My Treatment - Paying It forward

My journey. I first started on this forum. Lots of help and support from people on here. At a certain point you will need to take charge yourself. I wish I had known what I know now, 10 years ago. I live in NJ. I truly hope this helps someone.

Here we go. Feel free to email me with any questions. dphjr69_at_gmail.com

All symptoms in head on left side in same location (inflammation, brain fog, mind not sharp, malaise)
Occasional left leg twitching later in day if symptoms acting up
Any exertion exacerbates symptoms

June 2011 – ER for Headache; could not figure out why

August 2011 – Positive Lyme test, started Doxy

November 2011 – ID Doc, stopped abx for two weeks?

End of November 2011 – started doxy again

January 2012 – LLMD in Howell, NJ; doubled doxy dose; going to “fine tune” me

February – Sept 2012 – Took Doxy, Bactrim (ALLERGIC), Tindamax, Zithro abx cocktails

July 2012 – Started with NP protocol as no results seen with LLMD

October 2012 – stopped abx altogether

November 2012 – MRI of brain and lumbar puncture negative for lyme

December 2012 – felt better, but not 100%; neck down felt great

January 2013 – saw osteopath, no help

January – May 2013 – status quo just dealing with it

June 2013 – January 2014 – CFS with idiot Dr. in NYC; took hepapressin shots

February 2014 – May 2014 – little treatment; saw every doctor we can think of…autoimmune at Tufts, headache at Jefferson, neurosurgeon, TMJ and probably more…some days good, most days not so good

September 2014 - Started seeing LLMD in West Caldwell, NJ. Known to be super aggressive. PICC line put in. IV Doxy for 6 months. Absolutely brutal and dark time. Had to stop work for 6 months. Lyme and Bartonella correctly diagnosed.

June 2015 - end of 2017 - Back at work; still on the abx; Tindamax was the worst by far (I call it the chemo of infectious diseases); but eventually not making any significant progress; LLMD seemed stuck as to what to do; seemed to me to be just throwing together abx cocktails to see if they worked. She brought me back, but couldn't get me over the hump. she was also a one -person show and I was concerned about seeing her long-term as she seemed to 'wing it' from time to time.

2018 - current - Under the care of who I believe to be the best LLMD out there in Wilton, CT. We've been pulsing and I'm now at a stage where I go 8 weeks off, 3 weeks on. And my life is back! The only thing I cannot do now is run. I swim and bike so that's fine by me. Running for whatever reason just seems to exacerbate the symptoms in my head.

What you will likely experience besides the Lyme itself and how I dealt with it:

Depression - absolutely imperative to get on some kind of anti-depressant. This is why they were invented. I am now only on a very small dosage. You can always back off. But this is absolutely key to dealing with all of the stress and dark times.

Anxiety - CBD oil takes care of this. Make sure you get a good one. No THC so no high.

Family - My support group for whom I owe my life as there were very dark days/nights. You will need this. I still have a couple people I met on this board that I'm in touch with from time to time.

Diary - While I am scared to go back and see what I wrote, this was very therapeutic for me.

Diet - Eat as clean as possible

Probiotic - buy the best you can and change them every few cycles.

Natural vs ABX treatment - IMHO you will go nuts with the all natural approach. It may work for some, but you will need to treat with abx to get ahead of this dreadful disease.

Overall the goal of my current (and best) LLMD is to get me to 95%. I would say that I'm there. Yes there are days when I feel like crap but that's usually me overdoing exercise (I'm 52).

If this helps one person, I will be very happy as I received a lot of help and advise on this board early on.

Be well.

I'd also like to know what ABX you were pulsing with doc in Wilton, CT. Thanks for sharing your story. Always good to hear good news.

And it sounds like the IV ABX helped you to some degree?

I'm pulsing Dr. J's Lyme/Babs protocol now.

Post Edited (ChristianWithLyme) : 4/19/2021 2:31:21 PM (GMT-6)

Do you have symptoms on right side at all?

magoo2 said...
Do you have symptoms on right side at all?

I do not.

However when symptoms flare, I will have tingling across my forehead (like now...pulse starts in 2 days)