Can You Please Explain My Results

[vergarm]

hi xrunner - Good info on Lyme, it is always tricky especially with co-infections.


jlynx - Just checking how you're doing with T3. I called pharmacy and they're sending mine too in about 5 days. I was trying to find a way to pm you but I don't see that option here. That way we can close this thread.

 

[nandixon]

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!

If I understand correctly, that's interesting that Dr Garabedian had you restart vitamin D with your calcitriol at 165 (pg/mL).

What dose did he give you? I assume lower than the 4000iu you were originally taking.(?)

If you wouldn't mind, too, what was your "regular" (25-hydroxy) vitamin D result at the time of the high calcitriol result?

Also, what was your calcium level(s)?

(My calcitriol set point is apparently naturally high, so that I'm at 75 pg/mL taking approx 600iu of vitamin D3 per day, and at 82 pg/mL taking approx 2400iu per day, with 25-hydroxy at 31 and 45 ng/mL, respectively. The larger dose makes my fatigue much worse. Calcium is mid-range at either dose.)

Thanks and good luck!

 

[vergarm]

hey jylnx, haven't heard from you for few days. How's your treatment going? Hope all is well.

 

[jlynx]

Hey sorry, for some reason I stopped getting email updates.

So far not really any changes unfortunately. Well I had one 'moment' the other day where I was walking up the stairs and actually had strength in my legs. I hate stairs since they take so much effort. But I actually jogged up them with a spring in my step! I was like 'wait, what just happened?'! lol. Except for that time it's been the same old same old... But hey I'll take it as a good sign. Maybe I'll start having more and more of those moments.

Some days I get really tired earlier in the day and I want to go to bed at like 8 pm. And still getting frequent muscle twitching. Something appearance-wise I feel has improved is my eyes (most likely from the thyroid medicine). I feel like they are less swollen and puffy than they usually are.

How's it going with you @vergarm ?

 

[jlynx]

If I understand correctly, that's interesting that Dr Garabedian had you restart vitamin D with your calcitriol at 165 (pg/mL).

What dose did he give you? I assume lower than the 4000iu you were originally taking.(?)

If you wouldn't mind, too, what was your "regular" (25-hydroxy) vitamin D result at the time of the high calcitriol result?

Also, what was your calcium level(s)?

(My calcitriol set point is apparently naturally high, so that I'm at 75 pg/mL taking approx 600iu of vitamin D3 per day, and at 82 pg/mL taking approx 2400iu per day, with 25-hydroxy at 31 and 45 ng/mL, respectively. The larger dose makes my fatigue much worse. Calcium is mid-range at either dose.)

Thanks and good luck!

He has me on one 50,000 iu pill a week. He actually said my Calcitrol level was fine, but my 25-Hydroxy level (42.1) is too low.

It seems that my calcium wasn't tested so unfortunately I can't tell you that. That's interesting that too high of a dose makes your fatigue worse. I hope I am on the correct dose.

 

[jlynx]

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.

Thanks for pointing this out. My doc said the Lyme is not active right now but I did not receive the thorough testing that you've mentioned. Perhaps if symptoms do not resolve (hopefully they do) after a considerable amount of time on Valcyte I could try antibiotics. I hate this illness and how complicated it is.

 

[vergarm]

Hey sorry, for some reason I stopped getting email updates.

So far not really any changes unfortunately. Well I had one 'moment' the other day where I was walking up the stairs and actually had strength in my legs. I hate stairs since they take so much effort. But I actually jogged up them with a spring in my step! I was like 'wait, what just happened?'! lol. Except for that time it's been the same old same old... But hey I'll take it as a good sign. Maybe I'll start having more and more of those moments.

Some days I get really tired earlier in the day and I want to go to bed at like 8 pm. And still getting frequent muscle twitching. Something appearance-wise I feel has improved is my eyes (most likely from the thyroid medicine). I feel like they are less swollen and puffy than they usually are.

How's it going with you @vergarm ?

Hi jylnx, glad you're doing well I'm doin fine. I'm taking all the supplements now. The burning skin sensation is gone now. I will feel like a cold water sensation thru my muscles but it's barely there. I do have the muscle twitching too (in my neck last night which was weird). I think the only weird symptom right now that I have is the fluttery feeling in my throat and sometimes my throat feels sore but not like the one you get from colds. It never gets worse though.

I have my T3 supplement but I havent taken it to be honest, I guess I'm chickening out. I heard that when you start taking T3 that they have to check your thyroid regularly to make sure you don't go hyperthyroid or hypothyroid. I just have a low T3 probably similar to yours. I guess I should talk to Dr G. to address my concerns. I feel like I know all the lyme related medications but the thyroid supplement is just something new to me.

 

[jlynx]

Hey, I wouldn't worry about taking the T3. If you're like me and on a pretty low dose then I think it would take a while for things to go out of whack, if they would. And I haven't had any negative effects from it so far. I was a lot more worried about taking the Valcyte since its a very harsh drug. Don't forget to take it on an empty stomach.

Best wishes!

 

[vergarm]

Hi jlynx, thanks for the encouragement. I really appreciate it

 

[jlynx]

I am really working on trying to improve my sleep quality. I am going to wait on getting a sleep study done to see if it gets better. I bought a pillow top for my mattress and a 'Happy Light' for SAD, which I definitely believe I have. (http://www.amazon.com/Verilux-VT01W...F8&qid=1424456993&sr=1-1&keywords=happy+light) .

"Improve your mood, energy and concentration naturally with the Happy Light 2500 Energy Lamp from Verilux. As many as 1 in 7 American suffer from Winter Blues, which is a lesser form of Seasonal Affective Disorder caused by a lack of exposure to natural sunlight. Winter Blues can affect mood, energy, sleep, appetite and more. Fortunately, light therapy has been found to be an effective, chemical-free approach to addressing the symptoms of Winter Blues. And the Verilux HappyLight 2500 Energy Lamp provides the most studied and proven form of light therapy. The HappyLight’s balanced Natural Spectrum Daylight gently helps the body recalibrate and stabilize, reducing fatigue and lethargy, improving focus, concentration and productivity. With 2500 lux of NaturalSpectrum daylight, the HappyLight 2500 can also help address jet lag and difficulties sleeping and waking due to shift work. Even in southern climates, the HappyLight 2500 prompts the body’s natural sleep patterns without artificial stimulants or drugs."

It wasn't too expensive and got good reviews so it's worth a try! I also bought Valerian Root to try. Melatonin and 5 HTP don't seem to really make a difference, although I do believe they help me get to sleep faster. I think improving sleep quality would really help with my overall well-being so hopefully I have some success with something I try.

 

[vergarm]

Hey jlynx,

That HappyLight looks promising. Yes, winter can really affect your mood. It doesn't help especially if you are sick with all these symptoms. I actually bought memory foam pillow to help me with sleep 2 months ago when all my symptoms were really bad November last year. I had to change sleep position at night because my ribs/hips would ache and would wake up every 2-3 hrs at night. I would wake up in the morning fatigued and muscles stiff.

I also bought Luna (natural sleep aid from Amazon ). Luna also has valerian root.
I never got the chance to try it as my sleep condition improved since last month. I think my body
is starting to fight the Lyme infection. You're right about pursuing your sleep issues, it would help your body heal quicker.
Let me know how it goes with that HappyLight.

 

[jlynx]

Hey @vergarm,

I'm glad to hear your sleep has improved, that's great news. It's too soon to say whether the light is helping me, but I think I've slept a little better the past two nights from the Valerian. Haven't woken up refreshed, but it felt possibly deeper and more restful. My head felt clearer yesterday and I felt more alert and was in a good mood. I had a really bad headache this morning but it went away after a while without taking anything.

 

[vergarm]

hey jlynx,

how are you? nothing new on my side. When is your follow-up with Dr. G? Mine is March 19. I'll probably stay on
the next round of antibiotics that he will prescribe but after that I'd like to maintain the herbal supplements that I'm taking
for Lyme. I don't want to stay on antibiotics for a long time, I do think it's helpful though.

 

[jlynx]

Hey,

I'm ok, nothing new here either... It's frustrating. Do you notice any differences from the thyroid medicine, if you're taking it? My follow-up is on March 26, hopefully he can give me some words of encouragement. I'd like to ask him what the results have been with any of his other patients on Valcyte. There's not a lot of information on it online. I know everyone is different and it could take a while but I wish there was a timeline when I could expect to be feeling better.

 

[vergarm]

hi jlynx,

Sorry to hear that you're still not feeling well. what are your lingering symptoms? I've been undergoing treatment with herbs and antibiotics for 4 weeks so I guess it's too early for us to tell if its really working. I also can't tell because before
I started treatment all my symptoms like brain fog, muscle fatigue, burning skin disappeared. So for me It's tough to gauge whether it is working or not. I can relate with how you're feeling I too sometimes think about the effectivity of the meds I'm taking.

I've done my research regarding the Lyme protocol that I'm taking and I know some people took the treatment between 4-6 months or longer depending on severity of your symptoms. We just have to be patient I guess. I didn't take the thyroid supplement, I feel that I have questions/concerns which I will ask him in my follow up before starting it.

 

[jlynx]

That's interesting that your symptoms disappeared. I would definitely keep taking the antibiotics for as long as he says to make sure the Lyme is completely put into remission, so they don't come back.

The worst symptom is the fatigue and feeling horrible after very mild exercise. It makes what I can do in life very limited. :/ Cognitive function is not normal either. This has not changed at all since starting treatment. I just need to not worry about it and be patient. I've had the negative mindset of being so tired of being sick that I just want to feel better right away, but I need to accept that that's not the way it's going to happen. Nobody that I've seen online who took Valcyte for HHV-6 caused CFS got better right away. Unfortunately, it's not going to be days, or even weeks, it's going to be at least a few months before I get relief. I'm doing exactly what I need to do so I just need to wait it out. I've been sick for years, so what's a couple more months? I'm grateful I'm not worse, and I have a good doctor helping me.

I will get better. In time. Negative thinking doesn't do anyone any good. I will definitely come out of this as a more patient person lol.

 

[vergarm]

There's one product from Amazon that I bought when my fatigue was bad last year. It's called "fatigue to fantastic".
It's a multivitamin supplement. It did help me when I was really feeling weak. You can check out the reviews and see if this is something that you're willing to try.
http://www.amazon.com/Fatigued-Fant...System/dp/B0017K8VTE/ref=cm_cr_pr_product_top

Hope this helps.

 

[jlynx]

Well I know the Valcyte has definitely kicked in because my lymph nodes are super swollen. They feel like they're about to pop out of my neck. Things are starting to happen so hopefully I will start seeing changes soon. I'm also having some foot and ankle pain, which is weird since I'm taking it very easy. I would have bad foot pain when I was working at my previous job (especially after I woke up), since it involved a lot of walking. The muscle twitching has lessened a lot which is nice; there were a couple days where it was constant all day and quite annoying.

I've tried so many supplements for energy and haven't noticed a difference from any. Dr. G told me to take D-Ribose but it's pretty expensive for the amount you need to take... I don't think I'll have any energy until the levels of the virus are lower, since all of my resources are going to fighting that right now.

 

[vergarm]

its good that the Valcyte is kicking in. I think you're right, we have to treat the virus first in order to get better. I saw D-Ribose too but I heard it can be bad if you easily get kidney stones which i do lol.

 

[jlynx]

I've definitely been worse the past week maybe... Even little things I could handle before feel like too much now. Physically I am crashing sooner and only want to lie down... So it's definitely working but it sucks really bad. My skin is breaking out too, I don't know if it is a side effect of the drug, or the virus detoxing through the skin. ? Ugh.

I have a lot of questions for Dr. G at my next appointment. I didn't know that about D-Ribose, I feel less bad about not taking it now.

I ordered activated charcoal to hopefully speed up the detox process. It can help with the endotoxin reactions associated with herxing. http://www.amazon.com/Natures-Way-A...1425841669&sr=8-1&keywords=activated+charcoal

Hopefully I turn the corner soon! There's warm weather finally coming though so that's enough to cheer anyone up. Thanks for keeping in touch!