Cpnhelp.org

Another bad day.  She still doesn't tolerate the glucose very well.  I gave her a very small amount.  The problem is that any reaction she gets, could simply be caused by fear raising her heart rate as she is so fearful of taking the glucose.

One thing that helps in a very good way, are the B12 sublinguals.  When she is near a crash, she pops a couple in her mouth and they just about stop her from going into the crash.

As has been suggested before it looks like she may be severely depleted in B12.  I am going to start the ball rolling with the injections - which is another fear that Paula has to get over (fear that there will be an air bubble in the sryinge) - I've told her that it will probably be like what is used by diabetics in that the needle looks almost like a pen these days.

Mark

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UK Carer of bedridden Severe CFS Feb06. Tick bites Summer04.  CPNi dx.Apr07. Borrelia dx Sept08. Samento 15 drps daily July07.  200mg Doxyi Jan08.  300mg Roxy Apr08 Stopped abxi Nov/Dec08. Building up on Supps again.

I don't know, Mark...I wasn't able to tolerate glucose, either. It made me ill.

About the B12 deficiency...it's said to cause thyroid problems, too. I found THIS about it. And, I highly recommend THIS book. Just had it dispatched to someone in the UK.

Best of luck with getting the injections going. But also be aware that symptoms might get initially worse, before they get better. This may scare Paula, too.

 

--Minai

RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. GAD-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY. LDNi 4/07. 1st Tinidazole Pulse, 8/11/07. Keflex 2/08. IV Rocephini 3/08. IV Clindamycin 5/08. USA

Thanks for the links Minai and the warning about the B12 injection.

I didn't realise that the sublinguals may not bring Paula's B12 body stores up as said here at the link you gave me:-

"Find an enteric coated 5000 mcg B-12 tablet. B-12 is destroyed by stomach acid so the enteric coating preserves it until it reaches the intestines where is can be absorbed. The sublingual types of B-12 apparently do not contribute a significant amount of B-12 to the body, but will provide a small but quicker energy boost."

I may look into getting some enteric coated B12 while I try to get the B12 injections.  The NHS is a bloody disgrace as I have already asked about getting B12 injections from her NHS GP and was told it couldn't be done as B12 wasn't licensed to be used for treating fatigue problems caused by CFSi!!!!!!

Mark

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UK Carer of bedridden Severe CFS Feb06. Tick bites Summer04.  CPNi dx.Apr07. Borrelia dx Sept08. Samento 15 drps daily July07.  200mg Doxyi Jan08.  300mg Roxy Apr08 Stopped abxi Nov/Dec08. Building up on Supps again.

Quite welcome, Mark.

You're holding up so well, all things considered. 

Yet, if one's intrinsic factor secretion in the small intestine is jeopardized, be it by infection (esp. h. pylorii, LINK ) or pernicious anemia (when one is unable to secrete it at all), not even the enteric coated tablets may work.

Part of the Cpni handbook, sublinguals are recommended:  LINK  But, even Sarah initially had injections. Probably built up her stores, the sublinguals being an adequate maintenance dose.  

Paula may not have any initial, adverse symptoms from the injections. In fact, she may even experience immediate relief. Most, with neurological symptoms (like I have) do experience the initial increase in symptoms (I did).   I don't think that injections are covered by insurance or government subsidy for CFSi, here in the states, either. Although, they are for pernicious anemia (which my bloodwork shows). But, I prefer to use the pre-filled, methylcobalamin syringes that I can inject sub-cutaneously, myself. So, I buy them myself from a compounding pharmacy that specializes in making them. And are less expensive, since they purchase cobalamin in bulk, instead of ordering small amounts for specialty orders. I hope A W can provide you with such an option. In the meantime, the Pernicious Anaemia of the UK's  forum, might be just the place to ask:  LINK 

 --Minai  

RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. GAD-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY. LDNi 4/07. 1st Tinidazole Pulse, 8/11/07. Keflex 2/08. IV Rocephini 3/08. IV Clindamycin 5/08. USA 

There is no reason why she could not take charcoal in the middle of the day except that she  needs to take it away from medication and preferably on an empty stomach, which can make it difficult to fit in.  

I think that the fear of taking glucose is probably as contributory to the racing heart as the glucose.   Is it possible, without being too devious, to introduce the small amount of glucose that you are giving her in her food...  After all we take in glucose in mostly all that we eat... Of course it has to be broken down from the natural sugars that most food contain but all the same we are talking of a very small amount especially as you have diluted it in a bottle of water.

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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006

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Mark- I would suggest you get agreement from Paula to "slip her some glucose" without her knowing it ahead of time as an experiment to test the fear of it, rather than doing it without consent. It may leave her guessing and hypervigilant, but at least it doesn't undermine the trust between you both. I'm personally not big on the "for your own good" stuff, even when it is. Maybe it comes from being a couples therapist, i.e. I wouldn't want to see that couple in therapy going over the old glucose-lie litany (substitute any other form of concealment for "glucose" such as "money" etc.).

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

I was thinking about the glucose issue, (I think Jim's suggestion is a good one, I also feel that deviousness is not a good thing) but I heard you say that Paula eats rice cakes.   I know from my own experience of the Glycemic index that rice cake are valued quite high on it.   They have a value of 82.   These calibrations are obtained by comparing foods to glucose in the following way:

Each entry is compared to glucose, if the rate that glucose converts to blood sugar equals 100. Numbers lower than 100 mean that food converts to blood sugar slower than glucose-and in terms of your mission to increase energy levels  and burn body fat.

Obviously rice cakes will not hit the blood stream as quickly as glucose will but this food will be converted quite fast to mostly glucose because of its high GI.   Even those made with brown rice have a high GI, in fact barring minor differences in manufacture or source their GIs are about the same.

'Food for thought'?

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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006

That's it, Michele, "Let her eat cakes!"

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

Thanks for the help everyone.

Paula is continuing with the 2 sachets of Chole twice per day, and slowly increasing the glucose level by a tiny bit each day with food to help with the fear.

She has a massive amount of fear at the minute - caused by the porphryia.  The psycological porphyriai symptoms are as bad as the physical ones.

We have a phone appt. with Dr AW on Thursday.  He has agreed to write us out a B12 injection perscription if we can persuade an NHS nurse to show us how to administer it.

Paula is currently on 150mg of Roxyi daily and no other abxi.  Hopefully this should not encourage resistance to cpni or lyme.  She will increase gradually when she is strong enough - hopefully in a few days.

When I speak to Dr AW on Thursday, I plan to ask him to give all the test results and info to our NHS GP, so I can attempt to persuade her to do some more tests, including diabeties, primary porphyria, PA test, liver function test + a full body MOT etc.  The NHS might as well be of some use to us if possible.

Thanks,

Mark

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UK Carer of bedridden Severe CFS Feb06. Tick bites Summer04.  CPNi dx.Apr07. Borrelia dx Sept08. Samento 15 drps daily July07.  200mg Doxyi Jan08.  300mg Roxy Apr08 Stopped abxi Nov/Dec08. Building up on Supps again.

Mark,  I am so glad that you are looking into all the conditions that you mention above with the NHS for screenings.   Sending you support for patience and persistencei in your contacts with them.   Please tell Paula that I am thinking of her.  Louise

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Louise  CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

Thanks Minai, just ordered the B12 book off Amazon.

Mark

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UK Carer of bedridden Severe CFS Feb06. Tick bites Summer04.  CPNi dx.Apr07. Borrelia dx Sept08. Samento 15 drps daily July07.  200mg Doxyi Jan08.  300mg Roxy Apr08 Stopped abxi Nov/Dec08. Building up on Supps again.