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patrickburke
Advocate
| Joined: | Wed Oct 17th, 2007 |
| Location: | United Kingdom |
| Posts: | 24 |
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Posted: Sat Oct 18th, 2008 23:21 |
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Hi Deedee,
There is plenty of info at,
Breathing-Basic Information
I have had all the symptoms that you are currently experiencing and they are quite common.
Most IP symptoms for me lasted several months. I think that you are doing very well  .
For me personally any form of heat (IR) would increase my symptoms but everyone is different.
Pat.
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Sarcoidosis. MP since May '05. Now living a normal life with normal blood-work and imaging. And STILL improving! Pat's Story|
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Deedee
Member
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Posted: Sun Oct 19th, 2008 01:04 |
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Thank you. Your comment that you had the same symptoms and it is common is very reassuring. I have read that entire page you referenced and it did not discuss the characteristics of the productive cough.
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Sarcoidosis,lymphopathy. Diagnosed 7/26/08. 8/15/08 started MP; 11/7/08; 11/5/08 VitD24; Lipids: Chol350;LDL220;HDL>350;CRP>4
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patrickburke
Advocate
| Joined: | Wed Oct 17th, 2007 |
| Location: | United Kingdom |
| Posts: | 24 |
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Posted: Sun Oct 19th, 2008 02:35 |
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Deedee,
The productive cough is a good sign of IP. The dry hacking sarc cough is not, that is a failed response. Your body is doing its job properly now. Have you followed all the links on that page and then all the other links etc etc? It would take you quite a while.
What you have to remember now is that all the discomfort that you will experience whilst on the MP will be IP. When your body is repairing itself it will feel uncomfortable just like any other immune response eg a cold or a wound etc.
Adjusting your meds to make things tolerable is your goal now for a year or two. Your body was forcibly denied its immune response for many years which is how you got into this state. It will take a while for your body to catch up.
Take care,
Pat
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Sarcoidosis. MP since May '05. Now living a normal life with normal blood-work and imaging. And STILL improving! Pat's Story|
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Deedee
Member
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Posted: Thu Oct 23rd, 2008 03:13 |
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| Cough not as bad, fatigue not as bad. I am on time for Phase II in about a week if things continue to stabilize or improve. I had a pretty high Vitamin D (54) several months ago due to supplementation. I read that it can take 6 months for the Vitamin D to get below 25. Also read in one place that it should be less than 25 before going into phase II, and in another that it should be less than 12. Also read you should not stay in Phase I too long or it can support the bacterial growth. Question: Do I need to have the Vitamin D at 25 or less than 12 to start Phase II? I asked my doctor and he seemed as confused, as well.
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Sarcoidosis,lymphopathy. Diagnosed 7/26/08. 8/15/08 started MP; 11/7/08; 11/5/08 VitD24; Lipids: Chol350;LDL220;HDL>350;CRP>4
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JoshR
Advocate
| Joined: | Mon Aug 18th, 2008 |
| Location: | Sydney, Australia |
| Posts: | 215 |
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Posted: Thu Oct 23rd, 2008 09:59 |
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Hi Deedee,
The Phase 1 guidelines say this:
When the Benicar blockade and 100mg of Minocycline every other day no longer produce significant Immunopathology, the patient is ready to proceed to Phase Two.
There is no mention of a particular D level that is needed. In fact, it is recommended to proceed to Phase 2 as soon as it can be tolerated, to avoid re-colonisation of tissues by bacteria that are not vulnerable to Minocycline alone.
You should still keep trying to get your 25-D below 12 ng/ml.Last edited on Thu Oct 23rd, 2008 10:06 by JoshR
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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natalie17
Advocate
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Posted: Fri Oct 24th, 2008 02:00 |
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Deedee,
In addition to Josh's information, I'd suggest getting your 25D re-checked before starting phase 2.
Plenty of folk head into phase 2 with a 25D reading above 12ng/ml (when we're all aiming to get below that therapeutic level). What you need to be aware of is that when your 25D does eventually drop, you may experience and increase in symptoms as your immune system will no longer be suppressed. Nothing to be alarmed about - antibiotics can be decreased if it becomes intolerable, but something to be aware of.
You may also like to see see others 25-D Coming Down at Last ...
So, in my personal, non-medical opinion, having it checked again before heading into phase 2 will give you a better idea of how fast it's dropping and what you're dealing with. Also, it will allow you to see if it has or hasn't dropped at all - which would prompt a check of all food etc - and even light exposure.
Take 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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Deedee
Member
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Posted: Fri Oct 24th, 2008 02:07 |
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| Thanks to both of you. I am having it checked right before I go into Phase II. I have been very careful about food, so it will be interesting to see what the D level is now.
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Sarcoidosis,lymphopathy. Diagnosed 7/26/08. 8/15/08 started MP; 11/7/08; 11/5/08 VitD24; Lipids: Chol350;LDL220;HDL>350;CRP>4
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Deedee
Member
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Posted: Tue Oct 28th, 2008 01:58 |
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So weird---I got a letter from Quest Labs today saying my Vitamin D tests were wrong from 3 months ago and to go have it redrawn "for free." When I called apparently a number of the tests were recalled. So I will be getting a new test after almost 3 months on MP and sun restrictions.
If anyone has had a Quest Lab draw blood for Vitamin D lately, they may want to check it out. I don't know why it took them so long to figure out my tests were wrong and notify me.
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Sarcoidosis,lymphopathy. Diagnosed 7/26/08. 8/15/08 started MP; 11/7/08; 11/5/08 VitD24; Lipids: Chol350;LDL220;HDL>350;CRP>4
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Deedee
Member
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Posted: Wed Nov 5th, 2008 14:42 |
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OK--I feel really freaked out over my labs.
Triglycerides 376
Cholestrol 350
LDL 225
Vit D
24
I had worked hard with exercise and supplements for years to get all my lipids in normal range. In June they were all normal. I am afraid I will have a stroke while off of the supplements. Is there a point on MP and I can back on the niacin and red yeast and all, to get this back in line?
I am ready to go to phase II, but my Vit D is still 24. I am fearful of a crushing IP if I go on this and my D falls below 20. Should I wait until the D is below 20?
I have been exhausted post-surgery and since being on MP. My lungs are just getting to the point of not causing pain and constant coughing. I know exercise is not recommended, but I have not moved in 4 months. Is it OK to cover up and do some walking, maybe indoors at the Y, or bike in the evening? Is there a sunscreen I can use and swim at the Y?
I feel like I am falling apart. I have gained 10 lbs in 4 months. First the sarcoidosis diagnosis and now all of this. It is depressing.
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Sarcoidosis,lymphopathy. Diagnosed 7/26/08. 8/15/08 started MP; 11/7/08; 11/5/08 VitD24; Lipids: Chol350;LDL220;HDL>350;CRP>4
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Julia
Advocate (on leave)
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Posted: Wed Nov 5th, 2008 21:22 |
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Deedee,
Have you had a look at What do my lab tests mean? The section on triglycerides says, Elevated Triglycerides indicates (most probably) liver inflammation which will drop with resolution of that inflammation by treatment with the MP.
My cholesterol and/or triglycerides are very high. Will the MP help?
From 54 in August to 24 now is a commendable drop in 25-D. Your diet is working . Keep it up! There is no need to delay your progress on the MP, as long as you're aware that when the level comes down further, you may find yourself getting worse IP and having to slow up.
>Is there a point on MP and I can back on the niacin and red yeast and all, to get this back in line?
No need, the MP should eventually resolve this.
When should I be concerned about cardiac symptoms?
>Is it OK to cover up and do some walking, maybe indoors at the Y, or bike in the evening? Is there a sunscreen I can use and swim at the Y?
Yes, in moderation. MP exercise guidelines Sunscreens
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Always consult a physician
Essential Info; FAQ; Julia's story
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Deedee
Member
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Posted: Thu Nov 6th, 2008 00:13 |
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Thank you, Julia. These lipids are really freaking me out. I don't want to have a stroke or heart attack. What you have to say is encouraging. Thanks for the additional links I missed when I tried to search for this (frantically) on the MP site. I so hope to have my health restored, as so many MPers have and I am sticking to the plan.
I was told that the 54 Vitamin D was an incorrect lab. Quest sent notices to many people that their Vit D level was wrong and had to be repeated.
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Sarcoidosis,lymphopathy. Diagnosed 7/26/08. 8/15/08 started MP; 11/7/08; 11/5/08 VitD24; Lipids: Chol350;LDL220;HDL>350;CRP>4
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Deedee
Member
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Posted: Sat Nov 8th, 2008 01:40 |
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Being a bit fearful of any increased IP, and the MP site stating that high lipids could be from too much IP, I started Phase II with 1/2 of the normal starting antibiotic, which the directions say you can do if you are concerned with possible intolerable IP. I certainly do not want my lipids to go up MORE although I don't know how much WORSE they could get. Trig over 300, Cholestrol 350, LDL 220. My CRP was 4. This is a DRASTIC worsening on my lipids from 4 months ago when all was in normal range while on naicin, red yeast, COQ10 and not experiencing IP.
I have actually felt pretty good the last couple of days, but this was after about 3 weeks of pretty bad fatigue and productive coughing. I walked indoors and wrapped at the Y for 20 minutes, so as to not overdo it and I am being extremely careful not to consume sugars and keep my carbs very low in the hopes that this will also reduce the high lipids.
My Dr suggested some kind of Kinase in the a.m. on empty stomach to help with inflammation due to the very high lipids, and although I have asked him to check with the physician line, I don't think by his message he did as he said something about his intuitively feeling that it might be helpful to keep a rupture from occuring in the blood vessel until the inflammation is less (so as to avoid stroke/heart attack.)
So I looked up Kinase on the MP search and it said something in the Quercetin link discussing kinase and it sounded like the quercetin work to inhibit kinase which would mean what....that if to help IP you inhibit kinase so I should not take a kinase product? I couldn't understand the entire name and only caught the second half of the name "kinase" in the message he left for me, but it may have been meta or natti kinase.
There is no kinase anything on the forbidden drugs list on the MP site.
So is kinase a forbidden drug? Is Quercetin something I should consider to control the IP in order to reduce my out of control lipids?
Yes, I know that the MP will correct the high lipids eventually, but I am very concerned about in the meantime---having a stroke or heart attack. I am willing to SLOW DOWN the IP and protocol some in exchange for reducing my risk of heart attack or stroke.
Thank you in advance.
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Sarcoidosis,lymphopathy. Diagnosed 7/26/08. 8/15/08 started MP; 11/7/08; 11/5/08 VitD24; Lipids: Chol350;LDL220;HDL>350;CRP>4
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Deedee
Member
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Posted: Tue Nov 11th, 2008 03:16 |
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I have not heard back from you yet, but to save you time and effort I want you to know that my doctor did call Dr. Marshall this morning and the decision was made for me to not do anything but wait for the bacterial killing to correct my lipids. I will recheck my lipids in 2 months. I found some reassurance in reading amy proal's article "healing from coronary heart disease" at http://bacteriality.com/2008/01/26/cad/ including information that the Benicar may offer some protection while I wait for the bacterial killing to commence.
I have started phase II.
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Sarcoidosis,lymphopathy. Diagnosed 7/26/08. 8/15/08 started MP; 11/7/08; 11/5/08 VitD24; Lipids: Chol350;LDL220;HDL>350;CRP>4
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natalie17
Advocate
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Posted: Tue Nov 11th, 2008 09:03 |
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Deedee,
I am sorry your psot wasn't responded to. I'm sure you understand that we're all very busy and on top of that, not many medical professionals are looking over this site at the moment, so advocates (including myself) may have felt uncomfortable giving you any suggestions beyond what Julia was able to give you on your previous post .
Your Doctor is responsible for your care and I'm glad he made the decision to call Dr. Marshall - you have a good Doctor there .
Glad it was sorted out and all the best for phase 2.
Take 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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Deedee
Member
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Posted: Tue Nov 11th, 2008 13:24 |
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| I appreciate my doctors involvement, but it was actually I that pressed him to call Dr. Marshall or email to the professional site before I took any medication outside of the protocol. Yet, because my lipids are truly alarming, it was not something I could ignore. I understand you are all busy and reluctant to give advice that is out of the scope of your comfort zone and authority. I appreciate the work of all of you who volunteer. I do hope that as as the MP protocol continues to evolve, those of us on Phase II will be allowed access to the Phase II site with "read only" permission so that we can continue to manage our illness with the benefit of the experiences of those who have gone before us. As we all know, no one is going to be more interested in our own personal recovery than we are ourselves, even with the support of caring physicians. Thank you again for all of your help.
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Sarcoidosis,lymphopathy. Diagnosed 7/26/08. 8/15/08 started MP; 11/7/08; 11/5/08 VitD24; Lipids: Chol350;LDL220;HDL>350;CRP>4
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Deedee
Member
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Posted: Tue Nov 18th, 2008 02:52 |
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I am losing my hair. Every time I shower I have 4-8 strands of hair in my hands. Is this normal?
Do I starting counting day one of the Phase II cycle as the day I take the additional antibiotic, or is day one the day after I take the antibiotic?
I am starting to feel better. Thanks.
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Sarcoidosis,lymphopathy. Diagnosed 7/26/08. 8/15/08 started MP; 11/7/08; 11/5/08 VitD24; Lipids: Chol350;LDL220;HDL>350;CRP>4
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JoshR
Advocate
| Joined: | Mon Aug 18th, 2008 |
| Location: | Sydney, Australia |
| Posts: | 215 |
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Posted: Tue Nov 18th, 2008 07:27 |
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| For the phase 2 abx, start counting from the moment you take the tablet. You take the next one exactly ten days later. (This is exactly the same as how you count two days for mino.) So the first 24 hours after you take the tablet is Day 1, and so forth.
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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Joyful
Advocate
| Joined: | Fri Oct 19th, 2007 |
| Location: | USA |
| Posts: | 55 |
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Posted: Tue Nov 18th, 2008 08:06 |
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Hi Deedee,
I have had bouts of hair loss on the MP too. My hairdresser says that when the body is stressed, it seems to give a lower priority to hair and nail growth. Doing some research on my own, I found information that indicated that hair follicles go through 'seasons' (spring:new growth, summer:stable, fall:loss, winter:dormant) and that when the body is stressed, the new growth may be delayed.
If my hair started falling out more than usual again, I would personally take it as a clue that I need to take a little longer between ramping, or use other methods to slow the IP/herx.
Hope those thoughts are helpful to you.
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Lyme?1980 Babs?05 Bart?05 CFS?06 | 125D50 Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | 25D15 Oct08 | ABC of MP
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Deedee
Member
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Posted: Tue Nov 18th, 2008 15:31 |
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Yes, this is helpful. The hair loss did start in the middle of bad IP during Phase I at 75 and 100 mg. I also had terrible lipid reports during this time, which someone said may mean to try to manage the IP better.
I am happy to report that after prolonging my time on 100 mg until my IP was not so intense, and then entering Phase II I am feeling great. Hopefully, my hair loss will stop. Perhaps the IP will intensify when I ramp the mino back up during the Phase II. We will see, but today I have energy for the third day in a row, my cough is almost gone, I can breathe deeper, my bronchi does not hurt, I am not wheezing, my lymph nodes do not hurt has badly, my feet and legs are not cramping, and the "arthritis" in my thumb is slowly resolving.
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Sarcoidosis,lymphopathy. Diagnosed 7/26/08. 8/15/08 started MP; 11/7/08; 11/5/08 VitD24; Lipids: Chol350;LDL220;HDL>350;CRP>4
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Joyful
Advocate
| Joined: | Fri Oct 19th, 2007 |
| Location: | USA |
| Posts: | 55 |
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Posted: Tue Nov 18th, 2008 15:59 |
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It's good you are learning to recognize the signals your body is giving you to help you set the pace of the protocol.
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Lyme?1980 Babs?05 Bart?05 CFS?06 | 125D50 Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 | 25D15 Oct08 | ABC of MP
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