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Lonestartick
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| Joined: | Thu Jul 15th, 2004 |
| Location: | USA |
| Posts: | 47 |
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Posted: Wed Oct 27th, 2004 21:27 |
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Hi all,
I’ve been too busy to stop and write a proper update til now. I’m getting married soon and there is so much to do with the wedding. Although the wedding is good stress, it is still stressful. My last updates are at the link below, but I have since added Quercetin to the am & pm doses. http://www.marshallprotocol.com/forum20/730.html
I have been less able to reduce my schedule or my stress, but I have mostly been able to control the light exposures and diet. Still, the day I began my last period, I found myself with a raging sore throat and swollen lymph nodes. Although I covered up, I had spent 3 ½ hours in the sun in my car the day before. Setbacks during menses used to be how I would relapse and slip into chronic ill health in the past. The backsliding would start out with a cold or flu that I could never seem to get over completely.
With the wedding rapidly approaching and much to do, it was all I could do not to reach for high levels of antibiotics that were necessary in the past. I have been so committed to the MP because the low dose protocol makes sense to me on so many levels. I’ve been fortunate, because I have been feeling very good since my hormones finally adjusted to the Benicar. However, when push came to shove, I couldn’t help but want to treat aggressively the way my old LLMD would have while I was still seeing him.
I was really torn when it came to trusting the MP or doing what I have had always been forced to do in the past in order to cope. In the end I realized that I am still very skeptical about whether or not this is going to work for me in the long haul. Because I committed to the process, good or bad, I wanted to see what would happen. I stuck to the MP and did NOT give in to temptation to treat aggressively of to take the cell wall inhibitors that have always made me feel so good so fast. I stuck to the 40mg Benicar q6h and the 100mg Minocin qod. Due to the deep fatigue and the flare there were a few days when I doubted the sanity of that approach.
Low and behold, that darned Trevor was right again! I’m still stunned. (He & the sarc patients have so clearly described everything I find myself experiencing.) My glands were so swollen, my joints were aching, my chest was tight and my heart was really flip-flopping around. My throat became so red and sore that I was so exhausted that wanted to sleep around the clock but my schedule didn’t allow it with the exception of booking quality sleep at night. It felt like one of the nasty Strep infections I used to experience frequently in past, but I was not yet able to get into see my new doctor so I have no way of documenting that.
I must say that I’m amazed that I recovered so quickly and so completely. The setback was just a tiny blip on the radar screen. I am once again feeling better than ever. We’ve had a number of low-pressure fronts, lots of changing weather and the full moon and all is well. I had several bad days out of a spectacular month. The experience suggests that I'm definitely on the right path.
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F age 41 Began MP 7-26-04 Dx: neuro-borreliosis (chronic late-stage Lyme disease) conf by several labs, with co-infections (Bartonella, mycoplasma, Babesia); 6 yrs prior abx (17mo IV) Meds: Thyroid, 40mgBeni qid, Phase 3
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Reenie
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| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
| Posts: | 3373 |
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Posted: Wed Oct 27th, 2004 21:59 |
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Hi Lonestar,
Thanks for taking the time to give us all an update. 
Congrats on the big day. Keep on keeping on... and letting us all know how you're doing. It's encouraging for ppl to read and see that this MP, when followed, really works!
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
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Posted: Thu Oct 28th, 2004 01:33 |
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Congratulations LST 
Thanks for posting
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, & Happy Days, 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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Lonestartick
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| Joined: | Thu Jul 15th, 2004 |
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| Posts: | 47 |
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Posted: Fri Nov 5th, 2004 18:38 |
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I will never personally claim that I am recovered until I am in full remission without drugs (including Benicar) but I am feeling great. That alone is a miracle. This seems to be more than just a window into which I can see my healthy future. I’m finding myself able to enjoy that healthy future now in ever increasing blocks of time while my body is still overcoming multiple tick-borne infections in ways that were never possible in the past. I feel that I am no longer traveling the old “mobius strip” where I have been stuck covering and recovering the same ground over and over again. I feel that I am finally on an upwards spiral that is reminiscent of drives through beautiful winding mountainous roads. There are peaks and valleys on the way to the top and sometimes I have to shift into low but I’m on the way to the top as never before.
I can’t help but think that we chronic long-term patients become so accustomed to having to compensate and push through things that we forget what real health feels like. I know that I’ve seen numerous patients in the Lyme & CFS/FM forums who claim they are well when it is obvious that they are merely coping within the limits their diseases dictate. It seems as if we forget what real health is like and any significant improvement is mistaken for total wellness. I’ve seen so many patients shout that they are healthy and then chalk everything up to Candida or some other new and different opportunistic infection in the same breath. I don’t understand how they can equate real health with the replacement of one diagnosis with another new and different one.
Now that I am discovering what it is like to really feel healthy the majority of the time, I see the difference in just being able to cope within the scope of my own narrow physical limits versus feeling really good and enjoying consistent energy.
There have been so few times in my life where I’ve been truly symptom free and actually able to schedule many things and then keep up with all that is on my schedule without worry. Now, for the most part, I find that I’m seldom exceeding my limits. The difference in my health now versus when I was at my very, very best during traditional Lyme therapy defies description. In the past I would have easily gauged my progress as being 75-80% of normal. Now I see how flawed those numbers were. They were skewed because I had forgotten what it was like to feel really healthy for so long that I had begun living my life thinking that, “if this is a good as it gets, I can cope with that because it’s so much better than it was before.” The quality of my life now is wonderful. I am no longer just hoping for remission. I’m feeling very optimistic about a complete recovery.
I’m consciously trying hard not to push to beyond my limits, but this is hard because I don’t know where they are anymore. I no longer bump into them on a daily basis in the obvious ways that I did in the past. When I do, I’m usually able to recover within a single day. Recently, I recovered from a very active week full of early mornings and late nights with a single night’s rest. That was shocking because that has NEVER happened before! I’m slowly morphing into a morning person without struggling to do it. (I noted this several weeks prior to the recent daylight savings change.) I must still avoid the light and the sun carefully but the trade off in order to enjoy consistent seemingly boundless energy with almost non-existent symptoms is a no-brainer. (Thank you Reenie for chiding us all until we made the connection. You and Aussie Barb have been such wonderful cheerleaders. Without you, I would still be short-circuiting my recovery without even realizing it.)
On the down side, I feel sort of “wired.” These days I go nuts when my schedule doesn’t allow me enough time to enjoy the heavy exercising my body now craves regularly. I would be inclined to confuse this with the infrequent semi-manic states that I have experienced in the past except my cognitive function feels good and I am not feeling at all impulsive when it comes to finances or other decisions. Is this how the healthy population lives? I don’t know because I have nothing to compare it to. I first became ill after a tick-bite at the age of 9 and my life detoured through Hades in the years that followed. Is this what it feels like to actually have energy? (I gave up coffee and I don't even miss it. I guess I don't need it any more.)
I hope that I’m not suddenly going manic or nuts. I hope this is real and lasting. I would hate to become a “Lunatick.” I sense, though, that the future will demonstrate that this time was when I finally became just another lucky Star without the Lone in a dominant position and without the parasitic Tick attached to the end. I will be ready to start phase 2 after the wedding.
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F age 41 Began MP 7-26-04 Dx: neuro-borreliosis (chronic late-stage Lyme disease) conf by several labs, with co-infections (Bartonella, mycoplasma, Babesia); 6 yrs prior abx (17mo IV) Meds: Thyroid, 40mgBeni qid, Phase 3
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Reenie
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| Joined: | Wed Jul 21st, 2004 |
| Location: | Phoenix, Arizona USA |
| Posts: | 3373 |
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Posted: Fri Nov 5th, 2004 19:35 |
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Lonestar,
Thanks so much for the words of encouragement to all.
I know for me, to be able to read how you feel now, helps me KNOW that what I'm going thru on the MP, will all be worth it.
IMO, even if I never get to a fully "recovered" state, w/o Benicar, but have to live in a feeling of wellness, as in a "recovering" state, w/Benicar, this would be FINE w/me. I'm hoping for a full recovery too, but am grateful for what seems to finally be a light at the end of that infamous tunnel. Either way will be fine w/me. Time will tell.
Congratulations to you and your new DH.
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Lonestartick
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| Joined: | Thu Jul 15th, 2004 |
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Posted: Tue Nov 23rd, 2004 18:39 |
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My struggle adjusting to the MP “lifestyle change” and my conclusions about it.
I feel guilty for admitting that I used to feel a little grumpy and insulted every time the moderators came along to ask me if I was wearing my NoIRs and avoiding the sun. I felt that there was so much that I had already given up. Because I felt I was complying to the best of my abilities, I wanted them to lay off. It was only after I had made a certain amount of progress and I accidentally slipped up that I really observed “light flare” symptoms.
After that, it was easier for me to comply and to understand why they kept harping on this one aspect of the MP. (I grew to appreciate the question.) Now I feel irritated and insulted by the people who just don’t want to try this aspect of the protocol and who harp on that because anything inconvenient shouldn’t be necessary for them.
Because I searched this protocol out myself and because studied TM’s theory thoroughly before beginning, I didn’t allow myself to get too angry or sidetracked about the light avoidance. It made perfect sense that one would have to avoid all sources of D given that dysregulation of D-metabolism is the basis for TM’s inflammation model. It was in the materials that I read prior to deciding to try this.
Only time will really tell just how that mechanism works, but after I thoroughly read and digested his papers, I felt inspired to try this protocol as he suggested without modifications. Based on my own experience, I suspect that he is really onto the mechanism and that the process will turn out to be much the way he has described.
Still, I do hope and pray that there will be a way for this to be adapted in such a manner that people who must work and be out and active will still be able to make progress or at least halt their disease process safely, even if it means slower progress. For the time being, Moskovitz might be able to work with those who aren’t willing to comply with the MP but who want something similar primarily for symptom relief. I think it is to early in the MP for people to expect that they shouldn’t have to comply with the light and sun avoidance in order to pursue the MP. Right now we need to focus on how just how the MP works in patients with various disease histories. We can only observe that when they are in compliance.
Before I saw progress and felt the light-flare connection myself, I had to constantly remind myself that it was out of my own desperation and a lack of any better options that I chose this protocol. TM didn’t contact me and ask me to volunteer to be a lab mouse. I found him and this board. Actually, I first began reading about the MP and studying it at the old Sarcinfo board, well before this forum or any other MP forum were ever created.
While reading at Sarcinfo, I saw people who I felt certain would have tested positive for Lyme or qualified for CFS. Their symptoms were so close to mine. I focused on patients whose symptoms were closest to my own. Their progress was sometimes slow and tedious, but their progress was still amazing. I am so grateful to them.
I had the good fortune to meet one of these patients this last month. She was given a death sentence and, not only did she survive, she has thrived. Honest to God, I think some of the criticisms in other groups are silly and shallow when it is an absolute given that this woman’s life would NOT exist at all without the MP. Not only is she alive, her quality of life is really good.
She certainly seems well enough to go off the MP, but why should she experiment with her health after only 2 years, just to satisfy the likes of others (yahoo) who will not be satisfied unless they can pick apart each individual case and declare that it was neither a success nor related to their CFS or Lyme simply because the lifestyle is inconvenient and doesn’t suit them? She is able to lead a full and rich life now. The particular people who are continuing to blast this do not yet have the health to have full and rich lives and they do not yet have a better protocol to offer. It’s obvious to me which group of patients I want to listen to.
I’m finally doing well and making real headway after having spent the longest time searching for a real path out of this. I have spent incredible amounts of money looking for answers that didn't work. This is working and it’s the most affordable thing I’ve ever done! When I reach the 2 or 3-year mark, I’ll decide for myself if I want to go off this to see if it is a real remission or lasting cure. I will make that decision selfishly and not for anyone else simply because they feel a need to pick this apart thread by thread despite the fact that they have nothing better to offer in it’s place.
In the meantime, I think that we would all do well to remember that we are the ones who are seeking this out. We should examine it and decide for ourselves if it is worth following in the form in which it exists now. If you find that doesn’t make enough sense to invest some real time and effort doing it, then maybe now is not the right time for you to pursue it. If you want a quick fix, this definitely isn’t it and I would advise you – actually, I would implore you to go elsewhere! Remember, this is an experimental therapy based on an off-label use of a drug. I happen to be very impressed with it and I’m optimistic about it based on the Sarcies as well as my own progress. I think Trevor is really onto something! For that reason, I feel a sense of responsibility to follow every aspect of the protocol so that my progress (or my lack of progress) might help other patients in the future.
Once I made the decision to commit to the MP, I just hunkered down and did it. I didn’t post for the first two months because I was too busy dealing with symptoms and my own doubts – fears and doubts that I did not want compounded by the doubts of others. I decided that I wouldn’t post unless it was a real, authentic emergency. I worked on trying to unlearn some of the things I had believed in prior to this and I focused on giving it a fair time frame in which I felt comfortable trying it for myself. So, if you aren’t comfortable with it, don’t try it. If you aren’t willing to comply, then don’t do it. It really should be as simple as that.
If you want to ask me a real questions about why I’m doing it or what my experiences have been on it, please feel free. If you want to pester me with question after question asking me to justify the need for you to comply with light, sun and D avoidance, don’t bother: You aren’t ready to do it.
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F age 41 Began MP 7-26-04 Dx: neuro-borreliosis (chronic late-stage Lyme disease) conf by several labs, with co-infections (Bartonella, mycoplasma, Babesia); 6 yrs prior abx (17mo IV) Meds: Thyroid, 40mgBeni qid, Phase 3
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Lonestartick
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| Joined: | Thu Jul 15th, 2004 |
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| Posts: | 47 |
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Posted: Tue Nov 23rd, 2004 18:47 |
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So much has changed. It’s only after I got out my journals and sorted through the last couple of months that I see how many symptoms have fallen away. The biggest problem symptoms that continue are that I will have short-lived episodes of IBS anytime I have accidental light exposures of length. They are intense but they go quickly. It is the strangest thing. (I lived with IBS for years; so nice it’s almost gone.) Accidental light can make me feel nice and spacey and quell other symptoms, but not this one, which it causes. It’s great incentive for me to “stay away from the light.”
Before I started the MP I was having floaters again and eye pains – a common Lyme symptom for me. All my other symptoms cleared up early on, but the floaters lingered. I also experienced watery eyes that would leak for days, sometimes one eye, sometimes both. Then my eyes become dry and itchy. My eyes itched for days and days and every once in a while I would feel the old “squiggly-s” where it felt like stuff was crawling across my eyes. That’s been gone for a couple of weeks. If my eyes itch at all now, it’s only for a few intense minutes at a time.
My eyes feel normal and they work better than ever. The first month on the MP, I would sometimes have such deep fatigue that I couldn’t focus. Now I can read easily without my reading glasses – That’s nice because I wear NoIRs. My night vision is great. I went out on a night with no moon, some cloud cover with stars peeking though. It was so easy to see. When visited the country, I went out at night to watch the deer. It was amazing to see how many things I could see well without ever needing to turn my flashlight on. I didn’t think about it until I realized I navigated the dark, winding cliff side path without the aid of a light. (I usually wouldn’t feel comfortable doing that because of snakes, but I could see better without a flashlight.) In the city, our neighborhood is not well lit and hardly anyone drives here at night. It was only after somebody commented about it that I realized I like walking in my lightest NoIRs at night. If I didn’t have to go to bed early to keep peace in the house, I would make a lovely vampire.
Herxing seems non-existent now, as do most symptoms. I began
phase 2 yesterday (11-22-04)
so I won’t know for at least 5 days how the Herxing goes. If it is too much, I will back off to phase 1 and begin phase 2 after the holidays are over.
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F age 41 Began MP 7-26-04 Dx: neuro-borreliosis (chronic late-stage Lyme disease) conf by several labs, with co-infections (Bartonella, mycoplasma, Babesia); 6 yrs prior abx (17mo IV) Meds: Thyroid, 40mgBeni qid, Phase 3
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Big John
Guests visiting Phase 1/2/3
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Posted: Tue Nov 23rd, 2004 21:24 |
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Wow Lonestar!
What great and inspiring posts! Glad MP has made such a big difference in your life! Thankyou for taking time to document this. MAde me all warm and fuzzy inside, not to mention inspiring me to plug along!
Thanks Again!
John
See also Lonestartick's eloquent essay
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Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
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