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healingjason
Member in Phase 3
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Posted: Wed Apr 11th, 2007 06:19 |
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Started 7 April 07 on 40 mg Q8H.
Jason is into his second week of Benicar (3 x 40mg every 8 hours). No adverse effects so far. Just maybe he is sleeping better - 3 unbroken sleeps so far when these have been as scarce as hen's teeth in recent months and years! However, this could be due to the onset of cooler nights and/or a menthol vaporiser which we have used to address his nasal congestion which he gets from time to time and too often for my liking, including during his first week on Benicar which kept him awake for several hours. Often, we have no inkling that he will be congested at night, that is to say, there is no obvious cold or flu symptoms present during the day. I'm told that the nasal passage contains many bacteria. perhaps they only become apparent while the body is resting or is horizontal?
I am trying to keep him off vitamin D foods as best I can and I have had him wearing a broad brimmed hat outside.
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Father of Jason, 11 year old autistic boy. Chronic infection evident from urinary amino acids (see bioscreenmedical.com). Benicar 40 mg QW8H from 7 Apr 07. Phase 3 from 28 June 08. Covered up, sunscreen.
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Carole
Board Staff
| Joined: | Tue Jul 20th, 2004 |
| Location: | Indiana USA |
| Posts: | 631 |
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Posted: Sat Apr 14th, 2007 01:45 |
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Hello, Jason's father!
It is great to hear that Jason is now able to rest better during the night! Uninterrupted, restful sleep is very important for everyone.
Your physician may want to consider minocycline at this time, if all seems to be stable. How long should I stay on Benicar? Why don't I feel better? When should I start minocycline?
The goal is to keep the immune response tolerable, so please stay in touch so that the moderators may keep abreast of any situation that may arise. This link about Children and the MP will be helpful as your young son progresses on the protocol.
Best wishes to all! . . . 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| ACE=68,43|
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healingjason
Member in Phase 3
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Posted: Wed May 2nd, 2007 00:37 |
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Posting on day 5 of the minocycline 25mg plus Benicar 40 mg Q8H.
Jason has now had 3 doses of mino at 25 mg on alternate days. He has been on the Benicar for a month now.
He will not swallow any tablet or small piece of tablet, a capsule or even a green pea in his dinner. He has taken the crushed half of mino tablet OK 'dissolved' in lemon cordial. At this small dose, it is not very bitter nor noticeable - I took a dose too.
On the morning of day 4, I posted Aussie Barb to infrom her that Jason was a little hyper but certainly no evidence of a headache, dizziness or tiredness and I was a bit concerned that there had been no adverse reaction at all, implying no herxing and therefore no CWD bugs.
By lunch time on day 4, my wife was called by the school. Jason had been pale and withdrawn and they asked whether he had been sick at all. By the time I spoke with them he had improved and there was no need to take him home. After school, he was very cranky and upset and wanted constant comforting. By bed time he had improved and he slept soundly.
Day 4 seems like it has involved some herxing.
I gave the 3rd mino dose this morning.
John
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Father of Jason, 11 year old autistic boy. Chronic infection evident from urinary amino acids (see bioscreenmedical.com). Benicar 40 mg QW8H from 7 Apr 07. Phase 3 from 28 June 08. Covered up, sunscreen.
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Dr Trevor Marshall
Research Team
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Posted: Wed May 2nd, 2007 01:13 |
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John,
It is known that Doxycycline cannot be given in water, but we know little about the way you are giving the minocycline. I would strongly suggest you split the dose into small gelatine capsules, so it can be taken normally by mouth. Additionally, I think there is a pill-form of minocyline in Oz (which could be manually split), but will leave it to the Aussies to tell you about that
Glad to hear that things are looking good
..Trevor..
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Dr Trevor Marshall
Research Team
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Posted: Wed May 2nd, 2007 01:24 |
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John,
I am told there are problems with your using capsules. I am nervous about the efficacy and dosage consistency of using cordials. You might look into the tablets. I don't think mino tabs taste all that bad, do they?
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PeterM
Member in Phase 2/3
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Posted: Wed May 2nd, 2007 01:31 |
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Hi John,
I'm in Melbourne too and I'm using Minomycin, which are quite small pills, which can also be split easily with a pill cutter.
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CFS(2004) orthostat. intol, photo sensit, recurr vocal fold granuloma Mar07 D25=18 D1.25=50, 20Apr07 Ph1, 13June07 Ph2, 22Aug07 Ph3, Oct07 Transition lenses (NoIRs too dark), covering up outdoors D25=10
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IngeD
Advocate
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Posted: Wed May 2nd, 2007 01:33 |
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I have the tablets. They are called Akamin and come in 50 mg. I don't know how they taste though....as I simply swallow them. They are very small and very easy to swallow.
Inge.
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Rickettsiosis per neurop chron bronch adhesions IBS pre-diabetes HTN 125D51 Ph1Jan07 25D26.4(Dec06) 25D12.8 (Jun07) 25D8.4 (Jun08) Valium NoIRs limited outings covered lo lux home Ph3
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healingjason
Member in Phase 3
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Posted: Thu May 3rd, 2007 00:52 |
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All
Thank you all for your comments on this topic.
I have contacted the researchers doing the minocycline NIMH study with ASD children in America and they advise the following mehtods are being used to give mino to the study children:
1. capsules for children that can swallow; and for those that can't
2. an oral suspension - a compounded syrup of 50 mg of mino in 5 ml of syrup; or
3. mino powder emptied from the capsule and sprinkled on food.
The children will be given mino at a dose of 1.4 mg/kg and no more than 100 mg per day. Also, vitamin B6 will be given at a dose of 0.6 mg/kg b.i.d (don't know what b.i.d means nor the role of B6).
I was told that "In Huntington's Disease mino has been found active at 100 mg/day in adults which calculates to a dose of 1.4 mg/kg assuming a 70 kg adult (Bonelli, R.M. et al. (2004). This is the dose chosen for this study and is one-half of the dose considered to be safe in the long-term treatment of acne in adolescents and young adults."
The mino will be given for 6 months with a further 3 months for responders. I can supply further information on the study to the Board if they wish.
John
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Father of Jason, 11 year old autistic boy. Chronic infection evident from urinary amino acids (see bioscreenmedical.com). Benicar 40 mg QW8H from 7 Apr 07. Phase 3 from 28 June 08. Covered up, sunscreen.
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Dr Trevor Marshall
Research Team
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Posted: Thu May 3rd, 2007 00:56 |
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John,
We know more about how antibiotics work in these diseases than the NIMH, or indeed anybody else. Do not pay any attention to the doses you are being quoted by NIMH. Pay attention to what the MP guidance documents, and the moderators, are suggesting that we have found to be effective with the other kids on the MP
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healingjason
Member in Phase 3
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Posted: Thu May 3rd, 2007 01:28 |
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Trevor
Rest assured, I was not proposing to use the doses proposed by the NIMH. I posted more for interest and to alert people to the fact that their dosing is generally double the MP dosing (being given every day) and their ceiling of 100 mg is the MP ceiling as well. This information could be used by the Board to assist in assuaging concerns that some folk may have about the safety of using mino with ASD kids or kids generally.
Mostly, I wanted to alert folk to the administration issue with ASD kids and how the NIMH are addressing this.
John
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Father of Jason, 11 year old autistic boy. Chronic infection evident from urinary amino acids (see bioscreenmedical.com). Benicar 40 mg QW8H from 7 Apr 07. Phase 3 from 28 June 08. Covered up, sunscreen.
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healingjason
Member in Phase 3
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Posted: Fri May 4th, 2007 00:06 |
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A final postscript on the administration issue.
The NIMH people have told me that their pharmacy was not able to make a STABLE liquid formulation of minocycline. For those that don't swallow capsules, the children take the powder mixed in food. They did suggest that it might be possible for a pharmacist to provide a pleasant-tasting syrup into which a dose of medicine could be poured just before ingestion.
John
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Father of Jason, 11 year old autistic boy. Chronic infection evident from urinary amino acids (see bioscreenmedical.com). Benicar 40 mg QW8H from 7 Apr 07. Phase 3 from 28 June 08. Covered up, sunscreen.
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Dr Trevor Marshall
Research Team
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Posted: Fri May 4th, 2007 00:33 |
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their pharmacy was not able to make a STABLE liquid formulation of minocycline
I guess that is the point I was trying to get across, albeit, clumsily
It is important for a caregiver to be fairly certain that a consistent dose of antibiotic is being administered
The moderators have had good success with several food-based methods, and hopefully one of those will be useful until Jason can manage the tablets and capsules.
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Grace
Advocate
| Joined: | Tue Sep 14th, 2004 |
| Location: | Australia |
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Posted: Fri May 4th, 2007 00:43 |
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John,
If Jason can have peanutbutter, try 25mg Mino cut in half again ie 2 x 1/4 tab and put it in a teaspoon of crunchy peanutbutter
Can you get panadol into him when he needs it?
Grace
Last edited on Fri May 4th, 2007 00:43 by Grace
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CFS, oct04 Ds=26/48, 4/07=7/24 MP PHI 2/05, PhII 6/05, PhIII 6/06, beni Q6H, Noirs rarely inside no nature light low watt, outside 40%10%, Hat, all covered, no gloves, paracetamol
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robyno
Member in Phase 3
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Posted: Fri May 4th, 2007 01:04 |
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John
When I was a kid I couldn't swallow tablets (they would make me choke) so my Dad used to crush the panadol or whatever and give it to me in a spoonful of ice-cream. I thought that was great and couldn't taste anything but the ice-cream. So maybe doing that with one of Jason's favourite foods would be the way to go?
Regards, Robyn
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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healingjason
Member in Phase 3
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Posted: Mon May 7th, 2007 00:54 |
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Started Jason on 50 mg of mino yesterday after 8 days on 25mg. A possible herx on day 8 as he was sniffly/runny nose and had nasal congestion at night. However, this cleared up the next day and I gave him the 50mg mino.
A feature of Jason's illness has been continual nasal congestion, especially at night which seems to affect his ability to sleep. This can arise without any apparent cold or flu symptoms during the day. When an infant, there were times that he could barely sleep because he became so stuffy that his breathing would stop and he would wake continually to take a breath. Fortunately, he is not as bad as this now.
We have put eucalyptus oil lotion under and around his chin so that the gentle 'fumes' clear his nasal passages. We now use a device which we plug into the mains ewith eucalyptus oil. I think this helps too.
John
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Father of Jason, 11 year old autistic boy. Chronic infection evident from urinary amino acids (see bioscreenmedical.com). Benicar 40 mg QW8H from 7 Apr 07. Phase 3 from 28 June 08. Covered up, sunscreen.
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IngeD
Advocate
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Posted: Mon May 7th, 2007 01:02 |
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Vick vapor rub may also help. Rubbed into chest and back. I think it lasts a bit longer than eucalyptus oil. Would have to check that it has no contraindicated ingredients though.
Inge.
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Rickettsiosis per neurop chron bronch adhesions IBS pre-diabetes HTN 125D51 Ph1Jan07 25D26.4(Dec06) 25D12.8 (Jun07) 25D8.4 (Jun08) Valium NoIRs limited outings covered lo lux home Ph3
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DNStog
Advocate
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Posted: Mon May 7th, 2007 03:53 |
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If you're looking for Minocycline in tablet form, Dynacin 50mg, is the US name for it. While Dynacin is considered a generic form of Minocycline, it is actually a lot more expensive. I paid over $60.00 for 30 tablets, out of pocket, last year at CVS because my insurance company wouldn't cover it. They are very easy to cut for smaller dosing.
The 30 tablets went a long way for me when ramping Mino so I still have quite a few tablets still available for future use. My MP doctor mentioned that his patients have found that insurance companies will usually pay for 15 at a time.
Hope this helps...Donna
Sorry, I just read your post regarding Jason's aversion to swallowing tablets. The tablets are VERY small, particularly when halved or quartered which is what you would need them for until he reaches 50mg. Perhaps you could purchase one tablet from your pharmacist and see if Jason can take in a favorite food.
Last edited on Mon May 7th, 2007 04:03 by DNStog
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Sarcoidosis/skin, joints, lungs, nerves, Raynauld's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Wellbutrin, eye vits, melatonin, Milk Thistle, Quercetin, Rx glacier, cover up, low lux h
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Grace
Advocate
| Joined: | Tue Sep 14th, 2004 |
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Posted: Mon May 7th, 2007 05:51 |
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Try a vaporizer, and don't let room get too cold during the night
Grace
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CFS, oct04 Ds=26/48, 4/07=7/24 MP PHI 2/05, PhII 6/05, PhIII 6/06, beni Q6H, Noirs rarely inside no nature light low watt, outside 40%10%, Hat, all covered, no gloves, paracetamol
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berj4
Member
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Posted: Mon May 7th, 2007 19:24 |
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Hi John,
I am curious how your son is doing on the 'mino'. Have you seen any positive changes yet? Is there an expected timeline as to when you might be able to see any positive results?
I am excited to read that there are more studies being done on treating autism using minocycline, but I really couldn't find any information on how those studies have been going. My youngest son is 8 and has been diagnosed with autism. Any additional feedback you can provide would be greatly appreciated.
berj4
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Dr Trevor Marshall
Research Team
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Posted: Mon May 7th, 2007 20:33 |
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Minocycline alone is inadequate to induce recovery from the Th1 inflammatory diseases (including ASD). You need to make the VDR do its job properly by using the agonist 'Benicar.' We have extensive data from the other diseases which clearly show that any one antibiotic is inadequate to induce recovery, and that multiple antibiotics alone don't induce recovery either.
So the current studies using antibiotics in these diseases are only nibbling at the heels of what we have already achieved. More details can be found in our peer-reviewed publications. For example, look at
"VDR Nuclear Receptor Competence is the Key to Recovery from Chronic Inflammatory and Autoimmune Disease"
http://autoimmunityresearch.org/karolinska-handout.pdf
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