Can You Please Explain My Results

[vergarm]

Hey jlynx,

Good to hear that you're feeling better. I think the antibiotics really helped me too but I don't want to use them long term. The ENT doctor told me my tongue have white thrush from the use of antibiotics. Did you get your bill from the blood work? Mine came back and it wasn't cheap. I guess since its for my health then I can't put a price tag. I'm scheduled to see a holistic doctor for the Lyme next month just to reinforce the herbal treatment.

Enjoy the warm weather.

 

[jlynx]

Hey, how are you doing? Has the thrush gone away? Definitely take some good probiotics to bring back the good bacteria. I did get the bill, thankfully my insurance covers it 100%. It doesn't cover the appointments at all though unfortunately.

Well, I feel like I've taken 100 steps back. I thought I was starting to get better as two weekends ago I went grocery shopping and never crashed, I felt almost normal. I did not become tired until a normal person would get tired (around 9 or 10 pm), and it wasn't the pure exhaustion that I am used to. And the day before that I cleaned a lot and didn't crash either. Normally those are a struggle with my fatigue and weakness. It was wonderful and I was feeling so hopeful. But this past weekend I was much worse again, and my depression flared up again badly. I barely had the strength to stand and needed much more sleep. I'm not sure what happened, but I think 3 mg is too high of a dose for me and that was causing the depression. (You need to tweak the dosage to find what works for you, people's optimal dose varies greatly.) Or maybe it just gave me a little bit of an initial boost? I cut it back to 2 mg and am feeling a bit better although still not sleeping as well. I'm not sure about the LDN if I want to keep taking it or not, it is so tricky figuring out the dosage and it may have made me worse. But there's a lot of inspiring success stories about it helping people. My next appt is May 7th so I will ask Dr. G for his opinion. I have been taking D-Ribose every day and don't really notice a difference from it. It will be 3 months on Valcyte this Friday... I know it is still early though and many people don't feel better until 6 months or later.

 

[vergarm]

Hey jlynx,

Thanks for asking. It looks like the thrush is gone. Yup, I bought probiotics, I took some heavy antibiotics that probably killed the good bacteria.
Well, my Lyme symptoms seem to be in remission right now. The only thing that's bothering me
is silent reflux. The sore throat sometimes bothers me and experiencing some ear pain too. I read that the acid can go up to your throat and even irritate your ear canal. Some mentioned diet change, I've always been eating healthy foods green veggies, no alcohol, less fatty foods and chocolates so this really surprises me. When I visit the holistic doctor
I will ask for natural treatments for silent reflux.

Sorry to hear that you are experiencing depression. Is it a side effect of LDN? I forgot to tell you that in January I was taking Zoloft prescribed by a Neurologist. I was feeling a lot of anxiety/depression with my Lyme symptoms. I eventually weaned off last March and glad that I'm no longer taking it. Please keep me posted with your May 7th appt with Dr. G.
Please don't hesitate to chat

 

[vergarm]

hey jlynx, how did your appointment go? Hope all is well.

 

[jlynx]

Hey,

I'm glad you are in remission and doing well. I hope you find something that works for you to get rid of the reflux. That doesn't sound fun.

My appointment went well. He said it is not abnormal to feel better for a few days and then go back downhill as I did; he said it's a good sign. He decided to raise my T3 to 20 mg instead of 15 so maybe that will help me feel a little better. I got another blood test so I'm curious to see if my levels became more balanced and if I had any other changes. He said my viral levels would not have changed yet.

I have depression I think as a symptom of the CFS. I was on Cymbalta and could not tolerate it at all and I don't want to be on a depression med anyway. I've tried taking natural supps. for it like 5 HTP, but not for that long. I asked him to test my hormones because I know that can affect your mood.

I've been on the LDN for over a month and have had no benefits from it. He said it can take a few months to take affect but I don't really think I want to keep taking it. I'd rather take a holistic approach whenever possible, and it is still a drug. Also my insurance doesn't cover it because it is off-label. I am on a Facebook support page for it and the people on there are a little fanatical about it, and I don't doubt it can really help a lot of people, but I think I will stop taking it. There also have been very few studies done on it, which I don't like.

I am taking natural anti-virals like raw Apple Cider Vinegar and Grapefruit Seed Extract. And there's some more things I want to try like Monolaurin, which is from coconut oil and anti-viral. I didn't get any more supplements from Dr. G this time because they are too expensive. My next appt. is in 8 weeks.

Do you mind me asking which holistic doctor you are now seeing? Hope you are enjoying this nice weather!

 

[vergarm]

Hey Jlynx,

The monolaurin is the one I mentioned to you few months ago for anti-viral.
I actually ordered it from Amazon its called Lauricidin. I totally agree with you and follow your gut on LDN,
don't take it if it's not helping you.

I'm also taking raw apple cider vinegar for the acid reflux, I heard it can help. I'm scheduled to see the holistic doctor on May 22nd. Her name is Dr. Heidi Wittels (https://montwellness.wordpress.com/wittels/).
This will be my first appt so I'm not really sure what to expect.
If you're open to switching to I can let you know after my first visit.
Keep in touch

 

[jlynx]

Hey,

Still waiting to get my test results back. I was worse again this weekend and had a flare up of RLS. I think it may have been a herx reaction.

Please let me know how your appt with the holistic doc goes. I will stick with Dr. G for now, but I may be interested in seeing her later if she is good. Hope it goes well for you.

 

[vergarm]

Hey,

My appt with Dr. Wittels went well. They were moving to a new office location so they were so busy I had to wait for an hour. I didn't expect the number of people coming in for treatment. I guess because she accepts insurance which is great. She gave me some supplements to take for acid reflux and she also wanted me to extend my Lyme treatment with natural herbs. She also wants to check me for gluten sensitivity as I was complaining about bloating lately. So I think overall I'm satisfied with her approach. How are you doing?

 

[vergarm]

Hey,

My appt with Dr. Wittels went well. They just moved to a new office location so things were a little crazy I had to wait for an hour. I didn't expect the number of people coming in for treatment. I guess because she accepts insurance which is great. She gave me some supplements to take for acid reflux and she also wanted me to extend my Lyme treatment with natural herbs. She also wants to check me for gluten sensitivity as I was complaining about bloating lately. So I think overall I'm satisfied with her approach. How are you doing?

 

[msf]

Hi Jlynx,

I have just read this thread, and it wasn't clear to me whether you are seeing/have seen a competent LLMD. As someone else said, it is very difficult to exclude Lyme, which is why it is necessary to find a knowledgeable LLMD so that you can be as sure as possible that you no longer have a Lyme infection. If you can't find a knowledgeable LLMD near you (I'm not sure where you live), then I would suggest you follow Daffodil's advice and arrange to have the Infectolab LTT-ELISPOT test done. This is the most important test in excluding Lyme, although a good LLMD will use other tests too.

I don't know if you are aware of this, but some LLMD's think that herpes virus reactivations are a direct result of Lyme infection, and that the thyroid problems are one of the sequelae of the same.

Finally, if you do look for a LLMD, you should make sure they are ILADS rather than IDSA.

 

[jlynx]

Hi Jlynx,

I have just read this thread, and it wasn't clear to me whether you are seeing/have seen a competent LLMD. As someone else said, it is very difficult to exclude Lyme, which is why it is necessary to find a knowledgeable LLMD so that you can be as sure as possible that you no longer have a Lyme infection. If you can't find a knowledgeable LLMD near you (I'm not sure where you live), then I would suggest you follow Daffodil's advice and arrange to have the Infectolab LTT-ELISPOT test done. This is the most important test in excluding Lyme, although a good LLMD will use other tests too.

I don't know if you are aware of this, but some LLMD's think that herpes virus reactivations are a direct result of Lyme infection, and that the thyroid problems are one of the sequelae of the same.

Finally, if you do look for a LLMD, you should make sure they are ILADS rather than IDSA.

Hi,

I believe my doctor is a suitable LLMD. (I live in PA.) He is a part of the Holtorf Medical Group and specializes in Lyme, Fibromyalgia, etc. I got Lyme and was treated when I was five years old. I was tested for it recently and it is not currently active. My results are below:

Lyme, Total Ab Test/Reflex

Lyme Igm Wb Interp. - Negative
Igm P23 Ab. - Absent
Igm P39 Ab. - Absent
Igm P41 Ab. - Present
Lyme Igg Wb Interp. - Negative
Igg P18 Ab. - Present
Igg P23 Ab. - Absent
Igg P28 Ab. - Absent
Igg P30 Ab. - Absent
Igg P39 Ab. - Absent
Igg P41 Ab. - Absent
Igg P45 Ab. - Absent
Igg P58 Ab. - Present
Igg P66 Ab. - Absent
Igg P93 Ab. - Absent
Lyme Igg/Igm Ab - 1.41 - 0.00-0.90 (reference range) - ISR (units)

Are these tests not good enough, and should I still get further testing?

 

[jlynx]

Hey,

My appt with Dr. Wittels went well. They just moved to a new office location so things were a little crazy I had to wait for an hour. I didn't expect the number of people coming in for treatment. I guess because she accepts insurance which is great. She gave me some supplements to take for acid reflux and she also wanted me to extend my Lyme treatment with natural herbs. She also wants to check me for gluten sensitivity as I was complaining about bloating lately. So I think overall I'm satisfied with her approach. How are you doing?

Hey,

Wow that is awesome that she accepts insurance. I kind of want to switch to her just because of that. The bills from Dr. G are really killing me. I'm glad to hear it went well. Maybe I will start seeing her down the road for other stuff as I'd like to check for food sensitivities. I also want to see a chiropractor (the fatigue makes me have awful posture and has probably screwed up my back), and I would like to try acupuncture. But I'm only able to work part time from home so money is tight.

I haven't made any progress yet still. I'm going to NJ tomorrow for a concert so I'm not sure how it's going to go. There's going to be a lot of walking and stress so hopefully it's not too bad. I kind of jumped the gun and bought tickets a while ago when I thought I was getting better. But it will be nice to do something since I can't do much anymore. Are the supplements helping you?

 

[msf]

Hi Jlynx, I think the way the western blot is read depends on the doctor, but if you still have IgM antibodies (even a non-specific one) to Lyme there is a least a chance that you are still infected. I think it would at least be worth getting a second opinion, if you can afford it, or alternatively get the Infectolab LTT-ELISPOT done, as if this comes back positive you know you have an active infection.

 

[msf]

Sorry, check my thread about the ELISPOT in the Lyme forum - it seems that the Lymespot (the new version) is more sensitive in this regard.

 

[vergarm]

hi jlynx,

I suffered a minor setback. I had an endoscopy done last week coz I was experiencing some pain 2 weeks ago when I'm swallowing food, even with drinking with water or burp. I was worried that it might be Barretts Esophagus. I was diagnosed with mild gastritis (I was told no Barretts or H. Plyori infection). They prescribed an antacid. I also spread out my meals to avoid indigestion. I think the one supplement that Dr. Wittels gave me (Glutagenics) really helped control the gut inflammation. Overall, I'm feeling better. I bought a book called 'Dropping the acid diet' from Amazon so I can choose some meals to help my gut heal. How are you doing?

 

[jlynx]

Hi @vergarm ,

I'm sorry to hear you're having trouble. Do you think the antibiotics caused your gut issues?

I'm okay, maybe a little worse, not sure. I am going to ask Dr. G about possibly taking Provigil for my fatigue, some people have success with it. I'd rather not take chemicals but my quality of life is poor and I believe there has to be something that can give me just a little boost. It seems that I'm sensitive to some medications so I may not be able to tolerate it, but it's worth a try. It also depends if my insurance covers enough of it. If I could just be feeling 5% better then that'd be great; I just want a little improvement.

I wish he was a little more helpful in suggesting any possible options for me, because I am always researching the latest studies and what has worked for people and looking for things to mention to him. But not a big deal. I know the Valcyte can take a long time to work but I just think there has to be something to help a little in the mean time.

 

[Hip]

@jlynx
You seemed to have missed the post about parvovirus being able to cause ME/CFS.

 

[jlynx]

@jlynx
You seemed to have missed the post about parvovirus being able to cause ME/CFS.

@Hip , I'm aware that Parvo is a contributor and I believe IVIG is the only effective treatment for it? When I mentioned it to my doctor I believe he said he wanted to wait to treat it until after my HHV-6 levels have been brought down. Is this incorrect and I can be treating it now as well?

 

[Hip]

@Hip , I'm aware that Parvo is a contributor and I believe IVIG is the only effective treatment for it?

High titers to parvovirus B19 can be the unique and singular cause of ME/CFS. And parvovirus B19-induced ME/CFS is one of the rare causes of ME/CFS that is treatable (with IVIG) and curable.

In this sense, patients whose ME/CFS is due to parvovirus B19 are very lucky, because this is curable.

I am not sure why your doctor wants to get your HHV-6 levels down first, but be aware that it is possible your ME/CFS may be caused entirely by your elevated parvovirus B19.

Jonathan Kerr has performed quite a bit of research on parvovirus B19-induced ME/CFS, and you can see his published studies here.

 

[jlynx]

High titers to parvovirus B19 can be the unique and singular cause of ME/CFS. And parvovirus B19-induced ME/CFS is one of the rare causes of ME/CFS that is treatable (with IVIG) and curable.

In this sense, patients whose ME/CFS is due to parvovirus B19 are very lucky, because this is curable.

I am not sure why your doctor wants to get your HHV-6 levels down first, but be aware that it is possible your ME/CFS may be caused entirely by your elevated parvovirus B19.

Jonathan Kerr has performed quite a bit of research on parvovirus B19-induced ME/CFS, and you can see his published studies here.

Thank you for telling me this. I will definitely be bringing this up with my doctor at my next appointment (July 2nd). This is beyond frustrating that I could possibly be doing much better if I had been treating the Parvo before now. I hate to have to switch doctors but I feel like he should be aware of this so this is disappointing.

I hope I am able to start the IVIG therapy after speaking with him about it.