Problems With Glucose Powder - Help!

Hi,

Paula has been taking some glucose powder (dextrose) just after a meal.  The most she has been able to take is one teaspoon of the stuff, and this caused her problems.

Please remember that she is completely bedridden and can only get up a couple of times per day to visit the bathroom.  The symptoms she got a few minutes after taking the glucose was:-

Rapid pulse - her heart was racing like she was running, but of course was unable to.

Irregular heartbeat, fatigue, restlessness, breathlessness

How important for porphyriai is it to take glucose?  Should she reduce the amount she takes, until she is well enough to get out of bed?  Is there any other way she should take it? Is it worth trying D-ribose instead or would it give the same effects?

Paula is not diabetic, but she does seem to suffer from hypoglycemia.

She always has to eat complex carbohydrates and has never for many years been able to tolerate sugar, white rice, white pasta, etc.

She is doing pretty well on the other supplementsi and is still building up slowly on the dosages.

Many thanks for your help in advance.

Mark.

UK Carer of bedridden Severe ME/CFS Feb06. CPNi dxi. Apr07. Samento 15 drops per day July07.  300mg NACi 1xper day Nov07. Building up on supp. before CAPi.

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

Hi Mark, Have your tried Glucose tablets, you can cut them into small pieces and they melt more or less instantly in the mouth.   Ella used to take them BEFORE eating her meal to prevent nausea.   It also helped when she got some persistent pain.   Half a glucose tablet would make it go away in about 10 minutes.

When observing Ella at the beginning of treatment (she was also hypoglycemic) I used to get this scenario pop up in my head...

Picture a pack of starving dogs who see a person coming carrying a steak, you can imagine that they would do anything they could to get the steak.   However if the person scatters some dried food in front of them, it will take the edge of their hunger and the steak can be shared and eaten safely.   This may not be an accurate analogy, but that is how it appeared to me.   Other people have described their reactions to taking glucose as a feeling the the Cpni plaques would 'wake up' at the prospect of extra energy, so joints would ache, skin would burn, veins would throb.   Cpn is energy hungry, it steal energy from the cells which is why we get sick, not enough of our cells are making the energy we need to function.

Glucose is the main source of energy the body uses to function, it is particularly important for the brain.   It is practically instantly available as energy, all other carbohydrates will be converted to glucose before it can be used.   It is not essential to the treatment that she should take it, but it does have its uses, you just have to find the best way to use it.   I have copied the following from Wikepedia, hope this helps:

As an energy source

Glucose is a ubiquitous fuel in biology. It is used as an energy source in most organisms, from bacteria to humans. Use of glucose may be by either aerobic or anaerobic respiration (fermentation). Carbohydrates are the human body's key source of energy, through aerobic respiration, providing approximately 4 kilocalories (17 kilojoules) of food energy per gram. Breakdown of carbohydrates (e.g. starch) yields mono- and disaccharides, most of which is glucose. Through glycolysis and later in the reactions of the Citric acid cycle (TCAC), glucose is oxidized to eventually form CO2 and water, yielding energy, mostly in the form of ATP. The insulin reaction, and other mechanisms, regulate the concentration of glucose in the blood. A high fasting blood sugar level is an indication of prediabetic and diabetic conditions.

Glucose is a primary source of energy for the brain, and hence its availability influences psychological processes. When glucose is low, psychological processes requiring mental effort (e.g., self-control) are impaired.

 

Michele (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 5.5 Wheldon CAP 16th March 2006

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

Mark, if you are after energy production, you could have her try D-Ribose. It is a sugar but not metabolized the same way as glucose. Here is a recent study: http://www.medicalnewstoday.com/articles/37399.php< I ordered it from iherb.com and usually mix a scoop in with a packet of Emergen-C and a cup of water. Here's a link from a manufacturer: http://www.bioenergy.com/< Raven CAPi since 8-05 for Cpni and Mycoplasma P. for MSi and/or CFSi

Feeling 98% well-going for 100. Very low test for Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NACi,BHRT, MethyB12 FIRi Sauna. 1-18-11 begin new treatment plan with naturopath

Mark, I have been following your posts with interest.  I am wondering if Paula is in the preparatory phase at this point.  What I am asking is she taking any Abxi yet?  If not, then in my humble opinion, the glucose would likely from my personal experience of my pre-Capi tolerance of concentrated carbohydrates, (which has been true for me since at least since first pregnancy and delivery way back in 1974) she would likely have the same response. 

Now since starting on Doxyi 6/24/07 my tolerance of more refined carbohydrates has changed.  I have a bit of personal musing on the why this is true but it is true for me none the less.  I do not seem to over react to it as I used to.  And when early on in treatment I actually needed the simple sugar at time to feed my brain.  I don't know if I am being clear here but

Anyway if she has not started any part of the abxi of the protocol then I would draw back on the glucose for now until it is needed later.

I personally know all to well what it is like to step into that energy sinkhole  from the insulin stimulation resulting from simple sugars.  As I say things seem different for me now at month 6 of treatment!   Oh, dear I did not mean to bold this and I cannot erase it ether, thought I hit the return key but.

Well I still cannot get unbold so I think I will close.  Louise

CFSi/ME. CPni posititve, Bb positive. Started CAP 6/24/07 Doxy & NACi 11/3/07 Macrolide 150mgBID added to Doxy100mgBID,NAC600mgBID 11/22/07 #1 Tinii Full pulse 500mg BID 11/26/07Cholestyramine HS for porphoria/Lipo Endotoxini sxs x 1 week after pulses.

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

 Mark- glucose is not "required," it is simply one of the measures to help counter porphyriai. In fact, it is the dominant treatment for severe porphyria attacks in genetic porphyria: significant infusion of IV glucose. If it isn't helping right now, no need for it. Some of us have found it relieves the sudden hunger, irritability, wave of fatigue and so on we get from porphyrins, and I find it allows me to maintain a more consistent work load and cognitive load.

Glucose functions in three ways: by giving quick energy supply to the cells so that they don't go into ATP deficit as easily, by counterbalancing the way Cpni manipulates it's host cell to absorb more glucose than usual from the bloodstream so it can make more ATP that Cpn can steal (thus creating an increased drain on our blood sugar levels), and it shuts off the liver's production of hemei, so further porphyrins are not produced, at least by the liver. 

CAPi for Cpn 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Cytotec 100mg, Plaquenil 100mg, Magnascent Iodine 12 drps/day, T4 & T3

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Hi,

Thank you everyone for all your advice.  Yes we are in the pre-CAPi stages at the minute and Paula will be on 600mg of NACi twice per day from next week.

From your advice, we plan to put the glucose on the backburner until Paula starts the CAP properly, as she has bad effects from it at the minute.

Mark 

UK Carer of bedridden Severe ME/CFS Feb06. CPNi dxi. Apr07. Samento 15 drops per day July07.  400mg NAC 2xper day Dec07. Building up on supp. before CAP.

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

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