Ow ow ow ow and more ow!

Submitted by Andesine on Sun, 2008-06-08 04:46

Oooops, missed a week, slapped wrist.

End of week 7.

Week 6 shot past in a blur as I was so busy. I guess that says a lot as I was actually able to be busy and not constantly get bugged by the MSy shakes.

Week 7 I've been just as busy and week 8 gets worse as I'm busier, however, I've had a couple of reminders that I'm not 100% over the last few days.

I was back to the left side weakness and not concentrating problem. Sat at the computer, engrossed in something and without giving it a second thought, picked up a hot cup of coffee with my left hand and promptly let it go straight into my lap. Fifteen minutes in the bath showering my nether regions with cold water to stop the burning will hopefully remind me to pay more attention in future. That and the permanently sticky patch on the carpet that I have to peel my feet off. Why can you never get sugary drinks out of carpets?

My other problem has been down to the weather. Sun and my skin just do not seem to like each other. I've been wearing long sleeves and high necks but found my nose and the side of my forehead not covered by my fringe, have gone bright red.

Yesterday we went to my Father-in-law's birthday bash. Garden party. I sat in the shade and wore a hat and sun glasses. About 2 hours in I could feel spits of rain on my hands and arms. Nobody else could. Looking up at the sky, not a cloud in sight so I got convinced someone was spraying me with water for a laugh. Despite spending some considerable time watching what everyone was up to from behind dark glasses, nobody seemed to be doing anything untoward with a spray bottle.

Now, I know this makes me sound totally paranoid but if you knew my OH's family you'd understand the suspicion.

Having arrived home, I took a walk over to the shop and all the way felt like fine rain again. By this time I was realising it was me and that it must have been my nerve endings firing. Then I got the burning feet bit but in my hands! It felt just like I had reached into a hot oven without gloves on.

About an hour after being indoors a heat rash appeared and boy did it sting. No amount of after sun was helping. It finally eased off about 3am and this morning it's just slightly sensitive and very red.

I had intended doing some gardening today but short of scaring the neighbours witless by appearing covered from head to foot, including dark glasses, hat and gloves, I can't think of a way to avoid the reaction again. My OH has a Gorilla costume that might be an option. I could start a local rumour that the mad cat and hedgehog rescue lady has now completely lost it and appears to be starting a zoo. Cool

 

 

Oooh yes, and, I spent some time talking to a family friend who was diagnosed with MS as a child. She has been on the modifiers for years and, surprise surprise, has the same Neuro 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 CAP.

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

If this is true, God help us. 

Berkshire, UK. Diagnosed RRMS Feb 4th 2008.

NAC 2400mg. All supplements. Doxy 200mg. Zith 250mg M/W/F.
No GP/Neuro support. Self medicating with help from David Wheldon.
Started CAP 20th April 2008.

Berkshire, UK. Diagnosed RRMS Feb 4th 2008.

NAC 2400mg. All supps. Doxy 200mg. Zith 250mg. Metro 400mg.
No GP/Neuro support. Self medicating with help from David Wheldon.
Started CAP 20th April

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 PPMS EDSS 6.7 at beginning - now 2. Began CAP Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyl total 51 pulses NC USA

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

I see that you have experienced the Doxy+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 Neuro is not the best in the UK, mine is - "you don't get pain with MS" .Image removed.

New Forest, UK. Progressive MSi dx 12/06 LDN 3/07 CAP 6/07: Wheldon version. Pulses so far #10

speedbird

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.

CFS. Started CAP 03-07. Currently: Roxi 600mg + Doxy 200mg . Tini pulses 1000mg. Sauna QOD. D 8000IU. Niacin 3 x 500mg. Mel 3mg.

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 supplements in protocol)IV vitamins b1-12,C50gm,magDoxy200 10-/14/07, NAC 2400Doxy200mgAzithMWF10/29/07 roxy300,doxy200,rifampin300aziyh mwfMS flagyl 1day 500x2 11/23/20074th pulse 2.8.081500mg 8days

NAC and glutathione push for years all supplements in protocol)IV vitamins b1-12,F10/29/07 roxy300,doxy200,rifampin300aziyh mwfMS flagyl 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 neuro 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!"

CAP for Cpn 11/04. Dx: 25yrs CFS & FMS. Currently: 300mg BID Roxithromycin, Bactrim DS 2x/day, Tini 1000mg/day pulses; Vit D2000 units, T4 & T3

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Red

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 porphyria. It'll get better with treatment. It rarely happens to me now...

 

On Combined Antibiotic Protocol for Cpn in Rosacea 01/06 - 07/07, On Vit D3 + NAC since 07/07 and daily FIR Sauna since 08/07

Treatment for Rosacea

  • CAP:  01/06-07/07
  • High-Dose Vit D3, NAC:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

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) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse. Zoo keeper for Ella, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

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 RRMS Feb 4th 2008.

NAC 2400mg. All supplements. Doxy 200mg. Zith 250mg M/W/F.
No GP/Neuro support. Self medicating with help from David Wheldon.
Started CAP 20th April 2008.

Berkshire, UK. Diagnosed RRMS Feb 4th 2008.

NAC 2400mg. All supps. Doxy 200mg. Zith 250mg. Metro 400mg.
No GP/Neuro support. Self medicating with help from David Wheldon.
Started CAP 20th April

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 MS (due to BBB) 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 CAP 5/07.   Roxithromycin, Minocycline, Rifampin, Bactrim DS, Mepron, Prednisone, Novantrone, Doxy, Azithromycin, Flagyl, Diflucan

Daisy - Husband on CAP 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MS drugs killed him.

Daisy on her own CAP 11/2012. 

 I still have a hunch that at least a portion of the reported sun sensitivity on doxy 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 CAP. 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 Cpn but given doxy for some acute infection, it kind of makes me wonder.

CAP for Cpn 11/04. Dx: 25yrs CFS & FMS. Currently: 300mg BID Roxithromycin, Bactrim DS 2x/day, Tini 1000mg/day pulses; Vit D2000 units, T4 & T3

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

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 & porphyria.  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?

CFIDS/ME 32 yrs, FMS, IBS, EBV, CMV, Cpn, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 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

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

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) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse. Zoo keeper for Ella, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

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

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 doxy...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 D 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.

 

CPN pcr and antibody positive , treating MS, CFS, TMJ, trigeminal neuralgia, IBS neutropenia, pus found in facial bone, Doxy 100x2, zithro 250x1 alternate days. Metro pulses each month.

 

 

 

 

 

&nbs

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 Image removed.

Louise USA.CFS.CPn Positive.BbPositive.WheldonCAP6/24/07.NAC,Doxy,Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxins. 

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support