perhaps a little advice! Post Viral Chronic Fatigue Now?

[HopeinHIM]

Our DS12 went through Bart treatment and then prophylactic PANS Zithromax for past few years. Both Lyme's Doc and PANS doctor are very well known and reputable. We finally had a top Immunologist enter into our insurance so we switched. This Immunologist treats and understands PANS. She diagnosed our son w/chronic fatigue and POT's like symptoms . NO LYMES!! He is too tired to go out most days. This new immunologist suggested removal of all dairy and grains (even clean products) as well. HE HAS NOW LOST 15LBS. . We have doubled his calories and no gain. So this plus the chronic fatigue is awful to watch. This doctor claims its all Dysbioses from too much anti biotics in the past and that combined with some immune abnormalities and leaky gut has created this "Post Viral Chronic Fatigue". Yes we always gave good pro biotics! Our son feels he has better thinking on the diet for sure but he is so weak. Much of the LYMES like Bart symptoms are quieted down (not gone) and what remains is complete exhaustion. It's been this way since February. Immunologist says the Lyme's piece is FINISHED and it's not one specific pathogen. She feels that If we treat with further meds we will do more damage!! But the old Lyme's doc says it may be Bart still. UHG!! I am doing some herbs like Houttynia, Kudzu, DanShen and immunologist has him on some cycles of Tinizidol and diflucan for the Dysbioses. She says that these meds cycled with diet changes and time will change things. With the wt loss he now doesn't bounce back after his fatigue attacks. All clinical diagnoses too. Labs only say weak immune system. ANYONE have any thoughts??

[mama2alex]

When some symptoms aren't resolving, I think it's always a good idea to look into common root causes that you haven't previously investigated. You know best what those are, but I didn't see any mention of mold - which is more common than people realize - methylation, or viruses.

[Gpookie]

I suffered Post viral chronic fatigue after catching mono from my sons.

 

Zero growth from any type of gut bacteria. Only thing that cured me was TONS of probiotics (600 bln cfu+ per day) and liver cleanse. Took 2 years :-(....

Edited August 24, 2016 by Gpookie

[HopeinHIM]

When some symptoms aren't resolving, I think it's always a good idea to look into common root causes that you haven't previously investigated. You know best what those are, but I didn't see any mention of mold - which is more common than people realize - methylation, or viruses.

I have done the 23&Me for Methylation issues and we addressed some viruses with herbals but the Mold is something I only hear about. It seems daunting to me. Since this health debacle, we have moved several times so I just assumed that all of the homes couldn't be causing mold issues w him. I had our first home completely looked at when this first hit our son. I purchased a BlueAir room cleaner that takes out mold. That placed in his room as well. Are there a few good top products you would recommend for mold?

[sf_mom]

Can you speak to any other symptoms than fatigue? Does he have shortness of breath? Any pain...... feet pain first thing in the morning, thigh pain, etc?Does he have afternoon fatigue/pain at base of head, throbbing neck and shoulders pain making it feel like he needs to lay down immediately and can hardly hold his head up?

[mama2alex]

For very sensitive people whose immune systems are involved, mold is not just a matter of whether you are living in a moldy home at the moment - it's a toxic buildup in the system that can cause things to go haywire and needs to be treated. An air filter or other "product" isn't the answer. Dr Shoemaker developed a treatment protocol, so his website Survivingmold.com can be a great resource. You can also find a doctor who knows what blood tests to do through this website. You can start investigating this possibility right away by doing an ERMI test on your home - you order the test kit from Mycometrics, and just vacuum up some dust and send it to them. If you did some test other than ERMI on your first home, (like air testing) I wouldn't rely on that. I can help you read the test results when they come back - just PM me. My doc gave me a "key" to interpret the raw numbers.

 

Here's a good article to start understanding the whole mold toxicity/CIRS thing: https://chriskresser.com/5-things-you-should-know-about-toxic-mold-illness/

[HopeinHIM]

Can you speak to any other symptoms than fatigue? Does he have shortness of breath? Any pain...... feet pain first thing in the morning, thigh pain, etc?Does he have afternoon fatigue/pain at base of head, throbbing neck and shoulders pain making it feel like he needs to lay down immediately and can hardly hold his head up?

No to most of these. I would say just overall no energy, super tired and weak. All things overwhelm him. Then for a few days he is normal energy again only to drop into this fatigue again and again.

[HopeinHIM]

 

Can you speak to any other symptoms than fatigue? Does he have shortness of breath? Any pain...... feet pain first thing in the morning, thigh pain, etc?Does he have afternoon fatigue/pain at base of head, throbbing neck and shoulders pain making it feel like he needs to lay down immediately and can hardly hold his head up?

No to most of these. I would say just overall no energy, super tired and weak. All things overwhelm him. Then for a few days he is normal energy again only to drop into this fatigue again and again.

 

O yes to answer your question as to times of day most fatigued: he really can't do much most days (good or bad days included) before 1: 00pm Forget anything in the morning at all. He was diagnosed w POTS as well but again i feel this is a symptom not a diagnoses. Thank you!!!

[HopeinHIM]

For very sensitive people whose immune systems are involved, mold is not just a matter of whether you are living in a moldy home at the moment - it's a toxic buildup in the system that can cause things to go haywire and needs to be treated. An air filter or other "product" isn't the answer. Dr Shoemaker developed a treatment protocol, so his website Survivingmold.com can be a great resource. You can also find a doctor who knows what blood tests to do through this website. You can start investigating this possibility right away by doing an ERMI test on your home - you order the test kit from Mycometrics, and just vacuum up some dust and send it to them. If you did some test other than ERMI on your first home, (like air testing) I wouldn't rely on that. I can help you read the test results when they come back - just PM me. My doc gave me a "key" to interpret the raw numbers.

 

Here's a good article to start understanding the whole mold toxicity/CIRS thing: https://chriskresser.com/5-things-you-should-know-about-toxic-mold-illness/

I am reading up on this and when I see Julie McIntyre my herbalist , I will get some herbal remedies to address these. Also ordering Blue Air for his room. The one they recommend in this site is way $$. Do you have any thoughts about a room Hep?? He is in his room most of his days so this might really help. I did NOT do any other mold testing in this particular home other than basic. But again, we have moved around to several homes since this all started.

[HopeinHIM]

Can you speak to any other symptoms than fatigue? Does he have shortness of breath? Any pain...... feet pain first thing in the morning, thigh pain, etc?Does he have afternoon fatigue/pain at base of head, throbbing neck and shoulders pain making it feel like he needs to lay down immediately and can hardly hold his head up?

Everything you mentioned he has had in the past. Babs and bart were in the picture for sure and we treated Bart with three different anti B for three months. The new Immune doc it's enough and time to heal gut and get rid of candida. I am not sure if we should continue treating Bart and Babs or stop. The Babasia we have never really done meds only herbs for that. All seems to have calmed down for now but not sure if its just below the surface. The weakness and fatigue that comes and goes is the main concern for now. Having NO definitive answers is so painful!! NO definiteness for years!!