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Michel12 feeling hopeless


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Hello all I had made a few posts a couple months ago about starting IVIG. I have finished my 4th month and we are going to stop I think because we did not notcie much improvement. I am feeling rather hopeless to tell you the truth. I dont think we want to try pex or rituximab. Just see if we can do things with medication. I am going to try PAxil switching from clomipramine which ive been on for five years. I cqant get a high dose on the clomipramine because of my POTS and when I did I was miserable but it did keep me stable. I really hope this paxil works for my deppresion. Its so hard because the antideppresent has to treat three things at once. My OCd, deppresion and chronic pain. It will be a miracle if it relieves all three. Ive just been wasting away in pain at home and feeling hopeless. Its hard to feel hopeful for paxil working because ect did not even work. My naseua and gastro symptoms have gotten so worse and I wonder if its being on these antibiotics for so long but alas im still failing at gluten free diet because im so deppresed and hopeless I have to eat the things I like. I saw a guy about pain and he recommended things like topamax, flexeril, etc. I might try botox in my neck(where most of the pain is at). Im just hoping I can get to a high dose with this antideppresent because I think thats going to spearhead me being stable by taking the edge and stress off. And as for the Pandas, I tried valtrex but it made my agitation and deppresion worse for some reason each time I tried it. I dont want to give up on it because I wonder if it could help my chronic fatigue syndrome too. Anybody have experiance with symptoms getting worse after valtrex? I talked to a parent who does not have pandas but took it for another reason and she got a splitting headache each time she took it. Also we may try somehting novel like an nmda receptor drug called memantine. If anyone wants to talk to me please pm me lord knows I need someone to talk too.

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Hi Michel,

I'm sorry you are struggling so. I am just tuning in, and forgive me if this has been asked and answered already, but have you been evaluated and /or tested for Lyme by a LLMD? Your symptoms sound like a lot of us here, who began as PANDAS and later found Lyme and co-infections to be the larger problem.

It can make all the difference.

Edited by laure
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Hi Michel,

I'm sorry you are struggling so. I am just tuning in, and forgive me if this has been asked and answered already, but have you been evaluated and /or tested for Lyme by a LLMD? Your symptoms sound like a lot of us here, who began as PANDAS and later found Lyme and co-infections to be the larger problem.

It can make all the difference.

Hi Laure I have not been tested or eval. by a llmd but we are looking for one. I have been on minocycline and keflex for a year though. My current ped is unsure if I have lyme but treats me with the minocyline. He is more consevative then a llmd is and thiinks the llmd can never be sure if I have lyme but has said I could give it a try. My blood test has always come back negative and I have gotten the western blot and had spinal fluid checked. But I guess the llmd would be able to know based on my symptoms? My doctor is just worried that the llmd might lead us down the wrong path.

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Michel,

Lyme can be very difficult to diagnose, and many people don't test as positive until the body begins to mount an immune response, sometimes several years after being in treatment. Most llmds treat clinically in the absence of a positive test if the patient has enough symptoms. The new book "Why Can't I Get Better?" by Dr. Richard Horowitz has a symptom checklist that is a good diagnostic tool, for starters.

Our dd14 only began showing up positive for Babesia after 3 1/2 years of treatment for it based on her symptoms of night sweats, shortness of breath, and OCD. Thank God her doctors treated her for that in the absence of positive bloodwork. Where are you located?

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Hi Michel,

 

Here's my son's story in a nutshell: He was 12 when he became seriously ill. Bedbound for about 6 months. Initially dx with immune deficiency, started on IVIG. Some improvement, doing ok for next 3 years. Then mysterious onset of PANDAS symptoms. Again bedbound, left school, but this time became seriously anxious, OCD and depression, some psychosis, would not leave his room most of the time. Became a different person. This went on for about 2 years. We were very concerned for his safety during this whole time and concerned inpatient many times, but never did because of all his sensitivities. He was treated with oral abx for the PANDAS and steroids as well. He had his tonsils out. We flew to Connecticut to consult Dr.B and do high dose IVIG, and we did this for a year, flying back and forth between Seattle and CT. He did not improve much. In 2012 he was dx with Lyme and coinfections by a LLND in Seattle. Started Lyme treatment. Still did not improve much until we started intensive IV abx 6 months ago. This is the first time in 8 years that we have seen significant sustained improvement and now we have some hope that he can get better. Also he takes celexa for depression and medical cannabis for his pain, which is the only thing we have found that reliably helps. Both of these have been hugely important in getting him through the symptoms so he can continue treatment. If you are in a state that does not allow medical MMJ you can try a product called high CBD hemp oil , which is legal everywhere, from Bluebird Botanicals. Many people find this has similar results as MMJ, though it is pricey:

 

https://www.bluebird-botanicals.com/CONCENTRATED_CBD_Oils_2.php

 

I second the Lyme dx. My LLND does phone consults if you would like to try talking with her. There are many good docs out there, ILADS has a list they will send you: http://ilads.org/ilads_media/physician-referral/

 

I know how much you are suffering, please hang in there. Keep looking for answers and don't give up. I will ask him if he would like to connect with you and offer you some support.

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Michel,

Lyme can be very difficult to diagnose, and many people don't test as positive until the body begins to mount an immune response, sometimes several years after being in treatment. Most llmds treat clinically in the absence of a positive test if the patient has enough symptoms. The new book "Why Can't I Get Better?" by Dr. Richard Horowitz has a symptom checklist that is a good diagnostic tool, for starters.

Our dd14 only began showing up positive for Babesia after 3 1/2 years of treatment for it based on her symptoms of night sweats, shortness of breath, and OCD. Thank God her doctors treated her for that in the absence of positive bloodwork. Where are you located?

I have read a bit of that book. I'm located in Maryland and we were looking at a Dr. F in Rockville. IF you have any suggestions please tell.

 

Hi Michel,

 

Here's my son's story in a nutshell: He was 12 when he became seriously ill. Bedbound for about 6 months. Initially dx with immune deficiency, started on IVIG. Some improvement, doing ok for next 3 years. Then mysterious onset of PANDAS symptoms. Again bedbound, left school, but this time became seriously anxious, OCD and depression, some psychosis, would not leave his room most of the time. Became a different person. This went on for about 2 years. We were very concerned for his safety during this whole time and concerned inpatient many times, but never did because of all his sensitivities. He was treated with oral abx for the PANDAS and steroids as well. He had his tonsils out. We flew to Connecticut to consult Dr.B and do high dose IVIG, and we did this for a year, flying back and forth between Seattle and CT. He did not improve much. In 2012 he was dx with Lyme and coinfections by a LLND in Seattle. Started Lyme treatment. Still did not improve much until we started intensive IV abx 6 months ago. This is the first time in 8 years that we have seen significant sustained improvement and now we have some hope that he can get better. Also he takes celexa for depression and medical cannabis for his pain, which is the only thing we have found that reliably helps. Both of these have been hugely important in getting him through the symptoms so he can continue treatment. If you are in a state that does not allow medical MMJ you can try a product called high CBD hemp oil , which is legal everywhere, from Bluebird Botanicals. Many people find this has similar results as MMJ, though it is pricey:

 

https://www.bluebird-botanicals.com/CONCENTRATED_CBD_Oils_2.php

 

I second the Lyme dx. My LLND does phone consults if you would like to try talking with her. There are many good docs out there, ILADS has a list they will send you: http://ilads.org/ilads_media/physician-referral/

 

I know how much you are suffering, please hang in there. Keep looking for answers and don't give up. I will ask him if he would like to connect with you and offer you some support.

Your son's story mirrors alot of mine because that was around the same time I got sick. I would be happy to talk to him.. You can pm me. Thank you for the refferals

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