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DON
Member in Phase 3
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Posted: Fri Aug 6th, 2004 23:53 |
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.......... of either Benicar or Minocycline? 5'6" 120 lb women vs. 6'4" 240 lb male.
Ive noticed that many docs in the past have had a tendency to prescribe at the upper limits of medication for me.
Although I am feeling relatively well 3 weeks into the Benicar, week and a half into the minocycline.........about the only herx like experience I have felt was day 7 of Benicar only, and that was a mild 15 hour flu-like body warming with slight body ache.
I keep expecting something like that with the minocycline, but nothing, I am at 50mg now, none of the usual brain fog or morning fatigue, although the tinnitus is roaring as usual, which I have always used as a barometer for my periods of high infection state.
Other barometers of stress and exertion fatigue, I have not been able to use, due to their lack there of, because of my restrictions to indoors to eliminate sun/IR exposure as much as possible.
I know I shouldnt be wishing for the herx, but I feel I am missing something here, should I be accelerating the minocycline dosage due to my size?..........Don
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CFS/LUPUS/BEHCETS,1,25=44,Ph1July04,Ph2Sept04, Ph3 Nov04,25D=14 Nov07, Klonopin, Noirs, minimum light exp. coverup.
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Dr Trevor Marshall
Foundation Staff
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Posted: Sat Aug 7th, 2004 02:34 |
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Don,
No, but it does make sense that your minocycline will quickly go to 100 mg every 48 hours, if antibiotics you have taken previously have wiped out all the common species.
If so, I would still suggest staying on the 100mg of mino q48h for a total of 3-4weeks, and then transitioning early (and VERY carefully) to phase 2.
I am surprised the Tinnitus has become louder. On Benicar alone that should be softer than it was before the MP. What Benicar are you taking? 40mg every 6 hours? Why not ask Doc to allow you 40mg every 4 hours for a day, and see if the Tinnitus settles down?
As for dosing vs weight, the bigger issue is the number of angiotensin receptors in your body which you need to block. This is dependent both on the amount of inflammation (for there are A-II receptors in all the inflamed Th1 tissue) as well as the total body mass.
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DON
Member in Phase 3
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Posted: Sat Aug 7th, 2004 07:06 |
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>I am surprised the Tinnitus has become louder..On Benicar alone that should be softer than it was before the MP.<
> What Benicar are you taking? 40mg every 6 hours? Why not ask Doc to allow you 40mg every 4 hours for a day, and see if the Tinnitus settles down?<
Hi Doctor Marshall, the first 60 tabs of 40mg Benicar, taken evey 6 hours were sourced from Walgreens Drugs showing Sankyo as the mfg., the next 98 tabs taken every 8 hours are 40mg Olmetec of German source also showing Sankyo as the mfg.
I'll try the 40mg Benicar at 4 hours for a day to see if the tinnitus is affected, although the tinnitus is a distraction it is something I can live with......thanks, Don
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CFS/LUPUS/BEHCETS,1,25=44,Ph1July04,Ph2Sept04, Ph3 Nov04,25D=14 Nov07, Klonopin, Noirs, minimum light exp. coverup.
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Dr Trevor Marshall
Foundation Staff
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Posted: Sat Aug 7th, 2004 09:04 |
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Don,
The tinnitus is an indication that things are not working as they should. I would be surprised if a big guy like you could get by with a dosing interval greater than 6 hours. Talk with Doc about trying that, and also 40mg every 4 hours.
The other thing to be real careful about is that the pills have "C-15" on the back of them. You don't want to be using the Sankyo tablets which are a combination of Benicar and HCTZ. They will make you sick.
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DON
Member in Phase 3
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Posted: Sun Aug 8th, 2004 00:37 |
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>The other thing to be real careful about is that the pills have "C-15" on the back of them. You don't want to be using the Sankyo tablets which are a combination of Benicar and HCTZ. They will make you sick.<
Both tablet sources have the C 15 designation and I dont see any reference to "hydrochlorothiazide-HCT", although the Walgreens source came without the mfg literature, and the european source came only with what I think is german language description.
I dont feel ill, so I am assuming this is the correct Benicar.......Don
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CFS/LUPUS/BEHCETS,1,25=44,Ph1July04,Ph2Sept04, Ph3 Nov04,25D=14 Nov07, Klonopin, Noirs, minimum light exp. coverup.
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DON
Member in Phase 3
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Posted: Sun Aug 8th, 2004 00:50 |
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Dont know if this is also a factor my ACE and CRP were also elevated prior to my MP start;
ACE= 45.2.................RANGE= <35
CRP= 1.3...................RANGE= <.55
I will also ask this in a separate posting, for those that might be interested........do the ACE and CRP tests need to be repeated along with the 1,25 D testing?.......Don
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CFS/LUPUS/BEHCETS,1,25=44,Ph1July04,Ph2Sept04, Ph3 Nov04,25D=14 Nov07, Klonopin, Noirs, minimum light exp. coverup.
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DON
Member in Phase 3
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Posted: Sun Aug 8th, 2004 00:59 |
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....................need to be repeated along with the 1,25 D testing?.......Don
Dont know if this is a factor my ACE and CRP were also elevated prior to my MP start;
ACE= 45.2.................RANGE= <35
CRP= 1.3...................RANGE= <.55
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CFS/LUPUS/BEHCETS,1,25=44,Ph1July04,Ph2Sept04, Ph3 Nov04,25D=14 Nov07, Klonopin, Noirs, minimum light exp. coverup.
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Foundation Staff
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Posted: Sun Aug 8th, 2004 01:38 |
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Don,
Repeat testing of inflammatory markers will only confirm what your symptoms are telling you. That is, you will feel better as the MP progresses and the inflammation gradually subsides.
Some inflammatory markers (such as sed rate, ACE and triglycerides) increase in the initial stages of the MP because of the Herxheimer inflammatory response and the body's compensatory mechanisms. This is not a cause for concern. Many doctors like to retest kidney function to confirm the safety of the MP medications.
Knowing the level of 1,25-D is most import before commencing the MP. After that, you can expect it to gradually lower while waxing and waning with antibiotic treatment. Doctors like to see numbers to verify subjective symptoms so periodic retesting is done at six month intervals but it is not mandatory. Your symptom resolution will tell the story.
Meg
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bpeck
Banned
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Posted: Sun Aug 8th, 2004 02:02 |
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Don:
Have you had tinnitus right along - prior to Benicar & the MP?
Tinnitus can either be a drug side effect, an impairment in the choclea ( which usually doesn't change in loudness or tone), OR can be a central brain problem which CAN change in tone, tune, and loudness.
After having what I thought was permanent unchanging tinnitus in both ears for years, it changed when I went on abx therapy for Lyme - it waxed and wanned - changed loudness, went away, came back and even became two changing notes in one ear. It went away permanently after 1.5 years off and on abx. Well permanently so far...
Barb
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DON
Member in Phase 3
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Posted: Sun Aug 8th, 2004 02:26 |
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Hi Barb, the tinnitus was one of the first noticeable symptoms, along with fatigue, that accompanied the long term onset of my CFS disease, so medications are not a factor that I can see although they are a factor in the variation in the intensity in noise that I experience.
I seem to be going thru the same variations that you experienced but without the complete remission.
Pennyhoule, in one of her postings, explained that tinnitus along with one other symptom, were the last to disappear with the MP.
I guess I am hoping for the same......Don
>Don:
Have you had tinnitus right along - prior to Benicar & the MP?
Tinnitus can either be a drug side effect, an impairment in the choclea ( which usually doesn't change in loudness or tone), OR can be a central brain problem which CAN change in tone, tune, and loudness.
After having what I thought was permanent unchanging tinnitus in both ears for years, it changed when I went on abx therapy for Lyme - it waxed and wanned - changed loudness, went away, came back and even became two changing notes in one ear. It went away permanently after 1.5 years off and on abx. Well permanently so far...
Barb<
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CFS/LUPUS/BEHCETS,1,25=44,Ph1July04,Ph2Sept04, Ph3 Nov04,25D=14 Nov07, Klonopin, Noirs, minimum light exp. coverup.
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bpeck
Banned
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Posted: Sun Aug 8th, 2004 15:31 |
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Don:
I had alot of symptoms that waxed and wanned - tinnitus being odd one that I couldn't seem to correlated with anything once it started changing.
It continued for 3 months or so after I stopped all my abx, then just stopped. I have no explanation for this. I did an extensive search on tinnitus, and found that changing tinnitus is related to the brain and not the ear, so I don't know for sure - but since I had neuro Lyme, I have to attribute it to Lyme - which I really hadn't before. I thought it was a permanent condition for me.
Barb
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DON
Member in Phase 3
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Posted: Sun Aug 8th, 2004 23:42 |
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Day 20 on Benicar 3x 40mg, day 11 on Mino, now 75mg every 48h. 125/74 bp-68 hr.
Very ill last night, felt exactly like mild to moderate food poisoning; chills, nausea, burping, no sleep----may have been food poisoning, ate take-out Chineese mushroom chicken, rice and noodles-----dont think this was a herx but you never know, feel back to normal 13 hours later and will start back in with the Benicar.
Double checked that the German sourced Benicar is the correct stuff with the C15 designation, white, oval in shape, and not the stuff with HCT.....Don
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CFS/LUPUS/BEHCETS,1,25=44,Ph1July04,Ph2Sept04, Ph3 Nov04,25D=14 Nov07, Klonopin, Noirs, minimum light exp. coverup.
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DON
Member in Phase 3
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Posted: Fri Aug 13th, 2004 22:55 |
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Day 25 on Benicar 3x 40mg, day 16 on Mino, now 100mg every 48h. 118/79 bp-66 hr.
Upped the mino to 100mg, no noticeable herx, sleep good, no brain fog, tinnitus still persists even with one day trial of Benicar at 5x 40mg.
Own PCs are down so having to use libraray machines to make the updates, maybe a little slow in my updates until I get my own machines back on line....Don
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CFS/LUPUS/BEHCETS,1,25=44,Ph1July04,Ph2Sept04, Ph3 Nov04,25D=14 Nov07, Klonopin, Noirs, minimum light exp. coverup.
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DON
Member in Phase 3
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Posted: Thu Aug 19th, 2004 19:41 |
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Day 31 on Benicar 3x 40mg, day 22 on Mino, now 150mg every 48h. 129/79 bp-68 hr.
Upped the mino to 150mg, no noticeable herx, sleep good, no brain fog, tinnitus still persists but modulates still.
I will order another test panel session within the next 3 weeks in order for preparation for phase 2 of MP and a pending Dr. visit in September.
Own PCs are still down so having to use libraray machines to make the updates, maybe a little slow in my updates until I get my own machines back on line....Don
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CFS/LUPUS/BEHCETS,1,25=44,Ph1July04,Ph2Sept04, Ph3 Nov04,25D=14 Nov07, Klonopin, Noirs, minimum light exp. coverup.
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jolbell69
Health Professional
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Posted: Thu Aug 19th, 2004 22:47 |
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Dear Don,
I`m a lttle worried by you saying that you are taking 150mg Mino QOD. The MP says to only go as high as 100mg QOD!! Was this a typo?
Jo. (UK)
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DX:ChronicBorreliosis&Bartonella,ME/CFS,AutoimmuneThyroid&Hypoadrenia.
TX:Armour90mg,Prozac.Started MP:19may04.
25,D=16.7ng/ml,(Jan05).Benicar,40mg,q6h.Restart 8May09 after 5months break.VitD,25=8ng/ml(May09)
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DON
Member in Phase 3
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Posted: Sun Aug 22nd, 2004 00:28 |
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Day 33 on Benicar 4x 40mg, day 24 on Mino, now 100mg every 48h. 118/75 bp-68 hr.
Hi Jo, no, short duration probes, of less than one week, of increased benicar and minocycline were tried in order to illicit a response, due to size issues, but no changes have occurred.
No herx reactions, good sleep, no brain fog, tinnitus still persists. Will return to max. phase 1 dosage levels of 40mg benicar 4x, 100mg mino x48hrs until I transition into phase 2, dependant upon test results compiled within next 3 weeks.......Don
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CFS/LUPUS/BEHCETS,1,25=44,Ph1July04,Ph2Sept04, Ph3 Nov04,25D=14 Nov07, Klonopin, Noirs, minimum light exp. coverup.
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DON
Member in Phase 3
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Posted: Wed Aug 25th, 2004 20:08 |
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Day 37 on Benicar 4x 40mg, day 28 on Mino, now 100mg every 48h. 127/81 bp-66 hr.
Still no major noticable herx reactions, good sleep, no brain fog, tinnitus still persists, some intermittent cold feet at night, and fatigue levels are no problem with only indoor activity.
Put in a request to doctor for D-Metabolite test panel and Phase 2 instructions for transition into Phase 2 protocol.......Don
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CFS/LUPUS/BEHCETS,1,25=44,Ph1July04,Ph2Sept04, Ph3 Nov04,25D=14 Nov07, Klonopin, Noirs, minimum light exp. coverup.
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DON
Member in Phase 3
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Posted: Thu Aug 26th, 2004 22:47 |
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How critical is it to use the recommended Quest or Specialty lab services listed by this website?
In preparation for transitioning from Phase 1 to Phase 2 I petitioned my doctor to run the D-Metabolite, ACE, and other tests thru the recommended labs but he decided to process the bloodwork thru Unicorp Labs, which has a blood draw facility in his complex (this is not the Labcorp which is on the do not use list).
I mentioned the need for frozen blood samples to each and every person I came in contact with during the blood draw process, and was assured each time this would be followed. The Unicorp blood draw form noted the need for frozen samples of the 1,25-d test.
Hope I havent screwed this up and have to re-do things.
You would think my middle name was "Murphy" this week, because if something can possibly go wrong, it has..........Don
Last edited on Thu Aug 26th, 2004 22:48 by DON
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CFS/LUPUS/BEHCETS,1,25=44,Ph1July04,Ph2Sept04, Ph3 Nov04,25D=14 Nov07, Klonopin, Noirs, minimum light exp. coverup.
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Foundation Staff
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Posted: Thu Aug 26th, 2004 22:58 |
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Don,
I think you can relax. It sounds like you were very vigilant to ensure that your blood samples would be frozen. It is only Labcorp that have previously said they would freeze samples and then did not.
Meg
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DON
Member in Phase 3
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Posted: Thu Aug 26th, 2004 22:59 |
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Why arent there any posting experiences under the topic of discussion "Full protocol plus Quercetin"?
Seems like there are plenty of people using the stuff by the activity mentioned under the "general discussions", I would think posting experiences under the "Quercetin" heading might be a big help to those having herxing problems so that they might have a better knowledge base to draw from.
Maybe nobody has noticed this topic area.......Don
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CFS/LUPUS/BEHCETS,1,25=44,Ph1July04,Ph2Sept04, Ph3 Nov04,25D=14 Nov07, Klonopin, Noirs, minimum light exp. coverup.
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