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Old 03-17-2009, 08:03 PM   #1
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Desperately looking for a diagnosis (Shortened)

My wife has been sick on and off for years now and we are trying to figure out what is wrong with her. I am looking for possible causes and/or a recommended specialist that matches these symptoms. Nothing came up in the typical blood work done at a physical.

In short my wife experiences the following in episodes.
  • Fatigue
  • Weakness
  • Muscle Pain
  • Headaches
  • Numbness in Hands and Feet
  • Sensitive to Temperature
  • Sensitive to pressure
  • Lack of coordination
  • Confusion/dizziness

Misc info:

I should also mention that she has ongoing digestive issues. She can't eat processed wheat. She can, however, eat 100% whole grain wheat without a problem. Also can't digest heavy oils: primrose, flax and sesame. She believes she does well on meat.

She has poor circulation and hormonal/menstrual problems as well.

Don't know if this is a symptom or not but she is a low body weight for her family. All the rest of her immediate family is overweight. Could simply be difference in diet but my wife eats a lot for her size. She needs to eat every 2.5 hours in order to keep her energy up.

What it's not:
  • Lyme
  • Lupus
  • Arthritis
  • Thyroid
  • Fibromialgia (Not a real disease)
  • Clean MRI (Draw your own conclusions)
  • Anemia
  • Vit D Deficiency
  • A Tick Born Illness

Her detailed medical history:

winter 1997 (12 years old) extreme pain, mostly in my joints, but it would radiate throughout my muscles. Weird weaknesses, couldn’t open a jar or twist or squeeze anything very hard. At the time I blames this on muscle atrophy from being immobilized due to the pain. I barely got off the coach for months. At one point the pain was so bad in my hands that I could not grip a pencil to write. No rashes, redness or swelling around joints, tests showed no inflammation. my pediatrician tested me for Lyme, lupus, arthritis, anemia, thyroid and about a billion other blood tests I don't remember. Sent to multiple specialists including Dr. Steer (who discovered Lyme) and an arthritis Dr who was a jerk and said my pain was from immobility, which makes no sense. the immobility was a result of the pain. I was previously very active in gymnastics, which I had to quit because of the problems with my joints, wrists in particular. About a billion tests later, everything cam back perfect and they could not find anything wrong with me. After months of this mysterious pain, it went away as mysterious as it had come and I was sent to PT to regain muscle from the time I spent on the couch.

bad headaches, particularly painful behind my eyes. At the time I thought this was from excessive reading. I was reading about 500 pages per day of novels since I couldn’t get off the couch. I'm not sure I ever mentioned this to my pediatrician because I did not think it was relevant. The headaches also mysteriously went away; I don't remember how exactly the headaches lined up with the pain and weakness, but they did overlap and seemed to go away together.

Dec 1998 – Early 1999 (13 years old) repeat of the previous winter. Everything the same, and again, no helpful tests or diagnosis.

late spring/early winter 2004 repeat of the same pain ( I don't remember if I was getting the same headaches and eye pain this time) lots of weakness again. my GP, now a different Dr than the pediatrician, did a lot of the same tests: Lyme, lupus, arthritis, thyroid, anemia etc… everything came back perfect again....pain relievers again don't help, but this time they try muscle relaxants and that stops the pain enough to help me sleep at night....saw the same jerk of an arthritis specialist who again said it was from immobility and diagnoses me with "fibromyalgia" and send me to PT again.

in hindsight, again not realizing it was relevant. I was an absolute klutz during this time. I felt like it there was a glass of water within 10 feet of my I would find a way to knock it over. I didn't realize this symptom was consistent with every time I had the pain, except when my husband pointed it out that he remembered this from the time I was 18, and that I am doing this again now. it's definitely perfectly in line with when I am in pain, but the klutzy/discordination seems to start first, before the pain.

2006-present lots of headaches the past couple of years, I have not paid enough attention to when and what types of headaches, but I feel like I always have some sort of headache, it just varies in severity and type.

lots of exhaustion. I haven't; felt well rested once in the past 3 years, no matter how much I sleep and I do not feel right. I've been through lot the past 3 years and I am not sure what is and isn't relevant in regards to a diagnosis. Childbirth, with lots of blood lost resulting in anemia, recovered from the anemia quickly, then kidney issues from not chewing red meat well enough, then a miscarriage, then who knows what else between the stress of life.

I am prone to a lot of dizziness, orientation issues and motion sickness. I've never been able to be a passenger in car. I get sea sick and motion sick on planes too.

Fall 2008 allergy testing to try to figure out the headaches; nothing conclusive. I have very mild allergies to a few different foods witch I cut out for a period of time and found no difference.

beginning of October 2008 I started PT for my back/neck and hip (old cheerleading injuries, mostly bad posture at work… my neck kept getting out of alignment causing bad headaches, and I had chronic low back pain and occasional sciatica. The personal training (authentic Pilates) was awesome. I did private sessions for one hour three times per week for those 3 months. My posture got so much better. No low back pain after a couple of weeks, and after 6 weeks my neck and shoulders were doing awesome ! No more of that kind of headache that I get when my neck is out of alignment! My whole body felt different, stronger and aligned. I was progressing quickly and my trainer was really impressed by my improvements.

early January I suddenly start becoming a complete klutz!

I start mixing things up a work a lot. Stuff that I never do! I'll be looking at a day 2 days out in the appointment book and I'll be saying "tomorrow" to the client, but booking them on the wrong day. I did this half a dozen times in the course of a week or so, and I just don't do stuff like that, except on rare, rare occasion if I am short staffed, have a really extra busy day and get a little bit overloaded, but this has been happening for no reason lately. I'm in my slow season, I am not overwhelmed and I keep doing it. I feel like I've lost my brain. I am mixing up words and sounding like an idiot.

Jan 13th I go to my GP for my physical, I am really not feeling right this morning. Just climbing the stairs to his office I feel a creepy, out-of-place exhaustion. They do a bunch of extra blood work with my physical for the exhaustion- everything looks normal. Dr. Dorris, looking at the same blood work on 3/10/09 says notices that my lymphocytes were off, indicating I was fighting off infection… no one noticed that at my GP office, or at least never mentioned it to me. Thinks I should have been tested for mono

Friday Jan. 23 massage w/ a massage therapist I have not seen before (I do get regular massages, at least 1 per month, and when I started PT this fall, I've gone more frequently) After the massage It felt awful. I felt over stimulated and incredibly exhausted like I had just run a marathon or something.

Monday, Jan 26I am doing a Pilates class like I had been 3x a week for 3 months at this point, and towards the end of the hour I start feeling really weird. My muscles are really exhausted. After the class I felt like I had just done 10 hours of work instead of one. I'm really creaped out by this. I do home and rest. A couple hours later I am lying on my couch when I start getting painful muscle spasms through my whole lower body. The same pain I have gotten in the 3 previous episodes, but oddly, this time it's only in my lower body (I did feel in the class like I had worked out my lower body more than the rest, my legs felt particularly exhausted)

The next few days… For the next few days I am in miserable pain, now my entire body is spasming and I've got an overwhelming weakness. It's creepy. It feels like a wave comes over me and with it takes all of the power out of my muscles. I just feel weird.

I don't work at all for 4 days, and then when I do go back to work later in the week I can't handle much. I see one or two clients a day, working about 1/10th of what I would normally do in a day. I don't even feel like I can physically get through what I am doing, but I do it anyway, because I have to.
My headaches are getting worse with the muscle spasms. It's not like my usual headaches though. It's distinctly behind my eyes and hurts worse if I move my eyes. It hurts to read, and if I am too expressive with my eyes (like rolling my eyes when I am talking, or raise my eyebrows) it hurts even worse. When trying to sleep at night, I am trying to relax and my eyes are closed, it feels like my eyeballs are coming out of my head and there is a painful pulling being them.

I am always very cold and extremely sensitive to being exposed to cold. It often makes me ache, and it's definitely not good when I am having muscle spasms. Heat seems to ease the pain… yet I have an odd sensitivity to heat too. It seems the line between being cold and hot is very thin with me. If I am pain, a hot shower helps, but then I feel a different awful feeling afterwards. The heat of the shower is exhausting to me. it's like the heat takes all my energy away. my muscles feel creepy, again like I have run a marathon, or like all the life has been sucked out of my muscles.

I don't have my normal strength. I am having trouble gripping things and opening bottles. This comes and goes. Sometimes I feel like a wave of exhaustion comes over me, for no obvious reason

I notice a weird patch on top of my head is sensitive. When I brush my hair, adjust my ponytail or shampoo it, it's really sensitive in one particular area

Feb 3rd I was just playing with my cell phone one night when I felt a weird jump in my left tricep. It wasn't painful at all, but the muscle twitched and then my hand felt weird. It was like the creepy weak feeling I will get throughout my whole body sometime, but the feeling was just in the one hand, right after the twitch happened in that tricep. Then I tried to open my water bottle and I couldn't. My hand was useless. I could move it and control it, but there was no strength in it at all. I could not twist or squeeze with any strength. This went on for about 15 minutes, and then it seemed to be going away, but I didn't pay any more attention because I was going to bed at that time.
I was still feeling overall fatigued and tired all day, and I hadn't worked at all, but it was weird how extreme the weakness was in the one hand, while the other seemed to be pretty normal.

Wed Feb 4 My trainer is really surprised at how relaxed I am and how I do not seem to "hold stress in my body" I got a call from one of my employees while she was stretching my leg. My employee showed up late to work, and had irresponsibility locked herself out of the salon with a client there waiting for her appointment. I really wasn’t stressed about this. I just asked the logical questions, and figured out what I had to do to fix the situation, if I could, and where it was out of my control. I let go. I instructed my employee on how to handle to situation with the client and told her I would meet her there after my PT appointment... I mention this because my trainer said she was still stretching me and was amazed and how I relaxed right into her hand and did not let the situation affect my body. I've been told so many times that I have "fibromyalgia" and my pain is all due to stress, but it makes no sense to me. It seems to be completely unrelated to stressful, or non-stressful times in my life, and I am really not someone who gets overwhelmed or stressed and allows that to make me tense...

Wed Feb 5th
I was a afraid to work out after the weird experience last Monday, which seemed to trigger this bad episode of pain, and I am not feeling any better yet, so I was going to cancel my already scheduled appointment for Pilates for this morning, but I was afraid of becoming immobile, wondering if there was an validating to what the rude arthritis specialist had said when I was 18. She was definitely wrong about my pain be a result of immobility, but perhaps becoming immobile aiding in me getting worse... I was doing so well at this point with the Pilates, and I didn't want to get tight and go backwards. my trainer suggested I come in just for her to stretch me, so I did...I think the stretching is good, and I continued to see her about twice a week to just get stretched... something really weird happened while she was stretching me though. As she pulled my leg up to stretch my hamstring, I got an extreme burning/stinging type pain in one small (about a dime -sized) spot on my skin. It was not related to the muscle she was stretching and she did not touch me there. it was like my pant leg dragged across my skin and maybe snagged on a hair or something to trigger this pain. It was something I have never experienced before. It was extremely painful and went away after about a minute, unexplained.... never felt it again

Feb 5th, started menstruation painful spasms seemed to lessen significantly after day 1 of menstruation. I don’t know if that shows it was hormone related, or if it’s just a coincidence. I think also it might be related to the use of the herb "cramp bark" (virburnum opulus ) which is antispasmodic. I take it because of really bad uterine spasms that I tend to get on my period. I take it preventively now, starting at the very first start of menstruation.

Feb 12th my best friend dragged her fingernails across my knee and it was torture. It was over-stimulating and the weird sensation radiated from my legs for a minute or two after. I've noticed that the past few years I do go through periods where I am very sensitive to certain stimuli. Things that would usually tickle or tingle are a violating, torturous feeling, almost painful.
13-Feb less pain this week, lots of weird twitches and spasms though, and I am very, very exhausted

still knocking things over, and tripping and stuff… a lot
miss-speaking and mis-scheduling clients a lot. I loose my train of thought really easily. A lot of people are noticing and saying that I am just not myself.

Feb 25th took kava tonight (an herbal muscle relaxant) and for the first time in so long I can’t remember, I felt like my muscles were content. They felt relaxed and heavy like they were tired and sinking into my bed ready to sleep, instead of that creepy restless feeling. I slept for 13 hours. ( went to bed at 8pm, woke up at 10 pm hungry, ate something and was back asleep by 10:30, slept straight to 9:30 in the morning)

I still haven’t been working much and I need a nap every day
the days I do work, I have been working 1/2 days and taking lots of breaks between clients
I have been feeling a lot less pain, but very weak and tired

Feb 27th felt a lot better today, more capable, still not great though.

sat 2/28 worked a real, normal full day for the first time all month and I did really well with it. I thought for sure I would pay for it by re-triggering painful spasms in the evening, but no, I'm ok
felt fine for the next couple of days, but I was resting and keeping it easy on my days off


Sat 3/14 Felt good this morning and went to a Pilates class again. I am thrilled that I was able to do 2 days in a row. I feel strong, capable and in control of my muscles. It’s like the episode never happened. My trainer is also impressed at how well I did considering I wasn’t able to work out at all for a month and a half. My symptoms seem to have mysteriously gone away the same way they mysteriously came. (Besides the headaches and eye pains, still here, and still lousy

Last edited by unknownissue; 03-18-2009 at 10:26 AM. Reason: Shortened

 
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Old 03-18-2009, 06:48 PM   #2
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Re: Desperately looking for a diagnosis (Shortened)

In all honesty, after reading the extensive medical history, I don't see why the situation is so desperate. If anything, it sounds like there may be some autoimmune manifestations, possibly a minor Raynaud phenomena, but I'm leaning more towards hypochondriasis.

Last edited by pjs009; 03-18-2009 at 06:49 PM.

 
Old 03-18-2009, 07:23 PM   #3
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Re: Desperatly looking for I diagnosis

Does your wife take any sort of vitamins or herbal remedies? Has she seen an endocrinologist? The only ideas I could think of would be an Acid-Base Imbalance or maybe overuse/exposure to something such as herbs or supplements. Has she seen a specialist about her "digestive issues"? What you said doesn't make much sense to me. Does she eat a balanced diet? Perhaps a nutritionist could help her with that. Has she been evaluated by a mental health professional? Not that I am suggesting it is in her head, but many doctors will suggest that it is, especially if they are stumped. This way if nothing else, the idea of it being "all in her head" could be ruled out. Could it be enviormental? Maybe she is hypersensitive/allergic to something that she comes in contact with.
Good luck to you and your wife.

 
Old 03-19-2009, 01:53 AM   #4
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Re: Desperatly looking for I diagnosis

Has your wife been checked for M.S.? I don't think I saw that on your list?

JIll

 
Old 03-19-2009, 08:56 AM   #5
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Re: Desperatly looking for I diagnosis

Quote:
Originally Posted by jill60 View Post
Has your wife been checked for M.S.? I don't think I saw that on your list?

JIll
The Normal MRI apparently means she doesn't have MS.

 
Old 03-19-2009, 08:57 AM   #6
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Re: Desperately looking for a diagnosis (Shortened)

Quote:
Originally Posted by pjs009 View Post
In all honesty, after reading the extensive medical history, I don't see why the situation is so desperate. If anything, it sounds like there may be some autoimmune manifestations, possibly a minor Raynaud phenomena, but I'm leaning more towards hypochondriasis.
Well this has been going on for 12 years with no answers. It has greatly effected our lives. Desperate is a relative term but I though it made sense to use it. I will look into your suggestions. Thank you.

 
Old 03-19-2009, 09:05 AM   #7
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Re: Desperatly looking for I diagnosis

Quote:
Originally Posted by niknak77 View Post
Does your wife take any sort of vitamins or herbal remedies? Has she seen an endocrinologist? The only ideas I could think of would be an Acid-Base Imbalance or maybe overuse/exposure to something such as herbs or supplements. Has she seen a specialist about her "digestive issues"? What you said doesn't make much sense to me. Does she eat a balanced diet? Perhaps a nutritionist could help her with that. Has she been evaluated by a mental health professional? Not that I am suggesting it is in her head, but many doctors will suggest that it is, especially if they are stumped. This way if nothing else, the idea of it being "all in her head" could be ruled out. Could it be enviormental? Maybe she is hypersensitive/allergic to something that she comes in contact with.
Good luck to you and your wife.
She has taken herbal remedies in the past few months and vitamins over maybe the past 4 years. But this issue has been happening for the last 12 years on and off. Her environment has changed over that period of time in every way.

I will check to see if she has seen an endocrinologist.

She had a horrible diet growing up. She had a good diet now but it could be more diverse. She hasn't seen a mental health professional but if it was in her head then why would it come in episodes?

Again would an acid imbalance cause episodes instead of a gradual deterioration?

Thank you.

 
Old 03-19-2009, 09:10 AM   #8
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Re: Desperately looking for a diagnosis (Shortened)

What medications is she currently taking?

How much purified water does she drink per day?

 
Old 03-19-2009, 09:33 AM   #9
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Re: Desperatly looking for I diagnosis

There may not be one person who agrees with me on this, but I mean it in all due respect, for all of us who face long and difficult diagnosis's, and those of us who do live lives while affected with serious illness.

The one thing that comes to mind after going through the extensive personal records she has been keeping, is that she is fixated on being ill.

I don't mean to be offensive, or lack understanding...it's just that I have years of experience with a dear friend who has a very similar fixation with his medical history. We are a group of very close friends, and this man is not happy unless he is in pain, tired, sick, etc... I mean all day, everyday. While the rest of us (who have real medical issues, like stroke survivors, lung transplant survivors, kidney failure, heart attacks, blindness, etc.) laugh, and enjoy our lives, grateful for every day- this man wallows in self-absorption.

We are all part of an art club for the disabled that I started. We meet at his house, because he's too zonked on pain medication to drive. While we paint and color and glue and draw...he moans and groans and relives all of his medical issues. It is so sad.

It is an amazing phenomenon! I am not saying he is not experiencing these things, it's the attitude that seems to be the difference! Everybody hurts sometimes, everybody's eyes get tired, we all have days were we are klutzy, the weather affects all of us!

If she has been to so many doctor's, and had so many tests, over so many years-all negative...and the symptoms appear, and disappear... perhaps there is nothing wrong with her.

I would imagine she gets a great payoff from all this attention given to her when she produces this diary. It just reminds me of my friend, who lives with the same focus on his ill health.

I certainly mean no dis-respect, and I admire you for trying to get help for your wife. i wish you well.

 
Old 03-19-2009, 09:38 AM   #10
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Re: Desperately looking for a diagnosis (Shortened)

Quote:
Originally Posted by SoCalTraci View Post
What medications is she currently taking?

How much purified water does she drink per day?
She doesn't take any medications and we would like to keep it that way. We like to go natural as much as possible.

I don't know how much water she drinks but it is tap. Maybe 2 liters a day of she is good about it.

We think it could be hormonal. Her symptoms started when she was 12. I should also mention that she has small breasts (in contrast to most of her family). This could be because of her high metabolism. All of these things are controlled by hormones are they not?

Oh and she likely has endometriosis. I don't know how many of the symptoms you can attribute to that.

Last edited by unknownissue; 03-19-2009 at 09:39 AM.

 
Old 03-19-2009, 09:54 AM   #11
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Re: Desperatly looking for I diagnosis

Quote:
Originally Posted by writeleft View Post
There may not be one person who agrees with me on this, but I mean it in all due respect, for all of us who face long and difficult diagnosis's, and those of us who do live lives while affected with serious illness.

The one thing that comes to mind after going through the extensive personal records she has been keeping, is that she is fixated on being ill.

I don't mean to be offensive, or lack understanding...it's just that I have years of experience with a dear friend who has a very similar fixation with his medical history. We are a group of very close friends, and this man is not happy unless he is in pain, tired, sick, etc... I mean all day, everyday. While the rest of us (who have real medical issues, like stroke survivors, lung transplant survivors, kidney failure, heart attacks, blindness, etc.) laugh, and enjoy our lives, grateful for every day- this man wallows in self-absorption.

We are all part of an art club for the disabled that I started. We meet at his house, because he's too zonked on pain medication to drive. While we paint and color and glue and draw...he moans and groans and relives all of his medical issues. It is so sad.

It is an amazing phenomenon! I am not saying he is not experiencing these things, it's the attitude that seems to be the difference! Everybody hurts sometimes, everybody's eyes get tired, we all have days were we are klutzy, the weather affects all of us!

If she has been to so many doctor's, and had so many tests, over so many years-all negative...and the symptoms appear, and disappear... perhaps there is nothing wrong with her.

I would imagine she gets a great payoff from all this attention given to her when she produces this diary. It just reminds me of my friend, who lives with the same focus on his ill health.

I certainly mean no dis-respect, and I admire you for trying to get help for your wife. i wish you well.
Let me just say something about my wife's personality. She is a passionate and positive person. The history you see below was first done up maybe a month ago. She finally buckled down and looked though her medical history and compiled it together to make it easier for a doctor to diagnosis her.

She has been very frustrated with doctors and I can see why. I was at her last appointment and the doctor just gave her 3 prescriptions for the symptoms she was having. This was before the doctor even read the medical history and without giving an underlying reason for the symptoms.

The history below is, I believe, a rational response to years of frustration, pain and fatigue.

Her bad experience with doctors has for the most part pushed her to avoid figuring out her health issues. I recently insisted that we try and figure this out together.

I know my wife well and I don't believe at all this is just in her head or that she wants the attention.

My wife knows a nurse and she recommends she have the following tests done:

Full thyroid work-up
Full pituitary work-up
Chest x-ray to (view my lungs) sometimes I my lungs feel heavy
Toxology report, including heavy metals
Chemical screening (in particular nail products chemicals)
Asbestos screening for lungs and blood

Any other suggestions would be appreciated.

 
Old 03-19-2009, 10:30 AM   #12
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Re: Desperatly looking for I diagnosis

I certainly did not intend to insult you.

I hope you can forgive me, and rack this one up with the other wrong assumptions, accidentally made on the boards everyday. I goofed.

 
Old 03-19-2009, 10:40 AM   #13
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Re: Desperatly looking for I diagnosis

just tossing this out there, what about Celiacs ?

 
Old 03-19-2009, 10:47 AM   #14
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Re: Desperately looking for a diagnosis (Shortened)

With her taking no medications and seeming to drink enough water (1 gallon of purified would be better), then I have 1 recommendation that I'm sure you haven't tried. It's called the Incurables Program from Dr. Richard Schulze.(It's not a network marketing company.. you purchase directly from him and I don't get anything from it.) My husband has had dozen's of patients go through this program with seemingly bizarre unexplainable symptoms and it has worked wonders. Dr. Schulze has testimonials from terminal cancer patients going through this that have reversed their condition. It is basically a hard core, 30 day cleanse of your entire body... liver, kidney, bladder, intestines, gall bladder, etc. Nothing but raw fruits and veggies, juicing and cleansing for 30 days. My family has been using his products for 11 years and they are incredible. I only wish it was network marketing as I'd have made a fortune by now with all the people I refer to him. I would try this before doing anything else and before taking her in for any more tests or seeing any more doctors. This cleanse will be her full time job for 30 days as it is intense. Good luck.

Last edited by moderator2; 03-19-2009 at 10:50 AM. Reason: please do not post commercial websites

 
Old 03-19-2009, 01:26 PM   #15
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Re: Desperatly looking for I diagnosis

Most tests do not find Chronic Lyme disease. If you haven't used IgeneX lab for Lyme and coinfections, then you should do this immediately!! Go to an LLMD (Lyme Literate Medical Doctor), ILADS trained. The come-and-go symptoms, can be Lyme. Lyme affects the eyes too and you should see a Lyme-literate Ophthamologist. Lyme can affect areas of the brain. A CD-57 test through Lab Corp, Calif. is also a marker for Lyme, showing your level of natural killer cells.

Our LLMD also tested the 18 tenderpoints and diagnosed Fibromyalgia, which IS INDEED A REAL DISEASE that could be caused by trauma, chronic infections, etc.

A pain specialist can diagnose if you have CMP (Chronic Myofacial Pain) too.

Allergies and Sensitivities to temp., food, chemicals, plus imbalanced hormones (menstrual problems), neurological dysfunction, unrefreshed sleep & other sleep disorders, post-exertional malaise, difficulty digesting EFAs, etc-- it ALL goes along with the syndrome of Fibro, Lyme, coinfections, CFIDS/CFS, etc. Our LLMD used RedLab to diagnose CFIDS and SpectraCell lab to find related nutritional deficiencies. We used ZRT lab for hormone, adrenals, thyroid testing; saliva testing is good. Get tested for Celiac and allergies too.

Once you have been properly diagnosed, and if you
have Lyme, if you can possibly find a Lyme-literate natural doctor who uses BioMeridian Biofeedback, that is helpful to "hear your body" and heal with it.
Read & research. Let me know if I can be more help. My daughter has this!!

Last edited by Renae610; 03-19-2009 at 01:36 PM.

 
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