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JerryD
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Posted: Thu Aug 12th, 2004 08:19 |
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Hospitalized day after polio vaccine as child (vaccine was pulled from market in ‘62 - contaminates). Chronic respiratory infections followed. Hospital again in college (’75)…trigger event = was part of cluster outbreak in ‘83, mono & non-specific hepatitis. CFS since.
25 D = 18 1,25 D = 62
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It took 2 months to find a doc willing to try MP …might have been a good thing as it gave me a chance to go full D avoidance which resulted in an easy transition to benicar.
After 5 days on vit D avoidance, started to develop deep dry, itchy cough and mild tight chest. Had two episodes of fluttering heart beat. This was back when Sarcinfo was only web site, I remember scolding myself “you lightweight, all you have to do is start reading about this stuff and you start showing symptoms!!” It was about a week later that I found the links below which showed me I may have had cutaneous sarc for the past 11 years…our old doc had told me once he could give my another dx if I ever needed to file for disability, but that it was a condition ‘where the treatment is worse than the disease’…to my mind that statement pretty much sums up mid 90’s ‘state of the art’ sarc treatment protocol.
July 20, 2004 Start of benicar:
Just the typical minor problems the first 4 days. After that noticed mild improvement in brain fog and energy.
I have been on 40mg every 6 hours since start. Pre benicar my resting pulse was mid/low 50’s (I was world top 50 distance swimmer back in mid 70‘s), it worked up to low 70’s by day 5 and held steady until I started mino. Started to enjoy some restorative sleep…with CFS you could wake me up at 3am or 9am I would not feel any different. Also felt normal hunger pangs for first time since 1993 (inflammation of immune system associated with a lot of ‘autonomic’ dysregulation…no hunger and constipation are some for me). Constipation also resolved quickly with start of benicar (how am I going to get all my reading done??).
I think hunger is also strong because of higher metabolism / pulse rate as body works to create blockade.
Start of Mino:
After a week of benicar only, took first batch of mino (12.5 mg.). Herx peaked 40 hours later, pulse had slowed down to mid 60’s. Herx symptoms fairly typical, with some surprises (IBS type reaction, face ‘acne’). I have had this for years:
http://www.ghorayeb.com/CutaneousSarcoidosisNose.html
As herx waned, pulse moved back up to low 70’s….hmmm, could I be so lucky as to get a quantifiable measure of herx intensity and duration?? Time will tell…
Tried second batch of 12.5 mg mino 96 hours after first. Herx peaked 55 hours later, pulse had slowed down to low 60’s. Herx only slightly more severe in ‘intensity’…no symptoms that other folks have not reported.
5 days after I took second batch , I decided to try 25mg of Mino. Herx symptoms seemed to peak after 4 days, but then came back after giving me about a 12 hour break. I am watching pulse more closely this time:
At dosing………….72
4 hours post……….69
12 hours post………68
24 hours post………65
48 hours post………67
72 hours post………64
92 hours post………57
120 hours post…….53
132 hours post…….58
140 hours post ……55
That brings me up to date. (Pulse taken with BP cuff. BP is not associated with symptoms, was 105/73 pre-benicar, and now usually 80/55).
So far the best way to describe herx is “a return to my pre-benicar state, with a few new symptoms (IBS, pimple on top of head) tossed in to let me know a change is taking place“. The cough that showed up on the avoid D stage is not quite as bad, have not had any heart ‘flutters’.
It is starting to look like I am another CFS person who’s herx recovery from mino is very drawn out.
I know we need to work our way though phase 1 before other bacteria can move in to areas the mino cleared out.
- Has this ‘drawn out’ herx been seen before with any of the ‘nuero-sarcodians’ (didn’t Cap Kirk fight with your leader once??).
- It has taken nearly a week for me to feel the beginning of recovery from 25mg mino…should I try the very small doses (6 mg) and try to get closer to 48 hour cycle??
- Penny stopped mino…seems to be making progress on benicar / D avoidance alone. ..that would be another option.
No rush on answer, as it looks like it may be a few more days to recover back to ‘no inflammation’ zone.
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Yuppie flu -> CFS -> YouNameIt
Some symptoms since '60 (vaccine reaction)
1,25D = 62........25D = 18
MP since July 27, 2004
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Dr Trevor Marshall
Foundation Staff
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Posted: Thu Aug 12th, 2004 11:16 |
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Jerry,
Remember that it is your immune system that is killing the bugs. The MP helps your immune system do that.
Sometimes you have patches when you expose the bacteria to the immune system and it just keep on killing them, even if you stop all medication.
As each part of your body herxes, in turn, you will understand that that it is a wondrous journey you have set out upon, to retrace a significant part of your life, and there will be many surprises along the way. You will need to gradually incrase the abx dosage, but some weeks you will need to cut it back. It all depends on what patches of bacterial infection are exposed as the healing process proceeds.
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JerryD
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Posted: Mon Aug 30th, 2004 05:37 |
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It seems my experience with Benicar is running in slow motion...so far it has taken three and a half weeks and still no recovery from a single 25 mg of mino. And I am just starting to get the 'super fatigue' that most
folks report on their first week with it. The initial benefits of a little more restorative sleep and clearer head have also vanished into the malaise of post mino blues.
There are some slight differences in symptoms from day to day that lead me to believe I am herxing from the
benicar alone. Up until this year, I only had been through just a few courses of abx in my life. And this
year was only a 4 week trial of medium dose Doxy (which I stopped the day after I stumbled upon
sarcinfo.com) ...so maybe I have a lot of bugs who are sensitive/vulnerable to both abx and my now 'closer to normal' immune system.
I think my own personal MP might end up consisting of a few more 'phases' than the protocol as written. If graduation from one phase is dependent upon resolution of the herx at the max dose for that period...then I have been rushing things as I had significant herx from just the "D avoidance diet/sun avoidance/NOIR glasses" phase. I ended up with a lot of the dry, deep cough and a few minor heart problems before I ever started on Benicar.
And once on benicar, I have continued to herx, although the picture is confused because I started the mino too soon. It has been 3+ weeks since a 25mg dose of mino, and I still have not recovered the few good 'side effects' I was getting while on the benicar alone. My conclusion is I am herxing from the benicar.
As for quercetin, I took 500 mg 3 days ago, and 45 minutes later had the first migraine of my life...sweating, nausea, the whole works. I very rarely get any kind of headache at all - probably have had fewer than a dozen in my whole life (the wife says "There’s nothing in there to hurt"). The last remnants of that headache went away early this afternoon.
So, I assume that the quercetin makes me herx also...
I am sticking with benicar and D avoidance strategy for now and am going to see how it plays out.
Herxing for CFS folks is going to be a confusing issue because of the neural involvement. One of the more interesting studies done on CFS folks was a measure of pain perception. A steel ball bearing was dropped on the base of the subjects thumbnail, with the height of the drop being raised each test until the subject decided that the result had moved from 'uncomfortable' to 'painful'. The end result was that the 'pain point' for the healthy subjects was twice the height as for the CFS folks. Twice the height is four times the force...a general guideline that may be inferred from this study is that CFS folks are 2 to 4 times as 'pain sensitive' as 'normals' are.
So far, after more than a month on benicar, I still seem to have that sensitivity...and still have all the rest of the CFS symptoms, with exception of constipation. I have been sick a long time (before the days of yuppie flu), and have seen all the proposed illness theories come and go...but Dr. M's is the first one to propose a disease model which can (and has) been verified by a simple blood test. So even if it looks like I'm 'stuck in the water' I am not about to abandon this ship. 
____________________
Yuppie flu -> CFS -> YouNameIt
Some symptoms since '60 (vaccine reaction)
1,25D = 62........25D = 18
MP since July 27, 2004
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GeorgeinRollaMO
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Posted: Mon Aug 30th, 2004 16:38 |
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JerryD,
The ladies encourage one another! So, I want to give you encouragement from one of the male crewmembers. Like you, I see the MP as as one of the Biggest Things that has hit medicine in a long time. Keep in there! I am watching your results with eagerness! I, too, have a high 125D... 57.
My reason for needing the MP is different from yours it seems. But the mechanism is the same, I think, and so is the treatment. However, I have always thought since getting borreliosis that CFS (Constant Fatigue Syndrome) is really borreliosis that was not dx correctly by docs. Maybe, I am wrong!
I am starting the MP on day after tomorrow, 9-1-04. Had to wait to be off abx for a week, after some negotiations with my LLMD.
Good luck to you! George
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Borreliosis:7/14/04--125D=57,25D=61. Ben 9/1/04. Mino 10/5/04. 4/13/05--125D=58,25D=43. 8/17/05--125D=52,25D=36. April 06=125D=38,25D=29. 8/29/06--125D=37,25D=29. June 07 25D=23. Oct31'07,25D=19.
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paulscha
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Posted: Mon Aug 30th, 2004 17:35 |
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Hiya JerryD,
The little touches of humor in your posts gave me a big grin to start my day with. Was trying to focus on the medical side of your excellent, very thorough reports, but kept coming back to Captain Kirk vs. the Neuro-Sarcoidians. Imagining Bones trying to treat one of the wounded aliens - 'Dammit, Jim, I'm a doctor, not a magician!'
It sounds to me like you had a bit of herxing on just the regimen of sunlight and D avoidance. That is my experience as well. A month of vampire-like strictness about shunning the sun, and my body began showing signs of fighting infection - swollen, painful lymph nodes, an added layer of fatigue and thickheadedness, much greater need for bed-rest. My 'good days' got better, my 'bad days' got worse. Both cognitive symptoms and mood grew less predictable, subject to rapid changes.
I'm hopeful that during this period my 25,D and 1,25-D levels may have been coming down a bit, putting me in better shape to start the Benicar.
This is as good a place as any to confess/explain that apart from my vampish ways I am not yet on the MP. I was invited to join the board staff here because I have now been force-feeding the scientific papers to my brain long enough that I can regurgitate chunks of them in intelligible english.
Having made that disclaimer, it does sound to me like you're rushing things a bit with the mino dosing, might be worth trying to find a lower dose your body can tolerate at more regular intervals. Pulsing is good, but 3 weeks stretches the definition of 'pulse' a bit much. Some people are dividing their mino doses and mixing them in applesauce - oooh, yummy! If you haven't already, you might want to try that.
It's good to have you here, JerryD.
Best wishes,
Paul
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Paula Carnes
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Posted: Wed Sep 1st, 2004 05:26 |
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George, I also believe that most cfs is lyme. Mine is. CFS for 9 years and found out a year and a half ago it was Lyme all along, and my husband and one son are also positive although never as sick as I have been.
Paula
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JerryD
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Posted: Wed Sep 1st, 2004 19:12 |
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Thanks for the note, Paul...
I think that as time goes on, it may be that for most CFS folks taking one or two months of 'D avoidance' before starting benicar will help to reduce adjustment problems. I had no major problems with starting benicar, but it had taken me a few months to find a doc to prescribe it...so I had been on the 'D avoidance' phase for 7 or 8 weeks before starting the benicar.
I am staying on only the benicar for now, and will trial a smaller amount of quercetin soon. I am also doing a small amount of stretching and activity. There is a fine line between getting the blood flowing enough to help 'clear the herx' and doing so much that it causes more stress.
As for the mino, Penny had said there is some evidence that small doses might do more harm than good. Of course, she did not say over what time frame...or any other details. Those concerns will be worked out with time and experience. That's what we CFS 'guinea pigs' are here for. Nobody ever said being a lab rat would be easy...
Jerry
____________________
Yuppie flu -> CFS -> YouNameIt
Some symptoms since '60 (vaccine reaction)
1,25D = 62........25D = 18
MP since July 27, 2004
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Reenie
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Posted: Wed Sep 1st, 2004 22:06 |
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Jerry says, "I had been on the 'D avoidance' phase for 7 or 8 weeks before starting the benicar."
I think this may be helpful. I avoided the sun and D for a month prior and had no probs starting Benicar either. I'm still waiting for my repeated D tests to see how much I actually lowered my levels by avoiding D.
Jerry says, "As for the mino, Penny had said there is some evidence that small doses might do more harm than good. Of course, she did not say over what time frame...or any other details."
Dr M addresses using a single abx therapy and says, "If it stretches beyond 6 months then we want to move people on, to deal with any possibility of additional antibiotic-resistant species forming during the minocycline monotherapy."
I think this would be the concern when starting with a really low dose... that you may need to go on longer than the six months, however, by adding a second abx along with the mino, I think this helps ameliorate this potential prob.
Meg says, "Those people who can only take tiny amount of mino should be trying quercetin to see if that enables them to take more mino. If you get beyond six months and are concerned, we can discuss strategies then. Perhaps, Trevor would agree to starting Zithromax with smaller amounts of mino. That's the beauty of this protocol. The antibiotics can be taylored to fit the situation."
http://www.marshallprotocol.com/forum11/255.html
With all of the reactions of PWCs on starting doses as low as 12.5mg, I think I'll "take my chances" on starting with 3mg. This seems to be a "safe" number for some to start at. 
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Amy
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Posted: Fri Sep 3rd, 2004 02:45 |
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I am also doing a small amount of stretching and activity. There is a fine line between getting the blood flowing enough to help 'clear the herx' and doing so much that it causes more stress.
Jerry
I agree with Jerry about the fine line regarding activity above. It's those nasty little toxins that make us feel so bad. The MP would benefit if someone could find a way for the toxins to be effectively flushed out of our systems. The water soluble can be taken care of with plenty of water, but the fat soluble toxins are so difficult. I know a few Lymies that can tolerate exercise and do much better with their Herxes. I also know what it's like to lay in bed with Herx pain and fatigue so great it's very difficult to get out of bed for anything. But, I've found it's best to push one's self a little past what you think you can do.
Amy
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Lyme/CFS/FMS/Endocrine disorders/12 years
Doctor did NOT run pre-MP tests. Benicar 120mg.
Started the MP on June 21, '04
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JerryD
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Posted: Mon Sep 6th, 2004 01:11 |
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Amy and 'gang'...
Just a quick note to say I have had success with trying a smaller dose of quercetin (125 mg). Cuts the overwhelming fatigue down to a managable level, also helps with the aches and pains.
I forgot to post last time that my BP ranges from 83 +/- 7 over 50 +/- 6...pulse never did recover back to the low 70's level back when I started the Benicar and was feeling better, but it is a little higher than normal in the low 60's.
Will be trying the mino again soon, at the low dose this time...
____________________
Yuppie flu -> CFS -> YouNameIt
Some symptoms since '60 (vaccine reaction)
1,25D = 62........25D = 18
MP since July 27, 2004
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Reenie
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Posted: Mon Sep 6th, 2004 02:04 |
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"Just a quick note to say I have had success with trying a smaller dose of quercetin (125 mg). Cuts the overwhelming fatigue down to a managable level, also helps with the aches and pains."
Jerry,
When did you start the Q and how often do you take this dose? Are you ramping up the dose or just keeping it the same?
I had a horrible experience, like you, on a 500mg cap this past week and am trying to build up the courage to try 1/3 of that amt.
BTW, have you tried to lengthen or shorten you dosing of Benicar to see if this would alleviate your Benicar herx? I seemed to herx on q4h, but am doing better on q6h. Maybe adjusting your dose, up or down, will clarify things for you... just a thought.
TIA! Last edited on Mon Sep 6th, 2004 03:21 by Reenie
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JerryD
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Posted: Sat Sep 11th, 2004 04:44 |
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Reenie:
Opps!! Wonder how I missed your message!??
I just experimented with the big Q. After the first bad reaction, I lowered the dose to about 1/3rd of a 500mg pill, and it worked fine. I just tested that twice, so I have it in reserve in case I need it. Sticking with the basic protocol for now. Have been taking 5mg of brand mino, the pellets make it easier to portion. 21 pellets = 5 mg....420 in a capsule. I twist the small end off the capsule, and just shake out however many pellets I want.
I had tried adjusting the benicar, but now sticking with one every 6 hours. Overall, been doing better this past week. The 5 mg mino every 48 hours has been working, this is the end of my first week back on it. Had some interesting herx's, like the 'deep muscle' one some others have had. Also a few other areas that let me know the mino is finding some bad guys, lol.
The 'mini-mino-marauders' are doing their thing!!
Sorry again for my tardiness, Jerry
____________________
Yuppie flu -> CFS -> YouNameIt
Some symptoms since '60 (vaccine reaction)
1,25D = 62........25D = 18
MP since July 27, 2004
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JerryD
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Posted: Thu Oct 7th, 2004 02:45 |
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Now on the full MP with Q. Every 6 hours the benicar and Q. And after about 5 weeks of pulsed mino, I have worked up to the dose of 1/3 a pill...33mg every other day.
Still suffer from the cluster of CFS symptoms that hit me way back when I had my 'trigger event'. About twice a week those CFS symptoms go away, and I hit a window of feeling real good that lasts for a few hours - better than nothing, and another signal progress is being made. I have not had any cardiac herx symptoms for 3 weeks now, but each time I have raised the dose of mino I get a mild headache for a few days. Also just this am, had a pretty severe lung cough...never had any lung symptoms before starting on the Vit D avoidance diet.
Interesting how many different areas come forward and take their turn playing 'lead symptom' for a few hours.
It's like some perverse pleomorphic jazz band concert, where each area gets it's own solo to perform. The past week, the loudest solo has been the digestive tract...I won't burden you with the details, suffice it to say if you've seen Mt. St. Helens recently...
The rest of the symptoms are just the usual fatigue waves, crawling mystery itchies, watery eyes, ...
Jerry
PS...Heres one for you mystery fans... There is a 'cluster of symptoms' that I had a few weeks ago that caused me to take an extra day off from the mino...and these symptoms resolved quickly (8 hours). I don't want to describe them now, as these symptoms are only found in the medical history of the CFS/Lyme patients. It was remarkable to me when I did a full search of the Sarc website that this 'cluster' was not mentioned even once in any sarc patient's posts...yet I would venture 3/4's or more of CFS/Lyme folks mention these in their medical history.
I don't want to post what they are, as I am looking to see if any other CFS/Lyme MP patients mention any of them. They are nothing to worry about, just a curiosity now because of their total absence in Sarc patient's experiences.
____________________
Yuppie flu -> CFS -> YouNameIt
Some symptoms since '60 (vaccine reaction)
1,25D = 62........25D = 18
MP since July 27, 2004
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Aussie Barb
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Posted: Fri Oct 22nd, 2004 23:52 |
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| Jerry how are you going? have you sorted out your mystery? Barb....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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JerryD
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Posted: Sat Oct 23rd, 2004 04:47 |
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Hi A-Barb...
Right now I'm scratching my head wondering...
....did I take my Benicar and Q two hours ago like I was supposed to, but forgot to write it down in my log?....
....or, maybe I forgot to do both?...
....or, maybe I am just remembering my reminder to myself not to forget to take my meds?...
....or, maybe???????...aaaaagggggggghhhhhhhh....
So, I'll just take a half a benicar for now...and resume 'regularly scheduled programming' in 4 hours...
I will give full update on progress tomorrow, thanks for asking. Ah, the wonders of brain fog... Well, we know how to handle that-->> just a couple toots on the horn and full steam ahead...Jerry
____________________
Yuppie flu -> CFS -> YouNameIt
Some symptoms since '60 (vaccine reaction)
1,25D = 62........25D = 18
MP since July 27, 2004
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Aussie Barb
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Posted: Sat Oct 23rd, 2004 05:42 |
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| Jerry!!!!!! oh how I know all about that!! ...... toot toot...... Barb...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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JerryD
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Posted: Mon Oct 25th, 2004 20:36 |
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Its been 3 months since starting the benicar, and with the exception of taking 3 weeks to recover from the first dose of mino, it is going as expected.
Now ending week 8 on this second mino trial, will be starting 100 mg mino next week (if no surprising herx before then). There is only one herx symptom that has occured with any predictability; each time I increase the mino dosage, about 24 hours later I get a bout of 'IBS'. The last increase from 50 mg to 75 mg produced this reaction, but this time it was less severe in both intensity and duration. Fatigue is still number one complaint, also noticed more frequent mild headaches. Good news is no signs of any dangerous herx symptoms, just cycling through the 'run of the mill' complaint list.
The 'cluster of symptoms' mystery that I mentioned 3 weeks ago have not re-appeared...I think my initial interpretation of them was incorrect. These symptoms resembed the way I felt during my 'trigger event' in '83 of CMV and hepatitis. I am very sure this is not the case because of the speed in which they resolved, and the fact that I was missing some of the important indicators (like the whites of my eyes turning a little yellow, or the onset of 'hepatitis malaise').
What is interesting is that I have found only one sarc patient who has listed either CMV or EBV in their medical backgrounds...while these are found in the majority of the old 'yuppie flu' folks like me who's trigger event was back in the early '80's.
There is one fellow on sarcinfo who reported EBV in his history, and it was a history which resembles classic CFS...until he got a sarc diagnosis in 2000. The only other reports of EBV or CMV came from two CFS gals who posted at sarcinfo in the weeks following TM's interview at immunesupport.com. The other post that mentions the two 'mystery symptoms' of CMV/EBV is on the 'medical abbreviations' thread.
So, during the time around my last post, I was wondering if any of these 'resident virus's' could reactivate while on the MP...but nobody on the MP has reported this. It is interesting that the CFS folks having this problem while it's virtually non-existent in the sarc pop... may reflects genetic differences between the two groups.
And the fellow I found on sarcinfo with the 'probable' CFS profile has been on the MP for about a year now...this is what he said about the MP on a recent post:
"The MP is the first medical treatment I've had that has made a positive, noticeable, lasting effect on my symptoms. (Prednisone made me feel great for a couple of weeks, but not after that.) I still tire very easily, and the herx is unpleasant, but I feel like I'm getting my brain back. It's slow, but after 40 years of this disease (I think things started getting bad in 1964), I'm willing to tolerate this for a few years if a cure lies at the end."
Jerry
PS... **DANGER DANGER**-->>nearly clueless speculation below:
The prevalence of CMV/EBV may indicate that the CFS folk's immune systems tend to recognize the bacteria and react with more vigor than do the sarc patients...tilting the immune system way over to the 'attack the bacteria' end, which allows the virus's to become active. That may also explain the higher sensitivity to low dose mino that the CFS folks seem to have.
____________________
Yuppie flu -> CFS -> YouNameIt
Some symptoms since '60 (vaccine reaction)
1,25D = 62........25D = 18
MP since July 27, 2004
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Aussie Barb
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Posted: Mon Oct 25th, 2004 20:52 |
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Jerry,
have you noticed if the Quercetin makes any difference to the IBS?
if you do will you let us know how you go please? we are thinking it may be helping..
Thanks for posting, Barb....
Last edited on Mon Oct 25th, 2004 20:53 by Aussie Barb
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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JerryD
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Posted: Mon Oct 25th, 2004 22:42 |
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Barb,
I never had a history of 'classical' IBS...it has only appeared after the mino dosing while on benicar, and is only a brief episode. Another effect that benicar had on me...and that is the opposite of the norm...is that taking benicar corrected a long history of constipation.
As far as I can tell, the addition of Q did not effect any of the above symptoms. But fortunately I don't have enough 'data points' of IBS-like episodes to allow any reliable conclusions.
Jerry 
____________________
Yuppie flu -> CFS -> YouNameIt
Some symptoms since '60 (vaccine reaction)
1,25D = 62........25D = 18
MP since July 27, 2004
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Aussie Barb
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Posted: Mon Oct 25th, 2004 23:58 |
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Sorry Jerry I didn't make myself clear.
I'm interested if the timing of the relief of IBS coincided with the taking of Q?... Barb....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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