Doc Talk v. 3

I have 2 Lyme doctors now: one in town and one out of town. The doctor here is the one who tested me and diagnosed Lyme disease about 4 years ago. I have been in treatment since. I see my doctor in town about every 3 months.

I began seeing my out of town doctor (OT) a little over a year ago. Selecting this doctor was based on the fact that the office accepts insurance and also based on recommendations from a Facebook Lyme group I frequent. Getting to these appointments involve a 3+ hour drive one way and a stayover if at all possible. This doctor likes to see me every 4 months.

However, my OT doctor will not be accepting insurance anymore at the beginning of March. Visit costs will start at $300 and up. My insurance will not reimburse me at all for these visits. So, now what? Treatment with this doctor has entailed using herbal drops and supplements. Treatment has also focused on a more holistic approach at least for me since now I am on the chronic stage of this disease.  Visits last usually a solid 30 minutes. OT doctor has caught more issues with my thyroid and added medication that seems to be helping with energy levels. OT doctor’s approach is multi-system, an approach I think is in my best interest.

My doctor in town (let’s go with IT from here) continues to accept insurance. And while I have much respect for my IT doctor, the past few years, I have made little progress in my recovery with this doctor. Appointments require my taking a day off of work (it takes a good 90 minutes to just get to the office). I no longer have any sick days which means I am docked pay. I used up all of my extensive bank in the past 4 years. Then, I may get 8-10 minutes with the doctor, or, like this last time, with the PA. Now, don’t get me wrong; the PA is very sweet but not on top of what is going on with my treatment. Yes. I have a file about 8-10 inches thick, but again, they spend a like 8-10 minutes total on a visit with a patient.

I hate to complain. I know that I am really LUCKY, not only to have insurance, but to have a doctor closer to me who takes insurance. But then again, if I am not really making any progress……I just don’t know. I want more from my IT doctor, more information, a more detailed treatment plan, more time with the doctor at my appointments. Yet, this is not going to happen.

Staying with the OT doctor is going to be pretty costly. None of the herbal drops nor supplements are covered by insurance (the additional thyroid med is not that is it). I’ve managed to pay for these in the past but if now there is another $300+ per visit…you get the picture. Of course, bottom line is improving my health.

I have one more appointment with OT doctor before the change to no insurance so I am hoping I can get some more solid information from OT about possible costs, etc. if I continue to be a patient. I want to stay in treatment with OT. We’ll see.

At this point in the game, my case of Lyme is chronic. There is no way around it.  Of course if I had my choice with no worries about money (as if any of us have this option!), I would want to see Dr. Horowitz and/or Dr. Jemsek in D.C. For either doctors (if I could even get in – some wait 1-2 years for appointment) it would then cost thousands for treatment.  It is criminal that Lyme patients do not get the needed nor correct care in this country.

On that note, friends, I am off. Time for a nap. Best to you and yours – B

Mycoplasma, Anyone?

The Challenge!
The Challenge!

So, at my doctor visit a few weeks ago, we decided to retest for co-infections. I was tested in March 2014, along with the test for Lyme disease. At that point no other infections were showing. Now, two years later, and I am still feeling like every day is a real challenge as far as symptoms go. Dr Horowitz, in his book, Why Can’t I Get Better? , examines the possibilities of other infections going on along with the Lyme. A multisystemic illness as well as approach to treatment.

We decided to  check again for the big 3, Bartonella, Babessia, and Ehrlichia.  We also decided that we check for Candida, Mycoplasma, and the MTHFR mutation. I brought these up based on Dr. Horowitz’s book. Now, in September, my doctor wanted to do a through genetic DNA test. This test would give us info on several possible MTHFR mutations, it would reveal how well I process certain medications, and it would help us know what medications, both antibiotics and pain meds, are best for me. But the insurance denied such shenanigans and with my looming deductible of like $1,200 to meet first, well I had to pass on that test, unfortunately. At least for now.

Anyway, back to this most recent visit and blood work. Results are in: none of the Big 3 were positive. No Candida issues. Cool! But, I do have Mycoplasma, reactivated EBV, and an MTHFR mutation that hinders my processing of B vitamins. Ok, ok.

I won’t lie. This information freaks me out a bit. Actually, a lot. I mean I know many people are dealing with co-infections. It’s just damn. Lyme bacteria is complex and intelligent enough on its own. Now, add Mycoplasma pneumoniae to the mix. This is the bacteria that causes walking pneumonia. And then the EBV is active, the virus that causes mononucleosis. I’m basically hosting a crazy party in my body, and I didn’t even get an invite. Excuse Me?!?

Now what? Honestly, I’m not sure yet. My doctor has this extremely annoying system where you go for your visit, then do your blood work, then wait 6-8 weeks for a follow-up appointment wherein we discuss the lab work from   2 months ago. Makes really no sense to me but then again, I’m no doctor. What I am trying to say is, she didn’t change my meds for now and I won’t see her until April. Then, I guess we talk about the co-infections.

However, a dear friend sent me Healing Lyme Disease and Coinfections by Stephen Buhner. He goes into great depth about all of the mycoplasmas of which there are several, and how to treat verbally. Some of what he goes through is the details about how this bacteria works on cells, etc. This part is very detailed and I am pretty lost. From what I have read, this bacteria is also extremely deft and intelligent as well. He states that the coinfections work synergistically. Again, WTF?!?

I’m trying to take this all in stride, research as much as possible, and understand what all of this means. Please wish me luck as I will most definitely need it.

Anyone else dealing with a Mycoplasma infection? And if so, how is it going and what is the protocol for treatment?

Please check out http://lymediseasechallenge.org   Today, March 1st, the Challenge Begins!!

Hope this finds you pain free and Happy. -B