So sick and frustrated - I still refuse to commit suicide but it is looking like my only option

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lowbrainpower
New Member


Date Joined Mar 2013
Total Posts : 6
   Posted 3/19/2013 10:52 PM (GMT -6)   
Hello everyone.

My condition has ruined my life. I won't bore you with the details, but let us just say that I am in eternal hell. I am now posting in online forums in hopes of reaching someone that may be able to help, since no Dr. has been able to.

I am 24 years old. For the past 4 years my symptoms have been getting steadily worse. Within this past year my symptoms have become unbearable and are now present 24/7 with no relief whatsoever.

My symptoms are as follows:
Chronic daily pain
Brain fog aka. Cognitive Dysfunction (memory loss, inability to focus and concentrate, trouble reading and comprehending, etc.)
Severe fatigue
Severe head pressure that never goes away
Dizziness (not vertigo) and tinnitus
Unrefreshing sleep
Dull sensory perception
Chronic sinus and nasal inflammation

Symptoms vary throughout the day, yet are always there, and are usually worsened by the following:
Eating anything
Drinking anything (even water)
Standing up (better when lying down)
Waking up in the morning
Ejaculation
Different head positions
Heat

I have had MRIs, MRVs, EEGs, CT scans, blood tests, the works. Everything comes up normal.

I have tried over a dozen migraine medications and none have helped. I do not believe this is a migraine or a headache, since I have had both since I was a child. Migraines will knock me out for 3 days, with visual disturbances, and are treatable with over the counter anti-inflammatory drugs if I catch it within 30 minutes of onset of visual aura. Headaches are also treated with over the counter pain medication.

This is something different! It feels as if my brain is being blocked. I am unable to think straight and feel as if I'm in a dream land 24/7.

There are only 2 things that help:
Fasting (no water and no food) for 48 hours.
High doses of anti-inflammatory drugs (which are not sustainable for obvious health reasons).

I have just had a lumbar puncture and am awaiting the results of the culture and pressure readings. During the procedure the Dr. said my pressure was 22, and was slightly high. I also noticed complete relief of all symptoms for 2 hours after the lumbar puncture, beginning when he first stuck the needle in my back and began draining some of the fluid for testing.

The headache and other symptoms have gotten progressively worse since the lumbar puncture, yet I am unsure if they are a continuation of my previous symptoms or something different entirely.

My Neuro wants to do a blood patch because he says I am now possibly having a CSF leak. If I am leaking, however, why did the lumbar puncture alleviate my headache? Should I not be on Diamox to lower my CSF pressure, if draining the CSF fluid was what alleviated my headache in the first place? Is my headache now a buildup of pressure and not a leak?

I do not want to get a blood patch until I know that is the right move. My Neuro seems to be doing things without having all the necessary data, which I unfortunately do not always give him because I am confused most of the time and unaware of my surroundings. I try to tell him things to the best of my knowledge but can no longer fight for myself and am now looking for answers online.

I should also mention that in the past, the only thing that has helped me is Zithromax. I had 2 days of relief while on 250mg a day, but symptoms returned 2 days after my Z-pack dose was terminated.

Any thoughts, ideas, comments would be more than welcome. I have undergone dozens of tests of different types and everything has come back normal, stating that I am an otherwise healthy 24 year old male. The only other idea I have is cluster headaches, since my pressure in the morning seems to start at 10:38 every morning. If I wake up before this time I often feel fine lying in bed, however if I wake up after this time I wake up in pain.

Thank you for your consideration.

glissandimum
New Member


Date Joined Mar 2013
Total Posts : 4
   Posted 3/20/2013 12:08 AM (GMT -6)   
To lowbrainpower - Sorry, but I likely won't be brief, bear with me! -
I have had a lot of the symptomatology you describe, so you're not alone. I know you've likely had a lot of tests done, etc. so try not to immediate dismiss what I say here, please - I work in medicine (in surgery) and can tell you that medical testing is not foolproof, medicine is and will always be  learning(at least in our lifetimes). Lots of the conditions we recognize now were dismissed/misdiagnosed  just a few years ago, like lupus, fibromyalgia, autism; the rule had always been, if you can't explain it, then it isn't! Slowly that philosophy is starting to erode, as physicians finally admit there's a lot we don't know. The body is completely interconnected, often in ways we cannot explain. So when someone tells you your symptoms have nothing to do with your "condition," don't just accept that! If you're feeling it, then it's real.Just because we don't have a fast answer, doesn't mean there isn't one or it isn't real...we just haven't figured it out yet.
 
That being said, I have to tell you that a lot of the symptoms you described (migraine syndrome, unable to eat/drink, Chronic daily pain
Brain fog, Cognitive Dysfunction (memory loss, inability to focus and concentrate, trouble reading and comprehending, etc.),Severe fatigue
Severe head pressure that never goes away,Dizziness (not vertigo) and tinnitus,Unrefreshing sleep,Dull sensory perception,Chronic sinus and nasal inflammation) are those I routinely experienced prior to going to a gluten-free diet. Yes I know you probably had a colonoscopy &/or blood work to rule out celiac, but I am referring you to the Celiac Foundation website and its director, Dr. Fasano. Celiac and intolerance are not defined like most doctors think - the research is VERY current and ongoing, and most doctors do not read this stuff daily(it's a lot to keep up with, believe me, and for docs who do not deal with a specific topic on a daily basis, they rely on what they learned in med school or from a lecture or pharmaceutical rep). That's why they specialize, right? 
 
Seriously, please start with that site and educate yourself on the topic. It is involved, but once you start to understand, you will be able to see how it is impacting your life. For instance, why would even drinking water sicken you? Because your gut is so very inflamed!  Please note: The gluten sensitivity blood test is not definitive, there are many false positives/ negatives, and in someone who isn't eating regularly, the likelihood of a false negative is considerable. Also, colonoscopy may not detect the telltale signs of erosion, because it may be confined to one small area that the scope cannot reach...many people are totally asymptomatic or have conflicting symptoms, at least in the "classical" sense...many docs/pathologists are not familiar with the new tissue classifications signifying intolerance...gluten is hidden in places you wouldn't suspect, like the glue used on postage stamps, so the chances of contamination are high...we don't yet know how extreme the damage can be, or how diverse the symptomatology may actually be. We do know that it is the second largest event (second only to lactose intolerance - nut allergies are a far distant third place by comparison and it is estimated by some that gluten intolerance worldwide could be as high as 50% of the population). Given that everything in the body is somehow connected (no body system works in strict independence), it goes to follow that what is impacting your gut and therefore your immune system, is impacting your entire body. So many posts here describe IBS (a typical gluten intolerance indicator), Crohn's, etc.  These are symptoms, actually, and so medicine treats just these rather than identify the real culprit. Consider - women diagnosed with endometriosis are placed on a gluten free diet, and experience relief. Think of the mechanisms involved there. When you learn a bit more about the cellular exchange that happens in your gut, you'll understand what I am getting at, and some of what you are experiencing may start to make sense. The site I mentioned breaks it down to layman's terms.
 
Not to second guess your neuro guy, but unless you have an identifiable leak, personally, I would opt out of the blood patch, at least until further testing. Don't forget - every procedure has risks! Docs themselves tend to forget/overlook that, given the volume of procedures they often do, and you don't want to fall into the pattern of "Let's try-" because they earnestly want to make you better but don't necessarily have an answer (kind of like when things go wrong with your car, and you start replacing parts bc maybe it's the alternator, maybe the battery, maybe the wires, the rotor...maybe you manage to hit on it, maybe not). Make sure you understand what the objective is, why they justify it, and be satisfied that all  your questions are answered. Do start carrying around a notepad, and write everything! Thoughts & questions & emotions that come to mind; what & when you eat and how you feel before, during and after; bowel habits (yeah, IK, yucky!) including appearance; symptoms, time of day, activity at that time; eating & sleeping patterns, anything. Then you can start to sort stuff out, like perhaps stress is causing tension headache (just bc you have migraines doesn't mean you can't get tension headaches!) or muscle stiffness, etc. And try to have someone come with you to your doc visits, preferably someone who is not afraid to ask questions or make comments that may be potentially useful, like noticing you reacting a certain way to something you ate (symptoms you might not notice, like your coloring).
 
Okay, this was very long, and if you actually got to the end, congrats!! You have a lot of stamina, lol!  Sorry for the length, hope it helps to know you are not alone and there are places to start looking for better answers. Best of luck - stay in touch!  wink
 
 

 

glissandimum
New Member


Date Joined Mar 2013
Total Posts : 4
   Posted 3/20/2013 12:15 AM (GMT -6)   
Sorry, me again -
(Briefly) I have heard patients often remark on lessening of headache symptoms post CSF drain/ spinal tap...that's more likely a reaction to the physical event than a symptom of an underlying condition, or at least, so the neuro honchos tell me. I'd be wondering why they suddenly think I have a leak...

lowbrainpower
New Member


Date Joined Mar 2013
Total Posts : 6
   Posted 3/20/2013 4:10 AM (GMT -6)   
I am honored that you took the time to register on this forum just to answer my question, and yes, I did make it to the end.

Maybe I am pulling conclusions out of my ass, but is your username a play on words for Chrysanthemum? It's been a long day...starting to hallucinate.

It's funny that you mention gluten because I have been tested for celiac as well as gluten intolerance in the past. Celiac came up negative but blood tests have shown me that I have a high antibody count to gluten, wheat, barley, rye, corn, and numerous others. Throw dairy, various fruits and vegetables, and nuts into the mix, and I literally can't eat anything but lettuce. God must hate me.

I went completely gluten free for a few months but after receiving no relief in symptoms ended up giving up. I now know that cross contamination, other trigger foods, inflamed gut, etc. probably also had something to do with it, just as you have stated.

I haven't gone to that website yet but will do so tomorrow when I am thinking more clearly. I wanted to post something tonight in case you stop following this website and do not see my thank you post.

One question I have for you is: how long did it take for you to get better?

I understand this is highly variable and is dependent on amount of damage, ability to heal, etc. but I have gotten statements such as 1 month to 6 years. I don't want to go down the path of hope only to be shot down yet again, and told it will take another couple of years to get better, only to spend more time and find out I have been having repeated strokes or something.

The fasting is a big clue, as is the anti-inflammatory drugs. I didn't realize that water and an inflamed gut don't mix well, which now makes sense to me. I thought maybe it had something to do with my trigeminal nerve, vestibular nerve, or countless other things that may have been causing symptoms in my head, stemming from my gut.

One thing that I AM certain of is gut dysfunction. I should have mentioned that in the symptom list, but it has become so common and is now a way of life. Thank you for pointing this out as it is a friendly reminder that I have to go on yet another elimination diet.

For the life of me I can't figure out why this happened, but perhaps that website you mentioned will go over it in more detail. I just have to fast for 48 hours so I can understand what it's saying!

Talk to you soon,

-LBP

Lazmos
New Member


Date Joined Mar 2013
Total Posts : 6
   Posted 3/20/2013 9:32 AM (GMT -6)   
Lowbrainpower,
 
I agree with glissandimum and although I'm not a healthcare professional, I've been in their care for many years with the symptoms you describe.  At 14 I had my first migraine, was tested for candida (positive) and told to stay clear of peanuts, red wine & aged cheeses.  I had several migraines throughout the years, but they only lasted 1- 3 days and I would have to stay in a dark room until it passed.  Then at the age of 21, I was in an auto accident which caused soft tissue damage, which caused swelling in the cervical spine(C2-6), which lead to chronic, severe migraines as well as unrelenting, severe neck, back pain and problems with digestion.......so on and so forth.  I suffered, yet continued to seek treatment that would restore my health and life for 15 years.  Disabled and feeling desparate I was open for every new treatment that came around the bend and with the help of a dedicated Dr. participated in many (botox, prolotherapy, all the modalities avail.,and many others.......to no prevail. 
 
Then, in 2001 I made the decision to take my health my priority - Already a vegetarian, I eliminated all wheats, sugar, and aged anything, started taking Chlorella(algea) and in 1 1/2 months things began to change..........I woke up, went to the kitchen to make my morning smoothie, then suddenly realized......I have no headache, the first time in 16 yrs.........I knew I was on to something.  I continued to seek new treatments to help my neck/head issues and found Atlas Orthogonal Procedure, which in conjunction with my diet has changed my life, returned my health and surprised many doctors, family and friends alike.  **I did ask my docotrs opinion of the AOP and he suggested I give it a try.**
 
I was so ill and suffering with so much pain for such a long time and none of my doctors ever put one and one together.....the Candida was reaking havoc on my body.  Candida takes advantage of a compromised system and it was well on it's way to winning.........I stopped it in it's tracks and have continued to prosper, but I must stick to a strict diet and get AOP if needed(a couple times a year).  I hike,bike,backpack, xc ski, run, vacation, work, and enjoy all of life's simple pleasures........it is possible, I'm living proof!  
 
My best to you in your journey to wellness! 

greatunclebill
Regular Member


Date Joined Oct 2012
Total Posts : 144
   Posted 3/20/2013 1:58 PM (GMT -6)   
my experience is to beware of neurologists. if you do see one, see an older one.

have you had a sleep study where you were tested for sleep apnea and restless leg? alot of your symptoms point that way.

i also learned the hard way that when the doctors keep saying "everything is normal, you look good on paper", that it's time to look at anxiety. ask your doc if you can take a test drive of some anti-anxiety drugs to see if they help.
gout, sleep apnea, asthma, copd, high BP & cholesterol, Gerd, light headedness, muscle weakness.

USAF MSgt (E-7) Retired
1968-1990

jd33
New Member


Date Joined Mar 2013
Total Posts : 2
   Posted 3/20/2013 8:08 PM (GMT -6)   
Wow that is serious and I hope you do not take your life. I was in thesame boat. I was struck in the head with a steel bat. I have had such bad migraines and symptoms similar to you. I dealt with a headache non stop for 20 years. My left eye would go blind for like a minute and come back. I was hospitalized with a severe migraine for 6 days and the usual stuff tests tests and tests. Well the injury also cause me to have a herniated disc in my neck sothey chalked it up to that as the cause. Well I went for my follow up after the hospital with my neurologist and they accidentally scheduled me with a PA. She was not happy because a post hospital visit is supposed to be with my primary nuero. So she said screw it and set me up for like 10 different tests. And a few were directed to the vestibular area. And well it turns out I have a severe Vestibular disorder and it all came together all my symptoms I was having had a name. Look up vestibular disorders and you will see a link to VEDA. It is a great tool and it may shine some light on your symptoms. I also have tmj and occipital neuralgia. This whole thing was totally misdiagnosed and a pissed off PA is the one who got me the answers. My neuro was a butt bleep but I found some great docs from the website. I am chronic and not curable but they can manage the pain and symptoms. You never know. I hope this helps. Sorry so long. I really do think the PA saved my life.

jd33
New Member


Date Joined Mar 2013
Total Posts : 2
   Posted 3/20/2013 8:23 PM (GMT -6)   
Also I tried accupunture and sacralcranio therapy helps me tremedously. Its a kinda psuedoscience but I can tell you it helped me so much I did not have to take my meds for a week or 2. I went cause my aunt told me she loves it so I did it to please her and I was so shocked. Me and the therapist have a connection now that is uncanny. She calls my aunt to ask her to call and make sure I'm ok and sure enough its when I'm stressed or something happened bad to me.

glissandimum
New Member


Date Joined Mar 2013
Total Posts : 4
   Posted 3/22/2013 12:07 AM (GMT -6)   
Hello again lowbrainpower and others....if u tested positive for gluten antibodies N any of its cousins (barley , rye etc.), then u r gluten intolerant. It's a pyramid, with celiac being the top of the peak (reflecting a relatively small percent of the population) and the myriad degrees or amount of intolerance forming the steep sides (ranging from highly intolerant up near the peak, thru moderately intolerant in the middle to slightly intolerant, which is a large part of the population, at the base). Make sense? Some people can tolerate a little, some none, some can tolerate more. It is noteworthy that u naturally become gluten intolerant as u age. Ever notice the vicious cycle in nursing homes? A pAtient is constipated, they give them laxatives, now they have diarrhea, give them....and on and on it goes. Smarter places move to a gluten free diet, and show big improvements.Plus a lot of meds may /may not themselves cause these same sx, but may in fact have gluten content, since it is jsed as a binder. Essentially, u hv an amount (ranging from none to some to lots) ur physiology can handle, and everyone is different. An elimination diet is useful,, but by definition of what I hv presented here, u r intolerant. When I went gf, I had migraines for over 30yrs. The docs often say u know the difference in 30 days...idk... I realized about 2months in that I hadn't had a heAdache (unheard of for me!)since I started....my daughter suddenly began to
gain weight (she was soo small, she wasn't even on the growth chart anymore since - surprise, surprise - I stopped breastfeeding at 13 mos). In fact, she gained
a foot in height in less than 6 months (not yet in puberty either). I began feeling lots better fromthen , and realized that I was also lactose I intoleranant to amoderate degree. Yogurt is a huge no- no for me, I hv allergies to red onion and all goat milk products (I carry an epi pen), shellfish, not sure what else. Certain meds too, like decongestants n antihistamines, which is unfortunate. Remember that gluten intolerance is an autoimmune issue, and more often than not, u usually hv more than just 1.

U must commit to a gf diet if ur intolerant. Not doing so links u to other issues, and there is a known cancer link. It is not that difficult, really it is not! Lots of veges n fruits. Meats. Eggs. Make ur own bread (I cant stand the shelf stAble stuff!). U will find u bcome healthier for 2 reasons: no gluten irritating u, n an all around better diet. Remember: the closer to the earth, n therefore less processed, something is, the better it is for u.

It will take time for ur gut to heal. In my case, I felt bettdr relatively soon, but noticed a kind of 'anniversary' at about a year when I felt remarkably better, and more profoundly about 18 months post gf diet. It took time to do all that damage; the surface tissue seems to start to heal rapidly, but like a scab, the deeper layers need time n if u break that scab open, it has to heal again.that's why u hv to commit, and make th conscious choice that these changes are permanent n for the benefit of ur healing.

To those others who posted, my thanks, will try towrite more tomorrow bc u raise interesting points. Sorry for the typos, am on my phone. And yes, glissandimum is a ki d of ay on words. I am a harpist, and glissandi r ornamentations we harpists employ, and chrysanthemums R just about my favorite flower, lol. Have a good night.
y, but

faithfuljourney
New Member


Date Joined Jun 2010
Total Posts : 2
   Posted 3/22/2013 5:55 AM (GMT -6)   
If you haven't tried this yet....please pray to God about your needs.
 
I use many combination therapies recommended by doctors but the peace and relief I receive from the One who made me...blows all of that out of the water!
 
"But he was pierced for our transgressions, he was crushed for our iniquities;the punishment that brought us peace was upon him, and by his wounds we are healed." Isaiah 53:5
 
Yes...I still have pain but in my worst moments, there is a peace and then pain release when I just give it all to Him to deal with. If you don't get what I'm talking about, I know it sounds crazy but He is ready and waiting to take your emotional pain away,which in turn relieves the physical.
 
Seems like you are out of options, so it wont hurt to try, right? :)
 
 
 
 

Lazmos
New Member


Date Joined Mar 2013
Total Posts : 6
   Posted 3/22/2013 9:29 AM (GMT -6)   
Lowbrainpower,
 
We're all expressing our empathy and concern for you as you reach out for help.  As you can tell from the replies, there are many possiblilities, but a change in diet and a way to cope with the stresses of chronic pain and debilitation are right up there at the foremost, so please talk with your doctor(hopefully he/she are open to holistic treatments, as well) and start a cleanse, diet change(strict at first), stress relief(mine was walking).  This regimen is good for all of us and a good foundation.
 
Because I have Candida, I must stay away from all of the high sugar fruits nono   as well(berries, Grannysmith apples, grapefuit are all ok) , but the health benefits are SO WORTH IT!  You are what you eat and if your body has allergies/intolerance to certain foods, or can't process them properly......they reak havoc.  This is something we can all do for ourselves, something we can control.  There is so much which is out of our control, but we must implement all our sources and do all we can for ourselves, if we want to be healthy! yeah
 
 
My best to you,
Lazmos

xrunnerx08
Regular Member


Date Joined Aug 2012
Total Posts : 91
   Posted 3/22/2013 9:36 AM (GMT -6)   
You need to be tested by an LLMD (Lyme Literate Medical Doctor) for LYME and co-infections!! I have all your symptoms and the lumbar puncture helped relieve the pressure temporarily. I went to every doctor imaginable. It took a year until I shelled out the money to see the doctor and my tests came back positive. I have been in treatment 6 months and am seeing improvement. Also, did you get the Gardasil vaccine before symptoms started? Just curious.

I would bet all the money I have that 50% or more of the people on this forum are infected with Lyme and dont know it because either their doctors tell them they are negative because they dont meet the CDC's required 5 bands to be considered positive or they dont associate headaches with Lyme and only think of Lyme as having sore joints and ligaments (which is so so far from the truth).

If you have one specific band come back positive, you have been exposed to the Lyme bacterium. There are many many different strains of Lyme (over 100+), which is another reason why testing is so inaccurate.

As you said, Zithromax helped you a lot. THIS makes it even more obvious you have a bacterial infection, most likely Lyme.

Going gluten, soy, sugar, and dairy free (maybe even caffeine) has helped me and has lessened my symptoms, but it is definitely NOT a cure. The Lyme creates an autoimmune response in our systems and gluten wreaks havoc.

My last suggestion would be getting colon hydrotherapy to cleanse your cut. 70% of our immunity is in out gut and there is a brain-gut connection. I have had it done twice and it greatly reduced my headaches.

If you decide to take my advice and see an LLMD, while you are waiting, take Vitamin D3, high dose vitamin C, BIO-PURE Chlorella, and Samento, Pinella, and Banderol (herbals from Nutramedix) which target Lyme and cleanse the brain. These have helped me greatly. It is also very important to detox.

Please come to the flash.lymenet.org forum and join us.

Lazmos
New Member


Date Joined Mar 2013
Total Posts : 6
   Posted 3/22/2013 9:46 AM (GMT -6)   
Lowbrainpower,
 
xrunnerx08 may have a very legitimate suggestion - although I don't have lyme, my husband does, as well as several other co-infections, Candida, high mercury/lead.  He has many of the symptom which you describe and has been helped immensely with treatment from a Lyme specialist, cleanse, diet change.  We're both very active people, but these symptoms and illnesses can stop you in your tracks.  We now enjoy hiking, biking, trail running, canoeing, backpacking, xc skiing, ect.....all of which we couldn't do whilst so ill. 
 
 
 
 

lowbrainpower
New Member


Date Joined Mar 2013
Total Posts : 6
   Posted 3/27/2013 1:49 AM (GMT -6)   
Update:

Thank you to all who have replied. I have read every post several times and have taken all of your comments into consideration.

I have been tested for both Lyme AND mold. I was told that I have 1 positive band for Lyme, which is under the required 5 from the CDC and 2 from IgeneX to be positive. I have also tested positive for the following mycotoxins: ochratoxin, aflatoxin, and trichothecenes. I am doubtful if these are the cause since many can be picked up in food, the environment, etc. My mold/Lyme Dr. wants to start IV treatment for a possible mold + lyme infection, however he is charging me $15,000 for treatment! I don't know if my levels of mycotoxins match that of the average person, or if the average person has 1 band of positive Lyme and exibits no symptoms. I CANNOT AFFORD to spend $15,000 and have this treatment not work, however if it did work then the $15,000 and all of my life savings would be worth it, since I'm dead in the water without my health. I just need to make sure that this will work before hand and that mold and/or lyme is really causing all of my symptoms.

I'm having difficulty pinpointing the cause of many of my symptoms as well. For instance, I had 2 organic, unpeeled carrots 30 minutes ago and was fine after eating them. I just ate another carrot, the third one for tonight, and by the second bite began having severe fatigue + drugged like lethargy. Why did 2 carrots, 30 minutes ago, give me NO SYMPTOMS WHATSOEVER, however this carrot 30 minutes after is causing immediate poisoned/drugged-up symptoms.

I am positive food is a symptom causer but not sure why. Is it blood flow related? I have been tested for allergies and carrots are not on my list, so what gives?

Is this one of the symptoms of Lyme + mold? Am I supposed to have symptoms that come and go, with or without noticeable causes all the time, and make my life a living hell?

I have noticed that eating very low carb brings an end to most symptoms. I can't tell if this is because I'm not eating as much, the ketosis part of the diet (maybe I'm carb intolerant?), fasting much more, or several other things. I just can't see why eating would cause immediate reactions if I am infected with something such as lyme.

Thank you to all your help. I am anxiously awaiting replies on why carrots would make me feel drunk if I have no allergy to them, am on an antihistamine right now (10mg Zyrtec!), and they didn't bother me 30 minutes ago.

Thank you!

Lazmos
New Member


Date Joined Mar 2013
Total Posts : 6
   Posted 3/27/2013 6:42 AM (GMT -6)   
Lowbrainpower,

As I stated in earlier posts, it could be Candida. Carrots are a sugary vegetable, which I cannot tolerate, as well. Sugars, wheats(glutens), age and processed foods are all reactionary foods. You can be tested by an allergist.

Also, remember, you don't have to stick with the doctor that tested you and stated the $15,000 cost. You can find another LYME specialist to treat. You may be fortunate enough to find one that takes insurance! My husband has been treating for Lyme, 2 co-infections, high Mucury & Lead for over a year and is doing so much better. Many of his symptoms have disappeared, other have deminished greatly.

My best to you!
Lazmos

xrunnerx08
Regular Member


Date Joined Aug 2012
Total Posts : 91
   Posted 3/27/2013 2:40 PM (GMT -6)   
lowbrainpower, where did you get tested for the mold? Was it covered by insurance and do you know what the tests are called? Do you know the treatment that the doctor wants to do? Any info would be a great. Thanks

lowbrainpower
New Member


Date Joined Mar 2013
Total Posts : 6
   Posted 3/27/2013 4:05 PM (GMT -6)   
@Lazmos,
I thought it was Candida months ago and tried numerous therapies but none worked. I was on diflucan as well as a low-carb/low-sugar diet, yet would still get symptoms after eating things like meat and non-starchy vegetables, which had very little to no carbs/sugar at all. I'm going to try this again, but I can't understand why the diflucan didn't work, especially since I took it for over a month with no relief in symptoms.

I'm looking for another lyme doctor/mold doctor that takes insurance, which would be ideal. I know things like this make sense when you're healthy but while sick I sometimes look over the obvious because I can't tell my left hand from my right.

@xrunnerx08
I'm looking for the tests. I spent $850 on it (without insurance) and now can't find it! I'll post here when I do find it.

As for the treatment the doctor wants to do, it's an IV treatment of antifungals and antibiotics. He couldn't give me specific details so I was a little taken aback. I think I will look for another Lyme/mold doctor because I'm really getting desperate and spending $15,000 on something that may not work would not allow me to seek any other medical treatment due to low funds.

Thank you both for your help thus far.

glissandimum
New Member


Date Joined Mar 2013
Total Posts : 4
   Posted 3/27/2013 10:46 PM (GMT -6)   
Hello again, lowbrainpower! smilewinkgrin
 
My suspicion is that the lethargy etc. you experienced while snacking on a 3rd carrot has more to do with the antihistimine you took...your symptoms are known side effects.  When did you take it?  It  takes some time to be metabolized (depending on several factors, like how it was administered, stomach empty or not, type of coating on the pill, etc.), and if you had taken it on a fairly empty stomach, it might have dissolved very suddenly, giving you a fast effect, as opposed to a prolonged duration.  The 3rd carrot likely just coincided, timing-wise. (I can't take antihistimines, among other things - they make me itch, at minimum.  Yeah, IK - that's problematic in the case of anaphylaxis, but as they cause me anaphylactic sx, I have an Epi pen instead).
 
I can't stress enough that knowing your food sensitivities/ intolerances (not necessarily just the outright allergens) is likely key to improvement. You don't have to be "allergic" for something to trouble you, and it will take patience to pare things down to a manageable level. Keep educating yourself on food allergies. Keep trying to eat organics - remember, the closer the food is to the earth, the better (in other words, stay away from processed foods, foods that lots of hands or machines have participated in creating, questionable growing conditions, etc.). And when eating, be calm - believe that this food will nourish you and make you better.
 
with regard to your doctor, I have mixed feelings on the $15k testing. He may be trying to deter you, without running the risk of angering you, or may be genuine in his intent to research your problems.  You are the best judge of which applies. I would be suspicious (but I suppose I am by nature...) because if he feels that it is medically necessary testing, the likelihood is that all/most/some of the expense will be covered thru insurance.  I have seen insurance companies kick something back to the doctor, but if he pushes because medically he has a rationale for the tests, the companies generally relent, at least to some degree.  Testing is not foolproof, even when paid for at full price in cash.  Just a thought....

lowbrainpower
New Member


Date Joined Mar 2013
Total Posts : 6
   Posted 3/28/2013 2:17 PM (GMT -6)   
Thank you! I need to get these food issues under control. I will update with progress.

natnat123471
New Member


Date Joined Jun 2013
Total Posts : 2
   Posted 6/8/2013 12:23 AM (GMT -6)   
been there, done that , i hope you went and got the blood patch done. it was my god send. i'm finding just about everyone on this site has never gotten relief. i think its all about big farmas profit, and the crap food we eat. lets face it. its cheap to eat crap food. its so hard to stop drinking soda, diet soda ect. corn syrup is in everything. the food companies are killing us slowly. unless you can buy organic foods its almost impossible to recover from all the chemical in the processed foods.i think we are the tip of the ice berg that's slowly melting. what's it going to be like in 20 or 30 years. and if i hear one more person tell me to exercise. i'm gonna kick them in the head. if i didn't work all day without a break. running a store all day long. working by myself. maybe i could. as far as suicide goes. i believe in reincarnation. do you really want to have to re-live this over again. if you didnt get it the first time around. you have to do it all over again. no thanks.

Jesus ❤️
Regular Member


Date Joined May 2013
Total Posts : 35
   Posted 6/9/2013 5:59 AM (GMT -6)   
Dear Lowbrainpower,
After a lumbar puncture your pain can increase due to a CSF leak.
These shocking headaches are called low pressure headaches.
If your neuro wants to do a blind blood patch do it.
I had a CSF leak which many stupid neurologists ignore for nearly 2 years.
The low pressure CSF pushed down on my brain.
My brain & brainstem were herniated & now have substantial disabilities.
GET BLIND BLOOD PATCH DONE!
I don't mean to scare you but I would never want any living soul to go though the hell I've been & still going through.
Please take care.
Angel99

asopher
New Member


Date Joined Apr 2013
Total Posts : 5
   Posted 6/13/2013 4:22 PM (GMT -6)   
Hi Everyone! Happy thursday to you all! : )

It pains me to see people going through such hard times, I'm sorry to hear youre suffering so much : ( My friend Karlie had migraines for years too but hasn't had one in about 3 years, off all medications and everything. I'd love for the chance to share her story with you and see if it could do anything for you : ) shoot me an email, take care and many blessings!

Alan
asopher@gmail.com
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