low dose naltrexone

[Lbrown]

Hi,

I did a search and could not find naltrexone discussed on this site. Has it been discussed before? I thought I remembered reading about it.

A nurse suggested I could try low dose naltrexone for my red cell aplasia, and I was wondering if anyone had any experience with it.

Thanks,
Deb

[Marlene]

Hi Deb,

I have not heard of anyone trying LDN for blood disorders. I've read about this a while back and keep it on the back burner in the off chance we need to consider it in the future. I have mostly read about the success in MS. It doesn't cure it but can greatly reduce symptoms and progression which is a big deal for those dealing with active MS. Here's a link of MS users you may find interesting. They talk about their experience with LDN.

http://neurotalk.psychcentral.com/thread50240.html


I assume you've checked out the LDN site. http://www.lowdosenaltrexone.org/

The story behind LDN is pretty interesting and worth exploring. Please let us know if you pursue this. It appear to be very low risk.

Good luck in your search.
Marlene

[Lbrown]

Thanks Marlene.

I am on an experimental treatment. Although I am feeling pretty good and not immune suppressed, and I've had a huge improvement in certain areas, it doesn't seem to be helping my HGB (I have low WBC and pure red cell aplasia - which to me basically adds up to aplastic anemia).

I've looked into valproic acid but the hematologist won't consider it. My other doctor was going to look into it.

A nurse advocating the experimental treatment I'm on for most other things, thinks LDN might be worth a try.

I am getting near the end of my rope with the continual transfusions and the up and down of fatigue. I'd like to have some options in my back pocket that are less drastic than ATG or chemo. The hematologist has already mentioned IVIG. I've already tried cyclosporine with a partial response. I will look into LDN some more, it might be ok in conjunction with or instead of what I'm currently taking.

Deb

[Hopeful]

Not to confuse things further, but do you know what your absolute reticulocyte count was at diagnosis?

I remember seeing a presentation on the AA&MDS International Foundation website that said having a normal or high absolute reticulocyte count at diagnosis was one of the most promising indicators that someone would respond to ATG. I think the chance of a response to ATG was something around 80%. The fact that you had a partial response to cyclosporine also makes it seem like your disease is immune related.

Have you considered the possibility of doing ATG without cyclosporine? They do a skin sensitivity test first to determine if you are hyper-sensitive to the ATG. Also, do you know what dose of cyclosporine you were on before? If it was more then 5 mg/kg/day, that could be the reason for your extreme reaction to it. Current research indicates that more than this just causes increased toxicity without any added benefit. However, some doctor's aren't up on the latest research and will prescribe higher doses.

Mild red cell aplasia can be seen with aplastic anemia.

Have you been tested for PNH with flow cytometry?

[Lbrown]

Hi,

My retic count at diagnosis was 48 on a scale of 25 - 100, but it should have been high due to the anemia - in a healthy person at least.

My retic count now on this treatment is 4. It's absolute count not % for both.

I took 450 mg of cyclo a day, I was at 89 kgs for awhile.

My alternatives for some reason all involve prednisone, which I will not take. My dad took it for years and years and I am not going there.

I've no idea if I was tested for PNH so I guess I haven't been. I only had the 1 BMB, in which they couldn't get any aspirate and couldn't tell the immunophenotype on the cells they did get (she "assumes" they are suppressor T cells).

I don't feel like doing ATG or chemo on an assumption. I can't even figure out if ATG would be a permanent thing. I asked, but I never get much of a definitive answer. I would also like to try less harmful treatments first. I feel much better but my blood counts have not improved.

I am a 45 yr old female.

Deb

[Hopeful]

Hi Deb,

Are you being treated at a facility that specializes in aplastic anemia and other rare bone marrow failure diseases? This is extremely important. You want to at least consult with a specialist who has seen many patients with these diseases vs. just a handful. If you have aplastic anemia, you don't want to fool around with experimental treatments. I am amazed that they didn't try and do another BMB on you, especially if there was no aspirate with the first. You really need the aspirate to help with the diagnosis.

I had to ask my local hemotologist to do the PNH test. He didn't know anything about it, as these diseases are rare. I consult with a specialist who is an AA/MDS/PNH expert.

That presentation that I mentioned previously is called "Aplastic Anemia: Current Thinking on the Disease, Diagnosis, and Treatment" by Dr. Young. It is really good and can be found at http://live.blueskybroadcast.com/bsb/client/CL_DEFAULT.asp?Client=680927&PCAT=944&CAT=1031

In it, Dr. Young talks about a new study that indicates that patients with an Absolute Reticulocyte Count > 25k and Absolute Lymphocyte count > 1k at the time of diagnosis have a 80% response rate to ATG.

If you do go the ATG route, you are only on prednisone for a month. The doctors will try to wean you off as quickly as possible to avoid the side effects.

I really think that you should get another BMB done ASAP. Ask for the PNH test. Don't settle for not having a diagnosis. Time is of the essence! Although you may think you feel good, if you are transfusion dependent, that is not good.

[squirrellypoo]

I can't even figure out if ATG would be a permanent thing. I asked, but I never get much of a definitive answer. When I had it back in 1984, they told us it was a cure for life, but the current research now (coming straight from Prof Marsh's lips) is that it usually only works for 5 to 10 to 15 years. It worked for 25 years in my case, but eventually even my time was up!

I totally agree with Hopeful about finding an AA specialist and definitely getting more BMBs done. I absolutely loathe having them and find them excruciating painful, but even I recognise thhat they're the only way to really see what's going on in your marrow.

[Lbrown]

What I meant was - does ATG leave you permanently immune suppressed?

Thanks for the feedback, it gives me a lot to think about and I can see I need to make an appt with my GP of almost 20 years and see if there's somewhere else he can refer me to for another opinion. As far as I know, the nearest center that specializes in this is at Sunnybrook Hospital in Toronto. It would be a 3 - 4 hr drive but that's ok. It just depends on how long the waiting list is.

The hospital I'm at now is a teaching hospital affiliated with the local med school. My former dr there went on to specialize in BMTs, and no longer takes general patients.

Deb

[Hopeful]

ATG doesn't leave you permanently immune suppressed.

You will be immune suppressed while receiving the ATG. It will knock out all your counts so you will be neutropenic, but you will be in isolation at the hospital during this time. My ANC was above 1.0 within a week of receiving the ATG, but everyone is different.

Of course, if you do ATG with Cyclosporine, you will be immune suppressed while taking the Cyclosporine.

If you mention that you have a bone marrow failure disease that may be aplastic anemia, they should schedule you in really fast at Sunnybrook. That has been my experience...one of the benefits of the disease I guess.

Good luck and don't procrastinate! If there is an auto-immune attack going on, you want to act fast to avoid irreversible damage.

[Lbrown]

So it looks like the ATG / tacrolimus didn't work, I had ATG in July and am 4 months out. The tacrolimus doesn't have many side effects, but it also doesn't seem to be working.

I am losing my hair. I am not sure if it is the tacrolimus or the fact that I had C diff 3 times, but if it keeps up I will soon need a wig. I asked my hemtologist if I could switch back to cyclosporine but she said no. I kind of had an argument with her, but she doesn't listen anyway. I don't know how much longer I will take the tacrolimus. It costs twice as much as the cyclo, and what's the point if it doesn't work?

Anyway, I started LDN this week. My HGB was at 100 yesterday (I got 3 units last Sat). On Tues I took 1.5 mg, on Wed I took 3 mg and Thurs I took 4.5 mg. I haven't noticed any effects, but I read it can give you insomnia the first week or so. I guess I have been a bit more awake at night, that's why I started at 1.5 mg. I will continue on 4.5 mg and see what happens.

I can feel my HGB is dropping because of the tinnitus - it gets louder. With my HGB at this level I wouldn't expect to feel bad, so I don't know if the LDN is making me feel any better, and how long it would take to kick in. I also started back to work on Monday, so I have a lot going on all at once.

For the LDN, I am just hoping the extra endorphins make me feel better. I don't expect it to make any difference in my counts.

I see another hematologist here next week. Since Sunnybrook gave up on me, there's no point going back.

Deb

[Marlene]

Hi Deb,

Sorry to hear the ATG did not work. I do understand why you may want to switch or stop the tacro. Sometimes you really have to push the docs to listen to you and to be more open to different possibilities. Glad you're getting second opinion.

I am very interested in your experience with the LDN. Please continue to report back on it. I know it can take a while to get the proper dosage figured out for an individual.

Is the c-diff under control at this point? Disruption of the good gut bacteria can be very taxing on your health in general.

[Lbrown]

Hi Marlene,

AFAIK the C diff is gone, the vancomycin and rifampin seems to have done the trick.

Ok, the day after I took my first 4.5 mg dose, I wanted to go shopping after work. My husband was in shock. Can't remember the last time I WANTED to go shopping. I have continued to have more energy. I rode my horse on Sat, went out to dinner, and stayed awake until midnight. Then on Sunday I went wig shopping for an hour (darn tacro!) and grocery shopping. I made dinner, gave the dog a bath, and knit a little headband for her to keep her ears out of her food. Back to work on Mon & Tues, tired but it had been rainy and dark those 2 days. Tues evening went to the barn - didn't ride but worked with my horse in the cold and then felt good after.

I can feel my HGB is dropping, I estimate it is 88 today. I feel a bit dragged but overall less fatigued than usual. The LDN caused a bit of insomnia but nothing too bad. One night I noticed my heart was beating fast, but it wasn't pounding. I was totally wired after I rode my horse on Sat - I guess I got a double dose of endorphins.

A nurse told me to expect it to take 2-3 weeks to see any difference in my counts, I am getting tested tomorrow. According to some new info on the ldnresearchtrust site, it makes you produce more lymphocytes which can temporarily exacerbate MS (most of their info is on MS). But it then makes you produce more suppressor T cells, which modulates the pesky Th1 cells that are supposedly causing the problems.

I am trying not to get my hopes up, because surely it couldn't be so simple. I could also be feeling better this week because my HGB is higher than it's been in awhile, but me wanting to go shopping is definitely something new.

But, so far so good.

Deb

[Lbrown]

Here is the info about the lymphocytes on page 2: http://www.ldnresearchtrust.org/uploadeddocuments/ldn-fact-sheet-nov-2009.pdf

[Marlene]

I'm glad you have more energy. I know what you mean about jumping to conclusions early on....it's the old "wait and see" . Seeing improvement in red cells can take a while. Even when John was on procrit, it took two months before we saw an increase in intervals between transfusions. So much depends on how many stem cells you are working with.

Thanks for the link...I will check it out.

BTW...I think you are the first to try LDN for blood disorders, so thanks for exploring and sharing the experience for everyone.

Marlene

[Lbrown]

My HGB yesterday was 83 - that is a drop of 17 points in 1 week, so slightly worse than normal. With MS they did warn of a temporary exacerbation of symptoms.

- my tacrolimus level is at 6, so in the therapeutic range, it is doing *nothing* other than making my hair fall out :mad:
- I feel better than I normally do at HGB 83. I ran around at agility last night without being completely out of breath.
- my sense of humour is better and I'm not so tired.
- I did not get my lymphocyte count, but will try to get it tomorrow.
- LDN is giving me weird / bad dreams, but I usually don't dream (or remember them).

Stay tuned.

Deb

ps - my counts were: HGB 83, WBC 1.5, Neut: 0.9, Plate: 160, Creatinine: 103, Lymph: 0.44
My counts last week: HGB 100, WBC 1.9, Neut: 1.2, Plate: 181, Creatinine: 125, Lymph: 0.5

I'm interested to see if my lymphocytes went up.

[Lbrown]

Marlene - thanks for the reminder that red cells take a long time to come back. My last retic count was 1.9.

[Marlene]

Ah....1.9 retic is good. John didn't start procrit until his retic count was up to 1.5 - 2%. So he was already starting to make his own red cells when they put him on procrit and it still took quite a while for it to show up in his cbc.

Also, as a point of reference, John's WBC and ANC would fluctuate like yours when he was in the beginnings of recovery after he stopped neupogen. At times, it put me in panic mode. It still fluctuates but we don't follow it as closely because the ANC is in a normal range now. His platelets bounce around from 90 - 107K.

I didn't realize you could be on tacrolimus and LDN at the same time. And from what I read, the crazy dreams should stop at some point.

[Lbrown]

Well, you're not *supposed* to be on immune suppressants and LDN at the same time, but they didn't give a reason for that. My choices were to take 2 together or drop the tacro and get in trouble (yes, they measure that). I might still drop the tacro, I know I want to. It's not doing anything except make me poor and bald.

I'm also wondering if the minocycline I'm on might be blocking the tacro, something like rifampicin did. Something about tacro working via the mTOR pathway and mino being a PXR agonist which might also affect mTOR somehow. Right now I don't know if I want to change anything.

Thanks for the info about John's counts fluctuating. I wasn't too excited about my WBC/Neuts.

Deb

[Lbrown]

Found out my lymphocyte count was 0.44 on Thursday, so it also dropped a bit.

There almost seems to be no correlation between my lymphocyte count and my other counts, although my hematologist told me the lymph count is the one to look at to see if things are working.

I don't get it.

[cathybee1]

I'm also wondering if the minocycline I'm on might be blocking the tacro, something like rifampicin did...
Thanks for the info about John's counts fluctuating. I wasn't too excited about my WBC/Neuts.

Deb

This might totally be a coincidence but 10 years ago, my husband Bruce had a persistent staph infection. He was taking minocycline and rifampin. For quite a while. His WBC plummeted and never recovered.

[Lbrown]

Sorry to hear about your husband's WBC not recovering. Mine is back to where it was pre-ATG. I do believe that infections play a much bigger role in these diseases than is currently thought, whether it is viral or bacteria that can't be cultured or identified yet.

I am taking 100 mg minocycline every 2 days, so it's a very low dose, unlike the rifampin that I took.

Deb

[Lbrown]

OMG. Ok, this may mean absolutely nothing, but hey - I am ready to celebrate *any* improvement and goodness knows I have not had much to celebrate.

Look at my WBC's & neutrophils! They haven't been this high since I had prednisone right before the ATG. And look at my creatinine - I have increased my exjade which usually increases the creatinine, as does tacrolimus. I also still have some extra energy from the LDN.

I am attacking those T cells with tacrolimus, minocycline and LDN. Real interesting experiment done with mino: http://www.jleukbio.org/content/78/1/135.full

My last transfusion was Sat, Nov 27 so the HGB is nothing to get excited about but the WBC is. Even on cyclosporine my WBC was not that high.

My counts this week: HGB 103, WBC 2.4 Neut: 1.6, Plate: 97, Creat: 97, Lymph: 0.6
My counts last week: HGB 83, WBC 1.5, Neut: 0.9, Plate: 160, Creatinine: 103, Lymph: 0.44
My counts week before: HGB 100, WBC 1.9, Neut: 1.2, Plate: 181, Creatinine: 125, Lymph: 0.5

Woot!

Deb

[Lbrown]

Modulation of T Lymphocyte Function by the Pregnane X Receptor: http://www.jimmunol.org/content/184/6/2949.abstract (minocycline is a PXR agonist. So is rifampicin but it makes your body metabolize tacrolimus too fast, which is bad if you're on tacrolimus as I found out).

[Marlene]

I think you should celebrate!!!!!!

[Lbrown]

Well, it is nice to feel a little bit better, that is for sure.

Here are the possible explanations:

- I could be finally recovering from C diff (I think it may have taken a far greater toll on me than anyone but my GP realized)
- the tacrolimus could be kicking in
- the mino could be kicking in
- the LDN could be kicking in
- it's just a fluke
- maybe the ATG really did do something
- some or all of the above

So whatever it is - yay.

Deb

[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/vaop/ncurrent/abs/cmi201077a.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]

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 :)

[Lbrown]

Good luck Gustav!

Deb

[suntime]

5 days ago I modified my dosage of LDN - meaning that I lowered it. The basic principle behind lowering the dosage is that we're talking about 'homeopathic' quantities. Thus, the less 'material' the more information, I thought.

Also, I read somewhere that a woman found out that she didn't make any use of the original - or widely recommended - dosage, which is 4.5mg. She tried 2.5 - 3.0mg and it worked a lot better for her (with her SM).

So 5 days have passed with my 'new' 3.0mg LDN. Something has definitely changed, as I sleep a lot better and have really vivid dreams - so vivid that I can't decide what is real.

I came in the hospital 2 days ago, the 5-week treatment has begun. I am hoping for the best... while being content with what I have :)

Blessings to All,
sun

[Marlene]

and ovarian cancer.

http://www.sciencedaily.com/releases/2011/07/110712143012.htm

[Lbrown]

Interesting. I wonder what "nude mice" are? Also have to be careful about extrapolating mice studies to humans. My mother in law died of ovarian cancer less than 2 years ago. She was stage 4 when it was diagnosed and had no symptoms up until then. The chemo made sure the strong cancer cells survived.

Deb

[Marlene]

I think nude mice are hairless. And yes, mice vs human is an issue. Not sure why they have to test it on mice though since it's in use in humans today.

[Lbrown]

It may not be ethical to test on people with ovarian cancer. What is the significance of nude mice I wonder? I'm gonna go look it up.

Deb

[Lbrown]

Couldn't find much out about nude mice so far, but have a look at this:

Strains Of Laboratory Mice More Varied Than Previously Thought
http://www.sciencedaily.com/releases/2007/07/070730092539.htm

"if one is studying mouse strains for responses to particular drugs, you make assumptions that the strains have certain pedigrees. If they don't, what you are doing may not mean anything."

Wow.

[Marlene]

And I just saw this Huffington Post re humanized mice for drug testing. Wild stuff.

http://www.huffingtonpost.com/2011/07/12/humanized-mice-drug-testing_n_896539.html

[Lbrown]

Well, maybe it'll have some useful applications. But human and mice immune systems are quite different. By only looking at how the liver deals with drugs, they are being very narrow.