Jump to content
ACN Latitudes Forums
  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

Recommended Posts

I am very new at all of this so please bear with me. After years of trying to figure out what was going on with my daughter, she recently tested positive for mycoplasm, bartonella, HHV6, and some bands of lyme(though inconclusive). Mycoplasm showed current activation and past (IgG and IgM). Our current struggles started in December with a severe bout of Influenza B that dragged on and on resulting in severe depression, rage, mild ocd, intrusive thoughts, and ultimately she stopped eating. Completely. Hospital stay was pretty useless and nobody would even remotely consider PANS/PANDAS (I begged). Local doc listened and ordered panels. Bingo...looks like mycoplasma is a BIG trigger for her. We started her on azithromycin but my daughter got so much worse on azithromycin that we had to stop after a couple of days (She tested resistant to amoxicillin). 12 days ago, she started doxycycline (100mg am and 100mg pm) to see if she tolerated it better. The first 4 days were an absolute nightmare with all the worst behaviors surfacing. Just when I was about to stop the doxycycline, everything changed.....my daughter came back. More like the new and improved version. She is the best we have seen her in, well, I can't even remember seeing her like this. Even she says that she feels different and she feels happy. I am trying to remain positive and enjoy this turnaround but I find myself waiting for the other shoe to drop. Is it possible that the doxycycline has hit the mycoplasma? I know it's not the first choice for treatment, but there is no other explanation that we know of and it seems to be helping. I still want to get her into a PANS specialist. This will take a long time and I don't know how long she should stay on the doxycycline. Has anyone gone this route before?

Thank you all so much!

QueenMother

Share this post


Link to post
Share on other sites

Glad your getting relief, enjoy the improvments!

Biaxan ( usually used for Mycoplasma ?)

You need to make sure she is moving her Bowels 2-3 times a day, Extra Vit C, Magnesium, High dose Probiotics

Re check lab results once a month on the mycoplasma - sometimes it can take 2-4 months to clear up.

 

Lyme and PANDAS ~ seem to be both connected, treating one thing at a time. The OCD, you may want to use some supportive

supplements, like IP6 Inositol , there are others that help too, a little 5 HTP - daily to help with moods, Pro EFA's, etc..

Share this post


Link to post
Share on other sites

Glad your getting relief, enjoy the improvments!

Biaxan ( usually used for Mycoplasma ?)

You need to make sure she is moving her Bowels 2-3 times a day, Extra Vit C, Magnesium, High dose Probiotics

Re check lab results once a month on the mycoplasma - sometimes it can take 2-4 months to clear up.

 

Lyme and PANDAS ~ seem to be both connected, treating one thing at a time. The OCD, you may want to use some supportive

supplements, like IP6 Inositol , there are others that help too, a little 5 HTP - daily to help with moods, Pro EFA's, etc..

2 - 4 months? Mine has already been 2 years.

Share this post


Link to post
Share on other sites

horrible change when abx are first given could be herxing. you may want to read more about it.

i want also to reinforce what allie suggested -- pandas is a battle on many fronts not just infection. you need to figure out what else your daughter needs - in our case, it was food intolerance, methylation pathways, and possibly leaky gut. Until we started dealing with all of them, we did not see considerable improvement though we did see the kind of change you describe, finding out a person in your child you did not know was there due to Pans.

Share this post


Link to post
Share on other sites

I agree with pr40. The down-turn with azithromycin could have been a die-off reaction. You may have seen a turn around after several days if her system had been given a chance to detox. Many of our children have methylation blockages that decrease the body's ability to do just this, resulting in an ongoing buildup of toxic metabolites resulting from bacterial/viral/fungal die-off.

 

With each change in abx protocol we have seen herxheimer reactions which consist of increased symptoms. Research detox protocols, they are important.

Share this post


Link to post
Share on other sites

I am so glad to hear that you are seeing improvements. You are correct that most likely the doxy is working on the myco. I am concerned about the "inconclusive" lyme bands. What were her lyme results? Have you done research on the ILADS websites? Lyme tests can be very tricky. An indeterminate band is often considered a positive band by most LLMD's, where as it is considered negative by the CDC. Also, ILADS only requires one positive species specific band to be considered positive. My daughters test was considered negative by CDC but highly positive by ILADS guidelines. I would suggest you see a LLMD. At the least you are dealing with mycoplasma and bartonella. Both of these are highly associated with lyme. The best person to treat myco and especially bartonella is a LLMD. It's wonderful that your daughter is doing better now. I hope that you are able to enjoy this time. However, bartonella (and mycoplasma) are very difficult to treat and requires an expert in that field.

 

We have the lyme, myco, bartonella trifecta and are 2 years into treatment. There have been really good months and really bad months, but we are far from cured. Unfortunately, we only started the lyme / bartonella treatment one year ago. I just wish we had started sooner. So, that is my recommendation (for what it's worth). Hopefully you can find a good physician to help. In the meantime, enjoy this peace with your daughter.

 

Dedee

Share this post


Link to post
Share on other sites

Doxy great for mycoP, probbaly the best antibiotic for it is you can tolerate it. Keep an eye on sun sensitivity. Most people become highly sun sensitive - where even a couple minutes in the the sun, even with sunscreen, will cause a tingling sensation and burning. I have taken my DS off it in the summer because he is fair, and plays baseball.

 

. Keep up the probiotics! Researcher Garth Nicohlson says mycoP takes a minimum of 9 months to treat chronic mycoplasma, with high does Doxy (or Doryx - which is easier on the gut). His treatment looks like this -3 months on, and then 2 weeks off, then alternate 2 weeks off and 6 weeks on for remainder of the 9months.

 

Good news is that the doxy works on some aspects of lyme as well.

 

good luck. I hope you are onto something.

Share this post


Link to post
Share on other sites

Thank you so much! Well, as I mentioned waiting for the other shoe to drop....today that glass slipper is dangling from her big toe. Hard to tell if it is just normal teen angst and her being a little s**t, or herx, or PMS, or myco, or lyme, or mental...or all of the above. (And for those of you who did not fill in the letters *n*o, shame on you! :-))

In my attempt to be brief, I did not give all of our history. Rowing mom, we have been working on the methylation issues with the Yasko protocol for the past 2 years or so. We have contributing genetics (BHMT1+- and MTHFR+-, in particular) and have been doing pretty good on the program until Dd had flu in December. We have battled (and beaten) h. pylori, ringworm, hookworm, eczema, psoriasis, lichens plantaris, h. blastocystis, mycoplasma pneumonia, hives, benign cyst removal, staph infection....all in the past 3 years. We keep knocking things out one at a time. I was totally ignorant of Bartonella when the horrible purple striations came and thought it was just an extreme reaction to a growth spurt. She is very fair-skinned and I had her applying cocoa butter to the striations. I had no idea that Bartonella even existed. Interesting to note that when acne flared, her dermatologist put her on doxy and the purple striations went away. We still did not make a Bartonella connection. We had our best stretch of 'good' on the doxy for her acne. Then we had another bad spell of everything. Our local alternative PA ordered ELISA and she showed intolerant of gluten but not celiac. After a year of total gluten-free, her tests came back normal and she was allowed to resume wheat. (In all fairness, we would have continued GF but were going to Italy and were hoping she could enjoy the pastries and pasta..which she did after being off everything for a year) At the same time, we were building up the Yasko protocol and she was doing really well. As we fought each battle, we saw improvements. Right up until the flu in December...then she tanked....big time. We fianlly had no choice but to hospitalize. After 2 weeks in a major university hospital, my daughter was only slightly (very slightly) improved due to a low-dose SSRI and I was made to feel like a lunatic Munchaussen mom with no parenting skills. I kept insisting that there was a pattern to her behaviour but, not being a doctor and having never played one on TV, I couldn't fit the pieces together. After being released, I took her to a local alternative PA who actually listened and respected my observations as a mother. We began testing and our PA is convinced it is PANS. I am beyond convinced that it is PANS. so, yes, we are working the methylation and struggling to fit the pieces of the puzzle together. I am worried about keeping her on doxy long-term because of the dental discoloration aspect (just got the braces off a year ago) and summer is upon us and her entire social life revolves around the beach.And as much as we love her, our PA is not as experienced as some of the pros so I need someone with more experience. Our PA is great to have and would work well with a specialist. I have finally convinced duh hubby that this is not some Hail Mary desperation diagnosis and that he needs to get on board. I live in coastal NC and have been informed by ILAD that there are no good LLD near me. All of this started 3-4 years ago when we moved here and I am totally missing Los Angeles right now. Can someone tell me the closest PANS specialist? Or the best? I am leaning toward Dr. Boubollis. He is not the closest to us but I like what I read. Right now, availability will trump all. We just need to get her through the last week of May when school ends and I will take her anywhere for help.

Thanks for your input and I appreciate all doctor and treatment advice you can give.

QueenMother

Share this post


Link to post
Share on other sites

DeDee,

I was so long on my previous post that I forgot to respond to your mention of the lyme bands. #41 and #45 were both positive. #31 and #35 were both indeterminate. The overall results were negative. What does this mean?

Thanks so much!

QueenMother

Share this post


Link to post
Share on other sites

Well an LLMD will call an indeterminate band positive. Indeterminate just means they saw a line but it wasn't very dark. Our LLMD says it's sort of like a pregnancy test. You can't be a little pregnant. If the band shows any color it's positive. So then you look at which bands are specific to the lyme bacteria. Some bands are seen in other organisms and some bands specific to only lyme. LLMD's put more weight on the specific bands. In your case band 31 is a lyme specific band so that is pretty telling. 41 and 45 are not species specific but the fact that they are both positive gives more weight to the over all validity of your positive results. So these results are very suspecious. Of course lyme is a clinical diagnosis so the LLMD would look at the results along with the symptoms and then make a diagnosis. Dr B is a great doctor but he isn't a LLMD. You need a true LLMD. We see one near Indianapolis. There are several good doctors if you ask around on this forum. Looking at your results and reading your history, I think you need a very experienced LLMD. JMHO.

 

Dedee

Edited by Dedee

Share this post


Link to post
Share on other sites

Just to add to what Deede posted, 31 takes at least a year to show up. So that would indicate chronic Lyme. Dedee I just posted a long post on the WB, I would love if you would add about the pregnancy test example in regards to IND. It is so misleading for people

Share this post


Link to post
Share on other sites

Ps I really love Dr B for many reasons, he is an immunologist and thus really understands the immunological processes and a variety of disease, I find him to be an invaluable source of information on antibiotics, and for us he has been so compassionate and helpful for both my kids, The wait is horrendous though, I would say to make an appt so you have it and try to get into someone else who can help in the meantime.

Share this post


Link to post
Share on other sites

Latimer in Bethesda? (or somewhere near there). I've seen her present. She is an immunologist(wait..maybe she is a neurologist, cant remember now) - and been treating pandas for many, many years.

 

Also - on lyme - I do think there are fairly high rate of false negative, and maybe because they test your antibodies - and if you will have the antibodies, even after the Lyme is gone.

 

I've seen a number of people post on the theory that the sickest people don't show any bands - because their immune system isn't actively fighiting it, it isn't until they are in, or done, with treatment that their testing becomes positive. Its a theory.

 

the Lyme tests all seem to stink, and you can't put too much faith in them IMO.

Share this post


Link to post
Share on other sites

Bartonella is one of the more common lyme coinfections. If you are having bartonella symptoms and also IND lyme specific bands, I would try to find a LLMD. Our LLMD insists that bartonella is causing DD11's PANS/tourettes symptoms.

Share this post


Link to post
Share on other sites

I am researching docs now so I really appreciate your input. I was interested in Dr. Latimer because, well, I guess she is closest, and I hear her name a lot. I read her site, however, and some of the comments were not complimentary. Some were downright scary. Since many of you have experience with the good ones here on the East Coast, please share your expertise. Have checked pandasnetwork and ILAD but don't know which way to go. Dr. B sounds promising but not LLD and looong wait. Hard enough to find a good PANDAS doc but it narrows the field even more to add in Lyme. Oy....my brain hurts.

Thanks, again.

QueenMother

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...