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Posts posted by Kimflow

  1. Hi,


    What would cause a return of ocd routines and moderate anxiety at bedtime/through the night only? Wouldn't you think that if there was another infection, it would cause symptoms (attack brain, formation of antibodies) all day and all night.


    Daytime is completely normal. in fact, there have been recent gains and these gains are evident during daytime.


    Thanks for any thoughts.



  2. Jan 251, Thanks so much for sharing that information on IL10. Very interesting tidbit. So it could very well be that the bacteria/etc. are congregating in the bladder causing irriation/inflammation.


    Maybe the way around D mannose calming of inflammation yet potential exacerbation of untreated hidden infection would be to have urinary antiseptics on board as well (like herbs) while using the D mannose. IN fact, the ones in the health food store do have dmannose mixed iwth uva ursi, etc. My mind just goes back to the people who have been using D mannose as a maintenance and they do not seem to end up in a worse situation....atleast the ones that I have read. Time to do more research.


    Emst, Thinking more on histamine issue you mentioned....I am pretty sure bacterias/parasites/protozoa are related to causing a rise in histamine or affecting mast cells. Maybe this is just mast cell activation in bladder like others get mast cell activation in other parts ot he body. Just thinking out loud.


    Sarojane, Did your daughter's symptoms "flare" after starting treatment? As that is what I am connecting to our urinary flares...once while beginning antibotic treament and 2 years later while beginning herbals. Or do you connect it to something else such as Spring Season or PANDAS flare? And yes, I believe that ocd/anxiety can cause the urinary symptoms to increase.


    Thank you for all the input as our kids will hopefully benefit from all of our minds brainstorming together.



  3. Emst,


    That is interesting. So in this case, it might be more reflective of the autoimmune nature of PANDAS rather than caused by herx. or bug accumulation in bladder. etc. I will have to go back and look up when this happened to us before. The first occurrence was definitely Feb. of 2012 when we had the crisis and received dx of PANDAS/Syd. chorea. Upon starting abx. treatment, through March and April, the urinary issues started. Then it just mysteriously stopped after several months.


    It was definitely again around March when it started this year and I connected it to starting herbals causing herx/bugs migrating but it also is interesting the same time as far as Spring. Ineresting. he has no other allergy symptoms.


    I can also tell you that he had a 3 days stint of it last year after getting a filling...but this was in May...so that owuld seem PANDAS flare related. It did not happen in March /April.


    What has given you relief? Have you found relief with antihistamines. Zyrtec is not tolerated here.


  4. Hi Everyone,


    Has anyone used D Mannose successfully for urinary urgency, dribbling, discomfort and a negative urine culture. My theory is that for some, when you go on antibiotics/herbals, the bacteria(all kinds as well as tick related coinfections) like to congregate in the warm moist bladder and cause irritation. I have seen this pattern before when we first started on antibiotic treatment and it triggered urinary urgency, dribbling, and discomfort that lasted several months and now again, we are seeing these issues after switching to herbals.


    Another theory I have is that they cling to bladder lining which is why some get repeated negative urine culture. Been there, done this as well.


    In my searching of the forum, I did see one or two comment on D Mannose as helping. Nothing recent.


    I also hope that since the D Mannose is absorbed quickly and shunted mostly thorugh the urinary system, it will not cause any gut growth of bacteria since it is techincally a sugar. I would imagine that other lyme/IC sufferers reporting relief would also have leaky guts and they are not complaining of bacterial growth in intestine afte rusing D mannose.


    Finally, in my searching, I am coming across something called mannose binding lectin deficiency .....big sigh....seems like several of the kids on this forum are coming up with this as well. Will be researching this now.


    Thanks for any input on the above.



  5. Hi,


    I am looking for feedback from those familes who have children that have received long term IVIG treatments and then made deicsion to stop or take a break.


    How/Why did you make the decision to stop? Did you start increasing space in between infusions or cut it cold turkey?


    If things went well, what do you think contributed to the continued upward trajectory even though you stoppped IVIG? Or vice versa....if symptoms flared again, what do you think contributed to that?


    Thanks for any input.



  6. Joybop,


    Would you expand on this part?


    I have been suspicious of the intracellular bacteria theory for years due to my kids other autoimmune issues and this really raises the flags. If that theory is true then supplementing him with vitamin D may make things worse.


    I have a friend who swears they cannot tolerate any Vitamin D even though they are deficient. What is the intracellular bacteria theory connection.



  7. Hi,


    Does anyone have any experience with using Pectin to mop up after biofilm protocol? I keep reading about Modified Citrus Pectin having been proven to bind released metals. I do not like though that the MCP products usually seem to contain Sodium and Potassium....as some of the other supplements can too and if you have ACE++, this might not be optimal.


    Finally, Interfase PLus.......read that some people who have CBS mutation do not tolerate the PLUS (EDTA). I suppose this is why they are using the Pectin?? to bind metals instead. ANyhow, just looking for a way to bust biofilm, bind metals and avoid toxins stuck in body that can flare symptoms.


    Thanks for any input or sharing of your experiences.



  8. Hi Rowing Mom,


    I wonder if you might share the biofilm protocol your Dr. follows. We are taking the bolouke on empty stomach, but not the interfase.


    In addition, I read also that many things we are "low" in are actually because we have "bugs" that eat it up. For example, I believe the magnesium is used up in biofilm for the lyme, B12 may feed parasites, etc. You mentioned glucosamine feeds lyme. do you know any other supplements and what they might feed? The only long term answer to this may be to focus on readying the body for methylation. That is the million dollar job though.



  9. Did not know about Alinia. I will have to see if you can remove the yellow coating off Alinia as you can the Valtrex. And we are supposed to move on to Mepron which someone told me has BENZENE in it.


    I suppose that the issues are related to detox, uncovering parasites/bugs and maybe toxins from die off inflaming basal ganglia additionally. Will work on it.

  10. Thanks for everyone's thoughts.


    Well, it is all so puzzling to me. Completely dry at night.


    It does seem that there is an OCD component to it that comes along with a tic. At other times, it seems that urine just comes out as he will at other times still independently go to the bathroom to do number 1 and 2. Thank goodness for that.


    I suppose it is flare related. But the issue is we are already on antibiotics and several at that. And getting IVIG.


    What else is there left to do? PANDAS makes one feel so helpless.


    I will get him checked for UTI but I don't think this is the case. He has no fever and does not seem in discomfort when voiding.

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