What the H*** is Going On? I feel like I'm dying.

[HelloGoodbye]

Hi everyone,

Thank you for the considerate thoughts during this awful time. As I have feared, my aluminium blood levels came back today and they were HIGH. It corresponds with my severe dry skin all over my body. I will continue to pursue ALL your suggestions but for now...

Edit: false alarm. My aluminium was “high” but right on the border of acceptable range of 7. ((mine was 7)

-HG

 

[bread.]

I agree that the vaccine may have triggered some auto-immune reaction. This is a serious track to explore quickly.

Hi, I had pretty much the same issues now over 18 month ago in 2016, I fell sick after Tetanus Vaccine, got better and now have severe POTS and ME, being bound to bed 95% of the day and I feel like still regressing.

What would you explore quickly and how? What could be done about it in your opinion?

Thank you so much.


Best,

Christoph

 

[Learner1]

Have you had your immune system tested? T cells, B cells, immunoglobulin with subclasses, NK cell function? Have they tested your cerebral spinal fluid?

As for autoimmune, attached is a compilation of tests many of us have had, and many of us have found.

Best wishes...

 

[Alexi]

Have you had your immune system tested? T cells, B cells, immunoglobulin with subclasses, NK cell function? Have they tested your cerebral spinal fluid?

As for autoimmune, attached is a compilation of tests many of us have had, and many of us have found.

Best wishes...

Are these tests readily available or specialist lab tests ?

 

[bread.]

hi Learner,

thank you so much.

Can blood be sent internationally to these labs?

Is there anything else that can be done when I think vaccination was an issue?


THANK YOU

 

[2manyhobbies]

Sorry to hear youre feeling bad, I was thinking right along Caledonia's mind track with the metal poisoning. It sounded so much like symptoms Cutler describes in Amalgam Illness.

I had a tetanus booster a couple years ago and it really messed me up for a while. I had asked the E.R. staff if the vaccine had any thymerasal and they said nope BUT it had lots of aluminum I later learned.

Vitamin C as sodium ascorbate is supposed to be pretty good at chelating aluminum as is Chlorella/cilantro.

You will get better--never give up trying.

 

[Vineyard1]

I read the title of this post and feel this way after having a tetanus vaccine at Christmas. I was so ill with severe serum sickness and hospitalized for 5 days.
Initially.the Doctor thought I manifested all the HORRIFIC signs and symptoms, apparently including my elevated ESR and resting heart rate of 130. A knowledgeable physician was able to figure out the Tetanus protein was interacting with the recently infused IVIG antibodies. After three weeks of steroids the serum sickness was alleviated and I am still left with a nightmare.
I am working with a skilled Homeopath and Naturopath to help move through this as I am writing to you from bed...4 months post vaccine. I am able.to be up, in my house, about 4 spaced out hours per day.
Currently, I am taking Zinc 50mg, Vitamin C.5000mg, Selenium 200mcg, Vitamin D 5,000mg, Vitamin E 400IU daily, low dose Naltroxene...Glutathione injections weekly and Homeopathic protoccols using Field Control to determine the treatment...the Homeopath was also able to obtain the Remedy specifically for the Company that manufactured the Vaccine and aluminum is a key player as well. I am homozygous MTHFR and utilizimg Metanx and Hydroxocabalamin injections for B support...I had POTS prior to the Vaccine and it is significantly worse since then necessitating a change in medications.
My signs and symptom list is severe and long. You have my sincere empathy and best wishes for a light at the end of this tunnel.

 

[maybe some day]

Im due for a tetanus booster...I think I will pass tbis time

 

[2manyhobbies]

I will never get another vaccine of any type--only benefit big pharma...
I read that hydrogen peroxide kills tetanus bacteria oncontact.

 

[Wishful]

Im due for a tetanus booster...I think I will pass tbis time

The last I read about it, a tetanus vaccination lasts for about 60 years, and maybe that's just as long as they have statistical records to back up the claim. How many years did your doctor claim your last vaccination would last? Vaccination marketers probably suggest a rate far more frequent (profitable!) than the research suggests.

 

[2manyhobbies]

They suggest every 5 years now i think

 

[maybe some day]

The last I read about it, a tetanus vaccination lasts for about 60 years, and maybe that's just as long as they have statistical records to back up the claim. How many years did your doctor claim your last vaccination would last? Vaccination marketers probably suggest a rate far more frequent (profitable!) than the research suggests.

Good question..I believe its every 10 years..and it makes me very sick. I dont need to add insult to injury this time around

 

[Wishful]

If the marketers and executives had their way, the recommendation would probably be twice daily.

I don't recall where I read (online somewhere) the 60 year duration for tetanus vaccinations, but it seemed a credible source. A quick google search shows some articles claiming 30 years.

 

[HelloGoodbye]

So just an update. Since I felt like death a few weeks ago, I've had a noticeable increase in dry skin across my body. It's very strange. I still have the very subtle pink/reddish flushed hue throughout my arms and legs. I also developed muscle aches that initially began in my left deltoid and spread to various spots on my limbs throughout the week. I thought, for sure, I had macrophagic myofasciitis at this point. However, very oddly, most of those muscle aches have nearly gone away after I changed my diet from a strict rice/chicken diet to a healthier nutritious diet. It was severe before, to the point I was taking anti-inflammatories every night but most of the muscle pain is gone. Also myalgia from MMF usually manifests later on but we'll see.

As of right now, I have this brief minor sprain-like pain in my left deltoid every time I raise my my arm while it is in a supinated position. Skin dryness throughout my body is still there.

I've had a large amount of blood work that all came back relatively normal. However, I have found out that I have a HIGH B6 value of 50 (normal is 2-21). It's literally the only thing that is abnormally high so far. I do not take any supplements besides turmeric and cod liver oil, which I am stopping now so I don't know how this can be. Maybe I have the MTHFR gene mutation? Maybe there's no significance? Maybe 50 isn't even that high although it's more than 2x the normal limit)?

I also have "low" C3 & C4 levels of 77 and 15 (normal is 79-152 and 16-38, respectively). It's right below the cut-off but it's still significant because a month prior, my C3 & C4 levels were 91 and 16 so they've decreased since then. My ALT is also strangely 0.

I am back to my pre-post levels. I still have the chronic fatigue, the depersonalization/cognitive isssues, etc.

 

[HelloGoodbye]

@Learner1 I have had my immune system tested for the most part, I believe. CBC, IGG, C4/C5, etc. Everything turned up normal except for what I described above.

@maybe some day @2manyhobbies @Wishful I'm never touching another vaccine with aluminium in it (most vaccines). After the research I've done following my hellish experience? Hell no. These doctors have literally no f*cking idea to what extent these vaccines cause devastating damage. No idea and it scares the hell out of me. Furthermore, if something DOES go wrong, they're left absolutely clueless. I just experienced it through this circus of doctors. Vaccine companies? As long as they get their billions, they don't give a shit if we suffer. Why change anything?

@Vineyard1 Wow, I'm sorry to hear that. Although what we're going through isn't exactly the same, we're both going through similarly tough situation starting around the exact same time. It's been a rough 4 months for you too, I can imagine. I hope you get find a way to continue to improve your situation, step by step. I think you and @bread. might be going through something similar.

 

[pattismith]

S
I also have "low" C3 & C4 levels of 77 and 15 (normal is 79-152 and 16-38, respectively). It's right below the cut-off but it's still significant because a month prior, my C3 & C4 levels were 91 and 16 so they've decreased since then. My ALT is also strangely 0.

I didn't investigate C3/C4 very much, but I found they are markers for Systemic Lupus Erythematosus flares when they decrease:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3086056/

and more generally "Decreased complement levels also are associated with an increased risk of developing an autoimmune disease."

https://labtestsonline.org/tests/complement

It may be that the vaccine triggered an auto-immune reaction in your body

 

[2manyhobbies]

If changing your diet has brought about change you may conclude that was part of your problem. You must understand that most commercial chicken has arsenic added to it's food as anantiparasitic and rice - if from China- has been shown to have pesticide residues.
Never any chickens from Aldis and Organic from Wal-Mart are pretty clean from what I've experienced. Any rice i would eat would have to be Organic, it's not that much more money.

Some get stuck on "the diet" that seems to work for a while but long term you need a greater diversity to get all nutrients .Don't overlook your gut as it's crucial to healing.

 

[GlobeGirl]

Have you had your immune system tested? T cells, B cells, immunoglobulin with subclasses, NK cell function? Have they tested your cerebral spinal fluid?

As for autoimmune, attached is a compilation of tests many of us have had, and many of us have found.

Best wishes...

Learner - Thank you for that list of tests. It is quite exhaustive and begs some questions:
1) Where did that large list come from?
2) What would a Doc do if I handed that to him or her? Esp if they don't know much about ME?
3) If you did the whole panel and the results of 6 or 10 of them showed as out-of-range, is there a reasonable approach for trying to get that many things back in line?

Also, does anyone reading know of a place on this website, or any other, where fairly complete stories were posted about someone who experienced significant improvement? I specifically mean that the write-up includes this:
1) Whether they had quick onset or slower? And, if quick, can they attribute it to a specific event?
2) Do they have any reason to believe that a vaccination may have been a factor?
3) Details about what symptoms they suffer the most and if they change given the time of year, type of food or supplements consumed, etc.?
4) What specific tests they had. Which ones showed out-of-range? What did they do to try to get those back into line? Did it work? Were there side effects?
5) What do they attribute as being the biggest factors in their improvement?
6) What symptoms do they still endure and to what degree?

I'd love to read the nitty gritty about an significant improvement stories. Thank you!

 

[Learner1]

Learner - Thank you for that list of tests. It is quite exhaustive and begs some questions:
1) Where did that large list come from?

It was compiled by 3 or 4 patients around here.

2) What would a Doc do if I handed that to him or her? Esp if they don't know much about ME?

There is no substitute for being your own best advocate. Dig through the list. Look at yhe symptoms each antibody produces. See what fits your situation and point thst out to your doctor and ask to be tested for those that make sense.

3) If you did the whole panel and the results of 6 or 10 of them showed as out-of-range, is there a reasonable approach for trying to get that many things back in line?

I have 4 separate autoimmune problems. As my doctor, a top ME/CFS specialist, told me, once you have one autoimmune problem, you tend to collect them.

IVIG, Rituximab, Bortezimub, and plasmapharesis are treatments. An anti-autoimmune diet can help. So can immunosuppressants and drugs that teduce symptoms, like MCAS meds and POTS meds.

Also, does anyone reading know of a place on this website, or any other, where fairly complete stories were posted about someone who experienced significant improvement?

There are 2 people on this website who were very ill with sone very nasty antibodies and got well through combinations of the treatments I mentioned. They have extensive stoties over months/years of their treatment and recovery, and they both have improved quite dramatically to getting on with their lives. There are others, I'm sure.

I specifically mean that the write-up includes this:
1) Whether they had quick onset or slower? And, if quick, can they attribute it to a specific event?
2) Do they have any reason to believe that a vaccination may have been a factor?
3) Details about what symptoms they suffer the most and if they change given the time of year, type of food or supplements consumed, etc.?
4) What specific tests they had. Which ones showed out-of-range? What did they do to try to get those back into line? Did it work? Were there side effects?
5) What do they attribute as being the biggest factors in their improvement?
6) What symptoms do they still endure and to what degree?

I'd love to read the nitty gritty about an significant improvement stories. Thank you!

Yes. Look up the threads on "anti-NMDA antibodies" and "Rituximab."

 

[GlobeGirl]

Learner - Thanks so much the good information. It seems clear that to achieve any real success/improvement I'd have to be working with a Doc that some decent experience helping people with ME. Would you agree with that?

I'm not one who likes, or even tolerates very well, the guinea pig experience. So between me and a Doc inexperienced with this disease trying to figure it out....well, I anticipate poor results. I just had 7 blood tests done by an endocrinologist and I liked her but could see she doesn't know much about how to help with ME.

What type of Doc tends to have the most awareness of this disease? An immunologist? Thank you.