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Margo
Member in Phase 3
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Posted: Thu Jan 13th, 2005 00:40 |
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We just returned from a trip (many states away) to see a doctor who treats uveitis with antibiotics. She is quite interested in the MP, and is willing to be a long-distance consultant along with our local doctor.
Our local doctors have accepted our using the MP, but are not really "tuned in" to it. I am pleased to have someone to consult who has some experience using antibiotics in these illnesses.
Margo
see also Teen on MP for more info
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Parent of teen-aged sarcoidosis/uveitis patient on the MP
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DaveW
Member
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Posted: Sun Mar 13th, 2005 14:33 |
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Margo,
That is great news. I suspect that the addition of benicar to increase the effectiveness of the antibiotics will increase her success in treating the uveitis with abx considerably.
I have had some lengthy bouts of iritis (inflammation of the iris)in my fibro experience. It baffled my opthamologist (and myself as well - until the MP came along to finally provide an explanation for "unexplained inflammation").
Do you know which antibiotics she uses? Are they a type that is capable of deep cell penetration (like those used by the MP?)
Do you know if uveitis is caused by CWD?, or by "regular" (cell walled) bacteria? Does anyone know? Is it another one of those "unexplained inflammations" (that could potentially be explained by a CWD infestation)?
I have a strong suspicion that most people have some degree of CWD bacterial infestation - which may not normally increase to clinical levels until they age (when their immune system weakens). I further suspect that many of the maladies and symptoms that we attribute to ageing are in fact symptoms caused by slowly increasing CWD infestations (such as poor sleep, fatigue, achiness and soreness, and the onset of various auto-immune diseases).
This Doctor's uveitis patients' response to benicar + abx could help reveal the validity of the above suspicion. If patients without other apparent Th1 auto-immune symptoms, have major reactions to benicar + abx, then it would suggest the suspicion is true.
However, if uveitis is caused by CWD, then they still would not be representative of the "normal healthy" (or uninfected) population (if there is such a thing).
In any case, I sure hope the Doc you found is willing to do some reading and follow up on the MP. I think that every time we get another Doc to realize the potential of the MP (and better yet - get on board to prescribing it), we are one step closer to its acceptance in regular clinical practice! (as well as rigorous reseach, which would inevitably refine it over time).
Regards,
- DaveW
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MP Aug14/04,Pre-MP D=19.6,1,25D=37 ratio 1.89 P2>12/27/04.Back to P1 fall/05.Back to P2 05/06. 21 yrs neuro-lyme not dx til 11/05. OlmesTR 40 mg/7hrs. Major: Weakness,IBS-C,pain,bad sleep,anxiety,depression,cognitive focus,memory,CMV,epilepsy & osteo
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kgg/mpg
Member
| Joined: | Tue Oct 12th, 2004 |
| Location: | Arizona USA |
| Posts: | 66 |
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Offline
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Posted: Sun Mar 13th, 2005 15:55 |
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Margo, it's so wonderful to have a successful trip to a doc, especially if it was a travel one!! And very reassuring to have another helpful doc as part of the team.
Karen
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17 yr old, home bound. VitD1,25=38, VitD25=16
DX: Lyme,CFS, HHV6, EBV, mycoplasma pneumoniae, food allergies, learning difficulties and asthma.Current meds: Singulair, Neurontin, Prilosec, Zantac, Lexapro, Testosterone cream
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Julia
Member in Phase 3
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Posted: Sun Mar 13th, 2005 16:32 |
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Margo, Dave,
I had bad uveitis for months before my eye consultant, baffled, thought of sarcoidosis and sent me for tests, which were positive. Four courses of steroid drops later, the uveitis came back worse every time the drops were finished.
Mercifully I found out about the MP. From the first few weeks of mino there was an improvement, and Phase 2 almost completed the healing. I'm left with only slight floaters in one eye and occasional ripples of light in the other - neither of which bother me at all. All the soreness has gone. My eye consultant dismissed me a couple of weeks ago, still totally sceptical and uncomprehending about antibiotic treatment, but acknowledging that my eyes were better!
So perhaps uveitis can be caused by other forms of bacteria - I don't know - but I'm convinced mine were CWD. Margo, won't the MP abx resolve your daughter's eye problems in time?
Julia
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good! Julia's story
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jdc
Guests visiting Phase 1/2/3
| Joined: | Wed Jul 21st, 2004 |
| Location: | Washington USA |
| Posts: | 155 |
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Posted: Sun Mar 13th, 2005 17:04 |
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Hi Julia,
Just wondering about your floaters and flashers and whether you or anyone else thinks that they too might respond to the eradication of cwd? I never considered my own floaters and flashers to be a symptom, because they arose as a result of athletics collisions. But I believe that do have something to do with collagen tissue breaking off. It would be nice to believe that this problem would also resolve over time.
(Your friendly little dog is now gracing some of my outgoing correspondence)
Thanks,
Jim
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PA 6/2000; started protocol 8/2004 Vit D 40/22; ACE 70;Minocin, 100 Mg.; hiatus for surgery from 3/17--4/17/06; 5/1/2006 restarted phase one, retesting of vit D 25: D
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Julia
Member in Phase 3
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Posted: Sun Mar 13th, 2005 22:20 |
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Hi Jim,
I don't know because I never took athletics seriously enough to have collisions!! My floaters and lights just came on gradually until my consultant was convinced I had retinal detachment - except he couldn't actually find it. They were so severe I was in danger of being unable to drive, and hence of losing my precious job. It was such a relief to realise they were healing with the MP.
Julia
PS You have permission to borrow my doggie (as I pinched him in the first place) - his name is Piper.
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Sarc/uveitis/hypercalcaemia/ankle osteoarthritis/eczema. MP May04. 25D Apr09:5.6. Life is good! Julia's story
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Margo
Member in Phase 3
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Posted: Tue Mar 15th, 2005 15:52 |
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Dave,
The ophthalmologist I met with has had success with an antibiotic that is part of Phase Two of the MP. At the recent Autoimmunity Research Foundation Conference, I met another doctor who has also successfully treated uveitis with antibiotics in the same family.
My daughter has actually had more success with a Phase Three antibiotic – probably because the bacteria she is dealing with are more susceptible to that other antibiotic.
Uveitis is a symptom, and has many identified causes and associations at this point. Some cases are widely accepted to be due to bacteria or viruses. Other cases are associated with “autoimmune diseases” like Crohns disease and rheumatic arthritis. I suspect that these other cases are due to CWD bacteria. There are several interesting papers that explore this. The researchers found cell-wall deficient bacteria (sometimes called mollicute-like organisms) in the vitreous fluid of patients with sardoidosis, Crohn’s disease, ulcerative colitis, juvenile rheumatoid arthritis, etc.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&DB=pubmed
Hope you find this interesting reading.
Margo
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Karen,
Thanks for the good wishes.
Margo
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Julia,
Great news about your uveitis!
Margo
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Jim,
A few people have reported that their floaters became less troublesome. I think we need to wait and see if this is a benefit that many experience.
Margo
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Parent of teen-aged sarcoidosis/uveitis patient on the MP
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