Not Boom and Bust - an Epiphany.

[Valentijn]

I interpret high PGE2 as a sign that fish oil is probably a good idea .. .quality fish oil of course.

Without the fish oil I have a chronic headache. I wonder if it that means it's the elevated PGE2 causing the headache then.

 

[OverTheHills]

Ooh I wish I understood more about this. I took a lot of borage oil (more powerful than evening primrose oil) for years to help with my severe endometriosis pain (and it did help a lot).

Given the high co-morbidity of endo and ME I am wondering if this points toward an underlying defect of eicanisoid (sp) metabolism which predisposes to both.

I wonder @alex3619 whether I was delaying the development of ME or making it more likely.

Because I lived in England then I couldn't get treatment for the endometriosis. Another 'pull yourself together woman' situation. I could get treatment as soon as I moved to NZ. In fact the doctors obviously thought it was strange that I had put up with so much pain and disruption to my life for decades (lying on the bathroom floor bleeding and vomiting anyone?... possibly too much information )

OTH

 

[alex3619]

I suspect PGE2 causes migraine type headache due to vasodilation. I am not sure though.

Borage oil may or may not be related to increased or decreased risk of ME. It can be argued both ways. We simply don't know enough.

 

[justy]

Ooh I wish I understood more about this. I took a lot of borage oil (more powerful than evening primrose oil) for years to help with my severe endometriosis pain (and it did help a lot).

Given the high co-morbidity of endo and ME I am wondering if this points toward an underlying defect of eicanisoid (sp) metabolism which predisposes to both.

I wonder @alex3619 whether I was delaying the development of ME or making it more likely.

Because I lived in England then I couldn't get treatment for the endometriosis. Another 'pull yourself together woman' situation. I could get treatment as soon as I moved to NZ. In fact the doctors obviously thought it was strange that I had put up with so much pain and disruption to my life for decades (lying on the bathroom floor bleeding and vomiting anyone?... possibly too much information )

OTH

I also began my journey into ill health with endometriosis at about age 18 plus. I was advised to have another baby after my 1 st child at 21, this didn't fix it, but did give me a remission of endo while I was pregnant and breastfeeding. It eventually came back with a vengeance and I had baby number 3. It eventually went away after my 4th child was born in my mid 30's, then I had a severe M.E relapse - pain not so bad now, but bleeding still pretty severe. What treatment where you offered in NZ?

I was offered hormone treatment at age 22, but didn't fancy the side effects (facial hair growth, deepening of voice etc)

 

[Victoria 85]

@justy, I was like this too in the first ten years or so of my illness. I seemed to catch every infection and was always sick with something or just feeling recovered for a few days, only to be slammed with the next infection. Compared to others around me, these infections would always develop into something severe and long-lasting. I would be flattened for at least two weeks with any sore throat. Then, mysteriously, my illness changed about 7-8 years ago. I catch colds at a normal rate (~2x a year or so) but I never develop a fever, ever, so any infection I do get lingers for a long time and affects me more severely than family members.

I also have the type of ME with antinuclear antibodies as described by Prof. Edwards.

Hi I am new at this site. I never get fevers either. I always found this odd. I will feel feverish but it does not register. Are you similar?
I also used to get constant sinus infections. Does not happen much anymore. Just a constant state of congestion and dry eyes, gunk.

 

[Sidereal]

Hi I am new at this site. I never get fevers either. I always found this odd. I will feel feverish but it does not register. Are you similar?

Hi, welcome. Yes, many of us with this disease have that problem. Often I will feel feverish but actually have subnormal body temperature when I measure it.

 

[Victoria 85]

Hi, welcome. Yes, many of us with this disease have that problem. Often I will feel feverish but actually have subnormal body temperature when I measure it.

Thanks for responding. I never saw this as part of the medical descriptions. You are the first I saw mention this oddity.

I am still trying to accept the CFS label. I know I am sick and I know I was diagnosed but in the back of my mind I think, " what if it is really something else that is solid". Like the doctors missed a different condition that has a known cause or cure...

I have not told the doctors that I do not register a fever because there is so much to tell them and it sounds weird. I have had bad experiences throughout this ordeal with doctors .... Like so many.

 

[Gingergrrl]

Hi, welcome. Yes, many of us with this disease have that problem. Often I will feel feverish but actually have subnormal body temperature when I measure it.

I have the exact same issue, I suspect both due to CFS and thyroid. I can feel like I have a fever but my temp is only 96 or 97 degrees. I think it is fairly common with our population- still not sure why. I literally never get fevers.

 

[Victoria 85]

I have the exact same issue, I suspect both due to CFS and thyroid. I can feel like I have a fever but my temp is only 96 or 97 degrees. I think it is fairly common with our population- still not sure why. I literally never get fevers.

Yes, all the signs of a fever. Hot. Cold, achy. But no registered temp! It makes no sense.

 

[alex3619]

Yes, all the signs of a fever. Hot. Cold, achy. But no registered temp! It makes no sense.

Hot and cold have a neurological component. Its also about what are called set points. If you run cold due to thyroid or other issues, then a normal temp will feel like a fever. Achy is due to cytokines usually. Again, not about heat.

In may of us the nerves feeling hot and cold are damaged, leading to extreme heat and cold sensations. With me this started as burning feet syndrome, but now has morphed into burning body syndrome.

 

[Martial]

Some of those symptoms sound a lot like CVID Justy. Though usually that is something that happens from birth, as in during your teens and early adulthood you would have gotten way more sick then normal. I don't know how long you have been dealing with illness personally though. Interesting enough a lot of infections can cause a secondary form of Immunol deficiency from the body being over whelmed fighting something off for so long. IVIG is usually very helpful in these cases.

 

[Sidereal]

Thanks for responding. I never saw this as part of the medical descriptions. You are the first I saw mention this oddity.

I am still trying to accept the CFS label. I know I am sick and I know I was diagnosed but in the back of my mind I think, " what if it is really something else that is solid". Like the doctors missed a different condition that has a known cause or cure...

I have not told the doctors that I do not register a fever because there is so much to tell them and it sounds weird. I have had bad experiences throughout this ordeal with doctors .... Like so many.

Sorry to hear about your ordeal. Most of us here have had similar interactions with the medical profession. You will learn a lot more here on Phoenix Rising than from any doctor. Most descriptions of CFS from mainstream medical sources like the CDC are not very relevant to our experience. They are mostly written by people who have no clinical experience of this disease and are generally formulated in a way to minimise the severity of the disease, trivialise its symptoms in a way to promote psychological treatments, and allow plenty of room to deny disability payments to as many people as possible.

For instance, there was a thread on here recently about the egregious CFS article on the Uptodate website which is popular among physicians in the US. Turns out the guy who wrote it had been asked to do so despite basically never having treated a CFS patient.

Have you checked out the International Consensus Criteria (you'll see it referred to as ICC around here a lot) for myalgic encephalomyelitis (old British name for this disease before the CFS nonsense)? These were actually compiled by a group of physicians who are true experts on this disease. Among other symptoms it lists:

3. Loss of thermostatic stability:e.g. subnormal body temperature, marked diurnal fluctuations; sweating episodes, recurrent feelings of feverishness with or without low grade fever, cold extremities

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full

@Martial, I do wonder about CVID. The frequent & severe/prolonged infections thing has been with me forever, making it also difficult to exactly date the onset of my ME.

 

[justy]

Some of those symptoms sound a lot like CVID Justy. Though usually that is something that happens from birth, as in during your teens and early adulthood you would have gotten way more sick then normal. I don't know how long you have been dealing with illness personally though. Interesting enough a lot of infections can cause a secondary form of Immunol deficiency from the body being over whelmed fighting something off for so long. IVIG is usually very helpful in these cases.

I had repeated bronchial infections and flus etc throughout my childhood and teens. I had pneumonia first at ten, then mono at 13 I had repeated tonsillitis and Quinsy twice before age 12. My best years where about 16 -20, but even then I had chronic bronchitis a lot. I always had terrible flu every winter.

I was first ill with M.E at age 25, then had a long remission to near normal (although lung/chest infections continued) from age 28/9 - 37 when I had a severe relapse due to catching measles from my kids (even though I had been vaccinated as a child) I then had pneumonia again and have never recovered from a severe/moderate state.

The GP checked IGG etc (but not subclasses I don't think) a couple of years ago and declared all normal.
I will be starting monthly IVIG in November, but need to travel from the UK to Brussels to have it - so hard work for me. I'm not really sure how CVID is diagnosed?

Sorry not to reply to other peoples comments right now - this psot has got long enough! But I think there are many of us with this problem - could be immune dysfunction from something other than immune deficiency syndromes - my M.E doc says its ue to bacterial infections - I have two, possibly three, perhaps for many years.

 

[justy]

I also had conjunctivitis a lot as a child and teenager, sinus infections all through teens and 20's and 30's. In my 30's it was found I had a persistent HPV infection that was causing cervical changes. I decided against surgery to remove the abnormality as the HPV usually clears - mine persisted, to my gynaecologists amazement for 7 years, at which point we decided to treat with a LETZ procedure which made me very ill afterwards.

 

[mermaid]

I too have had the immune dysfunction issue for a long time with my ME. I tell people that I have a cold virus coming on, and I get just a few months often in the summer where I get a break from it.

However it's always worse in wet weather, and I live in a damp climate. I have had a lightbulb moment as I realise that SOME of my virus issue is probably not virus at all but allergy, and yet the symptoms are SO similar. I think in my case it's probably allergy to the moulds in the atmosphere.

The reason I know this to be true is that I bought a nasal spray made by A Vogel called Pollinosan Luffa Spray, and it is for allergy relief. After 3 weeks worth of sore throat and nasal passages and generally feeling lousy I remembered that I had it, and thought I would try it. After about 3 treatments and half a day my symptoms had improved. This has happened in the past when I used it.

Mind you, when I have had blood tests done by the GP (infrequent) they seem to show that my immune system is struggling too - low lymphocytes for example.

I too had pneumonia as a child, plus glandular fever, and frequent severe sore throats. Then I had a period of relative health in my 20s and 30s.

 

[Raindrop]

Hi, Justy,
I have a terribly bad immune system. I catch every cold/ every flu etc. When I catch something I am VERY ill,and much more so than others who get sick. I also often have a very high fever (i.e. sometimes 103 when normally have sub-normal 96 or 97 degrees.) Twice I should have gone to the hospital, but I fear getting worse there.
When I have gotten an acute virus in the last few years I also am sick for weeks or even months. The last sinus infection I had lasted over a Half Year!!! (My history is also having a very poor immune system in childhood and all the way through to middle age)

Finally, last winter, (after suffering nearly non-stop infections the year before)
I went to the battle ground. I stayed away from people as much as possible. I washed hands and used anti-bacterial sprays constantly and was a huge "germ phobe" in any bathrooms. But the BEST prevention was
deciding I had to go into ALL DOCTOR OFFICES AND CLINICS, ALL DRUG STORES and GROCERY STORES with an Anti-Viral Mask on). This was real HELL and I felt I was suffocating, but I got fewer infections last winter. I can't stand having to live like this, but it was ultimately better than being non-stop bed ridden. I now carry the AntiViral masks in my purse and in my car and buy them in bulk.

It is so sad, embarrassing and uncomfortable to have to wear face masks all over the place. But you might consider getting them to put on particularly when you are entering medical settings where sick people go (PARTICULARLY IN A GENERAL PHYSICIAN'S OFFICE!) and in Drug Stores (also where sick people go) if nothing more. Be vigilant to extent you can. This may may a difference.

The other suggestion I have is to get an Immunoglobulin Pannel done which tests for IgG, IgE, IgA, IgM,etc.
I did so and it TOTALLY explained why I am getting sick all of the time. Almost NO immunity.

If you can, please let us know how your Gama Globulin shots work for you and what your experience is .
Best of Luck!! I also hear there there is this VERY very serious NEW Enterovirus going around in the USA
that is hitting children particularly bad and most require hospitalization and even ventilators!!
Don't know if it reaches to you, but Wow....Scary stuff is ahead this winter it seems, at least in the USA.