[applewine]

Could somebody please help me figure out what I have and what I should do?

My symptoms started after taking multiple simultaneous antibiotics from a doctor I believe was crazy who diagnosed me with some unvalidated "lyme disease".

I was prescribed Bactrim, Refampin, Minocyclin and Azithromycin to take long term for 6+ months. I think I took Bactrim for a month or two and the rest for about 5 months. This was about three years ago.

A couple weeks into the antibiotics I began to experience unusual sensations all over my body. I felt snow flakes or rain drops all over. I later experienced water sensations running all over and stinging. They are mostly random or provoked by pressure and not often by skin, but I can get unusual sensations from scratching. I told the doctor and he said it was just the antibiotics fighting the lyme infection.

After I left the doctor after deciding there was no evidence or proof of this I stopped the antibiotics and the symptoms did not go away. A few months later I got a slight constant burning and numbness in my feet which lasted maybe three weeks. It then went away and has not returned.

Over time the symptoms calmed down and removed from my upper body and went to mostly my feet so it feels like small splashes of water in my shoes when I walk. After 18 months I believe the symptoms went away or were so little I totally forgot about them and moved on with my life.

I was clear of symptoms for maybe a year when I got a very bad upper respiratory infection and a few weeks into that all my symptoms came back strong all over my body. I was heart broken.

I then waited 6 months and over that time the sensations started to calm down again and were not as low as before but were mostly in my lower legs and not my whole body. A noticeable difference.

Then at 6 months I got another upper respiratory infection, though not as bad as the last one. My symptoms returned after about 10-14 days into the infection and were once again very active and all over my body.

That is where I cam now. I have seen a neurologist and saw him as of the last infection, but not the most recent and plan to go back asap. I just visited my primary care physician and they were not able to suggest much. We had hypothesized that it was metabolic or nutritional last time because of a very low carb diet and so I took vitamins, but now it has come back a second time with an upper respiratory infection and that seems to be a pattern.

My only other health problems are some trigger point muscle symptoms in my upper body, jaw, neck and head and right hip. I also just had a very scary and unusual fainting episode that happened in public while standing. No idea if it is related or if it was a fluke and I was low on food and dehydrated. I hadn't eaten much that day and I'm still getting over a cold. Never had that happen before.

My neurologist said last time 6 months ago that I could get an evoked potential test or do physical therapy and the test was optional. I've had small fiber test at Johns Hopkins during the first bout it happened maybe 10 months into it if I remember. They said they thought it could have been immune mediated. At that point I had no upper respiratory infection, just the antibiotics. I've also had the standard motor tests many times.

I'm also looking for a concierge / direct pay primary care doctor to discuss this with.

Thank You.

[mrsD]

It can be very difficult to isolate what is causing your problems.

But right off the bat, I will ask what antibiotic you were given for those 2 respiratory infections? Was it a fluoroquinolone? Cipro, Levaquin or Avelox? Those drugs cause nerve damage in some people, and it can be quite long lasting too.

There is much controversy about overuse of antibiotics today.
Long term use, may damage your mitochondria. (as in Lyme treatments and acne treatments). Mitochondria are derived from ancient bacteria that became symbionts with mammals. And the antibiotics kill invasive pathogenic bacteria by disrupting cell walls of bacteria, and so therefore damaging mitochondria in cells which are the energy producing organelles in all our cells. Short courses of antibiotics are less problematic, but in the autism community there is research showing chronic ear infections treated with antibiotics in children may lead to autistic results in some people. Therefore today antibiotics for children are discouraged unless something really intense is going on..like abcesses, mrsa, etc.

[applewine]

Originally Posted by mrsD

It can be very difficult to isolate what is causing your problems.

But right off the bat, I will ask what antibiotic you were given for those 2 respiratory infections? Was it a fluoroquinolone? Cipro, Levaquin or Avelox? Those drugs cause nerve damage in some people, and it can be quite long lasting too.

There is much controversy about overuse of antibiotics today.
Long term use, may damage your mitochondria. (as in Lyme treatments and acne treatments). Mitochondria are derived from ancient bacteria that became symbionts with mammals. And the antibiotics kill invasive pathogenic bacteria by disrupting cell walls of bacteria, and so therefore damaging mitochondria in cells which are the energy producing organelles in all our cells. Short courses of antibiotics are less problematic, but in the autism community there is research showing chronic ear infections treated with antibiotics in children may lead to autistic results in some people. Therefore today antibiotics for children are discouraged unless something really intense is going on..like abcesses, mrsa, etc.

I did not take any antibiotics for these upper respiratory infections. The symptoms came back all by themselves when I had them.

[applewine]

Originally Posted by applewine

I did not take any antibiotics for these upper respiratory infections. The symptoms came back all by themselves when I had them.

Is there any chance at all that the neuropathies could be caused by my trigger points? I find it hard to believe because they are all over and not just numbness, but rather water, burning and stinging.

I had a real health scare in the years before these sensations when I had some very unusual health problems which I finally discovered were caused by trigger points. Unfortunately my trigger point therapist among others lead me to people to said I had lyme disease. The antibiotics my lyme doctor gave me were not doxycyclin and I don't know what they did to me.

All the symptoms that were caused by trigger points are as follows: Jittery vision when reading, random dizziness, wobbly head feeling like I'm under water, random zaps to the head like electric shocks, numbness of the face, tinnitus, TMJ pain, temple pain, chest pain. That is just the upper body. I had some right hip involvement as well. I'm totally secure in those symptoms and they don't scare me now that I figured out they are just trigger points. No doctors could tell me in two years, I figured it out.

However, these water, burning and stinging sensations all over my body which started after the antibiotics and take 2 years to go away and will come back at any point if I have an upper respiratory infection I'm worried are beyond my ability to figure out and cure. I thought the same thing of the other symptoms, but antibiotics are too strange.

I have seen some people out there who say they have TMJ too and get water sensations all over. It would be great if it was just the muscles somehow, or maybe TMJ is predisposed with certain kinds of neuropathy which aren't visible. Then it only takes the neuropathy to get worse to get more obvious neuropathy symptoms.

[mlerae]

TMJ symptoms can put pressure on the inner ear causing a lot of these symptoms. When your jaw is out of alignment the tension and pain can spread through the whole body. Have you ever worn a dental night guard? It not only protects your teeth, and gum and bones it relaxes muscles in the TMJ area that are continually stressed. When the muscles relax it could relieve pressure around the inner ear?

[applewine]

I can heal from it and after 3-4 months the painful sensations are gone and I just have the cold water and by 6 months they aren't very much and just water in the feet. By 18 months the sensations are gone I think. That is what I've experienced. I think I then went a year without them last time. I don't know how I went 28 months without an upper respiratory infection, so maybe I'm forgetting something.

I have a hypothesis. The only other thing is that I've noticed the papillae on the tip of my tongue die off sometimes and especially when I get an upper respiratory infection. This is probably because I stick my tongue in my nasal cavity to spit out the mucous so it doesn't drip.

Maybe I should stop doing that and see if the thing with my tongue doesn't happen next time and if the neuropathies don't happen either. Not really sure about that, but worth a try. It certainly never caused neuropathies before I took those antibiotics and I'd been doing that for about 15 years when I get an upper respiratory infection, but I think the tongue may have changed, but I've only noticed it in recent years.

If geographic tongue are the dying off of nerves on the tongue from an immune error, then maybe if the body is attacking that while you have a systemic virus going on it will then attack some other nerves too. Maybe it confuses the taste buds ( nerves ?) on the tongue with the virus the body is fighting and then finds some other nerves, also sensory, around the body and inflames them. That is an interesting hypothesis of mine.

This may not happen with geographic tongue under normal circumstances unless the geographic tongue is caused by exposing the tongue to too much systemic virus or mucous like constantly stick your tongue into your nasal cavity. A geographic tongue caused by local immune response with no systemic infection may not then relay an error to attack sensory nerve cells throughout the body so this would explain why geographic tongue would not normally cause this response.

[applewine]

Originally Posted by mlerae

TMJ symptoms can put pressure on the inner ear causing a lot of these symptoms. When your jaw is out of alignment the tension and pain can spread through the whole body. Have you ever worn a dental night guard? It not only protects your teeth, and gum and bones it relaxes muscles in the TMJ area that are continually stressed. When the muscles relax it could relieve pressure around the inner ear?

My ears feel fine. I have a little constant tinnitus in my right ear which seems to be from the neck or jaw muscles from what I have read.

I have burning, stinging and water sensations all over my body, especially in the feet. They are not constant, though now some of the stings are lasting a while since it is really active right now. The stings are brief and the burns last a second or two and the water is cold and slow too.

My experience is now that this has happened twice after an upper respiratory infection. It seems to be about 10 days or so into the infection that the symptoms come back.

[applewine]

I just saw the neurologist yesterday. I went to the lab to get some blood tests today and I'll get an EMG next week.

These symptoms are always the worst the first couple months after an upper respiratory infection. Right now my wrist is even making stabbing or shooting pain when I press on the table. I remember it doing that last time, but eventually these painful symptoms went away and I was left with the water sensations in the feet.

This is giving me extreme anxiety because I cannot see a way out of this. Even if they do find the cause, which they don't seem to be very good at with neuropathies, I see very few conditions where they have a cure for them anyway.

This has been going on for 3 years and I'm gettine worn out. Before that I had another mysterious condition for a year or so and figured out all my strange symptoms were being caused by a muscle over-training problem called "trigger-points" I really lucked out on that one. I have trigger-points in my upper back and neck and they caused my balance, vision and hearing problems and electric shocks in the head.

I still went through hell because no doctors of any type ( I saw dozens) could tell me what was wrong. They didn't know about trigger-points at all! Maybe if I had been diagnosed early and correctly I never would have gone on to see a crazy lyme disease doctor to mess me up.

The problem is I wanted to "make-sure" I didn't have lyme disease because everybody was telling me about it and saying I should go to this doctor or that and so I figured what the heck and gave it a try. Now I have some weird neurological condition I feel the same way about as the other condition, hopeless.

This time I really think that I won't be able to figure it out or they won't be able to cure it. The best thing I can do is try to live one day at a time, but I so wish I didn't have to go through this.

On the positive side if this is the worst it ever gets I can certainly live with it and do many things. It just keeps healing and coming back.

I've even thought of going back to the crazy doctor just to see what he says, but I'm sure he will tell me that it is these infections that he said I had.

He told me that if I don't take his treatment that I would die, well the problem is also he has no proof and also he hasn't cured anyone either for these "chronic lyme" disease conditions.

He gave me four antibiotics and some supplements. lumbrokinase (a blood thinner), "Garlix" ( a garlic supplement of some sort) and a pro-biotic.

He also gave me some kind of tincture for the first weeks before the antibiotics saying I would have a "herx" from it or something but I felt nothing. I should have stopped right there. I think that was supposed to be a test or something.

I can't believe how foolish I was, but after suffering from a strange condition for a year (actually trigger points caused) and tons of healthcare people talking about "lyme disease" I somehow thought better to be safe and just give it a try, which I did for 5 months. I want my life back.

My neurologist said that the antibiotics could cause c. dif infection but didn't think they would do this anyway by a side effect or my immune system.

If would be awesome if it was just something simple like b12 which could be fixed. I technically read some people have a b12 problem where their levels are high, but they don't absorb it. That must be genetic or something, I don't want a genetic problem, but technically if they can do a work-around fix for it that would be better than nothing.

[applewine]

Originally Posted by applewine

I just saw the neurologist yesterday. I went to the lab to get some blood tests today and I'll get an EMG next week.

These symptoms are always the worst the first couple months after an upper respiratory infection. Right now my wrist is even making stabbing or shooting pain when I press on the table. I remember it doing that last time, but eventually these painful symptoms went away and I was left with the water sensations in the feet.

This is giving me extreme anxiety because I cannot see a way out of this. Even if they do find the cause, which they don't seem to be very good at with neuropathies, I see very few conditions where they have a cure for them anyway.

This has been going on for 3 years and I'm gettine worn out. Before that I had another mysterious condition for a year or so and figured out all my strange symptoms were being caused by a muscle over-training problem called "trigger-points" I really lucked out on that one. I have trigger-points in my upper back and neck and they caused my balance, vision and hearing problems and electric shocks in the head.

I still went through hell because no doctors of any type ( I saw dozens) could tell me what was wrong. They didn't know about trigger-points at all! Maybe if I had been diagnosed early and correctly I never would have gone on to see a crazy lyme disease doctor to mess me up.

The problem is I wanted to "make-sure" I didn't have lyme disease because everybody was telling me about it and saying I should go to this doctor or that and so I figured what the heck and gave it a try. Now I have some weird neurological condition I feel the same way about as the other condition, hopeless.

This time I really think that I won't be able to figure it out or they won't be able to cure it. The best thing I can do is try to live one day at a time, but I so wish I didn't have to go through this.

On the positive side if this is the worst it ever gets I can certainly live with it and do many things. It just keeps healing and coming back.

I've even thought of going back to the crazy doctor just to see what he says, but I'm sure he will tell me that it is these infections that he said I had.

He told me that if I don't take his treatment that I would die, well the problem is also he has no proof and also he hasn't cured anyone either for these "chronic lyme" disease conditions.

He gave me four antibiotics and some supplements. lumbrokinase (a blood thinner), "Garlix" ( a garlic supplement of some sort) and a pro-biotic.

He also gave me some kind of tincture for the first weeks before the antibiotics saying I would have a "herx" from it or something but I felt nothing. I should have stopped right there. I think that was supposed to be a test or something.

I can't believe how foolish I was, but after suffering from a strange condition for a year (actually trigger points caused) and tons of healthcare people talking about "lyme disease" I somehow thought better to be safe and just give it a try, which I did for 5 months. I want my life back.

My neurologist said that the antibiotics could cause c. dif infection but didn't think they would do this anyway by a side effect or my immune system.

If would be awesome if it was just something simple like b12 which could be fixed. I technically read some people have a b12 problem where their levels are high, but they don't absorb it. That must be genetic or something, I don't want a genetic problem, but technically if they can do a work-around fix for it that would be better than nothing.

I had an interesting thought. What if those antibiotics I took changed my gut flora and that is making my immune system react against my nerves when I get an upper respiratory infection? The first time it happened without an infection though I think... But each subsequent time it was right after an upper respiratory infection.

I heard about this thing called FMT which is a transplant of microbes from one person to another to restore a healthy microbiome of the gut.

Apparently FMT accidentally lead to a reversal of MS in three people. I'm not sure how to fully scrutinize that, but here it is:
http://www.fecalmicrobiotatransplant...1_archive.html

Ideally we would be able to test our gut microbione from a sample and determine if it was unhealthy or what kind of problems it would cause. We don't even have access to test a patient's sample to determine its profile, and we certainly don't know which profiles might be connected to various conditions.

If I knew for sure mine wasn't healthy even if they didn't know what problem it would cause I think that would be a good test to warrant going ahead with it.

The one thing that scares me is that some people developed auto-immune conditions some time after, no idea how long. They don't know if the transplant did it or not. But, if this is supposed to fix auto-immune conditions then at the very least you would have thought it would prevent that. One got Idiopathic thrombocytopenic purport, the other got Sjögren's and the third got neuropathy.

I even saw a report of the FMT curing Idiopathic thrombocytopenic purport in one person though, can't find it now. T.J. Borody reported that. So, this is a little confusing.

Watch Lawrence Brandt here: http://www.youtube.com/watch?v=ot7e9bQO2U8

[Hopeless]

I am so sorry to hear what you have been through. I have no idea of what to say. The drugs you were on have some bad side effects. I hope you find answers and help.

Good luck to you.