Mom diagnosed with ALS, being treated for Lyme (continuation)

Hi Kari,

Glad my story can help in some way.

I understand your sisters point of view completely. For me the coinfection tests were validation because I don't think there are many false positives on those tests (but lots of false negatives). So those being positive for me was the validation I needed. I suppose if I didn't get those results I would still be doubting what I'm actually treating, which is unfortunate that happens to a lot of people. So unfortunately it doesn't sound like you will get that validation. I didn't read the entire initial thread, just your first post so I must have missed you mentioning the negative coinfection tests.

Anyway, I'm surprised the LLMD expects such immediate improvement. I haven't heard anyone here or otherwise say they've improved with a months worth of treatment unless they were just bitten in the prior couple of weeks or something. Usually people are complaining about getting worse, at least at the outset. I didn't see improvement until months in and even then it wasn't great. Breathing symptoms definitely worsened at the outset of treatment for a few months. And I'm not healed 18 months after my initial symptoms either. I also wasn't nearly as bad as your mom so I'm not sure if she should be seeing some improvement or not this early. I almost question the experience of the LLMD, but I'm not a doctor either.

Not sure what she's being prescribed for meds. I'm not as bad as her and I'm on a serious regimen of antibiotics / anti-malarias as I'm not taking chances. Here's what I'm (currently) taking:

Minocycline - 100mg, 2xday
Clindamycin - 900 mg, 2xday, 3 days/week
Plaquenil - 200mg, 2xday
Probenecid - 500mg, 2xday
Malarone - 200mg, 2xday
Bactrim - 1 tab, 2xday
Nystatin - 2 tabs, 2xday

I have to take handfuls of probiotics so I don't kill my gut. I have taken probably another 10-15 different abx over the past year and I'm about to start Bicillin injections this month and I do BVT @10 stings 3x a week. To be honest the biggest improvement came after I was on the full dosage of BVT and doing sauna. But I feel things regressing and then improving on a cyclic pattern even now.

I'm 100% not trying to give anyone false hope. I just told my story exactly as it happened hoping you and your mom might find some positive light in it. I would like at the very least that the worst year in my life can help someone else not go through it for as long or as bad if possible.

You're probably getting overwhelmed with information but stay the course with abx and start looking into BVT. There are some facebook groups such as "Bee Venom Therapy for Lyme Disease" and probably once a week or 2 there is someone new in those groups that was ALS diagnosed and along the same path as you. If she chooses to do BVT I would keep her on the abx, but there are mixed opinions on that. There is good research for BVT helping straight ALS patients as well as those with Lyme so it's really a good path either way.

Best wishes...

I would have to go back to my original bloodwork but I'm pretty sure 23 was one of the ones I had and my doctor said it screams Lyme. I had a few other bands as well and I think there are a few other things that can possibly overlap those, but 23 is a 'borrelia-specific' band so to speak. Also I believe my doctor had sent the bartonella test to 1 lab and the babesia test to a different lab, and they were both different than Igenex for Lyme testing. Some labs have better processes for different diseases and if this LLMD just processed everything through a 'Quest Labs' or something similar it might not be the best route.

It's worth checking into other LLMDs - they are too expensive to not be satisfied that they are at least taking you down the right path or being thorough enough.

It always makes me wonder how many mutations of Lyme & Co. could be out there that these terrible old tests can't make heads or tails of anway. Seems like nothing we throw at them can beat them and it makes me think they've become some antibiotic-resistant mutations to the max.

We sent all of the information (all prior tests, medical history, etc) for when she was diagnosed with ALS. This included all of the symptoms, etc that she has. The day of the apt, his assistant asked several "symptoms" off of a list, many of which my mom had.

At that point he "talked" to us. He said it is very difficult to get away from the "ALS" diagnosis once you have it, but he would do treatment to see if it helps. He was not very personable. We gave him a copy of the western blot as well. He said 'she does have things that can be caused by Lyme".

So basically, he's treating her and if he sees enough improvement, he will give her that diagnosis. Idk. Very odd I guess.

He's got her on Malarone 250 mg 2 times/day and doxycycline 100 mg 2 times/day.


-Kari

BlueLyme,

Sorry - forgot to respond to your earlier question. Yes - I'm on the full 10 stings @ 3x a week. I've been at that since about November. I really felt a lot of things clear up since that time. I mainly do the spine stings but I do some satellite stings occasionally when needed too - usually in my legs, feet and sometimes hands where symptoms are the worst.

I was a complete skeptic of BVT for months on end until I started to feel desperate and then gave it a shot. It took a few months before I felt any progress. The last couple of months are the best I've had in the last 18 months. Glad to hear it's worked out for you as well.

It sounds like an absolutely ridiculous treatment but it's got some good science behind it, kills Lyme under microscope, been practiced in Asia for thousands of years. I don't really tell many people though as I know exactly what those people would be thinking of me. The same thing I would have thought a year or 2 ago if someone told me they were doing it...

Girlie-that's exactly my worry. He said there's a few different treatments he wants to try - basically a month at a time for each. And if it works, great...if not, at least we tried. Very frustrating.

-Kari

I'm leaning towards the new LLMD option too. I want to give this guy a chance but he doesn't even seem to care about the actual case itself. Like he's basically just treating my mom like he would any other Lyme case, no specifics based on my moms needs.

I'm still annoyed that he told us band 23 isn't specific. Any idea why he would say this? It says on his website he is the President of ILADS, which I would think would make him one of the best LLMD's around, but I'm really not sure at this point.

-Kari

The only reason a LLMD would say that band 23 is not specific is if they don't know enough yet.

I did want to say something else about the need to show improvement before getting the Lyme diagnosis. I was one that herxed for a full 12 months - the whole time I was using pharma abx. So for a doctor of any kind to think that we have to wait for improvements to have a diagnosis is not one I would stick with. I learned the hard way as the herxing got very severe. Don't wait, start checking into other LLMD's/options now so that you have a bit of time to find a new one - should you need it.

Another thing is that a really good and well respected LLMD told me that I had nearly every tick-borne infection there was - and regular labs never did come back with positives until I had had a full 12 months of treatment as well - then I was fully CDC positive for Lyme and Rocky Mountain Spotted Fever - I had the symptoms of RMSF when I was 7 years old - over 37 years prior to the testing. Chronic Lyme symptoms set in by the age of 9 for me.