Topic: Please help with advice, I'm extremely sick tonight!!!
Summer3
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posted
Last Sunday I began my pulse of Mora and Cumanda. Cumanda is historically very difficult for me to take. I had to stop taking it the last time I tried after about a week. I had severe depression, fever, headache, etc.
Last week I was put on Toprol XL. This week I had the dose moved up to 12.5mg a.m. and 25 mg p.m. I also had to add Florinef 0.1 which I've taken two doses of.
Today towards dinner time, before I took any herbs or evening meds I came down with extreme chills, fever of 103, heart palpitations very strongly, headache, severe muscle pain, weakness and an overall very sick flu-like feeling.
I have felt like this with antibiotics before from herxing (and I've taken a lot of very strong doses in the past). Do you think that's what it is? I normally don't react like this to herbs. I have no negative effects from Banderol/Samento or any of the Buhner herbs except artemisinin.
My other thoughts are a bad reaction to either Toprol or Florinef but I think that's unlikely although it does say to call the doctor right away if you experience fever and some of the other symptoms. I get low-grade fevers all the time and higher ones like this more rarely but still a few times per month.
I already called the cardiologist this week about fainting thus the med changes. I don't have a LLMD. I am very educated on the use of the herbs I'm taking. I didn't just blindly decide upon them. I'm not new to treating and have treated for several years.
I just don't know how to tell if this is a herx from the herbs or a medication side effect. The cardiologist and my PCP don't advice me on LYme treatment. So I'm on my own. I've already taken advil but the fever is still high.
posted
Maybe you'll know by tomorrow what to do. Do you think you could have gotten the flu or some other bug?
Keep us posted, OK?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Summer3
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I don't know. It's still at 102 on Advil. I feel really overheated. I spoke to a pharmacist and he said go to the ER because it could be the Florinef uncovering an undiscovered adrenal problem and lowering my ability to fight infection.
I'm not going to the ER unless I'm in life threatening danger. I just tried to stand up and all of my limbs (veins) are throbbing like they're filling up with too much blood. My BP is fine but my heart is at 95 resting even on the beta blockers. Last night it was 50.
Hopefully I'm just adjusting to the meds. I will consider urgent care tomorrow if I wake up really sick. Or who do I call about this? The cardiologist again? I'm such a PITA this week with them.
posted
Buhner recommends boneset tea. 1tsp hot tea steeped for 10 mins. Three times a day.
It helped me through an enormous Babs herx. With fever chills ect.
I would still seek medical advice due to your cardiac issues and medications.
Don't feel like a PITA it's their job. You are just like any other patient.
There is probably a doctor on call after hours? Maybe you could some advice from them?
I am sorry you feel so bad. The boneset tea is in his book healing lyme.
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Summer3
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Well I already called them this week about strong rebound arrhythmias from Toprol each afternoon. They weren't getting back to me about changing the dose and I could feel for days that something was wrong. I don't call doctors for nothing. Then I completely fainted during an arrhythmia which hasn't happened. Heart palps are normally a separate issue and I can prevent fainting lately almost every time by lying down. Of course my EKG when I got there was normal and I felt like a hypochondriac.
The Toprol dose was increased from that appointment and Florinef added because I kept reminding him that when I'm not stressed in a doctor's office and I'm about to faint, my BP is 85/45. Now I'm having problems again.........ony two days later. But it could be the Cumanda/Mora. This doctor is completely Lyme illiterate so I don't even want to call him unless I'm positive that this is a persisting side effect that is legitimately dangerous and will be detected if I go in.
posted
Hi Summer! If you don't mind my asking, what are you taking the Toprol for? I have tachycardia, mvp and orthostatic hypotension.
Toprol can further lower your blood pressure which is likely already low from the Lyme and friends. I had to try several beta blockers before I found one that was the least oppressive to my blood pressure.
I was also on Florinef for a period of time and I HATED it! It made me feel awful! I discontinued it, went back to my cardiologist and told him no go on that medication. I now simply eat a diet higher in salt and drink the reduced sugar G2 Gatorade for the potassium which we are also likely deficient in. It does a decent job and without the god awful feeling from Florinef.
Have you ever worn a holter monitor for a period of time for your cardiologist?
I don't know if you're herxing or not. If you continue to have palpitations and feel extreme discomfort, I would head to the ER. I know it's cliché, but better safe than sorry, especially when it comes to the heart.
Your cardiologist is there for that purpose. Try paging the doctor and let them know how you're feeling and exactly what's going on. You're not a hypochondriac and you are their patient. I often feel the same way you do (that I'm a PITA). I have to be on deaths door before I will go to the ER.
Please let us all know how you're doing and I'm praying you have someone with you.
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lax mom
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When I had a fever of 104 with severe chills and my temp wouldn't go down with Advil, it was because I had a severe life threatening infection in my blood.
Who cares if an ER Dr thinks you're a hypochondriac. If you're that sick, get some help. There's no need to suffer.
Rumigirl
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posted
quote:Originally posted by lax mom: When I had a fever of 104 with severe chills and my temp wouldn't go down with Advil, it was because I had a severe life threatening infection in my blood.
Who cares if an ER Dr thinks you're a hypochondriac. If you're that sick, get some help. There's no need to suffer.
Yup!
Several thoughts: it sound to me like you raised the Florinef to high too suddenly (from my experience). Maybe try going up by a 1/2 pill in the pm. But right now, probably don't add a second dose until this clears. (THis is NOT medical advice, just my knowledge and experience---call your doc).
What you describe definitely sounds like that is SOME of the cause. But not of the fever though. That is more likely either a bad herx, or an infection. Which maybe does have to do with taking the Florinef without taking Cortef (rx) to address the hypo adrenals.
But the fever is worrisome.
Herx-wise, try a coffee enema or two to detox. That helps right a way.
It sounds like a combo of things here. But definitely get a hold of your cardio pronto!! Don't worry about bothering him.
And you probably should go to the ER pronto, also. Let us know how you are.
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Summer3
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Thanks for the replies. I still have the fever but it's a little lower (102) now. The reason I'm avoiding the ER is because I've had this happen MANY times before (high fevers/flu). The last time it happened "coincidentally" I had just began Cumanda for the first time so I'm fairly sure that's what it is. I actually run a low fever most of the time (100 or so).
The higher fever just worried me more this time because it's an unusually strong reaction for me when I'm only on herbs (abx I react like this all the time).
The new cardio meds in the mix make me nervous too. I know nothing about heart meds. I've never taken any medications in my life until recently and it was only abx for Lyme.
I'm really conflicted about taking Toprol and Florinef, but I need a way to stop the fainting and I had already tried the herbal route for over a year with iicorice, ashwagandha, salt, rhodiola, increased fluids, etc.
I didn't raise Florinef yet. I'm on 0.1 which is what he gave me as my starting dose. The Toprol is for SVT, PVC's, PAC's, atrial runs, sinus tach, etc. All benign rhythms picked up on an event monitor, but I get very close to fainting many times per week. Last week I actually did faint in the car (parked) during an abnormal heartbeat episode. Usually though, my fainting is a separate symptom and occurs away from the arrhythmia's.
I thought the same thing about Toprol. I have no idea how it's going to raise my BP when the majority of people that take it are taking it for high blood pressure in order to lower it.
He said by lowering my heart rate which used to run over 100 even at rest, my BP will raise but that didn't happen the first week and I had really strong rebound palps. So he raised the Toprol dose by another half pill in the a.m.
One worry I had when I got this fever out of nowhere is Florinef lowering my immune system and "ability to fight infection" as listed on the handout they give you at the pharmacy. Although I have a nearly constant low-grade fever of 100 for he past many months, the higher fever started right after I began taking Florinef. However, I know a lot of LLMD's use Florinef and think it's okay and safe to take with Lyme. Is the handout referring to a higher dosage?
posted
I'm glad to hear you're doing okay this morning.
Have you thought of changing the Toprol? The near fainting episodes sound like me a few years back.
I don't remember what I took at first, but we tried, under careful scrutiny, several combinations. I ultimately wound up on Inderal LA and a very low dose of Xanax. The Inderal didn't lower my blood pressure as much and reduced my palps quite a bit. The Xanax calmed the nervous system and in turn slowed my heart rate down some.
For the blood pressure, he kept it simple and told me to increase my salt intake.
I would definitely call the cardiologist and let them know how you're feeling. I felt awful on the florinef.
And when in doubt, go to the ER. You are not crazy or a hypochondriac. You have a problem and need help. Your fever might indicate an infection and with that you may not be getting a good read on the effects of your new medications.
Hope you get some resolve today.
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lax mom
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I could only tolerate Florinef for 2 days.
Can you stop everything except the Toprol? Then add back 1 thing at a time, only after you know it's not causing any problems?
Summer3
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Well I was doing okay this morning (on advil) but now at the same time, late afternoon, I'm getting the aching pain in my entire body again and the fever is returning despite aspirin this time.
I think I will try to stay on for a few more days but if it gets worse or the fever doesn't stop I will definitely call the cardiologist.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Summer3
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My BP is okay..........93/57. I did end up calling the cardiologist today. I spoke to a different doctor than the one I see and he said the fever is probably not from Florinef.
I hope that's true. I also hope it's okay to be on Florinef in the absence of antibiotics to counter any potential immune suppression. I do take herbs in fairly high doses.
lax mom
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I know this won't be a popular response, but I feel that this is dangerous.
That's what drives me crazy about this disease. People are willing to take such risks. If I did that, I would be dead.
I had a "textbook" Babesia flare/Lyme herx or could easily have been the flu...but it wasn't. It was sepsis...and I wasn't on IV.
Your immune system can be so weak that infection goes into the bloodstream with no symptoms until it's an emergency.
There is no way to know if something is a blood infection, some other serious issue, a flare, a medicine/supplement side effect. It's just not possible to guess.
posted
Summer, I agree with lax mom. It sounds dangerous to have a high fever for days. You might have ideas about what it is, but you won't know without bloodwork. I would really get it checked out in the ER.
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Summer3
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Well that's why I called the cardiologist and told them today that I have a high fever, it's not lowering well with Advil, and it started the day after starting Florinef.
They told me nothing. Just that "it's not from the Florinef." He didn't say anything about going to the ER, urgent care or even scheduling with my GP.
I agree. I can't tell if it's dangerous. The problem is neither can doctors apparently. That's why I'm worried. How can they tell if I have a blood infection? What specific test? A CBC?
Going to the ER is not going to be helpful here. I'm in a VERY rural area and quite frankly, the hospitals suck. The last time I went (for a heart issue) they did absolutely nothing. Plus the stress of my germ OCD in the ER will put me over the edge.
Rumigirl
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Wow, I think think that you should definitely go to the ER---WITH someone to help and advocate for you. I understand that ER's can be way less than helpful too often.
It's either that, or is there a doc that you have that you can call on an emergency basis? But you would have to get blood tests anyway to see if it's sepsis or not, for instance.
But if you had a doc that could either meet you there in the ER or be available on the phone, that would be MUCH better. You get much better care in that case.
The doctors CAN tell at the ER if it's dangerous or not, or if you have sepsis or not. BUT, it would be far preferable to have a doc call them and be available for them. If it is an LLMD, just don't
tell them that he is treating you for Lyme maybe. Just say "infections" and pretend that you don't know what infections.
Don't wait and try to do this by yourself. A doc to answer to would go a long way. Plus, he/she could suggest tests to do, etc.
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GretaM
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A fever lasting this long that has not responded to an anti-inflammatory warrants a trip to the ER.
If it was a simple cold or flu virus it would have passed and progressed to other cold or flu sympsomts by now.
I think you should seek medical help as soon as you can.
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Summer3
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I think I may go to an urgent care center. I'm trying advil one more time in a higher dose and if it doesn't go down, I will probably go. I woke up with a fever of 103.5. The advil had worn off in the night.
Summer3
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Now it's my turn for a response that I know won't be popular. I just can't bring myself to go to the ER or urgent care. I keep thinking I can handle it and I get the fever down to about 100/101 and then I fall asleep and wake up with 103+. I know this is stupid and I should go, but I can't. I have no trust for doctors anymore and going to another office is going to expose me to even more germs.
Another reason I don't go is because I don't want to be on antibiotics again short-term and then relapse when I go off. That's very upsetting to me since I no longer have long-term abx access. So I'd rather hold out and utilize herbs since those are something I have full access to (unless my financial situation becomes any worse than it already is). I know that if I go to a mainstream doctor they will say it's just a virus or unrelated to the Florinef AND "chronic" Lyme which they don't believe in.
I have not known anyone to have positive experiences with the ER here. My dad died in the ER from their negligence while he was having an indisputable heart attack. They wouldn't call a cardiologist because it was a holiday and they didn't think it was important enough that the cardiologist would come in for it.
I'm very sick from this fever. I'm also very worried, but I think I'd rather take my chances at home because I have no faith in doctors' ability to help. Every time I call one they don't know what to do and they don't grasp the seriousness of my call. I don't call unless I'm having a very strong problem. They tell me to keep drinking fluids, salt and take OTC products. The cardiologist I spoke to last night gave me no advice. The pharmacist was more helpful.
So I have told a few family members and friends that I'm not feeling well and that I will keep checking in with them. I haven't been able to eat or drink much due to the swelling in my throat so that's my goal for tonight. I also need to be more careful about not letting the advil wear off. I avoid tylenol because I've always had elevations of liver enzymes (unexplained). They actually were going up pretty high the last time I took florinef over a year ago.
The cardiologist does know I self treat Lyme. The problem is he is completely unfamiliar with herbs. Even simple ones like licorice. So he's no help in that regard. He said "he doesn't understand the purpose in them."
So again, thanks for the advice and I know that all of you are right about going to see a doctor, but my mindset is that they haven't helped me at all in several years and I've continued to get sicker. I don't think going to yet another mainstream doctor who doesn't believe in my condition is going to do anything but aggravate me further and expose me to even more illnesses.
I also just realized that for the past several months (since going off abx), I have had these types of severe illness/fevers every 3 weeks like clockwork. So it is most likely something cycling.
posted
Summer, your ER sounds awful. How dreadful that your Dad died there due to their negligence.
I'm concerned about what might happen if your temperature gets even higher. You may not be able to call for help. Is there anyone locally who could physically call in to check on you every day?
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lax mom
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Hopefully your family will check on you in person.
Summer3
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Thanks. I'm super stressed out tonight as everyone can probably tell. It's when I feel like this that I start wondering what if this isn't Lyme? What if the reason I'm losing weight and having fevers all the time is really cancer and that's why I don't improve with Lyme treatments?
I guess it doesn't really matter since cancer prognoses aren't much better than Lyme............just stressed. I don't know how many more years of feeling sick like this I can take. I was so upset that I went to a mainstream cardiologist just for a few clear-cut symptoms in his specialty and I'm having trouble even with that treatment! It's not effective like it should be.
Why doesn't anything ever work for me like it should? Advil doesn't even stop my fever!
CD57
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I can't stand this cardiologist -- they are notorious, along with neurologists, for being total ^*%**)&*. This is not helping the situation.
Can you get a new one when this hurdle is over?
I think that you should go to the ER also, look at it as a short term fix and that's all. It doesn't mean you are weak, it doesn't mean you won't get better, it doesn't mean you have cancer....it just is a place to go to do rule-outs and get some quick help to address this little issue. Then you can go back to self-treating?
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Ellen101
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I know when my kids had fevers the ped had me alternate with tylenol and motrin. Motrin every 8 tylenol every 4. I think we all worry at some point that perhaps we are not dealing with lyme but something else that has been missed. Hope you feel better soon!
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Keebler
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- Ibuprophen (in Advil) can make things much worse all over the body by constricting blood flow and tightening blood vessels. It can cause kidney failure. But even if it does not, by constricting blood vessels, all kinds of other problems can happen.
First thing might be to see how that could be eased up a bit.
Acetaminophen can cause all cells to block glutathione and become more toxic, also very dangerous in many ways.
Detail about both in set below, along with some things that may help ease symptoms. MAGNESIUM might be good to consider to help the vessel constriction from advil, be sure you have enough magnesium. Detail in here about that, too:
posted
I had fever for months. You should be treating Babesia agressively. Also parasites, Albenza, Alinia, ivermectin. Something go thin out fibrin. Interface plus or heparin. Pulse artemisinin and crypto. Good luck
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Summer3
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I am trying to treat babesia with Mora, Cumanda and I also have A-BAB but couldn't handle that for this pulse.
Starting to think this is either strep or an allergy. My throat is very swollen and I can barely swallow. I go to my doctor tomorrow. I will probably try some ACV in the meantime.
I also took some zyrtec in case it is an allergy. Zyrtec or Benadryl usually work well for me.
posted
If you do not have a local doc and are unwilling to go to the ER then you need to order some bloodwork online. A CBC with differential and maybe sed rate would at least give you some basic info. And a BMP (basic metabolic panel) or CMP (comprehensive metabolic panel) could also be helpful.
Is there a labcorp any where close? If not, will the hospital lab do blood draws for a small fee if you order the tests online?
I do not have insurance, but do routine bloodwork 1 or 2 times a year. I pay $75 for an annual Life Extension membership and then they offer a blood panel that basically combines a CBC and CMP that costs around $42. If you get the blood drawn by labcorp there is no additional charge.
You really need to set up something like this so that you can do routine bloodwork in situations such as your current one.
Bea Seibert
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Summer3
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So I have strep. My fever got up to 104.8 today. It was very scary. I have to go back on abx which I was really trying to avoid. I've been off them for months and using only herbs. I just don't want to improve Lyme symptoms and then relapse hard again when I stop them.
lax mom
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Summer: Whoa! 104.8 my gosh that's high. You must have been MISERABLE!
I am so glad you got it checked out. You will feel much better once the antibiotics are in your system.
I know it's not ideal for you to have to take the antibiotics, but thankfully, it's something you can treat quickly then move back to herbs. You don't want to end up with Rheumatic fever and have damaged heart valves.
I know how you feel. I'm on Cipro, hate every second of it, and am scared to death of it, but have no other choice right now. This is where I just have to accept that it's temporary and necessary.
CD57
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WOW i am glad you got this checked out. where did you get the strep?
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Summer3
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I have no idea. I don't know anyone which has it. I'm hoping the Florinef isn't lowering my immune system and allowing other infections that were latent to surface in my system. Just a theory though since I haven't had any illnesses except Lyme for over two years until the day after starting Florinef..............
I had fallen asleep, the aspirin wore off and I woke up with the 104.8. I took three advil and ever since then I've been much cooler but absolutely DRENCHED in sweat. It's disgusting.
I'm really upset about having to take abx. I don't have long-term access anymore so I don't even like being on them at all short-term because it just makes me more depressed to feel better for a few days and then relapse. I was trying really hard to maintain my symptoms without. Luckily this particular antibiotic has virtually no action against Lyme or co-infections so hopefully that won't happen this time.
Jane2904
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So glad you went and got checked out. Sorry that you have strep.
Hope you feel better.
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GretaM
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I am so glad you saw a doc.
I hope you're on the mend, strep-wise.
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Rumigirl
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OMG, that was a VERY close call that you had there!!! Please don't ever do that again. Thank God that you do go and get dx'd and tx'd.
Very, very scary indeed. At that level, you could have died or lost your brain basically. I"m so glad that you didn't do either one.
It really sounds like you somehow need (with our help) to figure out a better plan for yourself after this is over. I'm not criticizing you, but empathizing with you. There couldn't be much harder than this---or so it seems.
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Summer3
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Thanks Rumi. I've always tried to deal with symptoms and illnesses on my own (even prior to Lyme) because most of the time doctors have been of no help to me.
For Lyme and co-infections I have a pretty good plan based on Cowden and BW herbs. I have done massive research on all protocols so I'm not entering into anything blindly. So far Cowden herbs have been working the same as antibiotics did; preventing rapid progression but not improving anything. I think that I need IV antibiotics but that is not feasible financially right now so I need to make due.
I am really aggravated with the heart center. This is the second time that I called them knowing something was seriously wrong and they completely dismissed my concerns. Unfortunately, there is not much of a choice when it comes to specialists in the area. I may decide to go off the beta blocker and Florinef. I'm trying not to rely on Rx medications.
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