9 ms·

A bone-marrow transplant treated a patient’s leukemia – and his schizophrenia

131 points by sajid 8y ago

Jugglerofworlds 8y ago
I've long suspected that my depression & OCD were caused by some immune response. It all started very suddenly when I had a very bad illness. Unfortunately I have yet to find a doctor that believes me and is willing to do anything other than giving me the standard medications.
- denerio-a 8y ago
  If you haven’t tried the Wim Hof method, please give it a go. It might not work for you as well as it has for others, but it won’t cost you anything to try it.
  - thevagrant 8y ago
    I found it quite helpful if practiced regularly.
  - ssijak 8y ago
    To heal depression or OCD or both?
    - denerio-a 8y ago
      Personally I believe it’s helpful for both. I don’t know what the mechanism is, but it has been effective for me. It feels something like distilled meditation (vipassana) ...
- Nasrudith 8y ago
  Technically mental trauma could have done so as well - which you probably heard dozens of times. Even if a doctor believed you I am not sure what they could do that wouldn't be extremely ill advised. Immunosuppressants would be tough to justify even if it was a certain cure instead of a highly tentative one. I know it is a frustrating situation to be in. Like I know that oral general anesthesia would help me for bloodwork given a severe phobia (multiple panic attacks while maxed oral dose and too tranqed to walk normally bad) but even without asthma and weight the risk would be too off-kilter to do without qualifying as malpractice. Let alone insurance and expenses. Unfortunately the field seems to select for people who see it as a nonissue.
  - Jugglerofworlds 8y ago
    Yes, there are likely multiple factors here, both physical and learned behaviors. I've had some access to cutting edge treatments since I live in Boston, which is probably the #1 place in the world for psychiatry research. Over the years I've cobbled together a regimen that sort of works, but it's basically a band-aid solution and I can tell that it's not 100% effective. Nowadays I feel normal ish about 15% of the time, meh about 50%, and somewhat depressed 35%. I've tried multiple medications from pretty much every category of medications, including many off-label treatments.
- WalterSear 8y ago
  I treat my treatment resistant depression by inducing 101+ fever for half an hour each day. I started when I had to stop an allergy to the EMSAM patch. There are also medications that you might not have heard of. If you want, I can write more when I'm not on mobile.
  - solveit 8y ago
    How do you induce a fever?
    - Something1234 8y ago
      I'm guessing he uses a sauna.
      - WalterSear 8y ago
        Pretty much. I use IR lights and a pair of space heaters in an enclosed space. The IR lights do most of the job. Going to a sauna with a thermometer would probably be the easiest route for many who want to try this. It was easier for me to buy a bunch of lights on amazon and do it at home. Cheaper, too.
    - DoreenMichele 8y ago
      You can easily induce a 102 degree fever with a very hot bath.
      - WalterSear 8y ago
        Not for half an hour, unless you have someone patient with a kettle. I have seen one journal abstract where that that was used, but I don't know the details. There are better methods though, if you have the budget of a hospital or research center, such as IR lights filtered through water. There's also a article outlining various methods of inducing hyperthermia.
        DoreenMichele 8y ago
- loceng 8y ago
  Have a way to contact you directly?
  - Jugglerofworlds 8y ago
    Sure, you can email me at jugglerofworlds123@gmail.com
- Arete31415 8y ago
  Another one person data point: I've had OCD since childhood, and even when I was a kid I noticed that sometimes my symptoms would flare up for a few days, right before I came down with the flu. As an adult, I contracted Lyme Disease, and one lingering symptom was that my OCD got a lot worse. After 1 month of IV antibiotics (rocephin), my OCD went from a "10" down to maybe a 7 in severity.
- baccheion 8y ago
  There is an autoimmune theory of schizophrenia. Excess histamine can also cause OCD-like symptoms. Look into megadose vitamin D3 (+ K2 MK-4 + magnesium). Memantine + selank. Lowering inflammation.
  - Jugglerofworlds 8y ago
    I tried prescription memantine, both the generic and XR formulations. The brain fog startup side effect never went away for me, so I had to quit. I've never found a supplement that has actually done anything.
    - baccheion 8y ago
      Did you taper 2.5 mg at a time every 3-4 days until taking 5-10 mg? Also add selank. Have you ever tried chelated/TRAACS magnesium? What else have you tried? Do you have any nutrient deficiencies? Ever looked into nutrient tests like NutrEval? A comprehensive hormone panel? Thyroid panel? Genetic testing?
      - com2kid 8y ago
        I also tried Memantine, my verbal fluency took a serious nose dive, I was unable to follow simple instructions. I slowly tapered up, much slower than 2.5 mg at a time. It helped in some other areas, but not being able to do simple tasks nixed it for me.
  - perl4ever 8y ago
    I don't know enough to evaluate this advice, but the word "histamine" caught my eye. There are antidepressants that, as I understand it, are antihistamines. For example, imipramine. I wonder what it means if you have an adverse reaction to such a drug, and something resembling schizophrenia as well.
- raincom 8y ago
  You need to find a doctor like late Oliver Sacks and Ramachandran. Basically, a research oriented doctor.
- erentz 8y ago
  There’s an illness called PANDAS in children that is very much like that, a key symptom is the OCD. The Cunningham panel test is used for diagnosis and can also be used by adults although there are no established diagnosis from this in adults. The test costs about $900. Treatment in children requires a smart doctor who is aware of the illness and who will get IVIG and/or plasmapheresis for the child. Both are incredibly expensive treatments. There are also a number of very expensive autoimmune panels from Quest and Mayo Clinic for neurological stuff which can be worth running through, but only do these if your insurance will cover them, they’re up to 10k each, and the results aren’t necessarily going to help you in any way. Diseases such as Lyme and mononucleosis are also known to cause a number of different autoimmune problems. Unfortunately doctors aren’t very good at recognizing this and it can take a long stressful odyssey to get properly diagnoses. For some types of autoimmune illness there are some options such as Low Dose Naltrexone which work well for some people, but not others. In cases like Lyme, properly treating the illness and clearing the Lyme can eventually lead to the autoimmunity going away also. (Note: in your case LDN has a big warning that in some people it can cause depression, I tried LDN and the depression it triggered was no joke, but it came on fairly shortly after starting and passed after stopping thankfully, and when I tried it again the same happened so it was clear what was happening. I just say this so if you do try it you are very aware and monitor yourself.)
  - Jugglerofworlds 8y ago
    Actually I already take naltrexone, but in ultra low doses. I'm combining it with low dose buprenorphine, which is basically the only medication that has done anything for my depression. I will see if I can get an appointment with a specialist about PANDAs. I have known about PANDAs for a while, but it was dismissed very early since I'm an adult. Now that I've failed pretty much every treatment it might be worth it to take a second look.
- thevagrant 8y ago
  Curious. Was it Epstein Barr virus? I never felt quite right since my mid 20's. Mononucleosis (glandular fever) and then a couple incidents of really bad food poisoning. On occasion, when I get the flu my cognition temporarily gets better.
- DoreenMichele 8y ago
  I used to participate in an alternative medicine community. Their explanation would be your illness "settled in the brain" and has never been fully cleared.
Nasrudith 8y ago
Reminds me of the surprising cause of narcolepsy - not anything sleep cycle related, energetic as one might expect but auto-immune causing the body to periodically attack its own wakefulness hormones producers. Unfortunately all of our immune system tools are very coarse even when doing something groundbreaking as cancer immunotherapy which is basically farming ones we know attack the cancer and reinserting them - very labor intensive for something individualized with highly educated workers. It almost makes one wish for reverse vaccination to specify things as harmless - until you realize how horribly exploitable it would be by nature - let alone anybody twisted enough to use it for biological weaponry.
karmakaze 8y ago
Thoughtbytes: > a growing body of literature suggesting that the immune system is involved in psychiatric disorders from depression to bipolar disorder > Austrian physician Julius Wagner-Jauregg developed a method of deliberate infection of psychiatric patients with malaria to induce fever. Some of his patients died from the treatment, but many others recovered. He won a Nobel Prize in 1927.
- loceng 8y ago
  I don't have the links to the studies, however function in some set of autistic children would have temporary improved capabilities when a fever was induced in them. Quick Google search has some results including https://iancommunity.org/ssc/fever-effect-curious-phenomenon-autism https://iancommunity.org/ssc/fever-effect-curious-phenomenon...
- stenl 8y ago
  Julius Wagner-Jauregg specifically treated neurosyphilis, an infectious disease, not just any ”psychiatric” disorder. That makes it perhaps less surprising that activating the immune system should have an effect. Today neurosyphilis is treated with antibiotics.
torpfactory 8y ago
Just a friendly reminder not to get medical advice from anonymous strangers on the internet. There are some pretty serious interventions described in the comments below as things you could try at home.
- olliej 8y ago
  Also don’t use webmd :) See an actual clinician
- DoreenMichele 8y ago
  Just a friendly reminder to also not confuse conversation on the topic with a recommendation that "You should do X!" Some of us are just talking and that's it.
DoreenMichele 8y ago
When penicillin was first used to treat syphilis, thousands of cured schizophrenics were released from mental asylums. https://www.newsweek.com/diseases-mind-133263 https://www.newsweek.com/diseases-mind-133263 I've apparently submitted this article three times, the last time 18 days ago. It's never gotten traction. I have a long history of viewing mood issues and the like as somatopsychic side effects of medical issues. I tend to ask my sciency son to "Look up X" when I'm having an issue. I'm talented at asking the right questions. He's talented at getting back to me within an hour with the info I need, plus supporting links. Then I typically go eat a thing and stop being such a fruitcake. Some things I've done: Consumed foods containing rosemary or sage to calm extreme anxiety because I was clear it was brought on by withdrawal. Consumed beef with potatoes to mediate the salt-lithium connection and prevent both woke bi-polar like mood swings and suicidal tendencies. Consumed oranges for the vitamin c to put a stop to out of the blue rage. See also: https://news.ycombinator.com/item?id=16607422#16608139 https://news.ycombinator.com/item?id=16607422#16608139 https://news.ycombinator.com/item?id=16140867 https://news.ycombinator.com/item?id=16140867
- stef25 8y ago
  > When penicillin was first used to treat syphilis, thousands of cured schizophrenics were released from mental asylums Syphilis itself produces psychosis and those "schizophrenics" were most likely never schizophrenics in the first place (shame on you Newsweek) https://www.ncbi.nlm.nih.gov/pubmed/11186166 https://www.ncbi.nlm.nih.gov/pubmed/11186166 https://www.ncbi.nlm.nih.gov/pubmed/1521109 https://www.ncbi.nlm.nih.gov/pubmed/1521109 If those diet based treatments work for you then that's great but, respectfully, I think everyone should take those statements with a serious pinch of salt (no pun intended) Edited 2x for brevity, grammar
  - deleted 8y ago
    [deleted]
  - perl4ever 8y ago
    Anecdotally, I've heard of and seen nursing home patients and other elderly people that have seriously altered mental states, with anger and/or disorientation, that recover immediately with antibiotics, where the medical people describe the infection as a UTI. And also in my experience, even once it's repeated a couple times, they can be obtuse about inferring the mental changes are a sign that they should treat with antibiotics. I've also seen a cancer patient on chemo with symptoms that resemble some forms of psychosis, and of course that is someone who is immuno-compromised and susceptible to opportunistic infections. So I think that probably syphilis is only one example of an infection that leads to an altered mental state, and there's no reason to assume that because something is treatable with penicillin, that is is necessarily syphilis.
acrossthepond10 8y ago
Is anyone else interested in crowdfunding a scientific study to explore this link? This is not my area of expertise but as someone affected by this I would like to contribute to finding some answers even if it is at the home lab level.
perl4ever 8y ago
Something I ran across in a newsletter about medical research recently was that a doctor examining patients with treatment-resistant depression determined that there were (treatable) metabolic abnormalities apparent in cerebrospinal fluid. Normally, blood tests are all that is done to rule out such things, but that may not show the problem.

131 points by sajid 8y ago

I've long suspected that my depression & OCD were caused by some immune response. It all started very suddenly when I had a very bad illness. Unfortunately I have yet to find a doctor that believes me and is willing to do anything other than giving me the standard medications.

denerio-a 8y ago
If you haven’t tried the Wim Hof method, please give it a go. It might not work for you as well as it has for others, but it won’t cost you anything to try it.
- thevagrant 8y ago
  I found it quite helpful if practiced regularly.
- ssijak 8y ago
  To heal depression or OCD or both?
  - denerio-a 8y ago
    Personally I believe it’s helpful for both. I don’t know what the mechanism is, but it has been effective for me. It feels something like distilled meditation (vipassana) ...
Nasrudith 8y ago
Technically mental trauma could have done so as well - which you probably heard dozens of times. Even if a doctor believed you I am not sure what they could do that wouldn't be extremely ill advised. Immunosuppressants would be tough to justify even if it was a certain cure instead of a highly tentative one. I know it is a frustrating situation to be in. Like I know that oral general anesthesia would help me for bloodwork given a severe phobia (multiple panic attacks while maxed oral dose and too tranqed to walk normally bad) but even without asthma and weight the risk would be too off-kilter to do without qualifying as malpractice. Let alone insurance and expenses. Unfortunately the field seems to select for people who see it as a nonissue.
- Jugglerofworlds 8y ago
  Yes, there are likely multiple factors here, both physical and learned behaviors. I've had some access to cutting edge treatments since I live in Boston, which is probably the #1 place in the world for psychiatry research. Over the years I've cobbled together a regimen that sort of works, but it's basically a band-aid solution and I can tell that it's not 100% effective. Nowadays I feel normal ish about 15% of the time, meh about 50%, and somewhat depressed 35%. I've tried multiple medications from pretty much every category of medications, including many off-label treatments.
WalterSear 8y ago
I treat my treatment resistant depression by inducing 101+ fever for half an hour each day. I started when I had to stop an allergy to the EMSAM patch. There are also medications that you might not have heard of. If you want, I can write more when I'm not on mobile.
- solveit 8y ago
  How do you induce a fever?
  - Something1234 8y ago
    I'm guessing he uses a sauna.
    - WalterSear 8y ago
      Pretty much. I use IR lights and a pair of space heaters in an enclosed space. The IR lights do most of the job. Going to a sauna with a thermometer would probably be the easiest route for many who want to try this. It was easier for me to buy a bunch of lights on amazon and do it at home. Cheaper, too.
  - DoreenMichele 8y ago
    You can easily induce a 102 degree fever with a very hot bath.
    - WalterSear 8y ago
      Not for half an hour, unless you have someone patient with a kettle. I have seen one journal abstract where that that was used, but I don't know the details. There are better methods though, if you have the budget of a hospital or research center, such as IR lights filtered through water. There's also a article outlining various methods of inducing hyperthermia.
      - DoreenMichele 8y ago
loceng 8y ago
Have a way to contact you directly?
- Jugglerofworlds 8y ago
  Sure, you can email me at jugglerofworlds123@gmail.com
Arete31415 8y ago
Another one person data point: I've had OCD since childhood, and even when I was a kid I noticed that sometimes my symptoms would flare up for a few days, right before I came down with the flu. As an adult, I contracted Lyme Disease, and one lingering symptom was that my OCD got a lot worse. After 1 month of IV antibiotics (rocephin), my OCD went from a "10" down to maybe a 7 in severity.
baccheion 8y ago
There is an autoimmune theory of schizophrenia. Excess histamine can also cause OCD-like symptoms. Look into megadose vitamin D3 (+ K2 MK-4 + magnesium). Memantine + selank. Lowering inflammation.
- Jugglerofworlds 8y ago
  I tried prescription memantine, both the generic and XR formulations. The brain fog startup side effect never went away for me, so I had to quit. I've never found a supplement that has actually done anything.
  - baccheion 8y ago
    Did you taper 2.5 mg at a time every 3-4 days until taking 5-10 mg? Also add selank. Have you ever tried chelated/TRAACS magnesium? What else have you tried? Do you have any nutrient deficiencies? Ever looked into nutrient tests like NutrEval? A comprehensive hormone panel? Thyroid panel? Genetic testing?
    - com2kid 8y ago
      I also tried Memantine, my verbal fluency took a serious nose dive, I was unable to follow simple instructions. I slowly tapered up, much slower than 2.5 mg at a time. It helped in some other areas, but not being able to do simple tasks nixed it for me.
- perl4ever 8y ago
  I don't know enough to evaluate this advice, but the word "histamine" caught my eye. There are antidepressants that, as I understand it, are antihistamines. For example, imipramine. I wonder what it means if you have an adverse reaction to such a drug, and something resembling schizophrenia as well.
raincom 8y ago
You need to find a doctor like late Oliver Sacks and Ramachandran. Basically, a research oriented doctor.
erentz 8y ago
There’s an illness called PANDAS in children that is very much like that, a key symptom is the OCD. The Cunningham panel test is used for diagnosis and can also be used by adults although there are no established diagnosis from this in adults. The test costs about $900. Treatment in children requires a smart doctor who is aware of the illness and who will get IVIG and/or plasmapheresis for the child. Both are incredibly expensive treatments. There are also a number of very expensive autoimmune panels from Quest and Mayo Clinic for neurological stuff which can be worth running through, but only do these if your insurance will cover them, they’re up to 10k each, and the results aren’t necessarily going to help you in any way. Diseases such as Lyme and mononucleosis are also known to cause a number of different autoimmune problems. Unfortunately doctors aren’t very good at recognizing this and it can take a long stressful odyssey to get properly diagnoses. For some types of autoimmune illness there are some options such as Low Dose Naltrexone which work well for some people, but not others. In cases like Lyme, properly treating the illness and clearing the Lyme can eventually lead to the autoimmunity going away also. (Note: in your case LDN has a big warning that in some people it can cause depression, I tried LDN and the depression it triggered was no joke, but it came on fairly shortly after starting and passed after stopping thankfully, and when I tried it again the same happened so it was clear what was happening. I just say this so if you do try it you are very aware and monitor yourself.)
- Jugglerofworlds 8y ago
  Actually I already take naltrexone, but in ultra low doses. I'm combining it with low dose buprenorphine, which is basically the only medication that has done anything for my depression. I will see if I can get an appointment with a specialist about PANDAs. I have known about PANDAs for a while, but it was dismissed very early since I'm an adult. Now that I've failed pretty much every treatment it might be worth it to take a second look.
thevagrant 8y ago
Curious. Was it Epstein Barr virus? I never felt quite right since my mid 20's. Mononucleosis (glandular fever) and then a couple incidents of really bad food poisoning. On occasion, when I get the flu my cognition temporarily gets better.
DoreenMichele 8y ago
I used to participate in an alternative medicine community. Their explanation would be your illness "settled in the brain" and has never been fully cleared.

Nasrudith 8y ago

Reminds me of the surprising cause of narcolepsy - not anything sleep cycle related, energetic as one might expect but auto-immune causing the body to periodically attack its own wakefulness hormones producers. Unfortunately all of our immune system tools are very coarse even when doing something groundbreaking as cancer immunotherapy which is basically farming ones we know attack the cancer and reinserting them - very labor intensive for something individualized with highly educated workers. It almost makes one wish for reverse vaccination to specify things as harmless - until you realize how horribly exploitable it would be by nature - let alone anybody twisted enough to use it for biological weaponry.

karmakaze 8y ago

Thoughtbytes: > a growing body of literature suggesting that the immune system is involved in psychiatric disorders from depression to bipolar disorder > Austrian physician Julius Wagner-Jauregg developed a method of deliberate infection of psychiatric patients with malaria to induce fever. Some of his patients died from the treatment, but many others recovered. He won a Nobel Prize in 1927.

loceng 8y ago
I don't have the links to the studies, however function in some set of autistic children would have temporary improved capabilities when a fever was induced in them. Quick Google search has some results including https://iancommunity.org/ssc/fever-effect-curious-phenomenon-autism https://iancommunity.org/ssc/fever-effect-curious-phenomenon...
stenl 8y ago
Julius Wagner-Jauregg specifically treated neurosyphilis, an infectious disease, not just any ”psychiatric” disorder. That makes it perhaps less surprising that activating the immune system should have an effect. Today neurosyphilis is treated with antibiotics.

torpfactory 8y ago

Just a friendly reminder not to get medical advice from anonymous strangers on the internet. There are some pretty serious interventions described in the comments below as things you could try at home.

olliej 8y ago
Also don’t use webmd :) See an actual clinician
DoreenMichele 8y ago
Just a friendly reminder to also not confuse conversation on the topic with a recommendation that "You should do X!" Some of us are just talking and that's it.

DoreenMichele 8y ago

When penicillin was first used to treat syphilis, thousands of cured schizophrenics were released from mental asylums. https://www.newsweek.com/diseases-mind-133263 https://www.newsweek.com/diseases-mind-133263 I've apparently submitted this article three times, the last time 18 days ago. It's never gotten traction. I have a long history of viewing mood issues and the like as somatopsychic side effects of medical issues. I tend to ask my sciency son to "Look up X" when I'm having an issue. I'm talented at asking the right questions. He's talented at getting back to me within an hour with the info I need, plus supporting links. Then I typically go eat a thing and stop being such a fruitcake. Some things I've done: Consumed foods containing rosemary or sage to calm extreme anxiety because I was clear it was brought on by withdrawal. Consumed beef with potatoes to mediate the salt-lithium connection and prevent both woke bi-polar like mood swings and suicidal tendencies. Consumed oranges for the vitamin c to put a stop to out of the blue rage. See also: https://news.ycombinator.com/item?id=16607422#16608139 https://news.ycombinator.com/item?id=16607422#16608139 https://news.ycombinator.com/item?id=16140867 https://news.ycombinator.com/item?id=16140867

stef25 8y ago
> When penicillin was first used to treat syphilis, thousands of cured schizophrenics were released from mental asylums Syphilis itself produces psychosis and those "schizophrenics" were most likely never schizophrenics in the first place (shame on you Newsweek) https://www.ncbi.nlm.nih.gov/pubmed/11186166 https://www.ncbi.nlm.nih.gov/pubmed/11186166 https://www.ncbi.nlm.nih.gov/pubmed/1521109 https://www.ncbi.nlm.nih.gov/pubmed/1521109 If those diet based treatments work for you then that's great but, respectfully, I think everyone should take those statements with a serious pinch of salt (no pun intended) Edited 2x for brevity, grammar
- deleted 8y ago
  [deleted]
- perl4ever 8y ago
  Anecdotally, I've heard of and seen nursing home patients and other elderly people that have seriously altered mental states, with anger and/or disorientation, that recover immediately with antibiotics, where the medical people describe the infection as a UTI. And also in my experience, even once it's repeated a couple times, they can be obtuse about inferring the mental changes are a sign that they should treat with antibiotics. I've also seen a cancer patient on chemo with symptoms that resemble some forms of psychosis, and of course that is someone who is immuno-compromised and susceptible to opportunistic infections. So I think that probably syphilis is only one example of an infection that leads to an altered mental state, and there's no reason to assume that because something is treatable with penicillin, that is is necessarily syphilis.

acrossthepond10 8y ago

Is anyone else interested in crowdfunding a scientific study to explore this link? This is not my area of expertise but as someone affected by this I would like to contribute to finding some answers even if it is at the home lab level.

perl4ever 8y ago

Something I ran across in a newsletter about medical research recently was that a doctor examining patients with treatment-resistant depression determined that there were (treatable) metabolic abnormalities apparent in cerebrospinal fluid. Normally, blood tests are all that is done to rule out such things, but that may not show the problem.