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Joyful
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Posted: Sun Sep 16th, 2007 04:48 |
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Anne,
You are taking on something so very difficult... but to imagine what you will gain in the end! The current medical establishment does not have a way to recognize "bacterial load" and we now know that the Th1 pathogens compromise the immune system's ability to generate antibodies. So how are you going to know? Well, there were some people who have used the Bowen tests to see that the bacterial load is actually going down while on the protocol. George's comment is a couple years old now, but you could PM him and find out more, I'm sure.
George wrote:
After nuclear amounts of varying antibiotics over a long period of time, I tested at the highest dilution ratio of 128 on the Bowen RIBb test in June 03. I continued those abx, and was re-tested in Dec 03 at ratio of 64. I thought that I was gaining ground, so continued the abx including as much as 1,500 mg of Flagyl abx, which is tauted to cause very strong herxes. In April 04, my Bowen dilution ratio was again at the highest, 128. I was very depressed about the situation. I discovered the MP on June 9, 2004, and started the MP on September 1, 2004. I re-tested with the Bowen on April 19, 2005, and had a dilution ration of only 32. I am elated!!
I know the success story entries have lots of comments on improvements in all areas, but I looked around for you to see how this protocol has helped others with the neuro issues.
Did you see Julia's recent post here?
Here are a few more I found by seaching with this phrase:
[site:marshallprotocol.com improvement cognitive memory]
Jacks: Neuro-tickborne disease: mental/cognitive improvement
Belinda memory and concentration problems and depression
JRFoutin Janet: brain fog cleared and I won my life back
Tom: CFS: pleasantly surprised at my cognitive improvement
eClaire: CFS: memory and reason
Redsandraven: neurosarcoidosis: eyesight, skin tags, scars, brain fog, depression really getting better
John McDonald's RA: Phase 3 update
There are many more, but that should get you started. 
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Anne Scott
Member in Phase 3
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Posted: Sun Sep 16th, 2007 06:40 |
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Joyful,
you're kind to have sent me all these links; thanks so much. And I emailed George too, just to say how I thought his progress was so encouraging.
The one thing I'm having trouble getting my mind around is how, when the mino attaches itself to the wall of the CWD cluster of L-forms and basically bursts open this cluster and sends the spirochetes circulating all over the place (as seen on Marshall's DVD), then what happens to these spirochetes? If they're so well defended, then they'll just go hide somewhere else, I'd assume, and would overload the immune system once again. I wish I could see, with my very own eyes, a spirochete being let loose from the damaged cluster and then being zapped by my own immune system, which is allegedly happening, right? I'll send this note to George also...
Thanks!
Anne
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Lyme babesia HHV-6 Ph1Aug07 progesterone walnut oil NoIRs cover up lite exp r/t work ModPh2Dec07 Ph2Jan08 Ph3Apr08; D=15 (4/09)
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Anne Scott
Member in Phase 3
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Posted: Mon Sep 17th, 2007 08:05 |
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Benicar: August 30, 2007; 40mg. H6Q
Minocycline: September 9, 2007: 25 mg., once per day.
Light Protection: Everything but face and hands (+ zinc oxide cream). House partially darkened.
Bolle Viper 100 series, medium amber (18 hours/day).
Activities: working 40 hrs/week at university (a leave of absence isn't possible right now); staying inside mostly; a little bit of exercise each week.
Symptom Pattern: IP strongest on 2nd day. Symptoms were resolving almost completely before next dose, but now are resolving just partially before next dose, as if I'm building up too much IP for my body to handle.
Symptoms: Various: headache, chills, sharp pain in neck, cramps in hands/feet, brain fog, muscle weakness (arms/legs), memory problems, agitation, wakefulness, eye sensitivity, skin sensations, a little anxiety, and finally, tiredness. 
Improvements: No gum problems; some symptom improvement upon taking next dose of Benicar, less eye sensitivity than last week.
This is my progress report for the past few days. I'm shocked at how many symptoms I have (similar to the most powerful "herx" I've had times 4), for how little time I've been on the mino. (and such a small dose at that). I clearly have lots of CWD bugs to kill. Sometimes I think I need help purging the neuro-toxins and other stuff that my body is trying to get rid of, before the next dose of mino. My system feels clogged with too much right now.
I've heard tell of lots of Lyme patients who quit the MP because they can't manage to struggle with all of these IP symptoms. I don't want to be one of those quitters, because I want to get better and stay better.
I'd appreciate some advice about how to handle the excess of symptoms, other than taking more benicar which I can't afford. (My insurance limits what I can take, and I have none to spare for sublingual 20mg. dosages, etc.) I could try spacing the doses of mino. across 3 days, not 2. But I'm especially interested in seeing what I might be able to ingest in order to help my body purge the toxins, if there is anything I can take. What is the prevailing wisdom about "chito-san," a product that is supposed to absorb Lyme neurotoxins so that we don't reabsorb them?
Thanks for anybody's collective wisdom on these issues.
Anne
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Joyful
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Posted: Mon Sep 17th, 2007 08:25 |
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Anne,
I do have this concern that perhaps some of the people trying the MP for LD were so used to pushing through the herxing on the standard treatments that they made errors leading to "runaway IP." I don't really know if that was the case, but that may be what has happened in the past.
As for the toxin clearing, I do know that stretching out the mino cycle to 3 days seems to be what my body needs at least once a week. It doesn't cost you anything more to try and it might work for you. 
Hope you find your balance quickly!
~Joyful~
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Posted: Mon Sep 17th, 2007 10:34 |
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We understand it may be difficult but the MP must be followed exactly.
Chito-san is contraindicated. Please see Why do I have to stop my alternative treatment and avoid most supplements?
It isn't necessary to 'detox'. Please see Do I need to detox while on the MP?
Please note that:
-Combining other protocols with the MP will not work and can lead to dangerous immunopathology
-It is the patient's responsibility to see that the prescribing doctor is following the MP correctly.
-It is the patient's responsibility to see that the prescribing doctor understands the effectiveness of the MP and the dangers inherent in deviation from the guidelines.
It is up to you to manage the immunopathology. The links give the details step by step. Please see My immune system reaction is too strong. What should I do?
You are reporting intolerable immunopathology and significant sun exposure yet state that you cannot follow the essential protocol recommendations to increase Benicar or avoid sunlight. Having enough Benicar and the capacity to avoid sunlight are two of our Inclusion criteria for participation in ARF phase II clinical study of the Marshall Protocol. We cannot provide counseling for members who don't meet these criteria.
If you are unable to afford enough Benicar or take a leave of absence from work, you may need to postpone your recovery till a later date.
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Anne Scott
Member in Phase 3
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Posted: Mon Sep 17th, 2007 19:24 |
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Dear Meg:
I am avoiding most if all sunlight. The only parts of my body that are exposed to any daylight are my face and hands, which I coat with zinc oxide. Saying that I "won't" avoid sunlight is erroneous. I'm avoiding it as much as is humanly possible, given my situation. I have read the MP website concerning sunlight exposure, and have read all of the posts that say that patients should do all that they can do to avoid sunlight. I am doing exactly this. I am following this directive to the letter. Please do not assume that I am being "recalcitrant" or "non-compliant." This is not the case.
As for the Benicar, as soon as a Canadian company can get me more pills as a self-pay customer, this scarcity of pills won't be an issue. I'm working on this issue every day. In the meantime, I am able to take 4 per day, every 6 hours, as directed by the MP website. Again, I am being as compliant and will get more meds soon.
I did not see a discussion of chito-san contraindicated. This is why I asked. Just because I ASK about a substance doesn't mean that I will go ahead and ingest this supplement. I am committed to the MP protocol. However, like many Lyme patients, we have been told through reputable doctors and websites that certain things are helpful. Raising the question about the supplements with you or someone else doesn't make me non-compliant. It simply means that I'm seeking an answer to a question, nothing more.
Of course it is "the patient's responsibility" to handle IP symptoms. Of course this is true. I've never thought otherwise!
I will ask no more questions about anything, since it provokes this kind of misinterpretation. And I will handle my IP symptoms as best as I can, with the already-posted information on the website.
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Posted: Mon Sep 17th, 2007 20:26 |
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I did not write that you "won't" avoid sunlight. I wrote that you cannot avoid sunlight. You may believe your sunlight exposure is not significant but your symptoms suggest otherwise. I did not state, nor do I assume, that you are being "recalcitrant" or "non-compliant." I understand that your current lifestyle is not conducive to avoiding sunlight and only suggested that you might have to make a change.
There are no specific discussions of chito-san or many of the other things you may have been told are reliable because we don't have time or space to discredit them. You've asked about alternative treatments before and were referred to this FAQ which quotes Trevor, "The so-called 'alternative treatments' have failed to work for you, and, in the long-term, failed to work for everybody else who has tried them. Why do you still ask about them when you have the keys to full recovery amongst the folk here at our study-site?"
Please follow, exactly, the Phase One Guideline which states "combining other protocols with the Marshall Protocol is contraindicated".
I'm sorry you are having trouble obtaining enough Benicar to get you through this rough patch and I hope you can manage the immunopathology by other means.
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Anne Scott
Member in Phase 3
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Posted: Mon Sep 17th, 2007 22:23 |
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Occasionally, there is a post or a thread that updates the MP. I know that other approaches combined with the MP are contraindicated. I've read this a million times. However, in these updates (which I might have missed, trying to scan through so much information), someone, somewhere, might have discussed chito-san as compatible with the MP. If it's not, and if no update to the MP endorses this product, then fine. A simple "no, it's not endorsed by the MP" is fine without the apparent need on the end of MP website monitors to also say, or imply, "what's wrong with you?! why do you keep asking? are you so stupid as to have not read the website to figure this out on your own?" Over and over again, the various websites posted by the official website creators say, and invite, MP members to "ask" someone on the website if they have a question about this or that. Inviting MP members to ask questions, only to chastize them for doing so, doesn't make anyone feel better, nor does the fear of offending or triggering T. Marshall's anger and sarcasm help anybody's immune system.
To the best of my ability, I will refrain from asking questions; will private email MP members for their input without having to channel it through any MP website monitor, and will -- as I have stated repeatedly -- conform to the protocol to the best of my ability. (There is even a post by Marshall himself (or some other head honcho) that suggests that persons might try the MP even IF they cannot comply a complete 100 percent, since the MP may still help these persons over time.) My 90-95 percent compliance is darned good by my estimation and many others', and I ask that I be respected for trying for 100%, even if I cannot reach that goal due to unavoidable circumstances.
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jrfoutin
Research Team
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Posted: Mon Sep 17th, 2007 23:16 |
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Anne,
Communication via posting is not always perfect, but it is an opportunity that requires some work to bridge any gaps. The nurse moderators are working to help a lot of people and direct, clear and succinct is just that, direct, clear and succinct.
It is impossible to list all the different modular options that fills the world of "something other than the MP," so a simple statement like this from Dr Marshall covers all supplements well:
"My position is simple. All supplements and drugs are likely to give rise to problems. Focus on what is causing the illness, and use the bare minimum of intervention. Ultimately the body will look after itself."
Dr. Trevor Marshall, Ph.D
Adding to the MP or looking for something to add to the MP isn't what members are encouraged to do, especially from supplement-by-definition sources. If an update occurs, it will come through the scientific team after due process.
It is a privilege to post here, and moreso to get a rare dialog opportunity with Meg Mangin R.N. Few on the planet know the MP like she does. Please do not use this forum to say anything negative about Dr Marshall, who has spent years and sacrificed much to find a way for others to get well.
For safety and for efficacy of learning how to recognise and manage immunopathologic responses, one must post rather than PM. Members are not encouraged to offer medical advise in a PM.
I hope you are charting, and noting events and interactions. Please notice anxiety, confusion, distrust, anger, and even rage can indicate one is working the pathogens. I found that giving myself some space during those times produced a better hope for the future. Then I'd evaluate later for 20-20 perspective. (It helps to use a neutral business voice to re-read posts if there is some concern, rather than react.)
I also review several pages of posts at a time to get a much different perspective of where I am in the MP and about my progress. You might find that helpful too.
Best to you Anne--Janet
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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Anne Scott
Member in Phase 3
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Posted: Thu Sep 20th, 2007 05:57 |
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Benicar: August 30, 2007; 40mg. H6Q
Minocycline: September 9, 2007: 25 mg. H48Q
Minocycline: September 18, 2007: 50 mg H48Q
Quercetin: September 15, 2007: 20 mg. H8Q
Light Protection: Everything but face and hands (+ zinc oxide cream). House partially darkened.
Glasses: Bolle Viper 100 series, medium amber (18 hours/day); plus darkest Noirs outside.
Symptom Pattern for Mino, 25mg H48Q: Non-existent symptoms for 1st dose, then more symptoms after 2nd dose (18 hours afterwards) but resolving before next dose, then more and more symptoms that weren't resolving before the next doses at all (or resolving with extra doses of mino), until I had every symptom listed as follows: headache, chills, sharp pain in neck, cramps in hands/feet, brain fog, extreme muscle weakness (arms/legs), memory problems, agitation, wakefulness, eye sensitivity, skin sensations, anxiety, tiredness. Neuro Symptoms greatly improved with Quercetin, enough so that I felt I could move to the next phase of mino (50mg).
Symptom Pattern for Mino, 50mg: H48Q: No pattern yet, though the severe symptoms I had while on 25 mg. have not occurred. After taking just 1 dose of 50mg., I've noticed no severe herx/IP at all. I'll wait and see what happens next.
Current Symptoms: mild muscle weakness but nothing like before; mild headache (but nothing like before); light sensitivity in eyes; mild tingling in hands/feet; stabbing pains in neck/spine upon waking, which go away by noon; mild tiredness. I can walk normally; teach my classes; grade papers.
I will be observing two things while on the 50mg dosage: (1) waiting once for 3 days to see if my IP is strongest on the 3rd day; (2) seeing if the pattern for Mino 25 mg holds true for Mino 50 mg (namely, an escalation/irresolution of symptoms the longer I'm on that dosage, indicating that perhaps I need to move to the next highest dosage).
Other things I'm doing: taking epsom salt baths once in a great while, getting a little more rest, wearing my darkest glasses while outside (I was wearing the medium amber ones before this), darkening my bedroom/bathroom more so than previously, and taking little “dark” naps while at work (where I close my eyes, cover my eyes completely with a thick black cloth, take off my glasses, and rest for a few minutes here and there.)
Thanks.
Anne
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Joyful
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Posted: Thu Sep 20th, 2007 09:20 |
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Anne,
I love your description of taking "dark breaks" during the day!
Great idea!
~Joyful~
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Posted: Thu Sep 20th, 2007 18:56 |
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Sounds like you are making a real effort to reduce your light exposure and get more rest. This should dampen symptoms a bit.
Most anecdotal reports indicate that taking quercetin during the initial phase of the MP does not reduce the immunopathology and sometimes makes it worse. We are, therefore, very cautious in introducing it to MP patients. At later stages of the MP, many report some palliative effect from quercetin, with reduction in some immunopathology symptoms. Trevor states, "I would always suggest Doc increase the Benicar frequency rather than increase Quercetin. IMO there is less risk that way, and the risk has been closely studied by the FDA." Please see QUERCETIN and How often should I take quercetin?
Good to see that adjusting the Minocycline has been helpful to your symptoms and to your understanding. The same gaining of experience will come as you further adjust your Benicar dosing to dampen, and assess the response.
Earlier you asked, "The one thing I'm having trouble getting my mind around is how, when the mino attaches itself to the wall of the CWD cluster of L-forms and basically bursts open this cluster and sends the spirochetes circulating all over the place (as seen on Marshall's DVD), then what happens to these spirochetes? If they're so well defended, then they'll just go hide somewhere else, I'd assume, and would overload the immune system once again. I wish I could see, with my very own eyes, a spirochete being let loose from the damaged cluster and then being zapped by my own immune system, which is allegedly happening, right?"
The MP target bacteria without any walls. Minocycline weakens the bacteria so the immune system can kill them. Spirochetes are a mere co-infection. Please see:
Will the MP treat co-infections?
What should I know about Minocycline?
CELL WALL DEFICIENT BACTERIA AND THE MARSHALL PROTOCOL
Please use caution with hot baths as they increase immunopathology. See #11 in this FAQ and Is it okay to take magnesium?
Hang in there!
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Anne Scott
Member in Phase 3
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Posted: Thu Sep 20th, 2007 20:46 |
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Thank you, Meg, for your helpful email.
I'll watch the hot baths. I'm just taking them once in a great while.
As far as the Quercetin goes, I've read the info. that you've provided. Since more frequent doses of mino didn't seem to help, and since I can't use my Benicar any more frequently until my insurance/self pay business sorts itself out (which I hope happens soon), I opted for the quercetin (even though it should be used later in the protocol), since it seemed to make the neuro symptoms tolerable. However, I'll quit using it when the Benicar Ship(ment) comes in, and will only use it after that when the IP symptoms are intolerable and need to get through the day. After trying it for a few days, I'm happy to report that it most definitely did not make my symptoms worse; it improved the symptoms, but I hear what you're saying and will use it with caution.
Symptoms today: as predicted, IP more strong on second day after 50mg. dose. I may wait to see if the IP gets stonger on the 3rd day (tomorrow), or may just take another dose today, as planned.
Thanks.
Anne
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Anne Scott
Member in Phase 3
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Posted: Sat Sep 22nd, 2007 06:44 |
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A little help, please:
I've spent hours reading "foods to avoid" and "why you shouldn't take supplements," etc. But I can't find anything that addresses Vitamin C in detail. I know whole foods are best and that "lemon-aide" concoctions are bogus and that one shouldn't take mino. with Grapefruit juice. However, I am allergic to citrus foods of all kinds and so it's very hard for me to get enough vitamin C unless I take a sago-palm vitamin C supplement. I know I can get some vitamin C from strawberries, kiwis, green peppers, etc. But it never feels like I'm getting enough through just a piece of fruit now and again, and I really crave this nutrient, it seems. WHat is the MP prevailing wisdom on how I should get enough vitamin C, if this vitamin (as a supplement) is forbidden? (I also read somewhere on the MP website that vitamin C "may" be involved in T helper cell transcription. "May" or "is"? I'm wondering why that's a bad thing...) Thanks in advance for any help in this matter.
Anne
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Posted: Sat Sep 22nd, 2007 08:11 |
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Supplementing a diet lacking in nutrition is sometimes necessary.
Should I take vitamins? states:
Vitamin C- Ascorbates promote the transcription of Th1 inflammatory mediators' and, therefore, Vitamin C (ascorbic acid) may prove to affect the immune system in a way that is counterproductive. Because Vitamin C affects the immune system in yet to be discovered ways, it is suggested to avoid supplementation. As little as 10mg per day is needed to prevent Vitamin C deficiency (scurvy).
See Appendix B-9. Food Sources of Vitamin C here for noncitrus sources.
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Anne Scott
Member in Phase 3
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Posted: Sat Sep 22nd, 2007 19:59 |
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| Many thanks. Sometimes when I'm browsing through the website I get lost in the forest because of the trees and don't see what is right under my nose. Thanks again.
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Aussie Barb
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Posted: Sat Sep 22nd, 2007 22:27 |
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| ABC of MP Links to all Essential Information under Alphabetized headings.
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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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Anne Scott
Member in Phase 3
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Posted: Wed Sep 26th, 2007 06:53 |
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Progress report
Benicar: August 30, 2007: 40mg. H6Q
Minocycline: Sept. 9, 2007, 25mg, H48Q
Minocycline: September 18, 2007: 50 mg H48Q
Quercetin: September 15, 2007: 20 mg. (once in a while)
Light Protection: Everything but face and hands (+ zinc oxide cream). House partially darkened.
Bolle Viper 100 series, medium or dark amber (18 hours/day).
Symptom Pattern for Mino, 25mg H48Q: Non-existent symptoms for 1st dose, then more symptoms 2nd dose (18 hours (afterwards) but resolving before next dose, then more and more symptoms that weren't resolving before the next doses at all (or resolving with extra doses of mino), until I had every symptom listed as follows: headache, chills, sharp pain in neck, cramps in hands/feet, brain fog, extreme muscle weakness (arms/legs), memory problems, agitation, wakefulness, eye sensitivity, skin sensations, anxiety, tiredness. Neuro Symptoms greatly improved with Quercetin, enough so that I felt I could move to the next phase of mino (50mg).
Symptom Pattern for Mino, 50mg: H48Q: I'm not sure. After 1st dose, strongest IP came on 2nd day. After 2nd dose, strongest IP started to move into the first day and then last all the way through the 2nd day, almost but not quite right up to the 3rd dose. After 3rd dose, strongest IP came on first day and lasted through second day and didn't abate at all before I should have taken the 4th dose. Therefore, I stretched out the dosing to 2 and 1/2 days. Waiting 2 and 1/2 days before the next dose has allowed the IP to resolve somewhat before I take the next dose.
Other things I notice: if I'm still somewhere in the midst of an IP, then my taking another dose of mino causes the IP/herx to screech to a halt for an hour or two, then it starts up again. In other words, if I take the mino too much "into" the middle of an IP/herx, then it seems to stifle my immune response. However, if I wait too long till the next dose (i..e, longer than 2 and a half days), then this also seems to have its negatives in that I'm not keeping up with the "killing" of the CWD Bb.
One more thing I notice: as far as strength of IP symptoms goes, I can lesson the symptoms a little bit if I watch my exposure to light and lessen my daily activities, or if I take the mino too soon into an IP response, or let the symptoms play themselves out across a few days, or take a little quercetin. However, if I compare all of the IP responses that I've had since starting the mino., they've all been pretty much the same: same intensity, same quantity and quality of symptoms, IP after IP. The strength of the symptoms hasn't seemed to change much: I can arrest them by taking mino too much "into" an IP/herx response, or I can let the symptoms "peter out" across 2 and a half or 3 days, (or some day I can try an extra half tab of Benicar when my extra Benicar is finally mailed to me), but regardless of these measures, I still seem to be experiencing the same quantity of "die off" and IP symptoms, which confuses me, as if I'm not making a dent (yet) into the overall CWD Bb load that I'm carrying, nearly 4 weeks into the MP. Is my experience typical, I wonder?
Thanks.
Anne
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Posted: Wed Sep 26th, 2007 08:56 |
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| From my perspective of several years on the MP, I can confidently say that four weeks is too soon to come to any conclusions.
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Anne Scott
Member in Phase 3
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Posted: Wed Sep 26th, 2007 19:20 |
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Dear Meg,
thanks for the reality check. (One always hopes, in the middle of a strong IP, that the "next" IP will be a little less strong, etc.....)
For all reading this: I've just put my Rife Technology Beam Ray up for sale. It's useless to me now, and I have a feeling that 10 months' exposure to these strong noble-gas lights was probably exacerbating my symptoms and/or encouraging the vit. D production in my body.
Anecdote: I've heard that someone got "cured" of Bb. by going to a doctor who gave her a slow-drip IV of arsenic for 40 days, which "made her feel so much better and with very few herx effects." Scary that someone would try such a thing....It can't be getting rid of the pathogens the way the MP is.
Note to Trevor: thank you for all of your persistence and good science. I'm finally making my way through all of the postings on minocycline, Lyme, etc. Tons of information there and I'm learning a lot. Question: if proteolytic enzymes (including Bromelain) can help "dissolve" the "biofilm" coating on some pathogenic organisms or help break up fibrin (where Bb can hang out), could it be possible that adding this to the MP (version 2, 3, 4, or some revised MP version in the future) might do some good? Would such an addition make the IP too strong, perhaps, or unpredictable? If you've addressed this before with someone else or in a thread somewhere, I'd be happy to read what you've already written.
Thanks
Anne
(To reduce white space at the end of a post, slide the space bar on the right all the way down and move your cursor to the end of the page. Or hit the end button or the down arrow to advance the cursor to the end of the page. Then, click backspace until the while space is gone.)
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