Aa
Can someone please try to diagnose me?
I am a 21 year old male from Scarsdale, NY
Past medical conditions- Severe allergies to dust, animals, ragweed, and mold. Took shots of gamma globulin for 6 hours a week when I was younger (5-6). When I was a baby I had surgery on my ears and needed tubes in them. In 7th grade I went through severe depression.
Note that before this occurred I was in the prime of my life, and the happiest i've ever been.
When I attended college at High Point University NC in 2010, I became extremely sick. I developed a horrible cough and assumed it was mono due to partying heavily on a weekly basis. When I got better a couple of weeks later i realized that my eyes looked tired and my head was not working to its full potential. Don't get me wrong, at this point I still had the ability to do and be anything I wanted to be with little holdback (maybe a 10% decrease in brain functionality due to fatigue). I thought nothing of this and believed like all of my prior sicknesses that time would heal it. Some days I was active, but I progressively had more and more “tired” days. About a month later, I was in Arizona because i transferred schools and was growing concerned about the fatigue that was worsening over time. At the time, I was into working out, I avoided alcohol and partying to help build muscle (organic protein and arginine were the only supplements i took). My muscles started becoming sore and weaker even when given a weeks rest. I assumed it was overtraining and gave lifting a week break.. this turned into a month because I was still sore. I then narrowed the fatigue down to a few possibilities, diabetes, poor sleep scheduling, and Chronic Fatigue Syndrome. I thought it was diabetes because food affected my mentality and I couldn't handle a lot of simple carbs. I took two blood tests at the school and even bought my own blood glucose monitor before I accepted that this wasn't the case. I thought it was due to my sleep schedule because I was going to bed at 4:30-5:00am each night and waking up around 2:00. I have fixed it and now wake up at 9:00am with a full 8 hours of sleep each night, no help. Finally, I thought it was CFS because I typed in my symptoms online and it was the most relevant search. I went to my doctor and he said although there is a slight possibility, a 19 year old male having CFS is extremely unlikely, especially a physically active one.
I came home from AZ and decided to not return to school the next year. I lost the ability to focus and became very sensitive to sickness, allergies, and looking at computer/TV screens. I worked in a dirty environment and noticed that my lower region was moist and thought I had hemorrhoids, went to the ER, tested negative, and left me once again clueless. Later that month (July) I was doing research and stumbled upon Lyme Disease, All the mental symptoms were there like the confusion and the memory issues, but I never had rings, never had neck stiffness, and my face wasn't numb. A week later the thought of Lyme came back up in the shower and I checked my body, there was a tick! It was old looking (grayish) and very small, unfortunately I was unaware that you are supposed to keep the tick and bring it to the doctor. I let it go and it went down the drain. I scheduled an emergency appointment and got a blood test, negative. Confused, I looked up how not all tests are accurate and Lyme tests are actually notorious for being inaccurate. I tried 3 more of them before giving up.
I was becoming depressed as time went by, my family thought it was all mental so I went to see a psychiatrist and was prescribed prozac. I certainly was happier, but even with a positive mind state I was still tired and my memory problems were getting worse. This carried on for about 8 months of me being content with my new self until I decided to fight it again and return to the real old me. I stopped taking prozac and was on the hunt again, tried eating only veggies, didn't work. Clearing our ducts for dust, didn't work. Acupuncture, nothing. Florida vacation, nope.
This carries on up until now, I am about to go to seattle to avoid ragweed and have clean air. I've recently talked with my doctor about the moist bottom region and he said that I probably have a bacterial infection, I bought medication (align) but I still get moist down there with little cottage cheese like specks when I eat sugar. I am currently on an extremely low simple carb diet with most of my food being organic. I still think that there is a chance of this being Lyme Disease, allergies, the infection, and that I might be allergic to EMF's because dealing with electricity and screens exhausts me fast and gives me a headache.
My current symptoms-
Fatigue
Memory Problems
Can not focus
Red eyes
Extreme allergies
EMF sensitivity
Weak muscles
Headaches
Thank you again for taking the time to read this, I hope to hear advice and appreciate your response.
Past medical conditions- Severe allergies to dust, animals, ragweed, and mold. Took shots of gamma globulin for 6 hours a week when I was younger (5-6). When I was a baby I had surgery on my ears and needed tubes in them. In 7th grade I went through severe depression.
Note that before this occurred I was in the prime of my life, and the happiest i've ever been.
When I attended college at High Point University NC in 2010, I became extremely sick. I developed a horrible cough and assumed it was mono due to partying heavily on a weekly basis. When I got better a couple of weeks later i realized that my eyes looked tired and my head was not working to its full potential. Don't get me wrong, at this point I still had the ability to do and be anything I wanted to be with little holdback (maybe a 10% decrease in brain functionality due to fatigue). I thought nothing of this and believed like all of my prior sicknesses that time would heal it. Some days I was active, but I progressively had more and more “tired” days. About a month later, I was in Arizona because i transferred schools and was growing concerned about the fatigue that was worsening over time. At the time, I was into working out, I avoided alcohol and partying to help build muscle (organic protein and arginine were the only supplements i took). My muscles started becoming sore and weaker even when given a weeks rest. I assumed it was overtraining and gave lifting a week break.. this turned into a month because I was still sore. I then narrowed the fatigue down to a few possibilities, diabetes, poor sleep scheduling, and Chronic Fatigue Syndrome. I thought it was diabetes because food affected my mentality and I couldn't handle a lot of simple carbs. I took two blood tests at the school and even bought my own blood glucose monitor before I accepted that this wasn't the case. I thought it was due to my sleep schedule because I was going to bed at 4:30-5:00am each night and waking up around 2:00. I have fixed it and now wake up at 9:00am with a full 8 hours of sleep each night, no help. Finally, I thought it was CFS because I typed in my symptoms online and it was the most relevant search. I went to my doctor and he said although there is a slight possibility, a 19 year old male having CFS is extremely unlikely, especially a physically active one.
I came home from AZ and decided to not return to school the next year. I lost the ability to focus and became very sensitive to sickness, allergies, and looking at computer/TV screens. I worked in a dirty environment and noticed that my lower region was moist and thought I had hemorrhoids, went to the ER, tested negative, and left me once again clueless. Later that month (July) I was doing research and stumbled upon Lyme Disease, All the mental symptoms were there like the confusion and the memory issues, but I never had rings, never had neck stiffness, and my face wasn't numb. A week later the thought of Lyme came back up in the shower and I checked my body, there was a tick! It was old looking (grayish) and very small, unfortunately I was unaware that you are supposed to keep the tick and bring it to the doctor. I let it go and it went down the drain. I scheduled an emergency appointment and got a blood test, negative. Confused, I looked up how not all tests are accurate and Lyme tests are actually notorious for being inaccurate. I tried 3 more of them before giving up.
I was becoming depressed as time went by, my family thought it was all mental so I went to see a psychiatrist and was prescribed prozac. I certainly was happier, but even with a positive mind state I was still tired and my memory problems were getting worse. This carried on for about 8 months of me being content with my new self until I decided to fight it again and return to the real old me. I stopped taking prozac and was on the hunt again, tried eating only veggies, didn't work. Clearing our ducts for dust, didn't work. Acupuncture, nothing. Florida vacation, nope.
This carries on up until now, I am about to go to seattle to avoid ragweed and have clean air. I've recently talked with my doctor about the moist bottom region and he said that I probably have a bacterial infection, I bought medication (align) but I still get moist down there with little cottage cheese like specks when I eat sugar. I am currently on an extremely low simple carb diet with most of my food being organic. I still think that there is a chance of this being Lyme Disease, allergies, the infection, and that I might be allergic to EMF's because dealing with electricity and screens exhausts me fast and gives me a headache.
My current symptoms-
Fatigue
Memory Problems
Can not focus
Red eyes
Extreme allergies
EMF sensitivity
Weak muscles
Headaches
Thank you again for taking the time to read this, I hope to hear advice and appreciate your response.
Best Answer
To put my two cents in, tick bites resulting in Lyme is becoming an epidemic in the US but is under reported because of all the problems Jackie and Rico mentioned.
My bite was over 20 years ago and I started getting sick and doing tests soon after. I got diagnosed with everything, CFS, EBV, Fibromyalgia, etc. However it wasn't until a crisis in my life 18 months ago that "woke the critters up" and I became extremely ill. Many folks don't know they were bit because like me, they never got a rash. For all I know, I could have been bitten more than once. I went through painful and unnecessary tests the past year, being diagnosed with MS, Lupus, Hashimotos and more. I have only been in treatment with an LLMD since March so I have a long way to go but I have high hopes to be cured eventually.
My bite was over 20 years ago and I started getting sick and doing tests soon after. I got diagnosed with everything, CFS, EBV, Fibromyalgia, etc. However it wasn't until a crisis in my life 18 months ago that "woke the critters up" and I became extremely ill. Many folks don't know they were bit because like me, they never got a rash. For all I know, I could have been bitten more than once. I went through painful and unnecessary tests the past year, being diagnosed with MS, Lupus, Hashimotos and more. I have only been in treatment with an LLMD since March so I have a long way to go but I have high hopes to be cured eventually.
@Robyn the poster mentioned CFS but we were discussing Lyme and CSF cerebral-spinal fluid findings and infection.
@Jackie it's interesting that Lyme is such a big concern given that it's spread by ticks and not very many people are bit by ticks in their lifetime. I was bit by a tick maybe 13 years ago when I had a dog and I used to take him to the local park to the dogs playground area. there were also sheep and cattle in the area with related shepherd dogs.
In conclusion, which were your symptoms at the time you started the treatment and how long did it take for the antibiotics to make them regress completely?
@Jackie it's interesting that Lyme is such a big concern given that it's spread by ticks and not very many people are bit by ticks in their lifetime. I was bit by a tick maybe 13 years ago when I had a dog and I used to take him to the local park to the dogs playground area. there were also sheep and cattle in the area with related shepherd dogs.
In conclusion, which were your symptoms at the time you started the treatment and how long did it take for the antibiotics to make them regress completely?
Just one other quick thought. I am not sure but there may have been a bit of a miss communication earlier in this thread. I get the feeling that CFS and CSF may have been mixed up a little at some point causing some confusion??????? Or it could be just my 'brain fog'. Either way, I hope you all have a great day!
Sounds like you have have been through the wringer. It is very frustrating being passed back and forwards between MD's and never really getting answers.
What an interesting thread. I just love reading through everyone's posts get encouraged and hopeful to coming out the other end of this insidious thing. Fantastic info again Jackie and Rico.
I found this all rather interesting because initially after having a complete immune crash (or so the Dr's like to put it) 12 years ago I have actually found myself on the Lyme path too. The Dr's back in 2000-2001 ended up labelling me as having Post-Viral-Fatigue-Syndrome (after testing positive for CMV, EBV, HHV6, Ross River Fever with a positive rheumatoid factor) but were also simultaneously on the hunt for the culprit/root cause of my hassles (even though I had been diagnose as Post Viral Fatigue Syndrome?????) So they tested for MS, lupus, thyroid Hashimotos, blah, blah, blah, blah. Had the whole hog - MRI's, EEG's, blood tests, urine tests, full body catscans, lumbar puncture, ultrasounds .....you name it I think I've had it. All of course except testing specifically to Lyme Disease, because on questioning the learned Md's "Lyme is not in Australia".
Well guess what, Lyme is in Australia, people are getting it and dying from it while bureaucrats are twiddling their thumbs actioning as little and as slowly as possible. Lyme is certainly not something to mess around with. I have already lost my gall bladder to it and would prefer not to lose anything else. Trust Rico and Jackie, contact ILAD's as recommended, find yourself a LLMD and get tested/treated.
Hope you find help, health and healing soon.
PS. Have just finished reading a very interesting article which I think relates well with this post:
http://www.envita.com/lyme-disease/finally-one-link-established-chronic-fatigue-syndrome-cfs-lupus-fibromyalgia-autoimmune-disease-chronic-lyme-disease/
What an interesting thread. I just love reading through everyone's posts get encouraged and hopeful to coming out the other end of this insidious thing. Fantastic info again Jackie and Rico.
I found this all rather interesting because initially after having a complete immune crash (or so the Dr's like to put it) 12 years ago I have actually found myself on the Lyme path too. The Dr's back in 2000-2001 ended up labelling me as having Post-Viral-Fatigue-Syndrome (after testing positive for CMV, EBV, HHV6, Ross River Fever with a positive rheumatoid factor) but were also simultaneously on the hunt for the culprit/root cause of my hassles (even though I had been diagnose as Post Viral Fatigue Syndrome?????) So they tested for MS, lupus, thyroid Hashimotos, blah, blah, blah, blah. Had the whole hog - MRI's, EEG's, blood tests, urine tests, full body catscans, lumbar puncture, ultrasounds .....you name it I think I've had it. All of course except testing specifically to Lyme Disease, because on questioning the learned Md's "Lyme is not in Australia".
Well guess what, Lyme is in Australia, people are getting it and dying from it while bureaucrats are twiddling their thumbs actioning as little and as slowly as possible. Lyme is certainly not something to mess around with. I have already lost my gall bladder to it and would prefer not to lose anything else. Trust Rico and Jackie, contact ILAD's as recommended, find yourself a LLMD and get tested/treated.
Hope you find help, health and healing soon.
PS. Have just finished reading a very interesting article which I think relates well with this post:
http://www.envita.com/lyme-disease/finally-one-link-established-chronic-fatigue-syndrome-cfs-lupus-fibromyalgia-autoimmune-disease-chronic-lyme-disease/
Ricobord has done some excellent posts here recently on the history and complications of Lyme diagnosis, treatment and practice, if you are interested. You can search for Rico's posts in the 'search this community' box to the right side of the page.
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No one here is medically trained, but we are glad to relate what we have learned personally from our own experiences. One important thing to keep in mind is that Lyme is very tricky and shows up differently in each person, due to variability in immune system function from person to person and due to other infections that the same ticks often carry (maybe half the time) that have their own sets of symptoms -- so keep an open mind and don't try to line up your own symptoms exactly to anyone else's, but keep an eye on the bigger picture -- which it sounds like you already are.
First note -- the cottage cheese effect sounds like a yeast infection, meaning a fungal infection. Some people are genetically susceptible to yeast, and also Lyme interferes with normal body 'settings' like pH, which can make it easier to get something like a yeast infection. Did your doc give you anything like Diflucan/fluconazole or advise you on limiting sugar in your diet? There are also some diet supplements supposed to be good for you that are yeast-based, and in some people these can take over and cause the symptoms you are having; Florastor/S.boulardii can have that effect in some people (happened to me, gave me brain fog, red eyes, bloating, just felt lousy all the time.)
Docs (and everybody else for that matter) tend to think of a fungal infection as being limited like athlete's foot, and seldom think of it as being able to take over the entire digestive system. It can happen to babies (where it's called thrush) and also to children and adults, as mentioned above. So you might want to run that one by your doc -- for some reason doc's just aren't tuned in to that and even they think only women get yeast infections and only v*ginally, but not so. (Also, if you are susceptible to yeast, it's possible you could have gotten from intimate contact.) Okay, enough on yeast, but do look into it, because a systemic yeast infection lines up pretty well with a lot of your symptoms. And if you do have yeast AND something else, getting the yeast out of the picture will make it easier to treat whatever else is ailing you.
You definitely live in Lyme country ... woodsy areas like NC and Scarsdale are ground zero for Lyme, and even docs recognize that (those of us who live in other parts of the country [like Texas especially] are told 'we don't have Lyme here' and end of conversation.) Don't worry about not keeping the tick ... the tiny ones are classic Lyme-carriers, but dog ticks also can bring infections. Many (maybe half) of Lyme patients never see the tick that bit them and never get the classic round red 'bullseye' rash. And many docs don't take ticks or symptoms seriously, so don't fret over losing the tick. And, it could be that you were infected a long time ago (considering how long you've been sick) and that was a new tick that may or may not have re-infected you with Lyme and/or other co-infections.
Bottom line: the facts are always murky when it comes to Lyme+ infection ("Lyme+" being my shorthand for Lyme and the other diseases [aka co-infections] that often come with Lyme). I never saw a tick, never had a rash, and neither did a family member here, but we both had serious cases of Lyme and a co-infection.
The common co-infections are babesiosis (related to malaria), bartonella, ehrlichiosis, and a few others, all of which have slightly different symptoms and need separate testing from Lyme. And ... the treatment for each may be different, because the bugs are not all susceptible to the same meds. Yeah, I know: why can't it be simpler?
The good news is that you are young and otherwise healthy, and that means your body is putting up a good fight. The first thing I would do is find a Lyme specialist -- which is not as easy as it ought to be, because there is a huge split in the medical community about how serious Lyme+ is, how to diagnose it, and how to treat it. The first docs to 'discover' Lyme about 30 years ago are still high up in the field and their initial impressions of Lyme as hard to get and easy to cure still hold sway in mainstream medicine. There is however an equally serious faction of docs who have continued to research Lyme+ and to understand better its mysteries, but there is much venom directed at the these more progressive thinkers by the original discoverers. These are the players:
IDSA is the Infectious Disease Society of America, and takes the narrow approach that Lyme is rare, hard to get, and easy to cure with a couple weeks of antibiotics. This view claims that it is 'mainstream', and indeed the most usual docs who would treat Lyme+ (that is, the infectious disease [ID] docs and neurologists) usually adhere tightly to the 'hard to get/easy to cure' view, and after a couple weeks of antibiotics, their position is that you're cured, and any remaining symptoms are 'post-Lyme syndrome', meaning that your body is over-reacting to a now-vanquished infection. These guys haven't progressed much at all in their thinking, and there is suspicion among some of us that the epidemic of Chronic Fatigue Syndrome and similar murky diagnoses is really just untreated Lyme.
On the other side of the aisle is ILADS, the International Lyme and Associated Disease Society. These are the progressive thinkers who are not locked into impressions from 30 years ago. Lyme is caused by a spirochete, a spiral-shaped bacterium, in the same family as the bug that causes syphilis. Lyme bacteria are adept at hiding in the body in places that the immune system can't locate them, meaning the bacteria can just hang on making mischief for a very long time. ILADS docs understand this and treat with a variety of antibiotics for an extended period of time, to blast through the slimy shields the bacteria hide in and to keep the level of medication high for a sufficiently long time to attack the bacteria when they are reproducing, which when their cell wall is disrupted is when they are most susceptible to being killed...and Lyme bacteria reproduce VERY slowly, like tuberculosis bacteria do, and standard treatment time for TD is 18 months.
Okay, running on too much here, but in your situation, I would find an LLMD and read up on Lyme:
-- Look for Burrascano's diagnostic and treatment guidelines at ILADS [dot] org, which will give you an LLMD's view of the approach
-- Read 'Under Our Skin' if you have the attention span; if not, watch the movie now available online (I think)
-- Find an LLMD. In your area, there are lots of good LLMDs, and Columbia U medical center in Manhattan has a Lyme research center headed by Brian Fallon. I don't know if they treat or just do research, but they may be able to refer you.
Let us know what you do and how you do, okay? Your spirit is strong, and you've got determination -- and THAT will carry the day. Take care --