Just canceled IVIG

[laure]

Dd11 scheduled for second hdIVIG tomorrow and Thursday - and I just canceled it! She is on a lot of new treatments right now, including experimental seroquel as an anti-psychotic per psychiatrist, along with zoloft which hasn't done anything for OCD, tindamax daily for 2 1/2 weeks now, and I just don't want to confuse the issue if she gets better, or does not get better from these treatments. It is a tough decision mainly because so many others have such a tough time getting approved for IVIG, and here we are approved for it for an entire year...and don't want to use the treatment! Feeling bad because it is scheduled for tomorrow and Thursday, and I hope someone else who really wants/needs the appt can get in. I spent yesterday waiting for local LLMD to get back to me, but all I got was a message saying "he wants her to do it", which is not the kind of logical reasoning I needed. Soooo, anyone out there in my corner?

[LNN]

Absolutely in your corner.

 

We did IVIG because I felt obligated to. How could I not give my kid every opportunity? Even tho I wasn't comfortable, I felt I owed it to my son to do "everything" possible. It was a bad experience for us. We were approved for a second one and I cancelled. It just wasn't the right treatment for us. Always trust your gut.

 

FWIW - tindamax every day is quite an aggressive approach, IMO. My DS only did tindamax two days a week and by the 5th week, we had to stop. The herx was just overwhelming. 18 months later, we're gearing up to do it again. But when I start, I'm only going to to two doses on the first few weekends and then decide if we can increase it. Not every body can handle the stress and herx. Tindamax is heavy duty. It could be why nothing is touching the OCD.

 

One thing you may want to ask your LLMD about is a possible pulsing schedule for the tindamax, or maybe taking a holiday. Sometimes when you stop, the body recovers and you realize there are great gains. It took about 12 days for my DS to settle down once we stopped the tindamax but then we enjoyed the best 5 months ever after that. So it could be that the tindamax is working "too" well and a holiday would be in order.

 

If there really is a serious herx going on, adding the turmoil of IVIG on top of that would seem to be way too much. So if nothing else, I think you made the right decision to not have both going on at the same time. Just my opinion, but I'd have done the same thing.

[laure]

Absolutely in your corner.

 

We did IVIG because I felt obligated to. How could I not give my kid every opportunity? Even tho I wasn't comfortable, I felt I owed it to my son to do "everything" possible. It was a bad experience for us. We were approved for a second one and I cancelled. It just wasn't the right treatment for us. Always trust your gut.

 

FWIW - tindamax every day is quite an aggressive approach, IMO. My DS only did tindamax two days a week and by the 5th week, we had to stop. The herx was just overwhelming. 18 months later, we're gearing up to do it again. But when I start, I'm only going to to two doses on the first few weekends and then decide if we can increase it. Not every body can handle the stress and herx. Tindamax is heavy duty. It could be why nothing is touching the OCD.

 

One thing you may want to ask your LLMD about is a possible pulsing schedule for the tindamax, or maybe taking a holiday. Sometimes when you stop, the body recovers and you realize there are great gains. It took about 12 days for my DS to settle down once we stopped the tindamax but then we enjoyed the best 5 months ever after that. So it could be that the tindamax is working "too" well and a holiday would be in order.

 

If there really is a serious herx going on, adding the turmoil of IVIG on top of that would seem to be way too much. So if nothing else, I think you made the right decision to not have both going on at the same time. Just my opinion, but I'd have done the same thing.

 

 

 

Thanks for the support LLM. The tindamax is something we have started and stopped 3 times now, the first two times pulsing it for two days on weekends, and the last try was daily, 10 months ago now, and her ART doctor feels she needs to plow through this at this point, with twice daily doses. Since she is not able to go to school, and really has the same symptoms regardless of what we do right now, I figure it is the time to try this. It can't really hurt at this point, haven't had a "good" day in 10+ months. Hoping the seroquel or tindamax can change that. Also, we have 2 LLMDs, the one recommending the IVIG is local, but her other doc in SF was absolutely non-committal as to whether or not she should have it. And I really respect the SF doc's opinion, so that swayed the decision as well. We can always to IVIG later...if needed.

[dcmom]

Laure-

 

I am in your corner! We are only treating pandas (not lyme), but have not done ivig. It certainly is a life saver for many, but makes others worse. I think you are really smart to try different interventions in a slow, methodical, one-new-thing-at-a-time way, only way to know what is working- and hang in there, something will.

[sf_mom]

I think you made the right choice for now.

 

I'll admit it was also a very hard/scary decision for us to stop hdIVIGs as well and we had improvement from treatments. Its now almost 3 years later since our last IVIG and I can't imagine doing another (but always reserve the right to change my mind if needed). We have seen much greater and continued gains from the right 'combo' of antibiotics than we ever did with the IVIG.

 

Daily tindamax can also be rough and especially if you have a biofilm problem on top of Lyme and all the co-infections. Its hard to say push through on daily dosage of tindamax or pulse..... Treating Lyme is not for the faint of heart and the extended herxs sometimes lasts weeks/months. BUT, I am hopeful you will find a ray of hope that she can get better soon.

 

Hang in there.

[laure]

Absolutely in your corner.

 

We did IVIG because I felt obligated to. How could I not give my kid every opportunity? Even tho I wasn't comfortable, I felt I owed it to my son to do "everything" possible. It was a bad experience for us. We were approved for a second one and I cancelled. It just wasn't the right treatment for us. Always trust your gut.

 

FWIW - tindamax every day is quite an aggressive approach, IMO. My DS only did tindamax two days a week and by the 5th week, we had to stop. The herx was just overwhelming. 18 months later, we're gearing up to do it again. But when I start, I'm only going to to two doses on the first few weekends and then decide if we can increase it. Not every body can handle the stress and herx. Tindamax is heavy duty. It could be why nothing is touching the OCD.

 

One thing you may want to ask your LLMD about is a possible pulsing schedule for the tindamax, or maybe taking a holiday. Sometimes when you stop, the body recovers and you realize there are great gains. It took about 12 days for my DS to settle down once we stopped the tindamax but then we enjoyed the best 5 months ever after that. So it could be that the tindamax is working "too" well and a holiday would be in order.

 

If there really is a serious herx going on, adding the turmoil of IVIG on top of that would seem to be way too much. So if nothing else, I think you made the right decision to not have both going on at the same time. Just my opinion, but I'd have done the same thing.

 

 

 

Thanks for the support LLM. The tindamax is something we have started and stopped 3 times now, the first two times pulsing it for two days on weekends, and the last try was daily, 10 months ago now, but then we stopped after 6 weeks when she was getting worse and worse with OCD. Now her ART doctor feels she needs to plow through this at this point, with twice daily doses. Since she is not able to go to school, and really has the same symptoms regardless of what we do right now, I figure it is the time to try this. It can't really hurt at this point, haven't had a "good" day in 10+ months. Hoping the seroquel or tindamax can change that. Also, we have 2 LLMDs, the one recommending the IVIG is local, but her other doc in SF was absolutely non-committal as to whether or not she should have it. And I really respect the SF doc's opinion, so that swayed the decision as well. We can always to IVIG later...if needed.

[JuliaFaith]

From our ND (Natureopathic doctor) perspective when I asked her about IVIG: She pointed to the people in her clinic doing IV treatments and said a lot of them have had blood products that brought other things along with it that has made them very ill. We still like to think that it is still a possibility if we need it in the future.

 

So glad IVIG has worked for some, but our dr. said it usually brings short-term relief. We are now looking at GcMAF, another blood product, but highly sanitized, to see if it might be an answer since my son has been sick over 2 yrs. now. His symptoms have been flu-like, with some OCD thrown in. He had about 6 weeks of 'starting to feel better' after doing heavy duty antivirals. But now after PANS flair the viral problem may be back. Will know soon from blood work.

 

Our Dr. also says that Mothers seem to have good gut feelings about things and she listens very carefully as I go thru the various things that I read on this forum and that I am thinking about. It usually costs more for the visit but it is also helpful and probably steers the treatment a bit. Hopefully for the better!

 

So long story short, you probably did the right thing! Best wishes on finding answers and healing!

[sf_mom]

JuliaFaith not get too off topic but something stuck about your post and that was 'flu like symptoms'.

 

I recently heard that the ticks in Northern CA have a strain of Borrelia that is more prevalent then typical BB and it is Borrelia Miyamotoi a "relapsing fever" type of borrelia and there is no diagnostic test available. If its in Northern CA I am sure its up your way since its a known TBI in Russia. I am wondering if maybe your ART individual is just missing the type of Borrelia. If you google it, you'll find some interesting information that might relate to your son's situation.

[JuliaFaith]

Thank you SF mom, your so sweet. Will definitely look into it!

 

Take care.

[sf_mom]

Juliafaith. Check your PM as I've provided better statistic on Miyamotoi in CA.