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    Old 11-11-2006, 03:36 PM   #1
    BorkBork
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    I don't know what else to have done

    Hello,

    I've been reading these boards for several years now in the hopes I might find a clue as to what might be wrong with me. The medical system has not provided me with anything beneficial as of yet. the doctors apparently can't find a solution to my problems, but I am running out of options, and I am getting slightly worse every year, so I am getting increasingly frustrated.

    My main problem is that I sleep 12 hours a night typically, and when I wake up I feel awful, like I haven't slept at all. This has been a problem for about 13 years now. I have many other symptoms too, which may or may not be related to what is making me feel so fatigued, including:

    Frequent headaches
    Unexplained nausea
    Muscle twitching
    Hair loss
    Increased appetite
    Weight gain
    Chronic cough
    Poor short-term memory
    Slowed thinking
    Difficulty finding words when speaking
    General feeling of being slowed down
    Generalized Anxiety
    Occasional joint pain (hip)
    Occasional body aches (seemingly random location)
    Alternating diarrhea/constipation

    I have been to many doctors trying to find out what the problem may be. I had my GP check my blood for any typical problems like anemia, thyroid problems, etc, none were found. We both agreed that I could have depression or an anxiety disorder, so I started out on some different psychiatric drugs, including Zoloft, Wellbutrin, and Adderall XR, trying each for about 6 weeks. None of these drugs helped my situation in the slightest. It was as though I wasn't even taking the drugs as far as results.

    I have been to the sleep doctors, who, after performing a sleep study, diagnosed me as having "moderate" sleep apnea (21 apneic episodes/hour), but even using a CPAP for about 4 months every night produced no reduction in any of my symptoms, even though data downloaded from the unit reported that the machine was correcting the apneas.

    I have been to an endocrinologist, who did some additional bloodwork beyond what my GP did, ordered a Thyroid Ultrasound, and found 3 small nodules as well as a slight goiter, but he wasn't too concerned about these things, and said that he was 100% sure that my problems weren't related to my thyroid. Nevertheless, he did offer me a small dose of Levothyroxine for awhile to see if I improved, which I did not.

    After all this it was decided to take another look at the possibility of a psychiatric disorder, and so I then proceeded to try even more psychiatric drugs. I was on each for at least 4 weeks. With some of the drugs the dosage was increased to the maximum dosage over a period of weeks to see if there was any change, which there was not. Off the top of my head these are the drugs I had tried: Zoloft, Wellbutrin, Adderal XR, Provigil, Prozac, Luvox, Neurontin, Celexa, Clonazepam, Alprazolam, Effexor, Paxil, Topamax, and I even tried a new type of antidepressant, which comes in the form of a skin patch called Emsam. To my disappointment, none of these drugs did anything positive for me. A couple of them did make me even more drowsy, though.

    One of the last things I tried was something called cranial electrotherapy stimulation (CES), which is an electronic device you use at home which sends a mild electrical current into the brain which is supposed to be helpful for some psychiatric disorders. The device I used was the Alpha Stim SCS. For me it did not help in the ways I hoped it would. It actually gave me insomnia, which is quite a different thing for me, but I couldn't go to sleep when I felt sleepy and it was very frustrating. I used it daily for 3 weeks. I think it may have helped my cognitive performance very slightly, and it definitely helps to eliminate my headaches, although popping a few ibuprofen provides basically the same effect. I'm not sure why but after a few weeks of using this device I started to develop pain behind my eyes, so that was one of the main reasons I stopped using it, although the insomnia gave me good reason to stop as well.

    So right now I'm seeing a counselor, actually he is a CBT practitioner, but he says that until my sleep problems are addressed CBT won't be of much use to me. Does that sound right? He also says that he thinks I have ADD based on some tests he ran, but I tried Adderall XR (up to 30mg) and Provigil, and neither one did anything at all for me.

    My GP did some more advanced bloodwork a month or so ago as well, looking for things like Mono, Epstein-Barr, Rheumatoid arthritis, etc. But of course it all came back negative.

    I have been told so many times that this is all in my head and even my own father doesn't believe that I have a real problem. He just thinks that I am someone who is exactly like everyone else in the world, but just that I can't man up to the things that everyone else has to deal with. But I know this cannot be true. It cannot be "normal" to live a life of misery day-in and day-out. It cannot be normal to struggle to do the things that were no problem at all 15+ years ago. I am lucky to get showered and dressed each day. I was extremely active in my younger years, I played baseball on a team, I was outside every single day, etc, now what I am living can barely be called an existence.

    I have lost a job that I enjoyed very much to this problem and have not worked for 8 months because I know that I cannot hold down a job when I can't wake up reliably and without feeling like I haven't slept hardly at all. My parents are helping me out with doctor bills and such, but their patience is wearing thin, since they are seeing no results.

    If anyone has any suggestions as to what I should do next I would very much appreciate it.

    Thanks in advance for any replies.
    BorkBork

    (sorry for the long post)

     
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    Old 11-11-2006, 03:48 PM   #2
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    Re: I don't know what else to have done

    Hi,

    In reagrd to the CBT Counsellor saying until your Sleep problems are addressed CBT will not be any use to you is incorrect. Sleep Apnea is a completely different area of Counselling required and is not related to CBT Counselling, so this shouldn't effect your Counselling sessions at all.

    CBT Counsellors work on negative feelings. They are trained to believe negative feelings result in negative emotions and this results in various non-physical symptoms which result in a negative atmosphere in your life and areas of your life. So basically the CBT will think negativity has caused your symptoms. CBT is one of the weakest areas in Counselling. Person centered Counselling would be more ideal for you because you do not have a behavioural problem hun.

    But I am confused why your Counsellor would give you idea as to a Diagnosis. I understand why he would diagnose you in his own mind so he can have a idea for the layout of a treatment plan but it isn't appropriate your Counsellor saying you have ADD.

    You do no thave ADD. Sleep Apnea will cause your tiredness symptoms and the nodules on your Thyroid are most likely causing your other symptoms. I would see a different Doctor and tell him/her you want medication and treatment for these nodules and ask for a referral to a Gastroentologist.

    Also on a extra Counselling side, it is possible that you are depressed because of your symptoms and losing your job and this will in turn aggravate the symptoms and make you feel more sensitive to symptoms and emotions in general. In this case - see a Depression Counsellor.

     
    Old 11-12-2006, 04:24 AM   #3
    BorkBork
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    Re: I don't know what else to have done

    Thanks for your reply. I don't think my counselor officially diagnosed me, or attempted to, but he just thinks I have ADHD.

    As for the depression thing... if I am depressed, and I'm not certain I am, I would have had to have been depressed for all these 13+ years. Losing my job didn't change the way I felt. I was disappointed that I lost the job, I enjoyed working there, but I realize that I lost it due to my sleep problems.

    You say that you don't think I have a behavioral problem, but I actually have had some problems in my past. I was bullied a lot from about age 4-14 pretty badly in school, but then I'm sure a lot of kids go through that. Around age 13-14 I became more aggressive I think and I was always getting into trouble. I would get such a thrill out of "almost" getting into trouble, without actually doing so. I craved that kind of excitement at the time. Around age 14 my parents put me in a private school due to all the bullying. While at this private school I do feel that I changed a lot. I became a more caring person, but I was still prone to getting into trouble and stuff like that up until about age 17. It was about age 13 or 14 when I began to have problems getting to school on time because I was exhausted from the unrefreshing sleep I would have each night, and this problem continues to this day, and is the biggest problem that I continue to have.

    Thanks again for the reply.

     
    Old 11-12-2006, 06:16 AM   #4
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    Re: I don't know what else to have done

    BorkBork-
    I know this is such a difficult situation to deal with. I know you are just wanting some kind of answer and a solution so you can get back to living life the way it is meant to be lived.

    I have to ask, have they tested you for fibromyalgia? If not, then it might be worth looking in to. If you go to the fibro board, there is a thread at the top that has a kind of "check list" of some of the symptoms. Take a look at it.

    I am currently seeing a PM doctor who has confirmed RSD and fibro and he started me on Depakote which really has seemed to work. I'm not saying it would work for you, but my PM doctor explained some of the ways fibro affects you and many of the symptoms you have are what I had been dealing with for years. I can tell you that I started the Depakote about a month ago, and for the past 2 weeks, I am a TOTALLY different person. I have been sleeping much better and I get up in the mornings and am actually more motivated than I've been in over 3 years. I have gotten so much done in the past two weeks. My husband is even making comments about how good it is to have his wife back again. I like having me back too.

    Now, every day isn't "perfect" and I still have some bad days and a bad night here and there, but I feel human again. Please look at the fibro board and see if that check list sounds familiar to what you are going through.

    If you are diagnosed, then my personal advice is to find a specialist who deals mainly with fibro. That is one of my PM doctors main areas of expertise and he is very knowlegable in treatments and such.

    Good Luck.
    Lezlee

    Last edited by ozzybug; 11-12-2006 at 06:18 AM.

     
    Old 11-12-2006, 08:24 AM   #5
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    Re: I don't know what else to have done

    Bork, have you looked into food allergies and leaky gut syndrome? You can search this web site for the leaky gut syndrome (plus the whole web!).

     
    Old 11-12-2006, 11:49 AM   #6
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    Re: I don't know what else to have done

    Hi again,

    Yes but the behavioural problems you had were in your past not in your present and are not affecting your life now. This is why I brought up behavioural problems

    A Counsellor can not officially diagnose you as having a certain illness hun but they can percipitate in the diagnosis and work in conjuction with your GP.

    You can be depressed for 40 years and not be diagnosed. Every depression is different and effects people in different ways. There is a common misconception that Depression is simply "feeling blue" when it isn't. Tiredness, inability to sleep, mood swings, feeling unwell, no energy to perform usual tasks and losing enjoyment in things which you used to enjoy is some signs of depression.

    I hope you're better soon anyway.

     
    Old 11-12-2006, 12:19 PM   #7
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    Re: I don't know what else to have done

    Wow, well I have all your symptoms.

    I also have some of the conditions you mentioned about: hypothyroid, anxiety & depression. My symptoms went away hugely when I was taking a higher dose of Synthroid, but since my dosage was lowered the symptoms returned. Blood tests revealed that my thyroid levels are borderline high (even though they FEEL LOW) so my doctor does not believe this is thyroid related. I've had other hormone levels checked too (for perimenopause) but they were all fine. Anxiety and depression can account for only some of the symptoms mentioned, but when my thyroid dose was higher those symptoms were significantly decreased, if there at all. Even the bowel habits were normal -- now I am told I have IBS, even though I have no complaints when my thyroid level feels good.

    You mentioned that your doctor gave you a small dose of levothyroxine to try -- this is not the way thyroid medications are started. A high dose is taken at first and then you decrease until the proper levels are found. Also, blood tests are never guaranteed when checking for thyroid hormones -- I had mine routinely checked every 3 - 6 months after my symptoms began, and it took 3 YEARS for it to finally be detected! So there is still the possibility that this is thyroid related.

    I'm going to check up on some of the advice others offered you (for myself as well), but I suggest you get a second opinion about your thyroid.

     
    Old 11-12-2006, 02:08 PM   #8
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    Re: I don't know what else to have done

    Hi BorkBork. I agree about getting another opinion about your thyroid. Did you have the Free T3, Free T4 (besides the T3, T4) and thyroid antibody tests done? They are not usually done but are necessary for a comprehensive view. I suggest that you get these tests done and get copies of your results. Even if the results are in the normal range, they may not be optimal for you.

    There is an auto-immune type of hypothyroidism called Hashimoto's Thyroiditis. This would be evident if your thyroid antibodies are elevated. Your other ranges can be in the normal range. I have this and my other levels have always been normal, despite many symptoms. Finally when the antibodies were tested, they were very elevated and I started treatment.

    It is my experience that the thyroid is treated starting with small doses and increasing slowly over a period of several weeks. It can take time for treatment to be optimalized. The thyroid board at this site is great.

    Another consideration may be Lyme disease. Lyme disease is a multi-system bacterial infection caused from the bite of an infected tick. Many people are bitten by ticks without knowing it because they are tiny and inject a numbing agent so you cannot feel them on you. Lyme disease is the second fastest growing infectious disease in the US after AIDS, and it is the number one vector-borne disease. It is in every state.

    Below is a Lyme symptom list. You can have any combination of symptoms.

    Unexplained fevers, sweats, chills, or flushing
    Unexplained weight change--loss or gain
    Fatigue, tiredness, poor stamina
    Unexplained hair loss
    Swollen glands
    Sore throat
    Testicular pain/pelvic pain
    Unexplained menstrual irregularity
    Unexplained milk production: breast pain
    Irritable bladder or bladder dysfunction
    Sexual dysfunction or loss of libido
    Upset stomach
    Change in bowel function-constipation, diarrhea
    Chest pain or rib soreness
    Shortness of breath, cough
    Heart palpitations, pulse skips, heart block
    Any history of a heart murmur or valve prolapse?
    Joint pain or swelling
    Stiffness of the joints, neck, or back
    Muscle pain or cramps
    Twitching of the face or other muscles
    Headache
    Neck creeks and cracks, neck stiffness, neck pain
    Tingling, numbness, burning or stabbing sensations, shooting pains
    Facial paralysis (Bell's Palsy)
    Eyes/Vision: double, blurry, increased floaters, light sensitivity
    Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
    lncreased motion sickness, vertigo, poor balance
    Lightheadedness, wooziness
    Tremor
    Confusion, difficulty in thinking
    Difficulty with concentration, reading
    Forgetfulness, poor short term memory
    Disorientation: getting lost, going to wrong places
    Difficulty with speech or writing
    Mood swings, irritability, depression
    Disturbed sleep-too much, too little, early awakening
    Exaggerated symptoms or worse hangover from alcohol

    Ticks can also transmit several serious co-infections: Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. When Lyme disease is a possibility, it is very important to see a knowledgeable doctor. Many doctors do not understand it and follow outdated treatment protocols. No test is completely reliable, and results can vary by lab. If you think this may be a possibility and you would like a doctor recommendation for your area, let me know.

    Do not give up. You will find out what is wrong.

     
    Old 11-15-2006, 04:23 AM   #9
    BorkBork
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    Re: I don't know what else to have done

    Thanks everyone for the replies.

    I didn't mention it but the endocrinologist tested my blood for antibodies and he said it came back negative. I will see about getting a thyroid test for free T3 and T4.

    I have not looked into food allergies but I have thought about it. I brought it up to my counselor awhile back but he said he didn't think it would cause my symptoms, so I didn't really pursue it.

    How does one go about getting "tested" for Fibromyalgia? I assumed Fibromyalgia was simply diagnosed via process of elimination of more typical health conditions. Even if I get the diagnosis my understanding is that there isn't much that can be done for it. I assumed the same for Chronic Fatigue Syndrome. Either way, if true, getting either of those diagnoses doesn't help me much if there is no way to cure it.

    I'm glad someone brought up Lyme Disease. This was to be the next thing I would check into, I purposely didn't mention it before, because I wanted to see if anyone would suggest it, assuring me I wasn't crazy for considering the idea.

    My father is not very supportive of me going this route but he is willing to pay for the testing anyway at this time.

    Thanks again everyone, I appreciate your input.

     
    Old 11-15-2006, 05:45 AM   #10
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    Re: I don't know what else to have done

    BorkBork, traditional allergists have a very narrow view of food allergies. If you hit a dead end with an allergist with the food allergies you might want to consider going to an alternative doctor to further pursue it. My daughter and myself have long stories about food allergies/symptoms and which doctors helped us and which didn't.

     
    Old 11-15-2006, 09:42 AM   #11
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    Re: I don't know what else to have done

    You may also want to check into Candida infection. Many doctors fail to or are reluctant to diagnose it. You sypmtoms sound very similar.

     
    Old 11-15-2006, 10:05 AM   #12
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    Re: I don't know what else to have done

    Hi BorkBork. Lyme disease can cause many seemingly unrelated symptoms. Please know that no test is completely reliable, and results can vary by lab. Some people who have Lyme do not test positive.

    It is important to see a knowledgeable doctor who will consider your entire history and test you at a Lyme reputable lab such as IgeneX in Palo Alto, CA. If you would like a doctor recommendation, let me know.

     
    Old 12-19-2006, 08:40 PM   #13
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    Re: I don't know what else to have done

    Just thought I'd update in case anyone might be interested:

    I got tested using Bowen Labs' Q-RIBb test and it came back positive with a serial dilution value of 1:128. Prior to this I had a PCR done which came back negative.

    Not sure exactly what it means but my GP is starting me on some Doxycycline and is going to refer me to an infectious disease specialist.

    I'm aware that most docs, including ID docs are not knowledgeable about Lyme, but I will humor them and see what they say.

    Thanks once again everyone for your input

     
    Old 12-19-2006, 09:28 PM   #14
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    Re: I don't know what else to have done

    Hi BorkBork. I am glad you were tested!

    What dose of Doxy are you taking? A few tips about Doxy. Do not have any dairy, magnesium or iron products two hours before or after taking it or it will not be absorbed properly. If it makes you nauseous, eat something substantial and non-dairy before taking it. Avoid the sun. You can get a severe burn in minutes even when wearing sunscreen. Do not lay down for at least an hour after taking it or you can ulcerate your esophagus. This is very painful! Drink a full glass of water when you take it for the same reason.

    Whenever you take any antibiotics, make sure you take high-quality acidophilus capsules. They replace the good bacteria in the body and help to prevent yeast overgrowth. The best ones to get are refrigerated. Most healthfood stores have them. Wait at least two hours before or after taking the antibiotics to take the acidophilus.

    Be aware of the Jarisch-Herxheimer Reaction (herx). Often, when people who have Lyme take antibiotics, their symptoms become worse or they get new ones. When the antibiotics kill the bacteria, toxins are released making them feel sicker. It can be very scary when it happens, but it is a good sign the antibiotics are working. Although it can vary individually, many people experience this at the beginning of treatment and every three to four weeks.

    It is a good idea to document your symptoms daily. One way to do this is to list the three main symptoms you have each day and a numerical rating of their severity, from 1-10. Over time when you review this, you can see when your herxes occur and how you are responding to the meds.

    You are right., infectious disease doctors are not usually the best to see for Lyme disease. It is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, and it may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.

    If you would like a doctor recommendation, let me know.

     
    Old 12-19-2006, 10:05 PM   #15
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    Re: I don't know what else to have done

    Thanks for the info Ticker.

    I live in central Texas so if you know of any doctors in that area that would be good information to have.

    Thanks

     
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