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P.Bear R.N.
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Posted: Thu Nov 9th, 2006 03:41 |
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| Mark, It might be helpful if you could give the exact levels of hemoglobin and hematocrit. Slightly low is no big deal. Also, when you are talking about arrythmias what type are they? What are the doctors and nurses calling them? Are they runs or just occasional funny beats? best, P.B.
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Aussie Barb
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Posted: Thu Nov 9th, 2006 03:58 |
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Mark
It is a good idea if you will post an index of the meds being taken or not taken as well as the symptoms so that the correlation can be seen now or in the future..
As per post in the urgents forum: should anxiety continue to be a problem - there are some options to consider.. the anxiety FAQ has some tips and information..
Another part is learning to understand what is happening in the immune response and how to adjust the medications..
Phase One is the training ground for getting the feel of the immune response /symptoms and gaining personal experience in managing all aspects of MP. Posting your experience and receiving guidance from Staff and others all help to gain experience and confidence. as does, reading others progress reports..
Let us know if you have any questions here in your own thread each time.
Thank, all best, Barb ....
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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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hellohope
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Posted: Fri Nov 10th, 2006 09:41 |
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| Hi All Just to update how things are going.Started benicar at Q6H yesterday and restarting mino at 25mg tomorrow to see how i go then if heart herx o.k. will go back up to 50mg after a couple of cycles.My chest xrays were clear no sarcs.My arrythmias have settled down had 3 today.Fatigue not too bad today probably because i havnt taken mino since last monday.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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Posted: Fri Nov 10th, 2006 14:47 |
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Hi Mark,
It's nice to know Hope is doing okay. We would love to hear from her directly. Folks who 'take ownership' of the process seem to do best. 
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hellohope
inactive member
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Posted: Sun Nov 12th, 2006 08:37 |
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| Hi Meg It would be nice for my wife to post and believe me she would love to.But with what very little energy she has ,she saves for our 6 year old son who has not had a well mum since he was born.If and when she one day feels better she will do more than just post she will be making sure every person who is suffering this hideous illness knows about the marshall protocol.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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Posted: Sun Nov 12th, 2006 15:37 |
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Will the anemia get worse and worse or does it stabalise in the low range.When do we need to be concerned and what happens if it goes critically low.Do we need to retest every couple of weeks.Should we take iron supps or not?
It's impossible to predict if the anemia will get worse. Please tell us the numbers of the Hgb and Hct.
Hbg and Hct do not change quickly. Your doctor will know when to retest.
Do not take iron supplements. Iron does not relieve this type of anemia.....it will only help the CWD bacteria grow.
What label did the doctors give the arrhythmia? You should be able to obtain your medical records so you will be better able to understand what your doctors have told you.
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hellohope
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Posted: Tue Nov 14th, 2006 08:48 |
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| Hi Meg The local doctor is doing a house visit tomorrow,to take blood and test haemoglobin,d levels to be tested.The heart arrythmias are P.V.C.s is it normal to get these at a rate of approx. 4 per hour all day even when my wife is taking benicar at 4omg every 6 hours.Also how much benicar is too much.Her other symptoms are not as bad like the fatigue ,muscle aches,lymph node pain .Thankyou Hellohopes hubbie.
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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
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Posted: Tue Nov 14th, 2006 18:33 |
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Mark
Meg has replied at your arrythmias post..
re Benicar: If your Dr agrees: to minimise symptoms -can take extra half tablet (20mg) Benicar any time during cycle, or adjust dosage to 40mg Q4H. see also BenicarQuiklink re Members report chewing or S/L gives faster absorption/relief..
re modulating symptoms:
My Herxheimer reaction is too strong. What should I do? ..
Any time that your symptoms are going past tolerable: 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 problems please check if you need to make adjustments in any area, and feel free to ask on the Board. thank you.
If you are concerned do not hesitate to contact your Dr.
Thanks, all best, Barb ....
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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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hellohope
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Posted: Tue Nov 14th, 2006 22:52 |
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| Thanks barb We had a rough night last night didnt get much sleep.She was talking about stopping the M.P. But i told her that if she did her illness will be with her for the rest of her life and the arrythmias probably as well.This is her only chance to recover from this awful nightmare.She is going to try benicar 20MG Q3H if that doesnt work then 20mg Q2H.She is a bit concerned about the benicar causing damage at such a high dose as some doctors have told her horror stories of kidney failure at very high dosages.If she want a med for anxiety which one is best that doesnt comprimise the M.P. Thankyou barb. 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
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Posted: Tue Nov 14th, 2006 23:02 |
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Thanks Mark
see this FAQ for details re Valium: you may wish to print for Dr: How can I control my anxiety and depression?
all best, Barb ...
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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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hrts4me
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Posted: Wed Nov 15th, 2006 02:33 |
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Hi Hellohope and wonderful caregiver, husband,
I am responding to your post in the Urgent Forum concerning Arrythmias.
You, Hellohope's husband said, "When there is heart involvement does it generally go on for a long time or does it depend on the individual."
and
"Thanks Meg I try to reassure her that these arrythmias are not going to harm her.I think that because she is so incapacitated at the moment that when she does get one it really unsettles her,she is preempting the next arrythmia."
and
"She was contemplating whether to carry on with the M.P.I told her it is the only chance we have for a full recovery."
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If you check my signature line you will see that I have Cardiac TH1 Disease, including Arteriosclerosis (Coronary Artery Blockages). I also have Conduction problems (short circuiting of electrical impulses)-- Arrythmia, as well as Tachycardia, Angina, Negative T-waves, and Shortened PR Interval Syndrome, inadequate blood supply to lower heart, thickened heart wall, and Shortness of Breath as part of the TH1 disease affecting my heart. I now take nitroglycerine sublingual tabs and a heart med called Verapamil, due to stopping MP treatment for a year and the cardiac infections worsening.
I know it is unsettling to feel some beats out of sync. Most often these aren't readibly noticable unless one is very well settled, quietly in bed or sitting inactive, without any distractions. (I am disabled and have been bedridden, stuck in a recliner, and homebound, so I understand how easy it is without outside distractions to hone in on symptoms). When one feels such they often become anxious, and wait in anticipation that it may become worse. Anxiety builds on itself.
My EKGS, echos, US, nuclear stress tests, and holter monitoring reveal all sorts of anomalies---but this is a symptom of the disease and its cardiac involvement. I have learned after repeated experiences that erratic beats they are just what they are---- and that the Benicar really works to protect the heart (and other organs) affected by disease. A good blockade lessens and may end them. The abx(es) on the MP will imo make for a healthy undiseased heart.
In your first question you asked if there is heart involvement does it generally go on a long time or depends on the individual. My answer which may sound rather harsh is this----don't treat it and it will get worse, and can be life threatening. I am not trying to scare you, but tell let you know that cardiac infections will not resolve on their own---I've tried As far as on the MP, I get relief from the Benicar blockade when it comes to cardiac sxes.
You stated your wife is contemplating discontinuing the MP. I would like, if you would, to tell hellohope, that the only way to make the heart well again is to treat it. Presently it seems she is experiencing a bit of arrthymia, probably due to some herxing, in the area. The good news is.....she is doing something about it so it WILL NOT PROGRESS---It can progress, and to stop treatment, would be a mistake. These infections do not clear by themselves, and other areas, as you see in my signature line will be added.
I have a great deal of Cardiac involvement. After getting to Ph II, I listened to a practitioner who took me off the MP, and after a year, the heart was in such poor shape I was visiting with paramedics way to often, taken by ambulance and hospitalized.
Now back on the protocol in Ph II again----I am so much better off, and the cardiac symptoms have become very minimal on the MP. (As a matter of fact almost as soon as I began the benicar, before reintroducing the abx.) Stopping the MP, imo, set my success back, but happily I am back on track. I never have to pop 3 sublingual nitroglycerine tabs due to excruciating angina, and then call the paramedics to transport to hospital to stabilize. On occasion now, back on the MP, I have benign arrthymias, tachycardia, and shortness of breath. Thanks to Benicar and ridding the heart of pathogens with abx dosing, I am expecting not to end up undergoing heart bypass for blockages and/or pacemaker.
Best,
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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Posted: Wed Nov 15th, 2006 02:33 |
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Anxiety can increase adrenaline which can increase heart rate and extra beats. Low dose Valium used only when needed is our recommendation.
Benicar protects the kidneys. If a doctor has a horror story about it, ask nicely to be directed to the scientific literature explaining it.....this is a trick question because there is none.
You were wise to convince Hope to stick with the MP. Heart inflammation will be easier to resolve now rather than later. We cannot predict how long she might have extra beats. I hope her doctor was able to reassure her she is not in any danger.
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P.Bear R.N.
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Posted: Wed Nov 15th, 2006 03:56 |
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| Mark, I just wanted to let you know that 4 PVC's an hour is nothing I would be concerned about. Having so very few is actually something to be very happy about. Many "normal" apparently healthy people have much more frequent PVC's than that. As long as she takes the MP slow and easy she is doing the best possible thing she can do for her heart. best, P.B.
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hellohope
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Posted: Wed Nov 15th, 2006 04:32 |
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Hello Meg,
Thank you for your reassurance. After taking my dose of 25mg on monday, six hours later, irregular beats came on hard and fast, I quickly crushed 20mg olmesartan and it was contained within half an hour, it stopped. This was really scary however and I am now scared to take my next dose. This is the second time this has happened, the first when I lost my eight hour block.
This is not hubby but hellohope, I will be getting a laptop in about four weeks, so I can post my own. Although feeling much better, and able to walk around the house a bit now. I know if I don't continue with the mp, I will return back to bed bound and I dont want to do this. My doctor thinks I should stop the programme.
Does this happen to other people? I never expected the herxheimer to do this.
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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P.Bear R.N.
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Posted: Wed Nov 15th, 2006 04:48 |
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| Hope, Glad to see you post. Although it is more expensive I would recommend you try to take the Benicar 40 mg every six hours so you don't risk loosing your blockade (with extra Benicar available for an in between 20 mg if needed). Heart herx has happened to others so you are not alone in this type of reaction. The more frequent dosing should be of help. best, P.B.
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hrts4me
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Posted: Wed Nov 15th, 2006 07:16 |
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Hope wrote, "After taking my dose of 25mg on monday, six hours later, irregular beats came on hard and fast, I quickly crushed 20mg olmesartan and it was contained within half an hour, it stopped. This was really scary however and I am now scared to take my next dose."
Hope irregular beats and a more rapid heart rate, can happen as a herxheimer reaction. It is quite normal, and many patients experience this.
The most important thing which you said was, "I quickly crushed 20mg olmesartan and it was contained within a half and hour, it stopped". You have just learned a very valuable lesson in PH 1---that Benicar helps the patient during herxing. You said you are scared to take your next dose---but you found yourself relieved after your Benicar.
Each time you have this experience and are reassured that it is not going to "hurt" you, and that the Benicar alleviates the symptoms, the less anxious I hope you will be.
Therefore you have found a very effective tool--in your Benicar--a good thing!
Hope wrote, "Does this happen to other people? I never expected the herxheimer to do this."
Many on the MP find this a common herxheimer symptom, Hope. My heart rate is elevated and I have arrythmia during herxing---I use it as a herx gauge of sorts.
I learned to change my mindset, and maybe this will help you out a bit too. When we are herxing---we are killing the bacteria that are making us ill---it is a good thing, leading us ever closer to wellness. If you record your heart rate on your progress report, you may even find that it is a good gauge for you, and will show you that healing herxheimer reactions are taking place after your abx.
Perhaps re-thinking what has become scary to you into the realization that the herxheimer reaction is evidence that the protocol is working will help you. Herxing is progress. Bacteria are dying! Benicar is your tool to make herxing effective and tolerable.
Keep up the good work!
Best wishes,
Hrts
BTW---It's good to hear you are up and walking around a bit---more evidence that Benicar can be your friend
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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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I love trees
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Posted: Wed Nov 15th, 2006 16:57 |
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Hope,
I don't have any advice to offer, and I'm new to the MP too, but I have a condition called Wolff-Parkinson-White syndrome. It's an electrical abnormality of the heart, so they say. I've had it for a very long time, and I didn't think it was related to my Th1 disease, but now I'm thinking it just may be, because I've been having more arrythmias during Herxing than I normally have. I don't think it's from anxiety either, I think it's just part of the herxing, for me at least, because I don't get anxious about my irregular hearbeats, I've had them too long. (At least 20 years and possibly since birth, I just can't remember. I thought it was normal until I went to the ER for a different reason and they found it on a heart monitor.)
Then I saw a cardiologist and found out that 20% of the population has WPW, (and only 20% of that 20% has any serious problem from it), and when you add that to all the people who have benign arrthmias for other reasons, they're very common. The doctor, (who's name was Dr. Wolfe, interestingly ), told me I didn't need to worry, unless my heart just kept beating at the fast rate for longer periods of time. He actually kind of joked about it, saying, "If your heart continues to beat really fast, and you pass out, then call me". It just showed me how common it was.
You get used to almost anything. I've sure found that to be true with all the chronic health problems I have. Sometimes now, when I have nothing better to do, and I'm having a series of arrythmias, I watch them to try and count the fast beats or time the pauses. (I've found that to be pretty impossible, by the way, but it can be entertaining.)
Carol
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Lyme/MS/Osteoporosis/IBS/WPW/Chronic hives - probios,mag.,silymarin. Oct06:125D=60,25D=26 /NoIRs /11-2-06 Benicar / avoiding light, D /using zinc oxide cream.
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hellohope
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Posted: Fri Nov 17th, 2006 09:42 |
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| Hi M.P.ers To all the Members that posted .Thankyou for all your support through this difficult time.I convinced my wife to take 25mg of mino this morning and to reassure her the benicar block will work fine.So she is taking 20mg of benicar every 2 hours to rebuild her confidence and she has not had any arrythmias yet.We will maintain the maximum block until she feels confident to go to 2omg every 3 hours.Her latest blood test has come back today.The haemoglobin has improved since the last test.It is now 113 g/l average range (115- 155 ) which has got the local doctor baffled.All other blood indicators look good. Kidney function and electrolytes are good.We should get the D metabolites back next week.My wife spoke to her ex specialist on the phone the other day and he does not support the full M.P. He thinks that the herx reaction does not exist and poeple just go along with each other.Hellohope told him straight,that it really does exist because before the M.P. she was taking 50mg of mino every day with no adverse effects.Now with the benicar block in place 25mg of mino brings on heart arrythmias.Also her other many symptoms are slowly improving.This protocol has really given us hope for a normal future. thankyou 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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Aussie Barb
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Posted: Fri Nov 17th, 2006 17:26 |
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Thank you Mark
good to see you are managing the meds. that is the key..
this FAQ What do my lab tests mean? may help the Dr to understand..
& HERXHEIMER REACTION /Immunopathological Response
all best, Barb ...
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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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hellohope
inactive member
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Posted: Sat Nov 18th, 2006 05:43 |
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Dosing now at 20mg benicar every two hours. Still getting a strong herx. Had nausea for four hours today, leg aches, felt quite ill. Took 25mg minocycline yesterday.
Should I stay on benicar, or change minocycline dose?
Many thanks,
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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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