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twyf
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Posted: Wed Sep 20th, 2006 23:45 |
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Father of 14 year old borrelia daughter.
Daughter first diagnosed in 2003, treated in 2004 with IV rocephin, followed by cholestryramine. Symptoms mainly neurological, with joint pain and headaches. Developed rash with rocephin, discontinuing use. Symptom resolution until June 2006 when exposed to numerous ticks in WV.
Current symptoms—altered voice, slurred speech, dyslexic letters and numbers, loss of ability to read or perform math, joint pain, headaches, severe ataxia (now confined to wheelchair), extreme photophobia, etc. Positive elisa test, negative western blots. Sensitive to all wheat (on strict wheat free diet) and mold.
Medications—10 days doxy in July 2006, 10 days azitromycin 500 mg ending 17 September. No symptom abatement at all. Steady decline since June. LP results pending.
Just discovered the MP, will pursue it with local physician. Spoke with LH1953 about the protocol and what to expect; prepared documentation to take to physician.
Questions. When is it safe to start her on the Benicor because of the Z pack? What would be her starting dose (weight 104 pounds)? Will have lab work to post when received, also waiting for csf test results.
Have already altered diet and have her in a very darkened room. Seems to be helping some already.
Intimately aware of herx reactions from last time, am thankful for anything that will even them out and also make antibiotics more effective so that iv therapy is not necessary.
Understand the importance of following the protocol exactly, not in any hurry.
Biggest concern now is not starting too soon.
Still trying to understand more completely how it all works, but starting to get a good base.
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strep 2002-3, lyme 2003-4, recurring symptoms 2006, anti-gliadin positive| 10/06 D avoid, dark room| 10/06 NoIR| 9/06 25D-24 1.25-42, Benicar 40mg Q6H Mino start 8/7/07| Ph2 Feb08|
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Aussie Barb
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Posted: Thu Sep 21st, 2006 05:21 |
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Twyf
Welcome to MP.com and thank you for posting.. Thank you to Lori LH1953 for assisting you..
As the parent of a 14 year old you may wish to look at the posts of Matt 14 now in Phase Two.. and also Information in Children on MP
and Post Treatment Lyme Disease Syndrome
Having taken Zithromax, we recommend at least 2 weeks wait after the last dose of Zithromax before beginning Benicar to avoid the risk of possible severe Herxheimer..
*Do you mind clarifying "Intimately aware of herx reactions from last time" perhaps you are referring to these previously mentioned antibiotics? thank you..
I am sure Lori has explained to you re being able to adjust MP meds to achieve tolerable herx.
Benicar dose: Dr Marshall recommends for you: Benicar dose 40mg q8h. and Mino as per Phase One as written.
Please check all precautions / instructions in the Phase One Guideline with your Dr. see NEW Addendum. 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..
1. When your Doctor orders Benicar, we recommend asking s/he to Rx Minocycline at the same time, to have in hand for use when required.
Checklist when Starting MP has the basic links..
Let us know if you have further questions. all best, Barb ...
When you can, please fill your signature line to help Staff and others reading < see this link for details to include Thank You ..
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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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Posted: Thu Sep 21st, 2006 05:27 |
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Hi Twyf,
Welcome to our study website. I can tell you've been reading the essential information about the Marshall Protocol. Your daughter sounds very ill with Th1 inflamamtion. Please say hi to her for us and tell her we will do all we can to help her get well.
It's important to get the D METABOLITES TESTS for a baseline.
The dose of Benicar to achieve an adequate inflammatory blockade is dependant on bacterial load, not body weight. With your daughter's history, symptoms and experience with the Herxheimer reaction she will need to take 40mg at least every eight hours.
The PHASE ONE GUIDELINE recommends waiting at least two weeks after discontinuing Zithromax before starting Benicar.
Let us know if you have any questions not answered in ESSENTIAL INFO ABOUT THE MP or Marshall Protocol FAQs. This thread will be your website spot to ask pre-MP questions. It is our pleasure to assist you in any way.
Best, Meg
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twyf
Member in Phase 3
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Posted: Thu Sep 21st, 2006 05:35 |
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Sorry for the confusion about the herx: it was referring to previous treatments in 2004. We are not sure if she's had any herx reactions at all to the doxy and the zithro. We are sure that she steadily declines daily. But we will be patient to start treatment until she clears the antiobiotics.
Tomorrow blood work will be drawn, will post the results when gotten.
Thanks,
Kevin
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strep 2002-3, lyme 2003-4, recurring symptoms 2006, anti-gliadin positive| 10/06 D avoid, dark room| 10/06 NoIR| 9/06 25D-24 1.25-42, Benicar 40mg Q6H Mino start 8/7/07| Ph2 Feb08|
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twyf
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Posted: Thu Sep 21st, 2006 05:56 |
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Yes, my daughter is extremely ill. Thanks for your concern.
I have decided one thing that is incredibly different about the MP and it's community--they want people to get completely well. A refreshing change from all the folks that we've seen recently....
Just read through most of Matt's story, will tell my daughter about it tomorrow.
Again, thanks for offering hope.
Kevin
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strep 2002-3, lyme 2003-4, recurring symptoms 2006, anti-gliadin positive| 10/06 D avoid, dark room| 10/06 NoIR| 9/06 25D-24 1.25-42, Benicar 40mg Q6H Mino start 8/7/07| Ph2 Feb08|
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robyno
Member in Phase 3
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Posted: Thu Sep 21st, 2006 08:08 |
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We are very glad that you have found the MP, Kevin - your daughter will get well again, just like Matt. You will be ticking off her symptoms sooner than you think.
Good luck, and let us know what we can do to help. Matt is an old hand at MP now and I am sure he would love to help your daughter all he can.
Regards, Robyn and Matt
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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twyf
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Posted: Fri Sep 22nd, 2006 03:00 |
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Any problems with 1mg melatonin? Tylenol or Motrin?
Thanks,
Kevin
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strep 2002-3, lyme 2003-4, recurring symptoms 2006, anti-gliadin positive| 10/06 D avoid, dark room| 10/06 NoIR| 9/06 25D-24 1.25-42, Benicar 40mg Q6H Mino start 8/7/07| Ph2 Feb08|
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Posted: Fri Sep 22nd, 2006 05:53 |
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Kevin,
Ibuprofen (Motrin) and acetaminophen (Tylenol) may be taken as directed by the doctor for intolerable pain. Some are using melatonin for intolerable insomnia but we recommend caution because its effect on the immune system is unknown. That means, if you really need it, use it. But if you are having trouble on the MP, look to the non-MP meds first for a possible explanation.
Best, Meg
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twyf
Member in Phase 3
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Posted: Sun Sep 24th, 2006 02:46 |
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Three days of light avoidance and D avoidance have had profound impacts on my daughter. She was able to carry on a two hour phone conversation with her friend and her friend understood her.  Normally I can't understand her on the phone, so this is a big breakthrough.
NoIR's have been ordered.
Matt's Mom, how has Matt's blood pressure been on the protocol? I'm sure that there will be lots of questions from a few doctors.
Also, yesterday she was able to write in her good writing, and most of her spelling was right!
She is very determined to get better and do whatever it takes, even if it means giving up ice cream.
Vit D tests on Monday.
Any ideas on why this disease progresses so fast in her? In the middle of June she appeared as normal as she did before she ever got sick, and had a healthy checkup. Had tick exposure in third week of June.
July first week, altered speech. Mid July, reflexes severely altered.
August, noticable balance issues. Mid August, loss of reading and math skills.
September, major balance issues. Mid September, wheelchair necessary.
19 medical appointments since July 6 including 2 ER and 2 hospitalizations.
We are ready for the MP if only to slow down the doctor appointments.
The light and D avoidance success shows me that there is real science to what this treatment plan offers.
Thanks again for the pm and phone calls.
Twyf
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strep 2002-3, lyme 2003-4, recurring symptoms 2006, anti-gliadin positive| 10/06 D avoid, dark room| 10/06 NoIR| 9/06 25D-24 1.25-42, Benicar 40mg Q6H Mino start 8/7/07| Ph2 Feb08|
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robyno
Member in Phase 3
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Posted: Sun Sep 24th, 2006 05:22 |
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Hi Kevin
Glad to see things are progressing already and you have barely started! You asked about Matt's blood pressure - his doctor checks if most visits and he has never been worried about it. I remember him saying that it was a little low at the start (I didn't write down the numbers so I can't tell you what they were) but not low enough to be of concern. Matt gets a little dizzy occasionally, especially when he takes his Benicar (20 mg) every 4 hr rather than every 6 hr on his worst herx days, but it hasn't been an issue.
Regards, Robyn
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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jrfoutin
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Posted: Sun Sep 24th, 2006 22:44 |
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Kevin,
Three days of light avoidance has a profound effect, just as light can have the profound opposite effect for those on the MP in a very short time. Be sure to read the full page for The effect of light on the brain (Amygdala), one of my favorite information pages. Here is a short quote:
The eyes have a complete, self-contained, renin-angiotensin system (RAS) in them. They are connected directly to the brain via the optic nerve. Any type of bright light (artificial or solar) falling on the eyes causes, via the RAS, the production of a small amount of systemic 1,25-D but it does not generate enough 1,25-D to cause system-wide biochemical problems.
The optic nerve directly connects each eye to the brain, possibly our most sensitive organ. Thus, light is transmitted to the brain via the eyes. Coursing through the amygdala are nerves connecting it to a number of important brain centers, including the neocortex and visual cortex. Many types of angiotensin receptors are known to be active in the brain. This can have the profound effect of stimulating portions of the brain to cause significant neurological symptoms.
You have seen a very dramatic difference in your daughter with light changes alone, and that can lead to wise decisions about environment conditions and protecting her eyes that you and she will make over the course of her recovery.
It may take a while to see longer-term changes from dietary D, which can be stored in the body for several months. Benicar will help drop the 1,25-D as well.
We are all so hopeful for your daughter to return to health. I'm so glad you are both here.--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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twyf
Member in Phase 3
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Posted: Mon Sep 25th, 2006 04:23 |
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No such a good day today, but there is always some form of humor. I just left her bedroom, and she said, "I love trip, it's my favorite of the peppers."
Maybe some of you lymies out there will get it, I'll leave the translation tomorrow.
Have a great night.
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strep 2002-3, lyme 2003-4, recurring symptoms 2006, anti-gliadin positive| 10/06 D avoid, dark room| 10/06 NoIR| 9/06 25D-24 1.25-42, Benicar 40mg Q6H Mino start 8/7/07| Ph2 Feb08|
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Dr Trevor Marshall
Research Team
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Posted: Mon Sep 25th, 2006 05:30 |
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Twyf,
Even though, at this point in time, it might seem very obvious to you that your daughter got very ill, very quickly, you will need to revisit that conclusion once she recovers (in a year or so).
In fact, the infection which made her succumb to the illness in June had almost certainly been present a very long time, it was just not making her symtomatically ill.
When she recovers, however, she will realize that things she thought were due to "growing pains" were actually due to "slowly growing sick," as they will disappear as she recovers full health.
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twyf
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Posted: Mon Sep 25th, 2006 22:39 |
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Got the blood drawn today.
Trip, my favorite peppers, translates, "Fall, my favorite season." She was also watching "Duke of the Bracelets," or "Lord of the Rings." Fun trying to communicate.
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strep 2002-3, lyme 2003-4, recurring symptoms 2006, anti-gliadin positive| 10/06 D avoid, dark room| 10/06 NoIR| 9/06 25D-24 1.25-42, Benicar 40mg Q6H Mino start 8/7/07| Ph2 Feb08|
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twyf
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Posted: Thu Oct 5th, 2006 16:02 |
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I go to the doctor to discuss the test results. Apparently they are all in the "normal" range.
My daughter has been having interesting symptoms since avoiding d and light.
First, she has been having fevers from 100 to 101 degrees. This is unusual because her normal temp is 97.4. Also, today, two classic bullseye rashes on her shoulders have appeared. They have been gradually getting bigger and redder. We have pictures to show to her doctor when I go tomorrow.
Can anyone explain why these rashes are showing up months after the tick exposure?
Thanks,
Kevin
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strep 2002-3, lyme 2003-4, recurring symptoms 2006, anti-gliadin positive| 10/06 D avoid, dark room| 10/06 NoIR| 9/06 25D-24 1.25-42, Benicar 40mg Q6H Mino start 8/7/07| Ph2 Feb08|
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Posted: Thu Oct 5th, 2006 19:06 |
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Lab ranges for Vitamin D are skewed by the presence of undiagnosed persons with Th1 inflammation. It is important to realize that what appears to be normal D-rest results may not be a healthy level. Post the actual numbers at Preliminary test results (for Comment) for an accurate interpretation of your daughter's results. Click here for What to include in your preliminary test results reports.
Rashes are not uncommon with Th1 inflammation. There are links to photos of cutaneous manifestations of CWD bacteria in this FAQ. I’ve developed a rash. What should I do?
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twyf
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Posted: Fri Oct 6th, 2006 22:23 |
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Today has been an interesting day. My daughter, who is nearly fifteen, had her very first period today. We had been concerned because it was so late as compared to the rest of the family. It looks like indeed a hormonal shift is occurring since the d and light avoidance has started. Imagine that!
Now we just have to find a doctor who will treat based on the serology of her d tests.
Four significant things since the d and light avoidance--real fevers, started cycle, appearance of bulls-eye rashes, clearer talking at times. It will be interesting to see all the improvements when she's finally on benicar.
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strep 2002-3, lyme 2003-4, recurring symptoms 2006, anti-gliadin positive| 10/06 D avoid, dark room| 10/06 NoIR| 9/06 25D-24 1.25-42, Benicar 40mg Q6H Mino start 8/7/07| Ph2 Feb08|
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Posted: Sat Oct 7th, 2006 04:06 |
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| It's interesting to see these preliminary positive changes. Please tell your daughter congratulations for us.
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Current time is 19:11 | |
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