New member introduction

Hi all, new member here from Canada (Ont./Que. border about 60 mi. north of NY State). I'm glad to have found this site. I have been reading many threads before posting, and I first want to say that my thoughts are with those of you who are going through so much difficulty.

Please bear with my long story...

My wife and I have lived in a rural environment for 30+ years and I am outdoors a lot spring/summer/fall doing yard work (there are deer galore). In August 2009, I awoke one morning with my right ear quite swollen, red and burning. It appeared like 'acute perichondritis' (affects the outer ear, though I didn't know of that condition at the time to be able to explain to doctors what it looked like). It went away after about three weeks, but a large hard cartilage nodule remains on my pinna (not really noticeable). I figured it was the result of a bug bite of some kind, but didn't give it much more thought. I thought much later that it could've been the site of a tick bite.

I had been very healthy all of my 53 years at that point, but two months later in October, I became extremely sick for two months, could not work for the first time in my life, and had no idea what was going on. I was experiencing extreme pressure in my head (for lack of knowing how else to describe such a strange, intense condition), with excruciating/debilitating episodes (flare-ups) occurring many times a day. I thought I had a brain tumor or something else serious. I was thoroughly tested for just about everything, including head CD Scan and an ELISA Lyme test (negative), but no problems could be found. Of course, at one point I was told that it must've been anxiety, but given what I was experiencing, there was no way (and never had any form of anxiety before and still don't).

The worst of it lasted for two months and then subsided, but has never gone away. As time has passed, I have had many symptoms including 'moving' arthritis and fluctuating fatigue, but what I consistently endure is what feels like a bad head flu (full head fullness) that includes a feeling that the eustachian tube (sometimes extending into my throat) is always inflamed. I was referred to an ENT in 2011 and late that year, he performed surgery for deviated septum that he thought might've been causing my problems. That operation did nothing and was likely unnecessary.

In early 2012, I decided to pursue Lyme Disease and managed to convince my family doctor to support me in having testing done by IGeneX. Below are my results from July 2012.

IgM Report (negatives deleted):
IGeneX: Positive CDC/NYS: Negative
18 kDa. ++
23-25 kDa. IND
31 kDa. +
34 kDa. IND
41 kDa. ++
58 kDa. +
83-93 kDa. IND

IgG Report (negatives deleted):
IGeneX: Negative CDC/NYS: Negative
31 kDa. IND
41 kDa. +

Multiplex B. Burgdorferi - Both Serum & Whole Blood
Genomic - B Burgdorferi - Negative
Plasmid - B Burgdorferi - Negative

Once I received the results, both my GP and ENT reviewed them and believed I didn't have LD. So, I communicated with the president of CanLyme who referred me to an LLMD in NY, who I managed to see in Dec. 2012. The assessment of my IGeneX results was that I do, in fact, have LD. Below are the meds prescribed in Dec. 2012:

- Clarithromycin 500mg
- Doxycycline 100mg
- Hydroxycloroquine 200mg
- Metronidazole 250mg (2 wks on 2 wks. off, repeat)
- Nystatin (a probiotic)

I bought them then, but have not taken because I was waiting for a second opinion from an Internal Medicine specialist that my GP referred me to in Feb. 2013, soon after I met with the LLMD. The IM doctor felt that the LLMDs regimen was too aggressive. Although he had initially said he would treat me for Lyme, that was before he had me retested locally and received the results, after which his view changed to thinking that I "had" LD, and am now left with CFS. I (and my wife) don't agree...my symptoms just don't match. I have recently asked my GP to refer me back to the IM for Lyme treatment.

I read a post on this forum by member "Pirouette" (thank you!) who quoted a doctor who said "IgM Antibodies in Lyme can remain positive indefinitely. If they do, it means you have a living germ in you." Based on the explanation my IM doc doesn't even understand this, so I don't know if he'll still support me. We'll see. If not, given that my symptoms are ever-there but not that extreme/debilitating, mostly fluctuating fatigue and head-like flu that can get BAD for brief periods of time when I experience what seem like flare-ups, I'm not sure that I want to follow the aggressive regimen prescribed by the LLMD.

Based on my symptoms, IGeneX results and my new/enhanced understanding about LD thanks to this site, I do believe I have LD. I just have to continue pursuing it, hopefully to be treated with a more moderate approach.

Does anyone feel the LLMD approach is too aggressive?

Thanks for reading.

Post Edited (KeyLymePie) : 5/28/2014 8:31:46 PM (GMT-6)

Hi key Lyme pie.

No I don't think that regimen is too aggressive at all. Lyme regimens need to be aggressive and combining antibiotics or combining them with certain herbs or natural therapies is essential.

Doxy + biaxin + Plaquenil and then metronidazole for the cyst form.

Your nystatin is not a probiotic though. That is a powder in a capsule that kills yeasts. Yeast overgrowth is a result of taking the combination antibiotics. It is not absorbed through the intestines at all. You will also want to take a good probiotic away from your antibiotics.

The Plaquenil is an excellent support drug that blocks some enzymes in the Borrelia, alkalizes the inside of your cells (Lyme makes the body acidic), modulates immune response, and makes the doxycycline and clarithromycin work much better intracellularly. It's actually pretty mild on your system.

The only thing I would think is do the doxy + biaxin + Plaquenil FIRST... Then when you are done herxing and feel plateaued you can add in the metronidazole. You might even want to start with doxy and Plaquenil, then go through the die off, then add in the biaxin, wait for the die off to become bareable, and then add in the metronidazole.

Hello KeyLime,

The approach your doc suggested sounds reasonable to me. Are you eating a healthy diet, though? Cutting out gluten, sugars, processed foods? Do you have a plan for detoxing? I would encourage you to begin treatment asap, because it surely does look and sound like you have LD. Were you tested for coinfections as well? Please don't begin taking meds until/unless you have the support of a knowledgeable health care provider, however.