Sorry you are feeling poorly. I certainly hope you feel MUCH better REAL soon.

Sooooooooooooo..

You went to see that poor fellow who treats all those big old corn fed mules in Misouri?

Good for you!

I like "natural".

My shampoo is natural.

My veggies are pesticide free.

My cleaning products have been replaced with neat-o things like vinegar.

And even some of my panties.. when I wear them... are 100 percent "natural" cotton.. or.... "au natural".

But treating Lyme with no antibiotics .. especially after 2 years of being sick..

Is kinda like treating a broken leg with Pepto Bismo.

Just MY opinion.

I think "natural" has it's place.. and is GREAT in combo with other things.. and I go to the most "natural" things I can all the time....

But I have yet.. after nearly 20 years.. seen anyone be "cured" (IF there is such a thing)... using ONLY natural things.

The bad feeling from the antibiotics could be a "herx". This is normal.. IF it is a herx?

Anything that causes you concern should be checked out with your doctor though.

You may need to accept the fact you are ill and make arrangements to have additional care for the children? The more stress you are under. the harder it is for a body to try and recover.

This is NO easy row to hoe. Treatment can be as bad.. and much worse than the sickness itself...

UNTIL, it starts working for you.

Your biggest problem will be fighting time.

Everyone seems to want to rush through treatment... and move on... which is "normal".

But this rarely happens.

You have an infectious disease that has been allowed to take over your body for at least 2 years. It isn't going to be pretty trying to get rid of it now.

And it is going to take TIME.

Expect to get worse before you even can think about getting better.

Sorry it is this way... but we will be here to help you in anyway we can.

Once you get the spirochete loads down some..

Maybe then more "natural" things can be included in your treatment protocol.. and maybe then it will do you well?

Good luck and remember we are here for you!

We ALL think there has got to be an easier way and give up about three times a week.

Of everything I have read on this website, your post hits the nail on the head better than anything.

Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.

Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.
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You said that you did natural treatments for four years? And that the last two, you have been chronically disabled?

In my honest and crappy sometimes opinion, and opinion only, I think that means that the natural treatments aren't working for you?

I can't say "Oh you better get on antibiotics right now, or you are never going to beat this".

BUT i can say at least give them a try?

Set a time table? Maybe a year, or two, and if nothing, then go about what you want to do?

I do alternative treatments, BUT I did 18 months of antibiotics and got myself at a point where I can completely function without antibiotics.

I CAN however, relate to you with your problem of getting sick within a half hour of taking medicine.

Thast why I stopped! Into my eighth month of heavy duty antibiotics that NEVER bugged me at all, not even running to the potty,

I began to get sick within a half hour each and every single time I took an antibiotic.

Then it moved along to if I took an ADVIL I got sick.

It turned out I have leaky gut syndrome and candida EXTREMELY bad and my body was basically doing nothing with the other 10 months that I tried to gag down some pills.

SO.. I can relate to that!

I'm in no position to tell you what to do,really.

If one avenue doesn't work for you, try another. But honestly? Give the antibiotics a shot. It may be extremely rough at first,

but if youkeep running into getting sick every half hour after taking a pill

SOMETHING IS *PROBABLY* NOT RIGHT.

Dr. C gets into alternative and adjunct treatments too, he is not strictly abx, abx, abx.

So, what are you thinking of doing? What does your gut tell you to do?

What dose of doxy did you start with? It may be that you need to start at a lower dose and work up.

There are some "alternative" options out there. I'll e-mail you with some that are fairly close to you.

I absolutely need to take antibiotics. I do lots of natural things in addition. It gets worse before it gets better and you may need to lighten your schedule.

Ask your Doctor about starting with a lower dose. In my experience the symptoms you describe mean the antibiotics are killing a lot of Lyme and the toxins are causing the reaction.

I have been helped by the anti yeast diet, food lists at" www.wholeappraoch.com. The other thing that has helped enormously to reduce toxins and my herx symptoms are podi-patches. Do a Lymenet search to read about them.

Fasten your seatbelt, have patience and check into Lymenet often.

Wishing you the best.
hatnscarfs

I was previously quite healthy and always chose the natural route when health issues popped up.

During that 15 months I did all kinds of things, including getting my amalgams out, seeing a naturopath twice monthly, changing my diet, quitting coffee and deodorant, adding supplements, enzymes, and a weekly glutathione/ATP shot...etc.

All of that did have a positive effect, but I could not get past a certain point in my recovery, and I did not want to stay at that point.

Since I'd had Bartonella from a cat scratch in 1983, I asked the doc I was seeing for what had been diagnosed as CFS/Fibro, for bartonella and mycoplasma tests. She threw in a lyme test, and that's the one that came back positive.

I was shocked, as I'd had a negative lyme test about a month after I became ill, but in retrospect I can see that I was not yet producing enough antibodies yet to get a positive.

Antibiotics plus the supportive stuff has brought me back about 65% of the way. Also, once the lyme was diagnosed, the MD pursued my thyroid complaints that the ND and I could see like a blinking red light. My standard thyroid tests were always "low normal", but further testing proved that my thyroid was really struggling since contracting lyme.

So, for me it took not only holistic measures, but also antibiotics and thyroid meds to get some semblance of a life back.
Hard meds alone won't get you well, and neither will all holistic means.

You need BOTH -- the meds to kill the spirochetes, and the holistic regimen to protect your liver, control the yeast that the abx foster, detox your tissues, remove parasites, and nourish your cells.

I highly recommend that you read GiGi's posts here. You might also look into rife, saunas, etc., but you need to really kill them bugs and not waste a lot of time about it.

quote:

---

Originally posted by gottagetbetter:
I know that I can NOT be disabled from antibiotics. I have a hard time with getting soooo bad to get better. ~P

---

This is much the same. You have to go through to get through.

Please do your homework and read some of the things posted by "treepatrol." Tincup's little essay was perfect and I agree.

I'm a Texas girl too and I've had this crappy disease for 46 yrs. No one ever thought to check for Lyme!

I was dxd 4 1/2 yrs ago and took abx up until this past November. You won't have to take abx that long, but it may take a yr to clear the bugs.

Remember that if you don't kill the spirochetes, you will have lasting effects you don't want.

Rife, Samento, artemisinin all have their place, but I vote for the abx FIRST and for at least several months since you've had this awhile.

I'm also a patient of Dr C's. He's awesome, and without him I'd still be disabled.

Because Lyme and coinfections have messed up and thrown so many body systems out of balance you wll also need a lot of alternative healing therapies. I use reiki, accupunture, IV vitamin infusions,IV PhosChol, Epsom baths and a lot of supplements. I am considering rife and FIR sauna next.

I have had the help of an LLMD, Alternative MD and a naturopath. I have been fortunate in that my of these practitioners have been willing to work on a sliding scale. Ask for help it is out there.

I believe the alternative therapies are just as important as the ABX.

At first ABX is more important.........
as you recover the alternatives are at least as, if not more important.

I wish I didn't have to do the ABX but I feel with Lyme they are absolutely necessary.

I am not a Dr....... this is my experience and opinion.

I am still on ABX after 10 months..... I don't see going off anytime soon. I had several co infections and it takes time to treat. I continue my alternative terapies as I can..........

Do both!!!!!!!!

Peace and health,
robi

PS I know it seems overwhelming and you don't know where to start.

MY Suggestion:

1. Good LLMD and ABX

2. Probiotics

3. Low carb diet

4. Good muti vitamin (Iherb.com has many quality vitamins)

5.Epsom salt baths w/1-2 cups salts. Every other night for 20 minutes.

6.Exercise everday (well at least 5 of 7)DO NOT OVER DO IT.

7.Eat clean ..... organic and pesticide free food as much as you can. No sugar or poison sugar substitutes. Use stevia.

8.Think Positive........Lymenet is a great support for that. Even with all the bickering and icky things that go on here I still could not have survived this long without it. It is my source of unconditional acceptance. No one here thinks your crazy. Well, we all know Crime of Lyme and Tin Cup are crazy. But aside from them everyone is sane

9.If you smoke.........QUIT!!!!!!!! your killing youself and everyone around you.
Yes, I have an opinion about this.

Healing to you...........it will get better,
robi

He said that it is important to wage a war against the bugs in your system, but as you are doing it you need to have some sort of quality of life... I have learned if the herxes or "toxicity" get too much I back off on the dosage a bit....

Unfortunately you cannot treat Lyme without a bit of discomfort... And you may have to change the pace of your life a bit... That is one thing I will have to probably do the rest of my life.. I need to rest when my body tells me to, and I know I cannot do everything I would want to do in a day...so I pick and choose what is important each day..... Then there are days where I need to just rest period...and allow my body to reenergize....

I think the wisest choice to to remain on anx...I have done every single alternative route out there but truth is none of that can cure a Spirochetal disease.

ALthough its great to incoorporate many differnt alternative things as well.I believe to get better its not all western medicine, and you cannot do it with ALL Eastern Medicine either...you have to find the right mix.

3 days of TWO doxy 100/mg day; 2 days off;

3 days of TWO biaxin xl 500/mg day; 2 off;

then start the doxy pulsing cycle again. I'm still on this routine plus below.

9-04, dr. added benicar 20 mg/day..half am/pm. Another MD increased to 40 mg/day due to my diabetis urine micral being excessively high. Still on this 40mg/day.

1-05, LLMD added deflucan for yeast/antifungal....every other day; 1 pill only.

Dx 7-04; misdx for 34 years w/fibro, CFS, irritable bowel/bladder, migraines, TMJ, thryoid, painful periods, acid reflux, hiatal hernia, last year...diabetes 2, late stage lyme, sleep apnea/restless leg syndrome. dx/symptoms now total 30!

By the end of the first week I was in bed and was there for 3 weeks and believe me, I wanted to quit that stuff but knew if I was that sick that it was doing it's job.

I am not that sick now but still not able to do much. Hopefully you won't get that sick from the doxy. I have been disabled for about 3 years so was already very sick.

I would encourage to keep taking the doxy. I would hate for you to end up sicker because you didn't take it. From what I have heard Dr.C knows what he is doing. I will be seeing him March 10th for my first appt. and I am excited about it. It just gives me a little hope of getting better.

This is just my opinion and you have to do what you think is right for you. Hang in there.

Take Care,
Sapphire101

Edited to add....I just read your reply, we must have been posting at the same time. Yes, I have had lots of new symptoms since starting the doxy. I'm like you, I wasn't expecting that either but I will hang in there.

Snake oil salesmen will tell you whatever you want to hear to get your money...some of the stuff works for some people some of the time...you can do this stuff in combination with antibiotics if you want to.

I'm with Tincup on this one, do the antibiotics...follow Dr C's protocol to the letter. I have been symptom free for almost 2 years now, and that is a HELL of a lot longer than MOST (99.9%) I have met who have had Lyme Disease.

I don't mean to be harsh, but when I first found out I had this I couldn't find ANYBODY who was "cured." Since then I can count on one hand the number of people I know who have been symptom free for more than a year, and I have talked to hundreds of people who have this, over the internet, over the phone, and in person.

I am trying to scare you. I was scared, and it worked. If you read this website you will see case after case where people delayed treatment (for various reasons).

Most of the people who were posting to this message board when I first came here in October of 2002 are still here...you caught me on the right day...I pop in here about every six months to see how all my old friends are doing...I have gone on with my life.

Your name says it all. You gottagetbetter. You need to put your whole life on hold and focus on YOU. That is the only way you will beat this thing. It is inconvenient, expensive and generally a pain in the ass. But you have to do it anyway.

Matt

PS...you may want to check out my web page:
www.anapsid.org/lyme/matthewgoss/

A herx won't destroy your body. The spirochetes are what is being destroyed, lots of them. The toxins are creating your symptoms.

You simply have to be willing to get worse to get better. The longer you wait the harder it will be. Read my posts from earlier today and last night for some encouragement.

My Christmas ski trip was actually a week on the sofa. I could barely stand up. It was 3 weeks after switching abx and I had a massive herx. I survived. After that I started to get significantly better.

Now just 2 months later I'm leaving for my winter ski trip in Colorado (with my skis). I'm exercising again, I can think clearly 99% of the time. Last fall I could think clearly only about 10% of the time. I couldn't possibly have packed for a trip or gone on one.

I didn't want to take antibiotics either, but after doing lots of research (quickly), it was obvious I had to. I'm glad I didn't wait to start. I was getting worse by the day. This is a very serious disease.

I do lots of alternative stuff too but for me it is supplemental. Without abx I would have no quality of life now.

Lymenet has been enormously helpful in so many ways. There is a huge amount of information here. It helps so much to be able to communicate with people who are going through the same things.

Back to doxy; I did better with tablets rather than capsules. (less color and perhaps less filler). Now I'm taking bright yellow & orange tetracycline capsules. The only un-natural thing in my diet but it sure beats feeling the way I did before.

Any way you decide to go will be slow going and very up and down. But if you choose wisely you do get better. If you don't you will either stay the same or worsen.

Keep a journal it helps to figure things out.

The first herxes on abx are the worst, they do lessen as the bacterial load is decreased.

Old symtoms will flare during the herx and NEW ones will probably show up.

There are no guarantees, but with abx you increase your chances of getting better quicker. Without them, the odds are against you.

Lots of people have tried to do what you're doing, including me. I was all natural before I became completely disabled.

Don't let it get that bad, it happens quickly and coming out of it is much harder.

For one thing, his artemesia didn't touch our babesia. Babesia can be a reservoir for Bb (Bb parasitized babesia and can hang out there to avoid abx, natural and otherwise).

Nothing he had treated our bartonella.

His garlic did indeed help with candida, but there are cheaper ways to go.

I did like his Hepa Pro (?) but it didn't seem to do anything for the hubby.

Our experience was that he has some good stuff, but it's extremely expensive.

We've finally really gotten somewhere, after all these years, with a combo of herbal and pharmaceutical abx for LD/Coinfections, and natural and pharmaceutical detoxifiers and general health support. Has taken a year and we're not out of the woods, but making incredible progress.

One of the most painful herx experiences I had was on artemesinin, BTW; the first samento herx wasn't amusing, either.

Some people are indeed very sensitive to chemicals and cannot tolerate abx, or (if they are lucky)are sensitive only to specific abx. So be sure to consult with your doc about your experience and make sure it wasn't an adverse reaction to the drug.

All the best. I know how enormously frustrating and scary this all is.

Just editing to add that even the "natural" stuff I use, like artemisinin and samento, is pharmeceutically processed into a concentrate from the whole plant.

quote:

---

Originally posted by gottagetbetter:
Am I willing to possibly destroy the rest of my body to kill of this disease???

---

Herxing does not destroy anything. It is simply toxins being thrown off by the dying spirochetes. So you FEEL terrible. The keets are dying, but YOU are getting better.

All I ever had to do in order to keep myself focused on the future [after treatment] was to look at what Lyme did to my parents. That was motivation enough for me.

My father died of Parkinson's [I'm sure now it was undxd Lyme and/or the Lyme caused the Parkinson's...who knows?] The suffering was great for him and for his whole family.

My mother has had 3 major strokes and ended up in an assisted living home with no short term memory at the age of 73. Everything she loved has been taken away from her.

First she had to suffer the loss of her husband, after many years of deteriorating health, then she began to lose the quality of her own life.

I knew what my own future held for me. Thank God I was diagnosed before things got any worse. I've been disabled for 11 yrs. I've had Lyme for at least 46 yrs.

So please consider your future "P"....only you can make it better. And as you said, you've "gottagetbetter!"

Take care,
g

Everyone is right...you need abx. I do a lot of what Tincup does. Natural everything and I still have lyme. Before being diagnosed with lyme, I searched for answers with alternative practioners and no one could figure what I had. Finally, I found an MD who diagnosed me with lyme in August and shortly afater had my first LLMD appointment.

I too am a patient of Dr. C's and have been on abx for 7 months. Sometimes I think am I getting better and the answer is definitely yes. I'm doing a lot more and feeling better but am I cured, no. I definitely have a ways to go but when I look at my journal from last summer what a huge difference in symptoms.

One of the reasons I went to Dr. C is he combines alternative with abx and that is a good combination for me.