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P.Bear R.N.
Research Team
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Posted: Sat Nov 18th, 2006 07:27 |
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| By all means stay on the Benicar. It is giving you a protective blockade, that you absolutely need. P.B.
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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Aunt Diana
Advocate
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Posted: Sat Nov 18th, 2006 10:39 |
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Just for my two cents worth. I have had cardiac arrythmias all my life, at times I took medication that would control it. When I came down with Lyme disease my heart problem changed and I had something called 2nd degree heartblock...or "winckebacke". My cardiologist told me the same thing...if I start to pass out that would be the time to do something about it.
My husband heard this and said....if that's a probable eventuality why don't they do something now, while you're healthy, rather than wait til you are passing out. My cardiologist agreed and I now have a pacemaker, very cutting edge, that just eliminates this problem entirely.
Good luck.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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jillian
Member in Phase 2
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Posted: Sat Nov 18th, 2006 15:32 |
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You said:
"My wife spoke to her ex specialist... He thinks that the herx reaction does not exist and poeple just go along with each other."
Made me think of a quote I saw today:
How much easier it is to be critical than to be correct.
~~Benjamin Disraeli
If the doc's sincere and willing to learn, consider getting him a copy of Dr. Marshall's presentation to the AAEM (American Academy of Environmental Medicine) when it's available on DVD, it's wonderful:
http://www.marshallprotocol.com/forum11/7628-1.html
If you haven't had a chance to watch it yourself, I'd encourage you to. Most of Dr. Marshall's presentations have been to other scientists and have been difficult for me to follow. This one is to MDs, so it's focus is slightly different, making it easier for me to understand.
In my very, very worst moments I wish docs could spend a week in my shoes, but I really and truly wouldn't wish this on anyone! The best 'revenge' is persisting on the MP and getting well!
Your fellow lemming  ,
Jillian
 Lemmings, aren't they cute?
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PrimryDX-PulmoSarc79,FMS,CFIDS,etc,disabled93. AvoidD/Noirs Aug02. Oct02: 1,25D=42 NTfrzen; Apr05:25D=10. P1 Oct05-Feb06; ModP2C Feb-Nov06; P2 Nov14-Dec06; ModP2BSS Jan-Mar07; ModP2CBSS Mar07-. Noirs & total light control in house.
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P.Bear R.N.
Research Team
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Posted: Sat Nov 18th, 2006 20:30 |
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Aunt Diana, Pacemakers are only useful for certain very specific conditions, and since you do not know what Hope's heart is doing; it is not helpful for you to talk about a pacemaker like it would help her. For the majority of people with arrhythmias, a pacemaker is contraindicated and would not help; and any surgical procedure has very real risks. I know you were only trying to help, but you don't understand the complexities of the situation. What works for one person may not work for another since there are many types of rhythm disturbances, many of which are not harmful and do not benefit from pacemakers.
best, P.B.
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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hellohope
inactive member
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Posted: Sun Nov 19th, 2006 02:30 |
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| Hi M.P.ers My wife has been getting a lot more nausea since increasing the dosage of benicar to 20mg every 2 hours.I read in the side effects of benicar website that nausea is listed. Has anybody else had nausea as a result of the M.P. It is lasting for several hours.Thanks Mark...
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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Aussie Barb
Research Team
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Posted: Sun Nov 19th, 2006 03:01 |
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Mark
Each time you post, please list your MP meds in an index format at the
beginning of your message. Listing the dose and schedules at the top of your post is helpful to Staff for replying and for other Members for reading and understanding .. thank you...
It is helpful for us to know the schedule you are using for the meds/mino and when the response occurs in relation to the timing of the dose.. ie how many hours after the dose etc..
The symptoms experienced are due to the Immunopathological Response.
The aim or the key is for you to achieve and maintain tolerable symptoms (physically, mentally, and emotionally) by adjustment of your meds dosing and schedule as suited individually to you within the guidelines.
as well as adjusting the Benicar for modulating symptoms, please see re adjustments to the mino and etc in this FAQ:
My immune response is too strong. What should I do? ..
Any time that your symptoms are going past tolerable: please check these 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 problems please check if you need to make adjustments in any area, and feel free to ask on the Board. thank you.
Phase One is the training ground for you to get the feel of your immunopathological response symptoms and to gain personal experience in managing all aspects of MP. ie eg including your meds and etc..
These Quick-Scan Tracking Charts may be helpful to you:
http://www.carouselcharts.com/JHR_tracking1.pdf
http://www.carouselcharts.com/JHR_tracking2.pdf
If you need further temporary relief of your symptoms after having adjusted your meds and as per the FAQ above, you may wish to contact your doctor or pharmacist for advice about palliative medications. Any medications that are not on the list of MEDICATIONS TO AVOID WHILE ON THE MARSHALL PROTOCOL are okay to take to relieve intolerable symptoms.
Thanks, all best, Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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hellohope
inactive member
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Posted: Mon Nov 20th, 2006 01:08 |
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Hi M.P.ers Taking benicar 40mg Q6H.Taking mino 25mg which my wife has not taken for 72 hours.Also she took 10mg of Endep (amitriptyline hydrochloride) on saturday night to help her sleep. She did not sleep at all last night and slept only a few hours the night before.She got up this morning complaining that her heart was getting a lot of arrythmias.I tried to calm her down and felt her pulse which seemed to me to be a bit rapid but regular.She insisted i take her to hospital and we proceeded to go to the car and she came over dizzy.So i called an ambulance they put her on a ECG which showed no heart irregularities.She is now back in hospital.Her doctor prescribed her some valium which i could not get her to take as she always reads the side effect sheet , which lists all these possible side effects,then she wont take them.I feel we are going to lose this only chance we have for her to get better, and it really saddens me.Idont really know what else i can do.Thanks Hellohopes husband Mark
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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P.Bear R.N.
Research Team
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Posted: Mon Nov 20th, 2006 05:23 |
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| Mark , I am so sorry Hope is having so much trouble with anxiety as an immunological/neurological response to killing her infection. Anxiety is not unusual as a response to the bug killing, but it will pass. Hope may need to take a sedative at times when she feels overwhelmed with anxiety and develops panic, and may need to try different sleep medications to help her. Some people do develop nausea as a symptom, but they need to keep taking fluids. She may feel safer in the hospital, but in reality she is much safer at home where she can avoid all the nasty bugs that breed in health care facilities. If she can not be reassured that what she is experiencing is within the normal range of what people experience on starting the MP, she might not be able to proceed at this time. If she understands that the anxiety feeds more anxiety and that her heart is OK at home she may be able to proceed with the help of some sedation and sleep medication. She needs to know that a little valium can make all the difference to many people. If she insists on going to the hospital again and again while refusing anti-anxiety medication, her doc might not be willing the continue the MP. I hope she can understand that the doctors are not putting her in the hospital at this point to treat her heart, but to help stop the panic that comes with her fear. In this country she might be given sedatives in the ER and when her ekg and labs were read she would generally be sent home. best, P.B. Last edited on Mon Nov 20th, 2006 05:24 by P.Bear R.N.
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hrts4me
Member in Phase 2/3
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Posted: Mon Nov 20th, 2006 06:10 |
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Mark,
Please tell Hope that nausea is often part of the DISEASE. I have had it the entire time I was ill. The Benicar (keeping up a GOOD blockade actually lessens it in me).
As far as the heart goes---I do have heart disease--my EKGS are bad, I have blockages in my coronary arteries, lack of blood supply in the lower portion of heart, and I can tell you, that if I do not treat these infections that I will probably die from Heart Disease(Heart Attack).
Hope doesn't seem to have this pathology if her EKG's are okay---and it would certainly be a mistake in my opinion, if she chose to discontinue treatment. She will end up further down the line with heart disease, as I have.
I too have arytthmias and tachycardia---but I ignore these. They occur frequently--- I have negative T waves, and a shortened PR interval, but I know they are a symptom of the disease.
If Hope has had a complete coronary work up, her EKGs are okay, and there aren't any blockages, and there is plenty of oxygen to the heart, etc., she is good to go....treating the symptoms she has of rapid heart beat, and such--- she will after proceeding through the protocol see a lessening of these.
It seems like a vicious cycle in that when these symptoms occur, it upsets her, makes her anxious, and leads to adrenaline production making the heart beat even faster. I think that's why her doc basically said---its and emergency when she passes out, because he doesn't expect this to happen.
I would hate to see her give up on the protocol and have her disease progress until she does wind up with heart disease, angina, and EKG's that aren't normal.
A small miniscule of patients have the side effects listed on handouts. Most do not. They are required to post the very rare effects. Valium has been used for so long, and is a safe medicine for so many, and may allow Hope to continue in the treatment and be less anxious. Each time she goes to the hospital, I imagine they are cutting off her Benicar---and she loses her blockade.
Benicar can help with her rapid beats, and the abx with time will kill the pathogens causing this. Valium will also keep her on an even keel....where perhaps she won't become so anxious about these, too.
It's not unusual at all for tachycardia to increase during herxing---but I can tell you---it does for me, and I just take it as a sign that I am targeting the bacteria...
I hope you can encourage her, and thank you for taking such good care of her. Sometimes the caregivers have quite a job, I know I thank God for mine.
As PBear said, if there is are no signs of coronary disease/instability, when she is assessed at the hospital, they are trying to treat the anxiety, not a life threatening heart condition. If she waits though....given a few years down the road, she may be developing and looking toward Coronary Heart Disease.
Best wishes,
hrts
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LYME COPD Arterioscl Seiz FM CFS Hypertens NASH HiChol/ 4.2cmKidneyMass&Stones HyperCaPhUria Angina Arryth SOB RadNeurop BiPolarI| 1/05 25D-14 1,25D-13 2/07 25-D14| Nitro Verapamil Hydrocodone Baclofen Dicyclomine promethazine clonazepam
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hellohope
inactive member
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Posted: Mon Nov 20th, 2006 10:27 |
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| Thankyou for your advice and kind messages , we get more genuine caring people on the web, than from our own family.My wife is still taking benicar Q6H , .She is not taking mino until she gets home.At the moment Hellohope is spending tonight in hospital,she is exhausted from the lack of sleep.She is going to take 2mg of valium tonight if she has trouble sleeping.She seems to be herxing too much on 25mg of mino ,even with taking benicar 20mg every 2 hours.Is there a possibility of taking mino at 12.5mg to lessen the herx.If not please advise.Also what is the best source of omega 3 when on the M.P. Thankyou Mark...
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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Aussie Barb
Research Team
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Posted: Mon Nov 20th, 2006 14:45 |
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Mark
Hrts and PB have given you good advice.
We do not recommend mino dosing less than 25mg.. see the FAQ for the details Why do you recommend that we NOT take tiny doses of minocycline? How does low dose minocycline work?
see also omega 3 link
Thanks, all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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Grace
Advocate
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Posted: Mon Nov 20th, 2006 22:21 |
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Mark and Hope.
I am on endep.Is Hope still on the endep?
Hang in there
Grace
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CFS, oct04 Ds=26/48, 4/07=7/24 MP PHI 2/05, PhII 6/05, PhIII 6/06, beni Q6H, Noirs rarely inside no nature light low watt, outside 40%10%, Hat, all covered, no gloves, paracetamol
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Vicki SA
Member in Phase 3
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Posted: Tue Nov 21st, 2006 03:37 |
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Mark,
Wishing you and Hope all the best! I hope things settle soon.
I'm sorry that you weren't able to attend the meeting with Trevor because of the crisis.
Keep posting your updates.
cheerio
Vicki
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ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 40mg, 2008 - cover with light r/t Work 3/7, NoIRs, hat, cover well, invis. zinc for outside, low lux home, Sept08 25D - 8
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hellohope
inactive member
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Posted: Tue Nov 21st, 2006 10:23 |
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| Hi all Hellohope is taking benicar Q6H .She has stopped mino at the moment.Taking 2mg of valium only when needed.Not taking any other meds.My wife is back home and resting.When she was in hospital she was exposed to some ultra violet lights.She wore her 2% noirs the whole time and applied nizerole cream to exposed areas.Would it be o.k. to begin mino again after the light exposure.Her blood pressure has been around 93/60 the last twelve weeks on the m.p.As soon as the general physician took her blood pressure in hospital it was 70/50 she asked the nurse to do it again and it was 72/50.When i got her home i tested her blood pressure with my automatic one and it read 92/60 strange! The general physician said rickettsia bacteria can not affect your heart.My wife told him he was wrong,he didnt like being told by a patient.He didnt have any other theory,its easy being a critic.I pray things get a little bit better from now on.Thankyou for all the suggestions and best wishes.Mark..
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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P.Bear R.N.
Research Team
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Posted: Tue Nov 21st, 2006 21:28 |
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Hope and Mark, It would be OK to rest for a few days before you take the 25mg of mino. This is no horse race so its alright to slow down once in a while and get some rest. It is not unusual for different blood pressure cuffs to read differently, and one size does not fit all. A regular cuff on a woman or adolescent with a small arm will always read low. A regular cuff on a person with a big arm will always read too high. Some providers just seem to forget to use the best size for the patient, but I am not saying that this is what happened(for sure). If a person is able to talk you know they are getting enough blood to their brain, and I would tend to think that the 70/50 was really just a bit higher in reality; but many people do just fine with a BP in 75-80 range. My blood pressure is already low. Can I take Benicar?
It is always a good idea to take enough salt and drink a lot of water during first months of the MP. Do I need to take extra salt if my BP is low? When you do finally take the 25mg of Mino, and if the herx gets too much, have you tried taking an extra 25mg of Mino every 12 to 24 hours to slow the herx down? Many people report that this helps, even if it seems counterintuitive. I know you have tried the extra Benicar. hang in there! P.B.
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hrts4me
Member in Phase 2/3
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Posted: Wed Nov 22nd, 2006 07:58 |
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hellohope wrote: .Her blood pressure has been around 93/60 the last twelve weeks on the m.p.As soon as the general physician took her blood pressure in hospital it was 70/50 she asked the nurse to do it again and it was 72/50.When i got her home i tested her blood pressure with my automatic one and it read 92/60 strange! Mark..
Mark it may be the difference in cuff sizes used as PBear responded, I get this often going from one doc to another, My cardio measures on both arms, and always uses the correct cuff on me, I trust his readings.
No matter though, because with these diseases it can be common for blood pressure and other involuntary functions, such as respiration, thermal regulation, swallowing and such to fluctuate in some, on a large scale.
Although predominantly hypertensive, I have times when my BP is much lower. Sometimes there are some pretty wild fluctuations. Hey, at times, I am normal  Not a cause for worry in me now, as it sums up the fact, nicely, that these are systemic diseases, in need of proper treatment. Which I feel I am doing. So yes, we watch symptoms, but one can get so fixed on them, and treating them, that they lose sight of the very thing that will eradicate symptoms. Soon they are treating the symptoms, and not the disease. I have made this mistake. Certainly there are meds that some patients must take, but I ended up forsaking the abx over them, and my disease got worse until I started treating again.
I can take BP at home in the standard method, as doc uses, or with a digital cuff. I find the digital cuff is more prone to variance and errors, with the model I sometimes use. You may want to take your home equipment to a physician's appointment, and ask the nurse to compare it to their readings on their equipment, and you may find the same.
You may find that postural changes greatly affect blood pressure, too. Some have OI (orthostatic intolerance) in which the body has a tough time adjusting BP from prone, sitting, to standing. Length of standing upright, too, may have a profound effect.
I always get tagged as red, immediate admit to ER, when the triage nurses have taken sitting BP and then standing, it elevates greatly, but many have drops. Vanderbilt University has some very interesting articles on OI and dysautonomia symptoms online--- Is is so commonly reported in CFS and FM. Many get abnormal results on Tilt table testing, which helps back up a disability claim.
Working with the varying tools and methods of dosing Benicar and Mino in Ph 1 that the staff are giving you, will allow Hope to make progress.
Best to you both,
hrts
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LYME COPD Arterioscl Seiz FM CFS Hypertens NASH HiChol/ 4.2cmKidneyMass&Stones HyperCaPhUria Angina Arryth SOB RadNeurop BiPolarI| 1/05 25D-14 1,25D-13 2/07 25-D14| Nitro Verapamil Hydrocodone Baclofen Dicyclomine promethazine clonazepam
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hellohope
inactive member
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Posted: Thu Nov 23rd, 2006 08:14 |
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Dosing at 6hours benicar stopped 25mg minocycline 7 days ago.
Doctor has been to see me and is very concerned about my low blood pressure. Was 62/50 on standing. Also my peripheral vision is being affected and he is worried I may have a stroke.
Wants me to discontinue immediately the benicar. He also said he will support me on this program anymore and I will have to find another doctor if I wish to continue. Has anyone ever had a stroke?
Also am I ok to stop the benicar straight away, just for a few days whilst we work out what we are going to do, and while we seek another physician.
I knew this wasn't going to easy, but this is really hard especially in australia.
Many thanks,
Hope
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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Aussie Barb
Research Team
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Posted: Thu Nov 23rd, 2006 08:26 |
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Hope
Until you have your/a Drs support you cannot continue the MP.
please read the FAQ Do I have to wean off Benicar? says in part: Benicar does not need to be weaned. Continue to diligently avoid sun/lights to avoid sun flares while your hormones may be readjusting to new levels while off Benicar.
The Benicar actually activates the immune system so that it can sense and attack the intra-phagocytic bacteria. Your immune system will often continue to do this in the absence of antibiotics, and even in the absence of Benicar. These are the symptoms you are experiencing. Do not hesitate to contact your Dr if you are concerned.
see details re Recognizing a stroke
How to take a break from the Marshall Protocol?
re BP: My blood pressure is already low. Can I take Benicar? Advice given by Dr. Blaney on the DVD. When low blood pressure and other debilitating symptoms occur, lay low, stay in bed, drink adequate fluids, eat salty foods and wait for the symptoms to wane.
Do rest and take care..
Let us know if you have any questions. all best, Barb ....Last edited on Thu Nov 23rd, 2006 23:23 by Aussie Barb
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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hellohope
inactive member
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Posted: Thu Nov 23rd, 2006 08:41 |
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Hello,
Thanks for the info. But you didn't answer the question if it's ever happened to anyone. Are you not allowed to answer?
Thanks,
Hope
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Rickettsia/CFS| Sept06 1,25D-45 25D-18 Nov06 25D 12ng/ml| Sept06 Avoid light/D NoIRs| Beni com Sept06| restart 16Jan07 Beni 20mg Q3H mino 25mg|mino 50mg 6/2/2007 75mg 23/4/07 Mod Phase 2 6May07 25D-8ng/ml
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Aussie Barb
Research Team
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Posted: Thu Nov 23rd, 2006 08:42 |
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| There have been no reports of stroke to us on this Board.. Thanks.. take care.. Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| MP Aug04| ABC of MP
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