Dear Dr. Kumar,
Thank you for your response. My suspicion is that the flu shot has caused extensive damage somehow in my body and I want to find out exactly what happened. I understand you don’t know me or my medical history and have not examined me, so there is only so much you can recommend, but I would like your ideas on what the flu shot could have done to me and how I can find out. I’m sure you deal with neurotoxic effects all the time in your practice. I do think a neurological examination is perhaps necessary for evaluating the damage, but let me give you a brief description of my medical history. Before the flu shot I had no issues or diseases of any kind other than the hypothyroidism, which I’ve had for 4 decades and has been well-controlled by levothyroxine. I was healthy, happy, athletic and full of life, looking forward to a rewarding retirement. I did a lot of hiking, jogging and working out at the gym (BMI of 19.5). I slept well and enjoyed quiet evenings and being out in nature. I co-own a vacation house in the desert that is my joy. (I was outside a lot in the southern California desert in short sleeves and shorts so I really doubt I have a vitamin D deficiency!) That was two weeks ago. I hardly remember the person I was then. I’m shaking all the time (not badly, more like internal tremors and chill-like sensations, but never had any fever) and the loud ringing in my ears never stops. I have no appetite and no desire to do anything because I feel so horrible. I can’t sleep anymore. I just want to know what happened and if there’s any hope. This is not the kind of life I am willing to live.
Since I didn’t have symptoms of any kind before the shot, I presume the implication is that you think the shot might have caused vitamin deficiencies and brain damage. I have already sent a message to my doctor asking her if she can prescribe me anything for the tremors. I will ask her about the beta blockers you suggest. I have reviewed again the results of my extensive medical tests and the only things marked “abnormal” are traces of ketones and RBC in my urine. I don’t know how that compares to before the flu shot since I’ve never had a urinalysis before.
Thank you

I mentioned demyelination to my doctor and she said since I don’t have “tingling” she doesn’t believe I have that condition and does not recommend an MRI “at this time.” However, my symptoms are getting worse and I don’t know how to describe them since I haven’t experienced anything like them before. I have body waves of “chills, tremors and weakness” continuously now. The sensations never stop and I can no longer sleep more than a few hours a night because I can’t lie down. The chills aren’t like fever chills or cold chills – they are different, but more like cold chills with no shivering that start from my legs and go through my whole body, up my back and into my neck and head. The tremors aren’t something you can see like in Parkinson’s but just feel like internal tremors along with the chills. If I stretch out my arm or leg it looks steady. The weakness is very much like the weakness one feels when coming down with a virus. It’s all over my body: my arms and legs and especially my midrange (mainly my back). Being active somewhat masks the sensations but never gets rid of them. They used to be somewhat intermittent but now I have them all the time. I looked up beta-blockers and my blood pressure has always been low (though it’s getting higher: 117/72 ten days ago) so I’m sure my doctor wouldn’t give me beta blockers. She did consent to increasing the levothyroxine from 75 to 88 mcg per day.
Now my doctor wants me to go to audiology but that’s ridiculous! At first she said she thought I might have pneumonia and/or a urinary tract infection (no symptoms of either except the chills – and no fever) plus an acoustic neuroma in each ear, all of which developed 9 hours after the flu shot, although I had never had any indication of any of those ailments before the shot (or even after, in my opinion, except the chills & tinnitus). Doctors think patients are stupid but one would have to be beyond stupid to believe such a silly proposition – it’s ridiculous! What you and she need to understand is that (1) both symptoms (chills & tinnitus) developed only after the flu shot and I felt absolutely great before the shot, and (2) the symptoms are related – they are springing from the same source. According to the internet, acoustic neuromas grow slowly and are not associated with waves of chills, tremors and weakness. I want to know exactly what this flu shot did to my body and how!! If I knew that maybe there would be some way to treat it. I have heard that an antibiotic, gentamicin, used in flu shots could be neurotoxic. Do you have any experience with side effects from this drug? I have never taken this drug. Do you think the flu shot could have been contaminated with something?

I’m not sure my doctor is unsympathetic but I think she’s in over her head and in my opinion is not behaving logically. Our “healthcare system” has a doctor/patient online email communication set up for short notes that I was using every day with her and in my last communication I told her I would report back “in a week”, which is next Thursday. At that time I am going to ask her if she would refer me to a neurologist, perhaps for some of the tests you suggest.
First, I want to discuss my doctor briefly and then ask your opinion of my latest “self-diagnosis.” I guess I am somewhat angry with her partly because of my personality. I am a trained physicist and have a logical, scientific mind. In other words, I think and reason like a scientist and believe in cause and effect and logic. I’m also a “can-do” person and want to understand what’s going on in my body because I’m suffering and my life has been severely affected. It’s very obvious to me that the cause was the flu shot and I’m trying to understand the physiology of the effect. When she sends me for an X-ray for pneumonia and for a urinalysis for bladder infection when I have absolutely no symptoms of either except “chills” (which aren’t really chills as we normally experience them but “paresthesia”) I get angry with her even though I know where she’s coming from. These tests are to cover her back and to “rule out all possibilities” but are not the least bit logical! I’ve had walking pneumonia in the past and cystitis about 4 decades ago. With both ailments I really knew I had them – 101F fever, severe congestion and malaise with pneumonia; cloudy urine, “urge to go” all the time and mild pain with cystitis. I had none of these symptoms or paresthesia before the flu shot and only paresthesia (plus tinnitus) after. In addition to those two tests she ordered a whole slew of other tests. Blood cultures?? (Negative, of course.) Audiology for acoustic neuromas?? (I’ve refused to go so far as I have not the least bit of hearing loss.) Since the health-system emails are limited to short messages, I wrote her a detailed letter (at 2 AM in total despair) describing my symptoms and the effect they have had on my life. (She has already examined me clinically.) Instead of suggesting any medication to soothe the paresthesia so I could sleep (though she has not suggested that’s what it is) she wrote back on the email saying “I’m praying for your swift recovery.” As I’m not the least bit religious she can pray all she wants but I doubt it will help. I have asked her several times to help me with something for the paresthesia but all she has offered so far is prayer.
On to my latest “self-diagnosis”. Please tell me if you think it’s reasonable or not. First of all, as of early this morning I started having what could be described as tingling sensations in my right fingers and right foot. The tingling in my fingers came on just before I got up this morning and lasted only a few minutes. The “tingling” in my right foot is more like very intense chills – though it could be described as “almost” pins and needles - and is ongoing. So here’s what I’m thinking: for the past 3 years I’ve had a flu shot with no adverse effects. However, I turned 65 right before the present shot. I have since learned that at age 65 the health department changes the dose from the regular dose to the high-dose shot (without asking). So this year I got a flu shot with 4 times amount of dead virus as in the previous years.
I was exceedingly healthy and fit and I think the high dose of virus caused a massive immune reaction in my body. (I first noticed the symptoms 9 hours after the flu shot when I awoke from sleep, though of course I was asleep some of that time so who knows exactly when they started?) I think the massive immune reaction started attacking my nervous system as in an autoimmune disease and could have caused the demyelination you suggest or other nervous system or somatic problems associated with autoimmune disease. That’s my theory.
Is demyelination always permanent? If that’s the issue, is there any hope for partial recovery?