desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
So, I just added Tindamx yesterday and woke this morning w/ massive full body weakness, ringing in my ears and numb face. Feels like a lead weight on my body.
I have been on Flagyl many times during my treatment but not so much Tindamax.
Can Tindamax work this quickly breaking cysts or could this be side effects? Will ask llmd but wanted to get first hand experiences.
Currently treating Lyme, Bab.'s and Tularemia.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Get emergency medical help if you have any of these signs of an allergic reaction:
hives; difficult breathing; swelling of your face, lips, tongue, or throat.
Call your doctor at once if you have a serious side effect such as:
fever, chills, body aches, flu symptoms; numbness, burning pain, or tingly feeling; or seizure (convulsions).
Less serious side effects may include: vaginal itching or discharge; nausea, vomiting, loss of appetite, indigestion; constipation, diarrhea, stomach cramps; feeling weak or tired; headache, dizziness; or a metallic or bitter taste in your mouth;
posted
Myself I used tindermax with my protocol , it can be brutal , but then again just as brutal living with lyme and bartonellia and not being treated at all.
Myself I just rolled with the punches , nothing mattered was not backing down from any meds , or supplements
I did not want to hinder or prolong my treatment and I'm glad I stuck with it. I would say to myself well made it through another day taking meds , regardless of symptoms or if it was a side effect . It was one wild roller coaster
and at same time if I did back down I would still be sick and would have not regained my life back as it once was . I have been ridiculed by doctors especially at hospital for heart problems ,breathing Etc so I stopped going to er prior to any type of meds
If I had to do this all over again I would just take my meds no matter what .
Me personally , my opinion it's to easy for doctor to give in and say ok let's try something else . Then I be back starting all over .Living with this disease or taking meds is no walk in the park .
This is not advice just my foolish opinion
Posts: 238 | From Where | Registered: Aug 2012
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Lostlyme, I don't totally agree with>
quote:If I had to do this all over again I would just take my meds no matter what.
I think it's ok to stick it out no matter what, but if someone is having side affects they should follow it up with blood work, etc.
Many people are on multiple meds, and some are very damaging to our body’s, just be very careful.
Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
I agree to forge ahead as long as the body can tolerate and what one is feeling is NOT a serious side effect/allergic reaction.
I think in my case it is a combo of side effect and herx. LLMD thinks to lower dose and stay on pulsing schedule should be fine. I feel better today after cutting the dose down to what I should be on based on LLMD's suggested weight dosage.
I have been at this for 10 years and only got into remission after treating aggressively over the past 2.5 years. During that time I had 2 or 3 allergic reactions to meds that required me to stop so I certainly always have my eyes open to that possibility.
Anyone else out there w/ Tindamax experience? DW
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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surprise
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Member # 34987
posted
Tindamax was one of the hardest I did- took me 3 attempts to get to a full 2 week on/ 2 week off- but once I got there, it was good.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
Thanks surprise. I am doing 3 days on / 4 days off for now. Thankfully today is day 3 and I do seem to be handling it a bit better today.
My hubby is on the same Tindamax pulsing schedule so it is an interesting household right now!
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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posted
Tindamax used to make me very tired when I first started taking it but not any more. It also gives me headaches, but not sure if its a herx or not because I don't get them with every dose.
I have pulsed it three days a week and not consecutively. I find that a day off in between doses has helped tolerate side effects and herxes.
Tindamax can cause neuropathy as well so watch out for that and take magnesium and B12 to protect your nerves.
Posts: 187 | From Connecticut | Registered: Jun 2013
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posted
So sorry you're finding Tindamax tough. Me too -and I've been taking it (Fri-Sun) for over a year now. It *does* make me extremely fatigued, actually amplifies all my sx. However, at times I feel it has helped clear my brain even slightly so it must be doing *something*.
Glad you're handling it slightly better on day#3. Don't know what dose you're on, PM if you'd like to know what I take. Apparently you don't need to 'bombard' your body, even smaller doses help and don't forget it acts synergestically w/ your other meds. Don't forget to detox! take care!
Posts: 394 | From Southeast | Registered: Oct 2012
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
Thanks for the continued responses. I am pulsing it and start back on again tomorrow. Curious how pulse #2 will go....This is tough stuff.....
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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quote:Originally posted by oceangirlSA: Tindamax can cause neuropathy as well so watch out for that and take magnesium and B12 to protect your nerves.
Can Tindamax CAUSE neuropathy? My Lyme neuropathy in my feet has worsened on Tindamax, but I have been assuming it's a herx. Opinions?
Also, I have stopped my weekly B-12 injections since my blood levels were high off the charts. Now they're just high but on the charts. Opinions?
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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posted
@paulieinct,my B-12 levels have been super high too but I think it just means that our bodies aren't using them. I still continue to take Sublingual B-12 as well as B Complex and B6.
My neuropathy despite all this does get pretty bad too. However it varies from pulse to pulse and I keep taking all of the above so perhaps other modalities like soaking your feet in cool water, some kind of lotion, etc. might help? I'm sorry you too have this but at least I don't feel so alone!
Posts: 394 | From Southeast | Registered: Oct 2012
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posted
I hated Tindamax. It never got easier. It took me 30-40% lower than baseline. I stopped after 3 months of trying to pulse it. Terrible med for me. I got better without it. No sense going through hard meds that only make you feel worse.
Did I tell you how much I hated Tindamax? Add Zithromax to that list, too.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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GretaM
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Member # 40917
posted
Sixgoofykids-I totally feel the same way about zithromax.
The first stretch of it-benign.
The last stretch with mepron...hell.
Tindimax-loved it. Still love it. One of the few abx I feel "better" on, although the end of the pulse on is a bit tough. Two weeks on. Two weeks off.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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CherylSue
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Member # 13077
posted
I hated Zithromax, too. Felt awful and very depressed. Once I stopped, so did the depression within 3 days.
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
I haven't had any problems with tindamax, but I alternate days with cipro and never take tindamax for 2 consecutive days. Been doing this since January and still seem to be improving!
-------------------- One day closer to being cured..... Posts: 104 | From Wisconsin | Registered: Jan 2014
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posted
Sounds like peripheral neuropathy. Autoimmune neuropathy can also occur if you using too many antibiotics at once.
People often think they are "herxing" or killing bugs, when it's actually your body attacking itself.
I would be veryyyy careful on all of those drugs!!
Good luck
Posts: 169 | From The Poconos | Registered: Jun 2011
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
Started getting increase in facial neuropathy right after taking Tindamax' 3days on/4days off.
Was told by LLMD that if I get ANY neuropathy I should stop immediately. So then how do we know if it is a herx causing the neuropathy or dangerous side effect? I have neuropathy as part of my TBI sx.'s so how does one tell?
I get a spike right after taking the med and so does my hubby - both of us on our face. I am holding off for now and going back on GSE.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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