CFS sufferer wondering about MS

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J R

I am a long term CFS sufferer (first became ill in 1995) but have in the last month or two wondered if I should consider asking for testing related to MS. Recently I have been experiencing arm and particularly leg weakness/heaviness and some difficulty walking when that is really bad. I also get muscle jerks, but typically only at night when lying down. I put some medical history below.

Possibly this is an over-reaction - I think that heavy legs etc. may occur with CFS. I am wary that my medical worldview is rather centered on this site. Or should I consider requesting a referall to a neurologist? I have a very helpful doctor - but mostly I see his physician's assistant (like a senior nurse for those not in the US) and she, although very helpful and knowledgeable, may need a bit of direction. Fortunately she does listen to me - so I know I am very lucky.

If anyone in this community can help point me in the right direction, I'd be grateful. The walking issues are very concening for me...

My very condensed medical history is as follows:

-diagnosed with CFS in 1995, after severe infection. Since then regular relasing remitting symptom pattern conssiting of tiredness/exhaustian, sometimes sleep distubrance, stress intolerance etc. Difficulty controlling emotions when extremely tired (e.g. find myself on the verge of tears when people are unfair/unreasonable).
-Chronic lower back pain since 2003. Improved significantly with diet changes in 2013, and improved further on CAP - currently not too bad.
-Tested for CPN 02/2016, IGM normal but IGG critical abnormal (1:256). Response to NAC (night-time fever). Started CAP as described below. Initially noticed very singificant improvements, in the last year entered more of a relapsing remitting pattern.
-Other positive tests - Lyme: western blot (39kDa Ind, 41kDa+), MTHFR test (positive for C677T and A1298C mutations), HLA genetic tests (at risk for MS/CFS/Mold toxin sensitivity)
-Typically notice worse asthma symptoms and tiredness etc. when taking a CAP pulse.

CAP I am using is as follows:
-Doxycycline Hyclate 200mg twice daily, started 03/2016
-Azithromycin 500mg once daily, started 03/2016
-Regular 5 day pulses consisting of 500mg Tinidazole twice daily for 5 days (as tolerated), started in aug 2016 - now up to around 20 pulses
- +4g Cholestrymine USP 2x daily, 1x daily ultra-binder (basically activated charcoal) - cholestrymene atarted only around Easter 2017
- lots of supplements (too tired to list today) - mix of David's recommendation (not yet vit E) and Paul Jaminet's perfect health diet supplements (http://perfecthealthdiet.com/recommended-supplements/)

J R

One further comment - I am trying to remember whether I had such bad muscle pain and weakness 20 years ago when I first got CFS and maybe this is a re-run of those symptoms - following the symptoms in reverse pattern that has been observed on this forum before. Probably this is not helped much by being 20 years older I guess Tongue Out. So maybe I am worried about something that is actually part of the healing process...

Hi, I have CFS since 1999 and almost the exact same symptoms - especially the heavy legs.

Have an EMG test on your legs to find out if the weakness is damaged nerves & get a brain MRI to look for lesions. MS without lesions it's not very common and the longer a person goes without lesions the less likely a MS diagnosis becomes.

Myself, I have nerve damage in my legs and some demyelination in my brain MRI. I could not tolerate CAP for more than 3 months = infection(best information available)

TomF - 50 yrs old, diagnosed CFS Jan.2000, CPN IGA 1:32 IGG 1:128 feb 2017

 

I think you answered your own question with that last sentence.  

I, too, had chronic fatigue for a couple of decades.  It came, went, ebbed, flowed.  It became my 'normal'.  Until one year when I stopped taking vitamins, never saw the sun (once in a year, I think), was extraordinarily stressed and overworked and.... poof, a diagnosis of 'probable MS' with corroborating brain scans. 

Stop thinking of this as CFS or MS.  What you have is an infection.  It affects different people differently and sometimes the group of symptoms is called MS and sometimes it's arthritis and sometimes it's fatigue.  But the root of it is your CPN infection. 

It's not an easy infection to kill and it fights back, so you will have inflammation and that inflammation is aggravating those old problem spots.  Be more stubborn than the bacteria and hang in there.

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

Hi there,

i also have MS, but i’ve realised the dx is the least important thing here. If the cap helped, carry on. I immediately thought of vitamins, simply because a good diet helped you! Take the CAP, but make sure you take plenty of the supplements recommended and get the vits asap!

Has your absorption been checked? I have coeliac’s and worry about absorption, which is all down to my gut, but as I react to the abx, i guess something gets through, and i have improved. Do you really have worsened asthma when pulsing or is breathing affected, as a side effect?

good luck

Jane

MS symptoms from 2001, DX RRMS in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed  chemo infusions to slow pro

Hi JR ! I also had CFS for 15 years before diagnosed with CPN. Luckily i dont have any co-infections but the CPN is enough to mean that i can only work a 3/4 week some of the time. a lot of weekends i spend sleeping to recharge for the coming week. 

the back pain etc are classic symptoms of the CPN. It is possible some co-infections or ?? are effecting your movement. The CPN scavenge & also reduce absorbtion of so many nutrients no symptom would surprise me!!

Good Luck!

Mark

J R

Dear all,

It's been a long time since I checked cpnhelp - shame on me! Thanks so much for all your comments. I really do think that I have CPN, but I've been on CAP now for pretty much two years and while I am better than I was before I am not sure how much longer my doctor will bear with me.

I may also have several coinfections, I have extremely high IGG titers for a number of viruses, but typically low IGM titers. I know this is usually indicative of a past infection, but I think that at least some of these virses persist in the body rather like CPN.

I actually have abnormally high levels of IGG antibodies for:
Cytomegalovirus
Herpes Virus 6
Parvovirus B19
Epstein Barr Virus - Viral Capsid and Nuclear
(typically the titer is well over 10x the abnormal high reference range)

and also tested positive for Lyme.

I know that for Epstein Barr virus the Stanford ME/CFS initiative used to say they saw a high IGG value as being indicative of a chronic infection (before they took down all their medical information last fall). More recently I've been thinking that it may be that some of the patients who don't get completely better with the CAP (including myself) might have a viral coinfection that is also very difficult to eradicate and that somehow also evades the immune system like CPN. Anyway, for now, I feel bad when I pulse, and definately better than when I started on CAP - so I'm going to try to continue as long as my doctor supports me. And, as you can see, my doctor is running a lot of tests for me so maybe we'll get somewhere!

J R

On the vitamins front I recently compiled a list of everything I am taking - quite a bit! For those who are interested, here it is. As you can see, I fully intend to be more stubborn than my infections!!!

-Doxycycline Hyclate 200mg twice daily, started 03/2016
-Azithromycin 500mg once daily, started 03/2016
-Regular 5 day pulses consisting of 500mg Tinidazole twice daily for 5 days (as tolerated), started in aug 2016 - currently completed approximately 20 pulses
- +4g Cholestrymine USP 2x daily, 2x daily ultra-binder (activated charcoal + additional binders) - Cholestrymene started 06/2017 - added ultra binder 09/2017, away from other meds.
-NAC 1200mg 2x daily, started 03/2016
-Low dose Naltroxen 4.5mg before bed
-Vitamin D3 2500 i.u. daily
-Vitamin K2 (as MK-7) 90mcg daily
-Vitamin C 1000mg daily
-Methyl Folate 400mcg daily
-Methyl B12 1000mcg daily
-99mg Potassium (from Potassium Chloride and Iodide) + 225mcg Iodine (from Potassium Iodide) daily
-500mg Pantothenic Acid (Vit B-5) daily
-350mg Magnesium (citrate) daily
-500mg Acetyl L-Carnatine daily
-CoQ10 100mg daily
-Orthobiotic probiotics daily (20 billion: CFU: Lactobacillus acidophilus (La-14)  Lactobacillus paracasei (Lpc-37) Bifidobacterium lactis (Bl-04) Bifidobacterium bifidum (Bb-06) Lactobacillus plantarum (Lp-115) & Lactobacillus rhamnosus (Lr-32); 2 Billion CFU: Saccharomyces boulardii)
-Nutramedix Serra Peptase Enzyme 500mg twice daily
-Zinc 50mg once weekly
-Vitamin B6 100mg once weekly
-Riboflavin (Vitamin B2) 100mg once weekly
-Thiamin (Vitamin B1) 100mg once weekly
-Chromium 200mcg once weekly
-Biotin 5000mcg once weekly
J R

In answer to Jane's questions:

Has your absorption been checked?
-No - but I do definately have gut symptoms. I could take a test perhaps.

Do you really have worsened asthmai when pulsing or is breathing affected, as a side effect?
-Trouble breathing is listed as a side effect of tini, but I wonder if that's becasue of its effect on CPN and the resulting inflammation. I guess there is no way to know.

Others who suggested some MS tests - I may ask to do that if I get any other co-ordination related symptoms. I am a lot better from when I first wrote this post back in November. My doctor knows I am very inspired by this site and she does a lot for me, but is not fully onboard with the cpnhelp paradigm, so for sure I should go easy on her on that front. Right now I feel I am doing what I can, by sticking with the CAP. Will finish a pulse tomorrow!

Hi J R,

The high titer levels for viruses may be due to stirring up of biofilm in your intestines by the NAC and antibiotics that you are taking. At least that is what my doctor told me. I have the same issues with virus titers.

Peace,

Chloe

Hi JR,

my opinium hasn’t changed. Having been messed around by the medical profession, i believe in self help, this site, and the good people here. I suspect you may have some absorption issues . You won’t get a Coeliac diagnosis unless you have weeks of gluten in your system.  I’m not always convincedi have MS, but there’s a serious issue, so, i continue with CAP, i’m bad just now, but, hopefully, time and the protocol will sort it out. So, follow your instinct and rely on it.

good luck!

Jane

MS symptoms from 2001, DX RRMS in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed  chemo infusions to slow pro

Hi JR,

my opinium hasn’t changed. Having been messed around by the medical profession, i believe in self help, this site, and the good people here. I suspect you may have some absorption issues . You won’t get a Coeliac diagnosis unless you have weeks of gluten in your system.  I’m not always convincedi have MS, but there’s a serious issue, so, i continue with CAP, i’m bad just now, but, hopefully, time and the protocol will sort it out. So, follow your instinct and rely on it.

good luck!

Jane

MS symptoms from 2001, DX RRMS in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed  chemo infusions to slow pro

Hi JR,

my opinium hasn’t changed. Having been messed around by the medical profession, i believe in self help, this site, and the good people here. I suspect you may have some absorption issues . You won’t get a Coeliac diagnosis unless you have weeks of gluten in your system.  I’m not always convincedi have MS, but there’s a serious issue, so, i continue with CAP, i’m bad just now, but, hopefully, time and the protocol will sort it out. So, follow your instinct and rely on it.

good luck!

Jane

MS symptoms from 2001, DX RRMS in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed  chemo infusions to slow pro

Hi JR,

my opinium hasn’t changed. Having been messed around by the medical profession, i believe in self help, this site, and the good people here. I suspect you may have some absorption issues . You won’t get a Coeliac diagnosis unless you have weeks of gluten in your system.  I’m not always convincedi have MS, but there’s a serious issue, so, i continue with CAP, i’m bad just now, but, hopefully, time and the protocol will sort it out. So, follow your instinct and rely on it.

good luck!

Jane

MS symptoms from 2001, DX RRMS in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed  chemo infusions to slow pro

J R

Yes, I plan to stick with the protocol as best as I can. I got a lot better over the last two years... I agree with you Jane, three times over! (That's my silly sense of humor by the way, pay it no mind!!).

Hi JR,

don’t you agree 4 times over? Sorry, tricky fingers!

Jane

MS symptoms from 2001, DX RRMS in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed  chemo infusions to slow pro

J R

And by the way, the Serra Peptase enzyme I take us supposed to help break down biofilms, for those interested. 

I am a sure biofilms play a role, at least in my case. I started on this road by trying the GAPS diet treatment protocol, and enlisting the help of a dietician who had me taking some rather extreme measures against biofilms (PM me for details if you really want to know, I won't inflict them on a general audience). In any case, they did work, and for the first time in about 10 years I was able to drop taking anti- inflammatories for the chronic inflammatory back pain that still causes me some trouble even now...

Don’t apologuse for a foggy brain!  if we can’t understand that, who can? Now,..l who am I?

MS symptoms from 2001, DX RRMS in 2008, following, a change of hospital who sent me for an MRI, precipitated by some sight loss. Took Interferons, on and off. Prescribed  chemo infusions to slow pro