Lyme, who to belive? | (Now a kind of Lyme Diary)

Hi Noxon
we get quite a few people here commenting they have been on abx for a few months but are not seeing major improvements and therefore assume something must be wrong. This is natural as w all hope for a rapid recovery.

however - if we look at the protocols the most respected LLMD's use - and papers on the topic we see that typical treatment durations for Lyme and associated infections are around 2 years - longer if there are complications - and often little improvement is seen in the initial months - where herx type reactions are often strongest and can offset or obscure any gains that are being made.

i know this is not always what people want to hear - and some may have built up an expectation in their mind that a couple of months of treatment and they should feel much better.
often we almost need to hold these beliefs to feel able to cope.

but these diseases have often taken years to establish themselves and recovery is often slow - and in the initial months the patient will often be more reactive as microbes are killed and the immune system has to clean up after them with inevitable symptoms increases

the fact that some of your symptoms have improved or resolved is a positive sign and a clue you are moving in the right direction

keep up the good work!

I agree with Garzie & WalkingbyFaith in that a lot of your symptoms sound like you have Babesia.

keep up the good work Noxon - often progress with this disease is slow when of course we all want it to be fast - but if you are doing all the right things - then progress can be continuing under the surface and other people notice it more than we do ourselves - because we can become a bit lost in our daily suffering and find it hard to subjectively measure how we are doing. This is very common in depression also.

don't entertain the feelings of doom - its common but just a symptoms of an inflamed upset brain that isn't working normally - so do not let it govern your decision making - focus on the light - the things you can do - the possibility of getting your life back - and just dig deep and press on.

all the best!

This forum is not nearly as popular as it used to be. In the past, I would say there was a lot of people that have been in your shoes and they eventually got better, it certainly took a long time for some of them.

In my case, the day that I woke up 80% blind, I figured I was gonna die soon. I lived in my eyesight improved quite quickly. Apparently maybe just a guess, There was some bacteria in my optic nerve? Who knows, the time has passed.

I had some great accomplishments In my sport, and my career, in my 20s which soon came to an abrupt halt because of my illness. I push myself to major extremes in order to get to some milestones (dreams thst I wanted to achieve). All the time while my health was getting worse. I want to go further, I was not able to.

On good days I’m 90% better. Right now I would say it’s drop back down to about 75%. I adjusted to simpler life a little more boring, and less money but less stress. That was what I had to do, and that remains the same today. What I did to make up for the money was it started my own side gig, which is on my time I am my own manager.

Hi Garzie and Astroman, thank you for your answers.

That's not wrong, I indeed already went through steps which were even harder in the past, but this was before I started the treatment (when I didn't even know I had Lyme yet). I’ve already had psychiatric follow-up last year during three months yes, but the psychiatrist didn’t know what to do. As the reason is a physical disease and I didn't have depression or so.

But now I'm trying to cure it, unfortunately, I go back slowly and the symptoms are very different.

The most annoying part is probably these occasional violent discomfort I didn't manage to solve yet. My blood tests are fine, and my glycemia seems fine too (though I have not yet had the opportunity to test it during a malaise), and this other syndrom I describe here:

Noxon said...
At times my field of vision narrows, I feel lost and confused, I get dizzy all of a sudden... it really does feel like I'm going to pass out on the spot.

It becomes really creepy. It now happens every time I'm standing. Basically if I'm sitting or lying it's okay but as soon as I walk or stand still, or do a little effort, it eventually happens after some time. It's really hard to describe. That really sounds like the brain isn't working correctly at this moment.
It is like the second when you just wake up in the middle of the night and your brain isn't fully activated yet, you don't know where you are, you have visual disturbance, you fill dizzy, and you're about to fall asleep back. It makes you feel like you're not alive, like half-conscious.

I really wish this syndrome would go away as it is clearly the most terrifying and annoying one I had until here through the disease... Moreover it is very dangerous, if it happens while I drive, I can clearly make an accident.

That does sound like POTS, pretty much exactly.

POTS is as pinkblossom described, and can also include a drop in blood pressure upon standing (when it should rise).

There are lots of ways to treat it, and it's not dangerous to your body aside from the inherent danger of fainting. It's a nervous system issue, so it's a type of dysautonomia, and most dysautonomia specialists are neurologists, though a few are cardiologists. Be aware that there are very few dysautonomia specialists and they tend to have very long waiting lists.

How to self-diagnose, if you can't find a specialist: Use a pulse oximeter and blood pressure cuff to measure your heart rate and blood pressure while lying down, sitting up, and standing up. Technically you should be in position for ten minutes before taking the reading. If your blood pressure decreases when you sit or stand OR if your heart rate rises 25 beats per minute or more, then you have POTS. Some go through the trouble to test with a tilt table, but that's not actually necessary. The definition is simple.

More physicians are becoming familiar with POTS because it's a common feature of long COVID, but it's also common with CFS/ME and Lyme.

Some treatment options:
- Florinef, midodrine, and other drugs (all about as effective as placebo, so they can be effective, just are not a slam dunk)
- High salt intake
- Proper hydration (not too much or too little, but never becoming dehydrated, e.g. keep water and salt by your bed and drink some at night if you can)
- Licorice and other supplements that can raise blood pressure
- Recumbent yoga to keep circulation and strength going
- Limbic system retraining programs (DNRS, Primal Trust, Gupta)
- Addressing mast cell issues (if applicable) and overall inflammation
- Compression garments on the lower half of the body

I agree blazer! Noxom you describe feeling afraid, fear, feeling scared, being terrified, feeling creepy, alarm bells, you fear something more sinister is going on, you fear you have heart problems, impending doom, fearing that you are at the end of your life, writing a will.

It’s surprising to me that the psychologist didn’t know what to do… because yes it doesn’t sound like depression but I would have thought if you went to them describing these symptoms then they would have diagnosed you with some kind of panic or anxiety disorder. To me this is text book anxiety / panic related to your health issues.

How do you know it’s the disease itself causing this and it’s not a psychological fear because of what you are going through which you describe as ‘frequent violent discomfort’? Having all these symptoms is very scary. I ask because there is no way to know that it is the disease causing the fear.

So you could approach your GP who could prescribe medication and also seek help in forms of therapy or see a psychiatrist who would be more specialised in this area than a GP. Best of luck!

Edit - Btw I’m not saying I don’t think you have Lyme. I read back to your original messages and you say yourself you experience severe panic and anxiety. So there might be things that are able to help with this aside from treating Lyme.

Post Edited (pinkblossom) : 5/14/2024 8:01:18 AM (GMT-8)

Hi, thank y'all for your answer. It is so kind to get support.

I understand that it's difficult to differentiate and I've struggled for 4 long years against this kind of shortcut.
I was first diagnosed with anxiety depression, when I had absolutely no reason to be. I have everything to be happy around me apart from my health.
My job isn't stressful because I'm independent, I have a girlfriend, a dog, a family, friends, and lots of passions that don't require physical effort (code/development in particular).

I've eaten drugs, low and then higher dose antidepressants, sometimes mixed with hazardous medications and psychotropic drugs prescribed by the doctors.
The symptoms are indeed highly exacerbated by anxiety. At first, I didn't know what was happening to me, so I shut myself up in a kind of torpor. And that was catastrophic.
Antidepressants helped me through this difficult stage, between 2019 and 2020. But even after I got off them, the psychological symptoms persisted in fits and starts, and the physical symptoms even changed significantly.
This prompted me to investigate my condition, until I tested positive for Lyme.

I've seen a few testimonials on other sites, of people in a similar state.
Lyme is capable of penetrating brain cells and causing disabling symptoms, such as psychomotor slowing, depersonalization, derealization, confusion...
This is exactly what affects me on a daily basis, with varying degrees of frequency.
Some Lyme sufferers talk of having been subject to bipolar disorders or dementia, psychiatric problems that have resolved over the years and with Lyme treatment.

The problem is that my relapses seem to be getting more and more violent, whereas I should, on the contrary, be getting better now that I'm on treatment. And that's without taking into account all the physical symptoms that accompany them, as I said earlier, along with the trouble with the slightest exertion.

I have indeed tried to take my blood pressure, but unfortunately I can only take it on my arms.
I did it under the conditions described, after a minimum of 10 minutes or more of activity (cleaning or walking the dog). But it's always good results, from 115 to 135 mmHg sys. and 85 to 90 mmHg dia., even when I'm on the verge of losing consciousness.
So I don't think it's POTS or PEM, or if it is, the problem is localized in an area I can't test (neck veins, for example).

To answer saraeli, I think it was a mistake when you said 25 BPM and you meant 125 BPM. But the heart doesn't go that high, I'm usually between 70 (rest) and 110 (basic post-exertion, like vacuuming).

I've also noticed that common illnesses exacerbate the symptoms enormously. For example, nasopharyngitis or indigestion will put me in a catastrophic state.
I'll spend three days in bed with extraordinary physical and mental symptoms.
So it's possible that I'm suffering from something right now too... Between the cold and the heat that's altering the month of May.

PEM doesn't mean that your BP crashes. It Just means you feel horrible after exertion for an somewhat extended Time period and Not jusz minutes.

hi Noxon

most of us have all standard blood tests in the normal range most of the time

mine were all typically normal - even when i was at my sickest

occasionally a single marker would be on the limit of the normal range - but never anything serious enough for a conventional medicine doctor to consider it a problem

they are simply not the right tests to detect problems from chronic infectious diseases

if you are still concerned about blood sugar levels - you can buy relatively inexpensive blood glucose monitors not a lot of money - i think i bought a good named brand one on ebay for around £20.

i doubt that's the cause of your issues - as most of us with these illnesses have recurring bouts of malaise and fatigue without severe blood glucose variations - but it would be a small price to pay to set your mind at rest

i hope its of some help

all the best