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Off to see KDM and starting IV antibiotics, right or wrong?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by alexa, Sep 20, 2013.

  1. Lala

    Lala Senior Member

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    Those of you, who are doing IV antibiotics, do you have PICC line or cannula? 12 weeks is a lot for veins.

    Would you also mind sharing cost per week of IV at Hummanitas?
     
    Orchid likes this.
  2. alexa

    alexa

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    i will pay 160 euro per week, the real cost will be housing and transportation, i will be doing 6 weeks so that is quite a lot but not the most i have spent of this dammed illness.

    i am looking at housing now, but mostly soo beat, i really pushed myself this weekend and i am not even close to recovering from that ( my sisters bachelorette party!)
     
    justy, Sushi and Valentijn like this.
  3. Lala

    Lala Senior Member

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    Thanx alexa.
     
  4. Clodomir

    Clodomir In hibernation mood

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    Better ask him, i case not needed for you.
     
  5. Does anyone have any updates to give on this? (IV antibiotics with KDM for CFS+possible infections) And any cheap places to stay while taking the treatment? I'm thinking of going to see KDM from the UK, I got a lot better on 2 weeks of IV antibiotics for appendicitis, but relapsed 6 weeks later.
     
    justy and vli like this.
  6. maryb

    maryb iherb code TAK122

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    Mathew you may be better tagging @alexa and @Clodomir like this, for a quicker reply.
     
    vli likes this.
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    He only gives IV antibiotics when he finds certain intracellular infections and then only to patients he feels would respond better with IVs. Alexa may have some guidance on rentals as she has rented in Brussels.

    Best,
    Sushi
     
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  8. Clodomir

    Clodomir In hibernation mood

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    @Matthew Jones
    Hi,

    I had 12 weeks of ABX IV, but it was for Lyme not for cfs, It is maybe better to see KDM, ask for tests (be carefull it is expensive), and see what he propose. I had ABX IV, but my hubby (also Lyme patient) had only oral ABX and now we are both with samento and banderol... and we are feeling better.

    have a nice day

    clodomir
     
  9. Daffodil

    Daffodil Senior Member

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    i have been sick over 20 yrs. i did 6 weeks of azithromycin and 4 weeks of rocephin (i could not tolerate it well). IV antibiotics do affect the gut.

    rocephin was like a miracle drug for my brain but soon after stopping, i relapsed badly. stiff neck, aching lymph nodes, returning of brain fog and brain swelling.

    i wish i could afford to do and could tolerate IV Rocephin for several months, along with IVIG. i wonder if that could cure some people.

    if i were wealthy, i would do IV rocephin and IVIG for years, all the while getting fecal transplants to prevent c diff. maybe i would do 2 IV antibiotics at once.

    now that i know rocephin does what it does for me, i really think getting of lyme and rebooting the immune system might work....maybe...
     
    Last edited: May 4, 2014
  10. alexo

    alexo

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    so whats the verdict on KDM treatment for lyme... any others can offer insight

    I have been sick almost 4 years since october 2010 at 21 years old

    Being followed by klimas & rey , pretty much diagnosed with the full house like most people , low NK , messed up cytonikes and virus titters thru the roof.

    saw meirler, chia and a bunch of other infectious disease/rheumatologists etc... they all had different theories

    been on equilibriant and immunovir since the beginning , all sorts of supplements ... now im trying some tinctures like cats claw and such because meirler diagnosed me with late stage lyme disease...

    I cannot spend 6 weeks there but a part of me sure wants to and give it a shot... can't deal with these fucking crashes anymore and everything that goes along with it... I wanna feel awesome again.

    I say go and try you've got nothing to lose unless some of you think the IV is harmful...

    if you are not sure tho you might wanna try tinctures(drops) like me although I havent seen much of an improvement yet... maybe it will show in the labs and might give me some hope. We are all so confused sometimes its hard to even realize if we are doing better or not...

    I hope it works for you and please let us know because ill be on the first flight out!
     
  11. Valentijn

    Valentijn Activity Level: 3

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    I've done my first 6 weeks of IV antibiotics at home with nurses coming in, and haven't had any side-effects from the ceftriaxone itself. Though I did have a standard Herxheimer reaction to the toxins released by dying off spirochetes during weeks 2-4, which sort of got more intense and would hit earlier in the week each time. It wasn't a constant thing, but I was pretty feverish and extra wiped out - it's good to make sure you have some extra help on standby.

    I've had no GI problems at all, but also have been taking digestive enzymes (Creon) and probiotics (VSL#3). But the cannula (catheter) for the IV can be painful difficult to get in, annoying and restrictive depending on where it goes in (only my hands or wrists veins work), and leaves a big bump behind afterward for a few weeks when it comes out. The cannula is only in for about 97 consecutive hours per week (4 days + 1hr) for the first antibiotic, and 77 consecutive hours per week (3 days + 3 hours) for the second antibiotic.

    It's not really possible to shower while the cannula is inserted, so that's at least 4 days in a row without showering, and then struggling to get a shower in while maybe feeling pretty poorly. My mom washed my hair in the sink one week when I badly needed a shower but was too weak and feverish for it to be safe for me to walk up our steep European staircase.

    I think I'm doing a little better physically, but it's hard to say - it's been obscenely hot and humid here lately, so I'm mostly lying around regardless :rolleyes: Cognitive function seems to have improved a lot. It started when I began taking 4ME (Nexavir), but seems to have improved even more soon after starting the antibiotics - though the extra IV fluids may be responsible, rather than the IV antibiotics themselves.

    So I've done 6 weeks with one IV antibiotic and have another 6 weeks to go with a different one. I'm feeling a little better, but nothing drastic yet. The IV antibiotics are rough at points, but bearable, especially if you're accustomed to a fair bit of pain and suckiness as an ME patient. So far it seems like a nicer option than a much longer course of oral antibiotics and the GI problems that tend to come with that - but it's still not easy.
     
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  12. Valentijn

    Valentijn Activity Level: 3

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    When I went to his clinic for the first week of IV antibiotics, it was 40 euros per daily session. That was for the rocephine which takes about 30 minutes, and is administered 4 times per week. I don't know if it costs more per day for the azithromycin, as it takes 3+ hours.

    For comparison, the home health care organization I use in the Netherlands charges 100 euros per hour, with one hour being the mimimum billed time. So we're paying 400 euros per week for a nurse to come to our home, versus 160 per week going to Dr de Meirleir's clinic.
     
    Last edited: Jul 21, 2014
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  13. Clodomir

    Clodomir In hibernation mood

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    @Valentijn
    Happy to see that you are better! So do i!
    Yesss!
    You will see in a few month that it is slowly ( very slowly) going better and better.
    Sometimes little crashes, but less and less.
    For me it is the beginning of something new, the end of the tunnel.

    All the best
     
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