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Adrianne
Member in Phase 3
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Posted: Thu Mar 1st, 2007 18:47 |
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| Thank you so much Janet and Carole. Your input and support are most valuable. Was supposed to have my "D" test done today but had to cancel because I was too ill to go to the doctor's. Will re-schedule.
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Knochen
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Posted: Fri Mar 2nd, 2007 00:47 |
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Boy, you sound like you had exactly the same reaction to the 50mg mino dose that I had. 3rd round of it was the one that hit me like a brick. (and there I was, thinking I wasn't going to have much herxing! Ha!)
Take heart though, 50mg took me quite a while, but once I pushed through to 75mg, things got a lot more stable and predictable for some reason. Maybe enough of the "easy" bugs had been killed by then. I hope it's the same for you and that things get better in a few weeks. Keep it tolerable, you've got a bit of a hike ahead. You'll be amazed at how the herxes change from day to day. And that occasional Good Day is so nice!
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Reiter's Syndrome 25+ yrs, fatigue, joints, muscles, migraine, brainfog| 25D <4 ng/ml |Benicar May06|Ph1 June06|Ph 2 Sept06|Ph 3 Jan 07|NoIRs K-Cream Zinc Oxide cream - Always covered!
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jrfoutin
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Posted: Fri Mar 2nd, 2007 01:19 |
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Glad to see your post Adrianne. Adequate hydration, especially if you are sweating a lot, can probably lesson some of the dizzy sensation. Also..
Why am I dizzy and/or fainting?
Do take care when changing positions... getting up more slowly, holding firmly, etc, so that you do not fall and hurt yourself.
and do check with your Dr if necessary..
Dr Blaney wrote: I would suggest that the patient ensure that they avoid any other toxic exposure such as cleaning products, chemicalized foods, unnecessary meds supplements etc. plus adjust lifestyle to support the process. ie rest, fresh foods, water.
You can also rock back and forth between 25mg mino and 50mg, or try 3 day dosing if your Dr agrees. No rush, just steady.
Best to you Adrianne--Janet
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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Adrianne
Member in Phase 3
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Posted: Sat Mar 3rd, 2007 01:55 |
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Thanks for the encouragement Knochen! It sure is reassuring to know that others have walked down the path I am now on and have lived to tell about it! 
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Adrianne
Member in Phase 3
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Posted: Sun Mar 4th, 2007 01:32 |
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Hello everybody! I feel like I have been getting to know you all more each day as I read your posts.
I have been herxing more tolerably since I went back to 25 mg. of mino instead of 50. I needed a chance to catch my breath! Speaking of breath, one of my new herxes has been a dry cough which comes if I breathe too deeply. About 10 or so years ago I got a severe bronchitis which lasted for 3 months and kept me up most nights because that's when the cough was at its worst. I haven't had a cough since. I wonder if this is a symptom revisited from that past illness. In addition, my post-nasal drip continues constantly. All this is interspersed with big wet sneezes which I catch in big napkins because tissues just would not do the job. My left ear, which has felt stuffed up for many years, has developed an earache. I have occassional sharp pains in my knees too, just like I used to have when I had really severe CFS about 13 years ago.
I am scheduled to see my doctor on Tuesday and get a "D" test done. As I mentioned a couple of weeks ago, the last time I went I got the results of my CBC test and the doctor was very concerned about my elevated white blood cell count (15.17H x10E3/uL) and low iron. He said that he wanted to do another CBC the next time I came in because of this concern. He mentioned that if my white blood cell count were a little higher that he would start suspecting leukemia. As frightening as this sounds, from a MP point of view is this re-test necessary at this time? The response that I got from my initial posting of this information seemed to indicate that these test results were not unusual for people with Th1 disease. Please advise and thank you so much for your help as always!
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P.Bear R.N.
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Posted: Sun Mar 4th, 2007 20:06 |
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Adrianne, It is fine to get a CBC done on occasion to check your status; but not absolutely necessary everytime you go. Your levels will waver with herxing and many people will have a slight dip in hemoglobin and hematocrit upon starting Benicar and the MP. I would not be too concerned about leukemia with your WBC test result, but if it helps your doc feel better to track it that is fine.
All your symptoms really remind me of when I started the MP. It seems every big or little problem one has had over the years is revisited once the bugs start dying. best, P.B.
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jrfoutin
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Posted: Sun Mar 4th, 2007 21:36 |
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Adrianne,
I have always found What do my lab tests mean? to be accurate and very comforting, especially for questions you have right now. Good for you to know when you discuss your test results with your doctor.
Best to you Adrianne--Janet
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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Adrianne
Member in Phase 3
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Posted: Mon Mar 5th, 2007 15:57 |
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Hi everyone. Just a quick update. After a brief return to 25 mg mino from 50 mg, I took 50 mg mino Saturday night. Was somewhat okay on Sunday morning, although my sinus drip was still there, as always, and my nose was runny like a faucet. By afternoon, I started to get the chills again. I was shaking like a leaf coming home from church. The chills continued all afternoon and then I got a fever which went up to 101. In the evening I developed a bronchial cough and I hacked away several hours. This calmed down before I went to bed. I had some difficulty sleeping last night. The chills ended for the most part and then I just felt like I was burning up. I took a Tylenol PM and that helped me to get some rest.
I also kept getting a stabbing pain in the back of my left thigh. My neck is still stiff from last week. I don't know if that has anything to do with a herx.
Based on info that I got from this website regarding the use of the Waterlase in dentistry, I found a dentist nearby who uses it. I had my first appointment this morning. I had a cavity drilled -no needle and I didn't feel any pain or discomfort. Thanks to whoever posted that information!
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Carole
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Posted: Tue Mar 6th, 2007 01:12 |
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Hello, Adrienne!
I'm sorry to read that you had a rough day yesterday. Hopefully, you are feeling better today. Did you adjust your Benicar dosage during this time? If your physician approves in times of distress, 40 mg. of Benicar every 4 hours and/or 20 mg. in between can certainly make a difference in better tolerating immunopathology. Sadly, symptoms may linger for weeks or even months. You just need to focus on maintaining a "tolerable" immune response. 
I'm glad you at least had a successful visit to the dentist! Take care! . . . Carole
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PWC 50+ yrs| 20+ CFS FM Pituitary Thyroid IBS Cardiac OA Migraines +ANA Osteoporosis 2/04 Mediastinoscopy ~Sarc Story |1/04 1/06: 125D=85,34; 25D=41,14| AC
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Adrianne
Member in Phase 3
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Posted: Wed Mar 7th, 2007 19:45 |
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I took another dose of mino (25 mg.) last night. Again I woke up shivering and shaking. Husband put another blanket over me and came close to me to warm me up. It took a while before I settled down.
I have been having a real problem with temperature regulation. I am either shivering and feeling very cold or sweating and feeling very hot. My hands and feet are cold and clammy all the time. Today I have been coughing a lot. I've been extremely fatigued and so took a nice long nap. I sure am thankful that I'm in a position to be able to do this.
Thank you Carole and Janet for your feedback. My doctor agreed to postpone another CBC. I will be re-tested in 3 months. Also, I was wondering if when you adjust your Benicar dosing to ease symptoms, are you slowing down the bug-killing process? That would affect my decision to take extra Benicar, especially if the symptoms are somewhat tolerable.
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Carole
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Posted: Wed Mar 7th, 2007 20:37 |
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Hello, Adrianne!
I still have a little temperature disregulation on occasion, but nothing that I cannot manage. For instance, we have a heated mattress pad with dual controls. When I am chilled and cannot get warm, this always does the trick. On regular temperature days for me, I usually keep it on the next to the lowest setting just for comfort when crawling into bed. I will often turn it off during the night. On the other hand, I usually awake perspiring when it is time for my first Benicar of the day, which quickly regulates the situation.
One thing for sure, Adrianne, is that the extremes will one day dissipate. In the meantime, if it takes Benicar to do the trick, then that's an easy one! Don't be concerned about jeopardizing the destruction of pathogens because it will all fall into place. Please remember that your aim is for "tolerable" immune response. Rest assured that the additional Benicar, if your doctor approves at strategic times, will not present problems for concern.
Best wishes and take care as you pursue the pathogens! . . . Carole
Last edited on Wed Mar 7th, 2007 20:40 by Carole
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PWC 50+ yrs| 20+ CFS FM Pituitary Thyroid IBS Cardiac OA Migraines +ANA Osteoporosis 2/04 Mediastinoscopy ~Sarc Story |1/04 1/06: 125D=85,34; 25D=41,14| AC
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Adrianne
Member in Phase 3
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Posted: Sat Mar 10th, 2007 14:20 |
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Hello everybody!
The pattern is continuing. Ever since I started 50 mg. of mino I start with chills a few hours later and then fever which lasts for about a day and then when the fever is over, hot and cold sweats. If I am sleeping, I wake up drenched. I am very physically weak during those times and can't do much. I rest a lot and also spend lots of time on this very extensive website learning all sorts of wonderful things about the MP!
Just wanted to mention that I've had bursitis in my left hip a couple of years now, which prevents me from sleeping on my left side. I can't sleep on my back either because of constant post-nasal drip accumulation in my throat (even before the MP). So, my right side is the only option left and I think I am wearing it out. Anyway, the hip problem is an "-itis" and the sinus problem is probably an "-itis", too. I am so happy to be on a protocol that will address both of these issues.
Also wanted to mention that ever since being on the MP I have not had any bouts with migraine headaches! I have suffered with debilitating migraines since I was in my late twenties (although they have been less severe and less frequent the last few years). This is a major relief for me!
Thanks Carole for all of your encouragement. You approach things in such a practical, down-to-earth way!Last edited on Sat Mar 10th, 2007 19:45 by Adrianne
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jrfoutin
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Posted: Sat Mar 10th, 2007 20:35 |
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Adrianne,
Lottie says she keeps some dry towels close to bed for quick action. Such a simple solution I wish I had thought of it.
I found one hip got a lot of sleep action too and pillow adjustments have helped. My family does like the memory foam but there are many bed options right now to reduce pressure on any one physical (muscle/skeletal/organ) structure. Sleep does get better on the MP in so many ways.
It is fun to see how many "itis" issues get resolved. Glad you are here!--Janet
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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Knochen
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Posted: Sat Mar 10th, 2007 21:38 |
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Also wanted to mention that ever since being on the MP I have not had any bouts with migraine headaches! I have suffered with debilitating migraines since I was in my late twenties (although they have been less severe and less frequent the last few years). This is a major relief for me!
I had much the same thing happen. I had been declared a refractory case by a major headache clinic in the Boston area years ago, and my neurologist also threw up his hands and just tried to relieve the attacks rather than prevent them. I have been nearly 9 MONTHS without a migraine since starting the MP. Had a couple of days where it felt like one was trying to get started (you know the senstion I'm sure), but that was about it.
The fact that the MP is going to cure my other problems as well just makes it that much better. I didn't expect the migraines would just go *poof* as soon as I got up to speed on the benicar. I can hardly wait to walk into my neurologist when I am done and tell him how I did it. I suspect he'll listen, too!
I'm so glad that you are seeing some relief even at the beginning like I did, it makes it so much easier to stay the course because you know it's working. Take your time and expect some bumps along the way, every dosage level seems to have its own tricks.
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Reiter's Syndrome 25+ yrs, fatigue, joints, muscles, migraine, brainfog| 25D <4 ng/ml |Benicar May06|Ph1 June06|Ph 2 Sept06|Ph 3 Jan 07|NoIRs K-Cream Zinc Oxide cream - Always covered!
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Adrianne
Member in Phase 3
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Posted: Sat Mar 10th, 2007 22:31 |
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Thanks Janet! Yes, my sleep is so much better now. Not only do I sleep but it is a good, deep sleep. I even have lots of dreams. I know this because many of them are interrupted by my alarm for Benicar I do already have a memory foam mattress pad on the bed--on top of an already cushy mattress. But this is an improvement from when I also had an egg crate pad on top of that!
Towels are a great idea. Being wet is not very comfortable. Thanks again!
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Adrianne
Member in Phase 3
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Posted: Sat Mar 10th, 2007 22:45 |
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| Knochen, how very exciting that you have not had any migraine headaches for so long! You are much further down the MP road than I am, so this is very good to hear. This alone would make the MP worth it, but ah, there is so much more.....
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Adrianne
Member in Phase 3
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Posted: Tue Mar 13th, 2007 17:22 |
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The doctor's office just called with the results of my "D" test. It is 9.1. Yey!!  Of course, I never did that expensive "D" test initially, so I don't know where I have come from.
I am still at 50 mg. mino and still herxing pretty well on it. Each time I take it I experience hot and cold chills and fever. It knocks me out pretty well! On Sunday, while in church, I experienced a new symptom. My kidneys started to hurt and I was quite uncomfortable and weak. Since then they do not hurt as much but are somewhat sore and I feel them mainly with movement. Also, I noticed twice that my urine had a strange odor to it.
Other than that, I continue to hack away with that dry cough. I am thankful that it does not bother me when I am sleeping. My runny nose has stopped for the most part and everything is more thick and solid and I don't have much ability to taste or to smell. I continue to have travelling pains in various places such as my right ankle, my knees, back of right thigh and my feet (arches). When I don't have a fever my body temperature is quite low--about 96 degrees or a little above that. My blood pressure is quite low. My most recent reading was 70/42.
Since I have had some pretty unpleasant IP, I am upping my Benicar to q6h. That way I am less likely to have gaps in my blockade. I don't think there is any doubt in my mind now, based on my response to the MP, that I do have TH1 disease and that I am on the right track!
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Carole
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Posted: Wed Mar 14th, 2007 02:28 |
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Congratulations, Adrianne, on your progress thus far!
The symptoms you have mentioned can definitely be addressed by the MP. I have also experienced many of those, and I can honestly say that they are now behind me. In addition to the general all-over pain elimination, relief from chronic sinus issues has been very welcomed. Decades of sinus drainage and pressure, sore throats, and migraines have now been replaced with the ability to breathe freely through my nose.
Please remember that the Benicar dosage can even be adjusted to better tolerate the immune response. My lowest ever BP reading was once raised by an extra in-between Benicar.
Soon you, too, will be able to "smell the roses," Adrienne! Take care! . . . Carole
Last edited on Wed Mar 14th, 2007 02:29 by Carole
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PWC 50+ yrs| 20+ CFS FM Pituitary Thyroid IBS Cardiac OA Migraines +ANA Osteoporosis 2/04 Mediastinoscopy ~Sarc Story |1/04 1/06: 125D=85,34; 25D=41,14| AC
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MarkN
Member in Phase 3
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Posted: Sat Mar 17th, 2007 14:19 |
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| I am pleased to report that mom had some good brain herx yesteday Last edited on Sat Mar 17th, 2007 14:35 by MarkN
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General insanity (Aspergers ??), CFS, some joint paint ...
11/06:1,25D=37 25D=43, 12/09:25D=5.4 ... Avoid D 12/06 ... PhaseOne 1/07, PhaseTwo 3/07, PhaseThree 9/07
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Adrianne
Member in Phase 3
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Posted: Sat Mar 17th, 2007 14:28 |
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Thank you, Carole. I certainly am looking forward to "smelling the roses". I have a bit more cleaning-up to do, but at least I know that I am on my way!
My last dose of mino (50 mg.) resulted in no noticeable IP! Amazing, especially considering what I went through previously with the 50 mg. doses. On 3/15 (AM)I took my first dose of 75 mg. mino. I was kind of apprehensive, based on what I had experienced at the 50 mg. level. I kept waiting for signs of IP but nothing seemed to be happening. I took advantage of this little break to do some mild exercise. At night, when I went to bed, I started having a tickle in my throat which caused me to cough uncontrollably for about an hour. Then it stopped and I was able to sleep. Yesterday, I felt quite depressed and couldn't stop the tears. I am dealing with difficult circumstances but yesterday the glass was more half empty than half full. Perhaps that was another IP symptom.
I have been busy purchasing items which will help me cover up more during the coming months. It gets so hot and humid here I can't imagine how I will be able to cover up and survive. I got a dark, long-sleeved shirt made out of moisture-wicking fabric and a nice dark brown cotton blouse which I can throw over my indoor clothes when I have to go out. I have found a nice SP wide-brimmed hat which I will purchase this week. My son. Mark N, ordered a good supply of zinc oxide powder which we will mix into moisturizing cream for sun protection. Also just received a pair of 2% NoIrs. It's been getting brighter and sunnier and my 10% NoIrs don't seem adequate enough. Slowly but surely, it is coming together!
Last edited on Sat Mar 17th, 2007 15:28 by Adrianne
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