Experience with Dr.Levine

[SOC]

usually CFS patients when they undergo medical tests don't have anything wrong with them clinically/pathologically. (They may develop medical conditions further down the line due to a restricted lifestyle). That means drugs are not the answer, although they might reduce some of the symptoms.

My daughter and I have a number abnormal lab results, although most of them are not tests usually done by a GP. Many of the abnormalities are immune-related.

We do not have a cure. That's a fact. However, medications can make a huge difference.

 

[Sushi]

Really ? what did this specialist find? and did the specialist have any idea where this 'abnormality' had come from?

Hi Barbican,

As you have more time here to read you will see a lot of people listing their abnormal test results. They usually fall in a few categories: abnormal immune function, screwed up gut ecology with infections, pathogens--both viral and bacterial, abnormal brain scans, high inflammatory cytokines, abnormal functioning of the autonomic nervous system, partially blocked methylation, low NK cell number and function--probably forgot some others.

And yes, my doc found all that! Some of it is "primary"--as in a pathogen may have come first or there is a genetic predisposition, some may be secondary, and some may fall in the "domino effect" category--one system goes out of whack and throws another system out of whack....

Lots of people have posted their actual lab results here.

Best,
Sushi

 

[cosmo]

usually CFS patients when they undergo medical tests don't have anything wrong with them clinically/pathologically. (They may develop medical conditions further down the line due to a restricted lifestyle). That means drugs are not the answer, although they might reduce some of the symptoms.

What would you say is the answer, if you don't mind me asking?

 

[heapsreal]

What would you say is the answer, if you don't mind me asking?

its not that they dont find anything in tests done on cfs but its that they arent looking in the right spot/doing the right tests or interpreting them correctly.

 

[cosmo]

its not that they dont find anything in tests done on cfs but its that they arent looking in the right spot/doing the right tests or interpreting them correctly.

Oh I know, I'm just interested in what barbican believes the answer is, if he knows that drugs are not, I would think he has some idea as to what may help.

 

[vli]

its not that they dont find anything in tests done on cfs but its that they arent looking in the right spot/doing the right tests or interpreting them correctly.

AMen

 

[taniaaust1]

Hi Barbican,

As you have more time here to read you will see a lot of people listing their abnormal test results. They usually fall in a few categories: abnormal immune function, screwed up gut ecology with infections, pathogens--both viral and bacterial, abnormal brain scans, high inflammatory cytokines, abnormal functioning of the autonomic nervous system, partially blocked methylation, low NK cell number and function--probably forgot some others.

Best,
Sushi

Add vitamin/mineral deficiency (eg D, low ferritin) and hormonal problems (eg low morning cortisol, low testosterone ) to that list too.

 

[taniaaust1]

usually CFS patients when they undergo medical tests don't have anything wrong with them clinically/pathologically. (They may develop medical conditions further down the line due to a restricted lifestyle). That means drugs are not the answer, although they might reduce some of the symptoms.

That may be the case for "cfs" patients but not so the case for those of us who have ME when a doctor does tests into the areas which often show up ME abnormalities.

eg some common abnormalities I myself have which are often found in ME patients are:
1/ Vitamin D deficiency (one kind of mine is normal while the other is very low..showing Im using it faster I can convert it.. something in my body is using it all fast)
2/ low ferritin (iron storage)
3/ abnormal EEGs on our brains (2 out of the 3 Ive had done have been abnormal). Our brains show certain non specific abnormalties
4/ abnormal Rombergs (shows neurological issues
5/ Low testosterone
6/ low cortisol
7/ borderline low white blood cells (said to indicate chronic infection)
9/ POTS, dysautomonia, narrowing of the pulse pressure, orthostatic hypertension, orthostatic hypotension I have all 5 different kinds of dysautonomia Dr David Bell finds in his ME patients
8/ (I cant think what else right now but I probably have 1 or 2 more... I havent even had all the ME recommended tests looking for the ME abnormalies done either.. I havent had the recommended for ME immune tests done).

Anyway.. there are LOTS of abnormalities found in ME and if you have ME you should test positive to some of these if right tests are done.

Most ME patients will need a drug or more to treat the issues ME causes. Im on 7 prescripton drugs.

 

[Creamcheese]

Better, not well really. It is the rare patient who gets "well," though some go into remission. This isn't the specialist doctors fault. They are working with the best resources and knowledge that they have. There is just still a lot unknown and few really helpful drugs available.

One of the dangers of "non-specialists" is that their lack of knowledge can do harm in the way they attempt to treat patients. Many of us have experienced that.

Specialists usually help by testing to find out the things that have actually gone wrong--pathogens, dysfunctional systems--and dealing with those to the best of their knowledge. It seems that if the patient is young and hasn't been sick long, the chances of remission are much better.

I see a specialist and have improved a lot....but I am not well.

Sushi

Hi Sushi. I do recall your name from a few years back when I was active here. Is good to see familiar names; but can't recall what name I used, then. Have seen and heard Dr. Levine at NJ conferences. As a nurse, and someone quite ill, I do respect her as a knowledgeable specialist in immunology. I see Dr Natelson for several years since can take train there. He is compassionate, and does research, also. Not want to go through changing doctors unless I have to. After years spent seeing Paul Cheney with private insurance; it has been several years mostly feeling disconnected and without effective new treatments. Am chemically sensitive; most drugs make me flare or relapse...am getting too old to experiment. So pacing, prayer, diet and meditative practice and music are my 'go to' treatments. Am sorry for Daffodil having a negative experience. Most of us know the feeling, when are at our most vulnerable.