I know there are those who believe that the Wheldon or Sriram/Stratton CAPs are the only method for treating C. pneumoniae. I do believe these treatments have and will work for many people with C. pneumoniae related illnesses, but, although I have no medical background, I also believe whole-heartedly that for some, other pathogens and other deficiencies may play an important role in their illnesses. To me, this is just common sense, supported also by studies that have been produced in many of these diseasesi...
I also believe that since so few doctors are willing to prescribe CAP therapy for C.pneumoniae related illnesses and since CAP therapy often produces very difficult die-off and secondary porphyriai related reactions scaring many away from treatment, a simpler more easy to adhere to therapy must be found if C. pneumoniae treatment is to be more widely accepted and practiced.
Other than now being absolutely certain that pathogens were, and to a greatly reduced extent still are, the underlying cause of my own ailments, god only knows the total number of pathogens that were/are involved in my own particular case. I had rosaceai, IBSi, chronic cluster headaches, exercise-induced asthmai-like symptoms, allergies, fatigue and other ailments prior to finding CpnHelp. I now mostly only have a few allergies left as symptoms, and even these continue to fade away with continued treatment...
I've not bothered to do any testing for specific pathogens, and have never even done antibody testing for Cpn. I did, however, react rather dramatically to NAC and antibioticsi in early treatment and experience large amounts of secondary porphyria before and during treatment, so I'm pretty certain Cpn was fairly heavily involved for me. Dr Stratton suggested to me (and confirmed my own suspicions) that rosaceans are likely suffering from the effects of Cpn-related secondary porphyria in spades, with what he suggeted may be an excess build up of fat soluable porphyrins in our skin. I believe other ailments may involve more secondary porphyria than still other Cpn related ailments, and this may be why some of us have such a difficult and scary time in CAP treatment.
Were additional pathogens involved in my case? I'm guessing so, in that I also had problems with seb derm and tinea infectionsi prior to CAP. I also reacted rather oddly to Ivermectin when I used it for rosacea, and I'm thinking it may have been killing of some other intestinal parasites or something...
Anyway, my die-off and secondary-porphyria reactions decreased to a point where the reactions were pretty much non-existent after about 12 months when CAP agents were used alone. I added Vitamin D3 in at that point and then found that I again had rather dramatic response to higher and higher doses of Vitamin D3. Since it elevates the production of our own broad spectrum antimicrobial peptides, and these antimicrobial peptides have been shown to have activity against a host of bacteria, fungi and viruses, I believe that in addition to Cpn, this helped me slay some additional pathogens. It could have just been the Cpn, of course, but all those tinea and seb derm infections completely cleared up and have never returned. I believe it is more likely that it helped get at additonal Cpn and other pathogens...
I tried adding Vitamin D3 with the antibiotics at first, but the secondary porphyria produced was too great for me personally. Over a period of 6 months, in fact, the resulting fatigue, depression and anxiety in particular became so intense and, frankly, frightening that I knew I could not continue. I then went back to just the CAP antibiotics, and all signs of secondary porphyria dropped away quickly, but in fact, all side-effects that might indicate I was making gains also went away again nearly completely as well. I felt almost nothing.
I wanted to continue to make good progresss, so I then decided to switch from the antibiotics to just high dose Vitamin D3 and NAC (figuring I could always go back on the antibiotics) and continued to feel die-off and secondary porphyria, although it was very manageable. At this time, I also talked with Dr Stratton to discuss this alternate protocol with him, discussed the actions Vitamin D3 likely has against intracellulari forms of Cpn, calculated the risks of potential backsliding, resolved that I could watch for any signs of this and if found would switch back to the antibiotics, and then proceded with the alternate protocol. Importantly, I continued to feel improvement over a period of months (not days or weeks!) while on it so I never felt the need to switch back to pure CAP.
I switched to the alternate protocol at a time when a few people who were on high dose Vitamin D3 + NAC (under one of the doctor's care actually and thank goodness for this wonderful, caring and brilliant doctor!) were sort of shunned on the CpnHelp board by some who were very CAP centric. There were also people who were extremely upset by this doc recommending the alternate protocol to start with for them. It was kind of a big mess, actually for a period of time. Unfortunately many of the people on this alternate protocol avoided posting directly on cpnhelp since they frankly felt so unwelcomed, but a few sent some personal messages in support of my trials, and most importantly they said they were getting better. I've found the same thing...
I've since improved to a point where I'm able to add the antibiotics back in, and although I've always been nervous that I might find that I've backslided and the antibiotics would produce heavy die-off and secondary porphyria again for me, this has not happened. I've actually found that they are not really doing anything additional for me again, but importantly, I can handle them (at least intermittently) with the high dose Vitamin D3 unlike before I went on the alternate protocol.
Based on my own experience, I would highly recommend what I've done to anyone who seems to plateau on CAP treatment. If you don't have problems with secondary porphyria, I personally would hedge my bets and add the high dose Vitamin D3 in with CAP as an addition / adjunct. If you do have problems with secondary porphyra from both CAP and Vitamin D3 as I did though, I would highly recommend thinking about Vitamin D3 + NAC as an alternate therapy, ramping up on the Vitamin D3 as quickly as you can (it did take me almost a year to be able to ramp to 10,000iu however), and then thinking about going on CAP to complete your protocol, if necessary.
The alternative therapy of high dose Vitamin D3 + NAC seems to have worked for me. Perhaps in the coming months or years, we will know for sure whether CAP is even required to complete this alternative therapy, which can be maintained for life quite easily though...
So, CAP, alternate CAP, additional agents. Who really cares? I feel better and now react less to anti-Chlamydial agents of all forms (including CAP). This is the important thing...
Importantly, over the last few months, we seemed to have moved to a the new openness here on CpnHelp towards alternate protocolsi. I believe this is due in no small part to the success found by Daisy and her husband (I hope he is still doing well!) and several other "newer" members who have altered the CAP protocol slightly to help battle Lyme Disease in addition to Cpn.
I'm personally glad to see this, and I think we should be open to alternative therapies for Cpn-related diseases if good, solid research supports these alternate therapies. But I also think we should also be careful to point out when an alternative therapy doesn't really treat all forms of Cpn, and might then likely result in failure...
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Treatment for Rosaceai
Thanks a lot Red for your
Thanks a lot Red for your posts here about D3. It really got my attention and I learned a lot. So started D3 myself and now I tell everyone about how good D3 is!
Glad you are feeling better, Maria
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Cpni since sep 2006. Autoimmune thyroid,hypofunction.levaxin,b12+folic acidi.All classic cpn,porphyriai and toxinsymtoms.Not able to work.Selftreating cpninfection with AllicinMax(garlic), NACi, high vitamin D3. Also treating with LIFE system and shaktimat
Red, did you have regular
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Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue-almost resolved, severe hormonal inbalance-resolved, right arm neuropathy-getting better. cpni, myco, EBVi, CMV. Capi began in 6/07. NACi 3000mg, minoi 100mg bidi, biaxin 500mg bidi. cytomel, tinii pulses
Hi Sharon,I actually have
Hi Sharon,
I actually have not had any Vit D3 test drawn to-date, mostly because there was no real clear testing guidelines (at least as I understood this). But I think this is a good idea, particularly now that we have a good guideline for blood level ranges:
http://www.cpnhelp.org/importance_of_vitamin_d_p#comment-44341
And even a recommended home test kit:
http://www.cpnhelp.org/importance_of_vitamin_d_p#comment-44421
I have just sent in my first testing sample using the above test kit. I hope to have the results back in a week or so. I'd ideally like to see my 25(OH)D levels around 70ng/mL...
I can tell you though, that personally, it was at the 6,000iu a day level that I started feeling real improvements. At the 8,000iu per day level, I felt even more, and at the 10,000iu per day level, I felt even more. My dad has found that after a year of 6,000iu of Vit D3, the skin cancer that he was getting frozen off by his dermatologist on a regular has pretty much some to a halt even though he spends tons of time still in the South Florida sun. His derm who was originally worried that 2,000iu he started taking 2 years ago was toxic has now said keep up the great work. He has now moved on to 8,000iu himself.
It will be interesting to see what my actual blood levels of 25(OH)D really are and will post them once they are back...
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Treatment for Rosaceai
Red,Thank you for your post
Red,
Thank you for your post confirming two of my physicians recommendationof VitD. In May my VitD blood serum was was 29 (below optimal level), by Nov, with just 2000iu daily my serum level is now 65. In November, one physican recommended increasing my dose to 4000iu. In a few months we'll retest.
I also appreciated learning more about how your rosaceai responded to the treatments, since mine too has improved. It was terribly exacerbated by a course of a potent anti-viral, completed June 2007.
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ME. HHV-6, EBVi, CpNi, EV. Valcyte (9mo.'07-'08). 4gr Valtrex (since Nov '08). 2400mg NACi + 200mg Doxyi 8/08; added 250mg Azith 12/08; 1st Flagyli pulse 2/09. 6K Vit D.
This is great news for you
This is great news for you Red.
It is an openess to new treatments that started this website & I hope we welcome this. My doctor has recommended my Lymes with a high does vitamin C incombination with many grams of sea salt. I will start ramping this up once I am settled in AZ by the end of the month. I will post the info about it for those with Lymes & see if I have the same good results the doc's son & wife have had. I have to review a huge article & get a web link for here as well.
Keep up the good work on slaying the beast. I take 8-10,000 D3 IU a day & 3 gms of NACi. In addition to the abxi so I am going in the right direction!
peace
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CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<
Hi Ruth, I'm looking
Hi Ruth,
I'm looking forward to reading about your salt + C experience. I've read about that protocol and found it interesting.
Will you be starting a separate blog for it?
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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Don't believe everything you think!Supplementsi, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons
Red, What are we calling
Red,
What are we calling "high dose" for D these days?
It seems to me that when I first talked with Stratton and read thru the supplement recommendations on this site, 2000 - 4000 ius of D3 are recommended along with CAPi even though these amounts by mainstream would be considered "high dose."
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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Don't believe everything you think!Supplementsi, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons
It's a good question,
It's a good question, Reenie. The old high dose is certainly not the new high dose!
I have been taking 10,000iu a day for a year now, at least 8000iu a day for another 2-3 months, 6,000iu for another 3-4 months, and at least 4,000iu for over 2 years...
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Treatment for Rosaceai
What I like about the
What I like about the topics explored and the primary topic for this group are for the most part head waters for the mainstream, the feeder brooks and tributaries that run clear and cold before the larger current and often poluted mainstream rivers of imformation. Standardmedical thinking and the peramemter used by first line and older schooled practitioners are unfortunately manytimes 10 or more years behind the times in the conservative guidelines that they adopt. I have watched certain segments of the patientcare system develop over a periodof forty years. And my observations started at a time when I was young and vigorous. I have always looked for the cutting edge of how to stay vigorous and applied much of the cutting edge information to myself over time. I am very glad that I did, even butter proved to be better than margarine (plastic butter).
One can take the very concervative road and wait until all the reasearch is done but you may be well to old and disabled to appreciate whatever the sanctioned changes become in another 10 - 20 years. Yes I am glad that I took Vit D even the wrong type 40 years ago was better than not any at all. Now we have options and with options the need for self education or strict reliance on the norms. There is and always will be the old and the new of most therapeutics (except for ancient systems that are a whole other millieu).
I am glad that such bodies of research can be reached via the internet, because I for one would not have had the energy and ability to seek it out myself. Yes we all need to become well informedconsumers in the mist of much controversy and changing application perameters.
Thanks, WindyKnoll. I too
Thanks, WindyKnoll. I too am so glad this research can be reached now via internet. And I believe that had all the info on Vit D3 been available earlier, many, many people lost to horrible diseasesi like cancer, heart diseasei, etc might still be alive. If only I started taking Vit D3 35 years ago when my symptoms really started to take off...
Are you currently treating for Cpni? If so, and if you wouldn't mind, for what illness(es), and with what protocol?
Thanks again, and take care...
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Treatment for Rosaceai
Hi Sharon, there is a
Hi Sharon, there is a self test kit available through this link;
I understand it is done by finger stick on blotter type card. So not even a blood draw needed.
I am waiting for lab requesititions so that I can test after several months on the 10,000IU dosage of VitD3.
It might be interesting to see if the 3000IU is an adaquate dosage for you.
Nice to see your post. Louise
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6-07WheldonCAP CFS20+yr
(11-29-07 started Cholestyramine HS PRNi x 7d for porphyrin+endotoxinsi removal)
Check out Louise's Blog at; http://www.cpnhelp.org/blog/louise for the details of my treatment adventure!
What brand of D3 do all of
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CAPi since 11/06 for Cpni, Lyme, Bartonella, Babesia, Myco P, CMV, HHV-6 infectionsi. Rifampin 600mg daily, Zithromax 500mg daily. NACi 2250mg daily. All other supplementsi. Now Bicillin LA 2.4 mil injection weekly.
I take NOW brand, from
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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 had been taking KAL Brand
I had been taking KAL Brand it is an older manufacture and produces some harder to find supplementsi at decent prices.
I switched to Carlson's at the suggestion of my Inergrative Practitioner, said that it was cheaply priced and good quality. Also this is what I was taking and when I could not get my level up as desired by my doctor. So since I could get Carlson in the 2000IU D3 dosage locally I decided to change.
I do use some NOW products, I pick and choose and read the labels and whether it is offered as a tablet or capsule or softgel. Some tabets sit hard on my stomach so I prefer capsules or soft gels for my application.
I'd like to hear about brands that others feel are reliable in their dosages. Generally it is not difficult to take multiple small VitD3 soft gels. Cost comparisons from strength to strength is a good thing to do. We take many supplementsi and they all add up significantly over time. Louise
___________________________________________________________
6-07WheldonCAP CFS20+yr
(11-29-07 started Cholestyramine HS PRNi x 7d for porphyrin+endotoxinsi removal)
Check out Louise's Blog at; http://www.cpnhelp.org/blog/louise for the details of my treatment adventure!
Hi Chris, I and almost
Hi Chris,
I and almost everyone I've recommended Vit D3 to, just use the Vitacost, NSI brand since it so cheap, and they've just reduced the price by another $2 (how great is that?):
http://www.vitacost.com/NSI-Vitamin-D3-2-000-IU-300-Capsules
I assume based on my reactions (or lack of reactions now) that this brand is doing the trick, but I'll know for sure once my test results come back...
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Treatment for Rosaceai
So wonderful to have so
So wonderful to have so many options to consider, thanks Red, seems we are getting a lot of data and information located together.
Chris, thanks for asking the question. Louise
___________________________________________________________
6-07WheldonCAP CFS20+yr
(11-29-07 started Cholestyramine HS PRNi x 7d for porphyrin+endotoxinsi removal)
Check out Louise's Blog at; http://www.cpnhelp.org/blog/louise for the details of my treatment adventure!
I have really been
I have really been pondering the information you presented in this post as it relates to my daughters situation/infection. I think one of the things that triggered my daughter's current decent to chronic illness was when she began taking Vitamin Di 2000IU at the beginning of September 2008. I think the pathogens in her were brewing and causing her trouble ever since the mono infection in spring 2007. It it took Vitamin D (and the ensuing die off it caused) to get things to a point that we sought medical help again for why she was feeling so awful.
As I have stated in other posts, my daughter does seem to have a great deal of trouble with secondary porphyriai. I think the Cpni infection has been causing porphyria for her long before she began treatment. I think when she began the Vitamin D supplementsi, she unknowingly triggered even more porphyria.
Once I realized Vitamin D was a problem for her I reduced her daily Vitamin D dose down to 400 IU for several weeks. I have slowly been adding 400 IU at a time to her daily supplementsi. Yesterday, I raised it to 1600IU. Well my daugher has been feeling alright the last few days (not bad, not good) so I was suprised when she sent me a text message this morning while I was at work telling me she felt horrible. I was surprised but then remembered that I had raised her Vitamin D again. I can't help think there is a connection.
The antibioticsi don't seem to give her as much trouble as NACi and Vitamin D. We have added the Doxyi 200mg and Azithromycin without her seeming to notice but increasing Vitamin D and NAC always seem to cause a change in how she feels. So Red your statment "Since it elevates the production of our own broad spectrum antimicrobial peptides, and these antimicrobial peptides have been shown to have activity against a host of bacteria, fungi and viruses, I believe that in addition to Cpn, this helped me slay some additional pathogens." really hit home because it makes me think she is fighting more than CPn -- maybe chronic epstein bar.
So where do we go from here....well I think for now we will continue on the CAPi. She sees the doctor again next week and we will discuss when to begin flagyli. I will definitely cut back on her Vitamin D again because it seems she also cannot handle high doses of Vitamin D at the same time as CAP. It makes sense though to pursue high doses of Vitamin D once she has plateaued on CAP and her secondary porphyria is no longer the issue it is currently. I really appreciate the information you have shared here.
Maria
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Mother of a teenage daughter with cpni infection. Symptons include migraine, muscle aches, chronic fatigue and brain fog. Currently taking 1800mg of NACi, 200mg doxycycline, 250mg azithromycin MWF, pulsing flagyli, armour 60mg, 100mg trazodone, iron supplem
Maria, Your post is a
Maria,
Your post is a really great explanation on what is most likely happening when someone adds more D into the mix. It's one of those posts that I'll be referring folks to for an explanation. Thanks for sharing.
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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Don't believe everything you think!Supplementsi, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons
We get our D3 at the
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In pursuit of ABX
Don't Allow What You Know To Get In The Way Of What Might Be
Ken, Kim's Vit D Rx from
Ken, Kim's Vit D Rx from Vanderbilt made me sit up and take notice when you reported on that part of her treatment plan. I am sure that you have found all the more recent articles that are being added to the website. I found your comment about a vitD board quite humorous.
You have not blogged about the video shoots on Kim's Video journal recently. Perhaps after the up comming MRI and visit you might be willing to share an update with us here. Your posts are always entertaining as well as informative! Louise
___________________________________________________________
6-07WheldonCAP CFS20+yr
(11-29-07 started Cholestyramine HS PRNi x 7d for porphyrin+endotoxinsi removal)
Check out Louise's Blog at; http://www.cpnhelp.org/blog/louise for the details of my treatment adventure!
Louise,You tellin' me this
Louise,
You tellin' me this is a circle? This thing I don't understand was started by me?
We never did use the D2, but I do remember a lot of posting about D2 and D3, OMG, that was a while ago. I need to find new articles. This D thing has taken on a life of it's own. How did you get your sig to 4 lines? Wow! Kim had to shorten hers to make it fit on 2 lines. I just have the impression that there must have been a major journal article about vitamin Di.
Walks are going well. Kim is taking them seriously like a track meet sorta thing. She stretches and twists to get ready. I post all this at TIMS and I try to not get in the way of Kim's telling her story here. She's settled in at about 5 seconds +/-.
I've read that some folks are shooting for 100 as a level for D, yes? no? So, right now I'm reading a huge paper about veins and MS (Thanks Marie) that's so far mostly history and I just can't keep up and then I start a thread on a completely new board to try and share Kim's experience and I get bogged down in a discussion about epilepsy drugs that suck the vitamin D out of you ....... Maybe I take all this too seriously. I really do care.
Ken
___________________________________________________________
In pursuit of ABX
Don't Allow What You Know To Get In The Way Of What Might Be
Ken, Answer to first set of
Ken, Answer to first set of questions. Kind of yes and no. No you did not use the D2 version but the level recommended by her MD was enough for me to start looking at the topic. Seems it was a good while ago and I thank your post for letting me know that Kim's neuroi was taking VitD seriously, I guess that I found that helpful information and increased my interest for more knowledge. Also Red was talking and sharing a few articles and papers here and there. The topic just sort of drifted in as topics do here yet a topic with supporting information, that is always a key motivator for me to consider options.
If you post in your personal blog the question of the signature I will try and answer there for you, not to clutter this thread. Again I would like to chat as about the video recordings a bit more and will if you blog so we can have our conversation there.
I am under treatment and yes for me personally the target is 100 doctors instruction. I have been working to get levels up for a year now and have tested in a series. Will be blogging about my next result soon, have been on D3 10,000/day since end of October and then will share the resulting MD conversation. Testing can now be done by self through the VitD council site. Read all these current Vit D3 threads, they should bring you up to speed. Interesting about the Epilepsy drugs and VitD3 depletion. It was years before it was known that taking mineral oil for a laxative or even using is frequently on the skin ( this include vasoline) depletes fat soluable vitaminsi of which Vit D is one!
Hope you are thrilled with all this extra reading now available. Louise
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6-07WheldonCAP CFS20+yr
(11-29-07 started Cholestyramine HS PRNi x 7d for porphyrin+endotoxinsi removal)
Check out Louise's Blog at; http://www.cpnhelp.org/blog/louise for the details of my treatment adventure!
Maria- what you report with
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CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3, 12mg Iodoral
This is a great post, thank
This is a great post, thank you Red for sharing this.
I wonder what type of vitamin D3 people are using. Seems most on this thread have mentioned the OIL caps (fish and soybean oil).
I've read elsewhere that some folks are using Twinlabs Vitamin D3 - Allergy Caps (designed specially for fish and fish oil allergic individuals). This is the alternative I've seen to using the oils. This guy mentioned using the allergy D3 caps instead of the oilwith better success (he also has also some good information on Vitamin D as does Ken Lassesen at lassesen.com)
I wonder if some of the benefit is coming from the EPA/DHA from the fish oil?
BH
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Doxyi 100mgx2, Azithromycin 250mg MWF, Probiotics: PB8, JarrowDophilus. CFSi since 2003. Last 5+ years lots of the usual research (Depression, Adrenal Fatigue, HPA, Mercury, Candida, Thyroid, etc.). iherb.com $5 coupon code: HAW103
Louise,It's a nice feeling
Louise,
It's a nice feeling to have been helpful. Thank you. I don't blog here because Kim has a blog here and I don't want to be in the way of her telling her story. I think this also falls under "The Caregiver Rule"; don't do stuff that undermines independence. So I have a thread, which is effectively a blog at TIMS. I'll have a follow up conversation with Dr. Sriram about Kim's D levels. I have a lot of catching up to do.
Ken
___________________________________________________________
In pursuit of ABX
Don't Allow What You Know To Get In The Way Of What Might Be
Jim, thanks for sharing
Jim, thanks for sharing about your experience with Vitamin Di as it relates to your daughter. It certainly validates what we have experienced with Vitamin D use.
It is fascinating to me how a supplement that I would have not thought a moment about six months ago could have this type of impact on my daughter. She was in such a heap yesterday. I know she spent the whole day on the couch. I don't think she could even read she felt so bad. She got about 12 hours of sleep last night and seems much better today -- thankfully. She is up and about and willing to tackle her school work. So lesson learned, we will go very slooooooooowly with the Vitamin D.
Maria
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Mother of a teenage daughter with cpni infection. Symptons include migraine, muscle aches, chronic fatigue and brain fog. Currently taking 1800mg of NACi, 200mg doxycycline, 250mg azithromycin MWF, pulsing flagyli, armour 60mg, 100mg trazodone, iron supplem
Maria here is where things
Maria here is where things can get tricky. Dear Daughter is now about 2 months into the progression of the CAPi if I have my dates anywhere near correct. If this is true, those of us who have been watching the site for well as long as I have anyway, 18 months have seen that folks who have been on the first two abxi and going along doing OK all of a sudden about 8 - 12 wk mark take a sudden turn towards feeling "horrible". Not to deminish the thought or the possibility of the effect of the increase of symptom being contributed to by the increase in D there is also this other aspect of time spent on doxyi and azythro combo even if D dosage had not been changed or not up to the recommended starting dose of the suggested supplementsi levels.
So also think about modest amounts of Glucose tablets at the time of complete exhaustion at this point in addition to the moppers. Thisinitial phase of treatment can be a difficult period during CAP for those with high bacterial loads. My first six months were harder than before I had started treatment and I did not know what I know now (not uncommon). The Tinii or the Flagyli can wait a bit longer if she is still so fragile from my perspective. Incremental changes in everything is prudent or it was for me in early treatment phase.
Louise
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6-07WheldonCAP CFS20+yr
(11-29-07 started Cholestyramine HS PRNi x 7d for porphyrin+endotoxinsi removal)
Check out Louise's Blog at; http://www.cpnhelp.org/blog/louise for the details of my treatment adventure!
Louise, my daughter takes
Louise, my daughter takes glucose before meals. Do you use glucose to give youself an energy boost in addition to fight porphyriai? I was thinking of getting some calcium pyruvate to see if that would give her an energy boost especially in the late afternoons.
Yes, I also wondered if her down turn yesterday was just part of treatment. She is going to have bad days at this stage in the game no matter what so I will have to expect that. It is nice to see her today much more like herself. She was laughing with and teasing her younger sister this afternoon which is always a sign that she is feeling okay. Yesterday, her mood was foul and she had absolutely no interest in socializing with any of us. It is reassuring that for whatever reason yesterdays "horribleness" did not last too long. It is certainly nice to hear her laugh.
Maria
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Mother of a teenage daughter with cpni infection. Symptons include migraine, muscle aches, chronic fatigue and brain fog. Currently taking 1800mg of NACi, 200mg doxycycline, 250mg azithromycin MWF, pulsing flagyli, armour 60mg, 100mg trazodone, iron supplem
Personally I did and it
Personally I did and it would bring me improved (OK not perfect) but better not completely exhausted. So I have heard have used it before meals because of nausea is that the case with your daughter? Why before meals for her? I would have taken again two or three glucose tablets, which equals 5gms each or about 10 to 15 gms in an energy slump which what I may think could be what she was talking about when "feeling awful"? For me doxyi caused lots of gastric distress is she OK with doxy from the ingestion prespective? That is wonderful and the way it is for lots of people just not me early on. I worked around how to get it past my stomach once past it no problems with abdomenal symptoms. I might say I would be towards the extreme in this reaction just for those reading that have concerns. I always take it in the middle of a full meal, breakfast and supper and have little problem with that much food which includes fats and protein foods. It is rather variable and energy (therefore humor in my situation)could disappear amazingly quickly, like night and day.
So she sounds like she is riding the wave of the ups and downs and that is really what the early days are about for some of us.
Glad to hear she is better today. Re -read the Syptoms and Reactions page again, print it out for yourself and do a check list from time to time when things come up. Porphoria, low blood sugar both at time respond a modest amount of glucose.
Louise
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6-07WheldonCAP CFS20+yr
(11-29-07 started Cholestyramine HS PRNi x 7d for porphyrin+endotoxinsi removal)
Check out Louise's Blog at; http://www.cpnhelp.org/blog/louise for the details of my treatment adventure!
Had a conversation with Dr.
Had a conversation with Dr. Stratton and mentioned the idea of using D as an alternative. Since D's supposed action against Cpni is to empower the immunei system to kill it (via catelicidans), it will depend on whether one's immune cells are infected by Cpn as to how effective this empowerment will be.
Reflecting on this I thought that it may be really crucial here that Red first treated via the CAPi, likely clearing his immune system of infection along with his skin, etc., and this may be why the high dose D could be effective in clearing the rest (assuming that is the case). It's really important that we don't portray this as an alternative on the front end of treatment because it may not be a workable intervention for folks such as myself, for example, who have dysfunctional and infected immune cells.
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CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3, 12mg Iodoral