I am seeing a llmd. I have been on Adoxa for 2 months, and before that I was on iv Rocephin for 8 weeks.
I am progressing and doing great compared to what I looked like in August.
However, I am alittle unnerved my llmd is changing my treatment to tindamax only.
Does this sound right? I thought tindamax was a cyst buster only.
Please let me know what you think. I have made alot of progress. My symptoms were very severe, and I cannot go backwards.
Your advice would be appreciated.
[ 11. January 2007, 10:22 AM: Message edited by: Katcon ]
Posted by bettyg (Member # 6147) on :
tindamax, if you edit your post adding this to subject line, you'll get responses from those folks you need info from.
use pencil icon, go to top and add that word at beginng of topic line. good luck. Posted by Katcon (Member # 9812) on :
up
Posted by micul (Member # 6314) on :
It depends on how long he is going to have you take it as a monotherapy. If more than a week or two, then you could loose some ground. There really isn't any reason to take it alone. It works good with Biaxin/Zith/Ketek. Ideally he should of had you on it with the Rocephin.
Posted by johnlyme1 (Member # 7343) on :
Tini is more than just a cyst buster, it is also a general anti-protazoa. That means that it will also kick butt to any protazoas that you might have in your system. This means giardia, toxo, and BABS too, just to name a few.
Personally I would be a bit suspisious of only being on tini straight. If you have other protozoas in your system, including babs, this might get really hard on your system with all the die off.
I was able to handle tini much better 14 months into treatment than in the beggining and I pulsed it 4 days on with 3 days off or more depending on how hard the herxing was. I also was on another ABX.
Posted by Katcon (Member # 9812) on :
Thanks for your responses.
I am really freaked out about this.
Johnlyme1 I am glad to hear that this will also treat babs. My llmd told me that but I had never heard that before. What abx did you take when you were taking tindamax?
Do you feel that the tindimax helped.
Posted by johnlyme1 (Member # 7343) on :
I was on biaxin once with tini - I also was taking tini while on IV rocephine.
It looks like you also have babs. Be carefull how much tini you take. I started slow. I broke it into 250mg doses. The first couple days at 250 a day. 500 per day was pretty hard for me, I never had to go higher than 500.
Posted by Andie333 (Member # 7370) on :
kat,
I started taking tindi after 14 months of combination abx treatment (ceftin and rifampin).
I also started slow and pulsed it, but I continued taking both the other antibiotics. Three at once was hard on me, so I ended up pulsing the tindi one week out of the month.
That one week, I'm not in great shape, but I do feel the tindi helps. A lot, actually.
Pg 13 "The antibiotics commonly used for lyme do not kill the cystic form of Bb. However, there is laboratory evidence that metronidazole and tinidazole will disrupt it. Therefore, the chronically infected patient who has resistant disease may need to have metronidazole (or tini) added to the regimen."///
Pg 15 ""The conventional antibiotics used for lyme, such as the penicillins, cephalosporins, do not kill the cystic form of Bb, yet there is laboratory edidence that metronidazole will kill it.
Therefore, the trend now is to treat the chronically infected patient who has resistant diseae by combining metronidazole with one or two other antibiotics to target all forms of Bb......Some clinicians favor tinidazole as this may be equally effective but result in fewer side effects."
Let me know how you're doing...wish we had better information and solutions..
Hugs, Kim
Posted by Katcon (Member # 9812) on :
Micul, Johnlyme1, Andie333, and Kim thanks so much for the info.
I pick up the tinidamax tonite. I guess I will try it for a couple of days, and if I start to feel wierd. Anymore wierd than normal that is, I will call my llmd and insist that my llmd add an abx.
I have had alot of faith in my llmd, but I feel really uneasy about just taking tini by itself.
What do you all think? Do you think I should just give it a try w/o the abx?
Hugs right back at you Kim.
Thanks again everyone.
I am just so stressed about this.
Posted by Lymetoo (Member # 743) on :
Go for it. Tindimax is a necessary "evil". Please begin slowly!! After all that Rocephin and no cyst buster, you could herx pretty hard.
You will NOT lose ground. [my opinion!] Posted by pq (Member # 6886) on :
I had a large break-through, jump in improvement with tinidazole.
go for it Posted by Katcon (Member # 9812) on :
Thank you so much for the encouragement. I didn't pick it up last nite because of fear. I will have hubby pick it up tonite.
Today I am home with my son who is sick. I will try it tonite or tomorrow.
We will be saying alot of prayers at my house, that it's a step in the right direction.
Any other tini advice would be greatly appreciated.
Thanks
Scaredy Kat
Posted by Karl1 (Member # 10922) on :
Katcon,
I highly recommend no lapse in treatment. This only gives the bacteria time and the chance to do more damage, hide further and build up immunities in different forms especially if only on one thing.
The plan then would be to change the antis fairly regularly so the body doesn't build up immunities to them. You want to be able to use them down the road, should the need arise.
My LLMD says I would never put you on more than 4 antis at once. I was actually on 6 at one time see below.
Tindamax is another one of my saviors. The Tini is what cleared my head/brain fog. My dose was 1500 mg/day which I took from the start.
While finishing Mepron cycle, I added Tindamax in addition to/while on 3 months IV Rocephin and Minocycline, Diflucan and Rifampin.
Herxing was not easy, but I was lucky to be able to stay in bed when necessary, etc..
For the Babesiosis I was on Mepron for a 6 week cycle. My LLMD is now thinking about another 6 week cycle as it is simply also good at fighting Lyme, but who knows if the first round really killed all the Babesiosis...is our thinking.
Overall, my thinking is hit it hard/fast and continuous until you are symptom free, then monitor it thereafter with possible boosters/pulses.
Also helpful is high dose vitamin supplements www.cpnhelp.org Their protocol is the baseline of my treatment.
Anyway, hope this helps on some level. Thinking of you and wish you all the best, Karl
Posted by Katcon (Member # 9812) on :
Karl thank you for your words of wisdom.
I am going to take it I have just never heard anyone taking alone without anything else.
Karl if your still there, what do you think?
Posted by Karl1 (Member # 10922) on :
Katcon,
Sorry I missed you to respond. I agree, I've never heard of it being taken alone either. Again, I was taking it with 5 other antis at once.
I'm now back on the Tini with Doxy and Rifampin. I typically would not take less than three at a time unless you or anyone has trouble with antibiotics in the first place.
Just need to stay on top of it with the probiotics (I recommend Acidophilis. I take 10 - 10 mg capsules a day. 5 with breakfast and 5 with dinner to even it out.
Additionally, I recommend taking Activated Charcoal to help clean out the toxins from your body....I know charcoal sounds crazy. That's what I thought in the beginning, but it really seems to help and you'll notice you feel better the next day or so.
With the charcoal you have to take it as far away from the antibiotics as you can so it doesn't negate their properties. Minimally 2 hours away from any antibiotics. I usually take 4-6 capsules between 2-4am, but whatever works for you.
I've always been on so much, the early morning was best to be sure I didn't stop the antibiotics or probiotics from functioning.
Again, the vitamins are key to health while going through this treatment.
I hope you are doing well and let me know if there are any questions. If I don't have an answer, I'll try to search for one. I just want everyone to know they aren't alone in this fight if they need support...
Anyway, All the best. I hope the weekend is ok. Karl
Posted by lyme4 (Member # 10723) on :
Karl1
I just read your abx you have taken and are taking.
My daughter is 14, freshman in high school. She is going to be schooled at home now because she is so sick.
She is iv rocephin, rifampin and zith. The dr is putting her on tindamax, pulsing it 3 days per week.
I am so scared. I gave it to her a week ago to see if she will live!! She did OK. I was afraid she would die with all these abx.
But every week there is something going on with school, midterms, etc, that I am afraid to give it so I delay. But I know she needs it to break the cyst.
She is so sick. She was undiagnosed from 3 years old to 14. She got bit when she was 3 and no doctor knew what was wrong with her.
Will she ever lead a normal life. She only knows life with head pain, unable to study for school, etc.
I am so scared. My whole family has it, my husband, me and my 2 children. Why did this happen?
Lyme4
Posted by johnlyme1 (Member # 7343) on :
Lyme4 - That is a long time for you daughter to have had this darn disease - there is one thing that she has going for her, her youth. Keep her supported nutritionally, her body should be able to recover. I sure wish I had some youth on my side.
Karl1 - Activated charcoal is great stuff - I have a colonic cleanse tht has some of this in it - it does wonders to keep the toxins moving out
Posted by Katcon (Member # 9812) on :
Ok I am crashing hard on tindimax only.
I normally take 2 Adoxa a day. Today I took the tindimax only.
By 6pm I could not stand it any more. I have alot of pressure in my head especially behind my right eye, and my legs are extremely weak.
I have 3 Adoxa left. I just took one, and it has relieved the pressure from behind my eye. I am miserable.
I will be calling my llmd on Monday. I know if I take the tini only I am going to lose ground. My legs are buckling today, and my energy gone.
This is so frustrating. I hate being a lab rat.
Posted by Robin123 (Member # 9197) on :
Lyme4, I feel the same way, asking why did this happen. Well, one answer is 'cause no one told us about this danger. Silence kills. And that silence is still going on now. That's why I think everyone needs to know. The more publicity, the better.
After that, put every smart person on this to figure out how solve every aspect of this TBI mess.
Posted by humanbeing (Member # 8572) on :
Oh Gd Kath,
I am so upset you feel this miserable I will call you later (don't give up this just means the tini is busting cysts--and unfortunately kicking your but)
With this infection we need to fight fire with fire...the sicker you are the more drugs you need. It is a cruel cruel disease and we need to get the word out.
Posted by Karl1 (Member # 10922) on :
Hello,
Lyme4: My heart goes out to you. I worry about my 11 month old and can't imagine what you go through there. As I'm not a doctor, this is only my opinion based on my progress.
It sounds as if your daughter is on the right track to recovery. It is fortunate she is young in that respect and will heal quicker than most of us. I've dealt with the head pains and usually will also take ibuprofen which has helped.
The Rocephin turned me around the corner to better health, the Tindamax cleared my head/brain fog. This might have been that I did the Rocephin and Tindamax at the same time with others but I swear by Tindamax.
Again, it's best to not have a lapse in treatment and to keep hitting it as hard as possible as quick as possible. It is also best to change the antis periodically when no herxing is apparent from what you are currently on.
Change it up so the bacteria doesn't get used to it and re-attacks. (hope i'm not repeating myself too much, but it is important)
Unfortunately, herxing is the "getting worse- to get better" track. She WILL lead a normal life down the road. I'm 90% better THANKFULLY in 9 months. I'm getting back to normalcy and bonding with my daughter and working back into driving a car, etc..
The zith is also needed and also the Rifampin is great. One thing to keep in mind, though, once off the Rifampin, we have heard the body will no longer find it useful should you need it again...
I don't know if this is correct. We are trying to find out before I go off the Rifampin, myself.
It is key to stay as active as possible and to support the body with vitamin supplements and probiotics. I do treadmill for 10-20 minutes each day at 2 mph and work around the house when able.
The cleansing charcoal is helpful, maybe not for everyone, but there is also Vitamin C flush to help eliminate toxins after herxing.
I actually used the C flush for the first time today, (in 9 months) and immediately felt better within an hour of use. If you let the toxins build up - it can be like a relapse or new symptoms could arise.
For me it was deep itches and tingles through my head/face/neck and upper body. One last item is to drink lots of water. Keep the body working/flushing the liver. I also give blood every 3 weeks to monitor my white blood count and liver.
If there are any major changes in these, I would stop the antis and re-assess what is being taken. I'm sure with the Rocephin this is being already done and watched for gallstones with ultrasounds.
Stay the course....treat your whole family with the supplements and antis. Hit it hard and as fast as you can. This won't give the bacteria time to "hide."
If there are any questions, let me know. I want to help in any way I am able. If I say something out there and am incorrect, I hope everyone will let me/us know. I certainly do not have all the answers.
Best wishes to you and your family as they fight this. Why this happens....yes it is a silence...so I hope our ABC special will enlighten the impaired medical practice on some level.
Best Regards, Karl
Posted by char (Member # 8315) on :
Kat-
At the beginning of my lyme treatment I found that the cyst buster would hit me hard.
I was supposed to do 5days per month and did not do that until I was feeling better on other abx, like 8months.
I am good on it now and I can tell it is really helping.
I am a bit of a scaredy cat giving to self and kids. I take one half the 500 tini dose prescribed for me.
My LLMD does tell me to take a break if my reaction to whatever particular abx is too much.
Best Wishes, Char
Posted by Katcon (Member # 9812) on :
Char
Thanks for your encouragement.
I am calling my llmd so I can get more Adoxa. I cannot take Tindamax only.
I have made such great progress since August, and I cannot afford to go backwards.
I was an absolute mess in August. I could not walk well, had difficulty swallowing, my eyelids were very weak and difficult to keep open, and I had alot of trouble breathing.
I really don't think it is wise for me to be off an abx right now, and on Tindimax by itself.
I hope my llmd is at work tomorrow, if not I will page him.
Posted by lyme4 (Member # 10723) on :
Thanks Karl1 for your reply.
Alot you listed we do. But there were somethings you listed that we do not do. Like detox, or c flush, which I do not know what that is but will call a whole food store soon. I do feel, especially with daughter that she is not getting enough detox from all the abx.
Yes she is watched with her IV for gallstones and liver.
Thanks so much for writing. That meant the world to me.
lyme4
Posted by lyme4 (Member # 10723) on :
Thanks Robin123 for you reply.
When I hear others feel the same it makes me feel better.
But this is just horrible this is happening to so many people and nothing is being done except for those few LLMD. Without them then what.
I know so many people that I suspect have it to but to say anything they will think I am crazy.
I have told people but after a while you just give up because if they say OK, I will get it checked, they get a doctor who says no you don't have it, or they get the wrong test and it says negative to lyme. So then we look crazy. Even my own family members I know I think they have it but they went to doctors and of course the answer was negative or the doctor thought no, you don't have lyme.
I can't take this ignorance much longer. What is it going to take to change.
One of my doctors said why he thinks nothing is being done but I don't want to post it.
Thanks
Lyme4
Posted by lalalu (Member # 10854) on :
I started my tinidazole tonight. I am also scared of the Herx. But I will be okay. I have been on IV Rocephin for 3 1/2 months and have reached a plateau. My LLMD wants me to pulse the tinidazole 3 days a week, twice a day.
Posted by Karl1 (Member # 10922) on :
Lyme4,
I think the only way to possibly convince others who have symptoms and think we are crazy is tell them this..
..take a series of antibiotics.....Period. If you have any type of herxheimer reactions, then you have some infection that needs to be eliminated and further tested for....
Secondly, due to the failure rate of Lyme testing, I hear so many people who have negative tests initially and take antibiotics for a short time and then are retested....the Lyme shows up positive....
All you can do is show your knowledge and support and if they decide not to pursue a possibility that may make them better.....then that is their choice.
I've learned to keep it simple and knowledgeable as possible and the rest is purely up to them. They have to decide. It's rough to look at it that way, but the close minded majority do win, unfortunately.
LaLaLu, hang tough! You can do it!
Katcon, you still there...haven't heard from you. Hope all is well.
Best Regards, Karl
Posted by humanbeing (Member # 8572) on :
Kath--
Sit up in bed and give us the update:
Hugs, Kim
Posted by Katcon (Member # 9812) on :
Hi
Here's my update. Bounced right back once I started the Adoxa.
Which tells me that it's pretty sad that 2 days off of Adoxa and I start to fall apart.
I am taking tinidmax 250 a day. Just yesterday I really started to feel achey, tired, and muscle weakness.
Somedays I really wonder about all of this. Is this cyst busting thing for real.
How do we really know?
It hasn't been proved inside a human body yet right?
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