Cpnhelp.org

hi,

since 12/9/21 im having depressive symptoms. i guess its coming from the CAP. im currently on doxy 100mg and azi 250mg mwf. ive had worse depression in my life before this. yet this is not very nice. i have no motivation to do anything. if i do something i have no joy doing it. i feel numb emotionally. i read here on the forum its a quite common thing while being on cap. 

ssri is not an option. ive read that sam-e might help (omg another supplement? i have no motivation to try anything new tbh).

anyone has an idea what i can do? i think its coming from inflammation/die off in my brain. sometimes i can really feel it in my brain that there is something like inflammation happening.

i use chlorella, q10, grape seed extract, vitamin e, vitamin b, l carnitine, nac, sod, pimrose.. like a lot of the recommende things already. 

anybody has any tip what i can do? just take more antioxidants? im reluctant popping another ibuprofen because i dont want to cause another problem for my body with this medication longterm. 

any input is appreciated.

Marvel you are sensible in not wanting to take an ssri, but the question I would like to ask is why you feel depressed in the first place. Has it just started since you began treatment or were you prone to it before? I became profoundly depressed after I was first diagnosed with profound secondary progressive multiple sclerosis, but a few days later David came home with a packet of doxycycline and told me to take the full day's dose together. So after a bit of arguing, I took 200mg of doxycyline all in one go. The result of this was that it gave me the runs, so the next day, I divided the dose into two amounts of two lots of 100mg. A couple of weeks later I started taking 300mg of roxithromycin, again divided into two and was starting to improve even before I started to take metronidazole. Depression vanished.

Sarah

.

Marvel, which actually came first, the depression or the Cpn? I am asking because real depression has never really been part of my life apart from the few days when I was told by my neurologist that my painting days were over. Then I sat in my studio and cried and cried whilst David was at work. But luckily it didn't last for long because before the weekend David came home with my first pack of doxycyline and he told me to take the whole day's dose of 200mg in one go. With me things started happening that very night.

Sarah

Marvel, when did your depression first start? When you took your first doxycycline or sometime after? I wish that I could help you but the only time that I have really suffered from depression was after my MS turned progressive and I realised what was happening.

David was astonished at what was happening to me and spent a few days of solid research. He discovered the research that was going on at Vanderbilt University Medical Unit, came home and started the treatment with a pack of doxycycline.  I had only taken antibiotics once before, for five days but I started to feel some improvement so quickly that my depression vanished.

Sarah

Are you sure that it wasn't building up before and then afterwards CAP became the obvious reason to you?

Sarah

the depressions are finally gone. they went away i think after around 4-6 months being on azi and doxy

i started my first metro pulse 9th of june 4 days of metro 400mg per day only. 

then i had food poisoning which is unrelated to the cap and i took a break from metro to give my microbiome a rest. 

took second pulse of metro starting 25th of july 5 days 3x400mg which was too much but i was getting so frustrated and impatient i wanted to do it. now im regretting ot of course. 

im still suffering from the fall out which is not depression but rahter pain. today i took a prednisone 5mg to see if it helps because today my headache is too much. a finger of my hand has a pain for some days now too. my left eye was light sensitive after the pulse. my right i gave me shooting pain which fortunately only lasted for some seconds when it appeared.

sometimes i think this disease can never be beaten even with abx. also its a long and painful process being on the abx. the results are there though and the abx are working. i have no choice i have to keep on taking them. 

doing some sauna once in a while to help with the treatment if i feel i can take it. 

im open for further suggestions which could help me with in any way. im not sure yet if a mycoplasma infection plays a role in my case too. the antibodies are positive. treatment is basically the same though. 

the doctors are still not very helpful in the whole process because theyve never done something like this. 

im improving on the cap. ive started with a metro pulse of 5 days 400mg metro. after that i did 2 full metro pulses the next 2 months because as usual i was getting impatient and as usual that was a big fat mistake. the die off or whatever it is is really kicking in delayed. the peak was around 10-14 days after finishing the full pulse. i needed a lot of ibuprofen. im currently on the next pulse and this time ill only do 3 days 3x400mg metro. i promise ;D on the second day i can feel it already that my mental capacity is even diminishing below my already low baseline. hard to remember anything short term for me and concentrating. 

my antibody test came back negative for cpn now. which of course does not mean that im anywhere near cured as my symptoms are still there and im still improving step by step.

im worried about mycoplasma pneumoniae though. the test was positive in the beginning when i got onto the cap. now its borderline, close to positive still. 

i upped the intake of azithromycin because of mycoplasma pneumoniae to 500mg mwf. unfortunately i dont know if i have any other mycoplasma species but i dont want to swallow another antibiotic anyways now so i hope im good with the current ones. according to nicolson (immed.org) mpn is more susceptible to azithromycin. thats why i increased it. he actually recommends to take it 500mg/day in case you want to treat a mycoplasma infection with it. compared to that i started on a low dose of 250mg mwf and only realized after being on the cap for 10,5 months now that this might have been a stupid idea in terms of resistance developping in mpn. well thats my fate as i cant find an educated doctor on the subject and i have to figure out the treatment on my own with all the brainfog i have. recipe for disaster. 

but anyways i cant change it now and i think about upping the dose to 500mg/day but im kind of reluctant to it as i would consider it quite a high dose. ill certainly get my ecg done very often when i do it. ill also add potassium for the heart.

just putting my thoughts down here in case someone has another tip for me or its useful to someone else. would like to do more research but im really disabled with my cognition right now. 

Hello Marvel, I am sorry that you still feel disabled in your cognition because since you are not writing in your native language, you are writing very well.

i finished my next pulse of metronidazol. 4 days this time. its day one after the pulse. i see this pattern that when i take the metro my ankles get lighter on the second day and i can also read longer without getting exhausted. but after maybe 10-14 days later after i finished the pulse those benefits disappeared again in the past. ill still have to watch if it happens the same this time. 

is this an indication that the bacteria are growing back and getting in their cryptic state faster than the other antibiotics involved can hinder it in their replication? or maybe they can switch from cryptic to EB or RB when the cryptic ones get killed. i dont have ms but i suppose my bacterial load is quite heavy as its said to be more heavy with cfs patients for example than with ms patients.

its kind of worrisome. anyone had a similar experience? i mean im still at the beginning of those pulses and actually you could still take the metro continously if the pulses every couple of weeks wouldnt do the job. 

just putting my thoughts down here in case someone can make a use out of it.