Could I ask, were all normal: lab tests, thyroid ultrasound and scintigraphy?
Laboratory tests: free thyroxine FT4, free triiodothyronine FT3, thyroid-stimulating hormone TSH, thyroperoxidase antibodies TPOAb, thyroid receptor antibodies TRAb, thyroglobulin antibodies TgAb, thyroglobulin, C-reactive protein CRP, erythrocyte sedimentation rate ESR.
@josephduncan: Thanks so much to taking the time to post your success story. There are so many of us that need to hear these. Quick question, did your tinnitus also resolve? Thanks.
Yes, it resolved as the head pressure disappeared.
@jpdevoys when was your jab?
My second Pfizer jab was on April 27 last year and my first symptoms started on April 30. I guess it will soon be my 1-year anniversary of injecting that poison in to my body. Something I certainly won't be celebrating.
How are you today?
Who got POTS and recovered?
@josephduncan: Thanks so much to taking the time to post your success story. There are so many of us that need to hear these. Quick question, did your tinnitus also resolve? Thanks.
Yes, it resolved as the head pressure disappeared.
Thank you, that is very good news. And congrats on your recovery.
@saba there is a few others on here with sleep issues. I sleep and wake now faithfully every two hours no,matter what I take. I pray it comes back. How did yours come back? Gradually?
Hi Susie, mine was very very gradual, definitely nothing sudden. Maybe like 30 minutes improvement each month. Went from sleeping zero hours to 30 mins to 1 hour to 2 hours...etc. Stretches kept increasing until I came back to normal to 6 plus hours in about 7-8 months. It was brutal. I did take benzodiazepines for a couple of weeks which definitely helped, but I didn't want to be on them for long so suffered in between then was given Lunesta, which I only took for 4 weeks then tapered it off. Didn't feel good about staying on it as well. In hindsight, I should have just stayed on it until everything normalized. But I did tough it out for several months. I am sorry you are going through the same. My issues started in March 2021 and even before that for so many others. Only if they had acknowledged it and put out warnings about it so many others like that got the shots, later on, could have been spared. Even to this day, there is no recognition of this and many other side effects. On the other hand, they are still pushing them as being safe. The insomnia issue you going through is nothing short of torture that lasts for months. Still pushing these vaccines as safe- if that is not criminal, what is? Hang in there, your sleep will come back to normal, do what you can, talk to your PCP for meds, etc. until it normalizes.
Hi everyone. To share my experience to add to others, and if it might help someone ... (not posted sooner as have been too unwell and with my limited capability needing to focus on doctors’ appointments, etc, but reading this forum has been a great help).
I had my first Astra Zeneca injection Aug 2021. Had flu-like symptoms for 3 days, but I thought just ‘normal’ side effects. Although, with hindsight, I had hot, itchy soles of feet, and a pain in the heart / sternum area during subsequent weeks and months, but did not make a link to the vaccine at that stage.
8th Oct 2021, I had my second AZ jab. The very next day, moving some boxes, I got incredibly dizzy. I had to hang on to walls or furniture to stop myself falling, and got breathless very quickly and needed to take breaks very often. Over the next 2 weeks I had some holiday days and some work days, I continued with normal activities, but the dizziness remained, in fact it built in intensity, my heart would pound on any slight exercise, with chest pain or tightness, and I became incredibly fatigued, needing to sleep 12+ hours each night.
Very soon, I could not continue at work (running meetings on-screen, plus email and spreadsheet work), the computer screen made me so dizzy, my vision was ‘off’ and I could not concentrate on what people were saying or mentally process information. My hearing was super-sensitive and at social events I could not tune in to what people were saying and the whole noise / movement of people was overwhelming. I started to get pangs of anxiety. (I have had situational anxiety before, but recovered well each time). Soon I was having full-on panic attacks. Doctors of course diagnosed anxiety. They offered SSRIs, which I accepted. I had to move beyond the panic attacks (which I now have) before I could deal with the root cause, but I knew the root cause was not anxiety.
The next six weeks were a blur, I was largely bed-ridden and house bound, and could hardly function to eat, shower etc. Dizziness would flare whenever I moved, or whenever things moved in my eyesight. I felt lightheaded, like walking on a boat. I needed lie-down rest after any short period of physical or mental activity. Plus, other symptoms: insomnia, aches across forehead and at base of skull, head pressure in sinuses, behind eyes, in ears; a feeling that my head is too heavy for my neck. Weird body sensations: numbness or aches in inner arms, hands, legs; burning sensation - sometimes feels like menthol – stomach, chest, legs, feet; inner body tremors - feels like all muscles are shaking inside or pulsating, or welling. Huge sensitivity to noise and light; vision feels like eyes are delayed or clouded or not working in sync; ringing and whistling in ears. Difficulty thinking, concentrating, having a conversation, and easily forget things.
My ability to function is significantly reduced. I’ve been off work the whole time. (I am grateful my Company offers sick pay). I have largely stopped driving, or even being a passenger in a car other than for short distances or doctors’ appointments. Some of my symptoms have lessened as I have learned to pace myself and build-in rest before and after activity, but the dizziness and nausea is still near-constant and I cannot live anything near my normal life.
Doctors initially said it’s a virus, I should rest and give it time. Then, it is anxiety. They gave medication for dizziness but it did not help. Then, they agreed it is a physical condition, maybe a post-viral illness which could have been triggered by virus or vaccine, or maybe long Covid or chronic fatigue or ME. My GP will exempt me from future Covid vaccines, but not all doctors I’ve seen are ready to make the link to the vaccine. I’ve been through Cardiologist, all tests OK. Next I go through vestibular testing with ENT Consultant.
This has been one of the most difficult things I have ever had to deal with, I feel for everyone going through something similar. There is so much uncertainty, which I can understand to some extent with Covid and the vaccines being so new, but it’s also a very isolating position, not knowing a firm diagnosis or if and when we will recover, or to what extent. It’s life-changing, and I’m just hoping it is not permanent. Best wishes to everyone on their journey.
Sorry to hear you’re going through this. Everyone in this forum is battling this covid vaccine injury. How have you been doing?
@margaret2022 So it's about a month since my last post, and I'm six months since second vaccine and onset of symptoms. I think I am seeing some very slight progress, but it is really really slow. I was diagnosed with damage to the inner ear. The most obvious two symptoms are dizziness and nausea. I'm still really struggling with both of those. I have them a lot of the time, although lying down and not looking at anything will allow them to settle. I'm working on vestibular rehabilitation exercises each day, and very very gradually I am starting to do more general activity, like I can now do a 45-minute walk, and can work on a PC screen but only for about 20 minutes before the nausea means I need to take a break. I am still so easily fatigued compared to normal, need rest after every activity, and not yet able to work again, I am exhausted long before the end of every day. However, some of my earlier symptoms like pins and needles, vision problems and pain at base of skull have gone away. My ENT Consultant told me recovery from a vestibular condition like this can take 9-12 months. As he said, it takes real determination. I am certainly feeling that. But, the improvements however small and slow give me hope. Thanks for asking, and best wishes to all.
Do you have other symptoms along with your dizziness?
do you have any eye issues?
do you have any hearing sensitivity?
any head buzzing? Or ear buzzing?
@margaret2022 Yes, I have, or have had, all of those (eye issues, sensitive hearing, and buzzing / whistling in ears / head), and more - see my earlier posts for descriptions of symptoms. I think I'm learning that most of the symptoms I still get tend to flare together when I get "over-stimulated", which can be by not very much at all causing the stimulation, e.g. just sunlight, or the 20 minutes at a PC screen I mentioned. My doctors encourage me to start socialising again, starting very small, so on a few occasions I've had family or close friends round for a coffee. But I can only manage about 15 minutes. I currently find socialising more difficult than walking, for example. It seems the stimulation of people moving their hands etc while talking, and me trying to follow the thread of the conversation, while taking in whatever is happening visually and staying upright, flares dizziness, nausea, tinnitus, cognitive difficulties and anxiety. I find this really upsetting. But, I'm confident the anxiety is a result of the vestibular condition - the brain / body not feeling safe when dizzy and nauseous - so I hope all symptoms will gradually improve with time, as the brain compensates.
@saba thank you for your response it gives me some hope. I do sleep two hours at a time and wake up. At this point, sleep is sleep. It is torture. I used to hate night time, now I actually feel sleepy when I go to bed. I try to keep the same schedule every night.
@saba the other issue I have is that my arms get cold and fall asleep if I lay on my sides. Anyone else heard of that or have that ?.
Has anyone already tested Maraviroc?
It is what Dr. Patterson's group is recommending, in addition to statins, for some patients with long-covid and for some covid vaccine long-haulers.
Maybe @krista @gingerjones @heybro @libbysimon @ncoleston might have a better opinion on whether Maraviroc is a good medication to consider for vaccine long-haulers and if they know of any side effects?
Thanks!
What statin do you recommend? I know several people on Maraviroc. They have mixed results to say the least. It's better than doing nothing but I don't know anyone who was cured by it (yet).
I have not started the maraviroc yet. Had an appointment with a doctor to go over the Patterson protocol tomorrow but he was called out of town for a family emergency. My appointment has been rescheduled to May 12. They want me to take maraviroc, pravastatin, and prednisone (5mg)...I will tell you I was on Ivermectin, pravastatin, and prednisone from Oct through Jan, and when I had my bloodwork redone the results were higher than they were the first time they did my bloodwork...I did not have good results...
@jpdevoys when was your jab?
My second Pfizer jab was on April 27 last year and my first symptoms started on April 30. I guess it will soon be my 1-year anniversary of injecting that poison in to my body. Something I certainly won't be celebrating.
How are you today?
I'm doing ok, thanks. Still suffering with neurological symptoms (muscle twitches, soft palate issues, burning mouth, tinnitus), but the brain fog, chronic fatigue, dizziness, near syncope spells, etc, have subsided significantly. For sure, my nervous system (neurons) was damaged during the first few months of this nightmare and my doctor tells me it takes a long time for nerves to heal.
Has anyone already tested Maraviroc?
It is what Dr. Patterson's group is recommending, in addition to statins, for some patients with long-covid and for some covid vaccine long-haulers.
Maybe @krista @gingerjones @heybro @libbysimon @ncoleston might have a better opinion on whether Maraviroc is a good medication to consider for vaccine long-haulers and if they know of any side effects?
Thanks!
What statin do you recommend? I know several people on Maraviroc. They have mixed results to say the least. It's better than doing nothing but I don't know anyone who was cured by it (yet).
I have not started the maraviroc yet. Had an appointment with a doctor to go over the Patterson protocol tomorrow but he was called out of town for a family emergency. My appointment has been rescheduled to May 12. They want me to take maraviroc, pravastatin, and prednisone (5mg)...I will tell you I was on Ivermectin, pravastatin, and prednisone from Oct through Jan, and when I had my bloodwork redone the results were higher than they were the first time they did my bloodwork...I did not have good results...
I am sorry to hear this. Some of these drug protocols deliver mixed results.
The one person I know who did get 100% better who was on these types of drugs, took these things:
milk thistle for mast cells
Ivermectin and Atorvastatin
Medrol pack - 5 day - methylprednisone
There was a conference last week called the Long Covid Solutions Congress which involved presentations and discussions between the major players involved in researching long Covid and long vaccine (which has been shown by the researchers to be the same condition requireing the same treatment).
Here is the video link to the Long Covid Solutions Congres -
It is quite long, but I have also attached a document I made up with some time codes that may help you watch it faster and save you time.
I have also attached the research papers from Patterson and Pretorius you may wish to read through.
Here is a summary of the congress:
Overall concept is to treat Pathogenesis not just symptoms
Symptoms often confusing and long haulers have shown 230+ symptom presentations with much variation within individuals.
Early intervention is essential as the information available suggests that the longer symptoms and underlying pathogenesis are left untreated the more difficult a full recovery will be.
Persistent Monocyte Theory - Bruce Patterson
There is persistence of non-classical monocytes that are causing ongoing inflammation and dysfunction and ?vascular endotheliitis
They have identified specific Cytokine / Chemokine levels linked to specific symptoms experienced by both long Covid and long vaccine patients (they are one and the same). Identified Biomarker fingerprint for each type of long hauler (Patterson research) with defined and published diagnostic algorithm. I have attached the Cytokine levels tables to this email.
Diagnosis:
-
Unfortunately the full range of cytokine tests are not yet available in Australia, they may be in Germany
-
Can monocyte analysis be performed with differentiation (with flow cytometry to detect CD16+)?
-
Is diagnosis even needed given the symptoms and the Patterson research and cytokine patterns they have discovered?
Treatment?:
Treatment options showing promise include:
-
Maraviroc / Statins therapy to block Fractalkine and CCR5 to allow persistent monocytes to die off (reducing irritating factor). STATINS ESPECIALLY. Research paper attached to this email.
-
Repurposing existing therapies to treat cytokine elevations specific to symptoms that are presented in the table attached to this email.
The theory is that crossover with contributing factors of pre-existing conditions / immune sensitivity history etc may make absolute fix a challenge.
Microclot/Platelet Hyperactivation Theory - Resia Pretorius
Data suggests that patients are forming microclots in response to spike protein initiated Platelet hyperreactivity. Microclots are lysis resistant and envelope the inflammatory biomarkers that may be easily used to detect them (no D Dimer elevation)
Diagnosis:
-
It is possible to show diminished capacity of CV system with venous oxygen saturation analysis (sVo2 easy test). Suggesting cellular hypoxia.
-
Can be visualised on SEM. Possible even on standard light microscope
Treatment?:
Treatment options showing promise include:
-
Pharmaceutical intervention (requires enzymatic blockade of new clot formation as well as reduction in Platelet hyperreactivity). Unsure of which pharmaceuticals would be used in this?
-
Mechanical filtering using H.E.L.P Apheresis. Beate Yager in Germany has been having success as clots (containing inflammatory protein envelopes) are removed completely. (Similar process to dialysis where special filters are used once blood is routed through a machine and then returned to the patient.)
Apparently when the pharmaceutical method is used, as the clots are dissolved there is a subsequent release of cytokines that can leave patients feeling worse before feeling better, so the mechanical filtering method seems to be the better option if available.
Video Links:
Resia Pretorius speaking to Dr Amy Proal explaining microclot theory and treatment possibilities
https://youtube.com/watch?v=C8tzTmVwEpM&feature=share
https://youtu.be/h_LZSh9k-zU (BBC story reporting on HELPO apheresis)
Dr Tina Peers presentation
Part 2 of the presentation has Dr Tina Peers who talks about MCAS involvement 6:12, treatments modalities in sequential arrangement)
She discusses low dose Naltrexone therapy for neural dysfunction tingles etc and a low histamine diet benefits for some subsets of patients (this is definitely me and I am already doing a low histamine diet but may benefit from the Naltrexone which I am sure you already know about as you mentioned this to me last time)
Vedicinals Group
There is also another group that presents at the conference who are based in India who have had good results treating over 5,000 long Covid and vaccine patients with their product called Vedicinals-9 https://www.vedicinals.com/
They are based in India and working with the German team. They ship their products to Australia and are happy to chat to you on Facebook Messenger and Whatsapp and chat to you via a voice call through Whatsapp. Their Wattsapp number is +91 7567499944. The man told me about the German company doing the apopheresis - maybe you can call and ask him about that too.
Has anyone already tested Maraviroc?
It is what Dr. Patterson's group is recommending, in addition to statins, for some patients with long-covid and for some covid vaccine long-haulers.
Maybe @krista @gingerjones @heybro @libbysimon @ncoleston might have a better opinion on whether Maraviroc is a good medication to consider for vaccine long-haulers and if they know of any side effects?
Thanks!
What statin do you recommend? I know several people on Maraviroc. They have mixed results to say the least. It's better than doing nothing but I don't know anyone who was cured by it (yet).
I have not started the maraviroc yet. Had an appointment with a doctor to go over the Patterson protocol tomorrow but he was called out of town for a family emergency. My appointment has been rescheduled to May 12. They want me to take maraviroc, pravastatin, and prednisone (5mg)...I will tell you I was on Ivermectin, pravastatin, and prednisone from Oct through Jan, and when I had my bloodwork redone the results were higher than they were the first time they did my bloodwork...I did not have good results...
yeah this: They want me to take maraviroc, pravastatin, and prednisone (5mg) is exactly Patterson protocol.
Prednisone i took the last time it did not help, so I stopped it.
I am taking Rosuvastatin.
The Patterson Group uses pravastatin because it does not interact with Maraviroc.
Strange that you had the first time bader blood results with Ivermectin, pravastatin, and prednisone from Oct through Jan?
Did you ask them why?
@saba there is a few others on here with sleep issues. I sleep and wake now faithfully every two hours no,matter what I take. I pray it comes back. How did yours come back? Gradually?
I'm sorry that insomnia is such a persistent symptom, you have told many times about it.
You also said that you follow a diet without histamine and that you take Benadryl, thus it is understood that even antihistamines do not help you sleep, which shows that there is a strong cause for insomnia.
I could ask you what value is TSH, in your case? Is the most important lab test, of those that are used to investigate the thyroid, to see if it works in excess.
Hyperthyroidism could be suspected, in your case, for symptoms about which you told, such as: insomnia, weight loss, nervousness, palpitations, sweating.
Of course, it must be understood that, unfortunately, the disorders are complex, and probably have several elements, it could be, for example, a hyperthyroidism, but also an inflammation of the nervous tissue (explaining the numbness of the arms, the burning pain), both are side effects known to happen.
A natural treatment for sleep that I know from some people in the countryside is california poppy (eschscholzia californica).