 |
| Author | Post |
|---|
Caitiegirl
Member in Phase 2
|
Posted: Sun Jan 6th, 2008 16:56 |
|
Posted by Mindy mother of Caitlin (17)
MP Meds: Benicar 40mg q6h, Mino 75mg QOD
Non-MP Meds: None this week.
Light: She tried to go out one day for a walk with Zn & keto creams, hat, gloves, & long sleeves. Only stayed out 10 min or so because of extreme cold here. She is complaining about not being able to see inside with 10% NoIRs on. We will go ahead & get 40% ordered this week. I told her she could wear regular sunglasses inside as long as there was no natural light.
Symptoms:
Fatigue 7C,
muscle pain 6I,
stomach pain 6I,
nausea 3C
vomitting 0
movements 2I,
headache 7C,
insomnia 4C,
heart palpitations 6I,
eye pain 5I,
breathing 5I
black outs 2I
Caitie stabilized again at 50mg after our experiment with high freq. dosing. She is feeling worse on day 2 of her cycle. She is still very tired but I think this is something we would be battling without the MP. We are moving up to 75mg as of yesterday. (Sorry for some reason we couldn't get online yesterday.) All symptoms are tolerable for now. Thanks everyone & Happy New Year!
Mindy
____________________
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
|
Foundation Staff
.
| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17283 |
| Status: |
Offline
|
|
Posted: Sun Jan 6th, 2008 19:33 |
|
Thanks for letting us know Caitlin is doing okay on 50mg mino every other day. You are right that fatigue will take awhile to resolve and that regular sunglasses (she might find them more attractive) are fine to use indoors under artificial light. If artificial lighting is 30 Lux, she may not need sunglasses indoors.
Based on your report, you could increase mino to 75mg. See How To Identify Immunopathology (Herx) and How to assess symptoms. Finding the low enough/high enough dose level of minocycline that works is part of the experience gained throughout the MP journey. Caitlin will gain confidence in her knowledge of the actions of her immune response and when to increase as she gets more experience in independently adjusting the MP meds.
Stay at each subsequent dose level for a minimun of 3-4 doses with tolerable symptoms at all times before increasing unless experience tells you that an increase would dampen intolerable symptoms.
In a 'crisis' situation, in addition to increasing oral Benicar to every three or fours hours around the clock, an extra 20mg of Benicar may be taken sublingually with each every three or four hour oral Benicar dose.
Let us know how it goes........
|
Caitiegirl
Member in Phase 2
|
Posted: Wed Jan 9th, 2008 00:44 |
|
Posted by Mindy mother of Caitlin (17)
MP Meds: Benicar 40mg q6h, Mino 75mg Q3D
Non-MP Meds: None this week.
Light: None since last post (She has hardly been awake)
Symptoms:
Fatigue 8C,
muscle pain 8I,
stomach pain 7I,
nausea 6C
vomitting 0
movements 2I,
headache 7C,
insomnia 4C,
heart palpitations 7I,
eye pain 5I,
breathing 6I
black outs 3I
Because of the severity of the IP at this point, (having just increased to 75mg) we are going to every 3 days on the mino. She is doing fairly well just not awake very much. She did seem to be able to stay awake more today (day 3) than on 1 or 2. We will stay here until symptoms stabilize. Thanks, Mindy
____________________
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
|
Foundation Staff
.
| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17283 |
| Status: |
Offline
|
|
Posted: Wed Jan 9th, 2008 00:54 |
|
| Keep in mind that some folks have more immunopathology when they extend the dosing schedule to every 3 days. Have you increased Benicar to every four hours? That is the first step to take.
|
Caitiegirl
Member in Phase 2
|
Posted: Wed Jan 9th, 2008 01:21 |
|
We are on the look out for increase IP on the third day. It seems at the end of our cycle symptoms increase on day 3 but when we first increase to the higher dose of mino it seems to take a little over 48 hours to get the symptoms to calm back down. Sorry, I should have noted in my post that we did increase Benicar to every 4 hours but then I let her sleep about 7 hours straight last night. I will make sure she takes Beni every 4 hrs. even at night until symptoms stabilize.
Mindy
Noted
____________________
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
Member in Phase 2
|
Posted: Wed Jan 9th, 2008 20:41 |
|
Just a note. Caitie is much better. She has been awake since going Q4H on Benicar. I am going to go sit in the corner with my dunce cap on and write "Benicar is my friend" 1000 times so I won't forget this lesson. Thanks Meg.
Noted
____________________
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
Member in Phase 2
|
Posted: Mon Jan 14th, 2008 05:45 |
|
Posted by Mindy mother of Caitlin (17)
MP Meds: Benicar 40mg q4h, Mino 75mg Q3D
Non-MP Meds: 300 mg ibuprophen today (one dose)
Light: 30 min outside Fully covered w/ NoIRs hat Zn & Keto.
Symptoms:
Fatigue 7C,
muscle pain 5I,
stomach pain 5I,
nausea 0
vomitting 0
movements 3I,
headache 8C,
insomnia 0,
heart palpitations 7I,
eye pain 8I,
breathing 7I
black outs 5I
joint pain 6I
Caitlin is feeling much better after increasing the Benicar to Q4H. She started having some arthritic type joint pain in her hands yesterday. All symptoms are tolerable although the headache approached intolerable today. She has not really taken any pain meds and the ibuprophen today did help. She has been against taking anything for pain because of the stomach pain and nausea but I will talk this over with the dr. ASAP We will go ahead and get a Rx to keep on hand. Over all the last 2 days have been quite good. She has been more active and talkative. Eventhough we took the mino last night she spent most of today awake and active. We may well be stabilizing at the 75mg dose. We may let her go back to 5 or 6 hours between doses of Beni tonight to see if symptoms remain stable. I'm getting pretty tired on the 4 hr schedule. Thanks. Mindy
____________________
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
|
Foundation Staff
.
| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17283 |
| Status: |
Offline
|
|
Posted: Mon Jan 14th, 2008 15:19 |
|
You've done a wonderful job managing this episode of increased immunopathology.........and you thought your days of being up at night with a child were over. 
Increasing the interval between Benicar doses will let you know if the 'storm' is over.
Keep up the good work...............
|
Caitiegirl
Member in Phase 2
|
Posted: Tue Jan 22nd, 2008 21:36 |
|
Posted by Mindy mother of Caitlin (17)
MP Meds: Benicar 40mg q4-6h, Mino 75mg QOD
Non-MP Meds: None this week.
Light: It snowed here briefly on Sat. (a rare event in our part of the world) so Caitlin spent a little more time out than usual- maybe 2 hrs with full precautions. Symptoms:
Fatigue 8C,
muscle pain 7I,
stomach pain 6I,
nausea 3C
movements 3I,
headache 7C,
insomnia 2C,
heart palpitations 6I,
eye pain 5I,
breathing 5I
We are still at 75 and had expected to increase to 100mg Sat after a graduation meeting. The meeting was canceled so we are planning to wait until at least Thur. to move up so she can try to make the meeting. It is the only one until May. We are still having to add extra Benicar fairly frequently and are staying at 4 or 5 hours most days to keep IP managable. She is still having a good bit of IP on the day after mino dose but really isn't feeling well very often at all even on day 2. We stretched to day 3 yesterday but there was no difference.
Saw our family Dr Fri and explained to her the ins an outs of Phase 2 in case we need an emergency visit. (Our MP Dr. is 3 hrs away).
New Vitamin D 25 levels 9.9. She has done really well with her diet obviously. She said she just can't cheat- she gets too sick.
Biggest concern is that her immune system may be kicking in fairly strongly since D is low. Today & yesterday we had increased light sensitivity. She had to wear 2% inside. Thanks, Mindy
Noted
____________________
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
Member in Phase 2
|
Posted: Thu Jan 24th, 2008 20:43 |
|
Posted by Mindy mother of Caitlin (17)
MP Meds: Benicar 40mg q4-6h, Mino 75mg QOD
I am going to contact my MP doc today. Is there anything besides the antibiotics listed in Modified Phase 2 and Valium, we should ask for. With her IP fairly strong even on day 2 and 3 should we ask for a Dex script to keep on hand.
I am also wondering about oxygen. I know this might be expensive but I feel I might need to ask the questions and have the paper work ready in case we need it. Although my family MD knows about the protocol, I am afraid she might hospitalize or we will end up in ER in case of severe breathing isssues and that would be a major setback. Yesterday (day 2 after mino) she was complaining about having trouble breathing. It was after her bath so I wondered if maybe she got her bath too warm or the steam affected her, but to her, the symptoms seemed worse than before. She just seemed to have trouble drawing in air. This seems new. It's hard to tell, she has trouble verbalizing what's happening. She was not in any distress when I got there and her breathing seemed normal. We will watch this closely over the next couple of days and take precautions at bath time. She said showers make her feel much worse than a short bath. We have asthma inhalers and a nebulyzer lying around if we need them but from what she described this didn't sound like asthma and the episode was short lived.
Will go up to 100mg Mino on Friday if nothing happens.
Thanks, Mindy
____________________
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
|
Foundation Staff
.
| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17283 |
| Status: |
Offline
|
|
Posted: Thu Jan 24th, 2008 21:12 |
|
We no longer recommend the use of dexamethasone for intolerable immunopathology. Ask Doc for extra Benicar to use as directed.
It never hurts to have oxygen available but it may be difficult to obtain unless she presents with certain symptoms. See Supplemental oxygen
The inhaler and nebulizer may be enough. See Use of inhalers and nebulizers
|
Caitiegirl
Member in Phase 2
|
Posted: Sun Jan 27th, 2008 03:09 |
|
Posted by Mindy mother of Caitlin (17)
MP Meds: Benicar 40mg q4-6h, Mino 100mg QOD
Non-MP Meds: None this week.
Light: None .She has felt too bad to go out. Light sensitivity was greatly increased this week so she has worn NoIR 2% even in the dark.
Symptoms:
Fatigue 6C,
muscle pain 7I,
stomach pain 4I,
nausea 3C
movements 3I,
headache 7C,
insomnia 2C,
heart palpitations 5I,
eye pain 3I,
breathing 3I
This week has been another lesson in closely following the protocol. We had delayed going up to 100 mg so Caitlin could make her Senior meeting and be measured for her cap & gown. The meeting, scheduled for Saturday, was postponed until Thurs. because of weather. By Thurs. she was too sick to make the meeting. All of her symptoms had increased through the week. After starting 100 mg. all symptoms are much improved  We will move to Phase 2 as soon as she stabilizes at this dosage & all of her meds come in. Thanks, Mindy.
Noted
____________________
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
Member in Phase 2
|
Posted: Sat Feb 2nd, 2008 06:54 |
|
Posted by Mindy mother of Caitlin (17)
MP Meds: Benicar 40mg q4-6h, Mino 100mg QOD
Non-MP Meds: None this week.
Light: Appointment on Tues. so she had 4 hrs in car and well lit office took full MP precautions. Some natural light exposure for an hour today in full MP uniform.We took Beni Q2H for 4 or so doses after exposure. She tolerated the exposure much better than in the past.
Symptoms:
Fatigue 5C,
muscle pain 5I,
stomach pain 6I,
nausea 3C
movements 3I,
headache 7C,
heart palpitations 4I,
eye pain 4I,
breathing 3I
Caitlin has had a good week since going to 100mg. She has been much more active even after light exposure on Tues. We are reading up and gearing up for Phase 2. All symptoms are tolerable. We will wait until symptoms start getting worse on second day or until we have finished the second week at 100mg. Then we will move to next phase. Have a good weekend Mindy
____________________
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
|
Foundation Staff
.
| Joined: | Sat Jul 10th, 2004 |
| Location: | |
| Posts: | 17283 |
| Status: |
Offline
|
|
Posted: Sat Feb 2nd, 2008 18:27 |
|
Thanks for letting us know Caitie is doing well.......
Please post your next report in the phases 2 and 3 forum so we can discuss how start phase 2.
Keep up the good work...........
|
Caitiegirl
Member in Phase 2
|
Posted: Wed Nov 19th, 2008 00:23 |
|
We have just passed the one year mark on the MP and I wanted to take a few minutes to update anyone interested. I am quite aware that we had a unique presentation of mostly neurological symptoms and after having seen what the MP is capable of I find myself excited for my daughter's future.
In the winter of 2007 the vague, annoying, strange symptoms that had plagued my daughter (some since birth, some since a tick bite in 2001) took a frightening turn for the worse. I guess we will never know exactly what caused everything we have seen in the past 2 years but supplementing with vitamin D and fish oil was almost certainly what pushed her over the edge. She had been having something like an absence seizure, a myoclonic jerk, ticks, headaches, digestive issues, food sensitivities, and crushing fatigue for months. By January she was having something that looked like a full blown tonic clonic seizure, her arm that occasionally jerked was now bouncing rythmically all day long, and her arms and legs would suddenly contract and twist, often causing her to fall to the floor. I have seen one of her arms bounce and twitch for 3 straight days. We of course had her hospitalized but they did not find anything and diagnosed her as having a psychogenic seizure/movement disorder.
After her hospitalization her eyes lost their ability to track. They would turn up in some sort of weird seizure and one of them would turn around on its own. She also started to stutter and lost the ability to read. The neurologists sent us to psychiatrists, the psychiatrists told the neurologist to keep looking. By summer, my family doctor told me that because we had a family history of weird bizarre medical problems that maybe this was autoimmune. At the time Caitie was 17 which was too old for a pediatric rheumatologist and too young for an adult rheumatologist but as she grew closer to 18 she would try to get her in to see one. I must say I find myself amazed that this is how medicine works in our country. Somehow I expected some sort of ER or House response to our problems but instead we were shelved until a more convienent momemt.
Surprisingly during that summer Caitie seemed to improve slightly (we took her off all supplements and fish products because we were worried about mercury). Then she got a tick bite which made her sick. She was immediately put on Doxycycline but instead of getting better she became terribly ill. She threw up everything she ate and her temp went from 101 to 104. I had enough microbiology training to recognize this as a Herx Reaction. We had to go on Phenergan to keep the Doxy down. Amazingly, after a week of Doxy her neurological symptoms were greatly improved. She looked better than she had in almost a year. Her twitches, headache and weird eye movements were almost gone. This was the first time I considered that we might be dealing with an infection.
We made an appointment with a Lyme doctor and had her tested for Lyme. Like many, we tested negative on the ELISA but positive on the Western Blot. During my search for Lyme treatments we found the MP. I completely discounted it at first but revisited the website over and over until I became convinced that the MP was the safest treatment I could use for my daughter. I also became convinced it was our best chance for a cure. It was the only protocol which dealt with the issue which I felt we had been fighting since birth- impaired immune function.
We began the Marshall Protocol without ever trying any other therapies. That week of Doxycycline was the only antibiotics she has had for the prior 2 years.
After completing a year of the MP I can honestly say we find ourselves very grateful for having chosen this path. It has been a very difficult journey, but we have improved in almost every symptom. Our first Phase 2 antibiotic was quite difficult for her to tolerate and we had to switch off to an alternative after a few months but we are seeing her symptoms slowly resolve.
Seizures- We have had one seizure in the past 6 months. One of the antibiotics seems to hit the seizures pretty hard and as we return to it she may see more seizures as herxing. This is compared to 4-5 seizures an hour in Jan 2007.
Movements- Multifocal myoclonus, dystonia, nystagmus, eye tracking difficulties, grimacing, Bell's Palsy, tremors, twitches. Of all her symptoms these seem to be most related to Vitamin D and light exposure. All of these have greatly decreased. If she gets too much light they will come back but not nearly as strong as they were before. People who saw her 2 years ago are amazed at how calm she is now.
Digestive- We can tell the antibiotics are working on this area but it is a work in progress. We have had to give up all NSAIDs because of digestive problems and she still has a great deal of abdominal pain and other digestive symptoms. Her appetitie has also varied a lot. One antibiotic made her lose weight, another made her gain weight.
Weight-When she started Benicar, she dropped 25 lbs within a couple of weeks. It was almost like watching someone who had been on prednisone lose all the fluid retained while they were taking it. Then she began Phase 2 and she began to look anorexic because she lost so much weight so fast. Then she changed antibiotics and she gained a few pounds back. Right now she looks great and is at a perfect weight for her build and height.
Headache- It has been several months since she had a seizure headache, the worst kind of headache for her. She pretty much keeps a migraine all the time but we have seen the pain level and intensity decrease. We are seeing progress but it is slow.
Cardiac- This is the most worrisome of all the symptoms and the reason we are on the Modified Phase 2 Protocol. The palpitations, chest pain and the feeling that her heart is beating weak and slow has been with her since we started. This improved a lot with our last antibiotic but we have a ways to go.
Sleep- The first few weeks of Phase 1 all she did was sleep but on our current antibiotic insomnia is our most difficult symptom. Waiting for a miracle on this one.
Pain- The joint pain that has plagued her since middle school finally seems to be fading although it sometimes comes back strong as a herx. She also has a lot of muscle pain that comes and goes with our current antibiotic doses.
Fatigue- This is ever present. We have read enough of other people's stories to know that fatigue is often slow to resolve- which just stinks. Maybe it will go away when the insomnia does. Evenso, she is finding ways to stay active and productive. I am paying her to do the laundry for the whole family and she is trying to take a daily walk.
Anxiety, Depression, Obsessive Compulsive Disorder- I am lumping these all together because I see them as related. I can think of no one with more reason to be anxious and depressed than my daughter. But these symptoms are actually rare. She has been amazingly upbeat and happy. As long as she can get some sleep she doesn't seem to get too emotional or depressed. We haven't seen real OCD symptoms since our time on the Modified Phase 2 antibiotic. We realize now that this is being caused be an infection and if we see it again it will be as a herx.
Hope- I think that hope may be the greatest gift the MP has given us. We are no longer on that Diagnostic Merry-Go-Round which doesn't end. And we have hope, not only of being healthy, but of staying that way- of having a functional immune system that takes care of business so we never have this happen again.
As far as advice to those just starting or considering the MP- Listen to the Moderators and do what they tell you to. I have found that I didn't have a thought or idea that someone else had not tried before us. If they tell you to do something or not to do something there is a lot of experienced pain behind that advice. And READ! READ! READ! It is so much easier to handle a crisis if you have done your reading and understand what is happening and what your options are. At times it felt like all I could do was stay on the computer and read but now I am comfortable just checking for updates and new posts. It usually only takes a few minutes a day. We are finally starting to think and plan things that aren't directly related to our illness. What a Blessing.
We will try to update this more often now that we have this first one out of the way. Thanks Dr. Marshall and all of the moderators and other members who have helped us on our journey. Can't imagine where we would be if not here.
Mindy
____________________
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
|
Current time is 23:37 | Page:   1 2 |
|
|
|
|
