needing your support tonight

Hi gang,

I could really use your support tonight....

The past few weeks have been absolutely awful. I've endured massive headaches to the point of feeling my head pulse in sync with my heart rate, increased allergy symptoms, and panic attacks (so bad that my pupils look as though they've been dilated by an eye doc).

It came to a head when I took the first generic 100mg diflucan that my doc's rx'd last night. Generics often trigger the allergies. A few hours later, my lips began swelling, and the bridge of my nose (between the eyes) puffed up, teeth impressions on my tongue and inside my cheeks.

I've been taking benadryl off and on since last night, plus the allegra-D that I usually take once a day. I've also been texting back and forth with my naturopath (who's out of state right now) and she's been advising me on supplements to try. In fact, she called the ARNP and just had all three of us on the line at the same time so that I could hear what the ARNP had to say.

I've been thinking my symptoms were an allergic reaction to the diflucan (which I'm not taking any more of for the time being). The docs think it sounds like a hard herx. I love my docs, I'm just not sure what to believe right now. The doc's listed off four supplements that I have on hand and told me to take them every 3-4 hours and they'd act like a benadryl injection without the cotton mouth.

I was so close to going to the ER at 4am this morning and again a little bit ago before our little "conference call". I'd swear this is the beginning of anaphylaxis, which I've dealt with before... not fun. But, like so many others here, I'm now working for myself and I haven't picked up any insurance yet. I'll definitely be applying for disability in the near future AND look at some of the cheaper healthcare.gov stuff for emergencies.

If this is indeed a herx.... geez, it just sucks ! And as I told my docs, it's very difficult to restrain yourself from calling 911 when you have all these symptoms AND you're single, you live alone, and you have only yourself to rely on. That increases the "degree of difficulty" associated with lyme by 100. They can relate to the lyme symptoms but, they both have husbands and family to lean on in emergencies. I don't have that.

These are the times when I start to feel suicidal... like this sh** is never going to end... like I'm just going from one disabling day to the next.

:(

Post Edited (sknight) : 3/15/2014 5:58:33 PM (GMT-6)

thanks Trav,

I have allergic reactions to herbals too. Homeopathy and essential oils have been my primary treatment options. And no, I don't detos well... I have the MTHFR screw up. So, I do epsom salt baths, coffee enemas, water enemas, fruit smoothies for the enzymes, enzyme supplements, and just today tried activated charcoal recommended by my doc. The diflucan I started off with was 100mg 1x/day.

I am a caffeine addict so, that's already in the equation. Adrenals have been tested and were found to be severely depleted even two years ago. I'm on zoloft (4 years), & ativan as needed (4 years). I believe a little chemical assistance isn't a bad thing, just like you.

I've never tried kefir... is that like a probiotic? Cuz I'm also on massive amount of probiotics.

I'm starting to wonder if it's not a herx after all..... I've done three water enemas today and each one has greatly relieved the anxiety and panic attacks. So, that has to be from toxins being reabsorbed in the bowel, right? And I think adding the supplements that the docs recommended have helped too.... next dose is an hour from now.

It's beginning to sound more like a herx, especially since the enemas are helping. Many swear by coffee enemas, have you tried that? They say that it really pulls the toxins out.

Is there a reason why you aren't treating your adrenals or the MTHFR?

Yes, kefir is another type of probiotic, although a pretty complete one. Here is a list of the types of healthy bacteria that are generally found in kefir, just so you can take a look if you wish:
www.culturesforhealth.com/milk-kefir-grains-composition-bacteria-yeast

Hang in there!!! Is there a face-to-face support group in your area that you can go to? It would likely be good for you to go to a few, just to connect with others in your area that are dealing with these same things. Who knows? You might even find a new friend there! Some have arranged meet ups from this site as well.

no I have not worked in 6 yrs. lol, my new day job is research on the newest treatment for lyme disease. I wish I so could get my master's in nursing because I am in school now.

I am so sorry you had to resign from your job. I worked for 22 yrs, and would love to go back but I don't see it happening in the near future, altho there are alot of jobs out there for nurses on disability, case management, internet, so forth, but I am just too sick to do any of it. i miss doing something worthwhile, helping people, being busy. I was always a hyper get it done person, and I hate not being able to feel I am making a contribution somehow to society. it makes me sad. I showed horses for 30 yrs, took care of them now I only have one horse boarded being taken care of and I may have to sell her. I am just thankful I can feed water and empty my kitties litter boxes. this disease is like a thief in the night. it robs you of everything.

Sorry your having a hard time. Times aren't easy but one day it WILL get better. You gotta believe that, no matter how tough it gets.
I hope that it was a herx and you start feeling better with detox .
Thinking of you and hoping for feeling better.

Oh, and I forgot that my blood was positive for the MTHFR mutation. So, I will have increased toxin loads and increased allergies due to that, if nothing else.

skynight - I have never written to you before, but I am so, so sorry for what you have been going through. I sincerely hope it all resolves really soon!!!

my friend has an anaphylactic reaction nearly every year - she is extremely allergic to ALOT of foods - whenever she has one she gets an epipen injection every couple of hours. I just wanted to mention something - the last time she was in the hospital they discovered she was allergic to benadryl, which is why she wasn't getting better. Just bear that in mind, since you are super sensitive to stuff. She is actually allergic to the inactive ingredients that are used to bind the tablets.. Now she takes Benadryl liquid. I am not saying this can be the case with you - but I wanted to throw out the possibility.

I will keep you in my prayers.

Hi Chapelle, I have thought of that. My ARNP has a grandson who's allergic to benadryl, or the binders / fillers in it. Liquid benadryl might be a good idea... even though the benadryl tablet has been helping a bit.

Hi Trav, I'm hanging in there but, still not feeling very well. Sleep for about 5 hours, wake with the brain swell headache and difficulty swallowing... take the supplements the docs recommended, 20 minutes later I feel a bit better, sleep for another 4-5 hours and repeat.

I'm thinking I'll make a trip down to the local walk-in clinic and see if I can talk them into a benadryl injection. And possibly a wee bit of a short cortisone taper. I know steroids are the opposite of what you want when you're dealing with lyme. But, I have to get this stopped in order to live another day to fight the lyme.

I take phosphatidal (sp?) serine to help with the MTHFR process. Tried a B12 injection once and everything got dramatically worse for several days.

Sknight said: " I have to get this stopped in order to live another day to fight the lyme."

So true!! Do what you have to do in order to get past this! Just be aware of what it does to the body and work to counteract it as much as possible. Best of luck with whatever route you choose.

And let us know how you are doing!!!

headache, brain swelling feeling is getting worse.

:(

Only you know how you really feel - no matter what any doc tells you!!! Even herxing can turn life threatening for some!!

I do hope that today is a better day for you though!! If not, I would say to be sure to stop ALL things that could be causing this reaction, wait until the reaction has completely stopped, then choose your course of action.

sknight,
Hope you're doing some better today. I was dealing with awful headaches for the past month since starting on doxycycline. I switched from that to other meds yesterday and woke up with almost no headache today. Who knows yet if it will come back but I'm going to enjoy it while I can. I do find that going with my gut feelings on treatment seems to be a good idea so trust your gut on what to do and not to do...you are your best patient advocate.
As for the panic attacks...if you can take flower essences try Bach's rescue remedy. There are also some with Botanical Alchemy that have helped me with panic when nothing else did. If you can't take them or if they don't work, look into tapping. It's a method of tapping on different meridian points and seems to really work for a lot of people. If you want more info on it or the flower essences you can google them or let me know and I can give you links to some websites.
my prayers are with you,
Pearl

I don't know what state you are in, but go to healthcare.gov and find out who your providers in your state are, then call one of the local offices rather than signing up online. I'm a conservative also and really did not want to go on "obamacare", but I lost my job and COBRA was going to be almost $900 per month. Without tax credits so was obamacare, but by calling our local Blue Cross office I was able to get a lot of good information about how all this works. Because I'm on unemployment and my income is drastically less than it was when I was employed full time I was able to sign up and get a silver plan for less than $200 per month. I could have gotten bronze plan for less than $100 but the deductible would have been way higher. (There were other plans that were HMOs, but we don't have a lot of providers in my state.) If you make less than $62000 per year you can get the tax credit. Your discount will be based on your 2014 income. It has to cover pre-existing conditions. If your income changes you may wind up having to pay back some of the premiums when you pay 2014 taxes, but if your income goes down you will get even more of a tax credit. I don't want to get into a political debate either and I am not a fan of obamacare, but since it is out there and you will be penalized if you don't get healthcare that conforms, you might as well call someone. At this point you would not be covered until May 1st, but go ahead and call before the end of March. If you don't get signed up before March 31st you won't be able to unless you have a "qualifying life event". My thought in signing up was I can pay for it now and have coverage until I can get a job and hopefully get back on an employer plan or I can pay a penalty later. There are short term insurance plans out there too, but they don't conform and don't cover pre existing. I really do urge you to check it out, but the girl I talked to said if you call a provider directly they can get you set up then they can make changes and answer questions...if you go through the government website then you wind up on hold forever and your provider won't be able to make changes for you.
It won't hurt to at least check it out.