Can You Please Explain My Results

[jlynx]

Hello,

I am very thankful that the third doctor I've visited is wonderful and very knowledgable on CFS. It is Dr. Garabedian of the Holtorf Medical Group, located in King of Prussia, PA. I received my lab results and would like some advice and an explanation on what they mean, before my next appointment on February 5th. And also what type of treatment I can expect. I really appreciate it!

High for Hhv 6 Igg Antibodies - 13.99
High for Parvovirus B19, Igg - 5.7 (Range: 0.0-0.8)
High for Calcitriol(1,25 Di-Oh Vit D) - 165.3 (Range: 10.0-75.0)
High for Iron, Serum - 167 (Range: 35-155)


I do not understand the high vitamin D and iron levels. I do not supplement with iron and I do not take a large amount of Vitamin D (4,000 IU/ day). I've stopped taking it now.

My symptoms are: terrible PEM after any mild exercise, no energy, depression, mood swings/ irritability, brain fog/ slow thinking, poor memory, hair loss/ dryness, dry skin, mild acne, non-refreshing sleep, cold hands and feet, joint pain, and constant swollen lymph nodes in neck. I am a 22 year old female. Also, I did have Lyme Disease when I was five years old. It started around 2010.

 

[Sushi]

I do not understand the high vitamin D and iron levels. I do not supplement with iron and I do not take a large amount of Vitamin D (4,000 IU/ day). I've stopped taking it now.

The high D 1,25 is common in this patient group. It is possible to have low D 25 and high D 1,25. Since the high D 1,25 can be associated with a rise in calcium, it is good to watch it. I used to have high D 1,25 but, for me, it normalized with GcMAF.

Best wishes,
Sushi

 

[deleder2k]

http://www.ncbi.nlm.nih.gov/pubmed/12715326

 

[taniaaust1]

I do not take a large amount of Vitamin D (4,000 IU/ day). I've stopped taking it now.

where I am that would be said to be a high dose if taking every day. In Australia 2,000IU is the standard dose of a vitamin D supplement.

Fat soluable vitamins (which D is) can be dangerous if they get too high as the body cant easily clear them.

High iron could mean you may a mutation in the HFE gene. That can cause hemochromatosis which can cause iron overload symptoms and can lead to organ damage esp in males. Females cause we menstrate, if we have these disorders we are at less risk of organ damage due to high iron.

Males with this disorder thou may have to donate blood to keep their iron from going up too high, they may suddenly find out they have this disorder when an organ fails.

I have on gene of this of a type which isnt cause of concern (Im Heterozygous for H63D so are just a carrier for hemochromatosis.. its the C282Y gene which is the very bad one)

21andME used to tell people on the health reports if they had inherited this mutation... if you've had 23andME testing done even thou they dont give the health reports nowdays, you may be able to still look up to see if you have these gene mutations in the raw data results.

You may want to request a genetic test to see if you have this mutation esp if you have sons who may of inherited so then could be at risk of issues.

Be aware that ME may of dropped your iron levels to what they otherwise could of been and they may of been even higher if you didnt have ME. My ME/CFS specialist says that low ferritin levels he very commonly finds in his ME patients even if they are having to lot of iron in their diets (this was the cause with me, I still had low ferritin and I was eatting meat 3times daily and have that gene mutation).

So the fact you are showing high iron with no reason why even with having ME, could be seen as a bit worrisome being a stronger possibility that you could really have something going wrong with that iron.

http://haemochromatosis.org.au/diagnosis/
treatment if you have haemochromatosis http://haemochromatosis.org.au/treatment/

 

[vergarm]

Hi jlynx,

I'm in the same boat as you. I'm seeing Dr. Garabedian on Feb 5th. I got lyme back in 2004 and never had any relapse. I've been healthy and athletic person until Nov 2014 started feeling neuro symptoms. Been to bunch of doctors (MRI brain/spine), EMG and blood test all normal. We're looking at it as lyme but at this point I'm still waiting for my lyme test results. Good luck with your treatment.

 

[jlynx]

Hi jlynx,

I'm in the same boat as you. I'm seeing Dr. Garabedian on Feb 5th. I got lyme back in 2004 and never had any relapse. I've been healthy and athletic person until Nov 2014 started feeling neuro symptoms. Been to bunch of doctors (MRI brain/spine), EMG and blood test all normal. We're looking at it as lyme but at this point I'm still waiting for my lyme test results. Good luck with your treatment.

Wow, small world! Good luck to you too, I hope you can get some answers soon.

Thanks everyone for the responses.

 

[jlynx]

where I am that would be said to be a high dose if taking every day. In Australia 2,000IU is the standard dose of a vitamin D supplement.

Fat soluable vitamins (which D is) can be dangerous if they get too high as the body cant easily clear them.

It is the middle of winter here and I am getting zero sun that is why I was supplementing with a higher amount. My doctor didn't have anything against it, but I did stop taking it to be safer.

 

[vergarm]

hi jlynx,

Just wanted to check how did your appointment go with Dr. Garabedian. Mine went well. I was there around 4:30pm today. My lyme came back positive so he prescribed me with antibiotics and bunch of herbal treatments. Hope you got your treatments.

 

[jlynx]

hi jlynx,

Just wanted to check how did your appointment go with Dr. Garabedian. Mine went well. I was there around 4:30pm today. My lyme came back positive so he prescribed me with antibiotics and bunch of herbal treatments. Hope you got your treatments.

Hi,

My Lyme is actually negative right now. I have one of the highest numbers for HHV 6 that he's seen. And high for Parvovirus. I also have Thyroid hormone resistance. He prescribed Valcyte and T3, and he gave me Vitamin D and four different immune support supplements. I also have to get a sleep study done before my next appointment as my quality of sleep is poor.

CVS did not have Valcyte in stock so I'll be starting that tomorrow and should receive the T3 within a week... It's great to be finally starting treatment.

Hope you feel better soon!

 

[vergarm]

Hi jlynx.

Good to hear that you don't have Lyme. I will pickup my antibiotics from CVS tomorrow.
I'm definitely determined to put this Lyme into dormancy. Dr. G also prescribed T3, I found out I have thyroid conversion issue. He also gave me Immunostim and 3 other herbal medicines to help my body with fight against Lyme. I probably have sleep issues too because I would wake up not feeling fresh. He never requested for a sleep study I guess since that's not one of my main issues.

Cheers

 

[jlynx]

Hey,

I received Immunostim too, as well as NT Factor, Transfer Factor Plasmyc, and Antiox Max. They're probably similar to yours.

I do not really want to get a sleep study done and I am not sure if it is completely necessary. Unrefreshing sleep is a common characteristic of CFS and it seems that as we treat the cause, sleep quality should improve. I also am going to improve my sleep habits and go to bed earlier to see if that helps. I may get a study done further down the road if I am still having issues, but I don't have any of the common traits for sleep apnea, so I don't think it is that..

"Unrefreshing sleep is believed to be a problem with how your body regulates sleep, which is called sleep homeostasis. While people with ME/CFS may have sleep disorders on top of unrefreshing sleep, multiple studies support the theory that their constant fatigue stems from impaired sleep homeostasis and not from other sleep disorders.

A growing body of research supports the hypothesis of autonomic dysfunction in ME/CFS. The autonomic nervous system comprises the sympathetic and parasympathetic nervous systems, which work in balance with each other. When the sympathetic nervous system is activated, it puts you into fight-or-flight mode. Conversely, parasympathetic activation is referred to as rest-and-digest mode.

If the sympathetic and parasympathetic are out of balance due to autonomic dysfunction, it could put you in a state of heightened arousal and awareness when you're trying to sleep. It's a lot like how a new parent is always on alert for a crying baby, never really getting into a good, deep sleep."

Via: http://chronicfatigue.about.com/od/...reshing-Sleep-In-Chronic-Fatigue-Syndrome.htm

Dr. G mentioned using Xyrem as a way to reach deep sleep every night, but he prefers not prescribing it as it can be dangerous. (It REALLY knocks you out.)

 

[vergarm]

i agree with you jlynx i think once you treat these viruses and strengthen your immune system then it will definitely help you sleep better. Dr G also mentioned my EBV activated because Lyme lowered my immune system. I changed my sleep schedule too, I was sleeping less than 6 hrs every night and I think that put a toll on my body. I heard from a lot of people that Lauricidin helps in fighting viruses, just saw it from Amazon.com. I might try it in future probably after I've taken all the supplements from Dr. G. I was told to take it slow due to herx reactions when the Lyme toxins die off.

I was taking a sleep aid last November when the flare-ups were bad but now I no longer depend on them. Please keep me posted with your supplements. Its nice to exchange info with someone taking similar treatments. This is my first time to seek an integrative medicine doctor.

 

[jlynx]

Thanks for mentioning that supplement, I will make a note of it to maybe take later, it seems interesting. I took my first two Valcyte pills a couple hours ago and surprisingly it already seems to have taken effect? I was doing a little bit of cleaning and suddenly became very tired and I am definitely hitting the sack early tonight. It's crazy that it was that fast. It is not normal for me to crash so hard so quickly. I am going to read about other people's experiences with the drug. I hope the upcoming days/weeks do not get too bad...

Please keep me posted as well.

 

[vergarm]

I read that Valcyte is anti-viral and treats infections like HHV-6, EBV and CMV. It's possible that you could be having herx reactions. Drink plenty of liquids. I was told by Dr. G to drink plenty of water as we get rid of these toxins in our body.

I'm starting my meds tomorrow night (was thinking of starting today) but I'm going to a big event tomorrow and don't want to have a herx while at the party lol.

 

[jlynx]

Good luck with starting your medicine. I had another side effect of muscle soreness, nothing unbearable though, and a little more tired. If this stuff means its working then idc cause it's a good thing. And anything that comes up will be worth it to be healed and feeling better in the end. I'm so impatient though since I've been feeling like crap for soo long.

 

[vergarm]

i just took my first antibiotic today and started to get a headache. I will probably take at least one of the herb supplement. I'm adding the supplements one by one so as not to overwhelm my body with all these medications.
I know what you mean, I'm impatient too.

 

[jlynx]

Hey vergarm just checking to see how you're doing, if you are having any other side effects.

Day 5 on Valcyte. For me the muscle soreness has mostly gone away. I felt like I was getting a sore throat but now it's gone so that's good. I feel a little less tired today than yesterday. I'm having some muscle twitching but other than that nothing new to report. I hope the T3 pills come soon, I read that two people instantly felt better after taking them. That would be amazing.

 

[vergarm]

hi jlynx,

Thanks for asking. Well I broke my word and started taking all the medications last night lol but I made sure I drank lots, I mean lots of water today. I woke up feeling like I'm coming down with something but not bad as I was able to go to work.
Its strange you mentioned the sore throat coz that's what I'm having right now and mine feels weird, like a funny feeling
in my throat but it comes and goes. I had to download a medication app so I can create a pill reminder coz I'm taking lots of them and need to space them out. I also bought probiotics to restore the good bacteria killed by antibiotics.
So far no major herx (fingers crossed) on day 2.

Did someone already gave you a call for your T3 prescription? I'm still waiting for the phone call.

 

[jlynx]

Glad to hear you're not having any other reactions. It is a lot of pills, I think I may have forgotten to take the one yesterday...

The pharmacy called me the day after my appointment and I received the pills yesterday (2/10). It's weird you didn't get a call. I would call them so you can start taking the T3.

 

[xrunner]

My symptoms are: terrible PEM after any mild exercise, no energy, depression, mood swings/ irritability, brain fog/ slow thinking, poor memory, hair loss/ dryness, dry skin, mild acne, non-refreshing sleep, cold hands and feet, joint pain, and constant swollen lymph nodes in neck. I am a 22 year old female. Also, I did have Lyme Disease when I was five years old. It started around 2010.

Hi @jlynx
It's not clear what tests you had to exclude Lyme...
I'd look for a confirmation for Lyme through a wide range of tests WB, PCR, CD57 etc. and co-infections (e.g. bart, bab, mycoplasmas, cpn, ricketsia etc). Lyme can never bi rid of the body only kept in check. Testing is far from infallible and such infections tend to be covert and stealthy.
Considering Vit D metabolism dysregulation + thyroid + immune suppression/viral reactivation I would want to be as certain as possible in excluding a bacterial cause (and if it were me trialling a course of appropriate abx as probe).
Best wishes.