Hi everyone..I am feeling extremely sick again and it is so frustrating to me. I am back to barely being able to eat..severe nausea, frequent bowel stuff (sorry TMI), vertigo, aching pains and EXTREME exhaustion.
I am on Rocephin and Tinda but all I seem to do is feel sicker with each passing day. I just had another comprehensive stool test which showed no c diff, no blood, no yeast and no parasites. I am at a loss as to what to do...I would rather go back to the baseline awful I felt before going on IV than to stay this sick.
I do not know why I am not seeing progress, only what appears to regression. It is immensely frustrating, as I have the most extraordinary fiance and I want to be healthy for him. I feel I am not being the loving partner that I fully could be if I were energetic and healthy.
I need to get better and I need to get better soon...I am not saying a cure or even 50 percent better, but I need to see and feel SOME kind of progress otherwise what the hell am I doing all of this for?
Any ideas would be appreciated. Thanks Jess
Posted by Life+Lyme (Member # 33568) on :
I don't have any suggestions, but I am so sorry you are feeling so sick and discouraged. Are you doing lots of detox?
Hugs!!
Posted by jessicabooklover (Member # 39427) on :
I am doing basic detox stuff...alka seltzer gold and lemon water..nothing else really.
I am frustrated because I have this amazing man in my life and I feel like I am just this sickly burden on him. I know thats probably not the case but I want to be healthy so we can live a fully normal life.
Also I cannot really talk about this to anyone, even my closest friends because I do not want them to worry or feel discouraged. UGH so frustrating. Hopefully I will improve soon somehow.
Thanks Jess
Posted by Life+Lyme (Member # 33568) on :
That sounds incredibly frustrating. Just focus on how things will improve someday, and vent here a you need!
It sounds like your man appreciates you and enjoys being with you even if you are sick. I know it's no fun, but you can't think about the situation as being a burden on him. He wants to help you!
Also, have you ever tried an IV glutathione push? I find those very beneficial.
Posted by Razzle (Member # 30398) on :
Detoxing you can do with a PICC line:
Lemon water
IV hydration, if needed
Dry skin brushing (except don't do the PICC arm)
Foot soaks in epsom salt water (warm, not too hot)
Deep breathing exercises
Other herbs as tolerated - milk thistle, artichoke, peppermint, ginger, etc.
Colonics
Walking - if this isn't too much exertion for you
I know there are other detox things that some may suggest, but the above items are more gentle and I don't think you can handle anything more harsh than this.
Also, you may need to give yourself a break for a dose or two of your IV abx to help your body catch up with the detoxing. But don't do that without discussing it with your doctor first!
I also think you should discuss your feelings about this with your fiance. He can help support you through this.
Take care,
Posted by Robin123 (Member # 9197) on :
I forget what your doctor situation is like - are you seeing a really good doctor you can discuss all this with?
I have heard from some who were on IV rocephin that it took some time for it to work, so maybe that's what's happening?
Posted by glm1111 (Member # 16556) on :
Jess,
The stool tests for parasites are not very accurate at all. Similar to the lyme tests. I always had negative tests even when I was actively passing parasites.
PLEASE consider this as a possible cause of you being so sick.
Parasites can cause really bad symptoms especially since they hibernate in the small intestine. Would your doctor be willing to try giving you some antiparasitics?
Or maybe you could at least try some of the herbal antiparasitics or salt/c. You can open the herbal capsules into some applesauce and take a little at a time with some food. I feel sooo bad for you. Gael
Posted by Ellen101 (Member # 35432) on :
It may be too soon for you to be doing the tindamax. You may need the load to be lightened first. How much and how often are you taking it?
Posted by beths (Member # 18864) on :
I agree-maybe you can pulse the tindamax?
One detox supplement that really helped me was modified citrus pectin and phytosterols-they are binders that help "grab" the toxins.
Lemon water and baths weren't cutting it when I got my PICC
Posted by daphnesmom1 (Member # 39433) on :
Jessica, ask for some glutathione! It will help you unload the die off.
Posted by Winni (Member # 36772) on :
Jess, my LLMD has me on Welchol. It is similar to CSM for binding. (at least that is what I understand). I has helped me immensely. It is recommended to take 6 pills per day but I can only take 2. Anymore than that constipated me horribly.
I also take Pekana detox basics and burbur. It seems to help as well. Lemon water upsets my stomach so I only do that a little.
Hope you can get some relief soon! Hugs!
Posted by Messa (Member # 38065) on :
I'm very sorry your feeling worse. I have all the same symptoms you have.
I understand feeling like your a burden. I feel I am a burden to my husband. I know that he loves me and wants to help. He often doesn't know how or what to do for me.
It sounds like you have a man that really cares for you and wants to help. That is such a treasure. When I'm feeling so down I think about how thankful I am to have family that cares. They don't understand how I feel but they do care.
I'm there with ya. I feel I am getting worse and often wonder why am I even doing all of this treatment?
Just want you to know I understand. Will be praying for you. Hugs
Posted by CD57 (Member # 11749) on :
How much Tindamax are you taking? You may want to back off on this.
It is NOT regression although it feels like it.
Posted by jessicabooklover (Member # 39427) on :
Thanks so much everyone. I really appreciate all the responses. I am on 500 mgs of tinda 2 times a day , every three days.
I really hope things turn around soon. My fiance is amazing but I still want to be fully healthy to truly appreciate him and to give him the happy life that we both want. Thanks again. Jess
Posted by Keebler (Member # 12673) on :
- You say that you feel you are "not being the loving partner that I fully could be if I were energetic and healthy" (end quote)
In all kindness, that focus can hurt you tremendously. Right now, this is not about that at all. Try to let that lift away. It can weigh one down terribly.
You are enough right now, and whole just as you are, no matter what your body is going through. It's all part of life. The roads can have turns we don't expect so try to just take it one turn at a time.
Love is not a performance but a state of being. -
Posted by jessicabooklover (Member # 39427) on :
Thank you Keebler...that means a lot. Jess
Posted by Kudzuslipper (Member # 31915) on :
I agree with keebler on this one. just for now, give into being sick. this sounds like a lot of die-off which is good. my first months on abx were horrid. I am sorry you are feeling ill. but your wonderful fiance loves you and wants you well, and unfortunately with this horrible disease, you feel worse before you feel better once you start treating. think of it as chemo... no one would expect a chemo patient to be chipper all the time.
I also wonder like Ellen, if it would be better to kill some of the load first and then start with the tindimax? Are you taking probiotics... I know it is not the best out there...but I absolutely have had the best results bar none with florastor. twice a day at first and then just once. totally turned around a nasty (embarrassing flare of UC)
Jess, I know it is hard, but try to prepare yourself for ups and downs on the abx. the first week you feel ok you are gonna feel so relieved!!!!but then you may (likely) crash again. the crashes are so, so, so, discouraging for you and your loved ones, even if you don't feel as horrible as you do now, the letdown is fierce. knowing to expect it helped me a great deal. I didn't live in dread of a crash, I made the most of the good times, but when it came... I was more emotionally prepared and tried to look at it as killing time (insert evil laugh here) and I came here to whine to those who knew exactly what I was going through and could tell me,it is ok.
are you keeping a journal? it really helps to see the pattern... for after the first few months (which were bad all the time) I could see it was the end of one month beginning of the next. and the really bad days, mostly got fewer and less intense.
if you take the front of a date back where all the months are laid out together... and you black out your worst days, circle your 'eh' days and leave your good days unmarked... you can begin to see a pattern and a cycle... how you respond to new treatments... if you are herxing every month, or every 2 weeks, or just all the time.
this is how I knew I was reacting to cipro, cause my herx didn't go away... and how i knew flagyl was making me depressed cause I would get depressed on the 3rd day of my 2 week pulse every time. it both helped me communicate with my llmd to change things, but also helped me be prepared. kind of like when you first realized, that you cried at sappy commercials for a few days before your period! just knowing the reason makes you feel better.
I know you have been sick for a very long time, but you only just started "the chemo." it's gonna be rough! but it does get better.
Posted by jessicabooklover (Member # 39427) on :
Kudzu-thank you so very much for the incredibly helpful and thoughtful response. Jess
Posted by seibertneurolyme (Member # 6416) on :
Have not read all the responses, but being on rocephin and being nauseated brings 2 possibilities to mind. You could be nauseated from babesia which you are not treating or it could be a gallbladder issue -- milk thistle could potentially help if that is the cause.
Bea Seibert
Posted by Ellen101 (Member # 35432) on :
Why not call your doc and see about backing off of the tindamax for now and see if that helps? My LLNP wouldn't even let me attempt a cyst buster until she felt I could handle it, and that was a yr into treating. Prior to that she said it would make me too sick.
Another resource you may want to check out is the free webinars on Tuesday night with a well known LLMD. You can ask questions and receive answers all live on the web. It is great nd you learn do much. You can click on any of the previous dates to watch the ones you missed. http://www.treatlyme.net/webinars/conversations-with-marty-ross-md.html Posted by jessicabooklover (Member # 39427) on :
Bea-I do not have a gallbladder, so thankfully that is one issue that I do not have to deal with.
Ellen-thanks for the info about the webinar. Jess
Posted by lifewithlyme (Member # 4557) on :
I agree with Jessica - but Keebler's words are very encouraging...Im into my 2nd year of marriage with a man whose goodness I didn't think possible in a human being...I often feel horrible for all the crying, the illness, etc...and often apologize. But we can't help it, this disease chose us. Hang in there, you're not alone.
Posted by faithful777 (Member # 22872) on :
I felt a lot worse before I felt better on IV. It does get better but you have to realize that IV hits things hard.
Detox is so important and sometimes you have to just ride it out. IV turned everything around for me. Speak to your doctor so they know what is going on.