CVID and Pandas/Pans/Lyme

[cobbiemommy]

How is CVID (Common Variable Immune Deficiency) related to Pandas/Pans or even Lyme? I'm curious because my son did so much better after IVIg, but now he is horribly fatigued while being treated for Lyme. We are on our 15th month of treating Lyme and Friends and my gut says that we are missing something big in this picture. Before anyone replies about mold, we know that is not our issue. But there is definitely something we are missing.

 

Time to go pick up DS, but will elaborate more later.

 

Cobbie

[tpotter]

How is CVID (Common Variable Immune Deficiency) related to Pandas/Pans or even Lyme? I'm curious because my son did so much better after IVIg, but now he is horribly fatigued while being treated for Lyme. We are on our 15th month of treating Lyme and Friends and my gut says that we are missing something big in this picture. Before anyone replies about mold, we know that is not our issue. But there is definitely something we are missing.

 

Time to go pick up DS, but will elaborate more later.

 

Cobbie

 

 

OMG...this is so much like my DS. I keep saying the same thing...we are missing something (we're in our 14th month of treating for Lyme). I do know that he still has bartonella, because even though the rash went down a lot during IV abx, it's still not gone, and keeps getting slightly worse, then slightly better.

 

Now, we're dealing with strep again (even I have it...was in bed all day Friday and Saturday, and most of the day yesterday...my throat still hurts!) But, something is still missing. Also, in addition to checking for mold, we are also doing supplements, applied kinesiology (from a top notch doctor), lyme, PANDAS, but something is missing.

[smartyjones]

can't say this is your issue -- but viruses have been a big issue for ds.

 

first - strep -- pretty classic onset presentation -- 100% remission when on the right abx -- but backslide when off

 

then - lyme -- not classic symptoms of aches etc -- i think likely underlying congenital to add to the bucket to overflow but not major symptom producer. no coinfections, but parasites and viruses.

 

various viruses have been troublesome for the past year for him -- trouble kicking them or they return after being gone. tpotter -- didn't you say viruses were a discussion at the texas conference?

 

we have not tested for immune deficiencies. i am now wondering the role of this possiblility in trouble fully kicking these viruses for good.

 

you may want to check out toxoplasma gondii -- traditional drs often think of it in terms of gi issues. dr t was aware of it a year or so ago and referred a couple articles. our dr told me about an article --something like 'crazy for cats'. it's the parasite that is why pregnant women are cautioned to not change cat litter. is linked with schizoprenia in more than one study and other mental health issues.

[eljomom]

if ivig helped a ton, and lyme treatment is NOT helping, I would just guess that maybe it wasn't lyme? I know, I will be hated for saying that by some. I still believe that there are people being treated for lyme "clinically" that fit the wastebasket diagnosis....no positive tests, just "clinical" lyme diagnosis based on neuropsych symptoms only, when it might not be lyme. EVEN WITH positive Igenex. I have looked at Igenex, and still think that it is picking up +'s on some bands that are not actually lyme, but yet it's being called positive for lyme.

 

my personal feeling at this point, is that in some kids, Pandas triggers an autoimmune response which then comes and goes with infections. I think in other cases, while there may still be an infectious trigger, it is "THE TRIGGER" that switched on the gene in predisposed people (predisposed to having ocd, tics, etc...).

[sf_mom]

I would say viruses too (potentially XMRV) and also Babesia.

 

For our family, we did a ton of viral testing and have HHV6, Coxsackies, Epstein Bar and XMRV. We have treated viruses in our older DS for 1 1/2 years with Oil of Oregeno, then hd Olive Leaf Extract. Finally, we treated for six months of Virographis (Andrographis) and Enygstol..... it seems to have done the trick for two of three children so far. Third child still needs to be rechecked for viruses. You also might want to consider rechecking or a trail treatment course for Babesia. Often the immune system can be so suppressed by other infections/viruses and test results are falsely negative until well into treatment. My own fatigue has started up again by aggressively going after the Babesia.

 

You also might want to do a comprehensive stool analysis via Metametrix which will look for parasites 'unknown' can often indicate Babesia along with other TBI infections and look for worms, fungus, yeast, inflammation, enzymes, etc. Obvious signs of yeast is a white tongue, obvious signs of fungus is a black tongue.... like you have just eaten chocolate. Our DD who had extremely low IgG 1s... she also had no digestive enzymes. Also consider checking for KPU. Unfortunately, its all important when it comes to treating Lyme et al.

 

Good Luck

 

-Wendy

Edited November 28, 2011 by SF Mom

[SSS]

Isn't CVID where you do the immune panel tests, and if your IgG, IgE, etc.

is indeed low, then the insurance companies will pay for IVIG, because this is the treatment?

I think if you do have this issue, than the immune panel tests are run periodically

(4-6 weeks after IVIG leaves the body)

 

Anyway, we do have Lyme and company, with positive tests, and not from wrong bands reporting, but in my case a blood PCR test, and positive antibodies.

 

Dd's first IVIG was like a large herx afterwards- no improvement-

so we did a 2nd high dose IVIG 6 weeks after the first-

(and there were no immune deficient markers on the immune panel, so had to pay cash for both)

 

The 2nd one was totally different than the first- beautiful relief right away- dd was happy and content-a wow!

then it started to fade, all gone back to square one when it left her body completely at the end of 4-6 weeks.

 

Our current Dr. thought the 2nd one might have provided relief from her viral issues.

We pulled tests for viral, we have those- now take a pill a day to tamper it down-

We also found detoxification issues (HLA test) and MTHR issue-

all this can factor into not getting well, *sigh*

[cobbiemommy]

Ds, had full viral panel done a year ago and it lit up like a Christmas tree. HHV6, Coxsackie B, Ebstein Barr, Parvovirus Ab B19 all showed on the IGG panel. Also, he still has a sinus issue, but we can't get into the ENT until February. Usually when he lies down to go to sleep, he keeps trying to clear his nose. It sounds disgusting, but it also never produces anything. Husband thinks it is a tic to keep himself awake, I think he has a blockage.

 

We do not start treating for the Babs until December when we go back to LLMD.

 

Thanks,

Cobbie

[sf_mom]

Hopefully you'll make some great gains treating for Babesia. We did.... especially for younger DD. Livedo rash and mood liability already greatly improved and she has only been treated for Babesia 3 weeks.

 

Are you still treating for viruses? What is or was he taking for viruses? We've basically kept our kids on some type of herbal anti-viral protocol the entire time treating for Pandas/Lyme. They are just now showing that viruses are no longer a predominate issue.... almost 2 years.

 

-Wendy

[sf_mom]

Opps, also wanted add that congestion can also be symptom of babesia or chronic fungal infection. Good luck, I'll be curious to see if you get marked improvement once you treat for Babesia.

 

Here is some information on fungal infections:

 

Symptom Review for Chronic Fungal Infections.

Differential Diagnosis: Signs and symptoms of mycosis can be local and/or systemic. They often simultaneously affect multiple organ systems and defy conventional diagnosis and lab test. Treatment protocols are often ineffective.

 

Superficial symptoms:

 

Chronic sinusitis, stuffy nose, otitis media and external, sore throat, cough, asthma, SOB, esophogitis, nausea, belching, abdominal bloating, gas, IBS, anal itching, vaginosis, vaginitis, cystitis, frequent and urgent urination, skin lesions, irritations and itching, opacity of the nails.

 

Systemic symptoms:

 

Chronic fatigue is common. Significant depression with sleep disturbance, anxiety states and mood swings. Mycotoxin related neuropathy with bilateral numbness and tingling, which does not follow dermatome nerve distribution. Behavioral disorders, difficulty learning, autism, memory and concentration dysfunction, headaches, must be considered related to these pathogens.

 

Considering Fungal the dominant pathogen.

 

Think mold when a patient has inflammation of the mucous membrane and neurological symptoms.

The patient’s mucous membrane symptoms often involve the sinuses, sore throat, asthma, allergies, IBS with gas and bloating, vaginitis, urgency to urinate.

These areas are itchy and irritated.

These inflamed areas are worse in the winter or during the wet season.

Symptoms are worse with mold exposure.

When the mood is dark and depressed.

Can have disruptive effects on behavior, attention, and learning.

Pain is usually mild and bilateral.

 

http://wayneanderson.com/pages/diseases/afng

[cobbiemommy]

Opps, also wanted add that congestion can also be symptom of babesia or chronic fungal infection. Good luck, I'll be curious to see if you get marked improvement once you treat for Babesia.

 

Here is some information on fungal infections:

 

Symptom Review for Chronic Fungal Infections.

Differential Diagnosis: Signs and symptoms of mycosis can be local and/or systemic. They often simultaneously affect multiple organ systems and defy conventional diagnosis and lab test. Treatment protocols are often ineffective.

 

Superficial symptoms:

 

Chronic sinusitis, stuffy nose, otitis media and external, sore throat, cough, asthma, SOB, esophogitis, nausea, belching, abdominal bloating, gas, IBS, anal itching, vaginosis, vaginitis, cystitis, frequent and urgent urination, skin lesions, irritations and itching, opacity of the nails.

 

Systemic symptoms:

 

Chronic fatigue is common. Significant depression with sleep disturbance, anxiety states and mood swings. Mycotoxin related neuropathy with bilateral numbness and tingling, which does not follow dermatome nerve distribution. Behavioral disorders, difficulty learning, autism, memory and concentration dysfunction, headaches, must be considered related to these pathogens.

 

Considering Fungal the dominant pathogen.

 

Think mold when a patient has inflammation of the mucous membrane and neurological symptoms.

The patient’s mucous membrane symptoms often involve the sinuses, sore throat, asthma, allergies, IBS with gas and bloating, vaginitis, urgency to urinate.

These areas are itchy and irritated.

These inflamed areas are worse in the winter or during the wet season.

Symptoms are worse with mold exposure.

When the mood is dark and depressed.

Can have disruptive effects on behavior, attention, and learning.

Pain is usually mild and bilateral.

 

http://wayneanderson.com/pages/diseases/afng

So if a fungal infection in the sinuses were the issue, how is it diagnosed? What is the treatment? I remember that someone's child had a fungal ball in the ethmoid sinus that required surgery, but what are the other options? Do I need to ask his ENT for a CT scan of the sinuses? The ENT and LLMD are friends and collaborate on many cases, so I know they'll be receptive to whatever I ask for.

Edited November 29, 2011 by cobbiemommy

[sf_mom]

You can do a comprehensive stool analysis which will tell you yeast/fungus.... They are unfortunately in the same category. Our younger son had obvious sign 'black tongue' so it was a no brainer to treat. We used Nystatin and Colloidal Silver spray in mouth. If its a systemic infection you may or may not be able to pick it up in the stool. However, one of our Dr. does ART testing and often finds fungus with chronic infection and specifically those with asthma symptoms. There are a couple of herbal protocol's you could try as a treatment trail SP722 'Thorne' or A-Fng 'Byron White'.

 

One other thing to check... nasal swab for MACRONS "staph". Your ENT could probably do swab. Our LLMD also has test kit available and you swab yourself.

 

-Wendy

Edited November 29, 2011 by SF Mom

[bulldog24]

What about thyroid?

[cobbiemommy]

Thyroid is fine, nasal swab came back ok, but I think they were checking for strep in sinuses. Stool samples also came back fine.

 

DS, has literally had this nasal problem for years! When he was a toddler even. At that time, they took x-ray, but no CT scan. He is 12, I can't flipping believe this is still an issues. VENT!!

 

I guess I am just going to have to jump up and down in the doctor's office until they take us seriously. This ENT is very good, so hopefully he will go more in depth.

 

Son is allergic to mold, as am I, so I know this is relevant for him. We had mold in a wall, had it remediated, fixed the roofline, bought a dehumidifier, and our house tested fine via ERMI. Due to a horrible thunderstorm/small tornado we are getting a new HVAC unit next month. Getting my ducts cleaned at the same time.

 

We are farmers and I know one year that some of the corn had Aspergillus. We use respirators in the bin, but not in the combine.

 

My brain is about to explode with all of the variables! Who can control all of them?!?! I just want my son back! I would also like to have a little cash left to help send him and his sister to college.

[sf_mom]

Vent away... I get your frustration and its a long road to recovery!!!!!!!

 

My girlfriend who also has Lyme et al.... grew up on a dairy farm. When they tested her for heavy metals she had some interesting things appear that she now believes were due to her exposure to the fertilizer on the farm i.e. high arsenic levels. As you know, his immune system is tapped and his ability to eradicate any of the infections and toxins he is exposed to is difficult at this point in time. There have been some great post lately on methylation, KPU that you might explore. A very rigorous detox program should be in place that last well beyond treatment for him (I know you are probably already doing detox part). These issues are not over night fixes but I think giving his body the additional fighting power would help. As you know, corn is loaded with mycotoxins, fungus, molds (when stored).

 

I would continue to pursue the chronic infection aspect all while exploring some of the above mentioned. The ENT visit could be very valuable and would definitely re-swab for Staph. I also don't want to put too much emphasis on babesia treatment but I am very hopeful treating this particular infection will provide advances to bring him to the next level of recovery... Its a battle hang in there.

 

-Wendy

[Bill]

We are on our 15th month of treating Lyme and Friends and my gut says that we are missing something big in this picture. Before anyone replies about mold, we know that is not our issue. But there is definitely something we are missing.

 

Cobbie

 

Understand the sentiment. Last visit with Dr. J. I asked the "How long?" question myself. He typically sees 1-3 years for recovery. Just completed 14 months with a long way to go symptom wise...

 

Bill