Would appreciate your wisdom....now 80% bedridden.....

[Vineyard1]

Greetings to Everyone....I would be appreciative of your thoughts....prior to September 5, 2015 I strugggled with unreitting infections, orthostatic intolerance, neuro isues etc.....BUT i was able to maneuver around my house with asional lying flat rest periods and actually leave my house for 90 minutes at a time....dinner with husband...yoga class...do an errand and lie flat in my car.try another errand....you get the idea.

Since September 15, 2015 I have had 4 infections , one requiring hospitalization for 5 days.
I have been SEVERELY struggling. Neuro problems worse and include extreme sensitivity to sound and to light, severe head pressure , severe lymph node pain back of head, cant process information well, cant concentrate etc. Central Nervous System problems...cant be upright for any real length of time, tahycardic ( heart rate 112 to 122 with trying to cook a simple meal, sit in the shower, walk around my home and this is accompanied by shortness of breath, poor temperature regulation and waking up in the middle of the night tachycardic. There is more ...but I know you all get it.

For my part, I have my 3rd IVIG infusion on Monday (1st one no side effects, 2nd fusion worsening of the severe headache that lasted 3 days and hip and leg bone pain that lasted 5 days. For Monday, they are going to slow down the rate and add more fluids. It takes all I have to get there as well as doctors appoinments. My PCP sent me to a hematologist in October for my low IgG and elevated serum electropharesis and though he does not know CFS he thought it wise to start IVIG as my labs were showing chronic inflammation.

I made an appointmnt with a neurologist for Tuesday to see if he would ordr a PET scan to see what is going on...my husband printed out the recent study of CFS abd PEt Scan so I could show him

I want to make an appointment with a cardiologist but am very concerned she will order a stress test which will worsen things...I am hoping she would order a 24 hour Holter Monitor ....that would be vey telling....does anyone have any suggestions on how to approch this?

I also was thinking of asking my PCP for an oxygen trial. I am sure my o2 sats would be in the high 90s but I feel so oxygen deprived!!!!!!! Has anyone had suucess with oxygen therapy? and what can I do to get some energy into my cells quickly...take D Ribose or something?

I also made an appointment with a Naturopathic MD but the appointment isnt until the end of December.

It will take everything I have to make these appointments and try not to appar like I am exxagerrating by immddiately lying on their table. I have had CFS/ME for 15 years and this is the worst since I was diagnosed.
I am sad I will miss Thanksgiving with my family, and miss dinner with my husband to celebrate our 25th wedding Anniversary on Tuesday.

I always thought that I mostly handled this horrific illness with grace and optimism over the past many years but when you cant walk, talk or even sit up for very long it challenges you to your very core.

Were would people with CFS/ME find out abut how to part of any new research at the NIH...I am willing to move in with them....they can study me extensively...I have alot of material for them to work with ...as I am sure all of you do too....

Does anyone have any other words of wisdom or advice?

Blessings and thanks to everyone!

 

[halcyon]

I am hoping she would order a 24 hour Holter Monitor ....that would be vey telling....does anyone have any suggestions on how to approch this?

I've had good luck just straight up asking for one based on my symptoms.

 

[TiredSam]

I want to make an appointment with a cardiologist but am very concerned she will order a stress test which will worsen things...I am hoping she would order a 24 hour Holter Monitor ....that would be vey telling....does anyone have any suggestions on how to approch this?

I'm nowhere near as ill as you, but I was referred by my GP to a cardiologist for a stress test. I told my GP to change the prescription to echo cardiogram and not mention a stress test, which he did. When I got to the cardiologist he wanted to do a stress test anyway, which I flat out refused. It was a bit awkward, because he didn't seem to know anything about ME, but if you refuse to do one they can't make you. We agreed to do an ECG at rest. He also suggested that he could shove a tube all the way up me to look at my heart instead, I'm not sure if he was trying to bully me or not, but I just said no thanks I won't have that either.

If I went again I would refuse again, but I would also take some literature that the cardiologist is likely to respect (ie produced by a doctor or hospital rather than a support group) about ME and why any exertion, including a stress test, is a bad idea. Maybe another forum member can point you to such a document, I'm afraid my literature for doctors is in German.

Sorry your health has taken such a dive. I hope you find some improvement.

 

[Tammy]

I am sorry you are suffering so much. You mentioned that you have had 4 infections since Sept. 15. What kind of infections? Did they specify what pathogens were causing the infections?

 

[CFS_for_19_years]

I also was thinking of asking my PCP for an oxygen trial. I am sure my o2 sats would be in the high 90s but I feel so oxygen deprived!!!!!!! Has anyone had suucess with oxygen therapy? and what can I do to get some energy into my cells quickly...take D Ribose or something?

It's unlikely that a doctor will prescribe oxygen unless your oxygen saturation is running 90 or less.

For energy, I've found that PQQ helps. These tablets are 20mg and can be split nicely with a pill cutter if 20mg is too much for you. Don't take it after 1 p.m. or you may have problems with insomnia. I find 5 -10mg/day to be about right for me. Some people say PQQ makes them feel wired and so they can't tolerate it, but others have gotten good benefits.

www.amazon.com/Source-Naturals-Mind-Supplement-Count/dp/B00BQS87D2 (60 tablets)

http://www.amazon.com/Source-Naturals-021078025184-Mind-Tablets/dp/B00EEEMB32 (30 tablets)

 

[5150]

I've had good luck just straight up asking for one based on my symptoms.

I've had good luck just straight up asking for one based on my symptoms.

Yes, this is what I have evolved to: first ask nicely. If they persist, turn your nice "ask" into a polite No. "no physical stress test, & no chemically induced upturn of the heart rate". Just say no. in a firm but courteous way.
best wishes.

 

[Little Bluestem]

It will take everything I have to make these appointments and try not to appar like I am exxagerrating by immddiately lying on their table.

I have only moderate ME and I lie on the table until the doctor gets to the room.

 

[Ellkaye]

perhaps get your cd3 , cd4 , cd8 counts and ratios measured even if your lymphocyte values are okay. Look forward to hearing your values.

 

[Vineyard1]

Thank you to everyone for your replies...much appreciated!

 

[Firefly_]

I have the same damn problems with feeling oxygen deprived. My Drs just look at me like I'm crazy because my o2 sats are always 97-99. They just want to say I have copd because I was a longtime smoker (quit before I became ill) but it comes and goes and seems to me to be worse on bad days. Had an upper g.i. yesterday and was having a pretty bad day (very fatigued and achy) but during and after the procedure they gave me oxygen and I felt a lot better for awhile after that.

 

[5150]

Yes, this is what I have evolved to: first ask nicely. If they persist, turn your nice "ask" into a polite No. "no physical stress test, & no chemically induced upturn of the heart rate". Just say no. in a firm but courteous way.
best wishes.

Edit: re the Holter monitor. There is no sane reason for refusing this to you, if you have shown need & it is projected to help your case come into a clearer focus.

 

[taniaaust1]

Hi, I haven't got much in the way of words of wisdom but I can say I certainly relate.

It was a 24 hour Holter Monitor test which was done for a ME/CFS study which first picked up my orthostatic hypertension. Make sure you record when you are laying, sitting and on feet while having this done so you can match results with your actions or just before actions.