[Daisy May]

Hi all.

I have now been taking LDN for a just short of 2 months and have titrated up to 3.5ml and have stayed at this dose for the last 3 weeks. I have CFS/FMS. My pain has been reduced and my energy levels are slightly better. However, as mentioned in a previous post my skin has become more spotty (now clearing with topical antibiotics), and I seem to be getting minor infections and flu like symptoms which were a common feature of my CFS years ago when I first became ill.

For the last 3 weeks I have developed flu symptoms late afternoon which persists till the next morning and then I feel better for a few hours. Despite this I still feel better generally due to the reduction in pain and slight increase in energy. Today however, I have developed a nasty bladder infection and thrush and have been given a weeks course of antibiotics and thrush meds. In the past, bladder infections have usually gone onto causing kidney infections but hopfully this time with early treatment I can prevent that from happening.

Is this typical for CFS sufferers who may harbour latent infections or suffer compromised immunity? Is the T1-T2 shift theory that occurs in the first few months of LDN treatment correct and is this something I need to push through. Finally, is it true that Candida (thrush) can in the early part of LDN treatment be problematic and become worse for a time until the immune system adjusts?

My gut feeling is that there are some changes occuring in my immune system and that this shift has allowed some infections to get a hold.

I plan to reduce my dose to 3ml tonight and see if this improves things.

Many thanks for any feedback from the group or admins.

[LDNResearchTrust_admin]

I will ask the medical team and get back to you.

[Jiriki]

Daisy May, on 27 July 2010 - 02:33 PM, said:

Hi all.

I have now been taking LDN for a just short of 2 months and have titrated up to 3.5ml and have stayed at this dose for the last 3 weeks. I have CFS/FMS. My pain has been reduced and my energy levels are slightly better. However, as mentioned in a previous post my skin has become more spotty (now clearing with topical antibiotics), and I seem to be getting minor infections and flu like symptoms which were a common feature of my CFS years ago when I first became ill.

For the last 3 weeks I have developed flu symptoms late afternoon which persists till the next morning and then I feel better for a few hours. Despite this I still feel better generally due to the reduction in pain and slight increase in energy. Today however, I have developed a nasty bladder infection and thrush and have been given a weeks course of antibiotics and thrush meds. In the past, bladder infections have usually gone onto causing kidney infections but hopfully this time with early treatment I can prevent that from happening.

Is this typical for CFS sufferers who may harbour latent infections or suffer compromised immunity? Is the T1-T2 shift theory that occurs in the first few months of LDN treatment correct and is this something I need to push through. Finally, is it true that Candida (thrush) can in the early part of LDN treatment be problematic and become worse for a time until the immune system adjusts?

My gut feeling is that there are some changes occuring in my immune system and that this shift has allowed some infections to get a hold.

I plan to reduce my dose to 3ml tonight and see if this improves things.

Many thanks for any feedback from the group or admins.



Hello Daisy

I'm taking LDN for psoriasis, and I experience the same flu-like symptoms when I try to increase my dose above 1ml. Also like you, this starts early afternoon and continues until I fall asleep. I then waken up in the morning feeling ok.

Does your head feel very 'spinny'? My legs also get a buzzing sensation.

Again like you, these are things I've experienced in the past, and I'd put them down to sensations associated with anxiety - maybe it was something else, and as my immune system improves, these sensations are returning.

I'm uncertain whether to increase my dose and try to stick out the unpleasant feelings and see what happens.

Have you had the feeling of well-being which I thought occured when taking LDN? I haven't yet, and that was one of the reasons I wanted to give LDN a try because my mood is usually quite low.

I hope you find an answer to your questions and good luck with LDN

Regards

Jiriki

[LDNResearchTrust_admin]

This is now a reasonably common occurrence.


As the patient correctly states, as the immune system recovers, it may be fighting off latent infections.(of which in cfs there may be many) .

In my case, I would drop the dose to 2mg for another month, while these symptoms resolve, then gradually increase again.

This has been a successful approach in quite a number of patients.

At each stage of the increase, it is likely there will transient flu like symptoms. There should last no longer than 2 weeks.

Patients who have persevered have definately benefited at the end.

Thanks
Pharmacist Stephen Dickson

[Daisy May]

Hi Jiriki

Thanks for your post, interesting that your having a similar experience.

The flu like symptoms lasted for approx 3 weeks and have now passed. Not sure if it is a coincidence but when I developed the bladder infection and thrush I was prescribed antibiotics. I chose not to take them believing that in fact my bladder symptoms were due to candida infection and not the typical e.coli bacteria that would normally cause bladder infections. I have now taken 4 individual Diflucan tablets (200mg) with 1 day apart each time and the infections have cleared as have the flu like symptoms. Wonder if I was suffering with systemic candidiasis? I haven't seen any direct clinical evidence but anecdotally there appears to be a number of individuals taking LDN who may in the early stages of treatment develop problems with candida infections while the immune system adjusts.

In terms of feeling better, I had no symptom improvement until I got over the 2-2.5ml mark and now I have settled at 3ml having tried 3.5 and 4ml and feeling worse. I have just experienced the best 2 weeks for 3 years despite the infections which is wonderful. I have less overall pain and my tolerance to increased activity is much better. I am walking more and managing to do things I haven't done for over 3 years when things took a turn for the worse.

I wouldn't like to offer advise as I'm no expert, but suspect 1ml is perhaps too low. Maybe you would benefit from increasing your dose slowly. It easy to reduce your dose again if things get too tough.

Let me know how you get on.

Take care

Danielle

[Daisy May]

Just read the post from Stephen Dickson before replying to Jiriki, sorry missed it.

Yes may have been coincidence that that flu like symptoms culminated in thrush and bladder infection or perhaps were indeed candidiasis, time will tell, but things have settled. Incidentally my MSU results are still not back from the lab so until they come back I wont know what caused the bladder infection. but I'm very happy to be feeling better already, in fact, I'm ecstatic!!

Thanks admins and Stephen.

Danielle.

[Jiriki]

Hello again

I think I understand now, why when I increase the dose I begin to feel ill. I may have underlying infections that I'm not aware of, and as my body fights them, then I get flu-like symtoms.

Have I understood this correctly?

Thats interesting to me because for at least the last 12 years, when I've had a full blood count done, my white blood cell count has been very high, but with no raised ESR. I was referred to a haematologist who explained that I had too many of some white blood cells, and not enough of others, but he couldn't explain why.

I have a week off work starting on Sunday, so I will increase my dose to 1.25. Hopefully I should be able to put up with feeling unwell now I understand why. I thought it was just because LDN didn't suit my body the same way as an anti-depressent doesn't.

Glad you're beginning to feel so much better, and I hope you continue to improve.

Maybe we could meet on Chat sometime. I could do with some support as I can't visit my GP about LDN because she didn't want me to use it, and she doesn't know anything about it anyway to be able to support me.

Jiriki

[Daisy May]

Hi

Yes, that's my understanding too that the flu like symptoms are more likely a consequence of immunological and/or endocrine changes that the LDN has influenced as apposed to a direct reaction to the ingredients of LDN. I now see the flu-like symptom's as part of the process of recovery and not an indication that LDN does not suit you.

Typically, after a couple of good weeks I feel a little unwell again, similar to how you may feel if you 'coming down with something'. So, I'm resting a little more (not easy with 3 kids on school hols)! And will continue at 3ml until things have been settled for longer. Now I feel this is a transitory phase that may come and go and like Stephen Dickson says, there may be many lurking pathogens my body needs to deal with having had CFS for 17 years. Though you are treating an entirely different condition to mine, I expect that the LDN works in much the same way and symptom's experienced will probably be similar.

Would love to chat as well. x

Danielle