HealingWell
Search Close Search
☰

Had a set-back. Your opinions appreciated. ***UPDATE***

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
1 23 4
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/27/2018 4:09 PM (GMT 0)
Girlie - I had a similar reaction about 4 years ago when put on a pic line.

My heart began racing, temperature went up to 105, couldn't even pick up phone to call someone I was shaking so bad. Lasted about an hour.

Tried it again two days later- almost identical reaction, just not as long and temperature only to 103.

Hoping all gets better for you.
Posted 9/27/2018 6:07 PM (GMT 0)

Dahlias said...
Girlie, how terribly scary. I'm so sorry you went through that but glad you're safe.

You're thinking herx now? I don't take any of their protocols as given -- I always take it slower and lighter. I feel like they're like a bomb to the system as written.

I know Dr. J is the top expert, but next time you might want to consider seeing R. I've gotten responses same-day since switching to her.

Will you call again today if they don't call back?

I called this morning....and I just got a call back...she asked me a few questions - what I was doing for detox...etc...and she will get back to me.
I just need to know if I should do Week 2 now...was supposed to take meds M/T/W of this week...so wondering if I should just skip this week...or just take them late.
The meds I'm supposed to take for three days are not the persister meds...so I'm thinking it should be okay.
Posted 9/27/2018 6:08 PM (GMT 0)

Serfr said...
Hi Girlie,
I'm glad you are ok. I wish I could give help or advice. (All I do on this board is ask questions...such a difficult disease to understand) Just wanted to say glad you're feeling better.


thank you Serfr.


I'm so grateful for this forum...to vent...get opinions....etc.
Posted 9/27/2018 6:10 PM (GMT 0)
I'm glad you got a call back.

I think it makes sense that it should be ok to continue with the meds you've been ok with before.

Keep us updated.
Posted 9/27/2018 6:10 PM (GMT 0)

tickbite666 said...
Girlie, try some alka-selza gold next time (and I hope there isn't a next time).

later.

I gave up on ASG. I was buying it a few years ago...but didn't seem to help. I may have some in the cupboard.
Posted 9/27/2018 6:10 PM (GMT 0)

Rainy cloud said...
Stay strong!


Trying....
Posted 9/27/2018 6:12 PM (GMT 0)

running wild said...
Girlie - I had a similar reaction about 4 years ago when put on a pic line.

My heart began racing, temperature went up to 105, couldn't even pick up phone to call someone I was shaking so bad. Lasted about an hour.

Tried it again two days later- almost identical reaction, just not as long and temperature only to 103.

Hoping all gets better for you.

Sounds similar! I couldn't control my shaking/jerking ....very scary. My temp was 102 - my pulse rate was 105....for hours....

The high pulse was freaking me out more than the temperature.
Posted 9/27/2018 6:14 PM (GMT 0)
Waiting for a call-back on whether to do my week 2 meds (4 days late) or just abandon this week.

Also, I really don't want to do the daraprim/dapsone for cycle 3.
Posted 9/28/2018 1:53 AM (GMT 0)
I wouldn't want to take it again either, but do you think this means the new protocol is really hitting something that was being missed before? Would you want to try a lower dose?
Posted 9/28/2018 2:53 AM (GMT 0)
What was your bp at that time? Wow I feel for you and pray your ok and also that you stabilize and get back to a normal. My llmd orders are very clear and they call me every two weeks to check on me etc. but the big bold at the top is if you are herxing stop, etc. I sent you last night read the top part. Never continue taking the same dose when the body is that overwhelmed it can kill or cause unrecoverable damage. I just got back from my llmd in Missouri and he explained to me because I was unhappy that I was doing better then had a set back, he reminded me that he said 2-3 yrs is possible and that you can only chip away at this disease and it takes time but chipping away will totally heal you. Made me feel better and I am motivated again. My advice to you is that is way too much back off some and then restart slowly again, but I do not need to give you advice because you know way more than me. I just want you to know I love ya and support you and pray your ok. Don
Posted 9/28/2018 2:59 AM (GMT 0)
Girlie i think its ok to just skip a week and start week 2 of the cycle next week. As you know Dr. J isn't very regimented with this stuff.

In terms of not being able to handle the one two punch of the daraprim and dapsone, as I think you know my wife is only doing daraprim as Dr. J thought dapsone as well would be too much for her.

So maybe they'll back you off or you can tell them you don't want to do both.
Posted 9/28/2018 5:47 AM (GMT 0)

Dahlias said...
I wouldn't want to take it again either, but do you think this means the new protocol is really hitting something that was being missed before? Would you want to try a lower dose?

It could be - but it was too severe - never herxed like that bfore.

I think maybe taking it for three days instead of 5 might not be so bad.

I’m going for “safety labs” tomorrow - will see if it shows anything wonky.

Maybe it did deplete my folic acid and I’m anemic.


So the triage nurse I spoke to today said she’d pass the info on and someone would call me back on whether I should do my week two - which is supposed to be this week (3 days) or not.
Posted 9/28/2018 5:52 AM (GMT 0)

Donjr said...
What was your bp at that time? Wow I feel for you and pray your ok and also that you stabilize and get back to a normal. My llmd orders are very clear and they call me every two weeks to check on me etc. but the big bold at the top is if you are herxing stop, etc. I sent you last night read the top part. Never continue taking the same dose when the body is that overwhelmed it can kill or cause unrecoverable damage. I just got back from my llmd in Missouri and he explained to me because I was unhappy that I was doing better then had a set back, he reminded me that he said 2-3 yrs is possible and that you can only chip away at this disease and it takes time but chipping away will totally heal you. Made me feel better and I am motivated again. My advice to you is that is way too much back off some and then restart slowly again, but I do not need to give you advice because you know way more than me. I just want you to know I love ya and support you and pray your ok. Don

I didn’t take my blood pressure - just did my heart rate with my fingers on inside of wrist

Thanks Don. I didn’t think I was over doing it because I was doing well with the four days - thought the fifth day would be okay - and then a couple days off ...
I guess it put me over the top... skull
Posted 9/28/2018 5:55 AM (GMT 0)

Rikky1 said...
Girlie i think its ok to just skip a week and start week 2 of the cycle next week. As you know Dr. J isn't very regimented with this stuff.

In terms of not being able to handle the one two punch of the daraprim and dapsone, as I think you know my wife is only doing daraprim as Dr. J thought dapsone as well would be too much for her.

So maybe they'll back you off or you can tell them you don't want to do both.

So daraprim is the one to choose if I can’t do both then....

I guess I can assume it’s not the Rifabutin that caused the issue - but the daraprim combined with dapsone.
Posted 9/28/2018 9:10 AM (GMT 0)
So to hear girlie you are battling this again. Hooingvfor your improvement
Posted 9/28/2018 4:31 PM (GMT 0)
Dapsone is quite strong. Was a good med for me, but doc had me start slow, 25mg every other day. I built up from there. Herxes were intense, but subsided in intensity after a few weeks of being on the med.
Posted 9/28/2018 6:48 PM (GMT 0)

Roxie60 said...
So to hear girlie you are battling this again. Hooingvfor your improvement


again? more like 'still'.


thanks.....
Posted 9/28/2018 6:50 PM (GMT 0)

Rainy cloud said...
Please consider stopping the dapsone for a week, I really think that's it.

I have stopped Dapsone/daraprim.

It's only for one week out of 4 that I'm supposed to take it.

I'm now on Week 2, but haven't taken any week 2 meds.
Posted 9/28/2018 6:51 PM (GMT 0)

sebreg said...
Dapsone is quite strong. Was a good med for me, but doc had me start slow, 25mg every other day. I built up from there. Herxes were intense, but subsided in intensity after a few weeks of being on the med.


What dose did you get up to?...and was it daily?

mine was 50 mg daily....but in one dose.
Posted 9/28/2018 9:16 PM (GMT 0)

Rainy cloud said...
Girlie I took Dapsone for a month, it wasn't until the end of the month that it happened.

The weird thing is, that now, several months later, even if I take 1 pill of dapsone, it happens again.

It's very strange, it's like my body developed a reaction against it.

That's what I'm afraid of...if i'm going to be hypersensitive to it now...

It was frightening...don't want to go 'there' again....
Posted 9/29/2018 5:52 PM (GMT 0)
Sry I'm late to the discussion. I have not read through all the responses, so someone else probably mentioned what I'm going to say...

Sounds to me like you had a break through. My last llmd described it as chipping away with various protocols. Then all of the sudden, bam! All hell breaks loose as you've broken through as barrier.

Stick with it Girlie! You got this.
Posted 9/29/2018 6:04 PM (GMT 0)
I am so sorry you are suffering Girlie.
Posted 9/29/2018 8:25 PM (GMT 0)
Wow, I'm sorry too! Have the bad reactions eased off by now?

Hugs my dear friend!
Posted 9/29/2018 11:37 PM (GMT 0)

Hoagie said...
Sry I'm late to the discussion. I have not read through all the responses, so someone else probably mentioned what I'm going to say...

Sounds to me like you had a break through. My last llmd described it as chipping away with various protocols. Then all of the sudden, bam! All hell breaks loose as you've broken through as barrier.

Stick with it Girlie! You got this.

I don't know Hoagie. It was very intense...not like any other herxes I've had.

Also had my 'safety labs' done a couple days ago...and my kidney function tests aren't good again.
and my WBC count went down to 2.9.

If I knew it was a herx...I would try it again...maybe instead of 5 days...do 3 days...but if I've developed some sensitivity to it...I don't want to chance it....

I do want to live.... skull
Posted 9/29/2018 11:38 PM (GMT 0)

Zimica said...
I am so sorry you are suffering Girlie.


Thanks. My head still isn't 'right'.


Haven't gotten back to my 'baseline'.
✚ New Topic ✚ Reply
1234