My trip to see Professor De Meirleir (long post)

[LivingwithFibro]

I don't tolerate high dose B12 or COQ 10 or B6 orally - so I think its great stuff! wish I could still have them when I get home. The anti-inflammatory nature of the Glut has definitely decreased my pain levels quite significantly - bottom pain that I have ben struggling with for two years has gone for now - I can even sit in a seta without a cushion and suffer no ill consequences

Glad to hear you are feeling better, Justy! I have been following your journey although I haven't been commenting.
Glut, as in Glutathione? You are getting it in IV form, right? Did you notice any other changes?

Also, I might have missed this but is KDM giving you probiotics as well?

My best wishes, have a WONDERFUL and relaxing weekend. Keep going, warrior spirit.

 

[justy]

Update: I finished my IV Glutathione and vitamin IV's 6 weeks ago and so far the improvements I have had have been holding. Before I went to the clinic for 6 weeks treatment I was mainly in bed all day, I couldn't stand up to cook for more than a brief time and I hadn't vacuumed the house at all for a year...small cleaning tasks left me exhausted and crashing and I wasn't even sure if I was well enough to travel to Brussels.

Since August I have had more energy, been up in the day more and able to cook again - I have even cooked for pure pleasure once or twice! I can clean a little and vacuum. I haven't tried any exercise or even much walking yet...still feel like I could crash easily back to were I was. But last week I went out for a couple of hours to the shops with my daughter in her car, I took my wheelchair but didn't really use it, I walked a little holding on to it, stood in shops, had lunch in a very noisy café and then went to a few more shops. I was tired at the end of it, but not too wiped out! went home and rested in bed for a couple of hours and then still ok to help cook dinner for everyone.

This improvement must have been related to both the IV's reducing inflammation, and I think to the intense rest I had for 6 weeks (away from my family with no day to day stress). I have only had 3 GG injections so far as the last one made me itch terribly (but delayed reaction....) so I have stopped them again, so not sure these can have been having any effect.

I feel the anti-inflammatory effects of the Glutathione must be beginning to wear off as my bottom pain is back and is worse than ever - hard to sit down at all! and my lymph nodes are sometimes swollen again (these went down for the first time in 7 years at the clinic). My pain levels are also creeping up a little again in my joints, especially fingers, hand and ankles.

I was finally officially dx with MCAS last month by a Professor Arshad in Southampton (privately). He has written to my GP with suggestions about drugs and says if I treat the underlying infections and immune dysfunction it will go away, but he has said again that I need to be very careful what I take to try and achieve this as I could then prolong the MCAS. he felt confident that I would eventually stop reacting to things, but it could be weeks, months or years. He did say I definitely shouldn't ever take Tetracycline antibiotics again (this was something I was unsure about before) So that makes treating the Cpn, Lyme and Bart a little harder if I ever get to the point of being able to take abx.

I'm going to give the GG a go again starting this week and luckily this time have an Epi pen to hand that my UK Gp prescribed for me. Professor Arshad said the itching might settle as my immune system accepts the drug or it might not so I am going to see - I feel renewed confidence in my treatment plan as this trip worked out so well so far. Then I go back next month for an apt and am going to have a Glutathione and 'athletes' (like Myers cocktail) IV while I am there, just to top me up a bit.

 

[LivingwithFibro]

Update: I finished my IV Glutathione and vitamin IV's 6 weeks ago and so far the improvements I have had have been holding. Before I went to the clinic for 6 weeks treatment I was mainly in bed all day, I couldn't stand up to cook for more than a brief time and I hadn't vacuumed the house at all for a year...small cleaning tasks left me exhausted and crashing and I wasn't even sure if I was well enough to travel to Brussels.

Since August I have had more energy, been up in the day more and able to cook again - I have even cooked for pure pleasure once or twice! I can clean a little and vacuum. I haven't tried any exercise or even much walking yet...still feel like I could crash easily back to were I was. But last week I went out for a couple of hours to the shops with my daughter in her car, I took my wheelchair but didn't really use it, I walked a little holding on to it, stood in shops, had lunch in a very noisy café and then went to a few more shops. I was tired at the end of it, but not too wiped out! went home and rested in bed for a couple of hours and then still ok to help cook dinner for everyone.

This improvement must have been related to both the IV's reducing inflammation, and I think to the intense rest I had for 6 weeks (away from my family with no day to day stress). I have only had 3 GG injections so far as the last one made me itch terribly (but delayed reaction....) so I have stopped them again, so not sure these can have been having any effect.

I feel the anti-inflammatory effects of the Glutathione must be beginning to wear off as my bottom pain is back and is worse than ever - hard to sit down at all! and my lymph nodes are sometimes swollen again (these went down for the first time in 7 years at the clinic). My pain levels are also creeping up a little again in my joints, especially fingers, hand and ankles.

I was finally officially dx with MCAS last month by a Professor Arshad in Southampton (privately). He has written to my GP with suggestions about drugs and says if I treat the underlying infections and immune dysfunction it will go away, but he has said again that I need to be very careful what I take to try and achieve this as I could then prolong the MCAS. he felt confident that I would eventually stop reacting to things, but it could be weeks, months or years. He did say I definitely shouldn't ever take Tetracycline antibiotics again (this was something I was unsure about before) So that makes treating the Cpn, Lyme and Bart a little harder if I ever get to the point of being able to take abx.

I'm going to give the GG a go again starting this week and luckily this time have an Epi pen to hand that my UK Gp prescribed for me. Professor Arshad said the itching might settle as my immune system accepts the drug or it might not so I am going to see - I feel renewed confidence in my treatment plan as this trip worked out so well so far. Then I go back next month for an apt and am going to have a Glutathione and 'athletes' (like Myers cocktail) IV while I am there, just to top me up a bit.

Those are some nice improvements! Little they may be but they pave the way for better things to come. I know how uplifting it is when you finally have the energy to clean a little or cook, do normal things...I hope things keep improving on Dr KDM's protocol.

Can you not get athletes IV cocktail and IV Glutathione in the UK? This way you won't have to travel all the way to Belgium?

 

[Hanna]

Well done @justy !
If you have some good results with glutathion IV, why not trying to shift to the liposomal glutathion when you are at home ? Dr Horowitz is a strong advocate (1,000 mg- 1,500 mg daily). It is one of the things that helps me. Not a cure, but definitely some help to diminish the toxic burden from bacteries, but also heavy meatls etc.

 

[justy]

Stool tests back today - D lactate high, Low ratio of Firmicutes to bacteroidetes (may be associated with gut inflammation) Diversity index - low 3.28 - Dysbiosis associated with Low diversity.

This is not what I expected as I haven't even taken any antibiotics for my infections due to the MCAS. When I first was tested in May 2014 there was just a very mild Dysbiosis and no D lactate.

On the positive side KDM has finally found an iron I can tolerate and I wonder if this is bringing my chronically low ferritin up and helping how I feel.

Have also been diagnosed with Mitral Valve prolapse with a grade 1 (of 4, so the lowest) regurgitation - still waiting to see my NHS GP about this - I have had to wait so far 6 weeks for an appointment!

 

[justy]

Those are some nice improvements! Little they may be but they pave the way for better things to come. I know how uplifting it is when you finally have the energy to clean a little or cook, do normal things...I hope things keep improving on Dr KDM's protocol.

Can you not get athletes IV cocktail and IV Glutathione in the UK? This way you won't have to travel all the way to Belgium?

Thanks - yes it's great to get some functioning back.

I have to go over for an appointment anyway, so just having one dose. I looked into it in the UK, but unfortunately its extremely expensive and would require a lot of travel as I stupidly live in a very remote part of the UK.

 

[MadeleineKM]

Strange that the stool test results was worse than before, sorry for this What probiotics have you used?( if you can take). Do you know the name of the iron he found to you?

 

[justy]

Strange that the stool test results was worse than before, sorry for this What probiotics have you used?( if you can take). Do you know the name of the iron he found to you?

Have not been using any probiotics the past year, before that I made Kefir for a while. Ferricure is the name of the iron - I know iron is not always good for Dysbiosis, but I have been in and out of iron deficiency anaemia for years and my ferritin is normally around 5! would love to get that higher and finally the ferricure does not destroy my stomach.

 

[MadeleineKM]

When you iron is that low you can hopefully espect more improvement if you get it up with the new iron, thats good news. My sister was at 3 and she had some improvement when she got that up. Worse for my mom that dont handle any iron and she has cronically low after giving birth to me so I will tip her to try this iron just in case she handles it Cross my fingers that you will have good results from this!

 

[justy]

@MadeleineKM - I couldn't get this in the UK - KDM prescribed it for me and I got it from a Belgian pharmacy.

 

[MadeleineKM]

So a prescription is needed to get it? We will ask at the pharmacy to just in case some is nice...

 

[Gingergrrl]

@justy I am so happy to hear about your improvements!!! I am still trying to get nebulized glutathione (long, boring story) approved for me to try and your improvements on it sound great and that you tolerated it with MCAS. Glad you have an EpiPen now, too.

 

[aquariusgirl]

@Gingergrrl .. u can buy a nebulizer and glut to nebulise... there's a company in Utah that sells the capsules and u mix it with distilled water...

did kaufman Rx something?

 

[Gingergrrl]

@Gingergrrl .. u can buy a nebulizer and glut to nebulise... there's a company in Utah that sells the capsules and u mix it with distilled water...

did kaufman Rx something?

@aquariusgirl No, this has nothing to do with Dr. Kaufman and is something from my mold and MCAS doctors. It has just been incredibly complex to arrange on their end (and a long story to explain and I don't want to detour Justy's thread.)

 

[AndyPandy]

So happy to read that you have had some improvements @justy.

Best wishes Andy

 

[Valentijn]

This is not what I expected as I haven't even taken any antibiotics for my infections due to the MCAS. When I first was tested in May 2014 there was just a very mild Dysbiosis and no D lactate.

I did a stool test prior to starting antibiotics, and had no bifidobacterium to start with. Vivomixx (VSL#3) seems to be helping with gut symptoms, but the test a couple months ago still showed no bifido.

 

[LivingwithFibro]

Hi Justy, how is your treatment with KDM progressing?

 

[justy]

Hi Justy, how is your treatment with KDM progressing?

Very slowly - but not because of anything to do with KDM - mainly because of my development of MCAS over a year ago. I cant take most drugs and supplements or herbs so it is very hard to get any progress.

However I have managed to make some progress in function over the past year with IV Glutathione, gammaglobulin injections and the mast cell stabiliser Ketotifen. With these in place I have had some time of being much more functional, but recently (last couple of days) I have crashed again.

This makes no sense to me as its not just overdoing (I don't think), because I can feel better for weeks at a time and then suddenly crash hard. I seem to be recovering from crashes better, which is really good. Even with the improved functioning I am still mainly housebound and using a wheelchair outside, but able to do more during the day at home and feeling less ill. Today, all crashed I am back to needing to rest all the time in bed and feeling really shitty. Seeing as this was more or less permanent for the last two years or so its nice to have some feeling better time.

 

[Gingergrrl]

However I have managed to make some progress in function over the past year with IV Glutathione, gammaglobulin injections and the mast cell stabiliser Ketotifen.

Am glad you are having some progress @justy and I have also had some progress with nebulized glutathione and Ketotefin (but have never had gammaglobulin injections.) What are the injections specifically for? I apologize if you already explained this! Did you have any allergic or MCAS reaction to the injections? I feel like we discussed this before but I am not recalling the details. The other med that has really helped me is Midodrine.

 

[justy]

Am glad you are having some progress @justy and I have also had some progress with nebulized glutathione and Ketotefin (but have never had gammaglobulin injections.) What are the injections specifically for? I apologize if you already explained this! Did you have any allergic or MCAS reaction to the injections? I feel like we discussed this before but I am not recalling the details. The other med that has really helped me is Midodrine.

Hi! I am still trying to figure out what to do with the Ketotifen. It has given me an increase in functioning, that is quite noticeable (meaning that MCAS is playing a bigger part in my health problems than we realised and has been around for longer than we realised).

However, I can only take 1/4 of a 1mg tablet. If I take less I itch all night, if I take more I also itch all night. The 1/4 mg just helps a little to stabilise the itching but not completely. Someone has suggested it could be the corn in the tablet, but I eat corn at times with no problems 9although I have often suspected I shouldn't). Really frustrated as we don't have compounding pharmacies here...

The Gamma Globulin injections (SCIG) are for treating the underlying infections, or at least helping my body to fight them a little, as I cant take antibiotics yet. I also have an autoimmune profile and GG has been used for this in the past. I also used to catch things a lot so it was thought this would stop this from happening all the time and give my body a chance.

My IGG levels and subclass levels are normal, however I have had raised IGM for some time now, but I don't know why. I recently discovered my self, by requesting my old hospital notes that about 7 years ago I was tested for immune response to pneumonia and I don't seem to make a response - and I have had pneumonia three times in my life - the past two times in the last 7 years. This could be a type of specific immune deficiency. It wasn't followed up on by the requesting Dr.