Lyme Disease Support Group

I saw my LLMD, Dr. G, for the second time last week to discuss the test results that came in and the treatment I'm starting. Pretty much these are the three highlights of the results:

I had a positive result for the IgG P41 band of the Western Blot test. Meaning I have or have had some sort of spirochete infection, if I understand it correctly.

I also had a positive result for WA1, which is apparently a piroplasm similar to Babesia. My LLMD told me that you pretty much only get that if you have Lyme.

I also found out that I'm vitamin D deficient, which is weird considering I've been taking a multivitamin for years that has 175% of the daily recommended requirement for vitamin D.

I've had a magnesium deficiency in the past, which I've read is something that Lyme can cause, so I'm wondering if it's the same case with vitamin D?

I've actually begun treatment already and am into the second week. For now I'm doing 600mg of oral dioxycycline hyclate a day and I'm also taking some artemisinin for the WA1. In the middle of the day I'm taking a probiotic.

I'm also taking like 10 different vitamins and supplements including vitamin D, magnesium, and b-complex among others.

My LLMD gave me a copy of "Advanced Topics in Lyme Disease" which he refers to as "The Lyme Bible".

I'm doing a lot better already, though I of course still have good days and bad days. The neurological problems I was having have probably seen the most improvement so far.

I just want to say that these forums, the Internet in general, and the LLMD I'm seeing (thanks Bettyg) have basically saved my life. The personal stories were some of the biggest help, since it's much easier to see similarities to what you're going through in those than in just lists of symptoms.

I'll be honest. Just a few months ago, before I discovered all this information on Lyme and had no idea what was wrong with me, I was seriously considering suicide as the only remaining option. I mean it becomes almost rational to want to do that after dealing with symptoms for 8+ years that only get progressively worse as time goes by, with doctor after doctor telling you there's nothing they can do for you.

I actually like to think that there is a silver lining to this horrible disease.

This forum saved my life, too.

Carol is so right, a lifetime of good eating and living. Wellness is a lifelong process.

I think mag helps absorb vitamin D? Maybe if you were deficient, one caused the other. I'd have to check on that one ... I was deficient in both, I think it's pretty common.

My LLMD put me on 2000 IUs daily of D3 to start, plus what was in my multi, to get levels up. Now I'm on 1000 IUs/day plus the multi.

And I have switched from magnesium oxide to magnesium citrate (or any one that ends with -ate) - they absorb better. Oxides are in most of the multis ... Definitely noticed a difference! There is liquid mag, as well.

I think some multis are garbage. I probably wasted a lot of money on them over the years ...

Hope you continue to see more improvement.

toothfairy55, I've already started exercising and eating better, something I probably wouldn't have been motivated to bother with without the Lyme diagnosis, so I guess that is one positive thing.

zoemajik, I've also read that a magnesium deficiency can trigger a potassium deficiency so that would make sense if magnesium levels affect vitamin D levels.

I've read that magnesium oxide has the worst absorption of all the magnesium supplements. I've been taking magnesium chloride (slo-mag) but it's expensive for the amount you get so I just ordered 120 caps of magnesium taurate (ends in ate) and will see how that goes.

I actually just had a regular checkup with my main doctor and to keep him in the loop I showed him my test results which showed the positive western blot band and the co-infection. Even though I don't think you could even get my co-infection without Lyme, and even though I've got a million symptoms, he still remains unconvinced.

He said he'd be convinced if I have 5 or more bands in the western blot come back as positive but I mean come on. I told him with as late stage as this is how many antibodies do you really expect my body to be producing?

So pretty much I regret even giving him the update. I'm done being told by doctors that I'm not sick. If one of these doctors had to feel the way I was feeling at my worst for even a day they'd take it more seriously.

On the other hand I saw my heart doctor recently and let him know about the Lyme diagnosis and how I believe Lyme to be the cause of all of my weird heart issues and chest pains. I told him that I thought I was first infected when I had pericarditis.

He told me he didn't think Lyme could cause pericarditis, but he went to look it up in a medical database and was embarrassed when it said yes it can. So at least he believes me now and should be more aware of Lyme.

The crazy thing is I live in Williamsburg, VA which my LLMD told me is the Lyme capital of the state (there are a lot of deer around here). So why are there no doctors around here who know a damn thing about it?

Post edited by: someone123459, at: 06/24/2010 04:06 PM

Post edited by: someone123459, at: 06/24/2010 04:28 PM

In a short summary.... the believe the IDSA Guidelines

In our case, even what you look up could be WAY off the mark, but still ...

And your primary ...

>>He said he'd be convinced if I have 5 or more bands in the western blot come back as positive but I mean come on.>>

That sounds like "conditioning" to me. Just repeating something he's heard or memorized - lol, it doesn't even make sense, does it? A lyme-specific band is a lyme-specific band. Who cares if you have 1 or 5 or any if you're symptomatic?

The majority of doctors get on my nerves ....