LYME... how many on IV abx, if any, here?

Discussion in 'Fibromyalgia Main Forum' started by victoria, Mar 5, 2006.

  1. victoria

    victoria New Member

    Just wondering as my son has not shown any real improvement with 9 months of oral abx; the clinic recommends trying IV rocephine at this point.

    For those of you who don't know about what's going on, we had our son tested finally for Lyme after all other 'regular' blood tests showed nothing - he was basically showing many of the same physical symptoms as me plus some worse, plus brain fog and memory problems.

    I remember Jill/Firecop saying the IV really made a positive difference for her after 9 months of oral abx didn't help her either... that's encouraging to say the least, I am keeping my fingers crossed.

    Looking for some support here...

    If you have done it but it still didn't help, let me hear that too, and what if anything, has...

    Thanks,
    Victoria

  2. victoria

    victoria New Member

    I bought the book about using herbs, also rife machines... haven't had a chance to read either really yet... live has been hectic - have you had a chance to read it, and how does it compare to what you're doing?


    Also bumping, for more responses?

    Thanks,
    Victoria
  3. hopeful4

    hopeful4 New Member

    Victoria,
    I'm on the oral azithromycin right now. Too early to tell if it's working well enough.

    I think you may learn a lot more about people's experiences with IV ABX by checking out lymenet dot org.

    Is your son also taking other supportive medicines, such as cumanda, artemisinin, samento, or others? Are you working with an LLMD?

    Wishing that all goes well for you both.
    Hopeful4
  4. victoria

    victoria New Member

    He is going to the best in the southeast, in NC; he tested positive both last May and last November as having active infection, still!

    He is taking supplements to boost immune system, but not herbal support...

    I am looking at other websites as well, thanks, ilads is how I found the link originally to I think the same website you're talking about... and how I got the referral to the doctor in NC.

    Just wondering about those of you here, since many have tried...

    And I know there is a subset of pts on the Marshall Protocol who have failed abx, both oral and IV, who have been dx'd with Lyme and are improving using the MP; the MP is what I'm on altho I have not paid for the testing for myself - so expensive, it's a travesty, really! - and I have shown improvement myself...

    (but there's no way I can convince an 18 yo to give it a try anyway...)

    all the best,
    Victoria

  5. HppeandMe

    HppeandMe New Member

    Victoria-

    It is funny that I just noticed your post. I just posed the question about Lyme becuase many of our symptoms match right up with Lyme symptoms. I see a LLMD and she put me on IV Rocephin mostly due to symptoms. On Thursday I will get a Picc line inserted. i hope I am doing the right thing but it is my last hope. I have been on a different IV for a month called a peripherial line. I've had two good days which I haven't had in a long time but I don't if is just a cooincedence. Althoug some others who had Lyme have told me that if it is Lyme it will clear up in about 6 weeks or so on these IV's my Lyme doc says it can take as long as you have been sick.

    Who knows. I do believe though if your son has Lyme he will be ok after the IV abx and you too should be tested. There was a family of 9 in my state in an article not to long ago where the whole family had Lyme and they were all treated with IV Abx and most have almost fully recovered.

    I'm not sure where you live but there is a big conference featuring Dr. Burrascano on 4/1 & 4/2 (he is one of the top Lyme docs if not the top). He is supposed to shed light on the disease and says if you have CFID's or Fibromyalgia that you should attend.

    Good Luck! I really feel it in my heart and I don't say this often but I feel that your son will be ok. Keep us posted!
  6. redsox10

    redsox10 New Member

    Hi Victoria,

    I know how hard it si to see our children suffer. I have 2 with Lyme. So sorry your son is ill.

    My daughter did not show much improvement the first 12 months on ABX. The last 4 months she has shown some improvements. She has a long way to go but is able to do some normal teen things again. What orals has your son been on?

    Make sure you keep a close watch on his gall bladder when he is on the IV's.

    Healing thoughts come your way.

  7. victoria

    victoria New Member

    he is going to have the PICC line inserted... our main immediate problem is finding a local doctor to back him up;

    I hope your 2 good days is not an accident but a result! My DH wanted me to go to the same LLMD as our son, but he has had a waiting list for the past 6 months anyway...

    And for me I am also worried about dong the IV abx since I have had major problems in past with candida and seem like I'm increasingly allergic to things...

    I'll be watching your posts to see what happens with you as well!

    Thanks again,
    Victoria
  8. victoria

    victoria New Member

    Yeah, having one's kids ill is the worst... I will gladly spend the $ on him first, me second, that is for sure!

    he has been on a variety of combinations to see how he responded; his strongest response was to the first month, which was biaxin and I think minocycline... 3rd week Flagyl is added in to dissolve cyst form... but he repeated this combination this past month and still did not have much of a herx or felt any better during the 4th week off the abx...

    they have done liver tests, don't know about gall bladder, but so far so good in those terms... the blood work however apparently showed certain things, I believe the dr. called it 'immuno-complexes,' that show he is fighting a lot of infection and he stronglys suspects a secondary infection altho the testing for the 5 most commonly associated plus mycoplasma have all been negative.

    Bottom line is anyway he has to be treated, why spend even more $$ for tests just to find out what else - we've already spent around $8,000 out of pocket, mostly on testingl; the lyme just keeps showing up as active and immune system as inflamed so to speak.

    Is your daughter taking oral abx only? Are they going to consider IVs? Just curious...

    Thanks again! Looking forward to read about her progress as well.

    All the best,
    Victoria
  9. victoria

    victoria New Member


    hoping for more responses...
  10. ANNXYZ

    ANNXYZ New Member

    I am praying for you and your son. This illness seems to defy any human comprehension.

    I am also discouraged and wonder if there will ever be a way to find lasting improvement .

    I would like to share that in my own case I do get a strong die off reaction to samento . The FFC's are using
    samento and cumanda with some lyme patients , so it is worth considering . It seems that the only way to approach this disease is the trial and error fashion, as NO one size fits all therapy exists .

    I will pray today that you are led to the right approach.

    Are you still on the Marshall Protocol? Is it making a significant difference for you ?
  11. victoria

    victoria New Member

    I still am, see my post above:
    ----
    "And I know there is a subset of pts on the Marshall Protocol who have failed abx, both oral and IV, who have been dx'd with Lyme and are improving using the MP; the MP is what I'm on altho I have not paid for the testing for myself - so expensive, it's a travesty, really! - and I have shown improvement myself...

    (but there's no way I can convince an 18 yo to give it a try anyway...)"
    ----

    However, I just haven't been able to proceed with it due to "LIFE" getting in the way - besides son's problems, have inlaws living with us now, they're 95 & 88, MIL has dementia... I can't afford to experience herx, but gonna have to anyway... eventually.

    How are you doing these days, any better?

    all the best,
    Victoria
  12. ANNXYZ

    ANNXYZ New Member

    I am on doxy and samento and can not tolerate high doses of either without a lot of suffering .

    I am not too sure there is a cure for lyme at all , when it has gone undiagnosed for years and has invaded so many white cells . It is discouraging . I am so sorry that you and your son continue to struggle so much, and that you are now so taxed with others who ALL seem to be needy around you . You REALLY have a VERY FULL PLATE!