appointment with Lyme specialist --UPDATE

[jarla]

As of right now, I am flying from Chicago to see my parents near NYC in June and I have scheduled an appointment with Dr. Cameron in Mt. Kisco. Part of me is really excited that I'm going to see him. Part of me is scared s***less that the visit is going to be a huge waste of time and money, especially since he won't take my insurance. So, if you know anything about this doctor, please let me know. Is he worth the trip?

Thanks so much!

[LymeEnigma]

Jarla, I believe Dr. Cameron is one of the better "Lyme-literate" physicians out there. Some people complain that he is not aggressive enough (i.e. won't arbitrarily treat co-infections) but from what I've read it seems that he takes a careful, yet thorough, approach. He is also the current president of ILADS. Good luck ... and let us know how it goes!

[itsybitsyone]

HI Jarla,

I agree with LE. He seems to be a rather professional, good , knowledgable doc, tho I haven't been to him myself. The things he writes are very well balanced and it doesn't seem that he treats for issues that you don't have.

While I don't have personal experience with him, I'm sure you are in good hands. In fact, if I were still living closer to NY, he'd be on the list of ones I'd be interested in seeing.

Good luck and let us know how it goes.

[jarla]

So I saw Dr. Cameron in June. His assistant spent over an hour going over my health history with me. It honestly just felt great to be heard and understood. At the time I saw him, I was on doxy, flagyl and erythromycin. He took me off all of it and put me on 3000 mg/day of amoxicillin. He did this partly because I was having trouble keeping the meds down.


I'm still deciding if that is strong enough. I felt like I was getting better pretty quickly for a while, but now I feel like I've plateaued. I'm seeing my regular doc here in Chicago today to talk it over with him. I don't know yet if and when I'll go back to see Dr. C because the trip and appointment are so expensive.

[itsybitsyone]

Well...how long have you been on abx?

I think everyone goes through a plateau...but slow and steady often wins the race with late lyme.

I don't know that it completely ever leaves. I know it would be great, but I do not doubt that some damage is permanent, like polio or west nile.

I know I was completely unable to guage how I felt until I went off abx for a few months.

[enochroot]

I saw Dr C for months - he is the MOST affordable ILADS guy in the NY area.
He doesn't seem(from my experience with him) to believe in "combination meds"

[jarla]

Yes, Dr. C. is more affordable than others, but it's also the cost of the plane ticket that I'm considering.

I've been on abx for not quite 4 months. I'm going to try doxy again at a lower dosage with the amoxicillin just to see if I respond better to that.

[itsybitsyone]

Jarla...

I did doxy for a few months (3?) followed by a month of high dose tetracycline.

Followed by lower dose minocycline for almost a year on and off.

I am a lot better, but it took me 6-8 weeks after I took myself off for a while for me to start feeling kinda well.

I am not 100%, but I have other issues than lyme to contend with. AND I was sick for a few DECADES before I found out I had lyme.

I'm sure I will have to do more rounds of abx before I am done...maybe over the course of years.

Where are you located??

[LymeEnigma]

I hit a plateau at about three months. I can't say whether another antibiotic may have been warranted at that point, but I do know that it has been nearly a year since I went off the antibiotics (after six months of treatment), and I am still on that plateau. Sometimes I feel like I'm still improving, and other times I fear relapse; I have to wonder, like Itsy, how much of it is damage done ... and how much might just "require maintenance" treatment from time to time.

Hopefully the doxycycline will make a difference for you. Keep us posted.

[jarla]

I live in Chicago. It's not a huge deal to go to NY because my parents are there, but I'm feeling pretty satisfied with my Chicago doc. I think I've had Lyme for 15-17 years, so I'm not sure how much I'll ever fully recover. I would really like to get to a point where I can work and/or start a family.

[LymeEnigma]

Those are my goals, too; sometimes I do wonder, however, how much longer life will stay on "hold" for me....

At least you have options, Jarla. Having a doctor you're happy enough with is half the battle. I really hope that you see more improvement.




*edited to add an "is," so me no sound like caveman....

[enochroot]

Jarla - How many earlier (in your life)Lyme tests did you have before getting
the current positives?

[jarla]

I was tested four years ago. I actually just got my hands on those results. The tests were done at the Mayo Clinic. Only band 41 reacted on the IGG, but my ELISA was 1.47 with 75 considered positive. I didn't understand Lyme well enough then to push for treatment.

Then a rheumatologist tested me in March and said I was negative, but I'm not sure if the test was even done right, Finally, in June; after going on antibiotics, I was definitely positive.

Why do you ask?

[enochroot]

Because I have suspected Lyme as the cause of my illness and even went to Dr C
for 12 weeks of ABX, but never had a positive test ELISA Western Blot or otherwise -
So i am sure you understand my curiosity and anxiety over the merits of these tests.
Had five Quest Labs Western blots and one by Enzo (Dr C's lab of choice) over the course of a year without a hit - except for one IGG band once (Enzo) and that band i have discovered is potentially cross reactive with a few viral things (see the excellent "unraveling the
Western Blot" post). Even paid out of pocket for the Central Florida Research test - which for a while seemed like it was gonna
be a big thing as Lyme testing goes (also negative)