I basically cried myself to sleep last night I hurt so bad. I am on enough pain medicine until I should be in no pain! Instead I hurt more now than I have ever hurt and nothing seems to help.

Is there a turning point in this treatment when will I start feeling better? I don't know how long I can handle this being so sick.

Anyone got any suggestions of anything that might help me energy wise or pain wise? I just don't understand anymore. I thought when I started taking medicine to get better I would start getting BETTER and not worse.

Thanks,
Stacie
 

I just wanted to say that my heart goes out to you and 'things will get better'.

You are probably (emphasis on probably) having a herx reaction, but be sure to let your llmd know.

Otherwise I just wanted you to know I am thinking of ya.

I ended up in a wheel chair with no pain meds that were out there to give me some relief.( except at the er.. they gave me a shot of diluadid.. ahhhhh releif, until it wore of)

I said the same thing... I'd rather be just sick with lyme then sick sick like that.

I had to stop the Roc. ( a little to late IMO)

I am currently on 150m twice a day of Doxy. I like it. Sure there are herxes BUT nothing like when I was on the Roc.

My llmd is getting ready to up the dose to 200m. twice a day for the next 10wks. I am scared yes...but after experiencing the Roc.

this is a cake walk!!!! And NO this hasn't been easy either.But ssooooooooooo much better.

Feel free to email me again any time, and if you would like to talk to someone who can understand call me. (I know one can feel so alone at times )

But we are not...I think I may be trying to convince myself here

(just email me and ask for my number)I do so wish you the best... I wish for all us Lymies an easier way to get better....

and those who don't even know they have it..Well, they are in my prayers daily, Jamie

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Are you seeing an LLMD?

Are you on Rocephin daily?

Are you taking something along with the Rocephin to get to the "cysts" that the bacteria has turned into because of the Rocephin?

Is this the first antibiotic you've been prescribed for the treatment of LD? The reason I ask, is, many LLMDs have found that they get just as good, if not better results with orals and oral combinations of abx and are not using the Rocephin as their first choice.

I am not a doctor, but, my LLMD, www.drcharlescrist recommends skipping a dose or two up to a day or two when herxing gets as bad as you are describing.

The point is for your body to be able to fight the infection rather than the herx.

When you are herxing that bad (herxing is plainly intense Lyme symptoms that you have had and then new ones that you haven't experienced before) your body is not working for you but against you.

If you are in as much trouble as you are stating, doesn't it make more sense to loose a day or two of treatment, rather than having to quit Rocephin all together?

Many posters here, including me, are on Trazodone for sleep. You do not wake up in a fog as some sleep medicines make you. You may want to ask your doctor about it.

There are so many varibles in treating LD for it is a very complicated disease.

Don't know if you've been given this IMPORTANT link as of yet, but, please do not ignore it, for this link can be your Lyme bible of sorts, it's that important.

Tincup's links for new LymeNet members:

http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

My suggestion is to call your doctor.

Rosemary
 

I am sorry that you feel so terrible. I had a similar experience. The Doxy made me sicker than ever. I then went on IV Rocephin. I had a very hard time with it for the first 3 weeks. I thought I would die sometimes. I did not sleep well at all. My Dr. did tell me to skip a day or 2 if I didn't feel I could handle it. At one point he told me to take a whole week off. I must say though, I eventually made great progress on the Rocephin. After 12 weeks my Dr. switched me to orals, thinking we had made great strides. Unfortunately, I got awful GI symptoms on the orals. Like you, I am very sensitive.

I took a break from all abx for a few weeks to help my gut heal. Then, I went back on Rocephin and started treatment for Babs. I improved greatly. My Dr. does not advocate long-term IV, especially for me. But, given that I can't handle the orals, he switched me from IV Rocephin to IM Bicillin.

The Bicillin herx is no piece of cake but, I made enough progress on the Rocephin that the Bicillin might be just what I need to "clean up" what is left of the LD (my words, not my Dr.'s). The Babs protocol is tough but is also helping me.

Like you, I lost lots of weight - 56#s! That was enough to convince my Dr. to start Babs treatment. Have you been treated for any co-infections? I mention this because, once I started Babs treatment, the second round of Rocephin seemed to work better.

My heart goes out for you. I know how terrible you are feeling. I don't have an answer for you but, I hope you and your Dr. can come up with something to relieve the side effects. It sounds like your LLMD is cognizant of what you are feeling.

My best to you.

Bc
 

I would listen to what skyking and rosemary said.....bigtime.

Since you are seeing a dr who consults with Dr C, I would ask about the possibility of doing IV claforan instead of Rocephin. After hearing so many people getting worse on Roceph, i would not do it myself.

Dr C rarely uses Rocephin.

Hope you feel better soon.......Lyme is a horrible disease, but you CAN get better!

------------------
oops!
Lymetutu

 

I had a similar experience to what you are listing. During the first 3 weeks of treatment it was worse than I had been ever before and I was VERY sick before I started the IV. I had lost massive amounts of hair, had heavily slurred speach, constant muscle pain, I could not even lift 30 lbs with both arms, using a cane to walk, could not walk up stairs, no feeling in entire left side, unilater headache and all sorts of other things.

I remember the time line very well as it was christmas of 2002. I started to come out of it around Jan 7 2003. I started the IV Dec13 2002. On chrismas eve, I had a SUPER bad headache (Am I had had a headache constantly for a year before treatment... This one was really really bad) and on new years eve, the back of my head was so sore from swollen lymph nodes that I could not even put my head on a pillow. After all of this things got a lot better and I was able to go skiing on Jan 9 with most of the long term symtoms cleared..... BUT A new cycle of symtom flair started on Jan 18 but not as bad. The uninformed Dr, pulled my pick line in Jan 19,2003 and I eventuially relapsed due to too short a treatment (although I had been taking lot of oral antibiotics)

Did you start to feel the effects of the drug about 3 to 4 days after you started? If so, this is a "text book" response although not everyone has this timeline. Also, a common problem is severe depression as well as really strange dreams during this inital phase.

There is not much choice but to tough it out. This bug dies hard... Just remember that what you are feeling are the effects of an all out war between the abx and the infection.... Once the war is over and the dead bugs are cleared, you should start to feel a lot better.

I did IV Rocephin for nine months...the first six weeks were extremely rocky...Your description sounds pretty much like my experience.

When the misery finally ended, I felt MUCH better, and many of my neuro symptoms, which were why I was taking the Rocephin, were diminished.

I steadily improved over the months, but did not get "well".

At that same time a new strain of babesia was discovered. I was one of the first hundred or so patients tested for it and was positive off the charts. We stopped IV and treated the babesia, which took 8 months.(It was babesia WA1 usually found in the Pacific Northwest).

Since then I've been on differing oral medication combinations. I also have been reinfected with lyme and babesia from a new tick bite.

Often times a hidden case of babesia can impair the successful treatment of lyme. Have your doctor test for all possible co infections via Igenex labs. http://www.igenex.com

Locally, in the San Francisco bay area, LLMD's are treating babesia based on symptoms rather than positive blood work alone, with significant success. All of my previous babesia tests were clearly negative.

Back to your present misery....
I am genuinely sorry that you are having to experience this..Know that you are not alone or having an unheard of experience. If there is a high kill off of lyme there will be a drastic herx reaction, and it feels like agony incarnate...

Ask your doctor for some narcotic pain medication. It sure made my life a bit better. Also, good supplements are helpful. My LLMD offers supportive IV's when herxing...they are full of vit C, B complexes, etc...they sure helped me feel a bit better amid the misery. They are also used in Chronic Fatigue patients sometimes.

You can also ask your doctor about pulse therapy. If the herx reaction is simply too strong, some doctors have their patients use the IV for five days with two days off.

My treatment of lyme at the beginning was miserable no matter what medication combinations were tried. I herxed like crazy with every new med challenge. I had never seen anything like it and I was a trauma nurse.

Hang in here, ask for all the support you need. Those of us who have been through this certainly will offer all the experience, strength and hope that we can muster!

Carol Ann
 

1) While it might be a herx don't assume it is. Pain occurs for a reason and far to often people ignore it. There are a couple of things you should check on.

- First I assume you are getting regular liver enzyme checkups. If not talk to you doctor about it.

- You said you are one a lot of pain meds as well as whatever various antibiotics you are on and whatever support meds you are on. Take each and everyone of you medications and go the pharmacy and have them print the full, yes ask, for the full list of side effects and complications.

- Make 100% sure that all you meds can be taken together. Even good traditional doctors as well a good LLMD make mistakes. Never assume your doctor; even the legendary Dr C. makes mistakes, is correct they all make mistakes sometimes.

2) How long have you been sick? Generally speaking there is a period folks go though where they are both mentally and physically hit bottom the pain is like nothing they have ever experienced before and nobody can really understand it and it extremely hard. In time as you learn the cycles and learn the different options you have you might feel less trapped and less more hopeful that there is a cure out for you.

I hope you get to feeling a little better.

 

Whyattbw09
I am having a CBC and a liver check every week. *sigh* and they can't get blood through my picc line for some reason so I am having to be stuck every week!*deeper sigh*

My pharmacist is like my second mom so she watches out for me on medications I am taking.

I have been sick for over 2 years looking for answers and have been diagnosed with everything from lupus, MS, CFS, FM to just being crazy in the head. I had gotten to the frustrated point of thinking I would never find a cure and when the lyme antibody test was done I wasn't expecting to be positive thinking it would be just another shot in the dark. I have gotten to the point I just thought I was going to be sick forever and never get well again. The LLMD gave me some hope when he said he thinks he can help me get better. But this getting worse before I get better part is harder than I thought! He told me I would get to feeling a lot worse and I didn't think I could get any worse than I already was boy was I wrong!
Thanks for all the support it is good to know I have people who know what i am going through and are willing to listen and help.
Thanks,
stacie

I certainly can appreciate the surprise of finding that you can feel worse than you already are. It's a big psychological and physical blow. I decided that what I was going through must be like chemotherapy...then, for some reason, it was easier to deal with. Not any less depressing, but something I could wrap my mind around.

I hadn't realized that I would essentially be sick all of the time for weeks when I started...No one told me...and if they had I don't know that I would have begun the therapy. After the fact, I'm comfortable knowing that the IV was the right thing for me, but the process was plain old miserable.

I held on to the fact that I finally had a diagnosis, that the doctor wasn't shooting in the dark...that there must be a time on the horizon when I would feel better. I finally had an answer and there was hope for the future.

Feeling this crummy and in this much pain chronically, every day, wears on the spirit more than most realize. It feels isolating and desperate at times. I get so sick of being sick...

Remember that you are not alone, and share any of my words with family and friends who might lose their patience with your disease. I think that realizing and rolling with how difficult the treatment can be is the hardest part of dealing with long term lyme infection.

Til this miserable piece has passed, please remember that you are not alone, that people here will offer loads of "Poor Baby!" and "Hang in Here Kiddo!" comments...and mean them. Drink lots of water, rest, and be gentle with your wonderful self!

Carol Ann
 

Maybe your Dr knows this but wants to see how you respond to the rocephin.

I agree...watch out for over herxing...but stay the course...better days lie ahead....REALLY .

Your self setermination WILL win the day.

Trout
 

If you trust your doctor, please follow his instructions. For my family, IV Rocephin was the turning point for us. Yes, we did herx in the beginning, but when we started to feel better, it was all worth it.

The worst thing you can do right now is to doubt anything that you are doing. Be strong, hang in there and you will over come this. I swear.

frenchbraid

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Stay positive. Smile. People care.
 

Trout