I'm having problems where I'm allergic to EVERYTHING (keep ending up in the ER with bad asthma) and I've gotten to the point where I'm afraid to put anything into me - antibiotics, supplements, food, you name it.

I'm trying HARD to JUST DO IT but most of the time I end up with a reaction OR just paralyzed and another day goes by without taking what I should.

I know this is extreme, but any suggestions? Anybody been through this? How did you get past it?

The answer is, yes, I have been there.

To further answer that, ALOT of people do not understand this, period, including lyme patients.

There ARE some people who cannot take antibiotics. There ARE some people who lickign an antibiotic, will make them ill.

There are some people, who when they take pills, remain sick. They don't herx and improve.

There are some people who are sick and better off as compared to taking antibiotics and being worse and worse.

Now: To top that off:

There are some people who take antibiotics and fear that they are allergic to them, when they arent. Because they are herxing.

There are some people who take antibiotics and fear that they are allergic to them, when they arent. Because they have lyme given anxiety.

BUT, they are few and far between. And that leaves you duramater, and that leaves me.

I was fully able to take abx for about 6 months. I took high dose abx and had NO problems.

I herxed, and I improved. I then found my way into a big mess and was switching my antibiotisc all around like crazy.

I have not been able to go back to antibiotics since. 250 mg of a single antibiotic will send me over the edge.

I went through THREE lyme doctors trying to find out what the problem was.

EACH of them said

1.) You're herxing.
2.) too much anxiety.

You know what I said?

HOGWASH. If I take an antibiotic at 6pm, by 630 pm, I am DEATLHY ill. Once it wears off? I am fine, but guess what? Its time for my NEXT dose, at which point, if I take that dose, I become sick all over again.

Now, how can this be, I thought. Considering that I used to take 4000 mg of an antibiotic PER DAY, did NOT react, did NOT get ill, but boy oh boy, I would

get slammed with my herx, and then IMPROVE and have SO much relief. HA! For any doctor to tell me I was herxing after only 250 mg of a pill, within a half an hour

WOULD MEAN MY BORRELIA GREW , instead of DECREASED. That doesnt make sense? Does it?

To be honest with you duramater, I'm in the same boat as you, and Im stuck.

Im not new to lyme, and surely not new to the antibiotics, but I simply CANNOT take them.

My problem ended up being mutiple chemical sensitivities caused by candida AND ALSO GERD. ( which will cause you to wheeze after you take an antibiotic, and think you arent breathing correctly, and have panic attacks)

My suggestion, really? GET THAT LLMD TO LISTEN TO YOU.

Evertyhing is NOT a herx. Get on some stomach medication. It just MAY save the day. Get on some strong anti yeast diet and antifungals. That may also just help you alot.

Then gradually, ever so slowly, add in some antibiotics. But PLEASE do not ignore me on the stomach acid issue. AND DONT LET YOUR LLMD DO IT EITHER.

It may help you also to take something for anxiety. Im not saying you're nuts!

But I can however say that I have been in your shoes. I AM in your shoes.

And to anyone reading this:

NOT EVERYONE CAN TAKE ANTIBIOTICS.

Period.

I think I'm just looking for support or "tricks of the trade" that people have used to get past their fears regardless of how grounded (or not) in reality they are. The reality is the meds/supplements MAY make me even sicker (which is hard to imagine give my current state of health) but the other reality that my LOGICAL side knows is that the meds/supplements MAY make me healthier. Unfortunately, my logical side is out of commission.

For example, magnesium supplements might help my breathing, but I might react to it. I really want to try it, but chicken out. The minocycline that was prescribed might help me overall, but everything might get worse. I really want to try it, but chicken out. You get the picture.

As an aside, these are not herx's that appear to be allergic reactions. My history is of actual allergic reactions (you know, asthma, not breathing, positive allergy tests) treated with epinephrine and mega-steroids so I won't kick the bucket. My herx's are increases in symptoms I already have (e.g., weakness, joint and muscle pain, etc). I've also been checked out (both ends!) GI-wise so its not acid/etc although good suggestions...

It's just that this time around, my usual allergies have ramped up infinitely, and now I'm afraid of everything. It's a perhaps understandable reaction but not very helpful for getting me out of this bed-bound state. Any little tidbits to empower the part of me that wants to try these things REGARDLESS of the reality of reactions allergic and otherwise? How have folks gotten PAST this paralysis in any form?

Thanks again.

hyperbaric oxygen therapy (to help calm the parasympathetic nervous system and increase oxygenation) There's a board specifically about this and LD somewhere on Yahoo.

addressing leaky gut syndrome (testing and info available through Great Smokies ).

Ozone sauna

Detoxifiers -- questran, charcoal, chlorella, detox tea, glutathione, sauna

Nebulized glutathione (or IV); nebulized selenium

Rife

homeopathy

ART testing

Marshall Protocol

I have several friends who are chemically sensitive and find it difficult or impossible to take abx. Walking the line between herxing, allergic reactions, killing bugs and doing yourself damage is very tough.

We have very rough allergies and chemical sensitivities and she herx's on vitamins.

She has had to go very slow on very small doses of anything..Finally is on IV meds and while we still have problems, the meds are working.

We can become overloaded with Lyme neurotoxin and no longer be able to process many things. I'm reading Desperation Medicine by Dr. S in Maryland. He is the proponent of CSM (cholestyramine) for toxin removal and reduction of symptoms. I highly suggest this book and protocol. I'm hoping to get an appointment with him.

I did learn after a particularly nasty bout with amoxycillin (rashed out like a strawberry) that I have asthma. I went to an allergist that got me all straightened out with the amoxy and she further tested me on the asthma. We got that and my regular seasonal allergies all under control.It was fantastic! If there is one thing you might be able to do for yourself, is to see an allergist. It helped me quite a bit and it might be one of the easiest places to start. She had me washing my clothes in ivory snow and washing me in really plain shampoo and soap to calm my body down for potential allergens there.

I think the first order of business is to calm your body down. And that may be as simple as changing your cleansing products. Then look at the foods you are eating - organic may be an option for awhile, minimal additives and no white food - as pure as possible. Work with your llmd about maybe stopping the abx for a couple of days then slowly reintroducing your abx and make sure you have a good probiotic in your regime. I wouldn't go all out on supplements right now, just keep it simple.

I'm philosophical about the whole herx thing as well - not everyone gets them and they are not the sole criteria for the meds to be working. And you certainly don't want to brave it if the med is doing more harm than good. Usually an allergic reaction will show up before a herx....

Is your degree in clinical or experimental psych? If it's in clinical, use your professional expertise on yourself.....what would you do if a client had this problem? I do that all the time to myself and I save tons on psychologist's bills LOL!
cootiegirl

What I AM doing for myself thus far is:
A. trying very small doses of things (when I can get up the guts).

B. have been vegetarian for 10+ yrs and eating organic food for 5+ yrs

C. used tide free detergent for a while, switch to all free (no dye/frag etc) in very small amounts

d. have all those allergy cover thingees on pillows/mattress

e. air filter

f. massage, chiro, acupuncture when i'm strong enough to get out of house (haven't done this in about 2 months though)

g. i DID take some Magnesium supplements (small amounts) the 3 times in the last 5 days (hey, for me, this is a major accomplishment! something new).

h. talk to therapist by phone each week (body and mind are NOT separate entities!)

cootiegirl - lol, nope, i am not a clinical psychologist although now it might not be a bad idea, eh? i'm a cognitive neuroscientist specializing in human memory (i've posted replies to things about memory, SPECT scans, etc. as that is my specialty area). looks like i could have made a personally more useful choice in the past though - who knew?

anyway, all i'm taking now is (a) flovent for asthma (inhaled steroid, yeah, not great for lyme, but has changed my life asthma-wise, you couldn't pry it from my dying hands, let me tell you), (b) the wee bits of magnesium, (c) solgar multi-billion probiotics (about every other day since not on antibiotics currently).

i'd like to try glutamine (for food allergies, heard its quite helpful), a multivitamin (my diet is horrific and has been for months given the food allergies), maybe quercetin (also heard good for allergies) or glutathione (reduced or precursors, good for immune sys/allergy/sensitivities) AND of course, minocycline. i've NOT had problems with doxy before so does that mean i won't with mino?

again, thank you all and i definitely look forward to more words of wisdom that will help me get these things from my "to do" list into my body!

Um, no. Mino has excellent tissue penetration, better than doxy, and thus may cause more die off.

Also I've learned that you can be doing pretty well on one med, then switch, and have a lot of die off again, no matter what the med is. The bugs seem to build resistance quickly, and find new hiding places.

I can't remember what your protocol is, but be sure you somehow eventually (sooner is better) address coinfections.

Also check out the ozone sauna stuff at http://flash.lymenet.org/ubb/Forum1/HTML/026948.html
I'm putting one together myself, but had one of those "loss of executive function" herxes and haven't done anything but get the sauna delivered (the cheap ebay one, no ozone generator yet)