Help to deal with fatigue

I am in touch with a Turkish girl whose mother has msi and who, despite being very disabled is feeling some improvement. She still has unrelenting fatigue though. Since this was never one of my worst symptoms, what do people here find most helpful. I would like to pass on any information received.........Sarah

oops

M.E./CFSi 20 years, intermittent.  Wheldon Protocol - Started NACi and supplementsi Sept 2007. Doxyi and Roxy full dose by Dec '07.  First Flagyli pulse January 2008.  Changed to Tinii in December 2008.  Stopped CAPi in February 2009 at pulse 16.
An Itinerary in Light and Shadow  
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

hello, yes, i would be curious about that too.  today just felt fatigued, fatigued, fatigued, not really any other symptoms as such.   Could do nothing, nothing, nothing.   Perhaps - as a newbie - just the cumulative effect of 3 weeks antibioticsi?  Perhaps I just need to ride it out?

Blackfoot.

M.E./CFSi 20 years.  Just started NACi, September 2007, considering CAPi and Wheldon options.

M.E./CFSi 20 years, intermittent.  Wheldon Protocol - Started NACi and supplementsi Sept 2007. Doxyi and Roxy full dose by Dec '07.  First Flagyli pulse January 2008.  Changed to Tinii in December 2008.  Stopped CAPi in February 2009 at pulse 16.
Well, this lady has always had fatigue: it isn't anything to do with CAPi, but is part of her multiple sclerosis. 
  
In your case, though, I did feel more fatigue on starting abxi, which did go after a few weeks but always returned when doing a flagyli pulse, slightly less when I changed to tinidazole..............Sarah      
  
An Itinerary in Light and Shadow  
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.
Surprised   This topic must be jinxed!
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

ha ha!

 

 

M.E./CFSi 20 years.  Just started NACi, September 2007, considering CAPi and Wheldon options.

M.E./CFSi 20 years, intermittent.  Wheldon Protocol - Started NACi and supplementsi Sept 2007. Doxyi and Roxy full dose by Dec '07.  First Flagyli pulse January 2008.  Changed to Tinii in December 2008.  Stopped CAPi in February 2009 at pulse 16.

With Ella the fatigue is something that went away gradually over the months.   She still has the occasional days when she feels fatigued and her legs are very heavy but on the whole it is a thing of the past.   It took a good three months from the start of the protocol for me to notice that she seemed more able to sit and be involved in what was going on about her.

 

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.

Michele, like with Ella, mine went away gradually but this lady has been on abxi for nearly a year and it hasn't changed yet.   Hopefully eventually it will, but she is just looking for something in the short term.............Sarah      
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.
The sublingual B12 in large quantity helped me a lot at the beginning, when just one flight of stairs exhausted me for twenty minutes or more.

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

Thanks Mac, that's one thing that seemed to help me as well by the ton..............Sarah
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Well, all I know, Sarah is if it weren't for the pure sodium absorbate that I dissolve in water and drink; I feel unbearably fatiqued. So much so, that my husband and I are convinced that I suffer from CFSi in addition to MSi.

None of the Vitamin C supplementsi seemed to help me like this. Just this pure sodium absorbate, that I sip throughout the day. That's one of the good things about it...one is not getting a megadose of it, all at once, that some are worrying increase cytokinei response, or something like that.

All I know is that it definitely seems to be working for me.

--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 Restarted CAPi with NAC and Doxy 2/07. LDNi 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USA

I have found that Enada NADH has been very helpful in pulling me out of bad "going into shock" weakness states.  I usually take 2 5mg tablets.  If I could afford it, I would take more.  You can get them from Vitamin Shoppe and several other people with CFSi also rely on them. 

Hypoglycemia can also be a big culprit in bringing on fatigue, as well as food allergies/sensitivities.  It might be worthwhile for her to be tested for both.

Hope this helps. 

 

63 year old woman feels like 80!  CFS since 1998.  Severe fatigue.  Tested positive for CPN 3/07.  Severe reaction to azithro (begun slowly in 5/07) - stopped.  Working with nutrition, vitaminsi before starting more abxi.

63 year old woman feels like 80!  CFSi since 1998.  Severe fatigue and awful reverse sleep main symptoms.  No Fibro.  Tested positive for CPN 3/07.  Severe reaction to azithro (begun slowly in 5/07) - stopped. 

Keep it coming folks:  I'll send her the post en-masse!...........Sarah
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Sarah - CoQ10 400mg daily  and L-Tyrosine 1500mg upon waking, another 1500 mg at lunch.

Daisy-Caregiver- Balo's Concentric Sclerosis.  CAPi 5/10/07. Doxyi 200 mg, Minoi 100 BIDi 9-1, Azi 375QD  Roxyi 300 BIDi 11-5, Rifampin 600mg QD 10-15, Bactrim DS BID 11-3, Novantrone, Prednisone

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

Daisy on her own CAP 11/2012. 

Well, I was going to add mine, but I see that there are positive things already suggested. The best I could say was that I took everything I was supposed to and it was a very, very gradual increase of energy, which is still coming back after all these years. Your body is doing so many, many jobs that there is nothing left for "free spending" for a long while.

 

Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 48 pulses NC USA

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

Sarah, she needs to have her T3 ratio tested and overall thyroid testing too.This was a huge factor for me in the fatigue resolution. Seems that T3 is made in the liver and if the liver is infected with Cpni, it produces the wrong ratio of free T3 to reverse T3. Taking compounded T3 woke me up and gave me energy. I have now just added Iodoral (iodine supplement and have even more energy!!!!!) She may have trouble finding a knowledgeable doc to do this in her country though. However, she could start on the Iodoral and see what happens. This is the company I ordered it from. It also protects women against breast and ovarian cancer!What a bonus!!! https://vvv9.com/iodoral/?gclid=CK2t75Sr548CFRQhYQodLkGkig< Raven CAPi since 8-05 for Cpn and Mycoplasma P. for MS 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

Right thread: Dear Everyone,

These seem like really good suggestions on a topic of great importance to me. As soon as I find the energy I will go to the Vitamin Shoppe and get some of these things. I asked my husband to go, but he fell asleep too.
Nancy

PPMSi-misdiagnosed 5 years-diagnosed last spring. Minocycline 7 mos.- resulting bronchitis 5 months. Talked Hopkins neuroi. into: HRT (estriol and progesterone as neural protectant re Voskuhl,UCLA).Wheldon CAPi 3/2/07 - 200 doxyi; azith MWF. Rockville,Md.

PPMSi-misdiagnosed 2001-diagnosed 2006. Probably caught cpni in birth canal but it didn't pass BBBi until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 Stopped 12/12; resumed 12/13

Ditto for the thyroid studies. CFSi/ME seems to involve haywire thyroid for a lot of us which the CAPi doesn't shift. It could be a function of where the Cpni is infecting, or due to other co-factors, but it doesn't seem to fix itself by antibioticsi.

Ditto too for the iodine. It's given me a real boost. I found I couldn't handle the Iodoral, irritated my urinary system, but do well on Magnascent Iodine (www.magnascent.com<). It requires less dosage (only 5-6 drops in water) but may have to use it more frequently ie 3 doses a day.

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMSi- Currently: 200 Doxycycline, 500mg MWF Azithromycin, Tinii pulses.

A motto, not an aspiration: "Anything worth doing is worth overdoing."

 

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

My fatigue, though still all over the map, has improved overall.  I take all the supplementsi & a few more for good measure & I am quite sure, they have helped.  The B12 I notice, seems to make my muscles feel better, less cramping & knarliness.

Astragalus is supposed to improve energy levels.  I take it sparingly as I have a habit of careening out of control as soon as I have the small window of energy opportunity.  I have to pace myself.

It is my opinion, that as I kick some serious CPni butt, I will continue to feel better as my cells will have some oxygen & less toxins to deal with.

I have had some thought about getting my thyroid compound changed to more T3 as many have done here.  I will be running that by the doc when I see him in a few weeks.

If I can think of more I will let you know.  My book I like checking is in the basement & I am too tired to go & get it.

Laughing

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpn, (insomnia - melatonin">i, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 10-30-07 3rd pulse 2 X 250 mg 2day

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<

Graviola is supposed to help with fatigue, too, but I've not tried it myself. It's on the way from Iherb right now, based on a recommendation from a friend who swears by it for increased energy. (She originally started taking it for its reported cancer-fighting qualities after a bout with breast cancer.)

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

According to my book...

Deficiencies in B vitaminsi can often be the underlying cause of poor adrenal gland function which causes energy slumps.  Metabolism building nutrients include Vit. C, magnesium, zinc, iron, coenzyme Q10 & astragalus.

top energy foods are sprouts, all types, when seeds are sprouted their nutritional content goes up.  Grains release sugar slowly giving a steady flow of energy; they are a good source of B's which are needed to assist the spleen, the energy battery.  Oats are packed with energy nutrients & keep glucose levels  consistent to maintain concentration & alertness.  Parsley is a nutrient powerhouse; it contains high levels of B 12, more vitamin C than citrus fruits & just about all other known nutrients.  Seaweeds are the highest digestible source of al minerals as well as energy boosting B & C. 

Sunflower seeds are packed with magnesium, iron, copper, protein, B Comples EFS's & zinc; eat them for an instant energy pick up.  Grapes are high in magnesium which is involved in first stage of the process that converts energy to glucose.  Wheatgrass contains 25 times the nutrients of your choice vegetable, but has to be juiced.  Mung beans provide energy.

Royal Jelly is also an energy booster

that's all for now

Laughing

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonin">i, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 10-30-07 3rd pulse 2 X 250 mg 2day

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<

Thank you everyone:  all your recommendations will shortly be winging their way to Istanbul, which is also Guner's home town, by the way, and is full of doctors willing to do tests............Sarah      
  
An Itinerary in Light and Shadow  
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.
Sarah, wish her well for us and ask if some of those doctors would like to come practice here...

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

Mack --- I was curious about Graviola as I have extreme fatigue and was going to ask which brand you ordered..... in the interim I found this information on Graviola that it is an ATP INHIBITOR (ah, ha, of abnormal cells) and antimicrobial.... and that taking CoQ-10 may counteract it?  This is info on the RainTree Brand sold on Iherb.   (link = http://www.rain-tree.com/graviolacaps.htm<)  Sounds like it might work on CPNi bacteria as well??

Drug Interactions: None have been reported; however, based on animal studies, graviola may potentiate antihypertensive and cardiac depressant drugs.
Other Practitioner Observations:

  • Graviola has demonstrated in vitro antimicrobial properties. Chronic, long-term use of this plant might lead to some die-off of friendly bacteria in the digestive tract. Supplementing the diet with probiotics and digestive enzymes may be helpful to counteract this possible effect.
  • Graviola has demonstrated emetic properties in one animal study with pigs. Large single dosages may cause nausea or vomiting. Reduce the usage accordingly or take with a meal if nausea occurs.
  • Drinking plenty of water (at least 8 glasses a day) is helpful to reduce Herxheimer reactions and flush dead and dying cells from the body.
  • One of three documented mechanisms of action of graviola is by decreasing energy to abnormal cells (called an ATP-inhibitor). Taking supplementsi that increase cellular energy (like CoQ10) will counteract or disable this one mechanism of action of graviola (however, the other two mechanisms of action will be unaffected).

Jeanne ~CPN 4/2007; also HHV6, EBVi, CFIDS/FM- diagnosed '07; IBSi, prior kidney infectionsi, food allergies, hypothyroid (RAI for Graves in 1998), Adrenal issues (hypo); prior bronchitis/sinus problemsi. 200 mg/doxyi & 125 mg AZITH daily, supplementsi<

JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi<; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

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