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Treatment opinions - pulse ABX or stop?

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Posted 10/1/2017 5:12 PM (GMT 0)
Hi All - I'm up against what seems to be an on going question in my lyme treatment. To stop ABX or to pulse them? I had a string of 5 or so relatively symptom free days in the last week, and my LLMD suggested I either stop or pulse the ABX. I've been on herbs for 8 months, and ABX for 10. She's of the opinion that if ABX haven't solved the issue yet, it may be candida or other systemic issues that are continuing to drive my symptoms.

I was a bit wary about stopping all together, so we decided I would pulse 4 days on, 3 days off. I'm 3 days into my first round of 3 days off and I'm starting to waiver on whether or not to pulse. I'm kind of excited to not have ABX in my body; however, I'm not feeling awesome, but I'm not feeling terrible. I'm also obsessed with how I'm feeling, which is stirring up anxiety, which is probably making me feel not so great.

A part of me wants to see what happens off of the ABX and really focus on my diet and work on adding more immune support, and the other part of me has a lot of fear about letting the ABX go. I'd love to hear opinions, as I'm really on the fence.

Thanks all!!!
Posted 10/1/2017 6:24 PM (GMT 0)
You've just finished your 3 days off...and are going to the 4 days on now...right?

So, I would continue...see what happens on the 4 'on' days...

Give this cycle of 4 on 3 off a few weeks and see how you feel.
Posted 10/1/2017 7:39 PM (GMT 0)
Most doctors continue to treat 2-3 months after all symptoms resolve. I would suggest continuing to pulse for at least 2-3 more months.
Posted 10/1/2017 8:36 PM (GMT 0)
As the day has gone on, I'm starting to feel worse. I'm going to give the pulsing a whirl - I think that is the way to go. Thank you for your feedback!!
Posted 10/1/2017 8:38 PM (GMT 0)
1. BostonM stated that the symptoms have not resolved

2. Very few LLMD get patients to the point of symptoms resolving and although in the very rare case that it does happen the idea would be to continue the treatment for a while longer as with any infection.

3. 10 months of antibiotics are a longer recommendation for a disease than any other disease on earth. even TB.

From my point of view, after my long term treatment with antibiotics and understanding more about how the disease works I think we should turn focus to immune dis-regulation. What needs done? Im not sure. The most up to date suggestion is some form of Rituximab and antivirals for latent viruses.
Posted 10/1/2017 9:02 PM (GMT 0)
@MAF249 - i definitely agree about the immune system piece. I'm going to add in more immune support in the coming weeks and see how that helps. I'm planning on adding a transfer factor and colostrum. I'm open to other recommendations!
Posted 10/1/2017 9:06 PM (GMT 0)

MAF249 said...
1. BostonM stated that the symptoms have not resolved

2. Very few LLMD get patients to the point of symptoms resolving and although in the very rare case that it does happen the idea would be to continue the treatment for a while longer as with any infection.

3. 10 months of antibiotics are a longer recommendation for a disease than any other disease on earth. even TB.

From my point of view, after my long term treatment with antibiotics and understanding more about how the disease works I think we should turn focus to immune dis-regulation. What needs done? Im not sure. The most up to date suggestion is some form of Rituximab and antivirals for latent viruses.


Whose "up to date suggestion is some form of Rituximab"? Who are you referring to?

I would not suggest an immune suppressing drug to be taken with chronic lyme.
Posted 10/1/2017 9:49 PM (GMT 0)
studies done show how borrelia OspA effects b cells. we also know that OspA, without infection of borrelia, from the Lymrerix vaccine causes the same disease as late stage lyme disease... we can conclude that treating B cells with Rituximab would deplete the flawed B cells that are causing our illness.

The issue with this is that Rituximab will cause proir infections to become present again. This is then theoretically surpressed by the use of antibiotics, antivirals, etc.

we are sick because of OspA(among other things such as damaged tissue) and not directly lyme disease bacteria. Other spirocheteal diseases can be cured with antibiotics. The issue is clearing the bacteria will still leave us with a broken immune system via B cells.

look into B cells and CFS/ME and you will gain a better understanding of what past infections can do to a persons future health.
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