My trip to see Professor De Meirleir (long post)

[Valentijn]

Its great to have a helpful, local, independent pharmacist on my side!

My local pharmacist in the Netherlands has been great too, even with the non-Dutch prescriptions ... they even bill my digestive enzymes directly to the insurance, though most of the other things I get aren't covered under Dutch insurance

 

[Sasha]

What's bio iron, @justy?

 

[justy]

What's bio iron, @justy?

The pharmacist said he could only get it from the States and it would be expensive to buy and to ship - he said its a bit like stronger Floradix - basically a more bio-available type of Iron - the one from the GP is not so well absorbed, but I know Floradix is not great for people who are actually anaemic as the iron content is not high enough.

 

[Sasha]

The pharmacist said he could only get it from the States and it would be expensive to buy and to ship - he said its a bit like stronger Floradix - basically a more bio-available type of Iron - the one from the GP is not so well absorbed, but I know Floradix is not great for people who are actually anaemic as the iron content is not high enough.

I used to use a product called 'Gentle Iron' by Solgar - less likely to give people digestive problems. I wonder if it's at all similar?

 

[Mij]

@justy I took Floradix years ago and it did not raise my ferritin at all. I take an iron supplement that my compounding pharmacy makes, it's the best. They ship international but I don't know how much it would cost to England.

 

[Sushi]

@justy

I've taken Biotics iron supplements. They are supposed to be bioavailable.

Sushi

 

[snowathlete]

Thanks for that Sushi! I also wonder if it is for building red blood cells - I have been having iron deficiency and low cell counts and size for years and he was keen that we get that sorted out.

I took my prescription to my local, rural pharmacy today with some trepidation, but the pharmacist was amazingly helpful. He didn't baulk at all at filling the script - although the bio iron could be a problem, so I think ill make do with the normal iron from my GP.

He also suggested I ask my GP to prescribe the Rifampycin as it will cost £66 per 100 tablets (100 days at the moment) he said he knows some people end up being on it for a long time and it could be costly. Prescriptions are free here in Wales, so I think he was just being helpful, however I am under no illusions that my GP will prescribe this for me, so will pay for the first batch so I can get started and discuss it at my leisure with the GP.

Its great to have a helpful, local, independent pharmacist on my side!

Hi Justy,
I haven't been able to read all this but, I'm pleased you have a treatment plan and were able to get the prescription locally; that's fantastic. Good luck and I hope you improve and don't have too many side effects.

 

[Helen]

Thanks for that Sushi! I also wonder if it is for building red blood cells - I have been having iron deficiency and low cell counts and size for years and he was keen that we get that sorted out.

Hi Justy,
I am so sorry for your situation but I am sure you will handle this too. At least there is hope with new facts and treatment.
Maybe you already know that the body needs enough B12 to be able to store iron. With years of iron deficiency though you have supplemented I would check the B12 issue carefully. As iron deficiency by itself is serious I hope you will feel much better when on normal level. All the best!

 

[justy]

Hi Justy,
I am so sorry for your situation but I am sure you will handle this too. At least there is hope with new facts and treatment.
Maybe you already know that the body needs enough B12 to be able to store iron. With years of iron deficiency though you have supplemented I would check the B12 issue carefully. As iron deficiency by itself is serious I hope you will feel much better when on normal level. All the best!

Hi Helen, unfortunately no matter what I take I cant get my ferritin levels beyond about 10 - even when my iron levels inch up slightly, even after two years of continuous supplementation.

I have done b12 daily injections in the past for a low normal level (250 ish) I did this for 18 months, but then no longer felt any benefit. However my B12 levels have remained very high since then - they have been at at least 2,000 for over the past 18 months - 2 years. I still have some left in a dark cupboard somewhere so may think about doing a weekly small injection, but it didn't help with the iron before - neither did taking it with vit c.

 

[xchocoholic]

I don't know if it's available where you are but buffalo meat is an excellent source of iron. Rare of course. I used to cook mine in a cast iron pan too. Mine was low due to excessive bleeding during menses.

It took 3-6 months to feel better and get my numbers up.

Hope you feel better soon. @justy tc .. x

 

[justy]

I don't know if it's available where you are but buffalo meat is an excellent source of iron. Rare of course. I used to cook mine in a cast iron pan too. Mine was low due to excessive bleeding during menses.

It took 3-6 months to feel better and get my numbers up.

Hope you feel better soon. @justy tc .. x

Sorry to disappoint, but lifelong veggie here - and heavy periods for the past 30 years.

 

[xchocoholic]

Sorry to disappoint, but lifelong veggie here - and heavy periods for the past 30 years.

Yeh. Buffalo wouldn't qualify. I don't know what vegetarians use for iron.

Sorry to hear you've had heavy periods for so long. Hope you feel better soon.

Tc .. x

 

[Little Bluestem]

Hi Helen, unfortunately no matter what I take I cant get my ferritin levels beyond about 10 - even when my iron levels inch up slightly, even after two years of continuous supplementation.

@justy, Did you try Dog Person's B2 protocol? It is supposed to raise iron levels.

 

[justy]

@justy, Did you try Dog Person's B2 protocol? It is supposed to raise iron levels.

Im afraid I got terrible nightmares from low doses of B2- but thanks for the suggestion.

 

[justy]

Updates -
Still not into treatment protocol. Started Rifampicin for Bart and had very bad psychiatric reaction after every dose - not herx and was advised to stop. Then prescribed Doxy 200mg 1 x daily and clarithromycin 1 x daily.

I had some trouble getting the prescriptions etc and then finding a suitable time to try taking them. I started the doxy first, even though I was told to start the C first as I have been having ongoing breathing issues, probably because of the Cpn. The doxy helped the breathing issues straight away but caused widespread severe itching (no rash) this is listed as a serious side effect/allergic reaction.

However it didn't kick in straight away but about 4 hours after taking and intensified 15 hours after taking. I pushed on for three days with increasing itching (also woozy head, nausea, dizziness etc that was manageable) but the itching was waking me up at night so I contacted my GP.

He suggested we be on the safe side and stop for 4 days (that's how long it takes to get out of the system), see if the itching subsided, then take another dose to see if it comes back. He noted I had taken it before (for lung issues, it was great for this), but then we remembered that I had also been on 30mg a day of prednisolone, which may have masked any allergic response.

So I started it again yesterday - same neuro symptoms, same nausea. By the afternoon the itching had started, and by the night it was unbearable - waking me up every hour or so. It was a random all over the body itch that migrates rapidly from point ot point - no rash. It also itches in the weirdest places - up my nose, on the sole of my feet, in the creases behind my ears, on my chin, on the very tips of my fingers!

My GP suggests if it comes back I should stop, start the clarithromycin, see how I get on with that, then contact KDM for advice. I really don't want tp stop the doxy, but the response is not OK. My GP has been very supportive - desnt say much, but backs me up and is happy to do liver function tests etc. He thinks I should stop as allergic reactions can be serious - could change from just itching.

The reaction was after just 1 100mg dose of Doxy - probably not enough to be causing die off that would make me feel like this. Feel like such a wuss...I know I should expect some issues from abx, but to not be able to tolerate two in a row is a problem. Worried to try any more now... worried as I have lung problems and I NEED abx regularly that I am becoming allergic to some?

I see KDM at the end of Nov for IVIG... so far haven't managed any treatment and I first saw him in May. I had the same issue with Dr M and her treatments...couldn't tolerate anything much and have had to give up on all treatment plans in the past. Perhaps is best to wait and see him in Brussels and discuss. I also have echocardiogram scheduled with him, appointment and IVIG.

 

[Helen]

Hi @justy,

I am sorry to hear about your struggles with antibiotics - too. Did you have a 23andme test? Mutations in the "detox panel" (showing the Phase I and Phase II detoxification in the liver) might explain reactions to certain drugs. FWIW I had typical and severe Herxheimer reactions , according to an infectious specialist, after only 600 mg of doxycycline (three doses) when I had my first course of abx for Lyme.

 

[snowathlete]

Updates -
Still not into treatment protocol. Started Rifampicin for Bart and had very bad psychiatric reaction after every dose - not herx and was advised to stop. Then prescribed Doxy 200mg 1 x daily and clarithromycin 1 x daily.

I had some trouble getting the prescriptions etc and then finding a suitable time to try taking them. I started the doxy first, even though I was told to start the C first as I have been having ongoing breathing issues, probably because of the Cpn. The doxy helped the breathing issues straight away but caused widespread severe itching (no rash) this is listed as a serious side effect/allergic reaction.

However it didn't kick in straight away but about 4 hours after taking and intensified 15 hours after taking. I pushed on for three days with increasing itching (also woozy head, nausea, dizziness etc that was manageable) but the itching was waking me up at night so I contacted my GP.

He suggested we be on the safe side and stop for 4 days (that's how long it takes to get out of the system), see if the itching subsided, then take another dose to see if it comes back. He noted I had taken it before (for lung issues, it was great for this), but then we remembered that I had also been on 30mg a day of prednisolone, which may have masked any allergic response.

So I started it again yesterday - same neuro symptoms, same nausea. By the afternoon the itching had started, and by the night it was unbearable - waking me up every hour or so. It was a random all over the body itch that migrates rapidly from point ot point - no rash. It also itches in the weirdest places - up my nose, on the sole of my feet, in the creases behind my ears, on my chin, on the very tips of my fingers!

My GP suggests if it comes back I should stop, start the clarithromycin, see how I get on with that, then contact KDM for advice. I really don't want tp stop the doxy, but the response is not OK. My GP has been very supportive - desnt say much, but backs me up and is happy to do liver function tests etc. He thinks I should stop as allergic reactions can be serious - could change from just itching.

The reaction was after just 1 100mg dose of Doxy - probably not enough to be causing die off that would make me feel like this. Feel like such a wuss...I know I should expect some issues from abx, but to not be able to tolerate two in a row is a problem. Worried to try any more now... worried as I have lung problems and I NEED abx regularly that I am becoming allergic to some?

I see KDM at the end of Nov for IVIG... so far haven't managed any treatment and I first saw him in May. I had the same issue with Dr M and her treatments...couldn't tolerate anything much and have had to give up on all treatment plans in the past. Perhaps is best to wait and see him in Brussels and discuss. I also have echocardiogram scheduled with him, appointment and IVIG.

You're not having much luck are you, sorry to hear about the reactions. Hopefully KDM can work out an alternative for you. What's the IVIG for?

 

[justy]

You're not having much luck are you, sorry to hear about the reactions. Hopefully KDM can work out an alternative for you. What's the IVIG for?

IVIG to help boost the immune system - KDM said mine was seriously out of whack and I keep catching things all the time. My Igg IS NORMAL THOUGH ALTHOUGH MY SUBCLASSES ARE ALL LOW NORMAL. (SORRY caps lock not shouting)

I also have asthma, autoimmune antibodies and some LLMD's recommend ivig before iv abx if you have been ill for long time and I have two infections and KDM suspects three. IVIG has been shown to be useful in PWME and in Asthma and in people with autoimmune markers so...

You know how KDM is, he just says 'for your immunity'. I think he is right, my body needs respite from the constant round of extra infections, colds etc. and he is hoping this ill help that amd perhaps kick start my system to fight the chronic infections??

 

[Hanna]

@justy, it is so frightening those reactions to ABX . I wonder if you should ask KDM to switch to another tetracycline, in order to avoid the same reaction. You won't know wether that's the molecule that triggers the reaction or the extras (I mean the other ingredients which are also responsible for allergies).

German protocoles are generally based on mynocycline for example.
My protocole is also based on a different tetracycline that my doc prefers to use long term : tetralysal.

If there is an allergic reaction on the first time you take an ABX, you may encounter a more serious one the second time you trigger the immune system whith the same "offender".

That's not luxus : docs have to be also creative in order to treat us...

 

[JAM]

Sorry to disappoint, but lifelong veggie here - and heavy periods for the past 30 years.

I'm a reluctant meat eater, but my body does so much better when I consume animal protein. I'm obsessive about how the animals I eat live and die, to the point that I know the farmers that raise my beef and we are raising the pork ourselves this year. I know the man who process all our meat and that he slaughters in a way that ensures a quick and painless (as is possible) death with dignity and respect. I just had to accept that I am living in an omnivore's body and commit to making sure I consume animals in the most humane and respectful way possible to the earth, the animal, and the humans involved. It can be a hard transition, but if you are having so much trouble with issues that may be solved by consuming animal protein, and can accept that it may be in your nature to consume it, it may be worth it. We don't consider lions to be unethical, and know that they are a natural part of life on earth. We as humans have the ability to kill our prey in much less painful ways. We as a society can sometimes put so much ethical guilt on ourselves for things that go against our nature, goodness knows I suffered more than necessary for a long time trying to be "good" and not consume animal protein. It took a friend of mine who was an ethical omnivore reaching out to me for me to give myself permission to give my body what it needed. Some people are built to be vegetarians, and I wish I was one of them, but I'm not. Hopefully this didn't come out preachy or bossy, but just informative, because that is the way it was intended.