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I agree that you may need a multi disciplinary approach. I think antibiotics, whether it's by mouth or IV may be essential. You may need to start my getting your gut primed with probiotics for a few weeks before starting and being deligint about taking them while on your antibiotics. IVIG would follow after having some antibiotics on board for a while and then a wonderful inpatient program. I know you can do this. Treat the core issue first then work on the CBT / ERP. You have gotten some great advice from the others who have responded. Take all into consideration. Best of luck to you. I am so sorry you are going through this. Very unfair.

 

Dedee

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Just a thought as we are currently trying this, but have you looked at GcMAF.eu at all? We are mostly trying it for viruses and immune system.

 

Did notice when son started on it 2 weeks ago, his OCD got as bad as it has been, along with body inflammation. This told us that it was working but we are going slow on dosage until he is ready to increase.

 

It seems expensive, but at my son's dosage it is much less (and much less than IVIG if you have to pay for it). Cost is for 2 months worth, but it will probably last us 4 months or more.

 

Best wishes on your healing journey.

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The OCDI in Belmont, MA is an amazing place. It is a residential program. My son had long term abx, 7 ivig's and 5 weeks at the OCDI. He is 95+% recovered. You will get there--don't give up hope.

 

 

Just a thought as we are currently trying this, but have you looked at GcMAF.eu at all? We are mostly trying it for viruses and immune system.

 

Did notice when son started on it 2 weeks ago, his OCD got as bad as it has been, along with body inflammation. This told us that it was working but we are going slow on dosage until he is ready to increase.

 

It seems expensive, but at my son's dosage it is much less (and much less than IVIG if you have to pay for it). Cost is for 2 months worth, but it will probably last us 4 months or more.

 

Best wishes on your healing journey.

Thank-you both, this is good advice.

I def. am willing to try abx again but I tried them for about 8 months and got really bad C-diff so Dr. T was hesitant.

 

In regards to a treatment program, I don't think I could do it. I also have M.E./CFS and am mostly bedridden and house-bound, I have very very severe fatigue and excessive day-time sleepiness so often times I can't even make it to my psychologist's appt's. And half the time I am there, I am falling asleep. I have days where I physically cannot get out of bed so I don't know how this would translate in a facility. It's still a good thought though and something to jot down.

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Just a thought as we are currently trying this, but have you looked at GcMAF.eu at all? We are mostly trying it for viruses and immune system.

 

Did notice when son started on it 2 weeks ago, his OCD got as bad as it has been, along with body inflammation. This told us that it was working but we are going slow on dosage until he is ready to increase.

 

It seems expensive, but at my son's dosage it is much less (and much less than IVIG if you have to pay for it). Cost is for 2 months worth, but it will probably last us 4 months or more.

 

Best wishes on your healing journey.

Have not tried GcMaf yet. It's on the list, but I don't want to try too many things at once right now and I get confused with what is doing what.

 

Have you guys noticed any improvements yet? I hear that it is good for CFS also.

 

What about side effects?

 

Gcmaf and methylation process are on my list, but further down the road.

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Ophelia --

 

I know that you have listed a number of medical conditions, including CFS, which is probably causing your fatigue.

 

However, I want to say that I had horrible insomnia and horrible horrible fatigue that turned out to be my ONLY symptoms of hypothyroidism. I did not have any of the other symptoms. Very shortly after treating my hypothyroidism, I felt totally different.

 

If you haven't been tested for thyroid issues, I strongly urge you to do so. I have also just recently learned that being hypothyroid can itself cause symptoms of OCD.

 

Most doctors will want to order just a TSH test (thyroid stimulating hormone). This is a good place to start, and any value over 2.5 (or even 2.2) is considered by the experts to be signs of hypothyroid -- and the higher the TSH, the more hypothyroid you are. Please note that the ranges the labs report say that anything under about 4.5 is considered "normal", but many (even mainstream) experts disagree with this and use the 2.2 or 2.5 range for their own patients.

 

If the TSH is within normal limits, then you can also ask for free T3, free T4 and reverse T3. If these are abnormal, or are at the "wrong" end of the normal ranges, that can also be a signal of hypothyroidism. Please note that even if the values are in the normal range, if the free T4 is in the higher end of normal while the free T3 is in the lower end of normal, this can also signal hypothyroidism as it means the body isn't converting the hormones the way that they should.

 

Insurance should pay for these tests, and Dr. T has been willing to order them in the past. The results come back within a few days.

 

If you go this route and want info on interpreting your results, there is a good website called stopthethyroidmadness.com. It has a calculator where you can enter your different values to see what they mean. Just be aware that the different tests are often reported in different units of measurement and you have to select the correct one for each -- the webpage will make these available, but you have to be aware.

 

I know it may seem unlikely that this may be behind your issues, but it is a simple test and pretty easy to treat. It was life changing for me. I hope it may be for you, as well.

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Just a thought as we are currently trying this, but have you looked at GcMAF.eu at all? We are mostly trying it for viruses and immune system.

 

Did notice when son started on it 2 weeks ago, his OCD got as bad as it has been, along with body inflammation. This told us that it was working but we are going slow on dosage until he is ready to increase.

 

It seems expensive, but at my son's dosage it is much less (and much less than IVIG if you have to pay for it). Cost is for 2 months worth, but it will probably last us 4 months or more.

 

Best wishes on your healing journey.

Have not tried GcMaf yet. It's on the list, but I don't want to try too many things at once right now and I get confused with what is doing what.

 

Have you guys noticed any improvements yet? I hear that it is good for CFS also.

 

What about side effects?

 

Gcmaf and methylation process are on my list, but further down the road.

Have not noticed any improvements yet, but it has been only 3 weeks. There are no side effects from the Gcmaf as it is already in your body. But as your immune system wakes up there can be inflammation. www.betterhealthguy.com has a blog about his experience which is interesting to read. Also, Facebook has a page where people post about their experiences in case you are interested.

 

You can start slow. Some are starting at .01 mL and gradually increasing. Just heard from one person that if you are at .02-.03/week there are ASD kids responding so she figures it is working. My son started at .05 2xweek (every 3.5 days-which is a good way to go) and is staying at that dosage until he is ready to increase, so he can finish school. Twice a week is good because if your inflammation gets too high, it slowly goes down afterwards, and you can adjust next dosage accordingly. My son did react quickly to it with inflammation. He has had 3 yrs. of flu-like symptoms and exposure to some mold as well (just heard from dr. that the mold and viruses co-exist symbiotically!).

 

Best wishes on your treatment.

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Hi, Just wondering if you've been evaluated by a Lyme doctor and whether you've looked for possible mold in your living environment. Many of the parents on this forum have found that Lyme is involved in their children's (and sometimes their own) illness and treating for Lyme helps or eliminates OCD and other symptoms of PANS, as well as physical symtoms such as pain, fatigue and sleep issues. Others have found that mold is also a factor and remediating mold in the home or moving helps them move toward wellness. Both have been the case for us. Many of your symtpoms/disorders are also symptoms of mold illness and/or Lyme.

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Hi, Just wondering if you've been evaluated by a Lyme doctor and whether you've looked for possible mold in your living environment. Many of the parents on this forum have found that Lyme is involved in their children's (and sometimes their own) illness and treating for Lyme helps or eliminates OCD and other symptoms of PANS, as well as physical symtoms such as pain, fatigue and sleep issues. Others have found that mold is also a factor and remediating mold in the home or moving helps them move toward wellness. Both have been the case for us. Many of your symtpoms/disorders are also symptoms of mold illness and/or Lyme.

I did do lyme treatment for awhile - long term abx - and didn't see any improvements at all. I've been tested in many ways many times and there just isn't any evidence that I have lyme or co-infections other than the low cd57. I am quite certain without any doubt that I have M.E./CFS; I belong to a social network for lyme and cfs patients and my symptoms are uncannily and eerily similar to the other cfs patients not to mention I have active viruses and chronic viruses right now in my body (coxsackie A and B and parvo - active).

 

Thanks though.

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Just found out that I chose Valcyte over GCmAF last year and in hindsight, I wish we would have just started GC. The Valcyte is actually more expensive right now than GC. Also glad we waited because Dr.s know much more about using it as a treatment than last year. :)

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