Cortisone can be dangerous if you have an infection. Some people crash into CFS by taking it. I feel I have a number of infections so wouldnt risk it.I did take isocort and that helped a little but then made things worse. If I was sure there was no infection I would try it.
If I do have lyme, I may have had it my whole life. And it only came active when something else broke down the immune system. I need to get eosiniphils and ige down as they were normal prior to PFS.
Well my nose feels worse after removing the cyst. I feel like they took some other tissue and now it is not regulating well and too much air is comming in the left, drying it out and waking me up. I hope I have not created more problems for my self.
The eosinophils issue is still unknown, why have my eos been over range for so many year? The immunologist said to try deworming pills. I will give that a go.
There is something called Eosinophilia-Myalgia Syndrome which happened after people ate tainted supplements and foods. Kind of like PFS.
rarediseases.org/rare-diseases/ … -disorders
Some studies suggest blastocystis hommonis which I have found in 3 stools may cause eosinophilia. No one has suggested treatment for this as drs consider it benign. I am trying to treat it now with herbs and cutting all carbs but vegetables for a month or so. I am also taking some herbs for it.
I am sure of it. The eosinophils are a central issue for me. 2 years before PFS my eosinphils were normal. When I crashed there was a massive shift in the immune system. I suddenly got psoriasis, my scrotum became pink, my digestion fell apart etc. I do think this was due to a suddenly increase in eosinophils and IgE.
The question is, how could fin suddenly cause this? If it is an autoimmune type reaction why do I have red spots on the lymph nodes in my throat? The enlarged lymph nodes on my pharynx seems to be consistent with the high eosinophils and IgE. It is called cobblestoning and is found in allergies, allergies are mediate by eosinophils and IgE.
I believe this arm is called the th2 arm of the immune system an asthma is considered a th2 related immune system disease. I had asthma for a number of years before the age of 5. So maybe I am predisposed to such things? The big question is what is activating the eosinophils and IgE? Why are they in my nose? What are they fighting?
I am not sure if I mentioned it already but I tested for mycoplasma pnumonia and chlamydia pnumonia and they were both negative.
I did try doxycyclin for about a week and felt no improvement in any symptom so I stopped. I think it also caused some palpitations.
The dr wants me to try albendazole to clear out any worms which may be increasing IgE.
So for now I am sure that the eosinophils are central to my problems.
I took a small dose of prednisone and the muscle twitches seem to get worse. If my elevated eosinophils are related to an autoimmune condition the treatment would be prednisone.
longecity.org/forum/topic/61 … et-better/
Anyone explain this? He went on holidays had digestive problems took an antibiotic then developed PFS like symptoms.
I asked these questions on a chronic fatigue group. Totally unrelated to PFS. Seems the same as PFS?
I tried metranidozle for my blastocystis. Did not feel any improvement and started feeling dizzy after a number of days so quit. So no antibiotics have helped. Still have pain in sinus, bumps in throat, crimson crescents etc.
I have been researching about my high IgE and Eosinophils it seems infections are the most likely thing. Just do not know what type or where. Doesnt seem to be in the sinus and some antibiotics do not seem to hit it.
D3 is also usually low in CFS like it is in PFS.
ABSTRACT OF THE PAPER FROM BERKOVITZ S ET AL (International Journal for Vitamin and Nutrition Research, 2009,79, 250 – 254)
Serum 25-hydroxy vitamin D levels in chronic fatigue syndrome: a retrospective survey.
INTRODUCTION
Patients with chronic fatigue syndrome (CFS) may be at risk of osteoporosis due to their relative lack of physical activity and excessive time spent indoors, leading to reduced vitamin D synthesis. We hypothesized that serum 25-OH vitamin D levels are lower in CFS patients than in the general British population.
SUBJECTS AND METHODS
We performed a retrospective survey of serum 25-OH vitamin D levels in 221 CFS patients. We compared this to a group of patients attending the hospital for other chronic conditions and to a large British longitudinal survey of 45-year old women, using a variety of appropriate statistical approaches.
RESULTS
25-OH vitamin D levels are moderately to severely suboptimal in CFS patients, with a mean of 44.4 nmol/L (optimal levels >75 nmol/L). These levels are lower and the difference is statis tically significant (p<0.0004) than those of the general British population from a recent national survey, but similar to those in patients with other chronic conditions. CONCLUSIONS This data supports the recommendation made in recent NICE guidelines that all patients with moderate to severe CFS should be encouraged to obtain adequate sun exposure and eat foods high in vitamin D. Oral or intramuscular vitamin D supplementation should be considered for those whose levels remain suboptimal. Dr Charles Shepherd
Hon Medical Adviser, ME Association
Let’s again look at some of the common symptoms between CFS and PFS.
Loss of libido
Muscle twitches
Crimson crescents in throat
Digestive changes
Low body temperature
Depression or emotional blunting
Anxiety
Muscle weakness
Muscle loss
Loss of muscle
Fatigue
Often d3 is low
Dark circles under eyes
Brain fog
Concentration issues
Suicidal thoughts
Frequent urination
Bad sleep problems in some
Waking up feeling unrefreshed
Not everyone from both groups have all these things.
In terms of recovery I think we see a similar pattern. Recovery is not easy and it seems a small percent recover. Often when others try to follow their recovery protocol it does not work. Recoveries generally are not due to pharmaceuticals. Some get lucky and make recoveries without much change to their life perhaps they attribute it to leading a healthier lifestyle.
2 other links I forgot to add
Bad t3/rt3 ratio
Abnormal gut mycrobiome tests.
So I saw a dr who is an expert in lyme a few months ago. He said quite a few feel better after they do the prep for a colonoscopy which clears out the gut.
So gave it a go. I do not feel any better but what I can say is that the ammonia smell from my underarms which started shortly after crashing in 2008 totally went away when my gut was cleared out. I also remember it went away in perhaps 2010 on my first try with TRT.
Do I attribute the ammonia smell to gut disbiosis. The question is what is causing this disbiosis? My gut semed perfect before PFS and changed pretty much overnight from what I remember. I am also sure my IgE and eosinophils went up around the same time. So hard to know what is causing what. For example if you get a viral infection this is going to change your digestion. What if it never goes away? Then you will have disbiosis until the virus is fixed.
After much searching I have no idea why my eosinophils and IgE went up when I crashed on fin. It does not seem to be fungus, I have blastocystis but treating this did not seem to help. I did many allergy tests and they were all negative. 3 parasite tests were netative apart from blasto, blood tests for some parasites were also negative. My autoimmune markers were also negative. So I have no idea, maybe a chronic viral infection, it can be high in HIV, which I do not have.
Body odor comming back after starting to eat. I tried a diet of just goat milk and vegetables this did not seem to change much at all.
I feel like dysbiosis is a big part of my condition but my digestion problems started almost overnight when I crashed so i wonder if it is just the symptom of a greater problem which can not be address without solving the greater issue.
So I am sure dysbiosis is a big part of this condition from all my testing and experiments. Some proof.
Ammonia body odor which goes away when gut is empty
Soft stools
Organic acid test showing high d-lactate which causes CFS, brainfog etc.
Total lack of bifodobacterium in stool
Total lack of lactobacilis in stool
High levels of strep and enterococus in stool
Overgrowth if citrobacter frundii in stool which some others have had here.
Persistent blastocystis in stool
If you search for all these things you will find they are typical in CFS patients. I can say for sure I had no fatigue before I took fin. Bouts of fatigue started after I crashed and got worse over the years.
From my research gut bacteria can affect the immune system. I am not sure if I can fix my gut before fixing the eosinophils and I have NO idea how fin set off permanent eosinophilia in my body and increased IgE. Eosinophils and IgE are part of the th2 section of the immune system. From my understanding this part of the immune system creates antibodies to destroy invaders and the th1 creates cells like macrophages which go out and fight. Over reactivity of the th2 side of the immune system seems strongly correlated to CFS.
I think if I can fix the eosinophils and IgE I will recover but doing this seems to be a total mystery. I have no idea what they are attacking. I have ruled out so many things.
My 8-OHdG was over the healthy range.
ncbi.nlm.nih.gov/pmc/articles/PMC2964729/
8-OH-deoxy guanosine (8-OHdG) is a commonly used and highly sensitive marker of total oxidative stress in the body. Upon DNA repair, 8-OHdG is excreted in the urine. Numerous studies have indicated that urinary 8-OHdG is not only a biomarker of generalized cellular oxidative stress, but also a risk factor for many diseases including CFS. Elevated urinary 8-OHdG DNA was detected in patients with CFS. Moreover, the level of urinary 8-OHdG in CFS correlated with the severity of depression and malaise [75]. Thus, increased activation of oxidative and nitrosative (IO and NS) pathways, plays a role in CFS. Moreover, measuring urinary 8-OHdG may be a convenient method for evaluating oxidative DNA damage in patients with CFS and could be a sensitive biomarker helpful for the early diagnosis of patients with CFS.
Here is a pic of the guy who went to a herb shop in vietname and asked for herbs to gain weight. He the got PFS after taken them. Notice the red throat. Why do so many of us have red throats?Maybe we had them before fin?
what kind of infection do you think you have?
blase : I have overgrowth of citrobacter. I have blastocystis and a test for lyme which some will say is positive others will say is negative. But at this point I not think those things are causing my symptoms. My symptoms seem to more relate to my high IgE and Eosinophils which started when I crashed on fin. I do not think the above things are causing the ige and eos. Others here have tested positive to mycoplasma.
I managed to keep my symptoms at bay for more than a year using a c. albicans desensitisation technique which by the way link my symptoms to it with certainty. So in my case something fungal related happened allergic or infectious.
Now I don t find any leverage anymore I feel utterly fucked.
