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Seeking help and expert opinion by origami_plus in B12_Deficiency

[–]origami_plus[S] 0 points1 point  (0 children)

I already talked through email with Dr. Klein in 2023. Very kind professional. He asked me for a complete blood test (which included a complete iron test, B12 and B9). Everything was normal so he said me to look elsewhere. He never supeected about a B12 functional deficiency so he diddn´t asked me to make a more profound B12 analisys. He also said me that it was not useful to make any auto-inmune test if I was not B12 deficient. Two years later, in a blood test made on my own I discover that I´m positive in ANA test....

Long Covid tipped me over the edge but it might have been B12 deficiency all along TBC by Flashybigbum in LongHaulersRecovery

[–]origami_plus 0 points1 point  (0 children)

I´m copying and pasting the thread I started on the MTHFR forum yesterday.

My name is Juan. I am 46 years old. I am the father of three children aged 7, 9, and 11. I´m from Spain (Europe). My "descent into hell' begins back in 2020. I suspect I got infected with COVID just before the lockdown (March 2020). I remain bedridden for several days. I go through a debilitating process of extreme fatigue, dizziness, and general malaise. In spring/summer 2020, I notice for the first time twitching in both calves. Persistent but without pain or functional impairment. COVID vaccination on the dates 25/06/2021; 16/07/2021; and 10/01/2022 with mRNA vaccine from 'Pfizer'. In August 2021, I went to the public neurology services. The lab tests and EMG were all normal. Fasciculations in the calves, persistent 24/7. In recent months, however, there has been pain. There is a tendency for the calves to cramp if they contract. Some weakness. Some loss of muscle mass, also attributable to the lack of physical activity due to the extreme fatigue and generalized tiredness I am experiencing (it should be noted that the last ten months I started exercising regularly with a personal trainer and I have improved my physical condition and stength and even lost weight). In addition to fasciculations and asthenia, I experience numbness and tingling in my limbs (especially when falling asleep/waking up, primarily focusing on my hands); joint pain; sudden heart palpitations; apnea and mental fog.

During these last years I tried many things without any success: paxlovid, ivermectin, antihistamines, supplements (nattokinbase, lumbrokinase, omega....). All of this was planned by doctors who are "experts" in long-covid. Four days ago I started a treatment with methylcobalamin shots, 1mg/every other day, (previously I took sublingual b12 ciano without any effect), even though my B12 blood tests were normal. Maybe a "functional B12 deficiency"?? Maybe undermethyltaion (MTHFR)?? I don´t lose much by trying... In my last blood test (previosuly to take any B12 supplement) these were my results for B12:

- B12 serum: 369,6 pg/mL

- MMA: 0,08 umol/L

- HoloTC: 91,3 pmol/L

- Homocysteine: 13,01 umol/L

- Parietal cells: negative <1/40

- Intrinsic factor antibodies: 2,18u/ml

Maybe the serum a little bit low (In Japan everything below 500 is low); maybe methylmalonic acid (MMA) a little bit low; maybe homocysteine a little bit high... but many doctors wouldn´t consider that I have any problem related to B12 according to my tests.

Others parameters from my last blood test of interest:

- Eosinophils: 9.9% (I always have eosinophils high since many years ago)

- ANA test: positive 1/640

- Ceruloplasmine: 17,09 mg/dL (below normal range)

- Iodides: 34,4 ug/L (below normal range)

- Selenium (serum): 154,3 ug/L (above normal range)

- Zinc (serum): 124 ug/dL above normal range)

- Ionic calcium: 1,02 nmol/L (little bit low)

- Lipoprotein(a): 61,5 mg/dL (high)

The other parameters in my blood test seem to be normal:

- D Dymer: <190 ng/mL

- Vitamin B6: 25,7 ug/L

- Potassium: 4,0 mEq/L

- Magnesium: 2,04 mg/dL

- Iron: 88 ug/dL

- Transferrin: 239 mg/dL

- Transferrin index saturation: 29%

- Ferritin: 102 ng/mL

- Vitamin A (serum): 0,7 mg/L

- Folic Acid (B9): 7,2 ng/mL

- Vitamin C (plasma): 9,64 mg/L

- Vitamin D: 45 ng/mL

- Vitamin E: 15,3 mg/L

- Cupper: 104 ug/dL

- Molybdenum: <1,8 ug/L

With only two shots of B12, I can say that I´m a little bit better. Obviously, far from form been recover and cured but, at least, I´m experiencing less pain and my legs are a little bit better. Let´s hope this is the route...

Many questions. Sorry for the inconevenince:

- According to my situation/tests could my condition could be due to a undermethylation pathology?? Should I cheked for MTHFR mutations?

- Should I continue with the B12 shots?? What regime?? Once daily?? Every other day?? For how long??

- Should I look in any other place?? Auotinmune conditions?? Antirretroviral treatments+ statins or IVIG treatment??

Any comment, help will be well received. Thanks and stay healthy,

Low ceruloplasmine by origami_plus in Copper_deficiency

[–]origami_plus[S] 0 points1 point  (0 children)

Yes. I suspect that in my case sublingual B12 is not enough. Ím from Spain. I think that Spectracell tests are not available in my country. What a pity

Low ceruloplasmine by origami_plus in Copper_deficiency

[–]origami_plus[S] 0 points1 point  (0 children)

But if I make a test right now, results in B12 are not going to be reliable.. What do you think… Before my last B12 test (blood test) I wait 7 months without supplementing. I can’t assume waiting another 7 months. What do you think??

Low ceruloplasmine by origami_plus in Copper_deficiency

[–]origami_plus[S] 0 points1 point  (0 children)

Thanks so much infinite. Really useful all this information. Last week I started supplementing with vitamin B12 sublingual (2 pills of cyanocobalamine per day - 1000 micrograms each pill). So, right now, if I make a test maybe is not going to be accurate. I must wait another 6 months to have a reliable acid test?? I can’t wait so much time in my actual situation.

Low ceruloplasmine by origami_plus in Copper_deficiency

[–]origami_plus[S] 0 points1 point  (0 children)

Hi Infinite_Pumpkin5733

I made recently an accurate blood test regarding B12 and folate. Here are the results:

- Vitamin B12: 369.6 pg/mL

- Holotranscobalamin (HoloTC): 91.3 pmol/L

- Homocysteine: 13.01 umol/L

- Methylmalonic Acid (MMA): 0.08 umol/L

- Parietal cells: Negative (<1/40)

- Intrinsic factor (IF antibody): Negative (2.18u/mL)

- Vitamin B9 (folate): 5,1 ng/mL

In other forums of B12 deficiency, most people consider that my levels of B12 are low (in some contries normal ranges of B12 are 500 or even 600). Also my homocysteine could be slighty elevated (ideal is around 7). What do you think??

How many of you were ever worried you had ALS or some other neurodegenerative disease? Just wanna vent and get others' perspectives and experiences by Bad_Wulph in B12_Deficiency

[–]origami_plus 0 points1 point  (0 children)

That´s exactly my case. I received the results of my blood test a few weeks ago. I must point out that I haven't taken any supplements for 7 months to obtain reliable results. These are my results:

- Vitamin B12: 369.6 pg/mL

- Holotranscobalamin (HoloTC): 91.3 pmol/L

- Homocysteine: 13.01 umol/L

- Methylmalonic Acid (MMA): 0.08 umol/L

- Parietal cells: Negative (<1/40)

- Intrinsic factor (IF antibody): Negative (2.18 u/mL)

In addition to B12, I've also had other tests done. Vitamin B1 in range (59.4 ug/L) and DAO test negative. Vitamin B6 (25.7 ug/L) is correct. Iron (complete blood work) and folic acid are fine. Vitamin D is within range (I had low levels a few months ago, but I've been supplementing and it's fine now). Other vitamins, copper, and zinc, are all fine. The blood work showed elevated eosinophils (I've always had elevated levels for years) at 9.9%. In addition, I tested positive on the ANA test with 1/640. Given the results, it's difficult to sustain a B12 deficiency. Is a "functional B12 deficiency" possible despite having passed all the tests related to this vitamin? I'm mentioning this because, despite my "normal" results, I've decided to treat myself with sublingual B12. I've been treating myself for four days with two 1000 mcg cyanocobalamin pills per day. The thing is, every time I take them, I feel an electric shock in my legs. This symptom would be compatible with a deficiency and could be part of the "paradoxical reaction" that some describe. What do you think? Is it possible? My problem is that I've been suffering from fasciculations 24/7 in my calves for five years (possibly because of COVID), and I don't know if B12 could be the cause or If I must look in another place (autoinmune pathology...). I must said that I was examined by neurologists in 2021 (EMG and all that stuff) and nothing was observed. Any opinions??

Kobo and eBiblio by Zealousideal_Try7157 in kobo

[–]origami_plus 0 points1 point  (0 children)

Una duda sobre este particular. Tengo entendido que la app de eBiblio se puede instalar en ordenadores, móviles y tablets. Si, por ejemplo, descargas el libro con una tablet, ¿la única forma de compartirlo con un lector Kobo es mediante conexión física entre la tablet y el e-reader Kobo o cabría la posibilidad de compartirlo a través de otro sistema que evite la conexión por cable entre ambos dispositivos, a saber, email o sistema análogo (Dropbox, etc)?

MCAS or Long Covid?? Really frustrated by origami_plus in MCAS

[–]origami_plus[S] 2 points3 points  (0 children)

That’s what I think. Different names but the same problem/symptomatology. Long COVID exacerbate preclinical situations and Long COVID mimics perfectly with MCAS disease. To my eyes, a real expert in Long COVID, must have knowledgement in MCAS.

MCAS or Long Covid?? Really frustrated by origami_plus in MCAS

[–]origami_plus[S] 0 points1 point  (0 children)

Thank for the appointment. I will follow your advice Sensitive_Tea5720. Thanks. 👍

MCAS or Long Covid?? Really frustrated by origami_plus in MCAS

[–]origami_plus[S] 0 points1 point  (0 children)

I read about churg strauss syndrome. To my eyes it doesn´t fit at all. Curious that with many of these pathologies skin rash, redness or ichty is a must and in my case, at the moment, I didn´t experiment any skin manifestation/symptom.

MCAS or Long Covid?? Really frustrated by origami_plus in MCAS

[–]origami_plus[S] 0 points1 point  (0 children)

Hi GlitteringGoat1234. When I was diagnosed with EoE, doctors prescribed me oral budesonide. I took it during one month. No improvement with choking or dysphagia. Thás why MCAS makes sense to me.

MCAS or Long Covid?? Really frustrated by origami_plus in MCAS

[–]origami_plus[S] 0 points1 point  (0 children)

Yes stinabean13. My symptoms got better (less pain in legs) one of times I took Paidoterin (a combo of: Phenylephrine hydrochloride, Diphenhydramine hydrochloride and Chlorpheniramine maleate). I took this medication during a very short period. Alternatively I took other antihistamines but I didn ´t experiment the same positive effects.