pathfinder
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Posts posted by pathfinder
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Tried but no effect
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thanks pandas16
interesting
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Hello petie
My son did his iVIGs at Crescent health center at Santa fe Spring near Norwalk. They offer home infusion option as well. ( they send a nurse to your home) Dr. L prescribed and forwarded it to them and they contacted us.
My son was very non Lyme as per igenex tests but still pursuing lyme treatment anyway because of his high mycoplasmas P titer with bartonella positive testing result. ( not to mention high ASO titer)
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My son is also going for T&A in early Dec.
I do not know if my son could be of any help as he is already 18.
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Hello pandas16
How is your TSO going?
Can you share rTMS treatment information with rest of us?
Since I heard that you are tabling rTMS, I started to take interest in that treatment and I found that there are 2 different rTMS treatments. One with ribbone shape that goes on front of head and the one with ice cream shape that goes on left side of brain. Which one are considering?
Thanks pandas 16
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I also pray for your son's fast and full recovery.
I am very happy that you came back to post. I was wondering about you.
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have you stopped TSO then? Just curious.
We are still doing TSO
He hosted his 10th dose yesterday
How are you doing with TSO?
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My son had extremely high ASO & Anti-Dnase (450+/900+ consistently), for a year after abx, in conjunction with 8 months post T & A. The doc said that she thought that Strep was getting thru Augmentin and we switched to Cefdinir. It may have been luck in lack of exposure or the cefdinir being more effective, but he had high titers still in 3/11 and by late June they had finally gone down. Coincidentally, we just found + Bart & Lyme a few weeks ago. The Strep titers continue to be close to normal range. Hang in there!
Thank you Beeskneemommy
Would you say lowering ASO titer helped your son in anyway even with L& bartonella in the background?
My son also tested positive for bartonella ( probably lyme but definite) along with mycoplasmas.
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hello everyone
I have questions for you.
My son was tested high on ASO titer (IGG not IGM ) about year and half ago at age 16.
He had all the classical symptoms of pandas along with high titer so we went after pandas treatment aggresively with some success but some of his physical symptoms that were that of lyme and co so we moved on the that area ( lyme and co treatment is long term with wax and ween type of treatment so cannot declair success as of yet but we are at the right place) I am retabling pandas issue because our lyme dr ran my ds (now 18) ASO titer few weeks ago and it came up high once again. That is total of 4 ASO titers tests in last one and half yr with high as results. They are not teriibly high but high all the same.
Beginning of pandas treatment ( HD IVIG+ABX) his ASO titer was 360 and next 3 tests was 300 to 320.
Is ASO titer at this range means he had strep sometime in his life and his has antibody for it and he is just a strep carrier?
Do we target it to come down to within normal range in order for one to declair victory over pandas?
If not, I know mycoplasmas P titer has to come down before one can say he is winning the war why is it different for ASO titer?
Can any of you relate success pandas story with lowering ASO titer or success story with high ASO titer?
thanks guys
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Thank you all for your inputs but I will keep him with Cal doctors until I find someone near his school for now.
He is doing well (knock on wood )
To Pandas16
How are you doing with TSO yourself?
Will went down the hill with last dose (7th, I think)
I was so so disappointed but he is doing better with current one.
I have 2 more doses left and if I don't see improvement by then, I am thinking of stopping TSO.
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Hello WIlma
What about giving seroquel at a different time than dr recommended or give her less than dr prescribed and build her up to it?
As good of a dr he/she maybe but he does not know of every detail of your child so it is up to us to figure out details of how the medication is dispersed.
It is like throwing balls to a wall to see if you can hit the bulls eye with given balls.
Doctors are giving you the ball but it is up to you to target it at light spot and the right
Pathfinder
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Hello Lyme people
After agonizing and sleepless nights, we decided to send my just turned 18 hrs old pandas/bartonella/probably Lyme son to a college in upstate NY.
He is leaving not only his home and family but comfort zone of pandas/Lyme doctors of southern Ca. (you all understand how uncomfortable and annoying it was to be seating in a doctors office who has no idea what pandas means or not believing lyme could cause ocd.
I am looking for a Lyme doctor who also understands pandas in Rochester NY area. My son is starting his orientation tomorrow so we just flew in last night.
He will go back to his doctors when he comes home for breaks but for my own peace of mind I would like to get some help from this area as well.
Would any of you know of such a doctor in this area?
We are at Geneva NY near Rochester.
Thank you in advance
Pathfinder
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Hello pandas16
I have 2sons, older one is a high achieving normal young man and younger one is with pandas but normal intelligent( He is not in your caliber in term
intelligence but I think you are a remarkable young woman so no comparison there) So in many ways, my son's pandas case is very similar to yours and yes I have been looking for stem cell as a possible next step for my son even though it is a long shot at this point.
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Hello follow lyme people
I want to update my ds's (18) progress with Bartonella battle.
He had a very strange reaction to rifampin so after one and half month of using it we discontinued.
Rifampin pros---- He acted very mature, aware, and calm.
cons--- Occasional intrusive/grudge kind of OCD ( 2times a week, maybe), depression, and fainting spell.
Because my dr and I got very scare of depression side rifampin effect we switched to Levaquin and he did Levaquin alone for one and half month.
Levaquin---- no side/herx effect and OCD was less in intensity and frequency but a bit ADHD like ( once a week for 20 mins OCD, maybe)
But because there was still OCD, dr added Bactrim for last 2weeks.
Bactrim--- no side effect so far and OCD not seen yet but still sort of ADHD so I am thinking of adding diflucant back.
He is definitely getting better but I feel there is a huge space before I can call it a victory. He would be perfectly fine one moment and then he would turn around and become very loud and bad mouthing about my touching his cell phone or his computer with thirty hands for about 20 mins or so and would act as if nothing happened again. His OCD has always been fear of germ which makes me think pandas/pit is manifesting in OCD as self protective way.
I think I used to suffer watching my son suffering with OCD when he was younger but now I am suffering because I worry if he could stand alone in college come this Sept. He is improving but I am not??? I am OCDing?????
Nevertheless, life is soooooooo much better as his OCD is a rare occasion versus everyday living condition before doing pandas/pit/lyme treatment.
I am going to pursue the latest trend in OCD ( learned from this forum)with glutamine and KPU as well. (Whatever it takes, I don't want to miss the bus)
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Hello Priscilla
I am so very happy that your dd is doing well.
Hope to see in one of these meetings in OC.
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My ds's pandas dr recommended moxxor for my ds as well but I just never got around to it yet. ( too much going on with too many meds and suppls)
Keep us updated with how your dd is doing on moxxor.
We might have same pandas dr?
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Of all that happened to my ds, I am sure of one thing that is all his problem started with strep and augmentin/IVIG really helped us to see what was going on with my ds. I also believe that if we did not treat that chronic strep with those treatments, TSO would not have been any help to my ds at all.
I happened to believe bartonella is another one that has to be treated ( rooted out ) before any things else could work and TSO is no different.
I know I am sort of gambling at this point doing TSO with bartonella treatment but I feel like I don't have much to lose except $$$ with TSO.
We attained 90-95% with pandas treatment but still moved on to treat bartonella ( maybe lyme) regardless of herx symptoms and set backs because I believe treating Bart will get us that magical 99% we are dreaming of.
pathfinder
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Levaquin interferes with TSO??? Can you elaborate a little on that please?? ( Because I had to take it for a week) It does not say anything about that on Biomonde and the president of Biomonde said it "should't be a problem" according to Stewart. I'm surprised I thought you said your son was doing great on TSO. In the end I was sort of under the impression that you chose one or the other, either you tackle all the bacteria or balance all the bacteria...(not both) Did you understand differently. The whole idea with the hygiene hypothesis is that we naturally co-exist with organisms...
Are you using anything like tindamax?
Hi pandas 16
I felt that my ds's bartonella has to go either with TSO or without. We were approaching my ds's OCD( mostly someone touching his things, someone's saliva getting to him while talking kind of OCD)and rage over a little thing ( if I misunderstood him he would have a fit)with bartonella medication and his gut issues ( gas, frequent bowel movement, skin rash in short food allergy to almost everything)with TSO. I think it was working very well as his gut issues were all gone and his OCD was at minimum until we introduced Levaquin to his system. We are on 5th week of levaquin and last 2 TSO were not effective at all. His gut issues were back in full force with OCD/rage so I was thinking levaquin was preventing TSO hosing in my ds's system. ( what other answer would there be since they were working really well before?)
But situation changed since yesterday. We went to see our Dr and he changed levaquin to bactrim so we will stay on with TSO.
I was told by an email friend that one gets worse before getting better ( by 7th or 8th bottle?) and since we never had a getting worse stage before maybe this was what it was?( always hoping!) My ds is to start a college in less than 2months and we need something very quick hence my aggressive approach to treatment. I really want Bartonella gone already!!!!!!!!!!!
We never did tindamax yet. SO far ignex test did not prove my ds has lyme so ds has only mycoplasma P, bartonella, and high strep titer via special lab.
pathfinder
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Thank you SFmom for posting this.
It could have been a story of my son past 9years.
I feel so lucky that we know what it is that we have to do but at the same time I am saddened that it wasn't sooner.
I feel sooooo guilty that I did not believe my son when he complained about his toe hurting, sole hurting, headaches, shin/leg hurting, fatigue and so on. My son's psychiatric told me that it was all in my son's head. ( of course, all specialty doctors told me nothing was physically wrong with my son as well) Many ADHD books I had read listed unknown somatic complain as one of ADHD symptoms. If I did not find my way into this forum, I don't know where my son would be today. Thank you again for all your support and help.
Sometimes I still cannot believe all this is happening to us. When my son was dxed with pandas and mycoplasmas P last year, I thought they were bad enough but lyme/bartonella is something so scary and sinister, it is just so unbelievable that he has all of these in him and I did not know of this for last 9years.
pathfinder
Hi Pathfinder, I thought that your son was using helminthic therapy with TSO? Do you no longer believe in the hygiene hypothesis in that you are treating intracellular bacteria? It seems like your treating it aggressively, are you having more success with that?
Hello pandas 16
It is so funny you asked that question today as I decided to suspend TSO treatment for now. ( My ds drank a 2500 bottle just a week ago which makes it his 8th bottle) My ds has been on Levaquin for about 5weeks and we learned that Levaquin is working against TSO hence returning of allergy, gut issues so I am going to stop TSO altogether for now until we have some answers with Bartonella. We will continue with TSO once we know what is happening with his gut. We might have to choose one treatment out of TSO or Bartonella. Everything is up in the air right now.
I have been following your posts and am very grateful as they are very helpful for us.
thanks
Pathfinder
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My ds was tested positive on Bartonella test via Quest lab as well and it was covered by insurance. I think the test is around $200 without insurance.
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I don't know if I could be much help here but my ds (17) who had very little tics ( very private vocal tics) before IVIG began to have a significantly worsening of tics after IVIG.( again vocal--humming like tics) Our last IVIG was done about 6months ago and his tics became once again like private, unnoticeable kind of thing for last 4-5 weeks.
His tics were pretty bad when they first happened about9 years ago but as he got older, his tics subsided and became almost unnoticeable.
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http://www.lymenet.de/symptoms/cycles/evalsum.htm I posted this yesterday as I was thinking about my dd flares. She is pretty consistent at every 4 weeks. I found the analogies very interesting, and it solidifies my belief in the link between PANDAS and Lyme..... INFLAMMATION as the niches leak (sound familiar from PANDAS) I have been so topsy turvy over this last year trying to get her well, but now that we have stablilized treatment over the last several months it allows me to notice the pattern without all the other variables. The flares certainly come about every four weeks, but are less severe. My point is, I now see the herx as the inflammatory process rather than a random toxin dump. HMMMMMM
Hello Priscilla
Good article.
I thought I heard someone saying that there is also correlation between full moon and lyme.
I personally think altitude has something to do with lyme as well. ( at least the kind my ds has)
I always noticed my ds's pandas/bartonella symptom flared up when we were at certain altitude ( ski or fishing trip to big bear or mammoth lake often and every time when we were coming down from mountain, he would have a complete break down---I would spare you the details)
My son and I went to New York a couple of weeks ago and whenever we were landing, he once again had total melt down. ( this time he was weeping and shaking his head--totally miserable) This has happen too many times for me to ignore as coincidence. I really think there is something with altitude and my son's problem. I am going to have my ds ( poor guy) do hyperbaric chamber therapy at Irvine this summer for the same reason.
If I throw enough stones at it, at least one will hit it, right?
Over all my ds is doing fantastic, how about your dd?
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I know this has been a topic often discussed on the forum but I thought I'd share our LLMDs perspective on our son's recent herxheimer response to Rifampin to provide perspective.
Our younger DS was rotated to rifampin almost 8 weeks ago. Since starting we've seen the return of rage behavior, OCD blips and total potty training regression. He herx'd almost immediately from the rotation with rages starting on day 2, 4, 5. We also noticed OCD return and build in frequency and intensity over a four week period. Rages became a daily problem in the 4th week. The potty training regression didn't occur until we were in our 5th week. We saw no improvement in symptoms, only worsening until around the 4th week of rotation. In the 4th week we did notice he was now able to play with unknown children on the playground. Normally DS seemed paralyzed/overwhelmed by the activity of others at park and could not integrate with unknown children. He was suddenly and happily playing in the sand box with an unknown child. On another occasion he was playing tag with older children and actually engaged them in the game. There are a few other similar incidents that made me go.... hmmmm, my kid among the rages and OCD is doing better. We are in week 8 now, rages have improved to frequent mood liability, hard to say on the OCD, potty training still horrible and back to wearing pull ups. We have seen improvement in his ability to socially integrate, sensory issues, slight decrease in fist clenching, pacing and shoulder shrugging.
I had a long conversation with our Dr. this morning about OCD/rages being a herx response.... and he did confirm that these can increase and last a very long time. With herx's its is those unexpected improvements that tell you are on the right track. He also said if things were worse for up 4 to 6 months with no 'unexpected' improvements an antibiotic rotation should be considered. We did have the option of lightening the antibiotic load or pushing through with the knowledge some of these symptoms may hang in there for a while. Our choice was to continue on the Rifampin for another 8 weeks and to reevaluate at next appointment. You know as a parent 'I want' to fix the obvious 'TICS/OCD/Rages/Potty Training Issue'..... I appreciate the 'unexpected' improvements but I do understand now its a process and I am choosing to take the good with the bad. He felt the potty training regression was due to yeast. Our Dr. has a very different take on yeast as result of die-off and we are not doing anything to treat it at this moment.
I hope our story helps someone experiencing similar.
SFMom
I went to see my ds's lyme dr today at his Beverly hills office today. ( We are seeing him every 2weeks)
I told him that my ds is not doing too well with rifampin and it seemed that rifampin is undermining all our pandas treatment and putting us back to square one with OCD and rage sneaking back since starting rif but I also told him that I did not mind all that as long as we are heading to the right direction. Doc said that he rather we change my ds's med to Levaquin as he did not think rifampin is addressing my son's bartonella correctly.
We might be heading to generally to good direction but he thought that some other med (Leva) might do the same job with less herxing.
So I am going to switch my son's med as soon as I can fill up the prescription.
So far this is my note on rifampin.
All his physical herx symptoms were gone in first two weeks
Weeping and depression were gone by 3weeks.
OCD/rage came back in second week through now---not as frequent as before any treatment but considering they were completely gone for 3months prior to rifampin, I would say rifampin is the culprit.
If levaquin does not work, we will definitely go back to rifampin but for now Levaquin, here we come!!!!
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Thank you SFmom for posting this.
It could have been a story of my son past 9years.
I feel so lucky that we know what it is that we have to do but at the same time I am saddened that it wasn't sooner.
I feel sooooo guilty that I did not believe my son when he complained about his toe hurting, sole hurting, headaches, shin/leg hurting, fatigue and so on. My son's psychiatric told me that it was all in my son's head. ( of course, all specialty doctors told me nothing was physically wrong with my son as well) Many ADHD books I had read listed unknown somatic complain as one of ADHD symptoms. If I did not find my way into this forum, I don't know where my son would be today. Thank you again for all your support and help.
Sometimes I still cannot believe all this is happening to us. When my son was dxed with pandas and mycoplasmas P last year, I thought they were bad enough but lyme/bartonella is something so scary and sinister, it is just so unbelievable that he has all of these in him and I did not know of this for last 9years.
pathfinder
Oxytocin
in PANS / PANDAS (Lyme included)
Posted
very mild and trasitional.
head nodding, vocal sound( humming), blinking eyes.
I have not seen them in few months. ( since starting lyme treatment???)