low dose naltrexone

[Marlene]

Yeah, it's difficult to figure out what finally did the trick. When things improved for John, we let everyone and everything take credit for his recovery. It really didn't matter as long as it continued.

I do think the C-diff is a big factor. And then, since LDN is the most recent addition, it's suspect also.

In any case, I hope it continues!!!!!

[S001]

Great to know some or all of the combination is working for you!

[Lbrown]

Well, looks like I got too excited too soon. Here are my counts from Thursday:

HGB 87, WBC 1.4, Neut 0.8, Plate 171, Lymph 0.4, Creat 134

My question is - why isn't the tacrolimus DOING anything? I mean, it costs enough! I've had bad sinuses since last week so have been feeling awful. I was sick with a severe headache all weekend. I started using a nasal rinse which seems to have helped, I was back to work and comfortable today. It would have been nice to not have been sick on Sat though, looks like it was the last nice day we're going to get. I was hoping to go see my horse. Oh well. Windchill tonight is -26C. Needless to say I don't do any outdoor activity at that temperature. I'd need better HGB for that!

Deb

[Hopeful]

Hi Deb,

A virus can knock down your ANC and HGB. So hopefully, that's what it is. Your platelets look great!

Try to look at your trends month-to-month and not week-to-week.

[Lbrown]

Yeah. I seem to have a lot of viruses then. Ha ha.

I am seeing my regular hematologist today, I will ask about the tacrolimus not doing anything. We just increased the dose to 18 mg a day, this stuff is mega expensive even with insurance.

Deb

[Lbrown]

Counts today:

HGB 99, WBC 1.6, ANC 0.9, Plate 190, Lymph 0.5, Creat 115
tacro: 9.4 -- FINALLY!

My hematologist told me on Tues that the therapeutic level for tacro is 7 - 20 and I've barely made it to 7 once or twice. I am now taking 18 mg a day (9mg twice a day). The worst effect is severe headache when I change the dose for a few days.

It sure would be nice for my HGB to stabilize.

I still do feel better on the LDN.

Anyway, quittin' time.

Deb

[Lbrown]

Today I quit the tacrolimus. My counts are no better and I'm still needing transfusions. The LDN takes the edge off the most horrible symptoms and I've been taking 4.5 mg a day since Nov.

In early Jan I had a blip in my counts, but I don't know why.

- I had reduced my dose of olmesartan to 20 mg 4x a day down from 40 mg 4x a day. I take it for insomnia and chronic pain and I felt so bad after 5 days I had to increase it again.

- I had blood tests Jan 5:
HGB 83, WBC 1.5, Neut 1.0, Plat 100, Lymph 0.4, Creat 124

- BMB and more blood tests Jan 7:
HGB 88, WBC 2.5

The dr said it was probably just the machine at the hospital and you can't get excited about a 5 pt increase. When I thought about it though, it was not only a 5 point increase, it should have also been a 4 point decrease, so my HGB in 2 days was 9 points higher than expected. This was the first blip in my HGB in 16 months.

I just did an experiment of cutting down more slowly on olmesartan to see if the tacro would kick in. My count was no better, and I felt like I had been hit by a bus. This morning I decided to ditch the tacro and go back on my regular dose of olmesartan. I mean, if I have pain and can't sleep, how can I drag myself through work each day?

Just posting this now, I am wondering if maybe it's the LDN? My lymph counts are always around 0.5 but my WBC seems to be varying quite a bit. Platelets too, all over the map.

I also wonder if you can be dehydrated enough to gain 9 points in HGB in 2 days? I was taking tylenol sinus at the time.

The new dr has given me a prescription for Neoral cyclosporine. I took sandoz before and had all kinds of horrible side effects. Does anyone have experience with both types of cyclo? I'm really not looking forward to taking any kind of cyclo again.

Taking it though is a test to see if it works, and if not, then we might talk about autologous SCT. I have a feeling if it does work, then they will just want me to take it forever and they'll never figure out the root cause of this.

Deb

[Marlene]

I hope you see some positive changes this month while you take a break. I'm glad the LDN provides some relief.

Marlene

[Lbrown]

OMG!

I quit tacrolimus on Saturday, Jan 29. I was taking 18mg a day.

Counts Jan 28 (which made me fed up enough to quit tacro and restore olmesartan to full dose - 40mg 4x a day, plus 100mg mino every 48 hrs plus 4.5 mg LDN a day):
HGB 91, WBC 1.9, Neut 1.1, Plate 123, Creat 160

Counts Feb 3:
HGB 90, WBC 1.9, Neut 1.4, Plate 177, Creat 109, Lymph 0.4

(My HGB usually drops 16 points a week)

I have a tfx booked for Saturday at 7:30am, she is asking the doctor if I should still go. I have until end of day tomorrow to cancel.

Do you think I should go, or just see what will happen? (Personally I would like to feel a bit better, but it would also be nice to see if my count drops or increases - dilemmas)

Maybe it's the LDN???

I have already emailed a nurse and the dr who prescribed the LDN.

Deb

[Marlene]

What's your usual HGB transfusion goal? And, if you skip Saturday, when will you get your next CBC? Ask them to run your retic % and Absolute retic count to see what's being made. Those numbers do look promising.

John's intervals between transfusion spaced out from every 3 days to one week, then to two weeks, then to three weeks before he was completely TX free.

[Lbrown]

I get tested every week and have a tfx every 2 weeks. Once in awhile I need a 3rd unit. Because I work, my tfx level is usually 90.

I've had no letup in the amount of time between transfusions in 15 months.

[Marlene]

Well then....I think I would go for the transfusion if it will make you feel better and then see how things hold the following week.

[Lbrown]

I think I will get them to reschedule the tfx for the following week and see what happens. My first inclination was to go ahead with the tfx, but then when I think about how sick to death I am of that whole thing, a day off sounds mighty good. I'm gonna go ride my horse and meet a friend for lunch!

Deb

[Lbrown]

So I survived riding my horse and having lunch with a friend on Saturday.

My horse was FULL of energy and only wanted to canter through the snow, but at least he didn't buck this week. I did 3 laps and was done in, had to quit. It was fun, but I felt like I overdid it. By the time I reached my friend's house, I felt better. I was quite out of breath all day, even just getting dressed was a chore, and my BP was very low (< 80/50, it was 64/46 at one point, probably rebound from quitting the tacro, when it had been around 100/60).

Felt HORRIBLE on Sunday. Wondering how I'm going to make it through the week. My husband reminded me that now that I'm off the immune suppressant, maybe the Marshall Protocol is kicking in to make me feel worse.

The theory behind that is that intracellular bacteria hijack your immune system through the VDR, and olmesartan reactivates the VDR, which makes your innate immune system stronger which makes you kill off more intracellular bacteria, causing endotoxin & temporary exacerbation of symptoms (like when you have the flu, or a cold). I had exacerbation of symptoms all right. When I took a minocycline last night, 3 hours later I felt better. My pulse was slower and BP slightly higher.

So either my HGB dropped like a lead balloon since Thursday, or I'm getting herxheimer reactions from the MP and just FEEL worse. LDN is not recommended by the MP crowd because they say it prevents the herxheimer reactions, but I am not finding that at all!

This is shaping up to be quite the roller coaster of a week, and I feel psycho trying to explain in my mind why my count didn't drop but why I feel so bad. Ugh!

Deb

[Lbrown]

Posted here for reference's sake: http://www.nature.com/cmi/journal/va...mi201077a.html

(Note - this is the treatment I have been doing since Sept 2009, I can't yet say if it works or not)

[Marlene]

Glad you made it through the weekend. It will be interesting to see where your counts are this week.

[Lbrown]

HGB yesterday was 73, down 17 points. WBC was 2, Platelets 170.

I just have no idea... obviously I can't cancel my tfx tomorrow. I did feel better this week than last week when my HGB was 90. Maybe I'm just delirious with the lack of oxygen.

My dr said to try dropping the minocycline next.

Deb

[Lbrown]

I tried tacro again and lowered my dose of olmesartan slowly, 10 mg a week until I was down to 80 mg a day. The tacrolimus side effects all kicked in and I felt AWFUL, and my HGB continued to drop, although sometimes a little less than others. But nothing great.

So I quit tacrolimus last week and went back to the Marshall Protocol only, full dose olmesartan (160mg a day) and 4.5 mg a day of LDN. It may not improve my counts, but I sure feel a lot better.

I am staying on this treatment. I have a better quality of life on it and you can't argue with that.

Deb

[suntime]

Dear Deb,

It's quite interesting to read your history with LDN. Personally, I found an article on the Web about LDN and autoimmune diseases, and then ordered it as quick as I could.

I was diagnosed with severe aplastic anemia about 5 months ago. I haven't received any treatment so far, since I opted out on all the "traditional" treatments they offered me (which, you could've guessed, was ATG). I'm not much into drugs and all, basically I believe in natural therapies and the healing processes of the human body.

I've tried many approaches in the past months, ranging from herbs and essential oils to physical, mental and spiritual therapies (kinesiology, acupuncture, etc. etc.).

I've been keeping up with this idea so far, but it seems I'll have to go for the ATG myself too. In the first months I felt terrible, with my HGB dropping and dropping (it reached 50-55 eventually), and then everything became easier. I don't really know what happened, but I started to feel better and better - although my blood tests were the same, sometimes worse than the first ones.

In the past 4 months these numbers haven't changed. I receive RBC and platelet transfusions every week, and each week these numbers get down to the same ranges unfortunately:
WBC 1.3 - 2.0
RBC 2.2 - 2.4
PLT 2 - 7
NEUT 0.2 - 0.27

They don't understand how am I doing so well. They said I should be lying, being tired and exhausted, but I'm not. I actually walk a lot these days, some 3-5 kms in town. It just feels great.

I'm 28, male. I started LDN with about 4.2mg a few weeks ago (I have to make the portions myself from the 50mg original pills), and haven't experienced any breakthroughs yet However, I'm hoping the best as LDN sounds just awesome to me.

Normally I'll go to the hospital for ATG in 7 - 14 days, depending on their availability. They said they don't have an empty room just yet, but anything can happen so I should be prepared... (this "anything can happen" didn't sound right for me).

As everyone else, I hope for the best as well. This disease struck out of nowhere, I was happy, content and joyful, for the first time in like 15 years, and then BOOM!

It's great to have this community here!
Good luck everyone...

sun

[Lbrown]

Hi Sun,

I'm going to send you a private message. I think LDN helps a bit, but I don't think it is doing much. However, feeling a little bit better is ok.

Deb

[Lbrown]

My personal opinion only - if you are feeling well, I don't see a reason to intervene with drastic treatments that suppress your immune system. You need your immune system. I believe conventional treatments might be a bandaid, but not a cure. I don't blame anyone for trying any treatment though, but this is just based on my experience after having had several failed treatments. As with everything else, YMMV.

Deb

[suntime]

Originally Posted by Lbrown

if you are feeling well, I don't see a reason to intervene with drastic treatments that suppress your immune system

I totally agree with you. That's why I hadn't agreed on the ATG for such a long time. However, I have an other problem as well, causing some suffering to my ego - that is, the personality I built up in 28 years:

This problem is bleeding. On the right side, both of my wisdom teeth decided to come out, causing all my teeth to collide and this process results in bleeding. This started about 3 years ago, with very little to no bleeding at all, but in the past 6-8 months (that could've been the point where my thrombocytes went down, I guess) it became quite severe. And when I say severe, I mean that sometimes I end up sitting in the ER, explaining that I need thrombocytes for the bleeding just won't stop and I've lost a lot of blood already.

To be honest, this bleeding is a little unsettling at times. It's not a convenient feeling to wake up with your mouth full of blood... And because my PLT counter goes down sometimes to an absolute minimal level, I need those thrombocytes badly.

I know someone who has AA as well, and she got a little bit better after the ATG. Not much of an improvement, but she isn't thrombocytes-transfusion dependent anymore. Which, in my case, would be like salvation... as my doctors say I've started to develop some resistancy to those transfusions.

About ten years ago I cured myself from many diseases, when the doctors couldn't help (they made me sick actually). Now, I don't know what to do. I have tried everything that is natural, but my values haven't changed in the past 4 months. And I couldn't stop bleeding either... for which I need those transfusions, and that's why I decided to try ATG.

[suntime]

I don't know about You, but I would really like to understand why does such a "severe aplastic anemia" develop. I mean I lived a healthy lifestyle for years when this lightning struck on me. I am not angry or anything (not anymore), but I am curious what could've caused it.

Aplastic anemia is short for "we don't know what the hell is going on, but let's just give it a name so we can call it somehow".

What I know already is that herbs and natural treatments CAN make you feel better. And that's something really important. On some days (especially when I don't bleed or see any spots due to low PLT levels) I even feel that I'm completely healthy, I can walk, run, do some physical stuff, etc.

Do you feel the same, too?
Doctors always tell me that they don't understand how am I feeling that great when my levels are close to ZERO...

[Lbrown]

I'm sorry to hear about your bleeding problems. Your platelets are really low. After my ATG my platelets went up to 384, and they are still good (180) so hopefully it'll work for you too.

My personal opinion is AA is caused by infection. Check out the links I sent you, that's basically what they are talking about.

Deb

[suntime]

Hi,

Yeah my values are low. I'm waiting for an empty room to begin with the ATG... Will let you know how it goes