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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

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Haven't been the same since anti-viral trial.

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My neuro/pandas doctor put me on valtrex for a few months but I started getting horrific side effects rather abruptly: nausea, puking, inability to eat or drink, diarrhea, extreme headaches, much worse fatigue, etc. Basically all the less severe side effects.

 

This was a month ago, I called and they simply said to discontinue it and they'd "send labs" to check titers. I haven't received any labs and neither my calls nor emails have been returned.

 

Lately I can't sleep, it's been 2 nights now without sleep and my brain feels like it's rotting. My ocd is much worse than it's ever been, I feel like I have no control at all over my mind. My bladder is really really bad and in urgent pain all the time. I still have a feeling of being "sick" more so than usual and differently than usual. Something is off but I have no idea what to do.

 

I just received disability but no insurance so I don't have a PCP at the moment and no local doctor to help. I went to urgent care and they just gave me something for nausea. I feel as though I need a "new" pandas/pans doctor but I am much too ill to travel, my mother and I have to move and don't have the money.

 

Any tips would be greatly appreciated in reference to any of the problems listed above.

 

Lastly, I read Dr. najjar's article on auto-immunity + neuro-inflammation = psychiatric illness and I think it all definitely applies to me; in the past 10 years of being ill we've never been able to explore auto-immunity or approach any of that type of treatment.

 

- Ophelia

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Also, I will be getting united healthcare through medicaid soon and will choose a PCP.

I was looking into healthcare advocates but they seem to be costly.

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Has your liver been checked? Read on, I believe WWW.betterhealthguy.com, that not being able to handle treatment may be a liver problem. Lots of good stuff on this site!

 

Hope you can find a descent Dr.!

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I was put on Valtrex 3 times daily and felt the same. It was intolerable for me. My EBV is still very high and I am addressing it in other ways. It is believed by some Valtrex will only suppress the virus not help to lower load.

I am now addressing titers with IV Vitamin C, IV Glutatione and Ozone Therapy. I may look into Nagalase and GcMaf Shots if those titers do not come down. Fatigue is one of my few remaining symptoms. I am also going through chelation and on those days fatigue is a lot worse as well as having some insomnia. BUT when I am not on Chelation cycle those therapies are helping tremendously. Have you checked for heavy metals yet?

Here is a little blurb.

"Heavy metals in the body, particularly mercury, causes the body to excrete magnesium.
The body in its wisdom, will bind a magnesium molecule to a heavy metal particle. This negates the positive charge of the heavy metal and it is then excreted safely from the body. This is a subject described in greater detail in this helpful article about Magnesium and Toxins.
For now, understanding that most every one has heavy metal body burden, and the degree it affects individuals , often correlates to the available magnesium . The body will excrete magnesium at rates faster than we can replenish through normal diet if there is a high heavy metal load.

Remove the Heavy Metal load and increase Magnesium.I have experienced first hand, and seen in a clinical situation huge benefits using this protocol. So, if poor sleep or insomnia is a problem, and interferes with the quality of your life, you need help. Try the simple self help steps above. We may find you have a magnesium deficiency as a result of a toxic body burden.

Detoxification + Magnesium = Sleep ! Do some detective work and purchase a simple Heavy Metal Test Kit and see immediately the excretion of heavy metal in a urine sample. Showing positive for heavy metals, demands asafe heavy metal detox protocol and more magnesium."

Edited by SF Mom

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Guest

Thanks.

 

@sfmom Yes the valtrex became intolerable. I couldn't eat for about 5 days. Do you know much about equilibrant? My old cfs doctor put me on it, it was created by a doctor here and supposed to take care of enteroviruses but I get side effects from it (not nearly as bad).

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I am not familiar with Equilibrant. As for the Valtrex when I reported symptoms to my Dr. he had me stop it immediately. I feel for you as viruses can be very difficult to lower load. I also had a gagging reflex kick in with Valtrex. I could still eat but it was very tentative eating.

 

Again, if you haven't checked for heavy metals I would definitely put it on the list. You might check also check for vitamin and mineral deficiencies if you haven't all ready. You need fuel (vitamins and minerals) to fight those viruses and what other bugs you may have.

 

Here is a website that you can order test kits directly with Dr.'s orders. No need for Dr. appointment to request test kit.

 

Vitamin and Minerals: http://www.integrativepsychiatry.net/vitamin_analysis.html

 

Heavy Metals: http://www.integrativepsychiatry.net/heavy_metals_test.html

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