PANDAS in Adults

[James_d]

This naturopath is treating me with antibiotics, rather than herbs. So she's more like a regular Dr actually, and that's what I was looking for.

Kakrpa, if you've only used 2 common antibiotics, then thats not enough!

There are potentially so many infective causes. Also it is recommended to use at least 2 antibiotics at the same time.

Combos such as augmentin and azithro, or clarythro, or doxy. Doxy is more for myco.

Then if Lyme or co-infection, then would try rifam, mino, tidemax... And more Etc.

Getting worse when on some antibiotics may be a good sign of herxing. You would want to look for herxing to improve eventually, otherwise perhaps it is just a side effect of the meds? Not sure. Perhaps you need to try a different combo. But just make sure to give each combo some time, as it may take a bit longer for adults to see improvements compared to kids.

[James_d]

Igenex is for Lyme and co infections. The problem I see however, is that if the results come back negative, they say you can't be sure the infection is not present. So you have to treat anyways if you have symptoms. Its only useful if the results are positive, that way you can target your treatment. But even still you can't be sure another infection is not lingering. Just my thoughts.

[kakrpa]

Good points James_d! I am not sure what ABX to try next, maybe doxycycline. Feels like such a guessing game.

 

As for igenex, IMHO, I would skip the testing as it sounds like you're paying a pretty penny only to be left with doubt. Unless they have a % reliable factor regarding their tests? How common are false positives? That would definitely weigh into the decision here...surely there are others here that can better speak to this test.

[James_d]

I agree, it is a guessing game. Its trial and error. If your able to see an llmd that seems like the best and only option. Need to see someone with experience. Otherwise it may not work, and just wasting money and time.

Doxy combined with something else would be recommended. As i have ocd, my ND seems to like combining things with augmentin, as augmentin appears to help ocd symptoms. But best to see what your Dr says.

My next step I think is going to be rifampin and mino combined starting from next week. But need to make sure my liver enzymes come back to normal first. Apperantly I had a rare reaction to one of the antibiotics.

[Wombat140]

Wombat, I notice that you only tried a small amount of limited antibiotics. Did you ever try Lyme/Bart/myco treatment?

Nah. The doctor I was seeing at that time only really knew about PANDAS, as far as I could tell, not things like Lyme disease or mycoplasma. Since then I've found somewhere called the British Society for Ecological Medicine, that I think MIGHT have doctors who might be aware of that kind of thing, but not sure (the website's a bit unclear) and I'm waiting to hear back from my GP after writing her a long letter about all this, and I don't want to contact the BSEM until I've heard back and know where SHE stands on the whole thing. Complicated.

 

I keep feeling that I'm just obsessed and should accept that it's not PANS and drop it, since none of those antibiotics had any effect, but I have to keep reminding myself that mycoplasma for one is known not to be affected by any of those three.

[dut]

Just a quick thought. Both of my kids have PANDAS and can ramp up in response to any immune triggers - bacteria, viruses and even a food allergy for my dd to nuts triggered her once. That was one of her worst and long lasting

 

Anyway.. with all the mention of antibiotics just wondered if any of you had tried acyclovir. With my kids it's all hit and miss but it has worked for a couple of flares for my son, when antibiotics didn't touch the sides.

 

 

[dut]

Oh and I also forgot, that our PANDAS savvy pediatrician also swabs gum/teeth line when they can't get over a flare, as she's found strep on the gumline when my kids have swabbed negative in the throat. She treats that with chlorhexadine (sp) the mouth wash for a couple of weeks not antibiotics and again for my son that has gotten him out of at least one flare.

[James_d]

Thanks dut, the idea of antivirals has certainly crossed my mind. At this stage, all my blood tests, including strep have been negative.
The problem in adults seems to be that since the infections have been present for so long, the body appears to stop producing antibodies. So bloods tests often come back negative, making it hard to target treatment.

I will discuss that with my Naturopath at next visit.

Wombat, if your not able to find a local doctor who treats this, you may want to contact the lyme association for doctors, or even put up your location on this forum, and hopefully someone could suggest some options for you. But definately dont give up after trialing so few options. There is some hope out there still!

[James_d]

I'm needing some help here. If I could ask for some guidance regarding antibiotics from someone more experienced.

So my NP doctor is recommending I now try a combination of rifampin and ceftin.

All previous antibiotics tried only had an initial herx, but no significant improvements in ocd symptoms. And all my blood tests from regular pathology did not show any infections. So were experimenting now with different antibiotics to see if they cause any changes.

Anyone with any experience able to offer any help? Are these reasonable antibiotics? Should I consider experimenting with other antibiotics first that would be more likely to be helpful?

I've tried previously augmentin, azithro, clarithro, and doxy. You can read my info in my signature.

I would really appreciate some guidance before starting the new antibiotics.

[Alex]

Hi,

There is a psychiatrist who treats adult PANDAS who posts on the Psychology Today website. He has a few articles on the subject. I'll post links below. Very interesting and heart wrenching comments from PANDAS suffererers and parents as well. He also submitted a journal article on adult PANDAS. Link to that below too.

Good luck!

Alex

 

https://www.psychologytoday.com/blog/attention-please/201107/evil-pandas-part-ii-adult-affliction-treatment

 

https://www.psychologytoday.com/blog/attention-please/201203/pandas-patients-parents-and-physicians

 

https://www.psychologytoday.com/blog/attention-please/201501/adult-pandas-seek-and-ye-shall-find

 

https://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain

 

https://www.psychologytoday.com/blog/attention-please/201203/pandas-patients-parents-and-physicians

[kakrpa]

I'm needing some help here. If I could ask for some guidance regarding antibiotics from someone more experienced.

So my NP doctor is recommending I now try a combination of rifampin and ceftin.

All previous antibiotics tried only had an initial herx, but no significant improvements in ocd symptoms. And all my blood tests from regular pathology did not show any infections. So were experimenting now with different antibiotics to see if they cause any changes.

Anyone with any experience able to offer any help? Are these reasonable antibiotics? Should I consider experimenting with other antibiotics first that would be more likely to be helpful?

I've tried previously augmentin, azithro, clarithro, and doxy. You can read my info in my signature.

I would really appreciate some guidance before starting the new antibiotics.

 

James_d how are you doing? What abx did you end up taking and/or are you still taking them? Curious to hear how they're working for you.

 

I'm wanting to try minocycline next - if you google minocycline and OCD there's some very recent research that suggests its potential role not only as an abx but also as a glutamate modulator!

 

Keep us posted!

[James_d]

Well my liver is taking longer then expected to return to normal. So I haven't started the antibiotics yet. I'm retesting this week, and hopefully start antibiotics soon. I've been told to start cefuroxime (ceftin) first and check liver again after 2 weeks then add on rifampin.

I've been off all antibiotics for over a month now, and I felt briefly worse, but now feeling slightly better. Its possible the antibiotics may have killed something off.

[James_d]

Its taken a while for my liver to finally improve. Not completely back to normal, but nearly there.

My research in the last few months have made me believe that I may be suffering from bartonella. I have been on antibiotics more tailored towards Lyme disease. Interestingly, I did have some changes in OCD symptoms in that time, and the antibiotics may have suppressed the bartonella to some extent. Since stopping the antibiotics in February, I have developed increased muscle aches and twitches, headaches, and foot sole pains. These seem to be consistent with bart.

According to what I have read, taking antibiotics may bring bart symptoms out. As the antibiotics I have taken were not specific to getting rid of bartonella completely, it may have only suppressed them for a short while.

Based on my reading, Dr M specifically recommends clarithromycin and rifampin together, and may later change these if needed.

Also, Dr M mentions that he sees liver enzymes become mildly elevated with antibiotics and that continuing antibiotics may eventually lead to the liver enzymes settling. However, I would be very cautious about this, as permanent liver damage and death have occurred from some of these antibiotics! So definitely need to be under the care of a doctor if using these meds. I only mention this because my liver enzymes were mildly elevated on antibiotics, and so I stopped. But I wonder if this is just another sign of bartonella. Either way, I was too fearful to continue antibiotics with my liver enzyme derangement, and I feel it was the best and safest decision to stop.

All this research makes me think that each person with OCD may have a different infection or cause. There is only likely to be a handful of causes in my opinion, but each would require a specific treatment. For example, for one person it may be lyme, for another bartonella, and for someone else it may be strep. If you just use a specific set of antibiotics, you may not be targeting the right one. In my case I feel I have really targeted strep, and mercury toxicity, but I have not really covered lyme or bart very well. So hopefully, I may see some more improvements with bartonella specific treatments.

If anyone is interested in hearing Dr M, I found this useful youtube video. He is the speaker in the second half.

[James_d]

I ended up having testing done with Australian Biologics for lyme and mycoplasma PCR, and also have sent blood to Galaxy Diagnostics for Bart and co-infections. I thought it would be a good idea to have some testing done so that I would at least know what to target with the antibiotics. Im waiting now for the results, but in the meantime thought I would start slow with clarithromycin, and plan to start rifampin in 2 weeks. I am suspecting Bart, so focusing treatment on that mostly for now.

[James_d]

I thought I'd post an update to help those who may be going through something similar, and to ask for some advice.

After sending my bloods for testing, I was unfortunate that galaxy did not receive the blood in time, and it was not tested. So my bloods were sent to Australian Rickettsial lab, and came up mild positive for Bart, and strongly positive for nearly all the different Rickettsias. Lyme and bab were negative.

In the last 6 months I have been treated with herbs, rather than Antibiotics, as my new LLMD says that her experience favours herbs. I was initially on beyond balance BB-2, bab-2, and bar-1 then bar-2. I had mild herx for the first 1-2 weeks, but that quickly settled. I did not notice any improvement over a few months, so she switched me over to the byron white range. While these do taste stronger, I did not not have any change in symptoms in the last 2 months. I am also doing the PK protocol for the last few months, and that has not done much either.

So pretty much at this point, I am at my usual baseline. My main symptoms are pure-O OCD, mild/moderate cognitive dysfunction and poor memory, mild headaches, some insomnia, mild occasional knee pains.

Next step from here: Im going to start the Buhner Herbs next, targeting the 3 B's. Ill be taking Sida acuta, Houttuynia, Knotweed, andrographis, otoba bark. From what I read, these seem to show good promise in treating these infections, and are stronger that the herbs I have tried so far. I have found a brand "samsara herbs" that combines most of these herbs into a lyme cocktail, and its much more affordable. Anyone have any experience with these?

I am not sure why after all these treatment I havent seen a huge difference in symptoms? I feel that maybe the treatments Ive tried just didnt really hit the infections very well, thus no change in symptoms. But Im slightly concerned that maybe this could be permanent damage. Any ideas on this?