• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Search results

  1. R

    Low Dose Antigens / Immunotherapy (LDA/LDI) Lyme

    Her name is Dr Vick Blumberg, her email is : vsblumberg@aol.com
  2. R

    Low Dose Antigens / Immunotherapy (LDA/LDI) Lyme

    I guess so. Does he/she do LDI? I'm UK based so I was wondering if they do Skype sessions? Thanks! Yes she does on both counts.
  3. R

    Low Dose Antigens / Immunotherapy (LDA/LDI) Lyme

    Lemnia, would you be able to let me know who Dr B is? I'm UK based too and thinking LDI. Thanks! Did you mean Dr B in Connecticut?
  4. R

    Low Dose Antigens / Immunotherapy (LDA/LDI) Lyme

    @Lemnia did you listen? Great that Lyme was given a slot on the radio but unfortunately not long enough. Still I'm grateful it was given exposure it may prevent someone from not being diagnosed.
  5. R

    Low Dose Antigens / Immunotherapy (LDA/LDI) Lyme

    @Lemnia thanks for tip re Jeremy Vine programme. I have just caught it.
  6. R

    Low Dose Antigens / Immunotherapy (LDA/LDI) Lyme

    @Lemina Hello. It's good to hear from someone who is in the UK and having treatment with Dr B. I have a Skype app this coming Saturday. I hope it turns out that I'm suitable for LDI treatment. I have had IV & oral abx over several years. One of my worse symptoms are fatigue & muscle weakness. My...
  7. R

    Low Dose Antigens / Immunotherapy (LDA/LDI) Lyme

    @birgitte I'm not sure if Dr B is the only one who Skypes. I have joined a FB LDI group as I'm trying to learn more about the subject.
  8. R

    Low Dose Antigens / Immunotherapy (LDA/LDI) Lyme

    Has anyone approached or is having treatment with Dr B in CT? She is on the Schrader list ( I nearly said Schindler) ! Good movie- she is also on Dr V list on his website. I would like to see if it's possible to have treatment in the UK. Dr V isn't treating overseas patients according to his...
  9. R

    how can I stay in aerobic zone of exercise without knowing when anaerobic is kicking in?

    @MeSci thanks for the info. Do you receive email alerts advising of a reply to a posting? I'm not - sorry it took me so long to get back to you.
  10. R

    how can I stay in aerobic zone of exercise without knowing when anaerobic is kicking in?

    Sorry to appear ignorant but what is PEM & Ol? Thanks
  11. R

    Private group or private forum? let me know what you think.

    I vote 2
  12. R

    Help with Blood test results

    I've just had some BT results and I'm hoping someone can explain what Effective Nagalase Activity -Adult is. My result was higher than normal range. My result was 1,68 range is 0,44 - 1,29. Thanks
  13. R

    Expectations

    @Cheshire. I'm having IV abx treatment at the moment with KDM.I have just completed my 5th week. I am staying at EVC . Sorry I haven't logged on recently so didn't see that you were having an app in August. How did it go?
  14. R

    Wish me luck I start my treatment with KDM on Monday

    Hi @RML are you also having the B12s at the clinic? How's your Sunday panning out?
  15. R

    Wish me luck I start my treatment with KDM on Monday

    @Sushi Thanks for the tip re B12s. Will ask tomorrow.
  16. R

    Wish me luck I start my treatment with KDM on Monday

    Hi @Gingergrrl very interesting re B12s I could do with some of yours!
  17. R

    Wish me luck I start my treatment with KDM on Monday

    Hi @Helen yes you can buy B12 without a script. The cost is 8.50 euros for a pack of 3. It is Hydroxocobalamine. Dose 10mg 3 amp of 2 ml
  18. R

    Wish me luck I start my treatment with KDM on Monday

    Day 4 of abx treatment I couldn't wait to get to the clinic today in anticipation of having the cannula out. The drip went through with no problems. I spoke to Jan (nurse) about the painful B12 injection and he said often that is the case as the B12 is infused in oil? I was hoping to hear a...
  19. R

    Wish me luck I start my treatment with KDM on Monday

    Day 3 of abx treatment Noticeably quieter today- I was a bit earlier I got there at 9.45. One of the nurses connected me up. I asked if one of them would give me a B12 injection and she said no problem the charged would be 5 euros. I went to the pharmacy yesterday and bought 3x week of B12s...
  20. R

    Wish me luck I start my treatment with KDM on Monday

    Day 2 of IV abx treatment Not as busy today . Yesterday I noticed that there were 3 or 4 camper vans in the car park and they were still there today. I let reception and the nurses know that I was there. I took a seat in the IV room and waited for them to bring in the drip bag. One of the...
  21. R

    Wish me luck I start my treatment with KDM on Monday

    The First Week Day 1 of IV abx treatment. My appointment was at 10.00am and that time stays the same for the 1st 6 weeks unless it doesn't suit then you can change at reception, The abx is Rocephin and takes about 45 mins for the infusion. The clinic was so busy - the waiting room full of new...
  22. R

    In Belgium to see Dr de Meirleir

    @Valentijn Following on from @Sushi -I have heard that patients put a hot water bottle over the cannula if the infusion is too cold and therefore causing pain.
  23. R

    Wish me luck I start my treatment with KDM on Monday

    It's getting late now but I'm still packing for my 12 week stay in Brussels. I have found this lead up to the start of treatment a very stressful time. Besides getting the mind right it's getting all the other ducks in a row that seems impossible on some days. However I think I'm there...
  24. R

    My first appointment with KDM

    Hi @Sushi -is that the Carrefour supermarket or is their another shop?
  25. R

    In Belgium to see Dr de Meirleir

    Hi @RML my appointment is at 10.00- what time are you there? How's the treatment going in general, how are you feeling? Did I read previously that you are moving to an apartment next week? I'm trying to get everything together but I have been feeling awful this week. I'm not sure if I'm herxing...
  26. R

    In Belgium to see Dr de Meirleir

    That's good to hear @Valentijn that you are feeling better and things went better today. I look forward to reading your posts. They are helping me prepare for my treatment on Monday.
  27. R

    In Belgium to see Dr de Meirleir

    @Valentijn it's good to hear that you are about to start the 2nd course of IV abx. I hope it goes as well as the 1st did. What size/litre is your travel refrigerator? I'm thinking of buying one and I'm busy looking at them online. It would be good to get a view from someone who has used them.
  28. R

    Hello everyone

    Hi @justy thanks for the good wishes. All of our stories sound unbelievable and mine as you point out is no different. Sometimes I can't believe I have been ill for 5+ years and compared to others it is no time at all. I had treatment with Dr O in Cardiff - oral doxy for 1 year but I live west...
  29. R

    In Belgium to see Dr de Meirleir

    Fabulous news Valentijn . How long will you stay at the clinic? I'm trying to work out who to look out for when I start treatment on the 11th Aug.
  30. R

    Accomodation in Brussels while having treatment

    I'm going to stay at Eurovolley- mainly because of the location but also because some of the time I will be alone. I will feel more comfortable with having some people around who I can ask for advice if need be. I went over 2 weeks ago to have bit of a recce. It's not perfect by any means but I...