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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
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Posted: Tue May 17th, 2005 21:40 |
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Amy
I am not sure where you are up to as far as how many H since mino... if you have gone 72H and are still herxing you can take the next mino dose to slow it down again..
next time 48H may be enough.. achieving herxing which is tolerable is the key..
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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Ames
Board Staff
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Posted: Tue May 17th, 2005 23:30 |
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Right, I took another dose of mino after 48 hrs this morning, and I was expecting the herx symptoms that began yesterday to go away when I took the dose. However they continued through the afternoon.
Now around 7 I am starting to feel better. Is it possible the new mino dose took until now to kick in? How long does it usually take before the body begins to react to a dose of mino?
My herx symptoms have been prominent enough for me to notice them, but they are far from intolerable. Just a change from how good I was feeling on the Benicar before!
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CFS/FMS/osteopenia/severe insomnia Non -MP meds: Gabitril (16 mg),Trazodone (150 mg),Tramadol (20 mg) for pain. Light: Noirs (outside and bright lights), thick layers, sunscreen
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Ames
Board Staff
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Posted: Thu May 19th, 2005 19:58 |
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Ended up herxing yesterday, but once again, not until late in the evening on the day after I took the mino. The herx feelings were still present in the morning when I took my dose today.
My herx last night was not as pronouced as the one two days before, less head pain, a little more lung pain.
I moved up to 50 mg today since I have been one the 25 mg dose for a week and my herx symptoms have been very tolerable.
I wonder why it takes so long for my herx to occur...will a higher dose be expected to make the herx happen even later? Is it possible my immune system will learn to kick in sooner over time?
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CFS/FMS/osteopenia/severe insomnia Non -MP meds: Gabitril (16 mg),Trazodone (150 mg),Tramadol (20 mg) for pain. Light: Noirs (outside and bright lights), thick layers, sunscreen
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Frans
Member in Phase 2
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Posted: Fri May 20th, 2005 13:05 |
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Amy,
Maybe, just maybe it has to do with the speed of your metabolism. Maybe that is a bit slower than in other people, thereby explaining why the herx starts later than in other people.
You might also want to read this: Why do we take minocycline only every other day? Why do I feel worse on the second day?
It gives some further explanation.
Especially note that Meg says that maybe taking mino every 5 days works best for you. That can also be 3 or 4 days of course. Just experiment a little. I seem to recall that 3 days worked for you a couple of days ago?
Take care.
Sincerely, Frans
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Burn-out/nervous breakdown Jan01 125D 48 25D8.48 Ph1Nov06 ModPh2Jan07 Ph2Apr08 Cipramil Seroquel NoIRs lite exp r/t work cover up 25D3.9(Oct07)
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Ames
Board Staff
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Posted: Mon May 23rd, 2005 14:56 |
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Just alerting you to the fact that as of two days ago I increased my dose of mino to 75 g. Both doses resulted in a herx, the first herx being more powerful than the second. I have started to notice herx symptoms earlier, generally beginning mildly on the night of the first day, but at max intensity on the evening of the second day.
Reactions are still very tolerable, and although recognizable as herx reactions, not nearly as severe as I expected.
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CFS/FMS/osteopenia/severe insomnia Non -MP meds: Gabitril (16 mg),Trazodone (150 mg),Tramadol (20 mg) for pain. Light: Noirs (outside and bright lights), thick layers, sunscreen
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Ames
Board Staff
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Posted: Wed May 25th, 2005 17:48 |
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Just to update my current status, today I took my first dose of 100 mg mino.
I have herxed after every dose of antibiotic I have taken so far, except for the first dose.
As mentioned in another post, I take a bath about 6 hours after taking my mino. I have noticed this gives me a more prominent herx, which is still far from intolerable.
I generally take a bath around 2 in the afternoon, and begin feeling herx symptoms that same night around 7 o clock. The second day, the symptoms tend to be present, but may not be as intense as the first night. If I do take a bath again on the second day, my herx symptoms will stop temporarily, but then become severe again at night and last until the morning of the third day.
If I don't take a bath on the second day, my herx symptoms are gone by the third morning.
I have noticed that if I am herxing and drink a glass of green tea, my herx becomes slightly more severe.
My major herx symptoms are: a feeling of heaviness in the front of my head, with a slight headache, lethargy, weakness. More pain and stiffness in the glands in my neck, sore throats when I wake up on the morning of the second day, feeling very shaky, an increase in dizziness, feeling like I am going to faint, tingling feeling in head and in some areas of chest.
Although clearly noticeable as herx symptoms they continue to be very tolerable.
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CFS/FMS/osteopenia/severe insomnia Non -MP meds: Gabitril (16 mg),Trazodone (150 mg),Tramadol (20 mg) for pain. Light: Noirs (outside and bright lights), thick layers, sunscreen
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Ames
Board Staff
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Posted: Fri May 27th, 2005 16:43 |
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Hi. I would really like your advice about how often you think it would be best for me to take my dose of mino.
My herxes continue to be in the following pattern:
Day 1: Take mino, bath at 2
Day2: Feel fine all day, around 9, 10 at night begin to feel slightly bad
Day 3: Wake up feeling much worse, dizzy, symptomatic etc. Despite herx reaction I take another dose of mino. Despite new mino dose, herx continues throughout the day.
In essence, the day when I herx is reversed from what most people experience. I herx on the day I take the abx, and feel fine the day after I take the abx.
In a previous post, I said that I thought my herxes were beginning to happen earlier because I would feel bad on the afternoon and night of the first day. However, after further consideration, I think the symptoms are just a continuation of the symptoms produced by the previous dose and not the new dose.
I know that since I herx on the third day, I could wait and not take the abx until the following day. However, since it then takes another two days for me to herx, I would only end up taking mino every four days.
I do continue to herx despite the fact that I take a new dose of mino, however it is very possible that although I am not stopping the herx, I am diminishing it due to the new dose.
So after all this, my question is:
Do you think it is best for me to herx more mildly ever other day (because I am probably stopping the herx somewhat with the new dose)
Or would it be better to dose evey four days, and possibly get only one more intense herx over that time period?
Summarize: Which is better: many smaller herxes, or less frequent more powerful hexes?
Also, do you have any ideas why it takes me so long to herx? Could the bath I take on day 1 delay the herx reaction?
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CFS/FMS/osteopenia/severe insomnia Non -MP meds: Gabitril (16 mg),Trazodone (150 mg),Tramadol (20 mg) for pain. Light: Noirs (outside and bright lights), thick layers, sunscreen
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Frans
Member in Phase 2
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Posted: Fri May 27th, 2005 19:16 |
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Amy,
If I were you, I would go for a lot of small herxes. I believe you have suffered enough from our disease, so if the MP makes you feel better than before all the time with small herxes I would take it 
About why you seem to herx slower than others: maybe it has something to do with the speed of your metabolism, maybe someone on the staff can tell if that is even possibly a factor. It might also be that you CWD have nested deeper in your tissue than with others.
If you look at the wirostko photo Trevor shows on the DVDs you will see that the CWD are surrounded by some sort of layer of proteins or such. I believe that is called Biofilm. That could also mean that the mino at these doses don't weaken a lot CWD as yet.
But that may start happening in the next phase as you add other abxs that weaken them more and more. But as long as you are herxing they are dying and herxing heavier only makes life harder and doesn't make the journey considerably shorter, so you might as well enjoy the feeling-good-part
Sincerely, Frans
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Burn-out/nervous breakdown Jan01 125D 48 25D8.48 Ph1Nov06 ModPh2Jan07 Ph2Apr08 Cipramil Seroquel NoIRs lite exp r/t work cover up 25D3.9(Oct07)
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Ames
Board Staff
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Posted: Thu Jun 2nd, 2005 19:12 |
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Thanks for your input Franz.
I don't think my metabolism is the issue because I have a very very fast metabolism, so that shouldn't slow things down....
It is possible that my bacteria my be more entrenched at this period in time, or that my immune system takes longer than some other people's to kick into action.
In any case I have been on 100mg of mino for about 2 weeks now. I generally am in the pattern of starting to herx on the night of the second day and into the morning and afternoon of the third.
My herxes are fairly consistent, very tolerable, and I am confident that I am ready to add another antibiotic to my regimen.
Consequently, I would like to start Phase II, I sent an e-mail as the guidelines specify to Meg.
Hope to hear from any of the staff about this at your earliest convenience.
Thanks as always,
Amy
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CFS/FMS/osteopenia/severe insomnia Non -MP meds: Gabitril (16 mg),Trazodone (150 mg),Tramadol (20 mg) for pain. Light: Noirs (outside and bright lights), thick layers, sunscreen
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Frans
Member in Phase 2
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Posted: Thu Jun 30th, 2005 09:52 |
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Amy,
How are you doing now? Is it happy herxing for you?
Sincerely, Frans
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Burn-out/nervous breakdown Jan01 125D 48 25D8.48 Ph1Nov06 ModPh2Jan07 Ph2Apr08 Cipramil Seroquel NoIRs lite exp r/t work cover up 25D3.9(Oct07)
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Ames
Board Staff
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Posted: Sun Feb 26th, 2006 06:50 |
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Massage:
I've decided that I want to write out the events that happened to me over the last two months in a more concise fashion. I always love feedback, but I am sure everyone is very tired of hearing about these issues and there is no needd to respond to any of my posts. They are mainly to help me think about them more clearly.
1. 3 weeks before deep tissue massage:
Have been on 3 abx for 5 months. Although on very high doses of abx early on, my herx is still very tolerable. I was able to walk to the pharmacy and supermarket (each about a mile walk), go out to lunch and dinner with friends almost every day, watch endless TV, blast music, scrub and clean entire apartment, make meals and wash dishes, take a hot bath every night, go shopping for several hours, talk on the phone for hours...on the day I got my 25D tested and it was 29, I actually walked to and from the hospital, which is probably 2 miles away at least. I had strong herx, but I was still able to do plenty!
What did really started to bother me was the fact that my muscles felt like lead. Every morning I would wake up feeling glued to the bed. I knew that my muscles were probably full or toxins and debri and thought a deep tissue massage would help. I also started doing as much yoga as possible to try to release toxins from muscles. On the day before massage did and hour and 1/2 of yoga and felt fine.
2. December 8: Take new Ph2 dose.
December 10: Get deep tissue massage:
Man rubs muscles WAY to hard and for way too long. Leave feeling like jello, that evening keep crying for no reason , feel like I am in another world.
3. Day after massage:
Begin to feel terrible. All herx symptoms possible begin to hit me with a vengeance. Worst of all, I cannot breathe and my heart is pumping so fast I feel like I'm going to have a heart attack. Become very scared. Consider going to ER but know they can't help. Decide to try and sleep. Take as many sleep drugs as possible. I lie in bed gasping for breath and truly feel that I am going to die. For some reason I am calm. I close my eyes and believe I will not wake up.
4. Wake up next day! Muscle pain is beyond what I have every felt, however muscles feel light as if I am floating. Herx is horrible. Cannot move from sofa. Cannot stand without almost fainting. Cannot lift anything. Cannot stand noise. Don't even have energy to call my parents. Use all energy call doc and get Vicaden. Spend next week in state of delerium without moving, ordering food, STARVING Drop C immediately and lower mino to 50 mg
5. Mom comes to stay with me. Switch painkillers to Ultram. Muscle pain begins to get better but herx actually starts to get worse. Mom does everything, I don't move. We hardly talk, hurts head too much. No energy to even unwrap Christmas present myself. Mom gives me another massage because muscles hurt so badly (supposed to help regular person) Of course makes me even worse. From then on, too afrain to even touch any part of body because herx increases in that area....Test 25D 3 1/2 after previous test. It's 49 Has gone up 20 points with NO change in diet.
6. Mom leaves Jan 9. Herx still very bad. Able to make own food. Still can hardly type or talk. Fainting gets worse, severe pressure headache intensifies, ear pain begins. Mid January probably worst weeks of herx. Try every single herx dampening method and they all make me worse. Worst of all is time when I strech mino dose out to 3 days. On day 3 when mino at lowest concentration feel HORRIBLE. Worst day since day after massage
6. End of Jan:
Herx is slowly improving. Able to talk on phone. Still no TV or music. I have more energy. Try 100 mg mino. Takes away some brain herx so stay with it from that point on.
7. February through now:
Herx definitely much less, but same symptoms occur at much less intensity. Herx is tolerable! Can now lift, wash, cook, talk on phone...still aggravated by TV and music. Abke to tolerate hot showers and drink hot beverages. Still spend most of day resting.
And that's where I'm at.
The following quotes were sent to me via PM:
"Dr. Cecile Jadin warns specifically against massage while on an atibiotic protocol. She says it would increase symptoms by liberating too many toxins."
"A number of "lyme" people report endotoxin release after deep tissue massage, in short a herx provoking release. Of related interest people are more likely to test positive (reportedly) on western blot for lyme after deep massage."]
That's all for now.
Please please keep in mind that this situation was caused by ME. The moderators warned me repeatedly to lower my doses of abx before this incident which I did not do. I chose to do a deep tissue massage which is NOT a part of the MP protocol. This would NOT have happened if I had followed the protocol exactly as stated.
Also note that I believe as strongly as ever in the MP. I am as enthusiastic about this protocol as the day I started!
I would also like to say that Trevor and the moderators went above and beyond what they had to do in helping me these last months which I am very grateful for.
Good news: I really am starting to feel better!
What I hope most is that other people can learn from my mistakes and that they will not be repeated...
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CFS/FMS/osteopenia/severe insomnia Non -MP meds: Gabitril (16 mg),Trazodone (150 mg),Tramadol (20 mg) for pain. Light: Noirs (outside and bright lights), thick layers, sunscreen
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sunflower
Guests visiting Phase 1/2/3
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Posted: Sun Feb 26th, 2006 12:45 |
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ames,
thank you so much for posting this in the alumni forum so that everyone can have access to the info. i've not been able to read any of your posts in phase 2/3 forum, so this was absolutely fascinating to me.
when i started reading, i was in awe of what you were able to do (and a bit envious!). then, whammo--i simply can't believe that one deep tissue massage wreaked such havoc on your body --absolutely amazing! this is definately an object lesson, as you say, for all of us--we need to seriously heed the advice of TPTB on this protocol.
i'm so glad you are really starting to feel better and thanks, again.....sun
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lyme,fibro,candida,allergies,gerd,osteopenia/ pain,fatigue,dizzy,memoryloss20+yrs/ celexa,vicodin,cal-mag/beni 40mg q6h 11-05/phase 3,8-06/1,25d=34 25d=36,18,17,10,13,5,7
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Ames
Board Staff
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Posted: Sun Feb 26th, 2006 14:17 |
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Sun,
I'm glad you found my post helpful. You are right - I cannot stress enough that it is so important to follow this protocol exactly as stated and to listen to the moderators who are very knowledgeable.
I especially think that wearing Noirs at all times and very strict light avoidance are two of the keys to really making the MP work correctly. I have always done this, and feel that it has really helped my body herx. Members who try to cut corners in this respect end up regretting it about as much as I regret getting that massage during that point in my recovery.
It does sound like I was able to do a lot before the massage. However I was herxing really really badly at the time. Looking back I pushed myself way to hard during that time as well. I did do the things I stated, but I was in severe pain the entire time. I feel I put way too much stress on my body. Now I have greatly lowered my activity level and feel much much better. I think much of what I attributed to herx during time was actually pain caused by the wear and tear of my activities. I no longer take long walks at all, I only do breathing when it comes to yoga, and I spend a lot more time resting. My muscles feel about 90% better! So I also urge people not to follow my example and try to accomplish too many things when you are trying to heal at the same time.
Well..looks like I learned a few lessons right? But now that I have adapted my lifestyle, I feel like I am improving much more!
I wish you good progress in the time to come,
Amy
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CFS/FMS/osteopenia/severe insomnia Non -MP meds: Gabitril (16 mg),Trazodone (150 mg),Tramadol (20 mg) for pain. Light: Noirs (outside and bright lights), thick layers, sunscreen
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Ames
Board Staff
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Posted: Sun Feb 26th, 2006 16:02 |
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....continued from post above
While I'm at it I'll add a few other things....
If you do read my progress report (have fun!) please don't use the way I ramped up my abx as any sort of guide! Granted, my immune system was not functioning properly during much of early Phase II, but I hardly even gave the lower doses a chance. Big mistake. Each level of abx tends to generate different types of herx, and there is no doubt that I missed out on a lot of important herx by ramping so quickly. I'm pretty sure that if you ramp up as fast as I did you will end up doing what I am doing now...which repeating these doses at a later date.
Also, I was reading over my progress report and realized how chipper I sound during almost all of my posts. In the real world, I tend to focus on the positive aspects of my progress and keep my negative symptoms to myself. This is in part because I strongly dislike pity. I realize that I approached my progress report the same way. I basically glaze over most of my symptoms and hardly ever discuss the times when I felt quite bad. This positive approach may work ok in the real world, but is probably not very helpful to people who are really trying to analyze and learn from my posts. Basically, I can tell you that I was herxing very strongly and suffering a great deal during all of Phase II. I just don't want other people with CFS to read over my posts, wonder why they seem to be suffering so much more than me, and think something might be wrong . I was hurting pretty bad!
Alright, I think that's it!
Amy
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CFS/FMS/osteopenia/severe insomnia Non -MP meds: Gabitril (16 mg),Trazodone (150 mg),Tramadol (20 mg) for pain. Light: Noirs (outside and bright lights), thick layers, sunscreen
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BARNEY
Moderator
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Posted: Sun Feb 26th, 2006 17:00 |
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Ames,
Thank you for making this post, it took a lot of strength to say you were wrong.
So glad you are clarifying what you believe you should do on MP for everyone's sake.
Take good care of you and ..... here's to easier herxing for you girl....you have earned some relief.
HANG IN THERE, WE WILL MAKE IT!!!! BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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