lfran
-
Posts
640 -
Joined
-
Last visited
-
Days Won
1
Content Type
Profiles
Forums
Blogs
Store
Events
Posts posted by lfran
-
-
Take two minutes and watch this and see what you think. Unbelievable.
-
Thank you for responding.
I will try to read more and look up the people you mentioned. I'm just out of money and ready to give up. No support from my family, live alone, on disability, and in therapy of course but it's not enough unfortunately. I'm only in my 20s, but I'm tired of being so uncomfortable.
Thank u again.
Where do you live? Someone may know a doctor or other practitioner in your area.
-
Which antibiotics is he on? There is some medical literature out there that shows that Amoxicillin can cause intrusive thoughts and other psychiatric issues. I am 99% certain that that is a factor in our family. If your son is on amoxicillin or an amoxicillin-family abx, especially at a high dose or for a long time, you might want to look into this. I know it sounds crazy, and it's not common, but it's out there (and it's even listed in the possible side effects in some of the websites I researched).
My son's OCD symptoms may have been triggered, or pushed over the edge with antibiotics. He was already reacting to food(frequent urination/yeast), low immunity(infection/colds). Then had a gum absess. Never did antibiotics before but had no options. His intrusive thoughts and behaviours coincided with these antibiotics.
We are taking the route of boosting the immune and taking out foods we think he is reacting to-dairy, wheat etc. He improved+++. But still reacting when sore throats come back so hence working to build immunity while staying away from antibiotics.
-
I just wanted to add, they talk alot about sensitivity and specificity. My understanding is, the higher the specificity, the less likely of a false positive, which is my concern at this time.
Here you go. I was interested in them because DS10 was mainly 58+ (plus we captured the antigen in his urine). Also positive for bartonella.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC86736/
The Europeans consider Band 58 to be quite significant, and you have a double positive on that.
I have posted links to the European studies recently. I thought they were very informative.
Ifran do u have a link to your post?
'
I would ditto what Suzan said. That sure is a lot of significant bands where there is something there.
Ditto on the thanks
-
Here you go. I was interested in them because DS10 was mainly 58+ (plus we captured the antigen in his urine). Also positive for bartonella.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC86736/
The Europeans consider Band 58 to be quite significant, and you have a double positive on that.
I have posted links to the European studies recently. I thought they were very informative.
Ifran do u have a link to your post?
'
I would ditto what Suzan said. That sure is a lot of significant bands where there is something there.
Ditto on the thanks
-
The Europeans consider Band 58 to be quite significant, and you have a double positive on that.
I have posted links to the European studies recently. I thought they were very informative.
'
I would ditto what Suzan said. That sure is a lot of significant bands where there is something there.
Ditto on the thanks
-
What about following up with antibody testing to see if it has receded? We also stopped rifampin (after 5 months) due to liver issue, but a simultaneous antibody test showed that he was just about negative (he'd been positive and was now on the upper end of normal).
He actually did great for the 10 days off all meds. A little bit of anxiety came back after almost two weeks. He's been off rifampin now for about 3 weeks and seems to be doing okay. Any thoughts you can send my way?
I going to pretend it is my kid in this situation and answer: The Rifampin was treating the Bart (or at the very least suppressing it - but hopefully more than that). Removing the Rifampin is allowing the Bart to regain its' foot hold. The Bart rash means you need to substitute with another antibiotic that is also really good for Bart such as Cipro or better yet Levaquin. Some docs will not prescribe Levaquin to kids. Augmentin XR will not touch Bartonella. Minocycline is "o.k." for Bartonella but not enough.
When treating Bartonella it is crucial to use a combo antibiotic approach as resistance builds up pretty fast.
In my child's situation he was on 3,000 mg to 4,000 mg of Augmentin XR for 6 months and it never touched his obvious Bartonella rash or his Bartonella symptoms. I am a little concerned that your child might not be getting the Bartonella coverage needed (as evidenced by the return of the rash). So far, my ds15 is doing well on continuous Rifampin and Azithromycin (Mon. thru Fri.) with Tindamax on weekends. If your child really can't take Rifampin anymore I would encourage you to talk with your doc about Cipro or Levaquin (if possible).
Hope you are o.k. with such a "blunt" response. Good Luck - I think the Bartonella is coming back in full force.
Update: I felt a bit guilty about firing off such a "blunt" response to your question. I edited it (above) and just want to encourage you to discuss another antibiotic to substitute for the Rifampin that you needed to stop. (see above)
I "panicked" when I originally read your question. We just tried a 2 day break from Rifampin (to try "pulse therapy") and my son's Bartonella symptoms surged back very quickly (and he has been on Rifampin for almost 6 months now). It takes a long time to treat Bartonella. The organisms replicate very quickly so "pulling up short" on antibiotic treatment raises the possibility that a resistant strain will emerge.
I do not mean to be scary - just want to get the info. out to you. I hope that you are able to sort things out.
-
That is wonderful and amazing. So happy to hear it. Gives hope to those of us who are still struggling.
You should try to get that published as a case report in the medical literature, so that mainstream medicine will start to take notice. Do you have any journal entries, videos, etc of that terrible time, to use as information for a case report?
Can I ask for clarification? You say she was diagnosed almost a year ago and has finished 5 months of treatment. Were you also treating for the first 7 months, but ramped it up at the end? Or was it a different combination of meds?
My DS10 started treatment almost 7 months ago and the big change is that the anxiety and defiance are gone or almost gone. But tics and compulsions come and go in their same, frustrating, life-impairing cycle.
-
I am so sorry to hear this. I remember how excited you were to be going there. This disease truly stinks.
Have you tried immunosuppressants? Im having trouble talking too. Im leaving France early.
-
Thanks! I will do that. (Hope he won't think I'm a kook!)
Tamistwins --
Here's this odd thing, but I would like to ask this researcher and/or ask you to forward this questions.
DS10 has Lyme and may have PANDAS. All members of our family (including myself) have elevated DNASE and ASO. I also have tonsil crypts (crevices in my tonsils, actually pretty common) which accumulate tonsil stones (also pretty common) that are disgusting and which I have been told are bacteria, etc that accumulate in the crypts and which I cough up every so often (sorry for the TMI!) (They look and smell awful).
What I have always wondered is...could strep be hiding in these crypts and would testing these tonsil stones (also called tonsiliths) be useful??? If so, I could easily send him some!!!
Would you want to ask him this, or should I? What do you-all think?
This is the response I got from the doctor explaining his background. He emailed me back same day I emailed him.
I am an immunologist who has investigated the immune response to StrepA. Recently we have some results from mouse experiments that suggest that that immune response could explain behavioral changes. There is disagreement in the medical community with regard to whether PANDAS is caused by strep infection, can exacerbate existing OCD, or has nothing to do with it. I believe that at least some cases of OCD is initiated and exacerbated by strep infections. I am a scientist, not a medical doctor and for that reason can not recommend treatment. Moreover, it appears that removal of tonsils does not always eliminate the problem (not carefully studied yet). In short Pandas is still very poorly understood. I hope to test tonsil tissue from pandas cases for a potentially virulent immune cell induced by strep that could open up the brain to autoimmune antibodies as described by Dr. Cunningham. I would need considerable lead time to arrange for the tissue, if your child ultimately has a tonsillectomy.
Hi Ifran,
Those are great questions do you have the doctors email address? It is clear001@umn.edu I think it's best for you to email him hopefully he will answer your questions quickly!
-
Tamistwins --
Here's this odd thing, but I would like to ask this researcher and/or ask you to forward this questions.
DS10 has Lyme and may have PANDAS. All members of our family (including myself) have elevated DNASE and ASO. I also have tonsil crypts (crevices in my tonsils, actually pretty common) which accumulate tonsil stones (also pretty common) that are disgusting and which I have been told are bacteria, etc that accumulate in the crypts and which I cough up every so often (sorry for the TMI!) (They look and smell awful).
What I have always wondered is...could strep be hiding in these crypts and would testing these tonsil stones (also called tonsiliths) be useful??? If so, I could easily send him some!!!
Would you want to ask him this, or should I? What do you-all think?
This is the response I got from the doctor explaining his background. He emailed me back same day I emailed him.
I am an immunologist who has investigated the immune response to StrepA. Recently we have some results from mouse experiments that suggest that that immune response could explain behavioral changes. There is disagreement in the medical community with regard to whether PANDAS is caused by strep infection, can exacerbate existing OCD, or has nothing to do with it. I believe that at least some cases of OCD is initiated and exacerbated by strep infections. I am a scientist, not a medical doctor and for that reason can not recommend treatment. Moreover, it appears that removal of tonsils does not always eliminate the problem (not carefully studied yet). In short Pandas is still very poorly understood. I hope to test tonsil tissue from pandas cases for a potentially virulent immune cell induced by strep that could open up the brain to autoimmune antibodies as described by Dr. Cunningham. I would need considerable lead time to arrange for the tissue, if your child ultimately has a tonsillectomy.
-
We were told that rifampin was the drug of choice for bartonella. DS10's titres went from positive to almost negative in 4 months on rifampin. You have to monitor liver functions, though, and it turns their urine and their tears orange.
the bactrim is making my child way too aggressive. I see her getting worse. I know others have had this happen with Bactrim. Please tell me what you tried next???? Have some of you given up on the bartonella diagnosis after lots of failures with abx. Need some support. Thanks so much. I am so disappointed. She has been on this stuff for almost 4 months. On the dose I need to get her to sleep she gets toooo aggressive. You can't live with her. Adding probiotic does not work. All meds and abx. thus far have made her more aggressive. Ugh. I hate that this happened to this lovely girl. I am so mad at the world right now. Thanks for listening!!!
-
What is rtms? Thx.
No longer interested in the rtms trial?
-
My DS10 tested with postive antibodies for Bartonella and a positive urine DOT blot test for lyme (Igenex). His Western blot for Lyme was not positive by Igenex or CDC standards, but I researched a lot and he would have been diagnosed with a postive Western blot in both Europe and China, based on his reactive bands.
He has no joint pain or other physical symptoms. His main symptoms are chronic motor tics, high anxiety, and minor compulsions. Treatment wth abx, including for bartonella, has made the anxiety mostly go away (bart is associated with anxiety). Still hoping for the tics and compulsions to fade with continued treatment.
Have you seen an LLMD or done the Igenex or other testing? There is a new test that looks for the spirochetes in the blood, but you have to be off abx for a month and it will miss 20% of the positive cases. Still, it sounds good to have proof, you know?
thank you to those that replied and even viewed the post. I appreciate the help and support. Seems like a lot have tics but also some type of bone pain or other typical TBI symptoms. I am not sure my dd has any of the "typical" symptoms. If I was being honest, I would have to say that my dd is very forgetful and "doesn't listen" a lot. I have often wondered if this is a symptom too. I can tell her something and she seems to be paying attention then moments later she proves that she was not at all paying attention. How much of that is just typical 10 yr old behavior though I have to wonder. I was told that a dry cough can be a sign of babesia too which is something my dd does a lot. It is mainly with physical exertion like running or playing around with the dog etc. She has done this for years, wonder if this is a symptom too? Not sure of much anymore.
-
I second that. Dr. T is great for emergencies and getting people started. I would contact him ASAP.
I would e-mail Dr. T (e-mail address is on his website) and PUT AN URGENT FLAG ON IT. Or you could call his office, but in my experience e-mail is faster. He'll get you in as soon as he possibly can--probably today or tomorrow. And I don't think he will be offended at all if you then switch to Dr. B. Just hate that you would have to spend the money twice, but if it's an emergency, you might have to.
-
So sorry to hear this. You probably know this, but hyperthryroidism can cause significant weight loss even with a good appetite. This happened to me when too much meds for my hypOthyroidism put me into a hypERthyroid state.
-
THANK YOU!
Our non PANADAS son had a T&A - we hadn't met our deductible yet, so we had to pay out of pocket.
Hospital bill - $4,026
ENT - $800
Anesthesiolgist - $600
-
Here's another study, looking at percentages for single band Western Blots, this time from China.
http://www.ncbi.nlm.nih.gov/pubmed/21112481
Here are the relevant bands. You can see that p58 is included (with a specificity of 99.4 for IgG, now we're looking at 0.6% false positive rate for the presence of a single instance of these bands (for IgG, they don't include p41).
RESULTS: The following interpretation criteria were recommended: for IgG, at least one band of P83/100, P58, P39, P30, OspC, P17, P66, and OspA; for IgM, at least one band of P83/100, P58, OspA, P30, OspC, P17 or P41. In addition, syphilis, leptospirosis and other related diseases should be excluded when the positive band is P41 in IgM. For IgG criteria, the sensitivity is 73.2%, the specificity is 99.4% and Youden index is 0.726; for IgM criteria, the sensitivity is 50.6%, the specificity is 93.1% and Youden index is 0.437.
-
Actually, some doctors think 58 is very important and it is very indicative of Lyme in Europe.
I have posted about this recently, but here is a link to the info re: the European labs.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC86736/
Today I got my results back for Lyme. The IGM negative (but band 83-93 + marked suspicious). The IGG is Positive based on Igenex. These bands are positive: 34+, 39+, 41+++ and 58* (this is not an important band). Does this mean I WAS exposed to Lyme but NOT currently infected? I gather its likely my son got it from me. What do you think? Andrea
-
Thanks!
Just curious -- is your DS taking it once per day or twice per day? I had read somewhere that rifampin works best at night (can't imagine why). Also, how often are you doing liver monitoring? We are doing it about once a month now -- is that what you are doing also?
Wow! Congratulations - that is good news for you and encouragement for me. We are 4.5 months into Rifampin for Bartonella and also seeing improvement. We do not have lab tests to track as our ds15 had an obvious Bartonella rash and all the symptoms that go with it (rash is considered 100% diagnostic). It is encouraging to see that your time-frame and labs are "correlating" with our clinical picture.
I've been told that Bartonella needs at least 6 months to be treated with Rifampin. I've talked with a couple former Bartonella patients who were treated for a year... I think we are going for a year as my ds15's symptoms were "over the top" - but we will see in time if we need to go that long.
Thanks for posting the good news!
-
Hi all.
Just wanted to post that after 3.5 months of rifampin, DS10's bartonella titres (IgG) went down from 160 to 40. <40 is considered negative. So...maybe just a little more treatment? Or do any of you suggest alternative laboratories to confirm? Both tests were done via Igenex.
Thanks!
-
Yes, I had to read it over several times, but what I got from it was that European labs use different bands to diagnose a positive Lyme diagnosis than do either the CDC or Igenex. There are different strains of Lyme that show different bands more frequently, and then the authors put together "best" rules that could be adopted as a standard, based on running their samples against all the rules that were used by the different European labs.
Table 10 was my favorite table, because it showed that p58 and p41 together give a positive Lyme diagnosis with only an 8% false positive rate from Lab A or a 2% false positive rate from Lab B, with a 6% false positive rate by the authors' suggested European Rule 5 or 2. (I am only concerned about false positives at this point, because we are already treating my son, so I want to make sure that he does indeed have Lyme). But the false negatives were 20% or less for these rules, for those who are interested in that aspect.
I want to make sure I really understand this article, because it is important to me. Are there specific areas that you found problematic? If so, do you mind sharing?
Thanks!
Hmmm. .. I have IgG 58++, but my kids don't.
I also found it hard to really understand the article. . . .but very interesting.
IgM: 41+
IgG: 31 IND, 39 IND, 41++, 58++
Bartonella negative (Igenex)
-
Can anyone tell me how much it tends to cost to have a tonsillectomy (either with or without insurance)?
And does blue cross tend to cover it for PANDAS kids? I have the option to switch to BC soon, but not sure that I want to, so wondering how much T&A costs out-of-pocket if I can't get my HMO to approve.
-
DS10 has lyme and bartonella (confirmed by antibodies). Has been on rifampin for bart almost 4 months. Will be getting repeat bartonella antibody test results back next week. But, how does one decide to stop rifampin? Is it based on resolution of symptoms (which may overlap with Lyme? Or when antibodies decrease? Or...?)
Would love to hear other people's stories before our results come back.
Thanks.
Glutathione video - OMG
in PANS / PANDAS (Lyme included)
Posted
I know this is Parkinson's and not Lyme/Pandas/tics etc, but I thought this video was amazing.
Take 2 minutes and watch it, and let me know what you think.
http://www.wellnessh...t.asp?id=339544