D-Ribose Bringing CPn Out Of Cryptic Form?

Paula has been starting to use d-ribose primarily to increase energy and reduce porphyrin production.

As you may know, she does have a lot of trouble tollerating new supplementsi which is why we add anything new, very slowly.

She is currently putting 1.25 grams of powder into a 75ml bottle of water and taking a few slogs.  Over the past couple of days, her tollerance level has increased, as previously she would get a large increase in fatigue when taking it.  She has attempted to take ribose a few times these last couple of weeks, but had reactions to it.

These reactions seemed to have now calmed down today - EXCEPT after she takes the Doxyi and Roxyi.  She will take a slog of ribose water about 30 minutes before the abxi, and then swallow the abxi using the same water.  Within 10 mins or so of taking the abx, she will crash, meaning greatly increased fatigue, other CFSi symptoms, and nausea.  About an hour later her fatigue will abate somewhat and then she will be back to her usual energy level.  She will then continue taking the ribose water ad hoc without as much reaction.  She hasn't crashed after the abx like this for quite a while.

So could this be die-off of new RBs (previously cryptic)?

I know it is early days.  She has only been taking the ribose for 2 days, but it is quite a co-incidence that she is starting to tollerate the ribose a bit more now and has had what could be short term die-off reactions to the abx for both of her doses today.

Maybe ribose can be used instead of pyruvate to bring cryptic CPni out of hiding?

Food for thought.

Mark

:-) 

UK Carer of bedridden Severe ME/CFS Feb06. CPNi dxi. Apr07. Samento 15 drops per day July07.  2400mg NAC 200mg Doxyi Jan08.  300mg Roxyi Apr08.

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.

some of our science minds will be by I am sure to post.  Paula's body is very busy that even the smallest change affects her energy.  Perhaps some more CPni are getting hammered!!!!

Hug for Paula

CFIDSi/ME 26yrs, FMSi, IBSi<, EBVi, CMV, Cpn, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 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

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<

-

I deal with Cpni and lyme - CFSi dxi for longer than I can remember.  When I take d-Ribose my nervous system(s) &/or adrenal/endocrine systems feel like I've had a few shots of expresso (and I'm caffeine free).   I startle more easily (which can border on seizure triggers as that's part of my mix).

I recently introduced it for about the 3rd time in a year.  Perhaps a lower dose for me.  Sigh!  I know it helps so many with some sustained endurance and cardiac support.  

While it may not "draw out the cyst forms" (if d-ribose does), I'd better stick with the adaptogen adrenal herbs such as ashwaganda, Siberian Ginseng or cordyceps.   I've been off those for a long time and really feel much more exhausted.

 --

 I still am trying to determine my plan to treat the chronic Cpn as it was just recently dx. 

Thanks Ruthless1,  I'll pass on the hug. :-) 

UK Carer of bedridden Severe ME/CFS Feb06. CPNi dxi. Apr07. Samento 15 drops per day July07.  2400mg NAC 200mg Doxyi Jan08.  300mg Roxyi Apr08.

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.

Keebler, I'm still waiting to get Paula's adrenals tested.  I see that ashwaganda and the ginseng are on the cpni supplementsi list, but have never heard of cordyceps.  When you have taken these in the past, what has been the benefit?

Mark 

UK Carer of bedridden Severe ME/CFS Feb06. CPN dxi. Apr07. Samento 15 drops per day July07.  2400mg NAC 200mg Doxyi Jan08.  300mg Roxyi Apr08.

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.

Mark, I recently had a saliva test to evaluate my adrenal cortisol level.  4 samples over the course of one day.  

My cortisol levels were elevated, most remarkably near midnight, almost off the chart.   Interesting that insomnia, mid-sleep cycle variety has been a key symptom with my CFSi

I was recommended by my nutritionally minded MD to take the following; phosphatidylserine 100mg, 1 to 3 capsules, morning, mid-afternoon and around bedtime with a focus on a higher dose at bedtime to moderate the cortisol spike that I demonstrated at midnight.

( I have been taking one 0.5mg klonopin for the past year at bedtime which controls the middle of the sleep cycle wakefulness).  I am hoping to get the cortisol level down and sleep naturally once again!

Louise, CFS. CPnPositive. BbPositive. WheldonCAP began6/24/07. NACi,Doxyi, Roxi,FullTiniPulses. Intermittent Cholestyramine,1-2packets, at bedtime,most often with pulses,and as needed, for Phorphoria & liposacaride Endotoxini Die-OffExperiences.

  • 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
  • <

 Louise -  I had a wierd cortisol curve similar to yours from similar test.   Took Seriphos http://store.agoodvitamin.com/inseadadsu10.html<

1 capsule at lunch

1 capsule at dinner

worked like a charm. 

Sweet Dreams !

(re-testing on cortisol curve showed dramatic improvement )

 

Daisy - Husband on CAP 5/07.   Roxyi, Diflucan, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxyi, Azithromycin, Flagyli, Minoi<

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. 

Thanks, Daisy,  I have two bottles from my MD, it is Physiologics brand, Neuroi PS, 60 softgels at about $40 each bottle.  After these are gone I will be looking for a substitute and your recommendation above seems to be more cost effective. Also thanks for the link to the site in general it is a very interesting distributor as I have been browsing the items and recognize quite a few of them. 

Did you continue the supplement or did the improvement hold with cessation of the supplement?  

Louise CFSi. CPnPositive. BbPositive. WheldonCAP began6/24/07. NACi,Doxyi, Roxi,FullTiniPulses. Intermittent Cholestyramine,1-2packets, at bedtime,most often with pulses,and as needed, for Phorphoria & liposacaride Endotoxini Die-OffExperiences.

  • 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
  • <

 Louise - I took it for about 30 days and my sleep pattern regulalted.  Then it resurfaced but not as trouble falling asleep but early AM awakening - 4 AM actually.  So I took the Seriphos again for another 4 to 5 weeks 1 at dinner and 1 at bedtime though to try to break the early AM awakening cycle. 

Sweet Dreams ! 

Daisy - Husband on CAPi 5/07.   Roxyi, Diflucan, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxyi, Azithromycin, Flagyli, Minoi<

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. 

Hi, Louise.... there's another post on this site somewhere discussing adrenal insufficiency (and these supplementsi were listed).

 My saliva test was similar to yours and Daisy's.  I have taken both Interplexus (brand name) Seriphos as well as their supplement called Adapt for adrenals. That particular brand is reasonably priced and of good quality (was recommended by my ND doc "back home")

My cortisol was sooooo low in the AM reading and was contributing to my not being able to get up in the mornings.  Then high at night and I couldn't sleep.   I have starting taking Cortef (2 mos ago) and it seems to be working but may take a while to get my self optimized.  Not having a thyroid also adds to my mix and problems with my HPA axis, as well as the CPNi

I still have sleep problems and take Xanex (I was on Klonopin for over 15 years (same as you .5 mg.) and it took me almost a year to wean off just that dose. My current doc wouldn't prescribe the Klonopin as I had previously been on it for so long.  Opted for the Xanex (yeah I know, still addictive but shorter "life") instead and it does help.

Hope the Seriphos works for you!

Jeanneroz 

Jeanneroz ~CPN diagnosed and started protocol  4/2007, also have  HHV6, EBVi.  CFIDSi/FM diagnosed: 6/07; Protocol:  200 mg/doxyi daily~ 250 mg AZITH M/W/F ~1st Tindi pulse 4/17/08- 1 250 mg. tab for 2 days. 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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