27 Apr 2018
Author
Jim K
Title

Website Wish List

Body

This is the place for things you would like to improve your experience here. We'll collect this for a time, and then see what our webmaster can do to improve things.

Comments

As one who has been caught out with a squashed comment box for messages can some basic user tips be included around here eg. to resize the box click and drag from the lower right corner?

Perhaps an FAQ link for board use tips can be included in the top menu ?

Carol

Currently displaying a bad ping rate between brain cells. (Well that's my excuse anyway...)

speedbird

Hi Jim, 

I think the most awkward problem might be difficult to  solve, and that is the impermanance of an unposted message, ie a message that has been started but not finished, left to go and find a link or such... and in the process is lost.   That probably has something to do with the way the website was initially designed.

Other things that might be solvable are enabling rich-text as default and making images attachable to messages and post without the need for a url. In other words being able to download an image directly to a message or blog without the need to place it in the image gallery.

Also whilst talking of the image gallery, it might be useful for users to be able to create an album of their own.   I notice that you can do that but I have not found the way to do it yet. 

Michele (UK) GFA: Wheldon CAP1st May 2006 . 26th March 2007 continuous Flagyl at 400mg with 5 day pulses at 1200mg every three weeks. Spokesperson for Ella, RRMS Wheldon CAP 16th March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Chatbox seems to have disappeared.

 

Also, I think there should be a 'READ THIS FIRST IF YOU"RE NEW HERE' section.  It could be attached to FAQS, because everyone asks the same questions over and over when they first arrive at the site.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

It would be quite useful if search results could be ordered by date, author, etc.

basil.

If cats are outlawed, only outlaws will have cats.

I think it would be helpful if the "exhaustive list" of diseases associated with Cpn could be a standout list as part of the Handbook.  Not in paragraph format, but a bullet-point list.  The handbook itself could be more helpful if it was easier to read.  Lists, different format, definitely clearer direction regarding the protocols. 

 

Goodwife

Hubby dx scleroderma Aug '06; Mino 200mg/day Nov '06; Cpn/Mpn Jan '06; NAC Feb '06; Azith Feb 14, '06

Hubby dx scleroderma Aug '06; Mino 200mg/day Nov '06; Cpn/Mpn Jan '06; NAC Feb '06; Azith Feb 14, '06

Hi GW, the handbook is under reconstruction as we speak with a view to organising it better to make it easier to read and find info.

Michele (UK) GFA: Wheldon CAP1st May 2006 . 26th March 2007 continuous Flagyl at 400mg with 5 day pulses at 1200mg every three weeks. Spokesperson for Ella, RRMS Wheldon CAP 16th March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

I wish there was more seperation between the diseases in the forum so people will know which disease the writer may be referring. I know you can add an address line but not everybody has done that yet including me.

 Steve- I appreciate the feedback. Originally in starting the site, my intention was to resist grouping by disease as I wanted this website to promote the recognition and comparison of the many problems caused by Cpn. I was concerned that we would create isolated sub-communities and lose the compare/contrast data in treatment.

Perhaps we are now at a place in our development where it would serve us better to break down the "disease" forum by the particulars now. Certainly more helpful to new folks I would guess. Any current opinions out there?

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 200 Doxycycline, 500mg MWF Azithromycin, 500mg Tini daily (Continuous protocol)

Hey Jim,

I am a newcomer & I like the fact we are all together because I have the benefit of seeing likeness in cross over symptoms.  In all the illnesses on this site there are similar symptoms in other illnesses.  That of course, in addition to the commonality of how Cpn travels inside our bodies regardless what disease we have.

The differences between the people & reactions to meds & supplements is of benefit for me.  I finally put up my signature line on reminder from a more senior person than me.

Just my input, if you decide to change it that is ok too.  I have a hockey game to watch & it is 32C here today!!  Gooo Ottawa Senators!!! Booo Anaheim!! LOL (actually I think there are just as many Canadians on each team, so it is a technicality)

Blessings

Ruth

CFIDS/ME, FMS, IBS, EBV, Cpn (375 mg Metro, Minocycline 100mg 3Xwk, Nystatin 500,000U 3 tabs 3X day, Fluconazole 100mg 1X wk), Babesia, insomnia (take melatonin, GABA, tarazadone, temazepam, novocyclopine, allergy formula), peri menopause, starting NAC

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

I'm with Ruth on this one.   I don't think there is enough specific differences in which the treatment affects people with different diseases, I think that each of us is different, some of us are much sicker than others and therefore will have much clearer and severe reactions than others but many of us have symtoms that transcend our diagnoses.  Whilst some have symptoms that reflect the locus of the infection, many of us have suffered the brain fog, anxiety, fatigue, depression, breathing problems, porphyria etc.

So I vote we continue to muck in together but make our signatures tell our story.   It is not that hard to do.... 

Michele (UK) GFA: Wheldon CAP1st May 2006 . Daily Doxy, Azi MWF, Flagyl at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMS Wheldon CAP 16th March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

I wish that demonstrated facts and interesting hypothesis are clearly differeniated on this site.  As we do not know the full extent of CPn involvement in diseases in humans, I suggest that we focus on the bug CPn and its treatment (read the 100 page CPn and cardiac disease paper if you think you understand what CPn does to humans and explain the possible implications for me).  We know that CPn is involved in many subsets of MS but for most other diseases the evidence is sketchy in scientific terms.  The choice to use CAP is empirical (suck it and see) in most cases but as the drugs are cheap, oral and relatively safe then there is not a lot to loose.  For me, this means that giving lots of info on particular diseases is not logical.  Really all we can state (beyond reasonable doubt) is that CPn is implicated in xyz.  Good luck with the re-org, whatever you decide it will have critics.   Mark.

Mark Walker - Oxford, England.

RRMS Nov 91, Dx 97. CFS Jan03. CAP (NAC, Dox, Rox) with Copaxone Feb06. Monthly met pulses, from Jun06. Pharma Consultant (worked til Jan03).

Mark Walker - Oxford, England.RRMS Nov 91, Dx 97. CFS Jan03. Copaxone + continuous CAP (NAC, Dox, Rox) Feb06 to May 07. Met pulses from Jun06. Intermittent Abx from June 07 onwards.

I wish that this site wouldn't crash every time I try to read the thread on evidence based medicine.   It's not the computer as it doesn't happen with any other site but on here there are several threads I can't open, any idea what's going on?

Elinor ..... from England  on CAP, doxy/roxi/tini  for ME/CFS/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

Elinor ..... from England  on CAP, doxy/roxi/tini  for ME/CFS/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

Ok, I have zero problems with the evidence based medicine thread. Where did the chat feature go, though?

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

It may be time for some website maintenance. A couple other users have reported problems. I'll ask Bleu to check it out. 

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Tini daily (Continuous protocol)

As crazy as this sounds, I would like a page with  explanations of abbreviations.  I have no idea what RRMS, ME, cfids, etc stands for..
 

Memphis, TN. 6/26/07- CPN Titer 1:256 (normal 1:16); 6/27/07-started NAC; 7/2/07-started doxycycline 100 mg twice daily

Mphs, TN. CFS, hypoT (Hashi), adrenal fatigue, hormonal inbalance. right arm neuropathy-getting better. cpn, myco, EBV, CMV, HHV-6. Cap began in 6/07. NAC 2400mg, mino 100mg bid, biaxin 500mg bid. cytomel, flagyl bid continuously.

Thank you, Sharon. I agree. It would help if people would at least spell it out the first time when they post, then use the abbreviations for the rest of their paragraph, but that never happens.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

 Actually, we just need to update the glossary with these terms, so that you can point at the little note thingy on the word and get the definition. On the list with all the other things I don't have time for! But collect any words here that need definition.

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Tini daily (Continuous protocol)

I like the seperation of diseases because even though there are similarities in the way they begin and treatment, as a somewhat newbie I still kind of tend to look for success stories within my disease despite knowing the cause may be similar. And it gives me more hope this way. I also don't know many of the abbreviations on here.

31 year old woman in Portland, Oregon. Living w/Sjogren's since June 2006. Super dry painful eyes, dry cotton mouth on liquid diet little saliva, dry soar throat, dry nose can't breath, dry skin, dry hair, stomach bloating and fatigue. 

31 year old woman in Oregon. Living w/Sjogren's, peripheral neuropathy & unexplained dizziness since 6/2006. On CAP since summer 2007 & Infrared TX. Doxy 2X a day daily 100mg each, Zith 250mg 3X a week, Flagyl every 3 weeks for 5 days &

My wish is that there could be some way to flag in a way easily to find, the blogs of the CFS/FM users.  Reading the success stories of the MS healings the morning that I was to fill my first doxy ( Rx 200mg twice a day (BID) ) inspired me and I stopped at the Health Food Store and to get my NAC.  I started the NAC 600mg prior to my first dose of Doxy with which I took 600mg more of NAC!   Not to be recommended as I now have learned.  I did have my CPn titer results in hand 1:512 High and after quickly learning about the need for covering the EB's I was game and added it to my list of supplements.

I expected Herx-like results from my several hours of reading in the vastness of this site as a guest, and my contact with some Lyme Disease positive friends (though I was not yet dx with Lyme and the following month a positive wetern blot following Doxy therapy was drawn).  I was majorly effected by the Doxy and NAC and had difficulty even registering as a user, it just would not go through for me (Cognitive impairment, brain fog, lack of skill, unable to digest directions, all these are possible and probable.)

I am not for segregation, as Michele and other on this thread I agree with the general opinion that the CPn is managed with the same protocol and all voices have something valuable for me to hear and learn.  How

However, is there a way that brainfogged folks could be lead by the click, so to speak to a few key blogs or forum links that could help them get it that this protocol is for their constelation of symptoms and the particular challenges of starting to fast which causes some to give up.  I see the MS folks as generally more determined in some ways because they know from experience much of what else they have tried has not helped in a sustaining way.  ME/CFS, FMS and other conditions generally have less mobility and neurological impairments to convince them to stay the course.  How did Rica put it, it was so good in a welcome yesterday about making oneself feel sick to get weller.

I would say that proportionatly there are more MS signatures posting, could be that they often have a longer recovery period and are more vigilant in watching the posts.  I have learned much from them but newbies breeze in and say I don't have that dis-ease and may be more prone to leaving.  Or once a ME/CFS, FMS signature gets to feeling weller life goes on and the visits slow down and the posts become more rare.  The posts are there now that I have been able to dig and come across them and they are valuable and alas more difficult for the foggled to find.

For me I think I have almost figured out how to use the system so that is WONDERFUL and the bookmarks is helping keeping the information in my line of vision.   I know Jim,  I have been asking for less block, now I more blocks. Image removed. Think I have said quite enough for now.  Hope that some of what I have tried to say is understandable.   Louise 

Louise, US, Northern New England,   CFS/FM,CPn,Borrelia B.     Started NAC 6/24/07 Doxy400, NAC1200.  Currently 9/24/07, Doxy 200 mg, NAC 1200 mg.

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

Louise have a look at the box on the left where your account can be accessed. Below that is an option for "category browser", if you click on that you will be led to a drop down menu where you can choose to view all topics related to different diseases, antibiotics and lots of other subject categories.

I have just found this wonderful way of being presented with all the MS information I could want! 

HTH Carol 

New Forest, UK. Progressive MSi dx 12/06 LDN 3/07 CAP 6/07: Wheldon

speedbird

Thanks Carol, Yes that is one way of getting all and any thread that has been defined correctly and it is too huge for those with fatigue and cognitive challenge theat is rather profound, in my humble personal experience.  And much good info has been added in various other catigorizations.  I am just starting to get the structure of setting up a good forum queston and that I can put it under a number of subheadings etc.  Those aspects of using this wonderful site that make it searchable.  

Louise, US, Northern New England,   CFS/FM,CPn,Borrelia B.     Started NAC 6/24/07 Doxy400, NAC1200.  Currently 9/24/07, Doxy 200 mg, NAC 1200 mg.

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

 Well, Louise, perhaps you have assigned yourself a project for the community: a set of links for the CFS/ME/FMS that are the "read first" or "read these before starting," as you are fresh to it and have probably found these (or are finding them) as you go. This kind of thing can't be done automatically by the system, but has to be selected by a person or two who can say, "When I found this post, it made sense..."

Would you like the editorial assignment? You don't have to do it alone. Post a forum thread and have new folks add their "essential reading" links. Then you can sort them out, or we can put them to a vote (there are ways to do this). 

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 200 Doxycycline, 500mg MWF Azithromycin, Tini pulses.

Yes Jim, I would like to take on the challenge of flushing out this idea and focalizing the project.  Will think of a topic line for a forum thread for new folks and start that avenue of input sometime soon.

However, I see that this community project would well use the input from the ranks of the more seasoned users with past and/or less and less bothersome CFS and Brainfog "foggled" issues to pick out the gems of inspiration for the "foggled among us". 

Clarity is returning for me in waves, now into my 4th month on NAC and Doxy.  Before I started on the CAP 6/24/07 Reading was a real challenge to stay on track, absorb it, retain it and not fall asleep trying to do it!  I would like to add a site aid for folks who are challenged in similar ways as when I arrived here! 

I am letting your challenge sit a bit with me. How to sort it all out and  to get more of the BEST of THE BEST ME/CSF posts easily accessible on the surface as it is with the BEST of THE BEST MS info, IMHO of course I will add.   There is so....... much here it is overwhelming for those in need of it that are experiencing limited focus. 

For now I will continue this discussion on this thread and see what posts show up.  Thanks for listening.  Folks on this site do really listen. Got to close, I am feeling a wave of that attitude of gratitude sweeping over me.  Louise

Louise, US, Northern New England,   CFS/FM,CPn,Borrelia B.     Started NAC 6/24/07 Doxy400, NAC1200.  Currently 9/24/07, Doxy 200 mg, NAC 1200 mg.

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

I'm adding to the list to bump up this thread.   Please add some wish list items for the website.

1. ability to change username.

2. category search engine.

3. Alphabetical listing of members.

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse. Zoo keeper for Ella, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Alphabetical search of members! Yes, yes, yes! Thanks for remembering this one, Michele.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

I know I've mentioned this before, and can understand if it can't be done.

What about a very small facility on the site, so people who are bedridden and can't use a laptop, but only a mobile phone for short periods of time using WAP, can access a small part of this site to just type in hello sometimes - like Paula?

:-)

Mark. 

UK Carer of bedridden Severe ME/CFS Feb06. CPN dx. Apr07. Samento 15 drops per day July07.  2400mg NAC 200mg Doxy Jan 08.

UK Carer of bedridden Severe CFS Feb06. Tick bites Summer04.  CPN dx.Apr07. Borrelia dx Sept08. Samento 15 drps daily July07.  200mg Doxy Jan08.  300mg Roxy Apr08 Stopped abx Nov/Dec08. Building up on Supps again.

great ideas,

I was wondering if we could have the wording that pops up on the search engines refined somewhat so the money aspect isn't so prevalent?  just a thought

CFIDS/ME 25yrs, FMS, IBS, EBV, Cpn, (insomnia - melatonin, GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse8 750mg 4day,375X1 3-24-8

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

I just searched cpnhelp and chlamydia pneumoniae on google and on yahoo and got our website, wikipedia, some science sites... I didn't get anything on money aspects, so I was wondering what you're finding, since I can't duplicate it.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Ruth, I too can't get any results that have anything to do with money.   What did you put in your google box.   Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse. Zoo keeper for Ella, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.