CAN I ???

another question...Sarah and others please help...My neuroi ordered 3 days of steroids...can i do this with CAPi or no? thanks in advance!

Comments

Hello everyone and thank you

Hello everyone and thank you so much for the response's! Sorry for the confusion but I have not even started NACi yet! lol...I am waiting to better tolerate the antibiotic first...thank you all for the advice though! Tell Erica she is not alone! :)

 

God Bless!

Evita, Boadacea,

Evita, Boadacea, MacIntosh,

Erica will look at these comments later today. We both REALLY appreciate your input. The idea to take the abxi until it becomes like eatring candy is funny  and helpful!  I think we get in more of a hurry than we realize, until somone on the "outside" points it out to us.

Maybe E. will tell me what she wants to say to you and I will type it for her.  I LOVE that you took the time and effort to explain so carefully. Thanx again.

MSmom

MSmom  Erica's treatment

MSmom  Erica's treatment and her bad reactions strongly reminds my story. My reactions to NACi I described. I managed Doxyi not so bad but Azi again almost killed me. I reduced the dose several times to once or twice a week till I could tolerate MWF. Once I can remember I was really very bad and I phoned my husband and he came home immediately and wanted to take me to the hospital. Of course I refused but fortunately as he came home I started to be a little better so after an hour I told him to go to work because I was better. Then the next story was my pulsing. I still looked at the calendar and planned when I was going to start pulsing as Erica does. And as always I didn't feel like starting pulsing I postponed the start always in a week. I was stressed as Sarah started pulsing after 3,5 months but I thought then it was after 3 months and the Sarah's treatment was the model for me so I followed it. So I did my first pulse sometimes at the end of Nov (I started the treatment in Aug as Sarah did) and I was very unhappy to be late with the first pulse. The first pulse I managed with no problem 5 days 2x500 mg Metroi. But now I know that in fact it wasn't so. I started the first pulse when I had much reactions to abxi. I thought it was ok the reactions were not so bad and during the pulse the reactions only worsened but I couldn't realize it as if you are very bad and then when you are worse you can't see the difference. So I did the next pulse but after the first day I got swollen not much but terribly much. My face and mostly the right part, my nose, cheeks, eyes, forehead were swollen so much that when I looked at me in the mirror I couldn't know the person. It wasn't me, it was someone else. Also my ankles and feet were swollen much They were twice bigger than normal. So I called my doc she told to stop immediately and the she wanted me to stop pulsing for good. But I persuated her and the next pulse I did 5 days but the dose was 2x250 mg. It wasn't so bad. But before the next pulse as I felt much toxic and I wanted to get rid of toxins so I drank much water which stayed in my body and I got into coma. Then there was a 3 months break and when I  started again I took abxi differently. I added the next abx when there were no reactions. No reactions for me meant I ate abx as candies. So I didn't know I had taken abx. Only then I understood what no reaction means. And I started pulsing with 1 full day and I added 1 day in each next pulse.

I hope this may help you and Erica to decide whether to start pulsing or not.  Planning beforehand when to start pulsing is the worst thing what you can do. The best is to start when there are no reactions for at least 2-3 weeks. Planning makes you stressed and it doesn't help. I think you have decided right to try to ad NAC slowly first. Erica should be on the dose 2x600 mg. I am on this dose too but I should increase to 2x1200 mg. You also helped me to realize that the cause I couldn't tolerate 2x1200 mg was I did it in one day and after 2 weeks I was very bad. As boadicea writes it isn't NAC itself that isn't tolerated but they are toxins from killed cpni. And it seems I have still much EBs as I can't tolerate 2x1200mg. So my goal is to increase NAC to 2x1200 mg but SLOWLY. 

 

MSi for more than 30 years, WP since July 08, break Jan 09-March 09. NACi 2x600mg, Doxyi 2x100mg, Roxi 2x150mg, Entizol in pulzes, LDNi, supplementsi.Since May 2013 without abxi.

In the same vein, if she

In the same vein, if she decides to start pulsing now, there's no law that the pulse must be five full days. How about setting a max of two days the first try? If one pill flattens her, stop with that. If she feels great after two days, stop anyway. Reactions often don't show themselves immediately.

That being said, I did the full protocol from the first day (full doses of doxyi and azith the very first day) and started pulsing at about the seven week mark.  No bad reactions, no debilitating aftermath.  I still advise people to be more cautious than I was.  I'm naturally inclined to go fast, drive fast, race to the finish line, get the task done before everyone else, etc. 

Battling this disease is not something you can really do 'fast', so it's better to be kind to yourself as you go through treatment.

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

Evita‘s right – NACi can

Evita‘s right – NACi can be very difficult to cope with, but it’s also a very potent ally in our battle.  Slowly has to be the way.  I don’t think it’s the NAC per se which make us feel so rotten, but the NAC’s effect on the bacteria.

MSmom – are you absolutely certain that E isn’t trying to start pulses too soon by setting a date of 1 September?  Sarah’s suggestion was not to start until September at the earliest.  But you don’t have to start at exactly 3 months into treatment.  Everything suggests that slowly is better.  It’s been sounding as though E has had a difficult time with the abxi – is she certain that everything is now being tolerated well enough to move on?  I realise all of this has to come down to personal choice, but I would be inclined to try to get NAC established, even if only at a low dose, first, and let the abxi have more time to do their thing.  Sorry if it seems I’m interfering, but I just don’t want E to have to struggle more than absolutely necessary.

The abx are proving to be completely  debilitating for me just at the moment (since I increased the dose of doxyi).  I’m naturally very impatient, but keep reminding myself this is a marathon, not a sprint. 

If E decides it’s time to move foward – fingers crossed it all goes smoothly.

 

Neuroi symptoms & many health problems from 1989. NACi+all supps(04/11) CAPi(05/11)

Evita,Thank you. Sugar

Evita,

Thank you.

 Sugar Glider, Erica, and I are all new at this WP. I went back to see exactly what Sarah said about NACi. She did not say it was OK to not take NAC; she said it was OK to reduce the NAC as needed. 600mg or more  NAC makes Erica so sick she cannot stand it. She is already on the full doses of Doxyi and Azith , waiting to pulse Tini  on the first of Sept.  She plans to give the two abxi time to be "well tolerated." After that she had planned to start Tini slowly. Perhaps she should start NAC at 200 mg , increasing it like you did and THEN start Tini. For two months she took NAC at 2400mg every day. Then when she realized that NAC was what was making her feel SOO bad, she reduced it to 1200. The 120m lasted a week. That didn't help either. Which is why, last week, she got off NAC altogether.

She and I would both appreciate your suggestions.

Thank you, Evita!

MSmom

MSmom and Jill I am sorry

MSmom and Jill I am sorry but I am afraid I can't agree with your theory to stop taking NACi. I think if someone can't tolerate NAC he shouldn't start pulsing. I think Sarah took amoxycilin instead of NAC. Amoxycilin is stronger for EBi. It shouldn't be wise not to take anything for EB. If someone can't tolerate NAC the dose can be built up gradually. After taking NAC I thought I was going to die. I couldn't breath and wasn't able to speak or to produce any voice. I also walked much worse but as I couldn't breath I was just sitting, drinking water and waiting if I was going to die or not and I didn't care about walking. Before starting NAC I was afraid of reactions so I tested my reactions to a low dose of 200mg first. And I had so bad reactions to this dose so I believe 600 mg would kill me for sure. But what was interesting when taking 200 mg these bad reactions stopped after a few hours and I was fine and even better and walking also wasn't worse then. So I took for some days 200 mg till I had no reactions and then increased to 400mg, again bad reactions and maybe in 3 weeks I could take 600 mg and I tolerated it maybe after 6 weeks. But I didn't take doxyi or roxi then. If you can't get 200mg NAC I would take NAC 600mg then waited till there are no reactions to it maybe for a few days and then take the next 600 mg NAC and I would do this till I tolerate 2x600mg. And you can stay on this dose and sometimes later maybe in a few months you can try to increase to 1200mg. Maybe after 2,5 years I only tried to increase to 1200 mg but I couldn't tolerate it for longer than 2 weeks so I came back to 600 mg. Maybe later I will try again to increase to 1200 mg.

MSi for more than 30 years, WP since July 08, break Jan 09-March 09. NACi 2x600mg, Doxyi 2x100mg, Roxi 2x150mg, Entizol in pulzes, LDNi, supplementsi.Since May 2013 without abxi.

Hang in there Leetz! I agree

Hang in there Leetz! I agree with MSmon, try cutting out the NACi for a while, see if that helps. Everyone on here seems to think that setbacks are temporary. I don't like to give any medical advice but I think, if it were me I'd try and avoid the steriods. Take it really easy and be kind to yourself.

Keep us posted on how you're going, there are lots of others who have been through this.

We'll get there eventually!

Jill

RRMSi diagnosed 1996. Many years of weird symptoms before this. Started CAPi around 6/11? Minoi 200mg daily, Roxyi 300mg daily, Tinii pulses started 11/11 (very tentatively!) Major problems with headaches 01/12, substitued mino with doxyi.&l

Leetz,NACi makes Erica's

Leetz,

NACi makes Erica's walking horrendously worse. In fact the stiffness and pain are so bad, she has decided to forgo NAC for awhile. Because Tinii and Flagyli both help destroy the form of Cpni that  NAC does, she decided to let the Flagyl do the job when the time comes for pulses.. Sarah never had NAC the first year she was on the protocol. It seems not to have caused her problems. You may find pain  and walking relief in something as simple as forgoing NAC until the abxi you are taking are "well tolerated." A few weeks relief can give you the courage and stamina to keep on keepin' on(!). You already know that the pulses may very well cause more Herx . I am NOT telling you to stop NAC. I am telling you to experiment a little, ask for advice from the senior clqss, and then go with your best judgement for YOU. Sarah told us that, NAC is neither an antibiotic nor an addictive drug. It may be reduced whenever desired.

We're wishing you WELL!

Erica and MSmom

 

 

thanks  guys..it would not

thanks  guys..it would not be prednisone it would be the IV form solumedrol...still have almost a month but think i might decline it...walking is getting worse though so i am thinking its a herx reaction?

Ooops, Sorry, Sarah. Your

Ooops,

Sorry, Sarah. Your answer wasn't posted yet while I  was writing our experience  with Leetz' question.

MSmom

Leetz,This is WAAAY over my

Leetz,

This is WAAAY over my head, but since no one has yet addressed your question about prednisone and the CAPi,(and maybe you need to have an answer immediately), I will tell you  our experience with the same question. This answer was received before I had explored the Cpnhelpsite. Initially, we were in contact with Garth Nicolson at Immed .org, using his Treatment Considerations to plan Erica's  abxi regimen. Abxi for Mycoplasma and Cpn were essentially the same. I discovered Cpnhelp blogs a few days later. Erica was one month into abx treatment, with awful Herx. She was looking for some relief. She asked about using cortisone. This is the answer we received from Dr. Nicolson: "We don't recommend any immunei-depressing drugs. In particular, we don't recommend prednisone..." 

....For what it is worth, Leetz..... Like you, I wish David or Sarah would give his expert advice on this one. In our case, Erica opted to NOT use steroids at all. We're now totally on David's  CAP, thankful for the Nicolsons' research and generosity, but choosing David's CAP expertise  specifically for M.S.

MSmom  

Leetz, steroids are

Leetz, steroids are sometimes useful to help someone get over a bad exacerbation, but the trouble is, they encourage the growth of Cpni.  However, it is also sometimes useful just to keep the neuroi quiet.  Personally I have never taken steroids because I know what they did to a very good friend.  He was on them for many years, though .................... Sarah

A  Journey through Light and Shadow

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

 Leetz,Over the course of

 Leetz,

Over the course of Erica's MSi, MUCH solumedrol and prednisone were ordered and swallowed by Erica. Except for one time, it always gave her some relief. It also gave her Renaud's. I assume there is a taper with the three days of Prednisone ordered for you. E uses Percoset and Valium for pain relief.  Everything else as strong or stronger,gives her hallucinations and/or  addictions. The Reynaud's is SO bad, E won't even look at Prednisone anymore. It did a lot of damage.. This does not address your CAP/ Prednisone question, but it is a word to the wise if ever more and more prednisone is ordered. 

MSmom