Sick but never sick

[digital dog]

Thank you Raines. I read that some people get anxiety with LDN. That is a big no-go for me. I never used to get anxiety but a week on fish oil started off a two year nightmare which I am still trying to recover from. I know most people do very well on fish oil and I am well aware how beneficial it is meant to be but for me it nearly killed me. I suppose my reaction to that makes me VERY nervous in trying anything else. It does seem easy to get hold of and not expensive though.

Brenda, going gluten free certainly lowered your antibodies. That must have been very encouraging. Please do try and let me know your recent results when you have them. I know here in the UK we don't get tested often enough. Did you get any more benefits from going gluten free?

Raines, I can get more energy from all kinds of supplements and drugs, the problem is energy for me comes with insomnia and/or anxiety. I would rather be fatigued than have these. I haven't specifically tried tyrosine but I think it would do the same. My body is not balanced and it swings very easily. Hence being diagnosed with bipolar...which I DO NOT HAVE.

I think I will stay away from LDN but tomorrow I could feel differently. For all I know, I could be on it in a week

Scary stuff.

X

 

[brenda]

DD

My new GP won't test my antibodies so l don't plan on knowing how they are going but yes a huge improvement on gluten free but it took a while to get it out completely as l kept making assumptions which proved false. I used to get skin rashes and they stopped and improvements all round.

I suffer badly from anxiety so am keeping tyrosine at 100 gms for now. It affected my sleep for a few days then settled.

 

[Gijs]

I don't get the flu anymore for almost 20 years now. It looks like some patiënts have more Hashimoto and others Graves disease (hyper). Another reason can be that most patiënt are housebound and don't have many contacts with other people anymore so the change you get the flu is significant limited. I think it is interesting to find out why some patiënts feel better if they have a real flu.

 

[dannybex]

So the question is:

• Is our immune system so depleted that we can't really launch a defense?
• Is our immune system so overactive that we are constantly launching a defense?

I guess which parts of our immune system are active/overactive depends partially on our genetics and partially on how long we've been ill. That magic "three years".

But it matters. LDN has an antagonistic effect on the macrophages' Toll-like receptors. Taking something like GcMAF or lactoferrin, both of which activate macrophages.... what am I missing, here?

I'm not a scientist, but I'm not sure it's a matter of 'either or' -- depleted or overactive -- although I supposed it could be depleted because it was overactive for too long. But it would be nice if one could find studies to back up these things.

It's my understanding that lactoferrin modulates the immune system, and helps keep iron from being used by viruses, bacteria, etc.?

 

[JaimeS]

@dannybex - Lactoferrin activates macrophages :

http://onlinelibrary.wiley.com/doi/10.1080/15216549700203841/pdf

http://www.ncbi.nlm.nih.gov/pubmed/17034774

http://www.sciencedirect.com/science/article/pii/S1567576904001559

etc, etc

GcMAF also activates macrophages. So the question becomes, would we like to activate macrophages or quiet them, as LDN promises to do?:

Naltrexone, however, exerts its effects on humans via at least two distinct receptor mechanisms. In addition to the antagonist effect on mu-opioid and other opioid receptors, naltrexone simultaneously has an antagonist effect on non-opioid receptors (Toll-like receptor 4 or TLR4) that are found on macrophages such as microglia [17].

(From: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/)

-J

 

[alkt]

This is precisely why it was callled CFIDS at one time, as in Chronic Fatigue and Immune Dysfunction Syndrome. The immune system isn't 'deficient' as some claim, it's dysfunctional. The th1-th2 balance is messed up. Never getting 'real' colds or flus is one of the key, classic symptoms.

If we could get real, decent fevers -- that burn off bugs, viruses, etc., -- then we wouldn't be chronically ill.

my illness started with a flue fever for 13 days most off which i have no memories of a chronic high fever is not something i would want to go through again. bad enough with low grade fever p e m.

 

[snowathlete]

Interesting. Do the high fevers last for several days to a couple weeks or so? And/or when they resolve, does your stomach infections resolve?

They last several days while I have the stomach bug and end along with the bug, once I've overcome it. Really the same as when I was well and caught one but more intense and a higher fever. Having that as well as ME/CFS was awful, hard to bear. It was the only time in my adult life that the GP has had to come see me rather than the other way round.

 

[snowathlete]

My GP gave me a Rx for 1.25mg LDN. I had been lobbying him for me to try it for some time. I had my husband take the Rx to a compounding pharmacy in Toronto that was listed on an LDN website. I was given a months worth in the form of capsules.

I didn't want to start with a full dose and I wasn't up to figuring dilution and titration so I eyeballed it by opening the cap and putting about a 1/3 of a cap in water and drinking it down. I noticed a very clear improvement within a few hours of the first dose. It's not really easy to describe.

I have had constant pain for quite some time. I'd say the deep pain is gone. The morning pain and stiffness is relieved. I have to qualify that I have Fibromyalgia for which this drug is labelled in Canada. I have been upping the dose over the course of the week (I started 7 days ago) but I have not yet taken the full 1.25mg dose. I haven't had any bad effects at all so far. But early days maybe although I can't help but feel quite optimistic.

The pain I have now feels quite superficial and easy to cope with. I feel less fatigue--I think because I'm not having to cope with the deep pain. So I have more physical stamina during the day.
The powerful sense I had right after the first dose has gone--I think this is because I simply quickly adapted to the new lessened pain level.

It has not impacted my cognitive dysfunction which has become quite severe (it was funny the first dozen times I called my son by the cats name--we're way past that now). And my sleep is not good-- although I seem to cope better with a lack of sleep. All my other issues are still there but I feel that the pain relief is way past anything I could get from a regular pain reliever. And that means a lot to me.
One other thing I would say is that I could actually feel my body relax somewhat but as I've been more active over the past few days I can feel the tension start to come back. With luck upping the dose might compensate for this otherwise I'lll have to curb my enthusiasm and take more breaks for rest. So finding the 'zone' where I can function is the job for the next while.

I don't quite know what else you may be wanting to know, feel free to ask and I'll try to answer.

Thats great, thanks for sharing. The only pain i get is from severe fatigue/weakness and i dont have fibro. But it sounds like it is still worth me trying it out. I really hope that you see sustained improvement with it.

 

[SDSue]

For the first 12 years or so when my ME was mild I had constant colds, flu, bronchitis etc., literally I would catch something every 3-4 weeks; just as I was recovering from one infection/fever the next one would start coming on. Then when the ME turned moderate and later severe I stopped getting normal infections altogether.

Ditto.

Not sure my immune system was ever great - even as a kid, I NEVER got sick. It was the family joke.

 

[dannybex]

@dannybex - Lactoferrin activates macrophages :

http://onlinelibrary.wiley.com/doi/10.1080/15216549700203841/pdf

http://www.ncbi.nlm.nih.gov/pubmed/17034774

http://www.sciencedirect.com/science/article/pii/S1567576904001559

etc, etc

GcMAF also activates macrophages. So the question becomes, would we like to activate macrophages or quiet them, as LDN promises to do?:

I guess it would depend on the patient and which way their immune system is tilted. Perhaps if one has a bad or non-existent reaction to LDN, then lactoferrin might be worth a try. It was my understanding that in general ME/CFS patients have low white blood cell counts, so not sure if lactoferrin activating macrophages would be a problem.

But I'm not a doctor, not barely even a functioning nitwit.

 

[JaimeS]

But I'm not a doctor, not barely even a functioning nitwit.

!!!!

This makes you better than a doctor, who can't admit the same.

I'm just confused at the apparent dichotomy. Apparently, people are helped by things that activate macrophages and by things that calm them down. How could this both be true?

It may be that it's two separate groups who are helped, but perhaps there's a model where both make sense.

If you have a chronic infection, killing it off would make you feel worse at first, but eventually better. If you have a chronic infection, calming your immune system for a second might make you feel better in general, or get you to stop attacking your own tissues. Perhaps it's a good thing in either direction... for everyone.

It would make an interesting study.

* Start with a large patient cohort, MS or ME or both.
* Assign randomly to LDN, GcMAF, or control group.
* At four months, if a patient in the LDN group hasn't been helped by LDN, switch them to GcMAF and vice-versa. (Consider publishing as a second study rather than all together?)
* At one year, publish findings.

Now, where's the several million I'd need to make this happen?

-J

 

[jimells]

Normally you get invaded by a virus and it takes time for your body to mount a response so you get a full blown cold/flu. But I think our response is on all the time, hence an invader doesn't stand much chance of getting any kind of foothold

This seems to be my experience. In the past six years I have had two or three "four-hour colds". I wake up with my nose running like an open faucet, etc. Then by noon it's completely gone. It's a very odd experience.

 

[jimells]

I rarely catch anything, I've maybe had five coughs or colds in the last ten years, but when I do get something I consider it a good sign. It's also a nice break, the whole different sick feeling -if that makes sense.

Well, not to me, but it did make me laugh, so thanks for that!

 

[jimells]

Anyone on this forum that had a VERY nasty reaction to SSRI's (theanine, glutamine, 5HTP, fish oil etc) but foune LDN okay?

I react badly to SSRIs after a few weeks. Cymbalta nearly killed me (SNRI, I think) by causing a hypertensive crisis and an unbearable icepick headache.

But six months of LDN did nothing for me, good or bad, so I gave it up.

 

[jimells]

With all the reports of Hashimoto disease on this thread I thought, just how many of us have this disease? It seems like something the CDC must have researched. Apparently no one in the entire research field has ever asked this question. I can find nothing on Pubmed.

Although I did find it interesting to know that Hashimoto is still publishing, and in 2007 he (she?) published a paper titled, "History of Chronic Fatigue Syndrome" with plans to develop yet another criteria. Too bad it's in Japanese.

 

[Wayne]

I'm not a doctor, not barely even a functioning nitwit.

Hi @dannybex,

That may be so (I doubt it however ), but since most doctors get virtually no in-depth training in immunology, you may fare better in comparison with them than you think!

 

[JPV]

For the first 12 years or so when my ME was mild I had constant colds, flu, bronchitis etc., literally I would catch something every 3-4 weeks; just as I was recovering from one infection/fever the next one would start coming on. Then when the ME turned moderate and later severe I stopped getting normal infections altogether.

This is very similar to my experience. For the first 5 or so years after coming down with ME/CFS I used to get colds and flus quite frequently. In the last 15 years it's been very rare for me to ever get sick.

 

[JPV]

It has not impacted my cognitive dysfunction which has become quite severe (it was funny the first dozen times I called my son by the cats name--we're way past that now).

Maija Haavisto, who's a big proponent of using LDN to treat ME/CFS, seems to have gotten good results using Piracetam to alleviate her cognitive issues...

Anecdotal evidence of different CFS/ME treatments

Piracetam (Nootropil) (2007-present)
Usage: 2 x 1,200 mg a day, first "an attack dose" of 4 x 1,200 mg a day for two days
Supposed to help: brainfog, tiredness, fatigue, mood, immune system, circulation, neurological symptoms, vertigo
Science: Piracetam is a nootropic, that is it helps cognitive function and reduces cognitive fatigability both in healthy people and in those with cognitive impairment. In a way it stimulates the brain, but it is not a stimulant. It also helps circulation without being a vasodilator or a vasoconstrictor. It may be one of the best drugs to treat CFS/ME, because it is frequently helpful, produces hardly any side effects and doesn't interact with other medications.
Results: I feel less tired and more alert, I can think more clearly and concentrate better and my brain doesn't get fatigued so easily. My memory is somewhat improved. The improved circulation is also noticeable, e.g. if I elevate my hands. In general I feel more normal. For the first few days I felt slightly lethargic and irritable, but it went away after that. At first my chronic urticaria (which had been helped a lot by the LDN) flared somewhat due to the increased membrane permeability, but it too soon started to subside.
Watch out for: Piracetam can sometimes cause a restless, "wired" feeling and insomnia. Those effects will probably disappear if the dose is decreased. Some people need two or three tablets to notice anything, others get great benefit with just half a pill, so it's important not to "overdose". However usually the usage is started with an "attack dose", that is for a few days you take a large dose and after that you start taking a smaller maintenance dose.
Recommendation: Definitely. It's very safe and often helpful. Many people notice distinct effects after just one dose, but others may need to use it for a few weeks before it begins to work effectively.

 

[Sidereal]

This seems to be my experience. In the past six years I have had two or three "four-hour colds". I wake up with my nose running like an open faucet, etc. Then by noon it's completely gone. It's a very odd experience.

I've had experiences of this sort too. Sometimes I feel like a major cold is coming on and I think wow, I'm finally getting a normal infection. 2-4 hours later it's gone.

 

[Sushi]

Sometimes I feel like a major cold is coming on and I think wow, I'm finally getting a normal infection. 2-4 hours later it's gone.

My question is "Gone where?" Is it gone-gone, or has it morphed into some other aspect of our regular symptomology?