Jump to content
ACN Latitudes Forums

Michel12: IVIG update


Recommended Posts

If you have read my posts before I had IVIG Dec. 4th. I am still not feeling the beneficial effects from it. As far as pandas treatment goes I am on Keflex Minocycline and Celebrex. The minocycline which was the drug that started me on the path to wellness has seemingly lost most of its effect. I do not want to go off it though because I have before and I get much worse and it seems ot have a novel effect on the brain. I am on 200mg though and do not think I cant increase the dose anymore. The keflex we added because of the sore throat before I got my tonsils out and I dont know if it does much. The clebrex or minocin is at 4.5mg and not benefitting my head pain enough. I am looking for medicines to add that will hopefully abate my chronic head pian and agitation like the minocycline did. We tried low dose naltrexone and that made me worse. My next IVIG infusion is Jan 7th and a double dose. I am starting to lose hope about it because it has been almost a month since the first one and not what I expected.

I had also been on the augmentin at the saving sammy dose but it did not work as well as the minocycline and we switched back. Any ideas for treatment?

Link to comment
Share on other sites

Youve been through a lot. Thanks for sharing your story.

 

Who is your doc? I thought that it takes 3-4 months for IVIG to take effect. What is the rationale for choosing different prophylactic antibiotics? I know minocycline was the drug as of two years ago.

 

Also, is your insurance covering this? It's bad enough with little kids, adult dosing and double dose must get expensive.

Edited by dasu
Link to comment
Share on other sites

Youve been through a lot. Thanks for sharing your story.

 

Who is your doc? I thought that it takes 3-4 months for IVIG to take effect. What is the rationale for choosing different prophylactic antibiotics? I know minocycline was the drug as of two years ago.

 

Also, is your insurance covering this? It's bad enough with little kids, adult dosing and double dose must get expensive.

My Doctor is Dr. L. The reason I was asking about a med change is because I have been on them for a long time and have sunk to a horrible position where I cant take the symptoms of intense head pain and agitation anymore. On the pychiatric side i'm on 2mg ativan 3x daily and its still not helping. It has caused a lot of flares and for some reason the medicine is not benefitiing me as it has before. I do not want to change the minocycline. Minocyline really helped these symptoms the early months I took it. My hope was to find another drug with the properties like minocyline's to reduce symptoms while I get the IVIG. Minocycline was not origionally given for prophylatic effect but to reduce pro-inflammatory cytokines for major deppresion.

Link to comment
Share on other sites

 

Youve been through a lot. Thanks for sharing your story.

 

Who is your doc? I thought that it takes 3-4 months for IVIG to take effect. What is the rationale for choosing different prophylactic antibiotics? I know minocycline was the drug as of two years ago.

 

Also, is your insurance covering this? It's bad enough with little kids, adult dosing and double dose must get expensive.

My Doctor is Dr. L. The reason I was asking about a med change is because I have been on them for a long time and have sunk to a horrible position where I cant take the symptoms of intense head pain and agitation anymore. On the pychiatric side i'm on 2mg ativan 3x daily and its still not helping. It has caused a lot of flares and for some reason the medicine is not benefitiing me as it has before. I do not want to change the minocycline. Minocyline really helped these symptoms the early months I took it. My hope was to find another drug with the properties like minocyline's to reduce symptoms while I get the IVIG. Minocycline was not origionally given for prophylatic effect but to reduce pro-inflammatory cytokines for major deppresion.

 

Here is some talk about minocycline and rationale. http://www.jneuroinflammation.com/content/10/1/43

Link to comment
Share on other sites

We (well, my kids) see the same doc just a different protocol? My kids are 5 and 7 and can't communicate many of the feelings etc. My daughter might relate to head pain and agitation though.

 

Thanks for the info.

Edited by dasu
Link to comment
Share on other sites

I had constant head pain for a year and a half before I figured out it was food allergies. Eliminating gluten, and later dairy, did the trick. I know everyone is different, but if you haven't already tried eliminating these foods, it might be worth a try. Food allergies can definitely cause headaches. Soy and corn are also very common allergens.

 

Also, I recently found out that an "icepick" headache (stabbing pains) is often caused by Bartonella. If its that type of pain, you might want to consider looking into Bartonella.

Link to comment
Share on other sites

Have you tried steroid taper at any point? DS did augmentin 875 for a few months, then added a three week steroid taper. He started seeing positive changes during steroid use, but lost them again after he was done w/the prednisone. Doc said to bear with him. Two months after the steroids, DS went into remission. Doc said once infection is fully gone, brain inflammation needs to die down for symptom abatement and this takes time.

Link to comment
Share on other sites

All I can say is, hang in there and keep trying stuff until you find what works for your body. We've been working with my son's multiple diagnosis- PANS, Late stage Lyme, immune deficiency, babesia- for 7 years now, and we just feel like we are starting to get a handle on it in the last 4 weeks, his symptoms are finally starting to improve a little bit so we feel like at this point he is not getting worse and he MAY be starting to improve.

 

A few things I would recommend off the top of my head: make sure your methylation cycle is working correctly- your doc should know to screen you for methylation cycle defects. If this hasn't been done then you need to find someone who can help you with this. Methylation controls detox in the body.

 

Cannabis has been extraordinarily helpful for controlling my son's discomfort as he works toward recovery. I don't think he would have made it if it weren't for the help he gets for his anxiety and pain from the cannabis. He takes both high CBD caps and vaporizes MMJ. We are in a state where MMJ is legal. I know that you can get high CBD tincture made out of hemp anywhere in the country. It can also be very helpful for pain and anxiety. Bluebird Botanicals is one source for this.

 

IVIG takes a long time to work. My son is on it and it was months before we noticed a difference. And it was slow, and it was definitely not the only thing he needed. He has in the past 10 weeks started on IV therapy- IV antibiotics, IV chelation, and IV supplementation, and this seems like its important for him. We go to a functional medicine doc/naturopath for these treatments.

 

Please, hang in there and KEEP SEARCHING, keep reading, keep trying everything that is recommended because you will find your way if you keep looking for answers. Its probably going to be more complicated than abx and IVIG, it certainly has been for us.

Link to comment
Share on other sites

LDN made me worse too. I also couldn't tolerate minocycline even at a tiny dose.

Wish I could help. There needs to be better treatment for ocd but I've heard they don't even know what causes it. Thoughts for you.

Link to comment
Share on other sites

Michel12--

 

Thanks so much for letting us hear from you! I'm glad that you continue to receive treatment and to consider carefully your ongoing options for treatment. Please try to focus on the fact that you do have ongoing options for treatment and healing/recovery. Yours is not an easy path at this time, but continue to seek help and surround yourself with hope.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...