I had my most recent appointment with my doctor on the 28th of May, 2013.  It ended up being a very productive appointment, with some unexpected results.

We got back the results of the MRI of my brain, which is mostly clean.  I do not have any lesions, which is fantastic news.

The results of the blood tests showed that my thyroid functions are slightly off from normal.  Initially, my doctor was planning to put me on a low dose of some thyroid medication to bring it back to normal, but I will not be able to do that therapy because those medications would interact poorly with other more important medications I will be starting on in the near future.

The B-12 shots are making a phenomenal difference in my energy levels.  Before starting the shots, I was hard pressed to stand on my feet for more than five minutes at a stretch.  I am now capable of cooking simple meals for myself without too much trouble, and getting around my home, as well as occasionally working on art and sewing projects bit by bit.  It has also cleared up the sleep disturbance, so I’ve been able to get to sleep at a reasonable hour.

In worsening symptoms, I have had trouble with shortness of breath and my doctor had wanted me to start using oxygen at night when I sleep.  Unfortunately, that would cost upwards of $1800 per month (I still don’t have insurance), so it’s just not possible.  I’ve also been plagued by worsening constant headaches, to the point that for the past couple weeks it’s been competing with my joint aches for the position of worst pain my body, and from time to time it is winning.

In really, really fantastic news, I will be starting on the antibiotic treatment in the near future, and I will NOT be needing to take them intravenously.  Instead, I’ll be taking a couple different super-heavy oral antibiotics, but still for the 6-18 month period.  That means the total expenses will be far less than expected (original expectation was between $40,000 and $60,000 total), so I don’t have to wait until I have insurance and am on disability before starting antibiotic treatment.  I’m also super happy that I won’t have to maintain a PIV line.

The reason for the change of medication will take a little explaining.  As it turns out, I don’t have lyme disease.  Instead, the Anaplasma Phagocytophilum that I thought was a co-infection is actually my primary infection.  It is just as serious of an illness as lyme disease, carries an almost identical set of symptoms, and is also transmitted by tick bite, but the antibiotics that work on lyme are not as effective on the anaplasma.  Thankfully, the antibiotics that are effective on Anaplasma are less expensive, and not undergoing a shortage.

The reason for the confusion is the difficulty of testing for lyme disease, and the fact that symptomatically it looks like I have the much more well known Lyme Disease.  The vast majority of the tests available for Lyme are extremely unreliable, so a negative result can very easily be a false negative, making it impossible to tell for certain just from the test if the negative is true or not.  There is, however, one test that is accurate, and I am frankly baffled that the lyme advocacy groups are not lit up recommending that people take the reliable blood culture test.  It’s one downside is that it takes up to three months for the results to come back, because you must give the culture time to fully develop and show if any bacteria are present.  I’d say the nearly $600 price tag was also a downside, but compared to the uninsured prices I’ve been charged for some other much faster tests, I’d say it’s not that bad.

If you are interested in reading more about the Lyme Blood Culture Test and why it’s not being made widely available (politics, again, this time with the FDA approval process), I recommend this article on Medscape.

My understanding of Anaplasma Phagocytophilum is very rudimentary.  If I understand correctly, it carries nearly identical symptoms to Lyme because it causes a similar inflammation/histamine/auto-immune reaction in the body.  It also belongs to a family of “bacteria” that lack a cell wall, making it very resistant to antibiotics, which primarily work by puncturing the bacterial cell wall and causing it to explode.  No cell wall means nothing to puncture.  Instead of relying on it’s own outer cell wall, the Anaplasma resides within the host’s white blood cells and the blood stream.

Unlike with Lyme Disease, the CDC’s web site actually has some good, concise information and offers a great deal of advice that they should also be giving to potential lyme victims.  They also admit at the top of the page that anaplasmosis is potentially fatal.  http://www.cdc.gov/anaplasmosis/symptoms/

And if you would like a lot of technical information, there is also this article on MedScape: http://www.medscape.com/viewarticle/766614_2

Anaplasma can carry neurological symptoms if I understand it correctly, but it is much more likely that the majority of the neurological symptoms I am experiencing are a result of the reactivation of the Herpes 6.  “Human Herpesvirus 6 (HHV-6) is a set of two closely related herpes viruses known as HHV-6A and HHV-6B that infect nearly all human beings, typically before the age of two. … Like the other herpesviruses—Epstein Barr virus, varicella zoster virus, etc—HHV-6 establishes life-long latency and can become reactivated later in life. … Reactivation can occur in locations throughout the body, including the brain, lungs, heart, kidney and gastrointestinal tract. In some cases, HHV-6 reactivation in the brain tissue can cause cognitive dysfunction, permanent disability and death.” – From HHV-6 Foundation: http://hhv-6foundation.org/what-is-hhv-6

When I left my doctor’s appointment, we had planned firmly to start the antibiotics at the end of June, after I had time to start taking a few additional supplements and medications to help my body handle the long-term antibiotics.  Sadly, at this time I don’t know exactly when I will start, though I am still hoping for a start in the next couple months.  Diana and I are renting a house, where we had intended to stay for the entire duration of her enrollment at UNLV as a PhD student, most likely 6-8 years.  We’ve only been here for one year, and the owner of the house has decided to sell and no one interested in buying an investment property is looking at it, so we have to move.  At this stage in my health I am of very limited help, and we can’t afford the expense, but we have no choice in the matter.  If we delay, we risk being kicked out while I’m in the middle of herx reactions or too sick from the antibiotics to help.  The only bright spot is that we can take time to find a place that will suit our needs and is only one story.  There are some days where the stair case in our home is my worst enemy.  As soon as we are moved, I’ll order all the new medications and supplements, including the antibiotics, and I should be starting 3-4 weeks later.