Dysautonomia

Dysautonomia and Chronic Illness Post Brain Surgery

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I wanted to share my experience going through thiamine paradox and my journey to heal. I am 27 year old girl from Italy and have been suffering from various health problems since I was 14 including a brain tumor that necessitated surgery, followed by Epstein Barr Virus, Hashimoto’s thyroiditis, multiple parasitic infections, antibiotic reactions, extreme and chronic fatigue, fibromyalgia, dysautonomia, SIBO, and gastroparesis. I have begun thiamine therapy six months ago and while some of my symptoms have improved, others have remained or worsened. I am not sure what to do next and am writing this in the hope that someone will have some answers.

Dysautonomia and Illnesses Post Brain Surgery

In 2008, I underwent neurosurgery to remove a benign tumor in my temporal lobe. It was very large, near the hypothalamus and on the optic tract. After that surgery, I was in sympathetic mode for about a year and a half. It was intense. I was always alarmed and anxious with school performance anxiety. I was exhausted, but at the same time, I had the energy to do more than I could afford. Furthermore, I gained 20kg in 6 months despite eating well. This was traumatic for me. Even though I did everything I could to not gain weight, the weight still went up. I felt powerless and I was pissed off. I did a thousand diets and I still fight to lose weight. I have been on a diet ever since.

In 2010, I got an Epstein-Barr viral (EBV) infection. Next, I developed Hashimoto thyroiditis and lost a lot of hair. My beautiful hair that was soft and silky, became sparse, few and very thin. I also had pain in my neck for two years. After that EBV infection, I started to feel tired all the time, but still managed to go out and go to school

In 2011, after a month and a half of pain in the lower back and abdomen, I had a fecal analysis done and  found that I had parasitic infection called blastocystis hominis. The doctor gave me metronidazole (Flagyl) in a very high dosage. When the pain in my right leg appeared, the suspicion that it was appendicitis became certain and they operated on me. The surgeon told me my appendix was was 12 centimeters, inflamed and had two abscesses.

In 2012, I had some months of extreme fatigue and abdominal pain. The seizures I had before my brain surgery returned, as did my inability to study due to lack of concentration. I then discovered that I had another parasitic infection, this time giardia. I was treated with Flagyl again. After Flagyl, I was infection-free for 6-7 months.

In March of 2013, I developed an acute onset case of what the doctor’s called a severe case of chronic fatigue, fibromyalgia, and dysautonomia. I had brain fog and was unable to focus. I had tingling in my neck arms. I started gaining again. I have episodes of dysautonomia with vagal crises that include palpitations and tachycardia so strong that even moving around in bed accelerates my heartbeat. Add to all of this a  plethora of other minor symptoms. In particular, I have become unbearably cold. Previously, I was the the person who was always in half sleeves. I have also mood swings that sometimes make me feel crazy (such as unexplained nervousness attacks). I felt I had no energy in my muscles and that I could not do anything. Even though and above all I was a girl full of energy and always very cheerful.

Failed Attempts at Healing

Since then, I have done many different types of therapies (homeopathy, mineral and vitamin integrations, neural therapy, micotherapy, osteopathy) with small and short improvements. In 2017, I did probably one of the stupidest things I’ve ever done before, I fasted for 16 days. I was convinced of the idea that it could cure my thyroiditis. After that, I started not digesting well, so much so that if I ate a little more than I should, I was throwing up, and the cold in my body became even more unbearable.
A few years later in 2019, after years of GI problems, that included gastroparesis/delayed stomach emptying, bloating and pain, I was diagnosed with SIBO (sulfur). I was given Rifaximin. I also tried a herbal therapy for SIBO, and for candida, which I also had, and NAC. Nothing worked.

Where I Am Now

I still have most of these conditions. Some symptoms have passed but new ones have emerged.  Overall, I am better than in 2013 when CFS started and I just couldn’t get out of bed.

A few months ago, I discovered Dr. Lonsdale’s work on thiamine deficiency and I bought his and Dr. Marrs’ book: Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition. I believe many of health issues involve thiamine deficiency.

I began with 15mg thiamine HCL injections daily for about two weeks and then increased it to 30mg per day. I also take B complex, magnesium, seleniomethionine, molybdenum, vitamin C, vitamin D, omega 3, zinc and copper because they were low in my blood exam. The first month I also took SAMe with many benefits, but now it seems to make things worse.

I eat only organic food. I don’t eat sugar, processed food, junk food, gluten, milk or dairy products, or alcohol. I have only one or two espressos per day and I eat a lot of apples because they are low in oxalates.

Thiamine Reaction or Something Else?

When I woke up on day 2 of thiamine, I saw that my eyes were swollen like balloons, there were some itchy blisters on my eyelids and around the eyes. In the morning other blisters appeared on my elbow and behind my neck under my hair. The morning of day 4, I woke up with a skin rash near the hip.

At the beginning, I had thought these reactions were relative to the thiamine, but I later realized that the hives and swelling were linked to the inositol hexanicotinate, a niacin substitute in the B complex. I have no problems with niacin though, just the inositol hexanicotinate form. From that episode forward, I began taking all the B vitamins separately.

After 2 months of thiamine HCL, I added allithiamine. I began with 1 pill, 50mgs, and I added another 50 mg pill every week, until I reached 300mg. Initially, all the symptoms I had at the beginning of the disease reappeared: severe myalgic attacks in the leg or abdomen, abdominal pain, other pains and unbearable cold in the whole body, especially in the hands. The chills are so severe that I am often shaking. It is so severe that it paralyzes me. This shaking disappeared in a few weeks, but sensation of being cold still persists. And I am still very tired.

After Six Months of Thiamine Therapy

There are some improvements from since I started with allithiamine. For example, my fatigue has improved. Although I always have chronic fatigue, there are times when I feel better for a few hours. Before starting the thiamine, I had frequent attacks of voracious hunger during which I never felt full. I’ve always tried to ignore them, because if I’m not on a strict diet, I am gaining weight. Since taking thiamine, this happens much more rarely and my sense of fullness has improved. Finally, I have fewer nervous attacks. My digestive system seems to be little better. What I am currently taking:

  • Allithiamine – 300mg
  • Riboflavin – 320mg
  • Niacin – 100mg
  • Pantothenic acid – 200mg
  • Pyridoxine – 20mg
  • Myo inositol – 2gr
  • Biotin – 5000mcg,
  • B12 – until a few months ago. It was low and now it is high.
  • Zinc – 30mg
  • Copper – 2mg
  • Omega 3
  • Inulin – 2gr
  • Keppra – 250mg x2 a day
  • Molybdenum – 200mcg
  • Seleniomethionine – 200mcg
  • NAC – 1200mg
  • Magnesium malate – 1800mg
  • Magnesium citrate – 1500mg
  • Vit C – 2gr x5 a day
  • Lysin 1gr
  • Vit D – 10000 UI
  • M2MK7 – 100mcg
  • DHEA – 50mg
  • Maca powder – 5gr
  • CoQ10 – 100mg
  • LDN therapy – since March 2020

I still have the symptoms of the paradox effect. It has been almost 6 months since I started thiamine, how is it possible? The worst symptoms now are fatigue, frozen hands, shivering. Is the thiamine not working or is something else going on? Could it be that the thiamine revealed some other deficiency that is causing me this reaction? I’d like to know whether I should continue to take it.

A warm hug from Italy.

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14 Comments

  1. Too many cooks may be spoiling the broth. Get rid of all the supplements except thiamine. Escalate the dose slowly to find the “right dose” and add add 125-250 mg magnesium taurate and a multivitamin

    • thank you for your suggestion
      The problem is that if I don’t take the other supplements I don’t tolerate allithiamine. I think I have problems with the methylation cycle and with the production of GSH.
      I also believe that before starting all the other B vitamins I was very deficient in all of them.
      I have a heterozycotic mutation in the MTHFR C667T gene
      I am very worried, it has been two months since I wrote this post and 9 months since I started thiamine and I don’t seem to see great benefits despite many of my symptoms seem to coincide with those of thiamine deficiency.
      I’m in the dark, I sincerely hope to find a solution for my problems because this way I just can’t live

  2. I have no doubt that Silvi is suffering a severe loss of brain energy from a genetically determined cause. The slight improvement from thiamine suggests that the only possible restoration of health is by using thiamine in epigenetic doses. Please survey the many posts on Hormones Matter on this subject and in particular look for the post by Overton whose use of thiamine in megadoses in the UK is spectacular.

    • Hi dear Lonsdale
      thank you for your reply
      I’m working a lot on thiamine dosage and all the other cofactors, since I wrote the story I have already gone up to 400mg. My symptoms are like a roller coaster. I’m fine, a little bad, then very badly, then a little better.
      I feel that Allithiamine is my way but it is as if something is missing.
      I have read a lot of articles on your site and I have read most of the book you have written.
      I’ve seen all of Elliot’s videos and read all of Elliot’s articles.
      I emailed elliot begging him to see me as a patient but he said he is too full now and he can’t.
      Dr. Lonsdale, I thank you and Dr. Marrs, your work is immense, and your help represents a hope of recovery for me.
      a warm hug

  3. addendum to reply i left earlier–
    Potasium should be gotten from food–wide range of foods contain it–supplements can be harmful if too much at one time, or over time–especially to heart. Best to get it from foods, but since in the usa the figure for those deficient is around 95% of people, if do need to supplement, take in small doses thru the day–can be sprinkled on food like salt is, can be added to black coffee for a different taste, etc

    Also, you need salt in diet –best to use unrefined salt like Real Salt, or a sea salt from reputable company the checks for contaminants.

    important to get salt, potassium, calcium, and magnesium into diet–affects whole body of course, nerves, bones, etc etc

    Iodine is also of importance in whole body; temperature regulation is one of functions it helps with–you do not mention taking any iodine–(some seaweeds, or take supplement–Logol’s solution good.

    • Thanks for the comment
      Thanks for the advice on magnesium, @chandler also told me it is too high, in fact now I have lowered it.
      I forgot to put calcium in the list of medicines I take because it is in a multimineral that contains in particular:
      600 mg of calcium
      2 mg of manganese
      5 mg of iron
      1 mg of copper
      1 mg of boron
      40 mcg chromium
      75 mcg of iodine

      I also take 1500mg of potassium bicarbonate (which contains a low percentage of potassium).
      I use himalayan pink salt, from 2016 to 2018 I ate completely without salt, because I thought it was bad for me, instead I had an incredible need … now I feel that I really need it, especially since I started the thiamin
      For iodine I try to take it with fish
      thank you very much

      • Pink salt is full of harmful heavy metal and fluoride, which is the most electronegative molecule on the planet and it gets where it doesn’t belong and it will hang on tight. Iodized table salt is simply one of the best products for preventing goiter and goiter was always worse in geographical regions that have the pink salt.

        Iron supplementation can cause a gut microbiome shift. Iron and manganese are two of the most important minerals for microbial pathogens and the body goes to great lengths to sequester them and I just think it is way better to get these from food.

        I’ve been looking at boron and I think it is way more important than we realize and it is very low in food today then the past because of fertilizer use which seems to prevent its absorption into plants. I think 3 mg of boron is better than 1 mg.

  4. your magnesium supplemental amount is very high–your macro minerals could be out of synch–we need 4700 mg of Potassium per day, and usually only about 400-500 mg of magnesium–don’t know your calcium intake, so can’t comment on that.
    too low potassium could bring on a number of your symptoms, the coldness, the fatigue, weight gain….it slows the brain and all body nerve signals and actions
    potassium citrate powder is good to use.

    also, prebiotics and fermented foods (miso, saurkraut etc) super important re feeding the microbiome that we need in order to live. With your history of the various parasites etc, and the medical treatments, you are in great need of replanting your gut.

  5. I cannot see folinic acid on your list.
    Alpha lipoid acid might help, to increase reduced glutathione. (Glutamine, cysteine and Glycine are needed all) (I have noticed it helps in my case , when I get cold hands and feet’s) and if you have still disautonomia, low digestive energy and low protein could be the case. Chew as much as a cow in total , and don’t drink together with meals.
    Or fill up minerals, vitamins and aminos I.v., for example in Germany, Dr. Katrin Bieber, office1@milz-bieber.de, she speaks english too,
    About eating many apples, I suggest to check the videos from dr. Robert Lustig: Sugar, the bitter truth & Fructose 2.0

    Good recovery, to better than ever

    Saluti della Svizzera

    • Hi Benjamin
      First, Thank you for reply
      In summer 2020 i took activated folic acid (MTHF) and it worked for some time, after three months of benefits i noticed it started hurting me
      Glutamine, cysteine and Glycine, they seem interesting additions, how should they be taken?
      I try to eat slowly and do not drink during lunch, thanks for the advice, now I will also see the videos of Robert Lustig
      Eine Umarmung aus Italien 🙂

      • Methylfolate depletes potassium for me in a big way and produced the better then worse pattern for me until I started supplementing a substantial amount.

        • how much MTHF did you take and how much potassium (and in what form, citrate, carbonate?)?
          Thanks for the info

  6. Hi mara, thank you very much for your comment, it is important to me.
    As for the LDN I was thinking of gradually decreasing it, now I am 4mg / day.
    Yes, I take potassium and calcium but I forgot to write them down because they are present in a multimineral.
    woow you take a lot of thiamine, I would like to gradually increase it … I am terrified that I have been taking it since November and I am still very tired, unable to study, read or do anything else.
    I’m confident, maybe I still have to fix other deficiencies, or maybe I just need to increase the dose … we’ll see
    Thanks mara

  7. Hi there,

    I’ve dealt with similar issues for my entire life, although for slightly different reasons.
    I looked at what you take and noticed that you are also on LDN.

    I tried LDN starting with August 2020 until November 2020. What I noticed was that if previously LDN helped me sleep, and thus I felt somewhat better on it, after starting allithiamine + vitamins + minerals in October, it started giving me insomnia and feeling jittery overall. So I had to give it up, which I don’t regret. I was on 4.5 mg/day.

    I’m on a very similar regimen to yours now, but I don’t take Maca powder, Lysine and NAC:

    300 mg Allithiamine from Ecological Formulas (B1)
    150 mg Riboflavine (B2)
    200 mg Niacindamide/Nicotinamide (B3)
    1 capsule of Active B Complex (methylated B vitamins, such as the one offered by Thorne Research; I take something else, not from Thorne Research), sometimes 2 capsules;
    300 mg Magnesium (malate) + 500-600 mg Calcium citrate
    200 mg Potassium citrate
    1 multi mineral/ multivitamin capsule (such as the one from Thorne Research for pregnant women)

    I take the above supplements 4 times a day now and the results are great. (I also published my story on this website last week)

    Do you take methylated B vitamins? When I added them, 2 weeks after starting allithiamine, they made a big difference.
    I also don’t see potassium or calcium on your list of supplements. Potassium is essential for not feeling jittery.
    Pyridoxine 20 mg might be a bit too much, since it’s the non-methylated form of B6.

    I think it would be a good idea to do a full vitamin and mineral check-up and see if there’s anything you might miss and not know about. In Germany, where I live, there are vitamin and mineral panels that you can do privately in labs and they don’t cost that much.

    Mara

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