Reality of my ME/CFS

[kristysmiles]

I'm new to this forum, but wanted to get others opinions on what's going on. From what I have read some ME/CFS patients have exactly what I'm experiencing, while others describe something totally different. With doctors already questioning the authenticty of ME/CFS these vast differences in symptoms makes me question it as well.

I was diagnosed with ME/CFS about two years ago after returning to the United States from a deployment to Iraq. My symptoms vary widely and have changed over time, making me wonder if they are related or not.

Initially my symptoms included, problems sleeping, mono-like symptoms including fatigue, nausea, sore throat, vertigo, sensitivity to heat. I appear to be more sensitive to infection. A few months later I began getting headaches that felt like a sharp pain over my left eye, then my right eye. Now the headaches just feel like a tingling sensation around the top back portion of my head.

I've experienced a lot of sleep issues with diagnoses including perdioic limb movement disorder and idiopathic hypersomnia. My coordination has decreased, I've begun to experience concentration issues, memory problems and chest pain (diagnosed as idiopathic tachycardia episodes). There is ringing in my ears, but if anything my hearing exam says my hearing has gotten better not worse.

I no longer digest certain foods, and some times experience stomach pain. My menstrual cycles are now 35-55 days apart with severe cramps. I have developed hemrophagic cysts on my ovaries (not sure if related). My eyesight has gotten really blurry and sensitive to light, but my optometrist says everything is fine.

More recently I've begun to get muscle twitches/spasms and body tremors. My weight also fluctates 20lbs each way with no change in diet/exercise.

I've seen a wide variety of specialist and everything they find is idiopathic (unknown cause). My symptoms aren't as severe as a lot of the ones I've heard mentioned, but it also makes me feel like no one believes I'm sick. I'm sure everyone has posted suggestions and opinions in this forum, but as you can imagine I am too tired to read through each of them and find out what applies to me. My opinion is that I need to be tested for POTS, but my doctors don't even seem concerned with trying to figure out the cause of all my symptoms or trying anything to help. So if anyone has any suggestions I'd greatly appreciate it.

 

[Sushi]

@kristysmiles

First, welcome to the forum! Sorry that you need to be here but I hope you find good company.

One thing that come to mind is the number of vaccinations you would have had. There seems to be a relationship between ME and vaccinations for many of us. Also, have you looked at your toxic exposures? This is another thing that many of us have in common--exposure to toxins and heavy metals.

Best wishes,
Sushi

 

[SOC]

@kristysmiles
You might try writing to Dr Nancy Klimas. She has done research and treatment in Gulf War Illness and is also one of the top ME/CFS docs in the world. I don't know if she has the time to respond to inquiries from non-patient soldiers, but she's a wonderful, involved, compassionate doctor, so she might.

She might be able to give you some clues about things to look into.

 

[kristysmiles]

@kristysmiles

First, welcome to the forum! Sorry that you need to be here but I hope you find good company.

One thing that come to mind is the number of vaccinations you would have had. There seems to be a relationship between ME and vaccinations for many of us. Also, have you looked at your toxic exposures? This is another thing that many of us have in common--exposure to toxins and heavy metals.

Best wishes,
Sushi

I had small pox and anthrax, and I did have a reaction where my lymph nodes in my shoulder got swollen. The lymph node on my supraclavical is still enlarged, but it's not in the parameters that will enable my doctors to do anything about it. I was tested for copper toxicity, but I know that the dirt where I was stationed at had titanium among other things that could be in my lungs. I don't have any respiratory symptoms though, so I don't know how I can convince the military to test for that.

 

[Soundthealarm21]

Have you ever been checked for Malaria? Mold toxicity?

I have a Malaria-like infection, mold toxicity, and Epstein-Barr infection. You could pick up Malaria or another protozoan infection by mosquito or other similar vectors.

 

[Oredogg]

@kristysmiles

Thank you for posting. You have come to the right place. We believe your symptoms are very real, no worries here. I do not have CFS/ME, but my wife does, and is very ill. She shares a number of the symptoms you describe, as do a bunch of other folks on this site. I wholeheartedly agree with @SOC you should see or communicate with a doctor that is very knowledgeable in this disease. Most doctors will not understand your illness and may do more harm to you than good. I can say that with confidence, not only from my experience with my wife, but also because I am one of those ignorant MDs. Fortunately, you seem to be early on in the process (relatively), per your narrative. I would really urge that you seek evaluation and treatment from an expert, sooner rather than later. God forbid you lose your ability to travel or leave the house, as is our case, which makes it even that more difficult to get help. Feel free to send private message if you want. Please take care and know that you are not alone in this.

 

[*GG*]

Welcome to the forum. Are you getting medical aide via your service to our country or are you on your own in that regard?

GG

 

[Martial]

It sounds like you might have also gotten some kind of bacterial infection while being overseas. Definitely suggest testing for Lyme and its associated infections, especially mycoplasma which seems more prevelant in the Middle East for some reason.

Regardless of what some "experts" may tell you it is possible to contract those kind of diseases even in the Middle East. In fact it is much more likely due to all the time spent outdoors, on patrols, F.O.B.S. and Base camps being in the middle of rural areas etc.. You are basically living in a giant canyon if Afghanistan was where you were deployed, run into the same issues in Iraq too.

I am not one to compare illnesses on specific symptoms and the like though, however some of your more exact ones like eye pain sound like PNS infection, the same which happened to me at first.

Get an appointment with an LLMD, and run the lab work through a lab called IgeneX anything else and it is not sensitive enough that you would most likely be wasting time.

 

[minkeygirl]

Garth Nicolson is also into GWS.

http://www.immed.org

 

[kristysmiles]

@Soundthealarm21 I have asked for a mold toxicity test before, because of possible exposure in a barracks room I was assigned to, but they never tested it. Haven't been tested for malaria either, is that prevalent in Iraq? I have tested positive for Epstein-Barr with higher than normal Capsid Ab IgG. Recieved no follow-up on it though.

@ggingues I have military medical care, but I also have civilian medical insurance through my parents (I'm only 22), just not sure who to go to on the civilian side and I'm afraid of having to go through a whole work-up again and being sent to numerous specialty clinics that just send me away and waste my time.

@Martial I tested negative for Lyme, not sure what mycoplasma is or how to convince my doctors to test for it though. I will have to do more research. As for PNS infection, I looked that up and I'm fairly confident in the assumption that I don't have it.

My doctor's gave me the CFS diagnosis August 2012, I feel like it makes doctors reluctant to believe anything is wrong and/or test for anything further. One doctor was so sure I was faking because he couldn't find anything through blood tests that he refered me for a psych evaluation (I'm perfectly sane, though stressed out most of the time)

 

[SOC]

@kristysmiles,
It sounds like you need to go see one of the top ME/CFS specialists ASAP. Most of us will tell you (and you have already discovered) that you would be wasting your time and money seeing GPs and specialists who know nothing about ME/CFS.

There are really only a half dozen or so top biomedical ME/CFS specialists and they have waiting lists, so the sooner you get on a list the better. Count on having to travel a long distance to see one. That's just the way it is with poorly understood illnesses -- you are unlikely to find good local care.

Some conventional (not alternative) doctors to research:
Drs Klimas/Rey/Vera(?) at the Institute of Neuroimmune Medicine at NOVA Southeastern University (near Miami FL)
Dr Kogelnik at the Open Medicine Institute (Mountain View, CA)
Dr Jose Montoya at Stanford University
Dr Daniel Petersen (Incline Village, NV) -- You probably won't get to see him. His waiting list is years long.
Dr Kenny DeMeirler (Reno, NV and Brussels, Belgium)

I'm sure I've forgotten some, but other members can chime in with additions.

 

[Martial]

@Soundthealarm21 I have asked for a mold toxicity test before, because of possible exposure in a barracks room I was assigned to, but they never tested it. Haven't been tested for malaria either, is that prevalent in Iraq? I have tested positive for Epstein-Barr with higher than normal Capsid Ab IgG. Recieved no follow-up on it though.

@ggingues I have military medical care, but I also have civilian medical insurance through my parents (I'm only 22), just not sure who to go to on the civilian side and I'm afraid of having to go through a whole work-up again and being sent to numerous specialty clinics that just send me away and waste my time.

@Martial I tested negative for Lyme, not sure what mycoplasma is or how to convince my doctors to test for it though. I will have to do more research. As for PNS infection, I looked that up and I'm fairly confident in the assumption that I don't have it.

My doctor's gave me the CFS diagnosis August 2012, I feel like it makes doctors reluctant to believe anything is wrong and/or test for anything further. One doctor was so sure I was faking because he couldn't find anything through blood tests that he refered me for a psych evaluation (I'm perfectly sane, though stressed out most of the time)

The sicker a patient is the more likely they will test negative, you need testing through the IgeneX labs to know for sure if this is an issue or not. Also some people test negative through their as well, this is because it is an antibody test, if you don't have antibodies because your body is fighting it hard and depleted it won't show up. Lyme is more of a clinical diagnosis then through bloodwork.

However, there is a much higher chance you will be able to see if any anti bodies show up through IgeneX testing because it tests multiple strains and is much more thorough. I meant PNS infection in terms of bacteria in the Central Nervous and PN System, It could cause the symptoms you mentioned.

You could also do a Blood Smear test to look for infection/spirochetes instead of the anti bodies, this would help a lot as well because it is more likely to catch something with negative anti bodie tests. It is a tad bit more expensive of a test though.

 

[Soundthealarm21]

@kristysmiles

Protozoan infections are a lot more prevalent than people think. The parasites hide underneath biofilm. Your doctor would order a biofilm test from here http://frylabs.com/

IgeneX is a good test for lyme, but can also be indicative of other diseases by having only certain bands show up (which is why you would want a competent doctor).

For the mold test your doctor would order that from here http://www.realtimelab.com/

Did you have a full Epstein-Barr panel done? Should be 4 categories. If so, what were the other numbers?

 

[Aerose91]

Welcome to the forum. Are you getting medical aide via your service to our country or are you on your own in that regard?

GG

I'm not 100% on this but I would bet the V.A. wouldn't do crap for her. I looked into it when I was enlisting and it's kinda b.s. they don't give high quality medical service when it comes to investigatory things. Shame cuz she should never have to pay for another blood test, tooth cleaning or surgery for the rest of her life

 

[Aerose91]

@kristysmiles

I would heed martials advice. I have been sick for just over a year and seen 6 docters- each one having tested for Lyme and it coming hack negative before the 7th did the right test and found it. I would just hold your doctor's hand a little bit and go straight for the IgeniX test. That way there's no more speculation and you can move forward knowing for sure.

 

[alex3619]

There is ringing in my ears, but if anything my hearing exam says my hearing has gotten better not worse.

My eyesight has gotten really blurry and sensitive to light, but my optometrist says everything is fine.

My weight also fluctates 20lbs each way with no change in diet/exercise.

Welcome. I hope you can find some answers, if not here then somewhere.

Hearing exams and eye tests are looking for obvious problems. Underlying neurological inflammation might cause these symptoms and yet not show up in standard testing. I am not saying see a neurologist though, many would not be interested.

Large weight fluctuations are very likely to be fluctuations in fluid. This is probably an endocrinological problem. Problems in fluid regulation are very common in CFS though. Many of us have problems with fluctuating or crashing blood pressure (hence the need for a tilt table test) or low blood volume, as well as dehydration.

I concur that you need to see a doctor who knows a lot about these kinds of things. Nancy Klimas comes to mind for me too though she can be very hard to get to see I think.

My suggestion is to start researching doctors. Find one who has published some things in these topics, even if just letters to journals and not formal studies. There may be some in your local area. A doctor who has friends or family members with similar problems is going to have a strong motivation to keep up to date, and to try to find answers. At least these days we have search engines to help with that.

If there were a lot of cattle in the area of Iraq you were in, then I would also suggest looking to see if you have Q fever. Post Q fever is identical to CFS, but its far more recognized.

 

[kristysmiles]

@Soundthealarm21
I had two EPV panels done, the first didn't give values just POS/NEG indicators, the second EBV test was as follows
Ab: 0.513 (ref range < 0.900 NEG)
Ab IgG: 2.330 (ref range > 1.10 POS) Indicative of current or previous infection
AbIgM 0.084 (ref range < 0.900 NEG)
Early Diffuse Ab < 5.0 (ref range <8.9 NEG)

@Aerose91
The military will pay for my diagnosis tests, but they are only willing to look so far. I'm pretty sure they gave me the CFS diagnosis as a catch-all so they wouldn't have to keep looking. My treatment options are basically non-existent, although VA will pay for some of the alternative medicine treatments when I get out. Though I don't anticpate the VA being any help at all. I'm hoping with the recent scandal and their statement saying they will give more speciality referrals that I can get them to refer me to someone who actually knows whats going on.

@alex3619 I think there is brain inflammation causing the vision and hearing problems, I also have symptoms of TMJ that may or may not be caused by it as well. I've read multiple articles saying that TMJ is related to CFS/ME with brain inflammation as the possible culprit. I have already seen Neurology (not about vision/hearing), but about tremors in my hands and legs, but she thinks it is just physiological. It is good to know about the fluid regulation, which may be part of the problem. When I first came down with symptoms I believe my weight dropped because of loss of muscle due to my inability to do anything from the severity of the fatigue. Have you found a way to minimize weight gain? As a girl that's more concerning to me, although I have noticed a physical difference just one on the scale.

Everyone keeps mentioning Dr. Klimas, and with my service in the Gulf and her experience with Veterans I think she is the best option for me. I will look into getting an appointment with her, but she's on the other side of the U.S. so the logistics might take a while to work out. Maybe I'll get lucky and find someone closer with similar experience. I am currently in between primary care providers so when my new one gets assigned I will take these recommendations to him/her. I wrote down all the lab tests and suggestions, so hopefully my doctor will be willing to at least do some more tests if not delve further into the problem.

 

[Sushi]

@Soundthealarm21
...
Everyone keeps mentioning Dr. Klimas, and with my service in the Gulf and her experience with Veterans I think she is the best option for me. I will look into getting an appointment with her, but she's on the other side of the U.S. so the logistics might take a while to work out. Maybe I'll get lucky and find someone closer with similar experience. I am currently in between primary care providers so when my new one gets assigned I will take these recommendations to him/her. I wrote down all the lab tests and suggestions, so hopefully my doctor will be willing to at least do some more tests if not delve further into the problem.

Dr. Klimas has the experience, yes, but she is generally not taking new patients. There are 2 other doctors in her practice who are though and I'd guess they would consult with Dr. Klimas on patients who have the background that you have. You could try writing to Dr. Klimas--maybe someone here would know how to do that.

Best wishes finding help,
Sushi

 

[NK17]

Welcome @kristysmiles and sorry to hear you are not well and might have ME/CFS.

If you can't get an appointment with Dr. Klimas and you are closer to the West Coast I would call Dr. Andreas Kogelnik at the Open Medicine Institute in Mountain View CA.
I think he still accepts new patients and also works with another MD David Kaufmann as well.

The only problem is that you'll have to pay out of pocket and spend money to travel to his clinic too.

If I was you I would be very aggressive in getting a confirmation of your DX and see if you can get treatments (maybe AV) if indicated from a specialist.

Don't wait too long, you're so young and should sneak in the opportunity window for intervention.

 

[Allyson]

I'm new to this forum, but wanted to get others opinions on what's going on. From what I have read some ME/CFS patients have exactly what I'm experiencing, while others describe something totally different. With doctors already questioning the authenticty of ME/CFS these vast differences in symptoms makes me question it as well.

I was diagnosed with ME/CFS about two years ago after returning to the United States from a deployment to Iraq. My symptoms vary widely and have changed over time, making me wonder if they are related or not.

Initially my symptoms included, problems sleeping, mono-like symptoms including fatigue, nausea, sore throat, vertigo, sensitivity to heat. I appear to be more sensitive to infection. A few months later I began getting headaches that felt like a sharp pain over my left eye, then my right eye. Now the headaches just feel like a tingling sensation around the top back portion of my head.

I've experienced a lot of sleep issues with diagnoses including perdioic limb movement disorder and idiopathic hypersomnia. My coordination has decreased, I've begun to experience concentration issues, memory problems and chest pain (diagnosed as idiopathic tachycardia episodes). There is ringing in my ears, but if anything my hearing exam says my hearing has gotten better not worse.

I no longer digest certain foods, and some times experience stomach pain. My menstrual cycles are now 35-55 days apart with severe cramps. I have developed hemrophagic cysts on my ovaries (not sure if related). My eyesight has gotten really blurry and sensitive to light, but my optometrist says everything is fine.

More recently I've begun to get muscle twitches/spasms and body tremors. My weight also fluctates 20lbs each way with no change in diet/exercise.

I've seen a wide variety of specialist and everything they find is idiopathic (unknown cause). My symptoms aren't as severe as a lot of the ones I've heard mentioned, but it also makes me feel like no one believes I'm sick. I'm sure everyone has posted suggestions and opinions in this forum, but as you can imagine I am too tired to read through each of them and find out what applies to me. My opinion is that I need to be tested for POTS, but my doctors don't even seem concerned with trying to figure out the cause of all my symptoms or trying anything to help. So if anyone has any suggestions I'd greatly appreciate it.

I think it is a good idea for everyone with ME to get tested for POTS - but 90 percne t of doctors know nothing about it

you might ask around for e that does

thy these 2 fb gropus to find a POTS - knowledgeable doctor

good luck

good North American Doctors

https://www.facebook.com/groups/1438285386415297/

good Australian Doctors

https://www.facebook.com/groups/287952358017187/
ALly