Do Your Symptoms Take on a Pattern When Feeling Worse?

Yes definitely and great post running wild!

For me this is a cluster:

- Fatigue
- Knees giving out under me
- Inability to tolerate even the mildest form of stress (ie. just having a todo list is too much)
- Eyes rolling back up (this has finally stopped the last year or so)

And yes now that I think of it, the frequent urination gets even worse sometimes too.

Hi running wild!,

Yes!!! That's literally the best way to describe it, the knees giving out but then you find out you still have strength! In fact, only once in all these years did I collapse in a parking lot because of it. All the other times I can bring myself to keep standing.

about the eyes, I'm sorry I never found a great way to describe it. You know like in horror movies when you see someones eyes go all the way up so that there is only white left? Like they roll back into your skull? It's like that. It's super creepy and I think it's because the infection have weakened the nerves around my eyes. I'm so grateful that it stopped this last year.

Yeah they happen all within a few days, sometimes even within the same day.

I totally understand not wanting to sleep when you feel like you have these unexplained symptoms. In regards to the numbness I don't know if this helps you but thought I'd share:

https://danielcameronmd.com/atypical-symptoms-of-lyme-disease-numbness-paresthesias-and-abdominal-wall-weakness/

I don't like the word "atypical" in this article because that implies the rest of Lyme isn't atypical, which it is. What I mean is that Lyme is so different in everyone that basically the entire illness is atypical.

I had numbness too, especially when waking up and falling asleep.

Hope you feel a bit better today.

Rainy - The "giving out" of legs, knees, etc.. was my biggest symptom many years ago, as mentioned. It went away, until recently. Now I understand it is part of the process, but I worry about if it is autoimmune related, Lyme or kidneys. Easy to get into one's own head.

The eye problem does sound like nerves would be involved. Were you also very nervous during that time because of he symptoms? That seems to make things worse. Can't remember if you have Bart.

Donjr - You asked about blood pressure but mentioned Rainy. Not sure if that was asked because of what I posted, but if so, blood pressure problems have been a big one for me for years. I am on an Ace inhibitor because it also protects kidneys, and also take verapamil, a calcium channel blocker. But when I go into the pattern mentioned, it seems nothing will bring the BP as low as when I'm not feeling bad.

In my case, I believe it is bartonella causing it. Had a positive through Igenex on that and tick born replapsing fever. Negative on Babs and no sweats. If you don't mind me asking, how high does your BP go? One thing I found out through all this is some BP meds can actually raise mine. And one time in the emergency room they gave me an IV of Hydralazine that caused the BP to sky rocket and I was shaking uncontrollably. The nurse said I had anxiety, and I just looked at her and said "I didn't have anxiety before you put that sh-- in me, so don't tell me it's anxiety."

So treatment causes your BP to rise?

Went through that for about 5 years. Was placed on all kinds of different psych meds in an attempt to try and keep my marriage and kids. But I wouldn't agree with them it was "all in my head," and would always say I know my body and something is wrong. That would lead to more diagnosis of hypochondria.

There is no way to know how many Lyme tests were done that showed Lyme but not CDC positive that were dismissed. At that time, though, I had no clue about Lyme and how weak the CDC is with it.

It has been the last few years I have noticed clusters of symptoms instead of individual. Maybe that is common amongst Lymers.

Oops I missed part of your question running wild, yes when I worry/stress the eye rolling got worse. Seems like you and I have a lot in common.

Thank you so much Garzie! I found it in the video indeed, it's so great to hear that:


" or knees buckling sometimes
the point of people falling down oops
and then getting up you know"

[....]

"i started noticing patterns with that a
long time ago with Bartonellosis and i do
think that that's a very specific
feature of Bartonellosis"

Starts at 30 minutes and 2 seconds into the video for those interested.

I actually have the book Chronic, and I just looked and noticed it's in there too.

I put the part in bold:

"Bartonella (Cat Scratch Disease, Trench Fever, and Carrión’s Disease)

At least forty different species of Bartonella bacteria have been documented, more than twenty of which have been found to infect humans, causing bartonellosis. Bartonella species have been infecting humans for a very long time. Bartonella quintana DNA was demonstrated in a 4,000-year-old human tooth. Bartonella are mainly transmitted by ticks, fleas, lice, and biting flies, but transmission after ant and spider bites has been published in case reports as well.27 Bartonella can cause a huge array of chronic illnesses, including neurologic conditions such as migraines and seizures, as well as rheumatic illnesses. Sudden onset of serious psychiatric conditions, including schizophrenia, can be caused by Bartonella infection, and its resolution with appropriate antimicrobial therapy has been published.28 Bartonella is inherently antibiotic-resistant, can be difficult to treat, and Herxheimer reactions occur. Symptoms and signs of a Bartonella infection in my (Dr. Phillips’) experience include depersonalization (loss of sense of identity), muscle or tendon pain with motion, fevers, back/sacroiliac/sternum/coccyx pain, large muscle jerking, breakaway weakness (where a muscle will just give out and then it’s fine again), and a worsening of symptoms in the late afternoons into the evening. Signs that can be seen with Bartonella but also can be seen with other illnesses include chronically low white blood cell count, high C-reactive protein (CRP), hemolytic anemia (rapid destruction of red blood cells, causing anemia), and an enlarged spleen. Examples of other illnesses that must be ruled out in such cases include babesiosis (caused by Babesia parasites) and cancers of the blood, among other things.

More later in the book:

"Intermittent muscle weakness, a.k.a. breakaway or giveaway weakness, which is rapid-onset, rapid-resolution weakness that produces a shakiness or buckling of legs and dropping things from hands"

Great posts. Tells a lot of good information.

The description of "intermittent muscle weakness" is a much better description of what I dealt with and have been again lately. My legs simply feel weak and like they are about to go out, but the strength is always there. There does seem to be more stiffness when they feel like that. Based on the other causes you posted, Rainy, it seems mine must be Bartonella. My mind always takes me elsewhere simply because I let it. Kidneys and autoimmune are always in my thoughts.

Do you ever feel the weakness feeling as well, Rainy? And neuropathy of any type?

running wild: I got most of those symptoms, but they didn't cluster together.

The itchy eyes for me was almost exclusively coronavirus or other viral infections, and antivirals stopped it pretty quickly. However retinal inflammation and light sensitivity was from lyme/bart and did not go away so easily.

Muscle weakness, a lot of it was just fatigue from being sick and I lost a lot of muscle just laying in bed. However I did at times get high blood sugar, and lack of insulin can also contribute to muscle wasting, so check for that.

I would get increased uriniation from herxing, especially from lyme. This of course also affects my blood pressure, adrenal hormones, etc.

Stomach issues were mostly bart, but the increased stomach acid that I got was from taking too much vitamin D. Of course, antibiotics gave me diarrhea, and anything that messed with my adrenals could cause constipation or diarrhea.

Rainy - The "giving out" of legs happened early on before I even knew it was Lyme (took 11 years to know). But I came to realize my legs would feel like they were weak, but then I'd be able to walk up stairs or do body-weight squats. Every time I would feel they were going to give out, I'd do something to show myself they just feel weak.

Do you get migraines form the tense neck? That has been a dominant symptom for me since the very beginning. It's always right side, and while I get breaks from it, like the last week or two, when it hits there's not much I can do but wait it out. Excedrin Migraine helps, but I can't take it but rarely because of kidneys.

Qun - I never thought of herxing causing frequent urination. Not doubting it but had never thought of it before. How is the Bart for you now? Stomach?

astroman - It's interesting about you BP. That is, basically, what happens to me when I don't have the cluster of symptoms. In your case, it now seems permanent with lower amount of meds? Also, the fact your symptoms did cluster, and the time frame, is close to same I experience. Do you think it the stress led to autonomic problems? I don't even know if that is possible but thought I'd ask.

running wild said...


astroman - It's interesting about you BP. That is, basically, what happens to me when I don't have the cluster of symptoms. In your case, it now seems permanent with lower amount of meds? Also, the fact your symptoms did cluster, and the time frame, is close to same I experience. Do you think it the stress led to autonomic problems? I don't even know if that is possible but thought I'd ask.

Well, some of my family members also have high BP so part might be hereditary. Hashimoto is also known to increase BP from an anxiety point. Even when I feel good my cortisol is pretty close to the top of the AM range on conventional testing. My anxiety was usually worse in the early AM. In the past, cortisol was sometimes over and then too low in afternoon.

Rx Proranerolo is also used for tremors and anxiety (lots of uses), not just BP. I also had hand tremors which were partially from tendon weakness, but it was also worse when I had candida.

As far as stress goes, there were quite a few posts 5-6 years ago here about peoples lyme symptoms becoming more apparent, or even starting while they were under stress.