Oooh yes, and, I spent some time talking to a family friend who was diagnosed with MSi [9] as a child. She has been on the modifiers for years and, surprise surprise, has the same Neuroi [6] as me and our other West Berkshire area member.  This is the guy who told me "You have MS, there's no cure, nothing we can do, come back when you get worse" and refused point blank to even look at CAPi [8].

This woman informs me that he is the best Neuro in the UK.

If this is true, God help us. 

Berkshire, UK. Diagnosed RRMSi [1] Feb 4th 2008.

NACi [2] 2400mg. All supplementsi [10]. Doxyi [3] 200mg. Zithi [4] 250mg M/W/F.
No GP/Neuro support. Self medicating with help from David Wheldoni [7].
Started CAP 20th April 2008.

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Berkshire, UK. Diagnosed RRMSi [1] Feb 4th 2008.

NACi [2] 2400mg. All supps. Doxyi [3] 200mg. Zithi [4] 250mg. Metroi [5] 400mg.
No GP/Neuroi [6] support. Self medicating with help from David Wheldoni [7].
Started CAPi [8] 20th April 2008. First pulse June 2008

But it isn't necessarily God or the neurologists who are helping us. We are certainly helping ourselves. I remember hearimg that if you want something done, hire someone; if you want it done right, do it yourself. Thanks for your wonderfully entertaining posts, and happy hunting. You will obviously be successful - you are doing it yourself.

 

Rica PPMSi [11] EDSSi [12] 6.7 at beginning - now 2. Began CAPi [8] Sept, 2004 with Rifampin 150 mg 2xd, Doxyi [3] 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli [5] total 51 pulses NC USA

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Rica PPMSi [11] EDSSi [12] 6.7 at beginning - now 2. Began CAPi [8] Sept, 2004 with Rifampin 150 mg 2xd, Doxyi [3] 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli [5] total 55 pulses LDNi [13] Rifampin 8/08 again NC USA

I see that you have experienced the Doxyi [3]+sunshine effect, you'll learn to love the shade for now. I think that this does subside in time, although taking Vit D can also ramp this up.

BTW your Neuroi [6] is not the best in the UK, mine is - "you don't get pain with MSi [9]" .

New Forest, UK. Progressive MSi dx 12/06 LDNi [13] 3/07 CAPi [8] 6/07: Wheldon version. Pulses so far #10

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Progressive MSi [9] dx2006. LDNi [13] & CAPi [8]: Wheldon version. All supps. Doxyi [3] 200mg. Zithi [4] 250mg. Metroi [5] 400mg.Pulses #10/16...I can because I think I can.

Rica, as I like to say God helps those who help themselves.

Andesine this neurologist sounds shockingly arrogant. Reminds me of the words of Dr Majid Ali who said that neurologists were basically morally bankrupt. He must have had this guy in mind.

CFSi [14]. Started CAPi [8] 03-07. Currently: Roxi 600mg + Doxyi [3] 200mg . Tinii [15] pulses 1000mg. Sauna QOD. D 8000IU. Niacini [16] 3 x 500mg. Mel 3mg.

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Hunter: Don't think - experiment

ooo garcia that is so funny!! actually what he said to me (Majid Ali) in his office is that they (nurologists) were generally mentally bankrupt but I agree with your statement too. BarbaraNAC and glutathione push for years all supplementsi [10] in protocol)IV vitaminsi [17] b1-12,C50gm,magDoxy200 10-/14/07, NAC 2400Doxy200mgAzithMWF10/29/07 roxy300,doxy200,rifampin300aziyh mwfMS flagyli [5] 1day 500x2 11/23/20074th pulse 2.8.081500mg 8days

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NACi [2] and glutathione push for years all supplementsi [10] in protocol)IV vitaminsi [17] b1-12,F10/29/07 roxy300,doxy200,rifampin300aziyh mwfMS flagyli [5] 1day 500x2 11/23/20074th pulse 2.8.081500mg 8days 7/08 finished 10th pulse on 300 rifamp bid, doxybid 7/2008

Okay, I know this is neuroi [6] bashing, but a physician told me this one.

Two physicians were hot-air ballooning (an appropriate hobby, yes?) and come down out of the clouds lost. They descend enough to ask a man on the ground "Can you tell us where we are?" He responds, "You are in a balloon." The one balloonist looks at the other and says, "Oh, he must be a neurologist!"

CAPi [8] for Cpni [18] 11/04. Dx: 25yrs CFSi [14] & FMSi [19]. Currently: 300mg BID Roxithromycin, Bactrim DS 2x/day, Tinii [15] 1000mg/day pulses; Vit D2000 units, T4 & T3

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CAPi [8] for Cpni [18] 11/04. Dx: 25yrs CFSi [14] & FMSi [19]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [15] 1000mg/day pulses; Vit D2000 units, T4 & T3

Funny, you guys. It's a shame that it kind of rings true, however.

Andesine, I occasionally get the weird feeling of water/sprinkles on me, both in the sun and under fluorescent lighting. Because it has only appeared in these two situations, I've made the assumption that it has to do with the secondary porphyriai [20]. It'll get better with treatment. It rarely happens to me now...

 

On Combined Antibiotic Protocol for Cpni [18] in Rosaceai [21] 01/06 - 07/07, On Vit D3 + NACi [2] since 07/07 and daily FIRi [22] Sauna since 08/07

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Treatment for Rosaceai [21]

• CAPi [8]:  01/06 - 07/07
• High-Dose Vit D3, NACi [2] & FIRi [22] Sauna Only:  07/07 - 11/08
• Intermittent CAP, High-Dose Vit D3:  11/08 - Present

I still get the personal shower feeling from time to time, although it is a much lighter shower now.   I don't get the tomato nose any longer, but when I did it took a couple of weeks to look normal again.

Michèle (UK) GFAi [23]: Wheldon CAPi [8] 1st May 2006. Daily Doxyi [3], Azi MWF, metroi [5] pulse. Zoo keeper for Ella, RRMSi [1], At worse EDSSi [12] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi [23]: Wheldon CAPi [8] 1st May 2006. Daily Doxyi [3], Azi MWF, metroi [5] pulse. Zoo keeper for Ella, RRMSi [1], At worse EDSSi [12] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Oh great. So I get to be called Rudolph for at least another 2 weeks.

Now this sun thing is going to be a major problem. Has anyone found a way round it? I still have a mountain of gardening to do and the neighbours already think I'm weird. If I start building walls at 2am they'll call the men in white coats.

I have 3 outdoor events to go to this summer and whilst I'd normally expect to take a brolly with me to counteract the good old British Summer (rain rain and more rain), if it's anything like it was today (boiling hot even in the shade) I'm going to burst into flames.

Berkshire, UK. Diagnosed RRMSi [1] Feb 4th 2008.

NACi [2] 2400mg. All supplementsi [10]. Doxyi [3] 200mg. Zithi [4] 250mg M/W/F.
No GP/Neuroi [6] support. Self medicating with help from David Wheldoni [7].
Started CAPi [8] 20th April 2008.

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Berkshire, UK. Diagnosed RRMSi [1] Feb 4th 2008.

NACi [2] 2400mg. All supps. Doxyi [3] 200mg. Zithi [4] 250mg. Metroi [5] 400mg.
No GP/Neuroi [6] support. Self medicating with help from David Wheldoni [7].
Started CAPi [8] 20th April 2008. First pulse June 2008

Andesine -

It's plausible and probable that a good deal of your sun reaction is the doxycycline.  It's a well documented and well known reaction.  Add that to lovely fair British peaches and cream complexion (I sign with jealousy) to the mix and well ... 

Possible solution - switch the doxy to Minocycline for the summer.  

 Upside - mino will work as well as doxy if not slightly better for MSi [9] (due to BBBi [25]) and doesn't have near the sun sensitivity reaction.  Dosing is same - 100 mg BID. 

Down side - Mino is more expensive than doxy - quiet a bit more - but same general class of agents.   Although you need only endure the extra cost for the summer months to get you through gardening and outdoor event season. 

It's either that or perhaps invest in some fun zinc oxide colors and tell the neighbors you are now into experimental art and paint and paste yourself up.

Just a suggestion...

^{Daisy - Husband on CAPi [8] 5/07.   Roxithromycin, Minocycline, Rifampin, Bactrim DS, Mepron, Prednisone, Novantrone, Doxy, Azithromycin, Flagyli [5], Diflucan}

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Daisy - Husband on CAPi [8] 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

 I still have a hunch that at least a portion of the reported sun sensitivity on doxyi [3] is actually more from skin porphyrins than from doxy itself. Why? I rarely burned as a kid. Became easily sunburned as an adult as I got sicker, and a bit moreso when I started the CAPi [8]. Now even when using doxy I'm not near as sun sensitive as I used to be. With all those folks out there not aware of hidden Cpni [18] but given doxy for some acute infection, it kind of makes me wonder.

CAP for Cpn 11/04. Dx: 25yrs CFSi [14] & FMSi [19]. Currently: 300mg BID Roxithromycin, Bactrim DS 2x/day, Tinii [15] 1000mg/day pulses; Vit D2000 units, T4 & T3

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CAPi [8] for Cpni [18] 11/04. Dx: 25yrs CFSi [14] & FMSi [19]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [15] 1000mg/day pulses; Vit D2000 units, T4 & T3

I have been going through a time of more sun sensitivity than I had in AZ a few months ago in North America here.  I agree with JimK, thinking it is somewhat to do with the critters & porphyriai [26].  I just went through another rash & hives episode on my eyelids for several weeks which included sappy excretion & itchy & swelling.  Antihistamines didn't seem to help?

CFIDSi [27]/ME 32 yrs, FMSi [19], IBSi [28], EBVi [29], CMV, Cpni [18], chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi [2] 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#10 1000 mg 3 days & 750mg 2 days, 5-17-8

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CFIDSi [27]/ME 32 yrs, FMSi [19], IBSi [28], EBVi [29], CMV, Cpni [18], chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#15 750 mg X 5 days 11-1-08

Invest in an elegant sunshade for your events and do the gardening in the rain... It will be easier to get the weeds out when it rains.

Michèle (UK) GFAi [23]: Wheldon CAPi [8] 1st May 2006. Daily Doxyi [3], Azi MWF, metroi [5] pulse. Zoo keeper for Ella, RRMSi [1], At worse EDSSi [12] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi [23]: Wheldon CAPi [8] 1st May 2006. Daily Doxyi [3], Azi MWF, metroi [5] pulse. Zoo keeper for Ella, RRMSi [1], At worse EDSSi [12] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Agreed, Michele. It's more important to modify your behaviors at the moment than to modify the meds that are helping you! Time enough for gardening, sunbathing, whatever, once you are improving.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

 Since the doxyi [3]...30 minutes in the sun and now Im a lobster. I dont know if there is a way around it except maybe sunscreen. Its frustrating because the sun and the vitamin Di [30] helps me quite a bit.. aside from the acute initial reaction and redness which is so much more intense now since the doxy, the sun makes me feel much better.

 

CPNi [18] pcri [31] and antibody positive , treating MSi [9], CFSi [14], TMJ, trigeminal neuralgia, IBS neutropenia, pus found in facial bone, Doxy 100x2, zithro 250x1 alternate days. Metroi [5] pulses each month.

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CPNi [18] pcri [31] and antibody positive , treating MSi [9], CFSi [14], TMJ, trigeminal neuralgia, IBSi [28] neutropenia, pus found in facial bone, Doxyi [3] 100x2,Doxy 200x2 zithro 250x1 alternate days. Metroi [5] pulses each month.

Also a word of caution, last summer I got a red cooked lobster burn on my face, nose, and forarms and hands while driving for 2 hours in the July Sun, inside a car with tinted window glass! For me it took 3 - 4 weeks to fully clear.

I am hoping that this summer I will be less sensitive. Certainly I have already started to be more careful.   It does help to be aware though, so I have several sunhats, longsleeve cotton over shirts and cotton goves ready as well as sunscreens.  People may think I have a germ phobia with those white cotton gloves.  Come to think of it maybe I do ! 

Louise USA.CFSi [14].CPn Positive.BbPositive.WheldonCAP6/24/07.NACi [2],Doxyi [3],Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxinsi [32]. 

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Louise  CFSi [14], CPN+/Bb+,Wheldon CAPi [8] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [26] & Endotoxinsi [32] PRN, Doxyi [3] 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support