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cjnelson
Member
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Posted: Mon Aug 25th, 2008 05:54 |
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Hello All...I am new here. I have been dx with chronic Lyme. My oldest daughter has also with coinfection of bartonella or myco, they are calling it BLO so we dont know exactly. I suspect I am postive for it as well but testing was negative....my youngest recently had a postive lyme test as well. Needless to say not real good here on the home front!
I have been sick for 9 1/2 years now. I was dx in fall of 07 and have been in treatment since with little results but definitely improvement until I go off abx.
So a friend of mine researched this protocol and told me about it. I have heard of it but never researched it too deeply.
It makes a lot of scientific sense...quite frankly it seems to tie together alot of loose ends in the world of tbi's in my opinion. And I am open to learning more and seeing about giving this awhirl.
Of particular interest so far: more from my daughers side of things though by test results. She had a creactive protein test and it was in the HIGH range. She has weight issues, obesity, bipolar, tourettes, nasuea, vomiting spells, migraines, vision issues, insomnia and her vitamin d level was extremely LOW. It was run through labcorp and I dont think it was the 1,25 test but the 25 level test.
These 2 factors really caught my attention when researching this protocol as it rang very clear for me in the presentation and reading.
Myself, I have dealt with anorexia, muscle spasms, confusion, speech difficulties, recall difficulties, mood swings, facial/cranial issues, vision, heart palps, muscular pain, joint pain, etc......
Anyone who has been dx with Bb and or co's I would love to hear from you and your experiences so far.
I am very impressed with TG Marshall's history, research and that he is speaking at the 6th Annual Congress Autoimmune Conference especially after such a short period of time hence his research publication. It obviously presents with very high merits else he would not be going there! Nor would he be presenitng to the FDA.
I am very very hopeful! I want my life back and I want my children to know what life is really like! My oldest has no memory of such at all...as much as I want it for me, I want it for HER ten fold! I at least have memory of it....I want that back....
Thanks....
Cj
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Ill 7/99-DX 8/07 Lyme possible coinfections: Ph1 7/08; NOIRS; Daughter Lyme & myco: bipolar, ocd; Ph1 7/08, NOIRS
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cjnelson
Member
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Posted: Mon Aug 25th, 2008 06:07 |
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A few questions:
light avoidance:
is this only during treatment? does this change around after treatment or is this a forever thing? 
does it get that bad that you have to avoid and black out the sun in the house? I am in real estate and this scares me quite a bit. it is the only thing i have been able to do to make a decent lving and allow flexibility with my illness to stay afloat at all!
i have read that people have been on this one in particular for 4 years, i also read that typical treatment is 1-36 months? what is the average time frame or is there any way to know at this point?
Marshall stated that he is looking for cure for these diseases not just tolerable living that i have managed to get to and loose again, please tell me this is possible!
!this is a big step!
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Ill 7/99-DX 8/07 Lyme possible coinfections: Ph1 7/08; NOIRS; Daughter Lyme & myco: bipolar, ocd; Ph1 7/08, NOIRS
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Julia
Advocate (on leave)
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Posted: Mon Aug 25th, 2008 21:01 |
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Hi CJ,
I think some further reading will increase your hope of a return to normality:
"What is the Marshall Protocol?"
Simple Explanations
Post Treatment Lyme Disease Syndrome - Definition, symptoms, transmission, testing, treatment, MP Member experiences.
D-metabolites tests
Hypervitaminosis-D Symptoms
Success Stories
Bacteriality - a readable blog-style website by one of our members, with science-made-easy articles, an introductory 90-minute video, and interviews with recovering patients - an excellent introduction to the MP.
MP Memberships Temporarily Closed.
To answer your light question: How will I know when I've recovered? Can I go out in the sun again after remission?
does it get that bad that you have to avoid and black out the sun in the house?
For some, yes. For others, not quite that extreme. There's no way of knowing until you start! See Light Sensitivity-Basic Information.
Please ask any further questions here at your own personal thread.
Julia 
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ALWAYS CONSULT A PHYSICIAN
Essential Info; FAQ; Julia's story
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cjnelson
Member
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Posted: Wed Aug 27th, 2008 00:16 |
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Thanks Julia for your reply. I have researched and read the above thank you!
I went back and found my daughters vi D 25-hydroxy test results, my understanding is this is not the 1,25 but only the 25 level. Her level was a 17.7.
I do need to do more reading more for the comprehension factor on the D level indicators as it just isnt sinking in yet.....
From what I can comprehend is that her hydroxy 25 D is low and her Creactive is High which states high inflamation so her odds of the 1,25 D being high is going to be greatly increased.
Of other note is that she is not herxing like I have....hardly at all if any and hence seeing little improvement as well.
If nothing else, I am just "working this all out" in paper and making sure someone else is watching my train of thgouth to catch anything I may be speculating too far! Feel free!
Last edited on Wed Aug 27th, 2008 00:25 by cjnelson
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Ill 7/99-DX 8/07 Lyme possible coinfections: Ph1 7/08; NOIRS; Daughter Lyme & myco: bipolar, ocd; Ph1 7/08, NOIRS
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Julia
Advocate (on leave)
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Posted: Thu Aug 28th, 2008 20:15 |
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CJ,
A 25-D level of 17 may be considered low by 'normal' medical standards, but needs to be lower to let the immune system function properly. See The Importance of Reducing 25-D.
When you say your daughter hasn't been herxing as much as you, could you be more specific please? Herx is a term usually used for the temporary exacerbation of symptoms caused by bacterial die-off, as they release their toxins into the bloodstream. Most of us weren't doing much bacterial killing before we found the MP! One of the things that clearly shows that the MP is working is the experience of immunopathology/herx.
I've just spotted a question you asked and I missed, sorry:
i have read that people have been on this one in particular for 4 years, i also read that typical treatment is 1-36 months? what is the average time frame or is there any way to know at this point?
Please see How long does the MP take?
What degree of healing is possible using the Marshall Protocol?
Julia 
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ALWAYS CONSULT A PHYSICIAN
Essential Info; FAQ; Julia's story
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cjnelson
Member
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Posted: Tue Sep 23rd, 2008 21:29 |
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Ok....I started benicar last night. My question is on my daughter though.
She is being treated for bipolar. she was on lithium but pulled her off because we are going to start her as well. Her dr wants to put her on geodone instead while on this protocol.
Will that be ok on this????
I think we finally have a "team" willing to work with her. I will prod along on my own for now for I would rather spend the money more directly on her. I can follow and treat myself. I want her followed though....
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Ill 7/99-DX 8/07 Lyme possible coinfections: Ph1 7/08; NOIRS; Daughter Lyme & myco: bipolar, ocd; Ph1 7/08, NOIRS
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Julia
Advocate (on leave)
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Posted: Tue Sep 23rd, 2008 21:51 |
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CJ,
This is a question for your doctor; we are not medically qualified to answer it.
Please note that there are two groups of members on this site: those who are also members of the MP study (who post mainly on the main study site MarshallProtocol.com, including obligatory weekly progress reports, and receive MP advice and support from experienced nurse moderators), and those who are on the MP independently, through their doctors.
If you want to be placed on a waiting list for study membership (there is no guarantee that a place will ever become available) please see MP Memberships Temporarily Closed for instructions. We would dearly love to be able to help everyone, but we have a very small band of volunteer nurses, backed up by a very small band of volunteer advocates.
All doctors are welcome to join the private Professionals' Forum, where all the help and support they need is available, as well as access to the whole protocol from the start. Those who are on the MP independently must refer to their doctor for medical issues, and learn to search the MP 'library' on the study site to find information.
All the information you need is in the MP 'library' on the main site. Here on this site the advocates are happy to act as 'librarians' to help you find what you need to know to make your MP journey a success. Please use the search facilities first to see if your question has already been answered - see How to do a site search.
Non-members might also enjoy reading the members' informal discussion board MP-Lifestyles.org.
There is no medical support available for independents, but you're welcome to ask non-medical questions that can be answered by more experienced members. Any medical questions exclusive to your own case must be addressed to your doctor. There is no need for independents to post progress reports, though you're welcome to drop in here occasionally and let us know how you're getting on.
We are very well aware that this situation is far from ideal for independents, but the only alternative we could see was to close the whole thing down to anyone who wasn't in the study.
Please make sure you know the following essential information thoroughly:
Phase1 guidelines - print one out for you and one for your doctor, and refer to it often.
FAQs Easy Finder & the ABC of MP - use with the search facilities to find information.
Essential Information About the MP - take this a little at a time!
Read, read, read... and let us know if you can't find what you need... 
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ALWAYS CONSULT A PHYSICIAN
Essential Info; FAQ; Julia's story
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Aussie Barb
Research Team
| Joined: | Sat Oct 13th, 2007 |
| Location: | Australia |
| Posts: | 134 |
| Status: |
Offline
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Posted: Tue Sep 23rd, 2008 23:02 |
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see also
Lithium Bipolar: personal experiences on the MP Lithium toxicity may occur when taking Benicar or verapamil (due to slow renal clearing) blood levels should be monitored very closely by your Dr.
Meds whose doses are determined by blood levels (thyroid supplementation, lithium, potassium, depakote) need more frequent serum measurements to monitor possible changing needs as inflammation resolves and biochemistry changes. suggest to discuss with your Dr.
MENTAL ILLNESS and Th1 inflammation
all best, Barb ...
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cjnelson
Member
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Posted: Wed Sep 24th, 2008 00:37 |
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| Thanks for the replies. I have sent our dr a request to join the moderation board and or contact Dr Marshall direct for guidance....I hope he will....
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Ill 7/99-DX 8/07 Lyme possible coinfections: Ph1 7/08; NOIRS; Daughter Lyme & myco: bipolar, ocd; Ph1 7/08, NOIRS
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cjnelson
Member
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Posted: Thu Sep 25th, 2008 20:33 |
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| Why is it necessary to take such high level of the benicar? Will a lower level not do?
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Ill 7/99-DX 8/07 Lyme possible coinfections: Ph1 7/08; NOIRS; Daughter Lyme & myco: bipolar, ocd; Ph1 7/08, NOIRS
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Sallie Q
Member
| Joined: | Sat Aug 9th, 2008 |
| Location: | Australia |
| Posts: | 56 |
| Status: |
Offline
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Posted: Thu Sep 25th, 2008 22:54 |
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Hello there,
While you are waiting for an answer to your question you may be interested in reading Christine's thread, there is some discussion of benicar in that .... Sallie (new starter)
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fatigue,Sjogrens 1,25D(??)Phase1:20Sep08 NoIRslowLuxEtc 25D13.2(Jly08)independent PCPProfessionalsForum NoAltMeds appendectomy~9yrs b.cancer1990 some calcification old scans.HotFlush20yrs D-dysregulated~60%signs
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Julia
Advocate (on leave)
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Posted: Thu Sep 25th, 2008 23:02 |
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How does Benicar act on the Vitamin D Receptor (VDR)?
Why shouldn’t we ramp up the dose of Benicar?
Benicar-Basic Information
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ALWAYS CONSULT A PHYSICIAN
Essential Info; FAQ; Julia's story
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cjnelson
Member
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Posted: Fri Sep 26th, 2008 00:57 |
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Ok. I have read these a few times now.
I started out on the Benicar 40mg 4xs a day. I am on day 3 now. Each day has gotten worse. I feel HORRIBLE!!!!!
I have also read that Benicar can have an IP effect alone. Obviously this is what is occuring but it is BAD!!!!! And my thinking is to decrease..but what I read is to increase!?
I am fevering, flushing, extreme fatigue, headache (typical herx as in past from abx) but my biggest cincern is chest pain. Everything I read says that this wont cause heart attack but that is what it feels like!
Now I will add that I have had inflammation in heart...palps and chest pain has been a symptom for several years now. But I thought, in my reading and comprehension, that the Benicar should HELP but it is not....
I cannot imagine adding a abx - no way! Not at this point at least.
HORRIBLE!!!! I FEEL HORRIBLE!!!
Last edited on Fri Sep 26th, 2008 00:59 by cjnelson
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Ill 7/99-DX 8/07 Lyme possible coinfections: Ph1 7/08; NOIRS; Daughter Lyme & myco: bipolar, ocd; Ph1 7/08, NOIRS
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Julia
Advocate (on leave)
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Posted: Fri Sep 26th, 2008 09:34 |
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When should I be concerned about cardiac symptoms?
I just started Benicar. Why do I feel worse? What should I do? says in part,
Avoid lights during this hormonal adjustment period
You'll want to be extra careful to avoid sunlight/ bright lights during this time as it will increase the level of 1,25-D at a time when your body is trying hard to readjust to a more normal level. This would make you feel even worse. If you work you may need to take a couple of weeks off work until your symptoms stabilize. See Why does exposure to natural light increase symptoms?
Sunglasses
Do not start taking Benicar until you have your NoIR sunglasses. If you have started Benicar without adequate eye protection, you will need to stay indoors during daylight hours in a low lux environment. Regular sunglasses may provide some relief indoors if you eyes are symptomatic.
My immune system seems to be responding to Benicar alone. Why? - explains why this is a good sign.
____________________
ALWAYS CONSULT A PHYSICIAN
Essential Info; FAQ; Julia's story
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cjnelson
Member
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Posted: Fri Sep 26th, 2008 18:12 |
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Thanks Julia....
I have read all these already...just really surprised at the level of reaction already with only the benicar. Quite amazing to say the least!!!
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Ill 7/99-DX 8/07 Lyme possible coinfections: Ph1 7/08; NOIRS; Daughter Lyme & myco: bipolar, ocd; Ph1 7/08, NOIRS
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cjnelson
Member
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Posted: Fri Oct 3rd, 2008 13:19 |
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We added mino. I added Tuesday and it was a bit rough at first but felt so much better next am. Added it for both of us yesterday as we were both feeling just horrible and so much better for both of us today...so far...
We got our NOIR's in and that has helped tremendously!!!
My daughter was doing terrible on just benicar. She was even fevering the past 3 days...so far today she is not.
We finally found a dr to help as well!
So very excited about this. We go on the 20th and will have our D levels drawn on Wednesday so hope to have results before we go.
If there is anything we are missing, please let us know!!
started benicar 11 days ago; added mino for both yesterday, on day 10 - pulsing 25mg every 48 hrs.
My palps are doing better but still experiencing chest pain and now even lymph node pain in left arm and neck. This really hurts!!!!!!
Sending the reading posts is helpful to keep us on track! Thanks for support - plan to keep an update on here for tracking purposes either way though.
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Ill 7/99-DX 8/07 Lyme possible coinfections: Ph1 7/08; NOIRS; Daughter Lyme & myco: bipolar, ocd; Ph1 7/08, NOIRS
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Julia
Advocate (on leave)
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Posted: Sat Oct 4th, 2008 10:30 |
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| Keep up the good work!
____________________
ALWAYS CONSULT A PHYSICIAN
Essential Info; FAQ; Julia's story
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cjnelson
Member
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Posted: Wed Oct 15th, 2008 13:43 |
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going into 4th week.
we are both still at benicar every 6 hrs and 25mg mino every 48 hrs.
noticed my heart palps and chest pain increase when i miss a benicar - especially the one at 2 am! also had my first menstrual cycle this week while on protocol and noted very increased palps on first 36 hours. still there but are decreases a bit.
not having consistent days yet so sticking at current levels.
have noticed a real increase in an old symptom, one of the originals. i had an mri years ago - looking for ms as they thought that was what i had - and it showed inflammation of the medulla - well that inflamation is back with a vengence. worse than i remember it but it probably is about the same just havent had at this level in a long long time. i feel it all on left side and it goes from back of head to front of face, jaw area, facial area, down neck, into shoulder, arm and chest wall.
lymph nodes on the left side are inflammed as well and they hurt! in my jaw, back of neck and head, left underarm.
my daughter feels like her psych symptoms are increasing. she noted that she is hearing voices and auditory sounds again. these have come and gone for years but seem to be increasing.
we go to our first dr appt next monday. we had our d levels drawn and hope to have them back by dr appt.
i am going on a conference leaving out today and will be flying. i have been very scared of flying - afraid the pressurizing of cabin will trigger something cardiac - sure its just FEAR but cant seem to shake the fear either.....
i am scared to death that taking these meds and the change up in my cardiac symptoms will create a necessity for me to take them the rest of my life. because when i miss one my symptoms go off the charts again. does this mean i will have to rely on this med for the rest of my life or will this evenutally correct?
i do and have always believed that the infection has really settled in this area on my left side. my overt symptoms have always been dominant left. either way i can say that i hate it and i am so over it. 9 years is a long time to endure this. i lost my 30's and now going into my 40's all i want is to have some normalcy back......
i get down going through treatment after treatment after treatment......and still feeling like crap and feeling often worse......
Last edited on Wed Oct 15th, 2008 13:44 by cjnelson
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Ill 7/99-DX 8/07 Lyme possible coinfections: Ph1 7/08; NOIRS; Daughter Lyme & myco: bipolar, ocd; Ph1 7/08, NOIRS
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natalie17
Advocate
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Posted: Thu Oct 16th, 2008 02:40 |
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Hi Cjn & daughter,
Sometimes symptoms do increase when an increase in antibiotics is needed.
See - cjnelson said;
i am scared to death that taking these meds and the change up in my cardiac symptoms will create a necessity for me to take them the rest of my life. because when i miss one my symptoms go off the charts again. does this mean i will have to rely on this med for the rest of my life or will this evenutally correct?
You will not have to rely on any of the MP medications for the rest of your life - remember they are curing you and the fact that you notice symptoms increasing/immunpathology is proof of this.
All symptoms will resolve with time
See/review -
When should I be concerned about cardiac symptoms?
What precautions do I need to take when I am going out or when travelling away?
For your daughter -
What is neurological immunopathology?
Recognizing neuro-psychiatric symptoms
This is your best chance of having a normal life back.
The MP is not like other treatments - although you do have to feel worse (remember feeling worse/immunopathology is not getting worse), it is curative.
You may find it helpful reading the Members' Success Stories.
Take good care,
Natalie
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I can help you understand the recovery process, but only your physician is licensed to give you medical care.| ABCofMP|My Story
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cjnelson
Member
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Posted: Wed Nov 5th, 2008 17:56 |
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Got our Vit D levels in FINALLY! Took FOREVER!!
My levels:
25 - 42
1,25 - 72
Daughters
25- 28
1,25 - 40 (i think he said 40 but it might have been 140????? he said she is "worse" than I am)
We are up to 75mg of mino every other day with benicar every 6 hrs but sometimes adding an extra or a half extra depending on IP. It has NOT been easy at all.
I am having some real issues with changes of menstrual. I started a week early last month and now started again today and its only been 2 weeks. So my cycle is messed up.
Pain levels have been bad and fatigue levels off charts for myself. Daughter is just starting to complain of pain levels once we hit the 75 mg of mino. Otherwise she has dealt with more fatigue. her stomach issues seem to have disapaited quite a bit.
This may be a long road!
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Ill 7/99-DX 8/07 Lyme possible coinfections: Ph1 7/08; NOIRS; Daughter Lyme & myco: bipolar, ocd; Ph1 7/08, NOIRS
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