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Caitiegirl
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Posted: Mon Nov 12th, 2007 20:10

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Previous Post http://www.marshallprotocol.com/forum19/10577.html Posted by Mindy mother of Caitlin (17)

MP Meds: Benicar 40mg q6h, Mino 25mg EOD (11/11/07)

Non-MP Meds: None, no Supplements

Light: She has had no appreciable light exposure until Tues. when we saw the Opthalmologist. She was unexpectedly exposed to sunlight for maybe 2-4 minutes walking between buildings. I think she also grabbed the 10% NoIRs instead of 2%. She did have both with her. Forgot to cover her head also. She used hat, NoIRs, Zn cream and gloves for the (30 min each way) car ride. She is sleeping during the days and her waking spells are late evening and night. She is still sleeping a lot.

Symptoms: We had planned to start mino on Wed. but the light exposure left her unusually exhausted for about 3 days. She slept 20 hrs/ day on Wed & Thur. She also had stong muscle and joint pains as well as her everpresent headache (rated 7 over weekend). OTC meds have never helped so she didn't try them. She has also complained of her heart feeling "weak and squishy", feeling her heart beat in her stomach, and extreme fatigue. Last night her vision blacked out and she felt a heavy painful weight on her upper back and the back of her neck. We tried the first mino (before blackout) last night but she threw it up so I do not know if any of it got into her system.

I will talk to the MD later today and see if we can get help with nausea and vomitting. The last time we took doxycycline she had to use phenergan to keep it down. We may also use an NAET treatment to see if we can cut problems with mino if they persist.

Caitlin is concerned that she is losing too much weight - 12 lbs in 2 weeks. I felt alot of it in the beginning was fluid loss but she is still about 126 at 5'5" so we are ok for now. I will try to find some of the D free protein drinks and see if those will help.

I have tried to calm her about her symptoms and told her all of them have been experienced by others who have gone on to succeed. Encouraged her to try an extra 20mg Benicar when she is feeling partiucarly bad. She said she doesn't want to give up.

I have wondered if increase of sx could be herxing with Benicar? If they continue should we consider extra mino dosing?

We have not done well on anti-anxiety drugs in the past (atavan made her hallucinate) so we will talk to Dr. about that today as well.

Thanks so much for all of you who are giving your time and energy.

Mindy

Last edited on Tue Nov 13th, 2007 01:46 by Caitiegirl

____________________
Caitlin(18) lyme, seizures, myoclonus, dystonia, digestive, chronic headache, mental fog: 10/23/07 25D 36 1,25D 58, 1/12/09/5.7, 1/18/08 25D 9.9 Cut sun/D 9/26/07 Benicar 10/25/07, NoIRs 10/29/07

Caitiegirl
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Posted: Tue Nov 13th, 2007 01:49

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After talking to Dr this afternoon we feel more confident. I also started waking Caitie periodically and making her drink more water. This seem to help with some of the dizziness and fatigue. I should have realized earlier that she couldn't stay hydrated if she was only staying awake 4 hours.

Mindy

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Posted: Tue Nov 13th, 2007 02:10

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Thanks for letting us know you have spoken with Caitlin's doctor and will be taking measures to prevent dehydration.

Caitlin certainly could be experiencing immunopathology on Benicar alone. Starting minocycline may modulate and help establish a pattern to the symptoms. Suggest she begin mino at 25mg when she is feeling her best, perhaps after an anti-emetic. Use any palliative meds necessary to keep symptoms tolerable.

NAET has a dubious reputation and often promotes supplements which would be contraindicated.

She may be encouraged to read the new interviews in Marshall Protocol Success Stories

Let us know how it goes................

Caitiegirl
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Posted: Tue Nov 13th, 2007 17:43

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Just wated to clarify my NAET practitioner (an MD) has read the protocol and is on board with us. He has several other patients he may refer to an MP Dr. depending on how we do. He also doesn't do supplements or herbals. I think of the NAET as making sure your brain is not in the way of your healing- sort of like self-hypnosis. In any case we have had good results with no meds or supplements. I don't really want to start a discussion on it's flaws or virtues. Just wanted you to know we are being careful and sticking with the protocol.

Mindy

Caitiegirl
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Posted: Mon Nov 19th, 2007 17:55

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Posted by Caitlin's mother Mindy.

MP meds: 40 mg Benicar Q6H with additional 20mg prn 25mg Mino QOD

Non-MP meds: none, no supplements

Light: Caitlin has not been awake much during day. Had senior pictures done Fri. so had some light from flashes. Walked through a room yesterday which had blinds down but no plastic on windows. 15-20 sec filtered sunlight.

Symptoms: fatigue 7C, muscle pain 6C, stomach pain 6A, movements 2, headache 5C, diarrhea/constipation 6I all other sx are below 5. She also has amazing dark circles under her eyes which come and go.

Her extremeties are often cold to touch but the back of her neck feels hot and she feels like it is burning. It is obviously warmer than any other part of her body.

We have recognized a pattern since starting Mino. She takes it before bed and she feels very bad until about 6-8 hrs before next dose. Then she has periods of clarity and reduced symptoms. Have been waking her to make her eat and drink. Her aberrant movements also seem to be very light sensitive. When she had her pic made she started twitching and felt dizzy and exhausted. Used extra Beni which handled her sx. Since cutting D much of the movement disorder has resolved.

Note we finally have D levels. D,25 36 1,25D 58. So we know now that we really do have an elevated 1,25D. Feel like we are in the right place. All in all we are doing well. Caitlin's mood and determination are still good. Thanks

Mindy

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Posted: Wed Nov 21st, 2007 00:38

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Her 1,25-D is elevated at 58pg/ml and is 3.05 sigma high. Based on population studies, 99.89% of the population would be expected to have a lower number.

This 1,25-D is above the maximum of 45pg/ml listed in the Merck Manual of Diagnosis and Therapy (15 Oct 2006 online) . At levels above about 42 pg/ml, the 1,25-D (generated by the Th1 inflammation) begins to stimulate bone osteoclasts, causing bone to be resorbed (dissolved) back into the bloodstream. Not only does this lead to osteporosis, but also to calcium being deposited into soft tissue of the body, including the lungs, breasts, and the kidneys (where it forms kidney stones). Please see Osteoporosis, osteopenia and Th1 illness.

Yes, you are definitely on the right track! I'm sure you realize her 25-D is very high. See Stores of D gradually drop

Thanks for rating symptoms....I'm not familiar with the scale you are using. Keep up the good work.........

Caitiegirl
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Posted: Wed Nov 21st, 2007 06:50

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Sorry Meg,

I thought we were using the scale on the chart we downloaded from the website to rate our symptoms. Since she has so many symptoms we decided to rate from 1-10 and report anything over 5 unless it is new and particularly worrisome. C=Constant I=Intermittent A=AM only P=PM only

We saw one of our Drs. today. They were impressed with how much her movements and mood have improved.

Mindy

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Caitiegirl
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Posted: Thu Nov 29th, 2007 06:43

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Previous Post http://www.marshallprotocol.com/forum19/10577.html Posted by Mindy mother of Caitlin (17)

MP Meds: Benicar 40mg q6h, Mino 25mg EOD (11/11/07)

Non-MP Meds: None, no Supplements

Light: 30 min exposure on Thanksgiving Day. Wore coat, gloves, hat, NoIRs, ZnOx. Dr. appt. today. Out all 3.5 hrs with above dress.

Symptoms: fatigue 5C, muscle pain 5C, stomach pain 5A, movements 2, headache 5C, diarrhea/constipation 6I. She has had some rapid heart palpitations, and some trouble catching her breath which she rated a 6 but I think that is mostly because these symptoms are so frightening. Used extra Benicar. She has complained a lot about her neck burning and feeling hot. We have a little temperature indicator (which I know isn't very accurate) which you can put on the surface of the skin to estimate body temp. We tried this on her forehead and the temp was 98. But when we tried it on her neck the temp registered at 102. Thought that was interesting.

We have tried our best to avoid all D but on Thanksgiving Day she ate some potato salad w mayo and a deviled egg. Spent the next 20 hours asleep. I had to wake her to eat and drink. Then when she finally woke up she fainted at the kitchen table trying to eat. We skipped the mino that night. Our mino this week brought several hours of insomnia on the first day. The second day she was extremely tired and slept a lot. In general all her symptoms have improved noticably except for the fainting spell. She is having more and more time when she is awake, active, and engaged with the family. Monday she was literally bouncing around the kitchen teasing with her brothers. It's good to see her laugh. Thanks.

Mindy

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Posted: Thu Nov 29th, 2007 06:52

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Mindy,
Skin flushing is a very good indicator of the changes in perfusion that occur as the inflammatory cytokines wax and wane. With the bald patch on my head, I used to find its temperature was the best indicator when I needed another Benicar dose. Maybe the neck skin will be a good indicator too

Caitiegirl
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Posted: Thu Nov 29th, 2007 06:53

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Never thought of that. Thanks Dr. Marshall..

Mindy

Last edited on Thu Nov 29th, 2007 06:54 by Caitiegirl

Caitiegirl
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Posted: Sat Dec 1st, 2007 03:42

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Posted by Mindy mother of Caitlin (17)

MP Meds: Benicar 40mg q6h, Mino 25mg EOD (11/11/07)

Non-MP Meds: None, no Supplements

Light: Some filtered light for less than 1 minute. Has not been out since Tues.

Symptoms: fatigue 5C, muscle pain 5C, stomach pain 5A, movements 2, headache 5C, diarrhea/constipation 6I. Tires easily but is starting to do more. Did her laundry and some light house work and some work on the computer. She said she doesn't feel she could retain new, complex info but is enjoying being able to read and review things she's already learned.

Caitlin has felt much better the last 2 days. The mino does not seem to be affecting her much at all. She has a touch of insomnia but her other symptoms are holding steady or improving. Our plan is, if everything holds steady, to move up to 50mg on Sunday. Thought I would go ahead and post to give you time to respond if this is too early.

Mindy

Last edited on Sat Dec 1st, 2007 03:44 by Caitiegirl

Caitiegirl
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Posted: Sat Dec 8th, 2007 06:44

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Posted by Mindy mother of Caitlin (17)

MP Meds: Benicar 40mg q6h, Mino 50mg EOD (12/5/07)

Non-MP Meds: Ibuprofen 200-600mg, acetaminophen 1000mg prn for pain -no Supplements

Light: Had substantial light exposure Mon. while decorating for Christmas. Wore NoIRs and Zn Oxide but forgot hat. Was tired afterwards but not as bad as in the past.
Symptoms: Increased substantially after increase in mino dose. Fatigue 6C, muscle pain 8I, stomach pain 6I, movements 3, headache 7C, insomnia 7C, heart palpitations 8I, eye pain 6I, breathing 7C. Has had a couple of dystonic episodes. She has been taking an extra Beni for severe symptoms. Breathing problems are described as air hunger and pain when she breathes deeply. I have not noticed her winded or in obvious distress. I still feel her movements are related to light exposure. They seem to increase if she gets exposed to very much light.

Her mood is good. She was active and engaged with family and school life. Is back to doing some school work which is an obvious improvement. Still doesn't feel she can handle math or complex new material. Mino increase has definitely caused insomnia to be worse but this may be related to increase in pain. She finally agreed to use some Advil & Tylenol for pain. Still doesn't want to try anything for insomnia. I gave her the option to go back to lower dose of mino but she want to continue at 50. She says the symptoms are tolerable. A pediatrician at church saw her Sunday night and was amazed at the improvement. She is trying to get us some samples of Benicar. The last time she had seen her she had jerked and twitched constantly.

Thanks, Mindy

Last edited on Sat Dec 8th, 2007 06:49 by Caitiegirl

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Posted: Sat Dec 8th, 2007 07:27

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Caitlin, Once you have your feet on the ground in phase one, it's a good idea to experiment with minocycline and Benicar to see how they work for you. Extend the mino dosing schedule to every 72 hours to see if symptoms are dampened or if more immunopathology is provoked. And conversely, when symptoms peak (not necessarily intolerable), reduce or stop the mino dose to see if that dampens symptoms.

You could also try taking lower-dose minocycline every six or 12 hours to see if mino has an anti-flammatory effect for you. When a symptom approaches intolerable try an extra Benicar to see if that measure is effective to quell the symptom. The resulting information can be added to your personal tool kit and could come in handy in the future if symptoms become intolerable and you need to adjust MP meds to manage immunopathology.

Let us know how it goes...........

Caitiegirl
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Posted: Sat Dec 15th, 2007 04:46

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Posted by Mindy mother of Caitlin (17)

MP Meds: Benicar 40mg q6h, Mino 50mg Q3D
Non-MP Meds: Ibuprofen 200-600mg, acetaminophen 1000mg prn for pain -no Supplements

Light: Caitie had some significant light exposure on Saturday while shopping. She wore hat and NoIR's and Zn Oxide. Was out for about 3 hours. I'm having a hard time convincing her to wear the NoIRs inside the mall and Walmart. The fatigue was so bad afterwards that we went to every 3 days on the mino. I guess our protocol has run headlong into Christmas. Hopefully things will settle down after this week. She also cheated on her diet once this week by eating some fish. I don't think she will cheat again soon because it made her feel so bad for about 2 days. It seems to take us about 2 days after a major D exposure to get back to normal.

Symptoms: Fatigue 7C, muscle pain 8I, stomach pain 6I, movements 8I, headache 7C, insomnia 5C, heart palpitations 8I, eye pain 6I, breathing 7C (pain, air hunger). Saturday she had a major Dystonic episode about an hour after taking the 50mg of mino. The dystonia affected both arms, both legs, spine and neck. She also had some facial ticks. Her little finger stayed in an akward, unusual position for several hours after the episode. I worried that she had dislocated it but it eventually returned to relative normal. She still has some reduced feeling and tingling in the finger. We have had these severe episodes before, mostly in late winter and spring of last year when we were supplementing with D. Of all of her movements these scare me the most. I worry that she is going to twist and contract so strongly that she will break a bone, or worse yet her spine or neck. (I keep thinking this must be what it is like to see someone with tetanus) We took an extra Benicar and she did not have any more episodes this bad. But it made me nervous when time came for the next dose of Mino.

We are considering going back to 25mg until things settle down a little. I know it doesn't help that she has not done as well with light and diet. I feel we need to be dealing with one variable at a time as much as possible to really know what is causing the increase in symptoms so I think we will go back to 25mg EOD until after Christmas. Her mood is good although a little more irritability than usual. Thanks, Mindy

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Posted: Sat Dec 15th, 2007 10:01

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It must be so hard for Caitlin to want to live a normal teenage life and then be jolted back to the reality of her illness by exposure to natural light or vitamin D.

Reducing mino to 25mg until after the holidays is a good idea. She will have to decide for herself how much of life she is willing to give up in order to be able to progress and ramp up mino to facilitate the healing process. As her 25-D comes down she will be experiencing more immunopathology so it may be even more important in the future to avoid other symptoms.

The recommended first step when symptoms are intolerable is to take an extra 40mg Benicar immediately. Chewing the tablet and placing it under the tongue will promote faster absorptiona and quicker symptom relief. See How to make Benicar act faster

If intolerable symptom/s persist, increase Benicar to every fours hours around the clock and assess effect.

Then review all options in My immune response/symptoms are too strong. What should I do? Assess the options one at a time. Do not hesitate to use any of the adjustments suitable to you.

As always, if our information does not provide the answer for you (be sure to click on all the links), please ask before you take action.

Continue all supportive measures....light avoidance, rest, good nutrition, adequate hydration, palliative meds as needed. Hang in there.....

Caitiegirl
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Posted: Wed Dec 19th, 2007 05:22

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Posted by Mindy mother of Caitlin (17)

MP Meds: Benicar 40mg q6h, Mino 50mg EOD

Non-MP Meds: Ibuprofen 200-600mg, acetaminophen 1000mg prn for pain -no Supplements

Light: No appreciable exposure since last update.

Symptoms: With no appreciable D exposure, symptoms have improved and are tolerable. Fatigue 7C, muscle pain 6I, stomach pain 6I, movements 5I, headache 6C, insomnia 2C, heart palpitations 6I, eye pain 5I, breathing 6C (pain, air hunger).

By the time I had finished the last post, Caitlin had already taken her 50mg mino dose at 48hrs. She said she would like to continue at this dose if possible and promises to be more careful with diet and light. This has been a real learning experience for her. But at least we know there is a direct link between increased D and all her weird movement symptoms. We have no more family or church meals and since I will be the one cooking Christmas dinner I think she will do allright. The last mino made her symptoms increase but everything, including the movements and dystonia, have been tolerable. In general she is doing quite well. Her mind is clear and she looks so much healthier than she did a few weeks ago. She has also finally learned that benicar is her friend. She has become more adept at taking an extra at the first sign of an increase in symptoms. She really doesn't want to coast for several more days at the lower dose so unless you guys say no I will let her continue at the higher dose.(50mg). We will stay here until it doesn't affect her and experiment with high frequency mino dosing after Christmas. We will see the opthalmologist tommorrow. Thanks, Mindy

Last edited on Wed Dec 19th, 2007 05:23 by Caitiegirl

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Posted: Wed Dec 19th, 2007 14:37

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Thank you for the update for Caitlin, Mindy.

If Caitlin is tolerating the 50mg of Mino than ok to stay at that level. It is good she sees how Benicar can aid her when symptoms become intolerable.

Natural light exposure can really increase symptoms as she is discovering so lets hope she is willing to continue to correlate the cause and effect.

It is tough for adults to deal with all of this and for sure tough for a teen. Let her know she is doing a good job of it and to hang in there. Let her know we wish her the best of holidays.

Best Regards, VEZ

Caitiegirl
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Posted: Sun Dec 30th, 2007 04:13

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Posted by Mindy mother of Caitlin (17)

MP Meds: Benicar 40mg q6h, Mino 50mg EOD

Non-MP Meds: None this week.

Light: A few seconds exposure filtered light passing from one room to another daily. Maybe 45 sec. total.

Symptoms: Most symptoms have improved and are tolerable. She has had some GI herxing the last 48 hrs with abdominal cramps, nausea and vomitting. She has spent a lot of time sleeping. Fatigue 7C, muscle pain 8I, stomach pain 8I, movements 3I, headache 7C, insomnia 2C, heart palpitations 6I, eye pain 5I, breathing 7I. She has had fewer episodes with breathing problems but they are slightly more intense. She has had several episodes of her eyes blacking out. She always retains consciousness. This has been a recurring symptom for a couple of years. It would be nice if this is herxing and mino is going to get rid of it but we will just wait and see. Until this is gone she obviously can't drive so this is a big symptom for her.

When we first increased mino the symptoms on day 1 were more intense and she struggled with insomnia. Now the symptoms are worse on day 2 and she struggles with hypersomnia. We are trying mino 25mg Q6H for the next 24 hours while we are having some IP symptoms but they are not intolerable. I feel most of her symptoms now are IP because the movements, which always seem to increase when she is exposed to light, are fairly calm right now.

She has done well with diet and sun exposure. Hope everyone had a wonderful holiday. Caitlin did. I think maybe she is about the most incredible 17 year old I know.

Mindy

Noted

Caitiegirl
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Posted: Mon Dec 31st, 2007 22:11

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Posted by Mindy mother of Caitlin (17)

MP Meds: Benicar 40mg q6h, Mino 25mg Q6H
Non-MP Meds: None this week.

Light: She has been sleeping so much I think she hasn't really had any sun exposure. As far as I know she has been compliant with natural light also. No increase in movements which usually indicates light exposure.

Symptoms:
Fatigue 7C,
muscle pain 8I,
stomach pain 8I,
nausea 6C
vomitting 4I
movements 2I,
headache 7C,
insomnia 4C,
heart palpitations 6I,
eye pain 6I,
breathing 7I
black outs 6I

We have tried 6 doses of 25mg mino Q6H over the last day and a half. She is feeling much worse and would like to stop. We haven't seen any reduction of symptoms and most have increased slightly particuarly the blacking out. She has had a recent eye check up so this is not due to inflammation of the optic nerve. Her response actually looks a lot like it does when we increase mino. Should we continue trying the extra mino for another day or can we assume she is not going to be one of the lucky ones that get NSAID action from mino. She would really like to stop because of the nausea and black outs. Thanks. Mindy

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Posted: Mon Dec 31st, 2007 22:45

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It's fine to stop low dose, high frequency mino since it is not palliating her symptoms. This does not mean, that it won't work at a later date to diminish symptoms but it would not be the first option to try.

She can resume 50mg every other day or try 25mg mino or try no mino for awhile. Usually, an every other day dose modulates the immune system response so folks feel better on that but finding the right dose and schedule for her will require more trial and error.

It was a good idea to experiment and I hope symptoms lesson soon. She's a trooper..........

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