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lightomni
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Posted: Fri Jun 29th, 2007 13:25 |
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Lightomni's tests
Start Benicar 6/9/07. Started mino 25mg q48 6/23/07. Avoiding light/wearing NoIR's; avoiding D in foods; off supplements. 15mg Armour thyroid daily.
Autism 17 yr old
Wearing 98%NoIR lenses set in WileyX foamcup removable lense sunglasses (10% and 40% lenses on hand); Avoiding D in foods 4 weeks now & began to have real symptoms at 3 weeks.
Pre-MP had also begun to have photosensitivity and flu-like symptoms with D avoidance (5th week). We had to feed Omni eggs the last 3 weeks of school so he could get through the year!!
Until this week was one big mush of symptoms, steadily increasing as D levels came down. This week there is a first day increase in severity. Typical symptoms include photosensitivity, muscle and joint aches, malaise, numb extremities, nausea, flushing (red, hot skin) for a couple hours sometime soon after taking mino. Most consistant and prominent symptoms are photosensitivity and dizziness with a big dose of inner ear misinformation (e.g. feels like he is about to fall over to the left)
I've noticed a shorter fuse, which he is handling by resting/avoiding stimulation. Frequently find him lying down in the (dark) guest room. Avoids coming into ligher area of house or outside -without need for reminding (makes him immediately uncomfortable). Physical exertion has become much more difficult for him, though he did manage to mow the lawn last night just after the sun set. Spent a few hours recovering from that.
Lightomni joins RDMN and Mysticalfaerieflute on the MP (We may have to hire the lawn done for the next year since we are all going to be gimps )
My biggest concern just now is extracting specific information from Lightomni and to teach him to be aware of and report small symptoms before they grow out of control. The ODD/explosive piece is going to get in the way a bit here, but we have lots of practice and will get through it.
This is UDXmom.
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Aspergers PDD-NOS ODD anxiety hypothyroid adrenal insuf obesity CFS 125D40 Ph1Jun07 ModPh2Aug07 Ph2May08 Armour thyroid gaba prn 5HTP & R-Alpha lipoic acid for intol sxs 25D8 (Oct07) NoIRs low lux home limited outings covered
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jrfoutin
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Posted: Fri Jun 29th, 2007 13:45 |
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Mom,
You have a household of immunopathology to keep track of. It may be difficult for you or your family members to sort their responses with all the Herx flying about.
I hope you can consider charting so you can see start to see some of the big picture patterns for each as well as the day by day immunopathology management and nurse moderator insights from daily posting.
Downloadable MP Documents, Phase 1
I'm glad you are posting frequently for each individual. Kudos for your courage and effort on their behalf. You are amazing.--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
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lightomni
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Posted: Fri Jun 29th, 2007 13:46 |
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Forgot to mention one thing. Lightomni has had a surgery recently (3 years ago) to reimplant a stage 4 refluxed ureter. We were unable to restore function to the left kidney and it is still there and is a remote infection risk, apparently.
The past 3-4 months Omni has had occasional pain/pressure in the right kidney area and we will be getting an ultrasound and seeing the urologist in a couple weeks. MP Doc believes that MP will provide a measure of protection due to antibiotic and that strain on good kidney should not be excessive.
Urologist's nurse indicated that Omni's right kidney MAY be subjected to reflux from the right ureter as that sometimes occurs; and the size of the kidney will indicate whether or not we should be concerned. She said even if there is reflux, at his age a wait-and-see approach may be recommended, provided there is no evidence of kidney malfunction or small size.
Past ultrasounds indicate that Omni did have, at time of surgery, a smaller-than-expected bladder and right kidney. I think there are 2 possibilities: structural developmental damage will force us to stop MP and repair or replace right kidney before we can proceed(God forbid); OR pathological damage has/is being done and MP should be continued, albeit carefully so as not to overwhelm present kidney function until normal development/function can be restored.
I am going to have to bring the urologist up to speed on MP. Wish me luck.
UDXmom
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Aspergers PDD-NOS ODD anxiety hypothyroid adrenal insuf obesity CFS 125D40 Ph1Jun07 ModPh2Aug07 Ph2May08 Armour thyroid gaba prn 5HTP & R-Alpha lipoic acid for intol sxs 25D8 (Oct07) NoIRs low lux home limited outings covered
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lightomni
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Posted: Fri Jun 29th, 2007 13:48 |
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| Yup, thanks, Janet. We have been charting. I appreciate your support, too!!
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Aspergers PDD-NOS ODD anxiety hypothyroid adrenal insuf obesity CFS 125D40 Ph1Jun07 ModPh2Aug07 Ph2May08 Armour thyroid gaba prn 5HTP & R-Alpha lipoic acid for intol sxs 25D8 (Oct07) NoIRs low lux home limited outings covered
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lightomni
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Posted: Wed Jul 11th, 2007 15:00 |
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40mg Benicar q6hr round the clock; 50mg mino q48hr began 7/10/07; NoIR lenses in WileyX frames; avoiding D and outdoors; some computer use without glasses, still .
This is UDXmom.
We decided to begin the 50mg because Omni generally seemed to be stable at a not-too-uncomfortable point. Symptoms were general malaise/pain/nausea and dizziness without the spikes of numb extremities or bad headache, etc.
Omni tried a q72hr 25mg mino just before starting the 50mg and became uncomfortably ill on the 3rd day. Does this signify that we need to flush out more at the 25mg 3 day level and have moved too fast to 50mg; or that we should avoid 3 day dosing? My instinct is to wait until the end of a dosing period and do a couple 3 day cycles, BUT:
He also does not have as much of a up-down cycle as I expected. This could be because of the amount of time he's spending in front of a computer or TV; but in the fall we will merely exchange that IR exposure for what sunlight/florescent lighting is present in a high school. Is it worth it the battle to remove the "screens" for 2-4 days to determine how much is IR and how much is light-exposure related? It may be important, also, to "highlight" for Omni the consequences of light exposure.
OR: If the 50mg mino doesn't draw out a more pronounced cycle, should we consider a frequent dosing trial? My concern is not so much for this summer, but to have skills for later when he is in school and attempting phase 2. I have scheduled a 25-D test for late July also; which should shed some light on this situation.
After writing this I have decided to insist on a 3-4 day light/monitor-free trial first. I am finding that the D-free diet I am eating with my family is causing some muddled thinking, but this "conversation" has helped. Thanks!
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Aspergers PDD-NOS ODD anxiety hypothyroid adrenal insuf obesity CFS 125D40 Ph1Jun07 ModPh2Aug07 Ph2May08 Armour thyroid gaba prn 5HTP & R-Alpha lipoic acid for intol sxs 25D8 (Oct07) NoIRs low lux home limited outings covered
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Aussie Barb
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Posted: Wed Jul 11th, 2007 18:36 |
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Thank you Mom
As you have reported the D free therapeutic probe on yourself is telling. About avoiding sun exposure and /or Vitamin D..
Some of my family members appear to have Th1 inflammatory symptoms. What should they do?
Not all immunopathology is a definite wax and wane.. and it may change at any time. Suggest that if Omni's symptoms are tolerable - that the monitor separation may be unnecessary and perhaps isolating for him. There will be opportunities to gain experience re light exposure.. there almost always is for most..
Natural light > protect skin and eyes..
Artificial light > protect eyes / not skin..
The first recommendation to minimise symptoms.
If your Dr agrees: to minimise symptoms at any time, or if going out - as well as protecting from light, you can take an extra half tablet (20mg) Benicar any time during the cycle, or adjust the dosage to 40mg Q4H. see also in BenicarQuiklink many Members report chewing or sublingual gives faster absorption/relief..
Some find:
extending to 3 day dosing achieves more tolerable symptoms.
or some find 3 day dosing may increase immune response.
Dont let symptoms go to intolerable, take your dose at a shorter time if necessary to hold your symptoms at tolerable.
Frequent dosing is used by some when required to dampen immunopathology.
Why and when do you recommend taking Minocycline frequently?
Suggest that unless symptoms are intolerable the mino QOD is the way to go, and increasing after at least a week at each dose level when symptoms are tolerable enough to accomodate more.
and as you have found, posting is helpful.. to yourself and to others reading. thank you.
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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RDMN
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Posted: Wed Jul 11th, 2007 21:14 |
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Thanks much, Barb. I shall calm down and not read so much into Omni's symptom differences from other family members. He is tolerating the 50mg well, with reports only of increased swelling and stiffness in joints.
UDXmom
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FM, psoriasis, MCS, allergies 125D28, Zoloft, Ambien, Mg inj, Zn on psoriasis, 5-HTP, alpha lipoic acid, CoQ10, Acetyl Carnitine (all supps for intol sxs), 7/07 25D14, NoIRs, cover up
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Aussie Barb
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Posted: Wed Jul 11th, 2007 21:22 |
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Thank you Mom,
The Benicar Q4H may be helpful.
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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lightomni
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Posted: Tue Jul 24th, 2007 20:52 |
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Benicar 40mg q6h; 50mg Minocycline q48h
Omni's ultrasound came out clean. He has an undersized bladder and needs to void more often, but kidney is fine and they think he just had an infection that didn't show up in urine for some reason. I wouldn't be suprised to see some flank pain on & off with the MP.
Waited to get through ultrasound before upping to 75mg Mino, which will happen tonight (he takes mino at 6 pm). We did do a 3 day at 50mg, with some increase in IP, but not as much as the 3 day on 25mg.
Came home early from a friend's Gaming party this wkend with a headache, but overall is coasting just now.
Omni reports overall fatigue is lessened, and that he does experience good days which he really appreciates, and bad days that aren't any worse "than what I'm used to anyway". Had to pull teeth to get that report, more detailed info probably won't be forthcoming.
UDXmom
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Aspergers PDD-NOS ODD anxiety hypothyroid adrenal insuf obesity CFS 125D40 Ph1Jun07 ModPh2Aug07 Ph2May08 Armour thyroid gaba prn 5HTP & R-Alpha lipoic acid for intol sxs 25D8 (Oct07) NoIRs low lux home limited outings covered
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lightomni
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Posted: Thu Jul 26th, 2007 00:40 |
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Benicar q6h; began 75mg Mino 7/24/07
Omni is doing pretty well on 75mg. It has been 24 hours and we haven't seen a noticeable bump in symptoms at this point.
UDXmom
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Aspergers PDD-NOS ODD anxiety hypothyroid adrenal insuf obesity CFS 125D40 Ph1Jun07 ModPh2Aug07 Ph2May08 Armour thyroid gaba prn 5HTP & R-Alpha lipoic acid for intol sxs 25D8 (Oct07) NoIRs low lux home limited outings covered
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Aussie Barb
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Posted: Thu Jul 26th, 2007 00:49 |
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| Thank you Mom.. all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Dr Trevor Marshall
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Posted: Thu Jul 26th, 2007 00:59 |
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lightomni
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Posted: Sun Jul 29th, 2007 23:59 |
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7/26/07 Benicar 40mg q6h; 75mg Minocycline
7/27/07 Benicar 40mg q6h; 24hrs into 2nd cycle experience malaise, irritability
7/28/07 Benicar 40mg q6h;75mg mino 6pm. Flushing, lethargy
7/29/07 Benicar 40mg q6h. Back to tired but OK. Moderate photosensitivity.
By malaise and lethargy I mean lays down prone on the floor in the kitchen when his friend is over . Omni is a witty and creative enough friend that his odd behaviors are overlooked by his buds. Thank goodness.
By flushing I mean feels hot and removes shirt. Skin is cool and clammy.
UDXmom
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Aspergers PDD-NOS ODD anxiety hypothyroid adrenal insuf obesity CFS 125D40 Ph1Jun07 ModPh2Aug07 Ph2May08 Armour thyroid gaba prn 5HTP & R-Alpha lipoic acid for intol sxs 25D8 (Oct07) NoIRs low lux home limited outings covered
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Aussie Barb
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Posted: Mon Jul 30th, 2007 00:11 |
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Mom
Occasionally a member will have difficulty with increasing Minocycline to the higher doses tolerably in Phase One. In case this may be the situation with Omni, suggest sending an email for the Questionnaire to fill and return so that you have plenty of time to read and discuss the Information re which meds and doses with Staff in phase 2/3 forum before going to your Dr - so that you have your next medication ready to start as soon as you need to, with no delays.
Thank you, all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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lightomni
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Posted: Thu Aug 2nd, 2007 20:12 |
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Benicar 40mg q6h; mino 75mg q48h; good light avoidance except for computer use w/out glasses on occassion.
Thanks, Barb. The symptoms at this dose have subsided substantially. I decided not to take omni in with his dad to get the D level pulled this past Monday, both for his dad's sake and because they want to see him soon, anyway. Made an appointment for 3 weeks from now. I will get the questionnaire returned next week so we will be fully prepared by the time he sees Doc. We just won't have a recent D level yet.
I am not hearing complaints. His mood is stable, he is sleeping well, and has the energy to be with friends. But he says he feels weird and cannot elaborate. I am currently shooting for a 3-day on 75mg early next week; then bump up to 100mg.
It looks like omni will need to move to Ph2 approximately the same time as school starting. Should we push or hold back or find a maintenance level for a couple weeks? Or should I wait and ask these questions on the PH2 forum?
UDXmom
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Aspergers PDD-NOS ODD anxiety hypothyroid adrenal insuf obesity CFS 125D40 Ph1Jun07 ModPh2Aug07 Ph2May08 Armour thyroid gaba prn 5HTP & R-Alpha lipoic acid for intol sxs 25D8 (Oct07) NoIRs low lux home limited outings covered
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Aussie Barb
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Posted: Thu Aug 2nd, 2007 20:21 |
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Mom
For some, the mino can reach a maximum tolerability level, where they need to decrease and add a 2nd abx as Modified Phase One. We prefer using a lower dose of two antibiotics than pushing toward intolerable on the higher dose of one.
Thanks, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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lightomni
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Posted: Thu Aug 2nd, 2007 20:59 |
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Thanks, Barb. I will get the questionnaire filled out ASAP, then. Omni came to me a moment ago to explain he was brain fogged and found himself saying silly things and being goofy. I told him that sounds like sleepiness; how long had he slept? 10 hours.
Omni has had a droopy inattentive goofiness with side helpings of fatigue and brain fog for a long long time, but the mino seems to be exacerbating this. I remember picking him up after junior high and he would be lying spread eagle on the sidewalk almost every day because he was "too tired" to hold it together anymore. I DON'T WANT TO GO BACK THERE! If a modified Ph1 can help him I am all for it. He does suffer idiopathic adrenal insufficiency. We used to use supplements to prop him up, but without that and in greater physiological stress perhaps he simply needs to move much slower on the MP.
I think I might also drop in on him tonight to see if he is suffering a bout of sleep apnea like has happened to his father. Omni says I would not be welcome but he will just have to wake up to tell me to go away, won't he? He could take an extra benicar evenings before bed, too, if this is the case.
UDXmom
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Aspergers PDD-NOS ODD anxiety hypothyroid adrenal insuf obesity CFS 125D40 Ph1Jun07 ModPh2Aug07 Ph2May08 Armour thyroid gaba prn 5HTP & R-Alpha lipoic acid for intol sxs 25D8 (Oct07) NoIRs low lux home limited outings covered
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Aussie Barb
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Posted: Thu Aug 2nd, 2007 21:02 |
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Mom, please clarify what "move much slower on the MP" means.
Thanks, Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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lightomni
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Posted: Thu Aug 2nd, 2007 21:16 |
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Barb: I think of modified phase 1 as an extended and milder path to the same destination. Same with mod phase 2. Is this a misperception?
I am also thinking that given a choice between "increase now" and wait another 2 days or 4 days to be sure symptoms are stabilizing at this abx dose...I should choose waiting.
Partly I am afraid of burning out that adrenal gland and having a son who cannot finish his senior year and partly I am worried that his stoicism and inablity to express his symptoms will lead me to make a mistake. It is (has been) difficult to get through each school year and we have already unloaded his plate as much as we can. I need to interpret "tolerable" for him on the wimp side of the equation.
Probably you can tell this, but working with Omni stresses me out moreso than with RDMN or Mysti, because he doesn't really have the capacity to partner with me in this. Yet.
Appreciating your assistance!
UDXmom
Last edited on Thu Aug 2nd, 2007 21:18 by lightomni
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Aspergers PDD-NOS ODD anxiety hypothyroid adrenal insuf obesity CFS 125D40 Ph1Jun07 ModPh2Aug07 Ph2May08 Armour thyroid gaba prn 5HTP & R-Alpha lipoic acid for intol sxs 25D8 (Oct07) NoIRs low lux home limited outings covered
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Aussie Barb
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Posted: Thu Aug 2nd, 2007 21:24 |
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Thank you Mom
The aim is to use the antibiotic/s combination and doses to be killing the Cell Wall Deficient (CWD) bacteria at a tolerable and sustainable level of immune response.
Tolerable is the key at all times, and sometimes that will mean increasing and sometimes it will mean waiting.. You are managing well. Reporting as you have been also gives an opportunity for Staff to assess with an objective view, as is happening here..
all best, Barb...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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