Can You Please Explain My Results

[Hip]

Thank you for telling me this. I will definitely be bringing this up with my doctor at my next appointment (July 2nd).

It might be an idea to print out and give your doctor a few studies and articles about parvovirus B19-induced ME/CFS and its treatment with IVIG. The following might be useful:

IVIG (Immunoglobulins)

Successful Intravenous Immunoglobulin Therapy in 3 Cases of Parvovirus B19–Associated Chronic Fatigue Syndrome

Chronic fatigue syndrome and arthralgia following parvovirus B19 infection

Persistent parvovirus-associated chronic fatigue treated with high dose intravenous immunoglobulin



In terms of testing and treating the various associations and causes of ME/CFS, the following document may be helpful:
Roadmap of chronic fatigue syndrome (ME/CFS) viral tests and treatments

 

[vergarm]

Hi jlynx,

I think the strong antibiotics messed up my gut so I'm trying to restore the healthy flora by taking probiotics, super digestive enzymes and eliminating alcohol, caffeine and spicy foods that will make my gastritis worse. Sorry to hear you're still feeling the fatigue. This is just me but if you've been seeking treatment with Dr. G for six months and not seeing a lot of improvement I would suggest look elsewhere. He's a good doctor and really cares but maybe a different set of eyes would benefit you.

 

[jlynx]

@vergarm ,

I was able to move my appointment up to June 23rd, next Tuesday. I will see what he says but I should really be treating the Parvo too, it's probably why I'm not making any improvements. Not sure if he's unaware of what was mentioned above or what his reasons are. I know they do IV treatments there so I should be able to get treated there. There's no reason to delay my recovery by waiting and I'm getting pretty frustrated. It will be 6 months in August.

 

[ErdemX]

@vergarm

May I ask you which antibiotics you used and at what dose? Thank you and hope you get better soon..

 

[vergarm]

@ErdemX,

I took ceftin 2x a day and Flagyl once a day (on 1 week, off next week) for my Lyme treatment. I only took it for a couple of months as these antibiotics are pretty strong. I think this may have caused my gut imbalance.

Hope this helps.

 

[vergarm]

@jlynx,

Good luck with your appt tomorrow and hope you get the complete treatment. Please keep me posted. I know were seeing different doctors now that I quit my treatment with Dr. G but would still be good to exchange notes.

 

[jlynx]

@vergarm ,

Good news. He approved of the IVIG treatments and I begin on Monday and go twice a week at first and then go less often. He didn't mention it before because it is very expensive. I am hoping that my insurance covers most of it. He gave me Vitamin C powder to take (to detox and help fight the viruses), and some samples of Nuvigil, a stimulant.

My thyroid and Vitamin D levels are good now, but I will have to take the thyroid medicine for the rest of my life. My B12 is too low so I'm taking that now. I am excited for the IVIG since it's most likely needed for me to get better. I do wish I could've started it sooner though. I will be reading up on people's personal experiences with it.

How are you doing?

 

[vergarm]

@jlynx,

That's good news! I'm glad that you will be starting your treatment. I'm feeling better, still trying to avoid food triggers no spicy, no caffeine (this was hard), no alcohol until my gut totally recovers. Sometimes I eat and I feel a burn similar to heartburn but flows thru my back. I try to make a note of what I ate whenever I feel something like that so I can avoid it for now. I try to stay active, exercise 3x a week, adapting a lean diet.

Good luck with your treatment and please keep me posted.

 

[jlynx]

@vergarm ,

Never mind with starting treatment Monday... Unfortunately my insurance won't cover it there since he's out of network. It is way too expensive without insurance. ($700 per treatment, and for a low dose ) So I found a local hematologist who does IVIG (and takes insurance) and set up an appointment for next Wednesday. Hopefully it's no issue getting it there and I can start as soon as possible, and it's mostly covered. She said I might have to get more lab work since i was last tested for the infections in January. Hopefully not. It sucks that I have to wait longer now.

I do notice a subtle difference from taking the Nuvigil. I feel a little less dead, and more alert. However, it created the worst insomnia last night. I took it a bit earlier today so hopefully that helps. Unless it helps me a lot I think I'd just like to take it temporarily for a little boost until I start treatment.

I'm glad you are feeling better. Hopefully when your gut is healed you no longer have to be so careful with your diet.

 

[vergarm]

@jlynx

Yeah, $700 per treatment is a lot of money. Good thing you found someone local that does IVIG. I know Nuvigil is mostly for people with sleep apnea and work shifts disorders. I think you mentioned before that you're not getting a good
deep sleep, maybe this is why you find Nuvigil helps you.

I'm taking Luna (melatonin and HTTP) sleep aid. I don't have any problems with sleeping but I think it gives me that deep relaxing sleep.

 

[jlynx]

@jlynx

Yeah, $700 per treatment is a lot of money. Good thing you found someone local that does IVIG. I know Nuvigil is mostly for people with sleep apnea and work shifts disorders. I think you mentioned before that you're not getting a good
deep sleep, maybe this is why you find Nuvigil helps you.

I'm taking Luna (melatonin and HTTP) sleep aid. I don't have any problems with sleeping but I think it gives me that deep relaxing sleep.

I stopped taking the Nuvigil as it was making me feel very out of it and spacy, which I didn't like it at all. Well, I can't get the treatment at the hematologist- they said 'my reason doesn't fall under hematology'. I've made an appointment with a rheumatologist for July 28. They do IVIG there so I am hoping they will give it to me. I am looking for other options in the meantime if it doesn't work out there. Also looking for LLMD's but I may just end up treating myself with herbals to save money/time, since it's possible I do have Lyme.

 

[vergarm]

@jlynx

Sorry to hear that Nuvigil didnt work for you. Hopefully you'll find someone that will do the IVIG. Are you still going to continue your appts with Dr G? Also, did you have the Lyme test done at Quest when Dr G requested for it? Mine was from Igenex Labs.
Dr. Wittels is an LLMD and she takes insurance if you're interested in seeing her.

 

[jlynx]

@vergarm

Good news. There is an immunologist, Dr. Chegini, in Exton that prescribes IVIG. My appt. is next Thursday, hopefully it goes well and I can start soon. And he takes insurance.

Dr. G went by my results from the Western Blot a previous doc tested me for not too long ago. But I looked at my lab work again and he also tested me for CD 57 which is a more accurate Lyme test, and it was negative. I got it through LabCorp. So I don't believe I have it after all. That's a lot less to worry about.

I think I will keep seeing Dr. G as he is treating the one infection with Valcyte. But I think I will push back my appointment because it is a waste of money to go when I haven't had any changes.

How are you doing?

 

[vergarm]

@jlynx,

thats great news. I hope you can get the IVIG treatment there. Well, eversince my lyme came back last year I think my health anxiety has gotten worse. My wife is tuning me out whenever I talk about my symptoms lol. For the past few days I've been having this lower back pain, I'm so worried that it could be some kind of cancer even though theres so many things that could be cause of back pain. I was given zoloft (last year) its an anti-depressant. I weaned off of it coz I didnt think that I would need it but I guess I would be asking my doctor again just to calm things down.

Good luck with your appointment and keep me posted.

 

[jlynx]

@vergarm ,

I can definitely relate to the health and general anxiety, it's bad sometimes. Just try to think that the likelihood of it being something serious is very, very slim. Or just feeling bad about my general situation, I worry about the impact on my longevity and health in the future because of what I'm going through now. I've read things that have said that people's longevity is lower and there is a higher risk of cancer later on. You just have to try to think positive though.

 

[jlynx]

@vergarm,

My appointment went terribly. Looks like I have to go to Philly to try someone else now. This will be doctor #5. Awesome.

 

[vergarm]

hi jlynx,

Sorry to hear that, its probably tough to find someone who can do an IVIG treatment in this area. Wish I could help you. Maybe there's another option other than IVIG?

 

[jlynx]

Hey @vergarm

I appreciate that. The appt with that immunologist was awful- he had no idea what he was talking about and completely talked down to me. I'm giving up on the IVIG for now since it's so expensive and I don't want to deal with another clueless doctor.

There was an alternative mentioned on this site called Equilibrant, which I've started taking. It's natural and was created by Dr. Chia, one of the top CFS doctors. Hopefully it helps.

Hope you are well.

 

[vergarm]

Hey @jylnx,

I'm doing much better. I hope Equilibriant works for you. It looks like there are some people who posted that it helped them.

 

[Clerner]

Good news. He approved of the IVIG treatments and I begin on Monday and go twice a week at first and then go less often.

Can I ask how the IVIG worked for you? What were your parvovirus Igg numbers prior to IVIG? Thanks!