Upcoming appt at Open Medicine Institute!

[Gingergrrl]

Thanks again to all and we are leaving hotel in about 10 min for my appt. This is the first time I have felt really nervous both about what my tests might show and about the treatment. I will be so relieved once I know the information and what I do next!

 

[NK17]

Crossing my fingers for you @Gingergrrl43. We're all here on PR to catch you if you fall

 

[Gingergrrl]

I am back from appt and was there most of the day b/c I attempted to have a saline IV which did not go so well. I will explain everything but feeling quite overwhelmed at the moment!

I am hoping you guys can help me interpret the results and I have a lot of questions!

- CMV was negative on all counts.
- EBV was extremely high positives on all counts showing current re-activation.
- HHV-6 positive for past IgG but negative IgM.
-Clam. Pneumonia was neg IgG yet positive IgM which Dr. K found strange and re-ran that test to confirm.
-HSV1 was very high positive IgG and IgM unclear.
-VZV positive both IgG and IgM.
- Mycoplasma negative all counts.
- Parvovirus oddly the lab did not give IgG but IgM was negative. However b/c of my shortness of breath, he is repeating Parvo IgG and ordered Parvo PCR test b/c said this virus can attack the heart which scared me.
- Lyme & co-infections all negative.
- NK functioning which should be around 100, my score was only five! This scared me too.
- On the MTHFR gene I am compound heterozygous for both mutations C677T and A1298C which he said was bad and impairs my body's ability to recover from EBV which also scared me.

But here is what scared me the most. He said that even though he believes my cardiac symptoms and shortness of breath are from the EBV and subsequent POTS, low blood volume, OI, and dysautonomia, he would be negligent if he did not test for angina and wants me to do an exercise echocardiogram and wants to talk to my cardiologist.

This terrifies me b/c the test would be without my beta blocker Atenolol or Florinef and my tachycardia would be off the charts! I am afraid I could die or have a major CFS relapse from trying to exercise and never regain functioning (which is already low!)

So here is my total treatment plan:

1) I will be taking Famvir 500 mg x2/day with plan to increase dose in a few weeks if I can tolerate it.

2) I will be taking a supplement called Epicor to boost my NK functioning. You guys should Google Epicor and it has an interesting story.

3) I will be getting methyl B 12 shots 3x/wk for a month from compounding pharmacy.

4) I will be taking Folate called "5MTHF" 1x/day (he told me the company he recommends but I have to check my notes.)

5) I will be increasing my daily Florinef dosage (which scares me)

6) I will be having some kind of exercise stress test for my heart.

7) I re-did blood tests today for Parvo and clam. pneumoniae due to missing and unclear tests. He also tested me for HHV-7 (didn't even know about this one?!) and did some new tests for mast cell disorder/reactions.

8) Lastly, he wanted me to get saline IV's 2x/wk and to try first one in his office today. I was thrilled to try it but two nurses were unable to get the IV catheter in my arm and tried four times including my hand but could not get it in.

Finally they got a smaller butterfly needle in my arm but said the IV would take several hours w/smaller needle. I was okay with this until half way through the IV, my vein burst so they had to stop. It was painful and not fun.

So I don't think I am a candidate for IV's and they said my veins are very small and move around plus the low blood volume. I don't blame them and I have consistently had problems with blood draws & IV's no matter where I go.

I was equally impressed with Dr. K at my follow up visit as at my first visit and he is an incredibly kind, patient and gifted doctor. He answered all my questions and my next follow up will be over the phone in a few weeks.

I learned from the nurses that his practice is filling up super quick and that I got in as a new patient at exactly the right time to which I said a silent thank you to God and you guys at PR who told me about OMI.

I also got to meet Dr. Kogelnick today while I was having my (attempt) at the IV. He was also very kind and when I told him we drove up twice from LA he said that his dream is to open a second location in LA which almost made me cry (but he said this is just on his wish list and not happening any time soon.)

So overall Dr. K felt that the EBV and low NK functioning were behind my problems but wanted a few more tests to be certain. Plus the bad MTHFR stuff adding to my problems. He is hoping the Famvir can knock out the EBV enough that I can feel better.

I will also be continuing with Monolaurin and all the supplements and diet plan from my naturopath and meds from cardiologist & thyroid.

If anyone can explain the MTHFR stuff to me and the amounts of Methyl B and Folate that newbies usually start with I would be very grateful! I am afraid he may be starting me too high.

Thanks for reading and sorry this post was so long!

ETA: I would also love feedback from anyone who has done the exercise stress test w/a cardiologist.

 

[AndyPandy]

Wow @Gingergrrl43 that's a lot for you to take in. At least now you have a much better idea about what you are dealing with and have a great doctor to guide you and a plan for treatment. Still scary and overwhelming though.

Thinking of you.

 

[Sushi]

@Gingergrrl43

I just have a minute now but want to reassure you about MTHFR. Your results are very common among this patient population. One of the main effects of these SNPs is impaired methylation and Dr. K has prescribed supplements for methylation. Almost all ME/CFS patients have problems with methylation. Hence so much discussion of it here.

So now you have more threads to study! But there are very knowledgeable members here, so you aren't alone.

I'll leave the rest with others, except to say that it sound like we have "twin vein-types!"

Great appointment!
Sushi

 

[SOC]

@Gingergrrl43,
I know it sounds scary, but remember that your lab results sound similar to those of a lot of us and we're still here... and improving. Look on the bright side, you now know what's wrong with you and have an excellent doctor who has given you an excellent treatment plan. It's uphill from here.

Too bad a bout the problems getting the IV saline. I'll bet there's people here who can give you advice on improving access to your veins for IVs and blood draws.

If anyone can explain the MTHFR stuff to me and the amounts of Methyl B and Folate that newbies usually start with I would be very grateful! I am afraid he may be starting me too high.

You might want to rethink this. Do you really think a bunch of strangers on an internet forum will give you better advice than a top-notch ME/CFS doctor who has all your labwork in front of him?

 

[Gingergrrl]

@SOC your comment made me laugh but the reason I asked the question here is b/c I have read in so many threads on PR including the late Rich Vank, RIP, to start "Low and slow" with methylation supplements and Dr. K said he likes to start them high right away.

He agreed however that is is okay to start them lower if that is my comfort zone so I wanted to get some feedback here (and then of course make my own decision!)

 

[SOC]

@SOC your comment made me laugh but the reason I asked the question here is b/c I have read in so many threads on PR including the late Rich Vank, RIP, to start "Low and slow" with methylation supplements and Dr. K said he likes to start them high right away.

He agreed however that is is okay to start them lower if that is my comfort zone so I wanted to get some feedback here (and then of course make my own decision!)

I see. If he's okay with it, and you're more comfortable, then it sounds like a good plan. We, as a group, do tend to be sensitive to meds and supplements, but I expect Dr K knows that.

 

[xchocoholic]

Your appt sounds like a dream come true for any pwc.

Fwiw, I tried doing a cardiac stress test years ago but was booted off the treadmill. It was probably 10-15 years ago and I was very sick at the time.

I was still eating gluten and had ataxia so walking slow was a struggle much less walking fast. Ataxia was in my medical records but I had no idea what the term meant. It would've been nice if my doctor had read these records. You'll definitely want to know if you have ataxia before trying this. The Rhomberg test will tell you.

What I remember being told is that readings were too irregular to provide valuable information. My cardiologist ran a chemical stress test instead.

I have a left bundle branch block but have been told it's insignificant. Because most of the doctors I've seen since getting cfs have gone out of their way to down play my symptoms I no longer know what to believe. I've had serious kidney infections and life threatening bleeding ignored.

Based on my test, I wouldn't worry about the cardiac test if they go thru with it but imho I'd decline it if you have ataxia. They will stop you before things get dangerous. Well they should anyways. Lol. Bring your hubby.

Tc .. x

 

[daisybell]

Scary to see your results in black and white I imagine, but great to have Dr K looking after you and making a plan to improve your health!

Wishing you all the best with your road to better health....

 

[IreneF]

I had a PICC line for a couple of months. It's a kind of tube that goes right into your vein. A pain in the ass because you can't get it wet, but it's great for people with bad veins.

I think mine used to be even worse than they are now, because getting a blood test used to be torture, and now it's no prob. I used to have low blood pressure, too--I'm not sure if it contributed.

 

[Gingergrrl]

@IreneF Did you do anything to improve your veins so blood tests got easier or did they just get better on their own?

 

[IreneF]

@IreneF Did you do anything to improve your veins so blood tests got easier or did they just get better on their own?

I didn't do anything intentionally. I'm just fatter and have higher blood pressure. I do try to drink more if I know I'm going to get a blood draw, but liquid usually goes right thru me.

The PICC line was convenient when I had to have frequent IV treatments (2-3X week) because they could just hook me up without hunting for a vein. I was hospitalized part of that time. I wasn't exactly healthy enough to care that I had a tube coming out of my arm.

 

[Hanna]

That's great @Gingergrrl43 to have amuch clearer picture about the situation and to have a great doc to move in the right direction.
About blood tests, like IreneF, I use to drink a lot before, loading body with salty water in order to increase blood volume and that helps. The second tip (for me it works) is to avoid beeing cold. I use a warm bottle or anything else (to keep my arms warm, it prevents from my veins to "retract").

Before doing this, it was quite impossible to take blood and nurses, docs etc were queing up in hospital to try to get a vein, and they used to call a surgeon...or simply gave up.

 

[Valentijn]

@IreneF Did you do anything to improve your veins so blood tests got easier or did they just get better on their own?

I make sure to drink plenty of water prior to an IV line going in, and to avoid coffee or any other diuretic. Running the intended IV site under hot water can also help, as that gets the veins to expand a bit and move closer to the surface of the skin.

My IVs always have always gone into the backs of my hands, though it sounded like the home nurses thought I should get a PICC line or port or whatever, due to the problems they have finding my veins (even on my hands!), but my local Dutch GP won't get involved in my ME care, so I don't see that happening any time soon.

 

[Gingergrrl]

@Hanna and @Valentijn They actually were able to do the blood draw but the IV for the saline is where three people tried and it ultimately blew out my vein. I didn't know I was going to be trying the IV today so there was no chance to warm up my arm or do any of those tricks. I did drink a full bottle of water but I guess it wasn't enough!

 

[Gingergrrl]

@Sushi I wanted to add re: the MTHFR test that Dr. K said that approx 30% of the general population has the two mutations that I have but approx 95% of the ME/CFS population have them.

Does this mean that getting CFS then changes our methylation or vice versa, that we have these mutations from birth and therefore more prone to CFS?

 

[Valentijn]

@Hanna and @Valentijn They actually were able to do the blood draw but the IV for the saline is where three people tried and it ultimately blew out my vein. I didn't know I was going to be trying the IV today so there was no chance to warm up my arm or do any of those tricks. I did drink a full bottle of water but I guess it wasn't enough!

Yeah, IV lines are more difficult that blood draws. When trying to find a vein at my first infusion in KDM's clinic, they tried my usually blood-drawing spot at the inner elbow, and said it bled nicely for collecting blood, but was useless for an IV.

 

[Helen]

This terrifies me b/c the test would be without my beta blocker Atenolol or Florinef and my tachycardia would be off the charts! I am afraid I could die or have a major CFS relapse from trying to exercise and never regain functioning (which is already low!).....



....3) I will be getting methyl B 12 shots 3x/wk for a month from compounding pharmacy.

4) I will be taking Folate called "5MTHF" 1x/day (he told me the company he recommends but I have to check my notes.).....

Thanks for sharing! I´m sure you are in good hands so trust your doctor. Just tell him how you react on the prescribed medications and I am sure he will listen and make changes when necessary.The first quote above I think you should tell him as soon as possible and he will surely discuss this. Don´t go scared and terrified. That´s a bad stress for you.

About the B12 treatment, that is what people in Sweden get from experienced doctors and it makes wonders for almost everyone. I have never heard of bad reactions like described on the forum and I know some doctors who are prescribing it , and also lots of people getting MeCbl. Please tell us about the methylfolate when you have the facts.

I think it is a good idea to start with a high dose 3 d a week ( for most people every second day is better as two days break might give deficiency) as this usually works so well. It is hurting me to read about all struggles with sublinguals and too low doses for many people here. I have got MeCbl injections since 20 years and the first course got me on my feet, actually also skiing, after being sofabound 6 weeks earlier for 1 1/2 year. I do hope you that you soon will feel a lot better.

Best of luck!

 

[Gingergrrl]

@Helen thank you for your feedback and I decided I will not try to arrange the exercise test until after Dr. K speaks w/my cardiologist and they are in agreement.

I also want to clarify w/him when he said some viruses can affect the heart, did he mean Parvo (so if my two newest blood tests rule it out, I am cleared?) or did he mean EBV alone can damage the heart?- b/c in that case, it is too late and I am already screwed as my EBV super high on four different tests!

Also he mentioned wanting to rule out angina which my cardiologist never mentioned so I got scared. He suspects my symptoms are all due to autonomic chaos from the CFS but he is super thorough and doesn't want to miss anything, which I love, but I get scared my heart can't take the test.

I need to clarify that they will stop the test if it gets too dangerous for me.

ETA Thanks for the info on the B 12 shots as well!