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LeAnne
Member in Phase 3
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Posted: Sat Aug 13th, 2005 12:16 |
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August 13 2005
I started minocycline this morning at 25mg. I will just watch and see what happens. I still have a cold today and my muscles ache a little. I am happy to start the mino.
LeAnne
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Neuro-Sarcoidosis/lungs, spleen, nervous system, skin lesions, 125D66, MP 8/05, Ph1 3/06, Ph3 7/06, NoIRs, low lux home, cover up, 25D9 Sep07
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LeAnne
Member in Phase 3
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Posted: Sun Aug 14th, 2005 12:16 |
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Sunday, August 14th 2005
I woke up this morning and told my husband, "I really think I'm going to be healed from this disease." I feel so much better than I did a year ago.
Yesterday, I started taking the 25mg of minocycline. About five hours later I became very fatigued. My muscles felt weaker, and I had significant burning sensations, stiffness and cramping in my legs, arms and hands. I slept better last night than I had the previous four nights. I only woke up once. I can't wait to be able to sleep where I can dream and not wake up over every little sound.
This morning I still feel a little sluggish and muscle weakness, but the burning sensation has gone away. My muscle twitching is very minimal. I hope everyone has a wonderful day.
LeAnne
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Neuro-Sarcoidosis/lungs, spleen, nervous system, skin lesions, 125D66, MP 8/05, Ph1 3/06, Ph3 7/06, NoIRs, low lux home, cover up, 25D9 Sep07
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LeAnne
Member in Phase 3
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Posted: Sun Aug 14th, 2005 19:58 |
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I talked to my friend ,who is a microbiologist and immunologist. He watched the Chicago conference dvd'd. His comments to me were, "It was very informative". I said to him, "I don't know what you see when you study cell tissue, but it is truly a bacteria causing this. You saw the evidence." He didn't say anything to that. We talked about the immune system and suppression through use of steroid treatment, and he agreed to the dangers of the medication, also that autoimmune disease is something that starts out with different symptoms and that it cannot be detected early because symptoms mimic so many other ailments. He said, "The only problem with all of this information is that it is not backed by the NIH." I told him, "Dr. Marshall and others are working very hard to be heard, and we are all trying to educate you and get the word out. This is why I gave the information to him. I told him I was on Phase I of the treatment. I also told him that it was all a leap of faith for me, but that everything that has been said about this treatment regime, I have tested it first hand, and it is working. The blood levels proved to be true, and my symptoms have been managed exactly by doing what was recommended in the protocol without the use of steroids or other harmful drugs.( I am so thankful that I didn't have to suffer like some of you all have had to suffer by using these drugs.) I think this is because my sister has been on so many drugs and nothing has helped her. I basically refused to jump into the standard treatment. I studied, studied, studied, and finally found the MP." The microbiologist wished me well on my treatment.
LeAnne
Last edited on Sun Aug 14th, 2005 20:03 by LeAnne
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Neuro-Sarcoidosis/lungs, spleen, nervous system, skin lesions, 125D66, MP 8/05, Ph1 3/06, Ph3 7/06, NoIRs, low lux home, cover up, 25D9 Sep07
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LeAnne
Member in Phase 3
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Posted: Tue Aug 16th, 2005 12:02 |
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Tuesday August 16, 2005.
Hello. Yesterday I took my second dose of Minocycline, 25mg. About four hrs. later, I began feeling the burning, twitching, weakness and cramping. It didn't really hurt. It was just an underlying aggravation. Oh, I also experience ringing in my ears, which I have never had before.
Since I am tolerating this dosage, and it has not even been a week, can I move the dosage to 50mg?
LeAnne
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Neuro-Sarcoidosis/lungs, spleen, nervous system, skin lesions, 125D66, MP 8/05, Ph1 3/06, Ph3 7/06, NoIRs, low lux home, cover up, 25D9 Sep07
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Dr Trevor Marshall
Foundation Staff
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Posted: Tue Aug 16th, 2005 12:42 |
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LeAnne,
By the time granuloma start to form, a person has accumulated a very significant bacterial load, over many, many, years. It will take a while to kill all the pathogens and get totally clear of this disease. There are no medals for getting to the finish-line first, as if you had to suffer more to get there, what have you gained? So I always counsel taking things at an easy, steady pace. There will be times when the herx hits you unexpectedly, and disrupts your lifestyle, but generally you can get through the MP without significantly more suffering than the disease itself was causing. And each month you peg back a few of those annoying symptoms, one by one, and they just don't come back
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LeAnne
Member in Phase 3
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Posted: Tue Aug 16th, 2005 13:07 |
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Thank you. I have always been an impatient person. Having this illness has been teaching me alot about patience, faith, and trusting. In the end, we all win.
LeAnne
Last edited on Tue Aug 16th, 2005 13:09 by LeAnne
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Neuro-Sarcoidosis/lungs, spleen, nervous system, skin lesions, 125D66, MP 8/05, Ph1 3/06, Ph3 7/06, NoIRs, low lux home, cover up, 25D9 Sep07
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LeAnne
Member in Phase 3
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Posted: Wed Aug 17th, 2005 18:21 |
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Wednesday, August 17,2005
I felt pretty good this morning, and I slept a little better last night. I took the minocycline about four hours ago, and again, I start to feel the symptoms. I am very tired. The burning and pain has started to come back. Today and yesterday I had a few dizzy spells. Today my face and jaw feel stiff. Even my gums feel a little stiff. I know something is working because of the way I feel everytime I take the minocycline. I don't seem to experience herxeimer on the second day. Do most people experience it on the first or second? I know it doesn't really make any difference as long as you are herxing. Well, I need to lie down. I am very tired.
LeAnne
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Neuro-Sarcoidosis/lungs, spleen, nervous system, skin lesions, 125D66, MP 8/05, Ph1 3/06, Ph3 7/06, NoIRs, low lux home, cover up, 25D9 Sep07
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LeAnne
Member in Phase 3
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Posted: Thu Aug 18th, 2005 21:19 |
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Thursday, August 18, 2005
I have been very fatigued today. Muscle pain/cramps and burning continues but milder than yesterday. My cheeks and gums feel a little numb and inflamed. I have been dizzy today.
How do I tell if my dizziness is due to the disease or the Benicar. I know that is one side effect of the benicar. OH, my blood pressure was 79/51. I thought maybe this has something to do with my dizziness also.
I will take antiobiotics tomorrow. I am soooo bored. I hate not getting fresh air. By the time it gets dark, I am too tired to do anything or go anywhere, my children are home from school ect... Positive note.... I am on the Marshall Protocol, and I am going to get well!
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Neuro-Sarcoidosis/lungs, spleen, nervous system, skin lesions, 125D66, MP 8/05, Ph1 3/06, Ph3 7/06, NoIRs, low lux home, cover up, 25D9 Sep07
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
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Posted: Thu Aug 18th, 2005 21:26 |
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LeAnne
re "How do I tell if my dizziness is due to the disease or the Benicar. I know that is one side effect of the benicar. OH, my blood pressure was 79/51. I thought maybe this has something to do with my dizziness also. "
The ARBs and the antibiotics do not cause the problems; they make the problems evident. The cause is your inflammatory disease. Even if your problems become subclinical without the ARBs and antibiotics, they will remain (and get worse) until the Th1 inflammation is resolved.
Dr Marshall says: "All of those symptoms are caused by the disease, not directly by Benicar or the other antibacterial drugs. .... Your organs will be weak, that is caused by the disease. Keep reading and you will be able to isolate the symptoms and understand them more fully as part of the recovery process, not anything you should be unduly concerned with."
For further info re dizziness and blood pressure see BENICAR at the top of the Benicar Forum
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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LeAnne
Member in Phase 3
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Posted: Thu Aug 18th, 2005 23:49 |
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Thanks Barb. I remember reading that link now. That makes me feel more at ease.
LeAnne
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Neuro-Sarcoidosis/lungs, spleen, nervous system, skin lesions, 125D66, MP 8/05, Ph1 3/06, Ph3 7/06, NoIRs, low lux home, cover up, 25D9 Sep07
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LeAnne
Member in Phase 3
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Posted: Fri Aug 19th, 2005 22:58 |
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Friday August 19,2005
I am on a 10:00/4:00 Benicar schedule. Today, I forgot to take my 4:00 in the afternoon dose. I didn't remember to take it until nearly three Hrs. later (6:45)
Is it safe for me to take it again at 10:00 P.M.? This would be only three hrs. since the last dose. Or, should I ease my way back to the every 6 hrs?
I took the antibiotics at 9:00 a.m. and haven't had any herxing until around 5:00p.m. I didn't realize until about 6:30 p.m. that I hadn't had my Benicar. is it possible the reason I didn't feel any herxing until later today because I started to lose the blockade? Is this an indicator that I need to move up my dosage? It has been almost a week.
LeAnne
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Neuro-Sarcoidosis/lungs, spleen, nervous system, skin lesions, 125D66, MP 8/05, Ph1 3/06, Ph3 7/06, NoIRs, low lux home, cover up, 25D9 Sep07
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
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Posted: Fri Aug 19th, 2005 23:09 |
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LeAnne
see this FAQ What times should I take my Benicar? What if I forget a dose? keeping the Benicar and your set alarm and water nearby is a help..
It is not advisable to increase the mino till your Benicar Blockade is re-established and the herx assessed... approx 2 days..
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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LeAnne
Member in Phase 3
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Posted: Sun Aug 21st, 2005 22:33 |
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August 21, 2005,
I started 50mg of minocycline today. I started feeling burning in my arms and legs about one hour later. I have been very tired. I don't have alot of energy. I have had more pain in my neck and shoulders today. I have had a sharp pain on the side of my head all day today. My jaws and teeth feel a little stiff. I feel feverish, but I haven't taken my temperature. It may just be this hot and humid Georgia weather None of my symptoms have been intolerable.
LeAnne
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Neuro-Sarcoidosis/lungs, spleen, nervous system, skin lesions, 125D66, MP 8/05, Ph1 3/06, Ph3 7/06, NoIRs, low lux home, cover up, 25D9 Sep07
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DNStog
Moderator
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Posted: Mon Aug 22nd, 2005 05:14 |
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Hi LeAnne,
Your herx sxs on 50 mg Mino are pretty much what I experienced on 75mg Mino. Felt like I was getting the flu, stayed in bed for several days and ran a fever for two days...all herx. Had neck pain and my left jaw would stiffen when I tried to chew almonds...weird because it didn't react that way with other foods. Energy and strength continued to decline throughout Phase I. 
The good news is you're killing those dastardly buggers!
Wishing you well!
Donna, still cruising~~~~~~
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Sarcoidosis/skin, joints, lungs, nerves, Raynaud's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Lexapro, eye vits, Milk Thistle, Quercetin, Rx glacier, cover up, 05/09 25D5, 125D11
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LeAnne
Member in Phase 3
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Posted: Mon Aug 22nd, 2005 14:51 |
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Hello. On the phase I guidelines it suggest that you ramp the dosage up every week. I took 25mg (3x) for the first week and ramped it up to 50 mg yesterday. If I take 50mg every other day for the rest of the week and my symptoms are tolerable, am I suppose to ramp up again to the 75mg? I wonder if my body is responding the way it should be. Most people's post sounds like they are having a terrible time ramping up. The Phase I guidelines suggest it usually takes three months. Would it be abnormal if it only took me one month or close to that to get to 100 mg? I have heard some people do fine in phase I and that phase II is more difficult.
I know that my 1,25D indicated a significant amount of inflammation. I just don't know what my bacterial overload amount is. I know that I only started feeling really sick about a year to two years ago, even though I've had symptoms over the years. I'm not the typical patient who has suffered for years and have been on steroids. Any comments on this?
LeAnne
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Neuro-Sarcoidosis/lungs, spleen, nervous system, skin lesions, 125D66, MP 8/05, Ph1 3/06, Ph3 7/06, NoIRs, low lux home, cover up, 25D9 Sep07
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DNStog
Moderator
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Posted: Mon Aug 22nd, 2005 20:06 |
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Hi LeAnne,
I went through Phase I in about seven weeks with time off for a vacation. At 75mg, I had my toughest herx but was okay by the end of the second week. Even that herx was milder than many other MP'ers. Phase II has been pretty smooth for me as well with the exception of extreme fatigue and loss of strength. These two elements have much improved now that I'm at mid point of Phase II. As long as my herx sxs are tolerable, I ramp up. Phase II is much slower because the cycles last ten days AND the 2nd antibiotic stays in the system longer and may be stronger on the second dose than the first.
Reading most of the MP posts, IMO, indicates there are many of us who get through Phase I more easily than others. There are so many variables that one explanation, IMO, would not suffice.
Hope you keep cruising along.
Donna ~~~~~~
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Sarcoidosis/skin, joints, lungs, nerves, Raynaud's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Lexapro, eye vits, Milk Thistle, Quercetin, Rx glacier, cover up, 05/09 25D5, 125D11
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
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Posted: Mon Aug 22nd, 2005 20:09 |
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LeAnne
The phase One doc says in part...
"10. Increase the (every other day) minocycline, slowly, in small increments. The usual dosage increment is 25mg per week. Allow a week or more between increased doses to make sure your Herxheimer reaction is not more than you wish to tolerate. Different bacteria and tissues can be targeted by different levels of antibiotics, so there is a good reason to stay at each dose until the Herxheimer is minimal. .......
Do not try to 'speed up' therapy by using a higher dose of minocycline than the minimum needed to give you Herxheimer. These are very slow growing bacteria and there is no need to hurry. The dose of antibiotic that you can tolerate may change (both up and down) during the course of therapy. " << so there is no hurry.. and the herx may hit at any time, and a decrease may be necessary at any time..
Phase one is the training ground for us to experience and recognise herx..
for more info see also CELL WALL DEFICIENT BACTERIA AND THE MARSHALL PROTOCOL
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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LeAnne
Member in Phase 3
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Posted: Tue Aug 23rd, 2005 23:17 |
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I'm sorry, but I am having trouble telling if I am herxing. There hasn't really been any significant pain that is any different as far as pain level as before MP. So it is hard to know. Has anyone else had the same pain level remain the same as before the antibiotics? I guess I am so use to feeling like this that I am expecting to feel a significant difference. I know when I took 25mg ,I noticed burning afterwards, but on 50mg I don't seem to herx. I just had my 1,25 D re-tested a month or so ago. It was 60. I had it done again yesterday. I use a different lab this time. (quest)I just don't know what to think. This may be an irrelevant question, but could my blockad of benicar be too much or too strong? Should I decrease my 40 (6hr) to 40 (8hr)? Would this help me discern when I am herxing?
LeAnne
Last edited on Tue Aug 23rd, 2005 23:34 by LeAnne
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Neuro-Sarcoidosis/lungs, spleen, nervous system, skin lesions, 125D66, MP 8/05, Ph1 3/06, Ph3 7/06, NoIRs, low lux home, cover up, 25D9 Sep07
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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Tue Aug 23rd, 2005 23:46 |
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LeAnne
It is early times yet. Some Members' symptoms are better on MP than pre MP because MP enables management of symptoms with the meds.. see the FAQs How does Benicar work? Why is it superior to other ARBs? Should I take it every six or eight hours?
Observations of Jarisch-Herxheimer Reaction in Sarcoidosis Patients Applies to all Th1 illnesses
Why isn't the Marshall Protocol working? what am I doing wrong? is a good herx checker FAQ.
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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LeAnne
Member in Phase 3
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Posted: Wed Aug 24th, 2005 11:40 |
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Well, I spoke too soon yesterday. I had a terrible night! I couldn't sleep. My arms and hand were in sooo much pain with burning and muscle pain that it went straight to the bone! My arms are very weak and numb today. I guess I was expecting to herx sooner than I did because of the previous days I seemed to have responded sooner. This morning I feel burning and pain in my spine. My arms still hurt. If you've ever had surgery or had muscle cut, that is how it feels They throb as if I just had surgery. I told my husband, "I think sarcoidosis and other TH I disease is the seconds silent killer." (Cancer is usually called the silent killer) I never felt this kind of pain as the bacteria slowly grew had taken over my body until it becomes disease. When I herx, It is almost like these bacteria are trying to get back at me for getting rid of them or kicking them out of their home. I am becoming more in tune with my body. I know I am in the early stages, and I will try to be more patient. I just want to make sure that it is working for me. I told my husband last night. I was moaning in pain, and said, "I know this is going to sound stupid, but I am so thankful for this, because I know the therapy is working" I'm so thankful I didn't have to be blinded into thinking immunosuppressants would treat me. I tried to go back to sleep, but we had severe thunder and lightning storms all night long.
LeAnne
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Neuro-Sarcoidosis/lungs, spleen, nervous system, skin lesions, 125D66, MP 8/05, Ph1 3/06, Ph3 7/06, NoIRs, low lux home, cover up, 25D9 Sep07
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