LLMD switched me to flagyl very very gradually a week ago. I am at 1/4 dose per day now. I continue to get weaker, it seams, by the day.

I had a hard time holding my fork in my right hand tonight.

It is so frustrating dealing with an LLMD 1000 miles away! I read about people having 2nd opinions, etc. I use Dr. C in Mo. But actually maybe I need an opinion face to face. It is just so hard to travel by myself now.

I just want to cry. What would you do? (After crying.)

(Thanks.)

WATCH YOUR DIET.

Do you get tired after eating.
I get very tired and severe burning in my feet after eating food.

Sometimes its will all food not just carbs.

But the worse offenders are sugar and bread.
I have all but eliminated those from my diet except for a wrap. Im pretty sure that had less carbs then 2 pieces of bread though.

So my diet now is eggs in the morning with peppers and onions and lettuce and chicken for the rest of the day.

Its been difficult but I know how I feel after eating bread or sugar.

I go right to sleep and then I wake up and want to die!!!!! I feel all brain and body swollen and depressed.

There are so many on this board like you.
Dont give up and really watch what you eat.
I cant even handle large portions.

This is coming from a man who used to be 250 pounds and ate 2 bowls of sugar cereal with more sugar on top for breakfast and snack!!!

I have lost most of my desire for food except for spices.

Something about this disease it just makes you not care or enjoy anything!!!
 

I'll tell you what I have done-cry. Go ahead, I always feel better afterwords.

Then-don't give up.

My first LLMD (ILADS) I stayed with 7 months. I did 2 months of doxy then 6 weeks of mepron/zith then a month of ketek(but only 400 mg) then back to zith/mepron for 4 weeks then back to ketek (again, not enough). Had thrush problems that were not adequately treated. I continued to get worse.

I hope that adds up to 7 so I don't have to go over it.

Along the way I found this board and thanks to the good people here got lots of ideas and found a new LLMD.

His tx is light years ahead of what I was getting. He doubled my ketek and added nystatin first visit. Thrush is gone. Lots of supplements and addressing mercury toxicity. Then he added in ceftin. Next replaced the ceftin with IM Bicillin.

After 3 weeks of twice weekly Bicillin I herxed too much. So I had to take a 10 day break but now I almost ready to start again-this time once a week, then will go to every 6 days then 5,etc. I have a gut feeling that IM Bicillin is really going to help me.

Also, I am supposed to add in avelox for Bartonella.

I don't mean to run on about myself, only to let you know there are alternatives. I highly recommend the taped presentation of Dr J B available at www.lymepa.org for $12. It's 90 minutes of how to treat Lyme and TBD. It will help you become an informed Lyme patient.

Are you taking only Flaygl? I've read lots of times how difficult Flagyl can be.

When herxing gets too much for me I take a break from meds. Just what I do, of course, you should check with your doctor.

Chin up!

Janet

Also flagyl is very very liver toxic -- my hubby can only take 1/4 pill daily and can only do that for about 2 weeks before needing a break.

Talk to your LLMD and ask about taking a short break from antibiotics. Maybe your body just needs to clear out the toxins to help you get your energy back.

Good luck,

Bea Seibert

quote:

---

Originally posted by lymeHerx001:
Something about this disease it just makes you not care or enjoy anything!!!

---

I agree. Sometimes I feel like lyme has attacked the part of my brain that allows me to enjoy myself. My sense of wonder seems to be gone, and I'm emotionally flat sometimes. Lyme robs us of our joy factor at least it did in my case.

aliyalex - I cry too sometimes. It's only natural when we feel so bad. Crying is a normal part of my herx cycle, maybe it is for you also. Keep the faith.
 

Janet, your info is very helpful. I will order the tape now. My LLMD has me on nystatin and difflucan. When you said not adequately treated, did you mean the ketex was not bacteriatoxic enough?

I think my biggest frustration is not knowing if this is just MS symptomology getting worse or if it is lyme not adequately being addressed. Am I saying this clearly? The fear factor gets involved, big time.

I truly believe that it has been lyme all along since the duckdocs looked atr me like a deer in headlights when I described my sx - losing circulation in my hands, dry eyes, years later optic neuritis. Many docs said no MS even after a brain MRI, which was normal. Then I insisted on a neck MRI and they found one plaque in there.

That was 3 years ago and there have been no more plaques, but now I can't walk unassisted and my hand is beginning to curl up.

I hate to be such a pain with the LLMD calling every 2 to 3 weeks. But I don't know what else to do. Don't know what else he can do, either.

BTW, just did a B-12 injection and ger bloodwork regularly. Thanks for the thought. Don't want to leave any stone unturned.

Thanks for the time and input. I really appreciate it.
 

I've tried several ABX, but can even get past a couple of days without weakness / exhaustion / breathing probs.

I know Alpha Lipoic Acid helps me feel better, and it helps you detox mercury, but there is a right and wrong way to take it. I've probably been taking it the wrong way, but I ordered a book to explain it.

Folks on this site recommended it: http://www.lymebook.com/mercury

Taking a break from the ABX and focusing on getting the toxins cleared out might do the trick!

Hope this helps.

- JB

After 6 weeks of mepron and art I am afraid of making the babesia worse.

Thanks.
 

>No, I mean the dose was half what it should have been.

Bacteriostatic- stops (static)

Bacteriocidal- kills (cidal)

I think my biggest frustration is not knowing if this is just MS symptomology getting worse or if it is lyme not adequately being addressed. Am I saying this clearly? The fear factor gets involved, big time.

>I can understand how that is frightening. Can you tell us more about your bloodwork?

Any positive Lyme tests or co-infection tests?

Any bloodwork to support the collection of symptoms called MS (if u google MS you will find plenty linking MS to infectious causes)?
 

I go to Dr. C as well. I've been on his protocol for most of 10 months. Last month I had an unexpected surgery and I was put on IV Flagyl, Gentamycin, and Cipro...boatloads of Flagyl then oral flagyl after surgery....500mg TID (three times daily)....this after not being able to get above 1/2 a tab of 250 mg in Jan. and Feb. of this year.

I have never felt so bad. I have been dizzy and have had drenching night sweats ever since surgery. When I think it's a herx it's easier to get through. You've been on so much stuff. You've got to be herxing...maybe a little toxic too. If you have Dr. C's protocol you know what has to be done for detoxing. I found the big doses of vit. C too irritating for my guts but found ground flax seed to keep things moving on that end.

To get a good sweat without a sauna take your hot bath, then wrap up in a couple of heavy blankets, boy does that work for me! Maybe it's really hot where you live and that takes care of it.

I sometimes feel like Dr. C is the only Dr. I can count on, but he is so busy I hate to bother him. This past week I finally did a phone appointment. This is with a nurse and costs about $20. The nurse gave me the time I needed. My face-to-face is the end of Aug. Sometimes it seems so far away.

It really forces you to take one day at a time. Sometimes one minute...

Have courage. (That doesn't mean you can't cry.)

Bug

IgM:
18 kDa. +/-
22 kDa -
23-25 kDa ++
28 kDa +/-
30 kDa +/-
31 kDa +/-
34 kDa -
37 kDa -
39 kDa +
41 kDa +/-
45 kDa -
58 kDa +/-
66 kDa +/-
73 -
83 -
93 -

IgG:
18 +/-
22 -
23-25 -
28 -
30 +
31 +/-
34 -
37 -
39 +/-
41 +
45 +/-
58 +/-
66 +/-
73 -
83 -
93 -

Even tho the IgG reads negative, Dr C said it was positive b/c band 30 is now considered + for LB.

Q-RIBb was positive with 1:64. Positive for babesia and neg for ehrlichia.

Lyme makes much more sense b/c in my 20s my knees hurt and temp went down instead of up when I was sick, in my 30s an eye doc asked me if I had lupus or RA in my family b/c they were so dry, and in my 40s my mammograms showed enflamed lymph nodes that the doc didn't understand. Even as a child growing up on a lake in PA I had knee aches and feet burning and couldn't sleep. When I told my neurologist this he looked at me with that look and just a little quack quack could come out of him. Then he wanted me to go on chemotherapy for prostate cancer. Bye bye quacker...

Does this help? Thanks. Ilene (aliyalex)

It's been a while since I did the flagyl herx, but remember it was so awful, I was looking into hospices and visiting a support group for the terminally ill. Your question about MS seems to be for a real medical person, but if you do have Lyme and bartonella, the flagyl problems are to be expected. And alas, they may also go on for a while. Sorry.

Also, I just ramped up to full-blast rifampin and ketek. That would be rifampin 300mg/2x day, and ketek 400mg/2x day. It's blowing the bartonella off the map, which is fun to watch. But even with a ramp-up period, it does cause side effects like you described.
 

In a few months, you could run it again if you'd like and I'd be willing to bet those +/-'s would become ++ at least.

Flagyl is a real "killer"...it makes you herx like crazy......made me SUPER depressed, and it's just an all around bummer!!

Other than that, it's a great drug for Lyme!

I hope you are feeling better very soon.....maybe DR C could add another drug like zith to keep other bugs at bay????

He's the boss, and definitely knows his stuff. don't hesitate to call him or speak to his nurse when you're at your wits end. He's never too busy for a patient.

--------------
note to all: I'm having a really difficult time posting......can't spell anything write the first time. Everything comes out garbled! So please understand why I'm not posting much yet.

Love you all!

------------------
Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu
 

I am sorry you are having such a difficult time post surgery. Thank you all the more for posting on my topic.

When you can, will you tell us how you are doing? Thank your husband for the update and I am glad you are back home.