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Teri K.
Member in Phase 3
| Joined: | Tue Nov 1st, 2005 |
| Location: | Maine USA |
| Posts: | 124 |
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Posted: Sat Mar 24th, 2007 22:08 |
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25D 26 ng/ml, 1,25D 50 pg/ml. Benicar 40 mg Q8H started 3/3/07. Mino 25 mg QOD started 3/21/07. NOIRS, NO Vit D.
Hi All,
Cory started on 3/3/07 with lower doses of Benicar ramping up to 40 mg 3/day by 3/12/07. He adjusted well with only occasional dizziness. Blood pressure did not go down much. The diastolic was lowest at 56 but most of the time about 68.
We have already had a huge breakthrough (or coincidence). He had awaken on his own twice last night. May not seem like a big deal, but at almost 13 years old, it was a real problem.
He is starting to get pain in his left lower abdominal area. This started about a week ago after we started mino. It comes and goes. He still gets heart palpitations but this has been constant for about a year.
Cory has had ADD symptoms since he was a small child. He has trouble concentrating and is very forgetful. He has a hard time organizing his thoughts.
He has had a facial tic and a stuttering/breathing tic for many years also. He has had heart palpitations and chest pain for about 4 years on and off. We had him tested and nothing "abnormal" was found. He has had digestive problems, headaches and hormone imbalances (cortisol & other hormones). We were told that this was the cause of his fatigue and his inability to awaken at night even with the use of alarm clocks.
He is having a hard time adjusting to wearing glasses & hat every time we go out. He is very self-conscious. I am starting to dread the summer coming but will take it as it comes. We found a bottle of the Coppertone sunscreen with zinc oxide in it. We are also starting to look at the the long sleeved "wetsuit" type bathing suits for the days that we do have to go out.
We see the Dr. in two days and hope to increase Benicar to 4/day.
Thanks, Teri K.Last edited on Sat Mar 24th, 2007 22:15 by Teri K.
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Sarcoidosis/cardio Lyme endometriosis 125D59 25D26 Ph1Feb06 Toprol 12/28/05 NOIRs lite exp r/t work Ph2Jul06 25D13(Jun06) Ph3Feb07
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19385 |
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Posted: Sun Mar 25th, 2007 00:09 |
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Teri and Cory
Welcome to the MP and thank you for posting your details..
If your Dr agrees: to minimise symptoms - you can take extra half tablet (20mg) Benicar any time during cycle, or adjust dosage to 40mg Q4H. see also in BenicarQuiklink many Members report chewing or sublingual gives faster absorption/relief..
Being able to increase the Benicar to Q6H may help with the abdominal pain as well.. and in case it is necessary, you may wish to discuss some basic pain medication with Dr while you are there.
posting the FAQ for your reference: When should I be concerned about cardiac symptoms?
Cory may wish to make contact with Matt (14 yr) in phase 3 who has Rickettsia + Lyme symptoms..
Let us know if you have any questions. all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Teri K.
Member in Phase 3
| Joined: | Tue Nov 1st, 2005 |
| Location: | Maine USA |
| Posts: | 124 |
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Posted: Thu Mar 29th, 2007 11:07 |
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25D 26 ng/ml, 1,25D 50 pg/ml. Benicar 40 mg Q8H started 3/3/07. Mino 25 mg QOD started 3/21/07. NOIRS, NO Vit D.
Thanks Barb,
So far, so good! We were successful at achieving 4/day with Benicar. We will start that next week.
Right now, having a bigger problem with the Rx as far as pharmacy (because of insurance) than with the Dr. Have to wait to refill next week. I paid out of pocket for the last one so we should be ok from now on and we have notes for school. I have been sending him with sunscreen on his face (with some zinc oxide). I have to investigate the invisible zinc oxide to see if that is better to use.
He has been doing okay on the mino, herxing hasn't been as bad for the past few doses.
We have already been in touch with Matt & his mom. I know that they will be a good source of encouragement for him.
Will keep you posted!
Teri
Last edited on Thu Mar 29th, 2007 16:21 by Teri K.
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Sarcoidosis/cardio Lyme endometriosis 125D59 25D26 Ph1Feb06 Toprol 12/28/05 NOIRs lite exp r/t work Ph2Jul06 25D13(Jun06) Ph3Feb07
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Teri K.
Member in Phase 3
| Joined: | Tue Nov 1st, 2005 |
| Location: | Maine USA |
| Posts: | 124 |
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Posted: Fri May 18th, 2007 13:38 |
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Benicar 40 mg Q6hr, 3/21/07 25 mg qod, 4/9/07 50 mg qod, 4/18/07 75 mg qod, 5/12/07 100 mg qod
Hi All,
Sorry it's been so long since we've posted. These past few months have been a whirlwind. Cory is progressing very well on the mino. I sometimes hope that I'm not pushing him too quickly because it took me so much longer on the first phase.
Being his Vit D was high, I am concerned maybe we are moving too quickly and he isn't getting the full benefit from the mino if his level is still too high.
He just pushed up to 100 mg this week. I am hoping that our next appt (in the middle of June) we will be ready for (modified) Phase II.
He is still getting heart palps, but they don't seem to be as frequent. He doesn't panic so much when he does get them. He is not complaining of any other symptoms. Stomach pain and headaches don't seem to be an issue. He still has his speech and breathing tic. He gets dizzy at times and very fatigued. He can't walk for an extended time without having to sit down.
We were excited to hear that he may have his first job this year. His heart was set on working outside at a beach camp this summer and he was devestated when I squashed that on starting the MP. He was offered a councelor- in- training position inside helping out with woodshop, etc. He is very happy about that and so am I!!
Otherwise, he would have had to stay home all summer and everyone else in the family works. I was so relieved!
He is not as responsible as I would like him to be as far as compliance with the Vit D issues. I have tried to emphasize the importance of avoiding certain foods. He usually is pretty good, but sometimes can't contain himself. I caught him wolfing down a deviled egg at a party last week before I could get to him (one of his favorites!) He will sometimes eat sandwiches or hamburger (with the roll) at school but he is staying away from the obvious; fish, milk, etc.
He won't wear his glasses at school although he doesn't go outside. I have informed his teachers that he is not allowed outside for gym or any other purpose if he won't wear the glasses. He does wear a hat on the bus. There are only a few more weeks of school left so I'm hoping we can get better footing by September.
We have been using the new Coppertone sunscreen with zinc oxide in it. Is this as effective as the K-cream? I can't find any invisible zinc oxide in a higher concentration and I don't know if that is even safe for kids...... is there any new information on this? The last I had read was that it could be ordered on the internet but I still am unsure on it's safety. We have ordered long sleeved, wetsuit type shirts for the summer. He will only be outside getting to and from work so I hope covering up will be sufficient.
I am happy that I don't have any problems to report as of yet......will keep you posted. Thanks!
Teri K.
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Sarcoidosis/cardio Lyme endometriosis 125D59 25D26 Ph1Feb06 Toprol 12/28/05 NOIRs lite exp r/t work Ph2Jul06 25D13(Jun06) Ph3Feb07
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19385 |
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Posted: Fri May 18th, 2007 17:40 |
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Thank you Teri
The progress time looks fine.. and the symptoms are tolerable..
It is recommended that you retest your 25D 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?
The Importance of Reducing 25-D
see this FAQ Where can I find phase two and three? for information re sending an email for the Questionnaire to fill and return so that you have plenty of time to read and discuss the Information re Modified Phase two meds and doses with Staff in phase 2/3 forum before going to your Dr.
How to post for other people it will be helpful if we can have Cory's sig line / information available with his progress reports for the next phase. Thank you Teri..
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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jcwat101
Research Professional
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Posted: Sat May 19th, 2007 01:25 |
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Teri,
I think this answers your questions regarding the sunscreens. Most find something like the Coppertone as effective as K cream but some people may differ. Zinc oxide sunscreens have the added benefit of blocking 25D production and sunburn.
There are some links where you can order various types of sunscreens here and as much safety information as we have at this link:
Sunscreen Overview - ESSENTIAL INFORMATION ABOUT THE MP (Required Reading) - A
Joyce Waterhouse
Last edited on Sat May 19th, 2007 01:26 by jcwat101
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20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 1/05:22/6 9/05:1,25D=12 10/06:22/8, 4/07:25/<4 chewed Ben. 40mg q8h; Mod. P2: 2/23/05, P2: 4/06; P3: 1/1/07
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Teri K.
Member in Phase 3
| Joined: | Tue Nov 1st, 2005 |
| Location: | Maine USA |
| Posts: | 124 |
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Posted: Sat May 19th, 2007 09:03 |
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Thanks Barb,
I am glad we don't have to worry about the 1,25D test again. I was floored at the expense of that one! I will try to have the 25D done at his next appt.
Last night Cory had kind of an emotional meltdown. He is depressed although he doesn't know why. His self esteem is at an all-time low. I am wondering if this is a herx reaction although he has had bouts of this through his childhood. He is on his second dose of the 100 mg so it has me wondering.
Thank you Joyce for the sunscreen info. I will start researching this. The Coppertone "Spectra" only has a small percent of zinc oxide in it but it seems to work fine for me.
He may need something with a higher percentage of it.
I will start working on Cory's profile for starting Phase II.....I need to post for myself also. As you can tell, manuvering on the computer is not one of my stronger points!!
Procrastination is at it's worst for me right now!!!
....thanks, Teri
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Sarcoidosis/cardio Lyme endometriosis 125D59 25D26 Ph1Feb06 Toprol 12/28/05 NOIRs lite exp r/t work Ph2Jul06 25D13(Jun06) Ph3Feb07
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19385 |
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Posted: Sat May 19th, 2007 15:20 |
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Thank you Teri
When symptoms are high level/ intolerable - My immune response / symptoms are too strong. What should I do? .. Any time that your symptoms are going past tolerable: please check the precautions and the options one at a time to assess: do not hesitate to use any of the adjustments suitable to you. Tools to check: << if having any problems please check if you need to make adjustments in any area, and feel free to ask on the Board. thank you.
If taking the Benicar Q4H isnt minimising symptoms, the mino may need to be rocked back to 75mg? Quercetin: is helpful to some once established on MP.
Cory may be able to send for and reply some or most of the questionnaire himself..
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Tue Jun 5th, 2007 19:28 |
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Teri, Cory,
Thank you for filling your questionnaire. You are now able to read the Information in the Phase 2/3 forum.
We encourage you to begin a new progress report there in that forum to discuss the Staff recommendations re Modified Phase Two as most suitable to your individual situation, in preparation for discussing with your Dr so s/he can write the scripts. Thank you..
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Corey K.
Member in Phase 3
| Joined: | Mon Jun 4th, 2007 |
| Location: | Maine USA |
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Posted: Sun Jun 1st, 2008 07:46 |
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Hi All,
Corey has been continuing on the full dose of Phase 3 for about 3 months. He has been feeling well and his symptoms are getting fewer and farther between. He still has dizziness occasionally but he tends to push his limit on the outdoors. He covers up and wears his glasses and takes the benicar about every 4 hours when in the sun for a period of time.
I keep expecting his immune system to really kick in pretty soon. His vit D level is slowly falling so I watch him closely. My experience with that was similar to being hit by a truck so I'm sure he will let me know when it happens.
Otherwise all is well, and he is enjoying his new-found energy and health. I know we still have a ways to go, but he's come so far!! It's been 1 year and 2 months and I can't believe the improvements!! We are slowly plugging away, but keeping a watchful eye out for any "set back".
Thanks,
Teri K.
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13 yo/Lyme ADD palpitations 125D50 25D26 Ph1 Mar07 ModPh2Jun07 25D21(Aug07) Ph3Aug07,NoIRs lite exp r/t to school covered, top doses achieved 1/08
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