Saturday, September 20, 2008

All better now? Um, no

Back to: Poking, prodding, and hard drugs

November 2007

It was actually late October when I finished 3 weeks of Rocephin. I was no better, and in some ways worse. The ID doc was ready to pull the PICC line. My wife and I explained how I was no better, and we had read of longer term courses of antibiotics being effective.

Please, sir, could we have some more?


The doctor got very smug and superior, and eventually angry, as he explained that:
  • All the lyme was 100% gone from my system.
  • I now had something called "post-lyme syndrome", which is my own immune system overreacting because it still thinks it's fighting non-existent lyme. (Do I make this sound nuts enough? Total fantasy is what it is.)
  • Any more antibiotics through the PICC line would actually risk my life!
  • I now just have to be patient, and wait anywhere from 3 to 18 months (!), and the mental function is the last thing to come back.
Finally he relented, and prescribed just one more week of Rocephin, but was adamant that that was all we were going to get from him. In the same breath, he very smugly told us that the so-called lyme literate doctors out there are all quacks, and we should avoid them. That we'd be better off using the money for a massage.

We asked if there was anything else we could do, and he mentioned magnet therapy, acupuncture, and anti-depressants.

So, we went in search of another doctor. We got an appointment with Dr. Steven Phillips, a well-respected lyme literate doctor in southwest CT, but it was a couple months out, and it wasn't covered by insurance, and cost $625 for the initial visit. Oh, I wish I'd listened to my wife and kept that appointment.

We ended up with another ID doctor, who listened and decided I could have a few more weeks of antibiotics. She didn't want to continue the Rocephin, and prescribed Claforan aka cefotaxime. Like Rocephin, it was also pushed through the IV, except three times per day instead of one.

The first dose was administered by the home health nurse, and I had my normal reaction (which isn't really normal). But the second dose 8 hours later didn't go too well. I started having very loud ringing in my ears, which has persisted to today - sometimes quieter, but always there. I never had that before.

My brain was very jangled - I couldn't think straight, couldn't even calmly sit. I was hallucinating and very agitated, and my heart was pounding very heavily, and I had a very difficult time getting to sleep. A thoroughly awful feeling. On top of that, with the third dose I got a horrible migraine. I've only had one migraine before, induced by caffeine in coffee. You might ask, "are you sure it's a migraine?" If you wonder if you have one, you don't. If you do have one, it's extremely obvious. I remember ultra-slowly getting out of bed in the middle of the night, so as not to jar my head at all, and went into the kitchen to get a bit of bread to chew on to combat the nausea from the headache. I couldn't chew, as it hurt my head so much. Crazy.

After the third dose, we discontinued it. When we called the doctor she didn't want anything to do with me, as I "obviously" was allergic, and she couldn't even give me penicillin because it could kill me. I asked if I couldn't just go back on the Rocephin, which is all I ever wanted, and she said no, that I was probably allergic to that now as well. The only course she recommended was getting admitted into the hospital and undergoing a course of penicillin there. I said OK, let's do it, and she, the Infectious Disease specialist, said she wouldn't want to be involved. That I should be under the care of an allergist. Man, talk about passing the buck.


So, we went to an allergist. We didn't bother testing the Claforan. I did have a very minor skin reaction to the Rocephin, but I still suspect I'm no more "allergic" than I ever was. Apparently it's near impossible to test for penicillin, as the serum is no longer produced.

We didn't know what to do next, and I was still extremely ill. After days of trying, we finally got the ID doctor to call us back, and she spent 10 minutes yelling at me, and refusing to treat me.

I scheduled the PICC line removal, and we settled in to wait 3 - 18 months, because we didn't know what else to do.

Around this time we also saw a neurologist, recommended by this second ID doctor. I was at the time under the illusion that if I did what she recommended, that she might treat me. So, the neurologist listens a bit, and doesn't say anything conclusive, except that he'd like me to get a SPECT scan, as it might show a particular lyme signature. I don't know why we did this, because we already knew I had lyme. In fact my wife pushed back, but in the end we did it.

According to the neurologist, the results were inconclusive. Some left parietal hypoperfusion (which I've later learned is very conclusive of lyme). That's all he told us. We had the report sent to the GP, as he was coordinating our care, sort of. So, he calls us in to discuss this. And he shows us the report, against the neurologist's wishes. It says "POSSIBLE INDICATION OF EARLY ONSET ALZHEIMER'S." I remember it in all caps, the letters flashing. Ooof. So, the GP is very, very concerned about this. But we called the neurologist and he said the reason he didn't tell us is because he doesn't believe it was read correctly, and that there is no indication of alzheimer's.

Next up: Getting better, or going crazy?


naomi said...

Hello: Thanks for your blog. I am undergoing long-term antibiotic treatment for Lyme as well. It remember when I was first diagnosed, and my hesitancy to go on antibiotics. I had been sick for years and could barely walk. Now, 14 months later, I am very glad I am taking the drugs and I am grateful to my doctor.

If you want to read my blog, it is at Thanks!

Joe said...

Hi Naomi,
Thanks for reading. As you may be able to tell, I just started this blog, and still have a bunch to post to "catch up" to present.

I'm just happy to be able to get any blog up and running, as it's only recently that my mind works well enough ... you know how it is.

I took a quick look at your blog (thanks for the link). Very nice. I'll spend more time reading it soon.

Note: I finally got back on antibiotics 7 weeks ago, and am having "good" results, which of course means I feel like crap all the time :)


naomi said...

Hi Joe: Thanks for the link! I put your link on my blog, too. I especially like your "what I wish I knew earlier" post. I might try to do something similar myself if you don't mind.

I'm glad you are feeling well enough to write. I know I've been through times when writing was impossible. Keep it up, it's good!


Joe said...

Hi Naomi,
Thanks for the kind words. You inspired me (made me get off my butt) to finish writing my "what I wish I knew..." post. So there's a lot of information up there now.

Please do write your own version. While we all share the basic lyme experience, it's different for all of us, and my observations are very personal and subjective.

I would have liked to read various perspectives like this when I first got sick.


Anonymous said...

Hi Joe,
I am waiting patiently for my appointment with your LLMD in November. I have been suffering since April and have got no help from any doctors. I was also told i have post lyme syndrome from my ID doc. Unfortunatley i am one of the lucky ones with a negative test through quest. I had a rsh on my stomach in sept. 2007 circular and funny...i ignored it although it looked a lot like ringworm but wasn't. no doctor took that seriously...i felt they thought i was making it up! i even had one doc tell me i should start a gratutude journal and write down everything i was thankful for because i looked pretty healthy to her! so i have hope that dr. P will help me after reading your story. i hope you are feeling really is a sucky thto get, huh???? we camp and have dogs, i understand how hard it is to be afraid of the things you love most!!!! did Dr p have you do all your bloodwork over again...the office staff was very nice when imade the appointment. 5 weeks and counting!!! take care!

Joe said...

Dr. P pretty much ignored my fancy Fry Labs and IGeneX bloodwork. For starters he had me get all kinds of blood tests, but all normal Quest stuff, all covered by my insurance 100%. I don't get the impression he tries to prove by blood test that you have lyme or co-infections. He relies almost solely on clinical diagnosis, and he'll be interested in your past medical history.

And now he has me going for blood tests about every 10 days while I'm on the meds, mostly to check organ function. Also 100% covered.

A gratitude journal. Now that's pretty funny.

Dr. P will take you seriously.


Anonymous said...

Thanks for responding. I have heard from others that dr. P is very good. I wish I had made an appointment with him at the start of all my symptoms in April. I would be on the right track by now. But I am thankful that I did all the research about all of this doctor stuff, how crazy it is with the Lyme. When I wasn't feeling well after 6 weeks on low dose of doxy, my ID doc said the whole "post lyme syndrome"stuff, he actually was kind of mean to me. I think he didn't want me to come back just s he didn't have to deal...because he didn't know how to. I wish they would get educated. It is only a matter of time before one of "them" gets sick...with the way this disease is I am sure that won't take long. Take care and best of luck to you in your recovery...I have heard a lot of success stories from people who have had it awhile like us. I really believe there is hope!