Fatigue And "Women's Things"

Her "hockling" continues - some days not so much and some days quite a bit, but I feel and hope that in general it has slowed these past couple of weeks - here's hoping!

She continues to build up on the D-ribose - still 3/4 teaspoon of the stuff in a 75cl bottle of water.

She does seem to "crash" a lot more lately. She would only crash when not pacing enough, but she is pacing as well as she used to, but still crashing - meaning that the time that I see her and can talk to her these past couple of weeks has reduced a lot - I hope that this is die-off, as there doesn't seem to be any other reason why her fatigue would increase so much lately.

Another increased symptom that she used to get a lot before the CAPi [2], but has come back again in the past couple of weeks, is a burning sensation in her skin, all over her body, and pins & needles, including her tongue. In fact this tongue pain is an early warning sign of a crash to come.

In the last year, in the middle of the time when her period wasn't due, she may get a bit of brownish colour blood, just like the colour you get at the end of a period.

Yesterday, 10 days before she was due a period, she got a bit of breast tenderness, and got the impression that she may have an early period. Today, she had a bit of red period like blood which then changed to the brown. She didn't have any period pain today like she normally does with a normal period. This blood then stopped.

I want to know if the other symptoms that Paula is getting at the minute, especially the increased fatigue, pins & needles, and skin burning could be RB die-off?

UK Carer of bedridden Severe ME/CFS Feb06. Bitten by ticks Summer 04. CPNi [3]i [3] dx. Apr07. Borrelia dx Sept08. ~~Samento 15 drops per day July07. 2400mg~~ 1200mg NAC ~~200mg. Doxyi [4]i [4] Jan08.~~ 75mg Roxyi [1] Nov 26th 08

:-) UK Carer of bedridden [5]

Submitted by Mark Hall on Tue, 2008-06-10 18:16.

:-)

UK Carer of bedridden Severe ME/CFS Feb06. CPNi [3] dx. Apr07. Samento 15 drops per day July07. 2400mg NAC 200mg Doxyi [4] Jan08. 300mg Roxyi [1] Apr08.

___________________________________________________________

UK Carer of bedridden Severe ME/CFS Feb06. Bitten by ticks Summer 04. CPNi [3] dx. Apr07. Borrelia dx Sept08. ~~Samento 15 drops per day July07. 2400mg~~ 1200mg NAC ~~200mg. Doxyi [4] Jan08.~~ 75mg Roxyi [1] Nov 26th 08

Mark Regarding the "woman [6]

Submitted by loriyas on Tue, 2008-06-10 19:37.

Mark

Regarding the "woman thing"-how old is Paula? It could be the natural course of things (as in peri-menopause) . Just a thought

Lori

Started Vanderbilt protocoli [7] 1/9/08 Rifampin twice a day, azithromycin MWF, flagyli [8] 7 days/month, b12 injection monthly NACi [9] daily, DHA, calcium pyruvate, prilosec, low dose naltrexone 4.5 mg daily, Copaxone

___________________________________________________________

Started Vanderbilt protocoli [7] 1/9/08 Rifampin twice a day, azithromycin MWF, Tindamax for 7 days out of a month at 250 mg three times a day, b12 injection monthly NACi [9] daily, DHA, calcium pyruvate, prilosec, low dose naltrexone 4.5 mg

Hi Lori, she is 42. UK Carer [10]

Submitted by Mark Hall on Tue, 2008-06-10 19:54.

Hi Lori, she is 42.

UK Carer of bedridden Severe ME/CFS Feb06. CPNi [3] dx. Apr07. Samento 15 drops per day July07. 2400mg NAC 200mg Doxyi [4] Jan08. 300mg Roxyi [1] Apr08.

___________________________________________________________

hmmm, it could be the nature

Submitted by ruthless1 on Tue, 2008-06-10 23:34.

hmmm, it could be the nature of things, but? is Paula taking the Evening Primrose? Some have reported the spotting & felt it was due to that. I am 10 years older than Paula & am on the short end of the estrogen supply.

Perhaps Paula should get her hormone level checked; perhaps some of the fatigue could be from low levels of some hormones?

Hugs for Paula! & you are the best Mark.

CFIDSi [11]/ME 32 yrs, FMSi [12], ~~IBSi [13]~~, EBVi [14], CMV, Cpni [3], chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi [9] 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 [11]/ME 32 yrs, FMSi [12], ~~IBSi [13]~~, EBVi [14], CMV, Cpni [3], chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#15 750 mg X 5 days 11-1-08

I was glad to have a

Submitted by Keebler on Wed, 2008-06-11 02:21.

I was glad to have a naturopathic physician sort out some very severe menstrual problems for me. The darker blood may indicate a certain stagnation. Acupuncture and herbs such as Dong Quai (Tang Kuai ?), angelica, etc. really made a huge difference. Amazingly, Liver support and adrenal support both really helped.

Magnesium glycinate helped much to lower pain and increase some energy.

I wonder if she would be able to consult with naturopathic physician or acupuncturist who specializes in women's health? Otherwise, Tori Hudson, ND is a well-respected author on this subject.

http://tinyurl.com/48cuux [15] (though Amazon.com)

Women's Encyclopedia of Natural Medicine [16]by Tori Hudson, N.D. (Paperback - Sep 20, 2007) about $17.00 - you can search inside the book at Amazon - and read four customer reviews.

Hi Mark, I would [17]

Submitted by willbewell on Wed, 2008-06-11 02:15.

Hi Mark,

I would strongly advise getting a full hormone panel run, not just the estrogen, Lh and FSH tests - perhaps a 24 hr urine test.

I am 45 and in a similar situation. My hormones test results don't make any sense even GP says 'it is a bit of a mystery'. My FSH is indicative of early menopause, but my estrogen is that of a well post menopausal woman - i.e. barely or not even detectablel and therefore I should not be having periods at all and I have never had any of the signs of perimenopause or menopause. Just regular old periods with the once or twice a yearl 2 a month.

ME and lyme (and why not cpni [3]) can and does mess up your hormones - there is the HPA axis dysfunction and adrenal fatigue.. I am not convinced I am in natural menopause, rather I think that my hormones are so messed up due to these illnesses that this is the knock on effect. Looking back at tests a year ago, I have barely detectable levels of estrogen then with perfectly normal LH and FSH. SOrry, I didn't mean to go on about my issues, but thought this might explain where I am coming from.

My gut feeling is that my hormones are completely messed up, having an effect on my body (more fatigue, dry eyes, memory, lately odd periods etc) and adding to the symptoms of these illnesses. I've done much reading on hormones and a full hormone panel I think is a must for all of us women - especially someone as ill as Paula.

I've read many of your posts and am so impressed with your dedication and constant searching for help for Paula. It is so hard having these illnesses, but no picnic either for our carers and families who love us.

2004 ME/CFSi [18] after undiag/untreated pneumonia. 2007 lyme/babesia. April 08 finally a diagnosis CPN, lyme, babesia, c. pulmoni.

Rifampicin 150mg day, Azith 250mg M/W/F, NACi [9] 1200mg day, Metronidazolei [8] 400mg 2 x day every 4th week.

___________________________________________________________

2004 ME/CFSi [18] after undiag/untreated pneumonia. 2007 lyme/babesia. April 08 finally a diagnosis CPN, lyme, babesia, c. pulmoni.

Rifampicin 150mg day, Azith 250mg M/W/F, NACi [9] 1200mg day, Metronidazolei [8] 400mg 2 x day every 4th week.

Cpni is known to be

Submitted by Michele on Wed, 2008-06-11 05:46.

Cpni [3] is known to be implicated in women's problems. Ella has less period pain now, two years into the protocol than she had before she started, but they can still be irregular at times. By my way of thinking we are stirring up Cpn when taking the antibiotics and it is bound to disrupt things.

Paula is now on the two bacteriostatics and can take as long as necessary before adding the metronidazolei [8]. These two are not the major killers of Cpn but they do kill some and therefore her body will have to cope with the die off and may cause her symptoms. It may take as long as a year for her to feel comfortable enough to add the third ABXi [19]. As long as she can cope with what she is taking now, then her condition will not be getting worse in spite of the apparent new symtoms.

Michèle (UK) GFAi [20]: Wheldon CAPi [2] 1st May 2006. Daily Doxyi [4], Azi MWF, metro pulse. Zoo keeper for Ella, RRMSi [21], At worse EDSSi [22] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

___________________________________________________________

Michèle (UK) GFAi [20]: Wheldon CAPi [2] 1st May 2006. Daily Doxyi [4], Azi MWF, metroi [8] pulse. Zoo keeper for Ella, RRMSi [21], At worse EDSSi [22] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Thanks willbewell. We have

Submitted by Mark Hall on Wed, 2008-06-11 16:31.

Thanks willbewell. We have an appointment with Dr AW in a few weeks, and this is one of the issues I want to bring up with him. We will also speak to our NHS GP in a day or to to see if it could be a sign of an early menopause.

UK Carer of bedridden Severe ME/CFS Feb06. CPNi [3] dx. Apr07. Samento 15 drops per day July07. 2400mg NAC 200mg Doxyi [4] Jan08. 300mg Roxyi [1] Apr08.

___________________________________________________________

Thanks Ruthless1. We will

Submitted by Mark Hall on Wed, 2008-06-11 16:33.

Thanks Ruthless1. We will have a word with our doc. Paula has been taking EPO for the last 6 months, so it could be that as you say.

UK Carer of bedridden Severe ME/CFS Feb06. CPNi [3] dx. Apr07. Samento 15 drops per day July07. 2400mg NAC 200mg Doxyi [4] Jan08. 300mg Roxyi [1] Apr08.

___________________________________________________________

Thanks Keebler, I'll have a

Submitted by Mark Hall on Wed, 2008-06-11 16:34.

Thanks Keebler, I'll have a look at that link.

UK Carer of bedridden Severe ME/CFS Feb06. CPNi [3] dx. Apr07. Samento 15 drops per day July07. 2400mg NAC 200mg Doxyi [4] Jan08. 300mg Roxyi [1] Apr08.

___________________________________________________________

Thanks Michelle. Paula is

Submitted by Mark Hall on Wed, 2008-06-11 16:38.

Thanks Michelle. Paula is in no condition, or hurry at the minute to take Flagyl or Tinii [23]. As you say, we will wait until her reactions to the bacteriostatics calm down first. - I hope it won't take a year though.

UK Carer of bedridden Severe ME/CFS Feb06. CPNi [3] dx. Apr07. Samento 15 drops per day July07. 2400mg NAC 200mg Doxyi [4] Jan08. 300mg Roxyi [1] Apr08.

___________________________________________________________

Hi Mark, I just wanted to [24]

Submitted by Finch on Wed, 2008-06-11 18:10.

Hi Mark,

I just wanted to let you know that the burning skin type feeling has been part of my ME/CFSi [18] symptomology. Also, I've been feeling much more fatigued lately, which I feel I can attribute to the die-off. Although I don't get the pins and needles feelings, I do get the burning type sensation all over. My tongue and my eyes burn, too. The burning sensation feels a little bit like a sunburn. I especially notice it on my scalp. I would think if this has been one of Paula's ME/CFS symptoms in the past, the die-off could be causing it to flare up now.

Finch - Western PA USA

ME/CFS since 1991 - CPni [3] dx 6/07 - began Cipro 1500mg per day - added NACi [9] 7/07 - switched to Doxyi [4] 9/10/07 - 100mg 2x per day 11/3/07 - Azith 250mg M-W-F 10/10/07 - NAC 2400mg per day 1/08 - Flagyl 500mg 3/28/08 gradually inc

___________________________________________________________

Finch - Western PA USA

ME/CFSi [18] since 1991 - CPni [3] dx 6/07 - began Cipro 1500mg per day - added NACi [9] 7/07 - switched to Doxyi [4] 9/10/07 - 100mg 2x per day 11/3/07 - Azith 250mg M-W-F 10/10/07 - NAC 2400mg per day 1/08 - Flagyl 500mg 3/28/08 gradually inc

A lot of us had

Submitted by MacKintosh on Thu, 2008-06-12 18:03.

A lot of us had uterine/reproductive issues before starting abxi [19]. My guess is this is simply an indicator of the abxi [25] attacking cpni [3] in the reproductive system and, yes, the byproduct is going to be 'up and down' for awhile. Of course it's hormonal, but not as a cause of the problem - it's a reaction to treatment. The meds are addressing the infection and the uterus is responding. Left alone (if tolerable for her), the problems will likely resolve themselves with continued treatment.

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

Well that answers a few

Submitted by Andesine on Sat, 2008-06-14 10:35.

Well that answers a few things. I started menopause at 38. My GP said I had NO oestrogen whatsoever, or at least, the tests couldn't find any and yet my periods were heavy and very erratic.

I went on HRT which helped no end but the Doc took me off them after 5 years as the bleeds were so heavy I was becoming anaemic.

The hot flushes continue to this day although I'm now beginning to think that's the MSi [26] not menopause as they seem to be less since I've been on CAPi [2].

Berkshire, UK. Diagnosed RRMSi [21] Feb 4th 2008.

NACi [9] 2400mg. All supplementsi [27]. Doxyi [4] 200mg. Zithi [28] 250mg M/W/F.
No GP/Neuroi [29] support. Self medicating with help from David Wheldoni [30].
Started CAP 20th April 2008.

___________________________________________________________

Berkshire, UK. Diagnosed RRMSi [21] Feb 4th 2008.

NACi [9] 2400mg. All supps. Doxyi [4] 200mg. Zithi [28] 250mg. Metroi [8] 400mg.
No GP/Neuroi [29] support. Self medicating with help from David Wheldoni [30].
Started CAPi [2] 20th April 2008. First pulse June 2008

Thanks Finch, it is a relief

Submitted by Mark Hall on Sun, 2008-06-15 08:03.

Thanks Finch, it is a relief to hear of other people having the same symptoms, as this is such a scary illness at times. Not that I'm glad that you have the same symptoms if you get what I mean.

UK Carer of bedridden Severe ME/CFS Feb06. CPNi [3] dx. Apr07. Samento 15 drops per day July07. 2400mg NAC 200mg Doxyi [4] Jan08. 300mg Roxyi [1] Apr08.

___________________________________________________________

Thanks Mac. "Of course

Submitted by Mark Hall on Sun, 2008-06-15 08:05.

Thanks Mac. "Of course it's hormonal, but not as a cause of the problem - it's a reaction to treatment." - that's what I have told her.

Mark

UK Carer of bedridden Severe ME/CFS Feb06. CPNi [3] dx. Apr07. Samento 15 drops per day July07. 2400mg NAC 200mg Doxyi [4] Jan08. 300mg Roxyi [1] Apr08.

___________________________________________________________