karma; I haven't had to smite anyone yet.

[cobweb2]

enochroot-first diagnosed in July 2004, positive tests, rash, no question-treated for two weeks with ceftin by PCP, requested one more week, PCP said okay.

By October 2004 the chronic infections started and I was sent to many different specialists-none of whom addressed the possibility my declining health could be due to Lyme.

March 2005 I was placed on disability from work. Saw LLMD in April 2005. Retested, still positive, even according to CDC. Began oral antibiotics and supplements. LLMD is also a homeopathic doc.

Spect Scan in Jan 2007 indicated bilateral brain damage due to lyme. Started IV Rocephin March 2007-have made great improvement since then. Hope to stop antibiotics soon and continue down the primrose path of homeopathics.

Carol

[LymeEnigma]

Wow, you were initially only treated for two weeks, Carol?! What other antibiotics have you been on? Do you have any ideas on how you're going to approach your homeopathic treatment?

[cobweb2]

Yes Lyme Enigma-2 weeks ! Doctor pulled out his handy dandy IDSA guidelines and looked up treatment for Lyme. Ironically-I was relieved he recognized the rash on my stomach and immediately diagnosed it as Lyme Rash.

I was clueless at the time-naively relieved he was willing to treat me. I had to ask for the third week since i still didn't feel well.

I started on Ceftin. That's all he gave me.
Two years later at LLMD's office she started with triple the dose of Ceftin. I've also taken Doxy, Mino, Flagyl and now IV Rocephin. And Artemisinin for Babs.

My LLMD is homeopathic-so I will take what she prescribes. So far the Art, vitamins, SAMe, magnesium,probiotics, Acetyl-L, Ursodol(script for gallstones while on Rocephin),melatonin-didn't do too well with that.

So once I stop antibiotics we'll see what she continues for me.

[LymeEnigma]

"I was clueless at the time-naively relieved he was willing to treat me. I had to ask for the third week since i still didn't feel well."

I think that's where most of us get started in this little quest for truth we're all on. I know I was begging for another refill when I finished my initial doxy treatment a couple of years ago (and my doctor was good enough to prescribe twice the IDSA recommended length, to begin with) ... and I was also very naive about it all when my doctor refused further treatment. I had no clue that there were other people out there who were also still sick after "standard courses" of antibiotics; when I went online and actually started reading, I think my jaw must have hit the floor.

I used to use melatonin, and then it just became ineffective. It seems the only thing that was able to help my chronic insomnia was antibiotic treatment. Knock on wood, sleep has been pretty good still, even now off the meds.

You've been on a lot more antibiotics than I have. I've never taken the i.v. route, but I know that some people do not progress without that little "kick in the rear." Keep us posted on your treatment.

[cobweb2]

I'm a little bummed right now-because I have been feeling so much better on the IV.

Then Dr. Fallon's study came out-which confirmed the effectiveness of IV against the cognitive impairments of Chronic Lyme-which is great-

but it goes on to say that the improvements do not continue once the IV is stopped.

So where does that leave me? Feeling great-as long as I'm hanging from an IV pole?

[LymeEnigma]

I believe Dr. Fallon's study goes so far as to say that the positive effects of antibiotic use often wane long before the patient is even taken off the actual antibiotics ... I found the same case to be true with my experience on zithromax: I found great benefit within the first month, the bulk of my nastiest symptoms reducing or disappearing within the first couple of months, but no added benefit after the third month or so, only the sustainment of the first two months' progress.

I believe relapse, after any length of treatment, is always a possibility for someone who has had this disease for a certain period of time. I feel that sustained remission is a good goal, keeping in mind that some lingering symptoms truly may be autoimmune sequelae. I wonder if anyone has ever studied the effects of plaquenil on chronic/post Lyme...?

I believe we can also eventually become addicted to antibiotics, which can make coming off of them difficult and create the illusion of immediate relapse.

Have you talked to your doctor about switching to orals for a while, once you've had a decent course of the i.v.? Maybe you can keep yourself in remission while slowly weaning your body off of the i.v. meds. Are oral antibiotics an option for you?

[cobweb2]

I took oral antiboitcs prior to IV. Limited choices due to allergic reactions. I could continue on oral Ceftin and flagyl if need be.

[itsybitsyone]

I don't think I have ever been on ceftin...how did that go?

[cobweb2]

I was on 2000 mg per day-1000mg in AM and PM.

Pharmacist refused to fill the script at first-too much he said, until he consulted my doc who verified she has had other patients on that dose.

It went okay in terms of it didn't make me dysfunctional-probably did some good-but not as much good as the IV Rocephin.

Guess I better exalt you,too, or you'll get me with that pitchfork.
Hmmmm I just did this to Enigma but I forgot how I did it.
I'll surprise you one day.

[LymeEnigma]

It seems that the exalt/smite option is only open once per person per 24-hour time period. I got her for you.

[cobweb2]

creepy (get it? creepy) picture .

"Here I come, ready or not" says the tick.

Good logo for the "Open Eye Production" by Scott