Healthy 34yo Having Sudden Issues. Doctors Clueless.

[Hip]

I've heard doctors mention dysautonomia before, but is there any test for that? It doesn't seem like it.

Three types of dysautonomia which involve feelings that you are going to faint are:

Postural orthostatic tachycardia syndrome (POTS)
Neurally mediated hypotension (NMH) — also called neurally mediated syncope, or neurocardiogenic syncope
Orthostatic hypotension (OH)

The symptoms of POTS include: postural tachycardia (increased heart rate on standing), headache, abdominal discomfort, dizziness, feeling faint, nausea, fatigue, lightheadedness, sweating, tremor, anxiety, palpitations, exercise intolerance.

Symptoms of OH or NMH include: dizziness or light-headedness, feeling that you are going to faint, blurred vision, confusion, weakness, fatigue, nausea. These symptoms appear within a few seconds or minutes of standing up after you've been sitting or lying down, and will disappear if you sit or lie down for a few minutes.



POTS is a condition where your heart rate goes up by 30 or more on standing from a lying down position. If you have this, then you are diagnosed with POTS. Very simple.

OH and NMH are conditions in which your blood pressure drops upon standing. In OH the pressure drop is usually immediate; in NMH the drop occurs after a long period of time standing, or also sometimes after having an unpleasant or upsetting experience.

Orthostatic hypotension (OH) is diagnosed when, on standing from a sitting or lying position, there is a fall in systolic blood pressure of 20 mm Hg or more, and/or a fall in diastolic blood pressure of 10 mm Hg or more within 5 minutes from standing. In some people with OH, the drop in blood pressure can take up to 10 minutes to appear (this is called delayed orthostatic hypotension).

These blood pressure measurements can be made with an ordinary home blood pressure meter. Note that a blood pressure reading is expressed as systolic / diastolic, for example: 120 / 80.

The above copied from my roadmap of chronic fatigue syndrome (ME/CFS) viral tests and treatments.

 

[caledonia]

@Thinktank :
@caledonia : I will look more into the B12 links you posted. During the past year, my body temperature hangs out around 96-97. I will take look at that link you sent. About a year ago I had a urine cortisol test. Is that different/better/worse than a saliva one?

If it's a morning cortisol test, it's not that useful. Mine showed normal, but my 24 hour saliva test showed flatlined adrenals. I have many symptoms consistent with adrenal fatigue.

I forgot to mention, there is a thyroid condition called Hypothyroidism Type 2. I actually ran into a guy who has this. All his labs looked normal - he had a CFS diagnosis and was very impaired. He fit the profile, so he started taking massive amounts of thyroid hormone, and he is almost back to normal energy levels. There is a book by Dr. Mark Starr with all the info. http://www.amazon.com/Hypothyroidism-Type-2-The-Epidemic/dp/0975262408

 

[maryb]

Gordon Medical Associates in CA are very good, have NDs as well as MDs, Expensive but have heard encouraging reports from people who have travelled from the UK for diagnosis/treatment.

 

[Ellkaye]

What's your cd4 count?
Do you have HHV6 by pcr?
Vitamin D test?
Vo2max score?

 

[heat123]

I got my EBV test results back, and it is a mix of Positive and Negative. Can anyone shed some light into this, especially based on their personal experience:

Component Standard Range Your Value
EBV VCAIGG Negative Positive
EBV VCAIGM Negative Negative
EBV AB Negative Positive
EBV INTERPRETATION Non Reactive Reactive
COMMENT 35 Past EBV Infection.

 

[heat123]

Got my CMV test result back and it is positive. So EBV and CMV both positive, but my PCP is saying basically to ignore it..

 

[valentinelynx]

I got my EBV test results back, and it is a mix of Positive and Negative. Can anyone shed some light into this, especially based on their personal experience:

Component Standard Range Your Value
EBV VCAIGG Negative Positive
EBV VCAIGM Negative Negative
EBV AB Negative Positive
EBV INTERPRETATION Non Reactive Reactive
COMMENT 35 Past EBV Infection.

These results are not helpful. They just tell you have been exposed to EBV. If you have EBV reactivation (common in ME/CFS and Lyme) your antibody titers will likely be elevated (positive but higher than normal positive). You need to get actual antibody titers (in U/mL), not just the +/- . Also helpful would be actual viral load (PCR?). I haven't had the latter yet myself, so not sure what is ordered. If you have reactivation of EBV then antivirals might help.

 

[heat123]

I did the Complete Lyme Panel and the results came back, everything was 'Negative' except on the IGG Western Blot page, IGENEX result says Positive and CDC is Negative.

I spoke with Bob Giguere from Igenex, who by the way was extremely knowledgeable and friendly, and he said it appears that I have been exposed to Lyme at sometime in my life (even though I never had a bulls-eye). about 15 months ago I became symptomatic after taking a single 60mg dose of Prednisone after an allergic reaction. From there, Doctors thought it might be MS so I as put on Prednisone for 2 months which made everything worse. Since then I have been on Cymbalta which has helped managed some symptoms but I still have daily issues. I have Kaiser HMO and the doctors there are only interested in managing symptoms.

What we are planning on doing is this:
1) Ordering co-infection testing from Igenex
2) Seeing 2 local LLND/LLMD to get another interpretation of results and to see treatment plan
a) Dr. Ducharme at restormedicine has been recommended by a couple of peopel
b) Contacted ILADS, and got a list of 3 LLMDs in my area but could not find much information on them. Does anyone know anything about these people? Therese Yang MD, Neil Hirshenbein MD, PhD, James Novak MD.

Any other recommendations or advice? We just found out these lab results and are overwhelmed and saddened by this news but am looking for my best chances at recovery from this.

Thanks in advance!

 

[digital dog]

Heat, have you taken ANY drugs prior to your illness (recreational or prescribed)? Or any supplements like fish oil?

 

[Ellkaye]

Fish oil is good. Krill oil. Marine omega oil. And good nutritional supplements and multivitamins. Just like they give in cancer. Very important.

 

[Ellkaye]

Valentijn n Kina my goal is to get you to 'like' at least one of my posts by the end of the year !

 

[digital dog]

Fish oil is good for the vast majority of people.
It nearly killed me and was significantly worse than ANYTHING i have had in the last two decades. Worse than ANY pharmaceutical drug. I am still suffering the effects two years after taking fish oil.
Some people cannot tolerate its affect on the brain. It gave me anxiety that was so catastrophic I can't even begin to explain.
For most people it is a wonderful supplement.
If you goggle Fish Oil and anxiety it is not uncommon.
Be careful folks.

 

[Ellkaye]

Sounds rare but important info digital dog thanks

 

[Hip]

my symptoms were (and are): extreme daytime tiredness/fatigue, vestibular issues (motion sensitivity), unrefreshed sleep, tingling/numbness in limbs, scalp, face, muscle spasms, muscles cramps (legs), difficulty walking (stiffness, spacticity, weakness), sleep issues / insomnia, near bouts of fainting, light sensitivity, tinnitus, cold intolerance (my body used to be naturally warmer), hands/arms/feet going numb, cold feet, physical symptoms of panic/anxiety without the emotional.

Just reading your symptoms again: most are classic symptoms of chronic fatigue syndrome (ME/CFS), a condition which as you know, can sometimes be triggered by viruses such as enteroviruses or Epstein-Barr virus.

However, some of your symptoms — namely leg weakness/spasticity, vestibular problems, tingling/numbness in limbs, cold feet, panic/anxiety —struck me as being very similar to the symptoms triggered by the unusual virus that I caught.

The virus I caught is most likely an enterovirus such as coxsackievirus B, but seems to a nastier strain. Details of this virus on my website here:

Chronic Sore Throat / Mood Virus

In my case, this virus I caught induced significant mental as well as physical symptom (mental symptoms such as extreme anxiety and mental tension for no external reason, and anhedonia).

But I also have the strange leg weakness/spasticity (mainly in my pelvic girdle), which makes my legs/hips feel slightly spongy or putty-like. Though it should be noted that there is no real loss in physical strength of my legs, more just this spongy feel. On my website, I speculate this may be due to mild polymyositis, a disease which causes leg weakness and can be triggered by coxsackievirus B (though this is just a pure guess).

 

[Ellkaye]

Polymyositis.... does that have anything to do with polyoma viruses??