When is it time to go to ER

Not in good shape.

Been on abx suprax for somewhere around 7-10 days. Symptoms are at intolerable levels. Muscles in pain, feels like I can barely move. Holding my head or body up requires seriousnes concentration.  Unless I'm running on a treadmill I'm extremely weak. Scared as hell like I'm undergoing permemnatnt brain damage or something.  All my instincts tell me this the 'herx' thing but my gripping panic and fear make me very concerned like I have something much worse going on.  Not even sure if a hospital would help I'm just really really concerned lately.  Last 4 nights In a row have been like this.  

[Ricobord]

Interesting description of your shower experiences. I have seen a few somewhat similar descriptions on MS forums, by MS patients describing how they feel worse in and after a shower.  I am not suggesting you have MS, but there is a fair amount of overlap in Lyme and MS symptoms.

I have had a number of MS-like symptoms, including heat intolerance. I haven't had the shower intolerance, though.

When Lyme affects the neurological system, it creates sensory disorders.  The nerves can't communicate properly when they're infected and can do the equivalent of short circuit or misfire. They might overreact (e.g.pain at slight touch) or underreact (e.g.numbness).  

Someone did an eye opening study where they examined Lyme infected nerves up close and discovered that the sensation experienced by the patient was determined by the pattern of damage from the spirochetes.  Whether it was burning, tingling, numbness, or hyper sensitivity, it all resulted from infection of the nerve responsible for feeling in that area. (I read this in an article a while ago, but I can't find it at this moment.)

It sounds like when you're in the shower, some nerves in your skin are screaming alarms that overload the limbic system and send your body into high stress mode, almost like a panic.  Does it happen in the bath?  If not, you might stick with baths or sponge baths for a while to avoid over stimulating your already stressed out nervous system.  Another good reason for Epsom salt baths...the magnesium helps soothe nerves and muscles.

[mojogal]

There are prescription meds that you can take for herxes, that Burascano recommends in his guidelines. You can also take a more natural supplement called activated charcoal, Dr Schaller recommends.

These two LLMD  are out there with Books and all and very well known, that is why I mention their names on this forum.

I don't think an ER would help much and would probably look at you strangely if you mentioned the word herx. I actually prefer the charcoal. It does work.

[pally10101]

I have the charcoal.  I've only taken it twice because I heard it can reduce the effectiveness of the abx.  At this point though I just need to feel better fast.

[JackieCalifornia]

If you're feeling THAT bad, then I'd call the doc's office and tell them how you are feeling, for how long, and how it compares to how you've felt before.  

Then suggest the charcoal and see what they say -- and the doc might suggest you lower the meds dosage temporarily, but the DOC is the one to make that decision.

If the doc's office is clueless about charcoal, then I'd call the pharmacy, remind them what prescriptions you are taking, and ask if the charcoal is okay or how long you have to wait between charcoal and meds.

You're right to be careful about not interfering with the meds .... take care, let us know how you do, okay?

[mojogal]

You just have to time it right. 2 hours before or 3 hours after the abx. Otherwise it can absorb the abx. It really helps with herxes.

[pally10101]

The doc is the one that suggested the charcoal. A few hours after the abx. I guess I should trust em and take it. I just really wanna knock this thing out once and for all and not have anything interfering with the meds.  Ill almost die if I have to lol - to kill every last one if these things that are trying to kill me. It's a war.  I'd shrink down to microbial size with a war helmet on and personally punch the bacteria in the face and kill them if I could.   It's me against them.

[JackieCalifornia]

Then I'd take the charcoal per doc's instructions.

Here's a motivator for you:  pain and stress such as you are having now tends to lower your immune system and make killing the infection harder.  

Therefore relieving the pain and stress with doc-approved charcoal is a good thing.  

Go for it!

[Ricobord]

Sorry to hear about your herxing. I know it can be bad.  (At least it eliminates any doubt about your Lyme diagnosis!)

My doc recommends Quercetin (a supplement) and Alka Seltzer Gold (not the regular kind). I also took Chlorella, which definitely helped me. For pain, I took Epsom salt baths (warm, not too hot) and used a heating pad on the low setting. (Just don't sit or lie on a heating pad. You can literally get burned without realizing it.).

When my rib pain got to be too much, I used a microwaved gel pack that I got at the drugstore. I learned how long to microwave it for varying levels of heat.

Easing herxes is all about detoxing and reducing inflammation, so be sure to avoid any foods that contribute to inflammation, like sugar, saurated fats, and soda.  I did a bunch of research into coffee enemas for detoxing, but my husband and my mom talked me out of it. They were too freaked out by it. But some Lyme sufferers swear by them.

Occasionally, I took an Advil. I took them sparingly, though, as I didn't want to burden my liver further.  A couple times, I was desperate enough for the Vicodin I got in the hospital. My LLMD discourages narcotics, though.

[Ricobord]

I forgot to mention the ER. If you're having arrythmia or other life threatening symptoms, then go to the ER. I went for breathing problems the first time and severe abdominal and rib pain the second time. I wasn't diagnosed until after the second visit.

Once, I woke up in the middle of the night with my heart pounding so hard it shook the bed. (I was laying on my stomach.)  I grabbed my pulse oximeter and it said my heat rate was 155. I lay there wondering if I should wait and see if it slowed,down or call 911. I had a five year old sleeping in her room and my husband was out of town. I was literally wondering if I needed to call 911 for an ambulance. I didn't want to, but I thought it would be awful for my poor kid to find me dead in bed in the morning. I think that was my lowest point with Lyme+.

Th good news is that while I was considering my options, my heart rate began to come down. I decided to stay and try to think calming thoughts and take deep breaths.  My encouragement came from knowing I would have my LLMD consulatation in a few days.

So, if you have anything life threatening, definitely go to the ER, whether it be your heart, your breathing, or even stroke like symptoms.  Some have gone for severe neurological symptoms.  The only caveat is to remember that they will not believe you have Lyme Disease, even if you tell them you're diagnosed with it, unless you have a CDC positive test result' of course. You might get some pain meds for severe pain, but you might not. They are always on the lookout for drug seeking addicts, and if they don't think you have Lyme, they might label you as such.

Hang in there!  It will eventually get better.

[pally10101]

Thanks guys. Yea I suppose I should be happy as this is a sign that I'm on the right track.  I was doing a lot better before I started the abx so the drastic change being tied to a die-off reaction makes sense.  Time to ruin another holiday weekend "resting" instead of going out I guess.

Another thing I notice is my complete and utter dread of taking a shower. Like clockwork if I stand under the shower, even if its not too hot I begin to feel immense anxiety, pain in my legs, weakness and like the frequency of the water hitting me is "damaging me" and I have to quickly get out and it takes hours to calm everything down afterwards.  Not sure what the hell that is all about either.

[Ricobord]

Interesting description of your shower experiences. I have seen a few somewhat similar descriptions on MS forums, by MS patients describing how they feel worse in and after a shower.  I am not suggesting you have MS, but there is a fair amount of overlap in Lyme and MS symptoms.

I have had a number of MS-like symptoms, including heat intolerance. I haven't had the shower intolerance, though.

When Lyme affects the neurological system, it creates sensory disorders.  The nerves can't communicate properly when they're infected and can do the equivalent of short circuit or misfire. They might overreact (e.g.pain at slight touch) or underreact (e.g.numbness).  

Someone did an eye opening study where they examined Lyme infected nerves up close and discovered that the sensation experienced by the patient was determined by the pattern of damage from the spirochetes.  Whether it was burning, tingling, numbness, or hyper sensitivity, it all resulted from infection of the nerve responsible for feeling in that area. (I read this in an article a while ago, but I can't find it at this moment.)

It sounds like when you're in the shower, some nerves in your skin are screaming alarms that overload the limbic system and send your body into high stress mode, almost like a panic.  Does it happen in the bath?  If not, you might stick with baths or sponge baths for a while to avoid over stimulating your already stressed out nervous system.  Another good reason for Epsom salt baths...the magnesium helps soothe nerves and muscles.

[pally10101]

All I know is. Until things let up I may avoid showers altogether and do the Epsom baths at night like you said.  I also just bought a shower filter in case there's a water quality problem in my building.

The oddity of my health problems is that apart from an index finger, they ALL started after I moved to San Diego, and 90% of it has been since I moved into this appartment.  This has caused me to almost literally go crazy trying to eliminate my furniture, the hot tub machine here, mold in the vents, carbon monoxide from the street, mercury in my filings, and anything else I can think of that may be doing this to me as alternatives to lyme.  

[JackieCalifornia]

Can you go stay with a friend or relative in a different place for a week and see if your symptoms lighten up?  Esp. if you can go back to somewhere that you used to live without reactions like you're experiencing now.

[JackieCalifornia]

..... further explanation for my comment:  you may be allergic to something in your new place, like carpet adhesive, that you can't get away from.  Even a long weekend away might do the job.

[pally10101]

Trust me I thought of that many times - I've even thought of staying at a hotel for a few nights.

Latest clue and more proof that this is lyme I guess - intense spasming of my left leg, started last night throughout sleeping and going on this morning.  Feel quite shaky today.  Epsom salt balth tonight is def in order.

[JackieCalifornia]

I took (and still take) magnesium supplements every day .... Epsom are magnesium, just absorbed through the skin.  A comfortably warm bath with Epsom salts can be very soothing.

I had a nonLLMD scold me once not to take magnesium supplements because he said it could damage my kidneys, but I did some reading and it said that one gets diarrhea before kidney damage can occur, and I never got diarrhea.  

Hope you feel better soon!