Been to Urgent Care and the ER, both think I have Lyme. Still waiting on blood tests.
First Urgent Care thought I had an allergy because last Thursday night I woke up with throat closing, unable to breathe. Prescribed me Benadryl and Prednisone.
Prednisone set me off! Felt like I was on speed. Running to the bathroom every 20 minutes to pee. Also lots of diarrhea.
Things got worse when I took a puff of my asthma inhaler (Ventolin). Right side of face and neck flushed/felt numb up to ear. Bottom lip numb.
Raced back to Urgent Care and they think I have Lyme disease because I found a tick on me back in June that resulted in flu for 2-3 weeks.
Been having bad pain, swelling in arms since June. First elbows, then right arm, then left. Next weak knees.
Went to Urgent Care and was diagnosed with tennis elbow, but then went back with trouble breathing and told Lyme. Still waiting for labs to return.
Almost passed out while they were taking blood because not eating or drinking (afraid of allergic reaction!) and was given crackers and Gatorade.
Started drinking a lot of Gaterade when I got home and think it may have caused a herx (??) that lead me to ER.
Stopped Prednisone and Benadryl. Stopped drinking Gaterade too. Only regular water and lemon water now.
Urgent Care put me on 21 days of Doxycycline (100mg twice a day) and the first two days have been a roller coaster.
Felt really good Day 1 - even took a shower for first time in a month - but then woke up with numb lips, face, and tight neck/hard to breath after drinking Gaterade and taking hypothyroid meds before bed. (Herxing from Gaterade plus levothyroxine?) That's when I went to the a ER.
ER ran Lyme Test, said inconclusive so ordered Western Blot Test. Waiting for results.
My PCP has been unconcerned and unreachable, so ER set me up with new doctor but I can't see her until September 16th.
Need to keep cold compress on the back of my neck constantly to help maintain body temperature.
Every time I get upset, face flushes, heart races, throat gets tight, and I feel like I'm going to pass out. Heat also causes similar symptoms.
Lots of pain and swelling in arms and elbows. Weak knees.
Up until yesterday, couldn't lay back because lymph nodes in chin, neck, and chest inflamed. Feeling better after taking Doxy again, but still prop self up with pillow.
Can't lay on sides yet. Wake up gasping for breath when I try.
Heart races when I wake up, too. Maybe from fear? Anxiety?
Feeling very weak and tired. Arms still sore or weak, but feeling better on doxy.
Must have AC on and oscillating fan on me when I sleep or have trouble breathing. Afraid to open windows cause hard to breath.
Can't take medicine for hypothyroid or asthma because they cause numb lips, flushed face, trouble breathing.
Yogurt and lemon water are helping. Finally slept last night after almost a week of barely any sleep.
I've taken 5 doxy so far. Missed a dose while at the ER. Took as soon as I got home at noon then took another this morning around 7am. (As instructed by Urgent Care.) Taking my sixth pill tonight.
Feeling very relaxed from the doxy, but also a little sore and very warm. Find myself breathing deep and slow sometimes. A little light headed/dizxy too when going up/down stairs too much. Peeing a lot. Some diarrhea, but not as bad as before. Yawning a lot. Is this normal??
Scared to eat anything!!!!! Don't know what is okay for Lyme???? Been eating boiled chicken, potatoes, some green vegetables, grapes, rice, bagels, saltine crackers, and yogurt.
Very scared and confused!!!!! Please help!
[ 09-04-2015, 01:19 PM: Message edited by: Mia ]
Posted by Lymetoo (Member # 743) on :
Moving to Medical Questions... I'll be back to help in just a bit.
Posted by Mia (Member # 46598) on :
Thank you!!
Posted by Brussels (Member # 13480) on :
It looks like you also have babesia (probably), if you got strong air hunger.
And that your body is getting more and more toxic. Time to find out which binders to take, and take them religiously, many times a day ...
....(or the air hunger can get worse, numbness worse, then more brain fog, more fatigue, more allergies, more cramps, then more infections that love all that toxin load).
Liver support, kidney support, GI tract support, mineral support, and fixing your food habits will immensely help.
I mean, drinking Gatorade doesn't look like it will help, but just add more mess to your system, in my view. Too much sugar (or even worse, aspartame) plus all the chemicals....
Find out slowly, methodically, what you can eat and what makes you feel good after eating, like energized but NOT nervous, anxious, but calm.
Eating cannot make you feel crap 10 minutes after ingestion, or make you lose energy.
My main food allergy symptom was merely fatigue after eating! Avoiding such foods made me slowly get energy after eating, and not lose my energy instead!
Most people just avoid MOST, if not ALL, PROCESSED foods and drinks.
Just for safety reasons, and so that your body has a way to build up from the mess of lyme and coinfections.
I'm out of lyme for the last 6 years, and now I do eat some junk food when I'm out (but I still feel Gatorade is too poisonous for me ).
I do drink alcohol on and off (mostly wine). But I COULDN'T do that when lyme was active. It would make my life too messy.
Anyway, I hope you can do changes slowly, find your binders, and feel better soon!
Posted by Mia (Member # 46598) on :
Thank you so much for responding, Brussels! I really appreciate it!
I looked up symptoms for Babesia and I don't really have many besides joint pain.
Could the "air hunger" be a side effect of the Doxycycline? Or maybe because I have asthma?
It only seems to affect me when lying down, but then again, my chin, neck, and chest are inflamed... Could be making breathing more difficult?
The doxy has lowered the inflammation and breathing has become easier. I actually slept last night for longer than 1-2 hours - the first time in almost a week!
I do tend to yawn every time I climb up the steps, but the Urgent Care doctor I spoke to today said it could be the doxy, too.
What exactly are binders and how do I find mine?
Also, does Doxycycline treat Babesia? Because I'm on Day 3 of doxy and it seems to be helping.
Posted by A.G. (Member # 44713) on :
Did you stop the prednisone abruptly, cold turkey or wean off as directed?
That could also worsen your situation.
I felt like I was going crazy when I had to take prednisone for an allergic reaction.
Posted by Lymetoo (Member # 743) on :
Also .. stopping thyroid meds cold turkey can be very dangerous.
Doxy does not treat babesia nor bartonella.
Posted by A.G. (Member # 44713) on :
Do you have an allergy to citric acid? Gatorade has that in it. Some people are allergic to citric acid (my sister).
Gatorade does no killing of the bugs so it's not a herx from Gatorade, imho.
Posted by Mia (Member # 46598) on :
Thank you all for responding! I will reply to each of you below in order, as much as I can...
@A.G. - The doctor told me to stop the Prednisone cold turkey, which is what I think sent me to the ER. Although, I was only on it for two days, thank God.
The Prednisone didn't interact well with my Ventolin inhaler, causing numb lips and facial flush, and I think it was still in my system when I took my thyroid meds (Lebothyroxine) - which I take at night because they absorb better for me that way.
Now that I think about it, I felt like I was on speed last year when I first started Levothyroxine, too. Couldn't sleep for days. Maybe the Prednisone amplified that effect?
I don't think I have an allergy to citric acid. I've been drinking lemon water to help me detox since I went to the ER yesterday and it's helping me a lot. So is the yogurt I'm eating 2-3 hours after taking my doxy.
I do think I had an allergic reaction last Thursday to something, but I don't know what it was.
I ate at Burger King in the morning and got a whopper with bacon and cheese, fries, onions find, and a coke. But I've eaten burgers before and plenty of steak without any issues.
I did, however, sit in a very hot car with no AC on the way down (a 45 minute drive one way!) and the way back home. That's when I started feeling sick with pressure on my chest.
Waited in the same hot car while my mother ran into the store to buy some things, felt even worse.
Got home and decided to add some raw kale from the garden into my chicken caesar wrap for dinner.
I should note that I recently started including kale in my diet in early July, when my elbows started hurting, increasing my intake until I was eating it on a daily basis. I later learned that kale is a goitrogenic, meaning it reduces thyroid function. Not good at all for my hypothyroid.
I found a forum online dedicated to kale allergies. Most people react poorly to it when its raw and can go into anaphylaxis and I certainly felt like I was about to go into anaphylactic shock that night.
I've also read that certain ticks can make you allergic to beef or mammal meat when they bite you, so maybe the burger was the culprit?
Or maybe a combination of the two, plus baking in a hot car?
All I know is I got bit by a tick on the back of my neck in June, came down with a bad flu for 2 to 3 weeks, then started eating the kale in early July, and that's when my elbows begin to hurt.
The more I ate the kale, the more problems I had with my elbows.
I even had to take Pepto Bismol for 4 days straight once because of gastrointestinal upset, but I didn't associated with the kale that time.
@Lymeto - Thank you for your concern. Luckily, I'm on a very low dose of thyroid meds (25mg of Levithyroxine every night) so it shouldn't effect me too much.
I asked the Urgent Care Doctor today if I could safely skip it for a week or two and she said yes. I also asked a pharmacist and she also said yes.
I even went to a hypothyroid forum and found a great thread with tons of comments from people who went on vacation for 3 weeks and accidentally forgot to bring their thyroid meds. No major ill effects for low dose patients like me.
Also, the ER doctor suggested that I could be reacting to a filler in the levothyroxine because my immune system is down.
Plus, the Levothyroxine I take is generic and you can't guarantee if you will always get the same brand generic unless you ask for it specifically.
Something to keep in mind for all generic medications.
Posted by Mia (Member # 46598) on :
Oh and I spoke to the Urgent Care doctor today. My ELISA test came back negative, but she still thinks I have Lyme or am fighting off a bacterial infection.
The ER doctor tested me for Lyme too (two days later after I started doxycycline) and said my ELISA test came back "equivocal", so she ordered a Western Blot Test??? I have no clue what that means????
The Doxycycline seems to be helping me... My elbows feel a bit better and the inflammation under my chin, neck, and collarbone has gone down somewhat.
I actually slept last night for more than a few hours. First time since last Thursday!!
I did wake up with my heart racing, but the Urgent Care doctor said that could be from anxiety???
Not sure what tomorrow will bring. Still scared...but hopeful?
Posted by A.G. (Member # 44713) on :
Did the Dr tell you to take the thyroid med at night?
Don't listen to Drs who blame physical signs/symptoms on anxiety.
Have you watched "Under Our Skin?". If not, please do so Asap.
Posted by Lymetoo (Member # 743) on :
I wish you could find a Dr who would prescribe the more natural Nature Throid (similar to Armour) .. It won't make you feel like you are on speed and maybe you wouldn't have side effects like you do now.
Kale is also an oxalate .. I would stay away from foods with oxalates. They can DEFINITELY cause joint pain and pain in general. Spinach is also high in oxalates. I found out about oxalates the hard way.
It sounds like you are on the right track with the Lyme. An "equivocal" ELISA is not to be ignored. I wish you were getting a Western Blot through Igenex Lab, but I know that is NOT what the DR ordered.
Keep it in mind in case this WB comes back negative.
Posted by Mia (Member # 46598) on :
@A.G. - No, actually, I'm the one who switched to taking my thyroid meds at night after reading quite a few things online about how it absorbs better that way and takes away brain fog/gives you more energy in the morning.
Gotta admit, it was working much better for me that way for almost a year.
And yeah, even the ER doctor suggested most of my symptoms were anxiety related when I mentioned my beloved cat died back in May. (I was scared and babbling because my face/throat was flushed and numb.) Mainly because my vitals were stable.
Luckily, she was at the end of her shift and the new doctor she sent in took me more seriously. She's the one that set up a new PCP for me and told me my ELISA came back "equivocal" - which I still don't understand what that means???
No, I haven't seen "Under Our Skin" yet... I will see if I can find it on Netflix or YouTube. Thank you.
@Lymetoo - I've heard about Armour thyroid... Isn't that made from dessicated pork thyroid?
If so, and if it turns out I have a beef (mammal meat) allergy from a tick bite, then I probably won't be able to take it. I need to be tested by an allergist first, I guess.
I can deal with having hypo, though. I had it for almost 20 years before I was diagnosed and an on a low dose anyway.
Hypo doesn't scare me, but the reaction I had to thyroid meds recently does. I mean, I can always start taking levo again once my immune system is back up and running correctly.
Oh my gosh! I didn't know that about kale! That's terrible! And explains so much...
But would the doxy still be making my arms feel better if it was all oxalate related?
What does "equivocal" mean and why is it not to be ignored??????
And how on earth do I test negative on one ELISA but then test equivocal on another two days later?
Also, how would I get a Western Blot through Igenex Labs? Is Igenex really good or something???
Posted by Keebler (Member # 12673) on :
- Predisone can cause extreme anxiety and even panic attacks in someone with lyme or other infection.
And . . . it can take days - or weeks - to settle down. Aggressive rest, yes "aggressive" or maybe more precisely, very disciplined REST in a dark & quiet room can help and is actually essential as best possible.
The very best self care habits with excellent nutrition as well.
Best to avoid TV other than maybe quieter kinds of travel DVDs or some PBS programs but avoid all commercials.
I had to go through this and, only with advice from someone who knew to tell me this, was I able to make my way out the other side.
ADRENAL SUPPORT is essential as well.
Of course, you will need to find a LLMD but my energy goes only so far. I wanted to address the state that steroids / prednisone can cause and how important it is to be as quiet and calm as possible to get through this part of it.
While the computer can be a lifeline and vital educational tool for you, try to limit your time on it. And be sure not to view screen in the dark . . . and do not have a computer or cell phone even in your bedroom where rest is key.
Good luck. -
Posted by Keebler (Member # 12673) on :
Topic: what do STEROIDS [such as prednisone] actually do to those with lyme? Risks, long term damage discussed. Links.
Mia,
What's done is done, right now the best is to rest, rest, rest and eat the best foods you can. When you find a LLMD, be sure they know about the prednisone.
CORDYCEPS would be an excellent adrenal support for starters. -
[ 09-05-2015, 02:43 AM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences. -
Posted by Keebler (Member # 12673) on :
- Gatorade cannot cause a herxheimer reaction but it can make someone who is in ill health feel just awful, and more agitated. Best to avoid.
If you are looking to replace electrolytes, a little bit of organic lemon juice in water with a dash of sea salt is a good idea (rinse teeth afterward and do not brush for at least 30 minutes, though). Here's a good option, too, to have on hand:
Florida dipotassium phosphate, Great Salt lake potassium sulfate, Gulf of Mexico magnesium sulfate, trace minerals from Texas and Arkansas, Citric Acid. -
Posted by Lymetoo (Member # 743) on :
Luckily, she was at the end of her shift and the new doctor she sent in took me more seriously. She's the one that set up a new PCP for me and told me my ELISA came back "equivocal" - which I still don't understand what that means???
It means "something showed up" .. like a lightly positive result.
No, I haven't seen "Under Our Skin" yet... I will see if I can find it on Netflix or YouTube. Thank you.
@Lymetoo - I've heard about Armour thyroid... Isn't that made from dessicated pork thyroid?
If so, and if it turns out I have a beef (mammal meat) allergy from a tick bite, then I probably won't be able to take it. I need to be tested by an allergist first, I guess.
Not sure about the pork. The meat allergy "alpha gal" is about red meat if I'm not mistaken.
Oh my gosh! I didn't know that about kale! That's terrible! And explains so much...
But would the doxy still be making my arms feel better if it was all oxalate related?
Yes, you could have lyme AND a reaction to oxalates.
And how on earth do I test negative on one ELISA but then test equivocal on another two days later?
Also, how would I get a Western Blot through Igenex Labs? Is Igenex really good or something???
Stuff happens like that all the time with testing. Igenex has a more sensitive test and they test for MORE BANDS than the other labs. You can order a test kit from www.igenex.com and take it to your Dr. He/she will sign it and have you get the blood drawn for it. When you send it in, you will pay for it then. Posted by Brussels (Member # 13480) on :
Mia, sorry for late response... I missed your thread...
You're welcome!
You said: I looked up symptoms for Babesia and I don't really have many besides joint pain.
Air hunger is a classic Babesia symptom.
but you may have air hunger only during herxes (and these can be scary too). But mostly, people with babesia have air hunger.
Many people with babesia have only slight babesia symptoms, until you start treating it. Then things change.
Mia: 'Could the "air hunger" be a side effect of the Doxycycline? Or maybe because I have asthma?'
Yes, I do think so: either herxes from doxy, or asthma (allergic reaction to something').
Mia: 'It only seems to affect me when lying down, but then again, my chin, neck, and chest are inflamed... Could be making breathing more difficult?'
Definitively... Hard to know.
Mia: 'What exactly are binders and how do I find mine?'
I used many, but my favorite binders are chlorella vulgaris, bear garlic tincture, MSM in powder.
Sometimes I took clay, charcoal, Diatomaceous earth... but not as often as the 3 stuff on the list above.
doxy, I think, does not treat babesia...
I hope you find your way out of this all. But definitively, if I were you, I would IMMEDIATELY stop eating junk food (burger king, sodas, energizing drinks).
When you get better again, you may get back again to junk food, but in case you have lyme, junk food will help you go downwards. It is not nutrition, but garbage that you are ingesting.
When you are healthy again, I guess it's not a big deal to eat burger king again.
I don't think I would have survived even a couple of months if I just ate junk food during active lyme.
If you want to give your body a chance to recover, stopping junk food, junk drinks is number one at the list of things to do. It's my opinion, of course. Based on experience...
I no longer have lyme (6 years lyme free), but I can only stand eating junk food for about 2 days.
3rd day, I feel like I'm getting sick. My brain gets blurred, I can't sleep too deep. I lose energy, I feel crap, really.
That happens when I'm traveling and not cooking my own food. I don't exactly go eat junk food, but only eating at restaurants is enough to start the downward process....
It takes just 30 minutes to cook my organic food (also because I eat many stuff raw). It's not a big job, really. I cook for 3 people, my average is 30 minutes for a clean, organic, whole meal.
Wishing you good luck in finding out if it's lyme or not. Watch the film lymetutu is suggesting. Very informative.
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