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joannem
Member in Phase 3
| Joined: | Tue Sep 19th, 2006 |
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Posted: Thu Dec 21st, 2006 11:25 |
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| 12/21/06 - I started the MP five weeks ago with Bencar and 50mg mino. The reaction has been as expected, with most of the herx reactions being similar to symptoms that I have had from the disease, but more intense. I became sick about 5 years ago - extreme fatigue, muscle and joint pain, mental confusion, headaches, and all kinds of abnormal lab work. My doctor diagnosed me with fibromyalgia and put me on Prozac and muscle relaxants. This didn't seem right to me so I kept looking for answers. About 2 years into the illness, I was treated by Dr. Ritchie Shoemaker for probable Lyme and unspecified biotoxin exposure. He treated me with doxycycline and a long course of cholestryremine. He also treated me twice for MRNStaph. I had an amazing turn in my health and felt great. Then about a year later the symptoms started returning in a milder form. I saw doctor Shoemaker a number of times and my labs indicated problems - CRP still high, leptin high, ALT high, weight gain with storage of fat in liver, low MSH. I also had problems such as poor recovery from exertion, breathlessnes, low libido, constant hunger, and sleep problems. Cholestyramine helped a little. I was at a dead end. Because my symptoms were milder and seemed to be cyclical, I was able to function normally and feel okay most of the time, but was concerned about how my high leptin, low MSH, high CRP and extra weight would affect my long-term health. After learning about the MP, it seemed to make sense based on what I knew already about my illness. Since my D-1,25 is 58 and I am having very recognizable herx reactions to the treatment I am feeling pretty positve that this is going to turn out well. I have found a doctor close by who is highly knowledgable about the MP, so I think I am on the right track. I am also fortunate to not have photosensitivity to indoor light, so I can function pretty well so far. I plan to post once a month.
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Lyme, strong family hx breast cancer, 125D58, MP 11/06, Ph2 3/07, Ph3 9/07, NoIRs, cover up, low lux home, 2/08 25D<7, 1,25D=31
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P.Bear R.N.
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| Joined: | Fri Dec 3rd, 2004 |
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Posted: Thu Dec 21st, 2006 17:26 |
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Joanne, Welcome to phase one. In hindsight it would have been better to start on 25 mg of the Mino; as the phase one guidelines were written that way for good reasons. I suspect your hight 25-D protected you from an uncontrolled herx. I would not worry about your out of range lab levels too much. I suspect bringing down the 1,25-D will have a positive influence on many the hormonal imbalances that show up on Shoemaker's uncommonly tested metabolites; or at least the completion of the MP will. I suspect that alpha-melanocyte stimulating hormone may be regulated in some way by 1,25-D; and more data regarding levels of the two hormones in recovery would be of interest to me.
I would not be surprised if you did develop photo-sensitivity as your 25-D comes down. It was pretty high as you know. So I would still be careful with protecting your eyes. You may be interested in posting your D data in the section to do so for the expert analysis.
good luck in your MP journey, P.B.
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Thu Dec 21st, 2006 17:51 |
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Joanne
Thank you for posting.. PB has said it all.. thanks PB...
Please check all precautions / instructions in the Phase One Guideline with your Dr. Some have it printed to check with regularly. It is very important that you and your Dr know to follow the essential aspects and guidelines as written for safety and efficacy of treatment..
What are the recommendations regarding sun/light exposure?
Photosensitivity During Recovery From Th1 Inflammatory Disease
What to include in your preliminary test result reports.
Dr. Marshall has created a diagram summarizing some of the key relationships between the body's hormones and 1,25-D.
You can access it at http://autoimmunityresearch.org/hormones.pdf
Do I need to get my 25-D down before I start the MP?
How often should I test D levels? What are the target numbers?
Dr Marshall : "The 25-D seems to be the most critical factor as to whether the immune system is able to start working. Any level of 25-D above about 20ng/ml is likely to be acting as an immunosuppressant, with an action very similar to that of corticosteroids.
The stores of D gradually drop, it just takes time. Meanwhile, if you are responding OK then you will be progressing fine. Just be aware that one day the 25-D will drop, and as it drops your symptoms may increase, and you may need to reduce the abx dose. So it is best to have the D measured every 2-3 months." Rx is checking your diet for D and if using any supplements that may contain D. (may be listed or unlisted) and protecting from the light.
The D ratio was only meaningful before the MP is started. There is no need to retest the more expensive 1,25-D..
We are happy to assist you in any way we can.
all 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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joannem
Member in Phase 3
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Posted: Thu Dec 21st, 2006 18:01 |
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| Thanks for the reply. I am using Noirs and use the darker ones outside all the time with cover, a hat and sunscreen. I also have the light ones for indoors but rarely feel the need to use them. It sounds like I may need them in the future as my D level drops. We shall see. I am following all the recommendations for diet as well. Last edited on Thu Dec 21st, 2006 18:02 by joannem
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Lyme, strong family hx breast cancer, 125D58, MP 11/06, Ph2 3/07, Ph3 9/07, NoIRs, cover up, low lux home, 2/08 25D<7, 1,25D=31
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joannem
Member in Phase 3
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Posted: Fri Dec 29th, 2006 14:36 |
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| 12/29/06 - I am protecting my eyes even though the light doesn't seem to bother me indoors. I am noticing an increase in sensitivity to sunlight and headlights at night, so I expect that will continue as my D levels drop. I always wear Noirs, sunscreen etc outside. I have been on 50mg for 6 weeks and think I am ready to increase to 100mg. For the entire last week I have had little to no herx reaction except some fatigue and muscle and joint pain, and periodic numbness in my arms and hands at night. It is mild and very tolerable. I have had a little trouble maintaining my diet through the holidays, mainly struggling with the urge to eat Christmas cookies. I have completely avoided milk and anything supplemented with D, seafood and fish, and eggs (except for the cookies). I am also having a harder time working out - just a little tired and recovery is harder. I was originally advised to start at 50mg of mino with the thought that I would cut back to 25 depending on my reaction. The 50mg seemed to work fine, perhaps because I am not too progressed in the disease or maybe because I had other previous treatment that reduced toxins. I will start 100mg on Sunday 12/31 and see how the reaction is. Hopefully it will be tolerable and I can maintain that dosage.
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Lyme, strong family hx breast cancer, 125D58, MP 11/06, Ph2 3/07, Ph3 9/07, NoIRs, cover up, low lux home, 2/08 25D<7, 1,25D=31
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
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Posted: Fri Dec 29th, 2006 16:35 |
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Thank you Joanne
The mino increase from 50mg is to 75mg.. thanks..
Please check all precautions / instructions in the Phase One Guideline with your Dr. Some have it printed to check with regularly. It is very important that you and your Dr know to follow the essential aspects and guidelines as written for safety and efficacy of treatment.. thanks..
and I'm eager to get well. How can I speed up my progress on the MP?
LH1953 wrote: Lyme Disease I'm here to help! Lori (Member Advocate)
Are there any Guidelines on Exercise & the Marshall Protocol?
all 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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joannem
Member in Phase 3
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Posted: Fri Dec 29th, 2006 17:34 |
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| Thanks for the response Barb. The doctor I am seeing indicated that 100 mg was the next dosage and I had not read the protocol carefulyl enough. It is a lot of reading and although I have spent a lot of time on it, I am missing some key items. I feel lucky to have found a doctor nearby who is even willing to administer the MP, but I understand your concern. I will try the 75mg first and see what happens. The doctor is leaving the ramping up of mino to me based on how I feel anyway so I think it is best to follow the protocol. I am a little surprised how on top of this you are, and appreciate the guidance. I want this work and am glad that you monitor the site so carefully.
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Lyme, strong family hx breast cancer, 125D58, MP 11/06, Ph2 3/07, Ph3 9/07, NoIRs, cover up, low lux home, 2/08 25D<7, 1,25D=31
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joannem
Member in Phase 3
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Posted: Tue Jan 9th, 2007 16:41 |
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1/9/07 - I have updated my signature and have started 100mg mino. I have not had anything more than mild reactions since moving to 75mg except a short flu-like response for a day. All along herx reaction has been as expected and described by others, but tolerable. Some days are great - some strange and changing reactions, but nothing lasts too long. Most frequent reactions are joint and muscle pain, fatigue, loss of feeling in extemities as well as pins and needles feeling, swollen glands in throat, and increasing photosensitivity. Other temporary reactions have been stomach distress and reflux, chills, low-grade fever - those are gone now. I feel well enough to work, and to do all of my normal activities in a limited fashion. I will see my doctor in 3 weeks to review my possible readiness for phase 2, including a D test. I will complete the questionaire after that to determine if I should move on.
I am also convinced that my husband has this. He certainly has many symptoms. I am hoping my treatment is successful so he will feel more confident to pursue it. I would appreciate comments on the possibility of transmitting this from one person to another through sexual or other contact. Ever since my Lyme symptoms appeared he has been about a year behind me on developing the same but milder symptoms - joint and muscle pain, extreme pain in bottoms of feet and hands, migraines, sleep disruption, gastrointestinal problem, chronic sinusitis and sinus infections, extreme fatigue, etc. He is in the landscaping business and is in the sun a lot as well. I am concerned for him, and also that I will recover and then have reexposure. Comments?
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Lyme, strong family hx breast cancer, 125D58, MP 11/06, Ph2 3/07, Ph3 9/07, NoIRs, cover up, low lux home, 2/08 25D<7, 1,25D=31
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Aussie Barb
Member in Phase 3
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Posted: Tue Jan 9th, 2007 18:51 |
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Thank you Joanne
re "11/16:1,25D=58.3 & 25D=56.2"
It will be interesting to see where the D test is now.. to make sure it is near or below the therapeutic level of 12ng/ml. There is no need to retest the more expensive 1,25-D.. How often should I test D levels? What are the target numbers?
We encourage you to send an email for the Questionnaire as soon as you wish to fill and return so that you have plenty of time to read the Information.
and when you are given feedback and access to the Information in the Phase 2/3 Forum -
We encourage you to begin a new progress report there to discuss the Staff recommendations as to which phase and which meds and dosing are most suitable to your individual situation, in preparation for discussing with your Dr so s/he can write the scripts. Thank you..
re Family: see Personal, Family, Relationship Tips for all the links..
What is successive infection?
Will re-infection occur if my partner or family members are not treated?
Can reinfection occur once we are healed?
Thank you, all 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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joannem
Member in Phase 3
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Posted: Sat Jan 13th, 2007 23:12 |
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Last Sunday I started out with a sore throat and thought it was a herx but it turns out I had the flu since the symptoms continued, worsened, developed into congestion, fever and chills-not a fun thing when you are herxing on top of it. It was a very bad week but I decided to continue my meds and I did get through it. I have been exhausted and resting a lot and now I am feeling better except for a grand finale of cold sores, something that always happens when my body is stressed. I used limited dosages of guiafenesin(Mucinex), Sudafed, and Tylenol as I needed it. I searched the site and as far as I could tell from the links on meds not to take, they were all okay. My herx reactions this week seemed seperate from the flu symptoms, as they came and went. Same old thing - sore feet, stiff joints, pain in neck and upper back, arms going numb, light sensitivity, sudden severe reflux, muscle fatigue. I am really trying to stick with the food limitations and staying out of the sun. It will be interesting to see my D results at the end of the month.
I read more about the family connection from the last correspondence. WHen I look at my birth family, I really have to wonder when this all started. Here I am at age 52 with Th1 disease symptoms, my sister 2 years younger died this year from cancer, my sister 3 years younger has Crohns disease, my sister 9 years younger is allergic to everything under the sun. My mom is diabetic and severely arthitic. Her whole side of the family is a medical catastophe - arthritis, diabetes, heart disease, etc. Some day I hope we will know how this bacterial load we carry goes from tolerable to terrible. I think the Lyme exposure was just the tipping point for me, but I have been heading for this a long time.
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Lyme, strong family hx breast cancer, 125D58, MP 11/06, Ph2 3/07, Ph3 9/07, NoIRs, cover up, low lux home, 2/08 25D<7, 1,25D=31
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jrfoutin
Research Team
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Posted: Sun Jan 14th, 2007 00:14 |
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Joannem,
I've had cold/flu early in the MP that lasted longer than a couple of days. But the longer I've been doing the MP, the more I have wondered about whether I was having a really huge immunopathology moment, or whether there was a virus that jumped into the mix just when I was making some headway, or what. So it doesn't hurt to write it into post as an event of note.
As for family, it is very common at some point in the MP for all of us to look about our families and see Th1 once we know what the signs are, and how related much of Th1 symptoms are.
You might enjoy this link:
Some of my family members appear to have Th1 inflammatory symptoms. What should they do?
Best wishes--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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joannem
Member in Phase 3
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Posted: Tue Aug 19th, 2008 00:03 |
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MP meds: Phase 3 Cycle 32 Day 1 Benicar 40mgQ8H Phase 3 ABX
Non-MP med use: occasional use of Tylenol or Advil for pain, Pepcid for reflux
Light: Avoiding sunlight when possible, use Noirs, covering up, using Neutrogena 85 sunscreen all over daily. Just returned from a week at the beach, so had more sun than usual.
Symptoms: Took a 3 week break from ABX. Had surprising amount of IP during this time, including: General body pain/achiness/stiffness in joints and muscles/arthritic feeling in joints -5, numbness and pain in soles of feet - 4 in AM, extreme pain in neck and upper back - 8, reflux -3, fatigue - 2, paresthesia during the night - 5, cold sores - 4, headache -4, tingling through out body like electrical charges mainly at night-4
Phase 3 - Previously completed 31 cycles with different combinations and dosages of Phase 3 ABX
The 3 week break from ABX (after 21 months) was surprisinging rough. Although the IP wasn't intolerable, it was the worst I have had for many months, mainly because there were multiple issues. The main problem was the body stiffness and neck and back pain, although I had a good bit of energy and slept well. I have the feeling that my immune system continued in high gear after stopping the ABX which I guess is a good thing since that is the goal of the MP. I also realize that extra sun may have something to do with the reactions, but I was pretty careful -wore 85 sunscreen with 3-4 application a day, wore sunscreen clothing under an umbrella, hat and Noirs. I did spend about 30 minutes a day in the water riding boogie boards and body surfing (with those sunglass tied on tight!). I guess the fact that I could do that at all is good news Our beach house had 48 steps from bottom to top and I managed to navigate them many times a day with no problems (big improvement since last year) as well as carry chairs and umbrella. I also went on some long beach walks just before sunrise, free of sunscreen and cover - what a great feeling. Today I am starting a new ABX combo, with two at half dose and reserving the third for a couple of weeks until I see what happens. It was a great vacation and now I will have the chance to rest and stay indoors more as I try this new combination. I do realize from this whole experience that although I have made big improvements, I think I have a ways to go before I am done with the MP. Once I am done with this combo I also want to try a couple of other cobinations as each seems to get a different reaction. I figure that will take another year to get through all that. I will get a D test in late September to make sure it is still under control. I will check in every 10 days since I am starting new ABX. J
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Lyme, strong family hx breast cancer, 125D58, MP 11/06, Ph2 3/07, Ph3 9/07, NoIRs, cover up, low lux home, 2/08 25D<7, 1,25D=31
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Lyme, strong family hx breast cancer, 125D58, MP 11/06, Ph2 3/07, Ph3 9/07, NoIRs, cover up, low lux home, 2/08 25D<7, 1,25D=31
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joannem
Member in Phase 3
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Posted: Sat Nov 15th, 2008 19:07 |
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MP meds: Phase 3 Cycle 39 Day 1 Benicar 40mgQ8H
Non-MP med use: occasional use of Tylenol or Advil for pain, Pepcid for reflux
Light: Avoiding sunlight when possible, use Noirs, covering up, usingNeutrogena 85 sunscreen all over daily.
Symptoms: Pain in neck and upper spine and back - 2, muscle fatigue -2
I am feeling really good today and have for the last couple. My sleep patterns are improving and I am feeling more rested. I have lost 12 pounds over the last two months. The back pain and muscle fatigue come and go but recently have been going more than coming! If this cycle continues like this I will switch abx and try that for a while. Not sure what the D25 is doing but all I can do is try to avoid sources of D and hope for the best. J
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Lyme, strong family hx breast cancer, 125D58, MP 11/06, Ph2 3/07, Ph3 9/07, NoIRs, cover up, low lux home, 2/08 25D<7, 1,25D=31
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joannem
Member in Phase 3
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Posted: Wed Jan 14th, 2009 12:11 |
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Alumni Update
MP meds: Phase 3 Cycle 45 Benicar 40mgQ8H
Non-MP med use: occasional use of Tylenol or Advil for pain
Light: Avoiding sunlight when possible, use Noirs, covering up, usingNeutrogena 85 sunscreen all over daily when going outdoors
Symptoms: Pain in back - 1-2, general fatigue/poor stamina -2, sleep problems - 1, excessive hunger - 4
Nothing has changed this entire last cycle except a slight increase in intensity of IP. I have started going to the gym again 3 times a week, just walking 30 minutes on the treadmill or something similar.
Other than the lingering IP noted above nothing else is happening. The sleep issue is better and I am at least getting 7 hours a night. I have had a return to ravenous hunger and have gained back some of the weight I lost in the fall. I am going to work on this as it is mainly a carb craving that I know is not good for me.
I am continuing to see a chiropractor once a week as it keeps the back pain in check. I also see a massage therapist once a month which gives me relief as well.
I am tempted to ramp up the ABX more quickly to get more response but I am enjoying feeling good enough to have long busy days. In the last 2 months I have also finally felt well enough to do things in the evening without feeling like I'm going to collapse when it's over, so my ability to enjoy hobbies and social events is much better. J
February 09:
Non-MP med use: occasional use of Tylenol or Advil for pain
Light: Avoiding sunlight when possible, use Noirs, covering up, usingNeutrogena 85 sunscreen all over daily when going outdoors
Symptoms: Pain/tension in back - 2, sleep problems - 2, excessive hunger/carb cravings - 2, return of paresthesia in extremities during the night - 2, general stiffness/achiness - 2, numbness in soles of feet - 1
Same group of IP symptoms continuing at a low level even though ABX upped to max dosage. I have been extremely clear headed and productive and have days with amazing energy. I am approaching what I would consider normal. Once I can exercise regularly with no problems, I will be happy. J
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Lyme, strong family hx breast cancer, 125D58, MP 11/06, Ph2 3/07, Ph3 9/07, NoIRs, cover up, low lux home, 2/08 25D<7, 1,25D=31
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joannem
Member in Phase 3
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Posted: Sat Oct 3rd, 2009 00:07 |
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Alumni Update
MP meds: Phase 1 Day 30 Benicar 40mgQ6H Mino 75mg (every other day)
Non-MP med use: Advil for pain
Light: Avoiding sunlight when possible, use Noirs, covering up, using Neutrogena 85 sunscreen all over daily when going outdoors
Symptoms: none
In June 2009 I took a break from the MP after 31 months. I was in Phase 3 at the max dose for 3 ABX and had also tried various ABX combinations and extended dosing. In late May, I began ramping down zith and lowering dosages and by the end of June was using Benicar only. AT the end of July I stopped Benicar too because I felt the need to see where I was. I also started an exercise program on June 1 because I felt like my fitness level was deteriorating. The outcome has been interesting and exciting. I started up the MP again in early September, not so much because of feeling bad, but out of curiousity to see how I reacted. Here is a summary of what I experienced:
1. In ramping down meds, I had definite but small reactions, including fatigue, paresthesia in extremities, skin sores on arms and legs, and sleep distrubance. This subsided after about a month.
2. On June 1, I walked slowly on the treadmill and my heart rate went up to 180 almost immediately. Four months later, I am spending 6 hours a week exercising, including running, swimming, biking, rowing, elliptical, weight lifting and aerobics class. I feel amazing and never thought I would be able to do this again. I have also lost weight.
3. I am starting back at the beginning with the MP, and being careful. First I took Benicar only, then 25 mg mino every other day. I am up to 75 mino and throughout have had a slight herx reaction about 12 hours after taking ABX. It is mostly body aches - sleep is good, am continuing exercise with no problem, no light sensitivity, or any other reactions I have had previously. I am follwoing all other protocol recommendations for meds, food, etc.
4. I plan to continue on at a slow pace to Phase 2 and 3 and will cut the exercise if I start to have fatigue problems.
It was nice to take a break and I felt really good, even with sun exposure. I had lab work done in September, and my cholesterol is high (252) but triglicerides were better (175). Also liver function was out of range (ALT 47). I am having CRP checked next week. I think these are indicators that I am not done with this and need to continue until lab work stays in the normal range.
J
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Lyme, strong family hx breast cancer, 125D58, MP 11/06, Ph2 3/07, Ph3 9/07, NoIRs, cover up, low lux home, 2/08 25D<7, 1,25D=31
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laura1814
Member in Phase 3
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Posted: Sat Oct 3rd, 2009 04:24 |
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| Thank you for sharing your experience with taking a break and restarting! I have wondered about trying that at some point. I sort of did it just with Phase 3 this summer too. Good luck and I hope you are able to keep up your activity level!
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CFS, EBV, PCOS, POF, TMJ, hypoglycemia, hyperlipidemia, MP Ph1 1/08, Ph2 4/08, Ph3 1/09; enzymes, & ranitidine PRN, NoIRs, low lux home, limited outings, covered up, 1,25D=37, 25D=9.
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