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Sam
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Posted: Sun Oct 10th, 2004 00:37 |
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Hello everybody,
I am pleased to report that I seem to be making steady progress on the MP with only light cycling symptoms so far. In other words, the herx hammer (haha) has not hit me hard enough yet to significantly hamper my normal activities. To clarify, normal activity for me is working part-time from home and taking multiple rest periods during the day. Prior to starting the MP, my condition had deteriorated to include quite a bit of pain, and neurological symptoms in addition to the cyclical crushing fatigue and additional CFS Sx I've experienced for many years. Anyway, since starting the MP, I've been fortunate to experience a net positive effect and associated increase in functionality. On a functional scale of 1 to 10 with 10 being completely healthy and 1 being completely disabled, I would rate myself at 4 before starting the MP and 5 to 6 now.
I started minocycline at 12.5mg just to play it safe, given my moderately high 1,25 D of 68.
Later. Moderators Note: These low Mino doses are no longer recommended.
Since I had no reaction, I moved to 25mg on the next dose and have proceeded to increase the dosages according to the normal MP every-other-day dosing schedule. I'm presently at 75mg of minocycline. Following are some Sx I've experienced since starting the minocycline which lead me to believe it's doing the job:
-Transient stabbing right-eye pain (new Sx)
-Transient additional fatigue, mainly the day after taking mino
-Transient muscle soreness in neck and both shoulders
-Transient increased pain in locked (left) shoulder, but improvement overall
-Cycles of insomnia which seem to be improving overall
-Transient burning in lower right abdomen. IBS trouble spot
-Less pain and sensitivity under crowned tooth
-Left ear no longer draining and itching
-Orthostatic Hypotension episodes lessening
-Transient episodes of bronchial congestion and coughing
-Long-standing depression continues to improve without antidepressants
I'm wondering if my easy MP ride so far is in part due to a combination of consistent tid Quercetin dosing combined with a very restrictive gluten-free, low-carb diet.
Prior to starting the Minocycline, I posted that I was having improved results by dosing the Benicar 20mg at 4-hour intervals. For convenience, I've now gone back to taking 40mg Benicar and 500mg non-citrus Solary quercetin together, tid, at 6am, 2pm, and 10pm. After a couple weeks, I've not been able to tell any reduction in the blockade over the previous dosing schedule.
That's all I can think of for now. Hope this helps. Rather than posting daily Sx reports, I plan on posting periodic summaries and/or any significant changes to my condition.
Best,
Scott M.
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Mary
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Posted: Sun Oct 10th, 2004 17:00 |
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| Thanks for your update. For those of us waiting to start the MP, it is encouraging to read about others' progress. I noticed that you took Benicar and quercitin for about a month before attempting antibiotics. This makes so much sense to me. Let the body adjust to the changes that Benicar brings, and then begin the antibiotics. Seems that those who do this tend to succeed with MP. Mary
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Not MP: Chronic Lyme RA. Been ill for 22+ years 8/04 tests D25 47,1,25D 39,CRP 3.3 high.. Benicar for BP only.
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Reenie
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Posted: Sun Oct 10th, 2004 21:04 |
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Sam,
I can relate to some of your herx sx, and to the term you use, "...the herx hammer (haha) has not hit me hard enough yet..."
Let me add some food for thought. 
Although my initial 1,25-D was higher than yours, my diligent cave dwelling drastically lowered it, prior to taking Benicar, so I figured lowering my 1,25-D would allow me to herx. Maybe, maybe not... 
I'm having mild herx sx, like you, but my 25-D is still very high, (in sig lines) which I didn't realize how much that can also affect the ability to herx, until Aussie Barb quoted Dr M about this. Your 25-D is lower than mine, but still high, so the "herx hammer" may still hit at anytime, IMO, for BOTH of us.
I started at 3mg on 9/9, working up a little slower than you, now at 62.5mg, thinking I can take my next dose at 75mg, since my herx, like yours, is still very mild, mainly increased fatigue and IBS.
IMO, we are still at risk, anytime, to have a stronger herx, due to our high 25-D levels. I believe this is why we are encouraged to take our time on progressing to 100mg, since we have to lower our D levels first, to be safe from the herx hammer.
Dr Marshall says, "You haven't documented any noticeable herx yet. Looking at your signature line you really haven't been on the MP for very long, (two months) and we like to see folks understand what herx feels like before they progress to phase II.
Herx can be delayed by other drugs, and it can be suppressed by high levels of 25-D, such as you have. From your initial value of 50ng/ml it might take as many as 4-6 months for that level to drop into a therapeutic range. I would want to see your 25-D down around 20ng/ml or so, before starting the really strong antibiotics. Otherwise there is a chance you will have serious cardiac herx (for example) when it finally begins to hit."
http://www.marshallprotocol.com/view_topic.php?id=880&forum_id=11&msg=3
Last edited on Sun Oct 10th, 2004 21:28 by Reenie
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Sam
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Posted: Sun Oct 17th, 2004 21:16 |
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A few days after I wrote my last update, I began to herx much more strongly. This started 3 hours after taking my third 75mg dose of mino and proceeded to worsen after the fourth 75mg dose of mino. After waiting for the herx to subside ( 3 days since last mino dose ), I took 50mg of mino, hoping the herxing will continue, but with a little less intensity. Following are the most prominent symptoms:
-Severe transient nasal allergy-like attacks (atypical)
-Glands in throat sore
-Transient chills
-IBS flare including constipation, bloating, abdominal discomfort
-Left shoulder, both knees, and lower back pain.
-Transient full-body flu-like achiness.
I didn't feel need to increase Benicar to qid, but certainly would have if necessary. Strongest herx seems to be between hours 3 and 40 after taking the mino.
Scott M.Last edited on Sun Oct 17th, 2004 21:32 by Sam
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Aussie Barb
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Posted: Sun Oct 17th, 2004 21:41 |
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Interesting for Many & Important to Note, thank you Scott 
That after 4 doses of 75mg mino herx ... and a 3 day gap wait for bigger herx to stop .... you dropped to 50mg & still herxed.
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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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Reenie
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Posted: Sun Oct 17th, 2004 22:07 |
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Sam,
It seems to me that it's likely your 25-D is now below Dr M's "magical" number of 20, which would most likely cause you to be more sensitive (herx stronger) to lower doses of mino.
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Aussie Barb
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Posted: Thu Oct 28th, 2004 00:45 |
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Scott,
How are you now then?
You may have seen but I am just letting you know that there is a new, updated version of *How to Start the MP* with much more information.
You may wish to read the updated instructions, and it is a good idea to print and provide a copy for your MP Dr.
from http://www.sarcinfo.com/phase1.pdf ....
There are other Important new documents as well.
Letting all MPers know to please keep an eye out for all new information posted on the MP site as you keep in touch with us in your Progress Reports regularly, so that we may help you to do MP with the utmost efficacy...
Thank You, 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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Sam
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Posted: Wed Nov 3rd, 2004 19:26 |
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Barb and All,
Sorry I haven't been able to reply, and thanks for bringing to my attention the updated MP info.
Today is the first day in two weeks I've been well enough to try and type anything, and even now I'm reclined in bed with my wife's laptop.
I've had a very rough time since hitting 50-75mg on minocycline. I took my last dose of mino 11 days ago (50mg) and am still suffering with left-side abdominal and low-back back pain (mostly left-side) to the point of not being able walk at times. The low-back pain seems to be muscular, but yet linked to the abdominal pain, sharp, and all the way through, front to back. I was taking Solaray brand non-citrus quercetin and have stopped-started-stopped it with no noticable difference in pain/Sx. Also was already on gluten-free diet for one month before starting minocycline. I've been eating nothing but well-cooked organic brown rice and homemade chicken soup for about a week, since those seem to cause less gut symtoms than anything else and are hypoallergenic for me. I've tried adjusting the Benicar dose first up and then down, with no difference. Ibuprofin doesn't seem to make much difference either. The pain is quite severe at times, mostly when trying to sit or stand. Heat and/or cold packs have helped somewhat. I'm presently on 20mg Benicar every four hours w/o quercetin.
Any ideas? Do you think the Mino could have uncovered some bacteria in my gut and my immune system continues to fight, even after 11 days? I did get very constipated right before all of this started. I took milk of magnesia to get things going and magnesium and calcium ascorbate to keep things moving ever since. The left-side abdominal pain is somewhat strange because my IBS-related abdominal pain has always been on the right-side. Gas bubbles on the left side aggrevate the problem and are very painful, triggering the back pain too.
I guess my plan is to start mino again at 25mg if I ever get past this, but I'm apprehensive about that, because if this is herx event, I've certainly had very little to no control over it.
Additional information. I had positive stool exams for entameoba histolytica a number of years ago and question whether the standard treatments Flagyl/Yodoxin and Artemesia/Grapefruit Seed extract completely eliminated the Ameoba's. Relevance? Ideas?
TIA
Scott M.
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Reenie
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Posted: Wed Nov 3rd, 2004 23:57 |
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Sam says, "I've tried adjusting the Benicar dose first up and then down, with no difference."
I notice you say you're taking Benicar 20mgs q4h. Did you try taking 40mg q4h? This is the recommended amount to take for severe herx sxs. IMO, I would try taking that amt of Benicar for at least a few days, to see if that helps.
Another idea would be the lemonaide... Madwolf recently gave his recipe again, and he says that Dr M believes that this "recipe" stops the herx, rather than just alleviate the sxs, so if that's the case, you'd stop killing bugs, but you'd feel better too, if this is herx.
Madwolf says,
"One of my patients gave me this recipe:
One lemon, skin, seeds and all
Two Cups of water
Three tablespoons of extra virgin olive oil
put in blender on liquify
It looks like skin milk but tastes like lemonaid. Trevor is convinced that it stops the "die-off" of the bacteria, therby stopping the Herx. I use is sparingly, when the herx is so bad that I can't tolerate it, any more. I feel a lot better whithin 30 - 45 minutes.
This is not to be confused with how Quercitin works, controlling the herx while allowing the die-off to continue."
http://www.marshallprotocol.com/forum30/1173.html
I hope you feel better soon. Take care.
Last edited on Thu Nov 4th, 2004 00:01 by Reenie
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Sam
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Posted: Thu Nov 4th, 2004 00:07 |
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Reenie wrote:
Sam says, "I've tried adjusting the Benicar dose first up and then down, with no difference."
I notice you say you're taking Benicar 20mgs q4h. Did you try taking 40mg q4h? This is the recommended amount to take for severe herx sxs. IMO, I would try taking that amt of Benicar for at least a few days, to see if that helps.
I hope you feel better soon. Take care.
Reenie,
Thanks for the thought, but...
Yes, I tried Benicar 40mg q4h for a couple of days, and, unfortunately, no discernible difference; if anything, a little worse during that time.
Scott M.Last edited on Thu Nov 4th, 2004 00:14 by Sam
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Sam
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Posted: Fri Dec 3rd, 2004 17:09 |
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Dr. Marshall, Meg, and All
I've experienced a very slow recovery from the severe herx outlined in my previous post. Increasing Benicar to 40mg q4h and/or adding Solaray citrus-free Quercetin 500mg tid only worsened symptoms ( Abdominal pain, back pain, and left-buttock pain to the point of not being able to walk ). I was finally able to recover about 80% of pre-minocycline pain/energy level by stopping the minocycline and reducing the Benicar to 20mg q8h plus adding the following supplements (Previously taking no additional meds or supplements):
Pure Calcium Ascorbate Powder (Non-acidic vitamin C) 1g tid
Magnesium Citrate (200mg Mg) bid
psyllium husk powder 1 tsp/day
Ibuprofin 400mg tid (Stopped because it didn't help)
After 18 days off minocycline and on the above supplements, I improved enough that I added 25mg qod back in and continued my slow improvement. I've now been taking 25mg minocycline plus Benicar 20mg q8h to 20mg q4h for about one month. Every time I increase the Benicar, my symptoms seem to worsen slightly. I've tested this many times. It seems that for me, increasing the dose of Benicar potentiates the minocycline, thus slightly increasing the herx rather than relieving it.
My recovery seems to have plateaued, but symptoms are mild enough now that I'm considering increasing the minocycline to 50mg qod. I have read the revised phase 1 info and am prepared to try narrowing the minocycline dosing interval, as recommended, if the herx starts becoming too strong.
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Dr. Marshall or Meg:
When time allows, I would really appreciate your feedback on this before I attempt increasing the minocycline to 50mg.
Thank You
Scott M.
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FYI, my sun/light exposure has been nil. I never went outside the house during the six week period of worst symptoms and only currently (completely covered up) if I absolutely have to. I wear eye protection every waking minute, indoors or outdoors, and keep blinds closed. I'm on a low-carb, gluten-free, D-free diet and have lost 20 lbs over the past three months ( I was not overweight to start with ).
Last edited on Fri Dec 3rd, 2004 19:01 by Sam
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Dr Trevor Marshall
Research Team
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Posted: Fri Dec 3rd, 2004 17:49 |
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Scott,
Have you thought of trying to decrease the minocycline and increase the benicar to blockade dosage? The advantage of getting to the blockade dose is that then you will get a palliative action from benicar, in addition to it weakening the bacteria. At the lower doses you only get the bacterial weakening effect and not the palliative effect.
..Trevor..
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Sam
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Posted: Fri Dec 3rd, 2004 18:22 |
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Hi Dr. Marshall,
Thank you for your reply. I probably didn't communicate it very well, but yes, I have tried increasing the Benicar all the way to 40mg q4h for a few days at a time in combination with 25mg mino qod. The more I increase the Benicar, the worse the symptoms become. The worsening is mild, but the point is that the Benicar does not seem to have a palliative action for me. Going up on the Benicar dose prior to starting the Mino was no problem at all, but in combination with the mino, the palliative action seems to be absent.
After a very slow recovery, I'm currently doing fine with 20mg q4h Benicar + 25mg mino. But, I wanted to bring this to your attention before I increase the dose of minocycline, since I don't think I can count on getting a palliative effect from Benicar 40mg q4h.
I have not tried 12 hour or 24 hour dosing on the Minocycline, because that information became available after I had already made significant improvement.
Thanks again,
Scott M.
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Aussie Barb
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Posted: Fri Dec 3rd, 2004 18:44 |
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Dear Scott,
For me Benicar 20mg Q3H is better than a 40mg dose.
all the best, 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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Meg Mangin R.N.
Former Team Member
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Posted: Sat Dec 4th, 2004 05:45 |
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Scott,
I think it's okay for you to take Benicar 20mg every four hours. As you can tolerate the mild increase in Herx reaction, you should try to increase to the better blockade dose of 40mg every six hours. You may not notice a palliative effect but your organs will thank you because they will be better protected against the damage that temporary increased Herx inflammation might cause.
Best,
Meg
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Sam
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Posted: Sat Dec 4th, 2004 15:56 |
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Dear Meg, Aussie Barb, Trevor,
Thank you for the feedback. Based on my understanding of your responses, here's my plan:
Stick with 20mg q4h Benicar as a base dose. Since my herx/pain symptoms have mostly resolved and are no longer varying at a dose of 25mg minocycline qod , I will try increasing the minocyline to 50mg qod and be alert for symptomatic change. At the first sign of worsening Sx, increase the Benicar to 40mg q6h and stick with that dose even if it aggravates the Sx further. If the Sx become close to intolerable, then based on the new Phase 1 info, increase the Minocycline to 50mg q24h or 25mg q12h.
Does that sound correct? I just want to be sure I understand all the new information and have the best chances of succeeding this time.
Thank You,
Scott M.
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Meg Mangin R.N.
Former Team Member
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Posted: Sat Dec 4th, 2004 18:19 |
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Scott,
That sounds like an acceptable plan except that if you get intolerable symptoms, you should change the minocycline schedule to 25mg q24hr or 12.5mg q12hr per the phase one guideline. Be sure to let us know how you get along.
Best,
MegLast edited on Sat Dec 4th, 2004 23:06 by Meg Mangin R.N.
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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Sam
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Posted: Tue Dec 7th, 2004 03:20 |
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Meg Mangin R.N. wrote:
Scott,
That sounds like an acceptable plan except that if you get intolerable symptoms, you should change the minocycline schedule to 25mg q24hr or 12.5mg q12hr per the phase one guideline. Be sure to let us know how you get along.
Meg,
Based on the new Phase 1 info, I'm confused as to why I would drop back to 25mg q24r or 12.5mg q12r if the herx becomes close to intolerable at 50mg q48r? Seems like that would be dropping back to a less effective level than 25mg q48hr which I was doing fine with before increasing to 50mg q48hr. The last two sentences (bolded by me) in the following quote from the new Phase 1 info leads me to believe I should go to 50mg mino q24hr or 24mg q12hr if the herx becomes intolerable at 50mg q48hr:
"Minocycline elicits the maximum Herxheimer response as its tissue concentration decays away to zero. If Herxheimer symptoms are intolerable, take minocycline 12.5mg every 12 hours or 25 mg every 24 hours. This dosing schedule ameliorates the Herxheimer reaction because the 12-hour dosing of minocycline maintains a level of antibiotic which is not very effective at killing the intra-phagocytic bacteria. If you are already taking a higher dose, reduce the dose to 25mg every 12 hours or 50mg every 24 hours. As your symptoms ease, gradually lengthen the dosing interval back to the optimal 48 hour mark"
Am I missing something here? Am I the only one confused by this? I guess the question is, what is meant in the above quote by "If you are already taking a higher dose....". Higher than what? I assumed higher than 25mg q48hr.
I increased my dose of minocycline to 50mg q48hr yesterday. This morning I noticed a mild increase in the same symptoms detailed previously; therefore, I went ahead and increased the Benicar to 40mg q6h. After the increased Benicar, the Sx seemed to worsen a little more, but I'm pleased to report that by tonight, I'm feeling even better than before upping the dose of mino. So, I'm encouraged at this point. We'll see what happens after a few more doses of mino 50mg q48hr. I've noticed that I seem to get hit the worst after the third or fourth dose of mino at a particular dosage level.
Meg, thanks for all of your dedicated hard work. Sorry if I'm missing something in the above paragraph from the new Phase 1 info.
Confused,
Scott M.
Last edited on Tue Dec 7th, 2004 03:30 by Sam
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Meg Mangin R.N.
Former Team Member
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Posted: Tue Dec 7th, 2004 04:03 |
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Scott said, "I'm confused as to why I would drop back to 25mg q24r or 12.5mg q12r if the herx becomes close to intolerable at 50mg q48r? Seems like that would be dropping back to a less effective level than 25mg q48hr which I was doing fine with before increasing to 50mg q48hr."
Scott,
I think the answer to your question is in your own text. If your Herx is intolerable at 50mg every 48hr, then you want to drop back to a less effective level. And increase the frequency to every 12 or 24 hours to keep the level of mino stable because it is most effective at killing bacteria (and causing Herx) when the concentration is waning.
If you were doing fine with 50mg q48hrs, then these directions are not meant for you. Keep it in mind if your Herx becomes intolerable. You can also simply stop the mino or skip a day to see if that helps decrease Herx first before you go to the Herx ameliorating schedule of more frequent mino dosing.
Best,
Meg
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Sam
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Posted: Tue Dec 7th, 2004 05:02 |
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Meg Mangin R.N. wrote:
Scott,
I think the answer to your question is in your own text.
Meg,
Sorry, but it still doesn't make sense to me based on the information in the Phase 1 docs. For example, lets say that I herxed badly at 50mg q48h and then dropped back to 25mg q24hr. Then, according to the phase one guidelines, I should slowly increase the mino dosing interval a few hours at a time until reaching the more effective dose of 25mg q48hr. Why would I spend all that time working back up to a dose which was not causing the herx in the first place. I understand the logic for going to 25mg q24hr or 12.5mg q12hr IF trying to control a herx that started at 25mg q48hr, but not for a herx than started at a "higher dose". Again, I think the new Phase 1 info is unclear on this point. Please re-read my previous post. What is meant by the statement "If you are already taking a higher dose, reduce the dose to 25mg every 12 hours or 50mg every 24 hours." in the Phase 1 docs? A dose higher than what?
I won't beat this into the ground anymore, but wanted to reiterate that the logic is contradicatory and language unclear, at least to me. Maybe I'm the only one that doesn't understand. If so, I'll just proceed as best I can and not worry about it.
Best,
Scott M.Last edited on Tue Dec 7th, 2004 05:09 by Sam
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