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Old 02-20-2008, 06:33 PM   #1
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Angry Help. Any suggestions/ideas?

Hi All, (long post, sorry)

I've posted here before a couple of times but mostly only lurk, mainly because I don't know what's wrong with me and nobody in the medical industry seems to know either.

I've been feeling very ill for a very long time. Here's a recap of the last 18 years of my life roughly.

Age 11: I started having Migraine-like headaches, saw a neurologist and they attempted to help me by prescribing drugs like Anaprox and Periactin to help with my headaches, none of these types of drugs helped at all. If left untreated my headaches will progress over several hours to the point I become nauseated and start vomiting. I was given prescriptions (Phenergan)
for the nausea, which helped with that. They also tried to teach me Biofeedback to relax, which didn't help my headaches much if at all. Finally I was basically told when the doctors at the facility could do no more for me that "some people who have migraines stop having them when they get into their twenties, meanwhile keep choking down those painkillers."

Age 13: I'm not sure when I first started having symptoms of Anxiety, but I remember having it at this age, but never realizing it could be a symptom of some disorder or disease. I also started having problems with my energy levels. No matter how much sleep I would get I started having extreme difficulty awakening in time for school in the mornings. I would always be dragging myself into class 5-10-15 minutes late. The fatigue I experienced then continues now to this day.

Age 19: I saw a TV commercial around this age talking about a new drug that was just released to market called "Paxil". The commercial said that this was to treat "Social Anxiety Disorder" and after they listed the symptoms I thought that I might have that, so I told my dad I wanted to see someone about it.

I saw a psychiatrist who diagnosed me with anxiety and depression and prescribed a series of psychiatric drugs to me over many months. These drugs included Paxil, Prozac, Effexor, Celexa, Zoloft, Luvox, and Neurontin, all of which did nothing for me whatsoever, with the exception of the Neurontin, which made me more drowsy.

Ages 19-22: I went to school during this time to pursue an associate's degree, which I was able to accomplish I think only because I wasn't working at the time (was living with my parents), and was thus able to sleep the extended periods which my body seemed to require of me. (typically 12-14 hours nightly)

I started to realize at this time I had other symptoms. My memory is very poor. Even now I cannot remember much detail about my college years, or when I was very young. I don't remember what was taught to me. I have trouble thinking clearly, organizing my thoughts, and cannot even carry on a normal (verbal) conversation.

Age 22: I got a job, my first boss was exceedingly gracious to allow me to come in late to work each day because I was having these sleep problems. And I was coming in very late each day. I would go to bed at 10 or 11pm, and I wouldn't be able to get up until 10am or noon. During these years I was seeing my GP on a fairly frequent basis trying to figure out what could be wrong with me causing these sleep problems. I was tested for thyroid problems, anemia, sleep apnea, etc. I do have sleep apnea, it is moderate severity but even when using a CPAP, which I tried for 3 months, I found no relief in my fatigue. I tried many more antidepressants at this time, Zoloft (again), wellbutrin, topamax, adderall,


Age 27: The boss that hired me left the organization and the new boss was not sympathetic at all to my situation. In fact, he took it to the top and requested that I be forced to resign, so I did. I lived with my parents for the next year and didn't work. My parents helped me continue to see doctors to try and figure out what was going on with me. I saw my family doctor again and requested to try a different type of antidepressant to see if it would help, I thought maybe Emsam (Selegeline transdermal patch) might be worth a try. It cost me an arm and a leg and it did nothing for me after almost 3 months of use. I also got tested for Lyme disease at this time. My GP recommended the serum PCR for Lyme, it came back negative. I wanted to be tested again with a different test, so I researched and recommended trying the Bowen Q-RIBB, it came back positive. 1:128 ratio She put me on 500mg Biaxin and 100mg Doxycycline, which I took for about 4 months with no result whatsoever. I decided to research more and heard about a salt and vitamin C protocol. I tried it for about 3 weeks. If memory serves I was feeling slightly more energetic at first, I also developed muscle twitches while on this, and they persist to this day. They are random, they can be in any part of my body, but seem to be particularly common in my eyelids. I stopped the salt and vitamin c protocol. I also noticed that I was having some numbness in my hands and feet at times, which continues even today.


Age 28: I was lucky enough to get my old job back (the boss who got rid of me was demoted). This time I forced myself, and continue to force myself up every morning to get to work on time, and I do make it to work on time or no later than 10 minutes late sometimes. But I continue to feel absolutely awful every morning when I wake up. I can try to go to bed earlier but it doesn't help. I feel the same whether I get 10 hours or 5 hours of sleep. I have to force myself to do everything. I have have almost no joy in my life. I feel extremely anxious for no identifiable reason. Everything is a struggle. I almost literally feel like I'm walking around with 10-15 layers of clothing on, and a ball and chain dragging behind me, while everyone else is moving about normally.

I saw a Cognitive Behavioral Therapist for about 3 months and I wasn't getting any improvement at all. I would try the exercises but they never get any easier and I don't feel any more at ease with time.

Every year seems to get a little bit worse as far as my symptoms, but the past few months have been particularly bad. In September I started taking Remeron (another antidepressant), to see if it would help me. It helped slightly with my anxiety, but provided no additional improvement over time or with dosage increases. I also started up on the salt and vitamin c protocol again in October. Around mid-December something bad happened, from one day to the next I completely lost my ability to have erections. I immediately stopped the remeron thinking it was the culprit, I also ceased the salt and vitamin C. Shortly after this I became very ill with fever and nausea, I didn't eat all day one day. About a week after that I came down with strep throat, which I had never had before in my life.

I was able to regain some of my erectile function over the week following the loss, but things are not back to 100% almost 3 months later. I've also lost some sensitivity and was also having some pelvic pain. I saw my GP and I asked if I should have my testosterone levels checked, and she ordered the test. It came back at 167. The reference range was 250 to 2000, but I had the blood draw about 3pm that day, supposedly taking it late in the day affects levels. I saw a urologist. He checked me out, retested my testosterone (early AM blood draw) and some other associated hormones, and my testosterone came back 375, in the normal range. He told me I should lose weight and that that would increase my testosterone and fix my erectile problems. Since then I've lost about 12 pounds.

A couple of weeks later, I started having problems with my urination. Again it seems like the change happened from one day to the next. I started having to go to the restroom many more times throughout the day than I had up until that point. I also started having to go even when I drank just a small amount of fluid.

Less than a week after that, again from one day to the next, another horrible thing happened to me. My vision started to suffer. This was less than a couple of weeks ago. Suddenly I realized that I could not see things as well that I saw just the day before. I would say overall my ability to see was reduced by about 15%. My eyes "fatigue" very easily now, and get sore, I cannot see as well at night, and glare now bothers me. All of this was not a problem 2 weeks ago and the changes happened from one day to the next.

I was kind of in a panic at this point, and still am to a degree. I called my family doctor thinking maybe I was developing diabetes (because remeron has been known to induce diabetes in people) due to the symptoms I was developing such as numbness in hands and feet, vision problems, and urinary problems. She ordered a urine culture/test and a blood test, including a1c, vitamin deficiency tests, liver/kidney function, etc. I received the blood results yesterday, everything was normal except that my vitamin D was low. (Probably because I don't go outside that much, although I'm starting to do that more now). I'm still waiting on the urine results.

I have appointments next week with a neurologist, a urologist, and an opthamologist to try and help figure out what's going on with me. I have doubted the Lyme Disease diagnosis in the past, but as time goes on I think about it more and more. My sister who is a nurse thinks I might have MS.

Here's a more complete list of my current symptoms

Anxiety/Depression that doesn't respond to medication or CBT other than Remeron and very slightly at that
Headaches (as long as I exercise 30 min per day I do not get them)
Chronic cough
Dry skin on hands/arms with rashes? This developed within the past 6 months.
Slowed thinking
Poor memory
Difficulty concentrating
Restlessness/fidgeting
Feeling slowed down
Urinary problems
Erectile dysfunction
Vision changes
I very rarely dream, or recall them anyway. I might remember a dream one day out of a month if lucky

Does anyone have any ideas about what might be happening to me or any suggestions about what I should do? Could these new symptoms be a herx, am I stirring up Lyme bacteria? Or did the salt and vitamin c cause some damage to my body that can't be detected by the doctors? How good of a test is the bowen Q-RIBB?

I'm really worried that some other terrible symptom may manifest itself at any time. I really don't know what's going on with me. The past couple of days I've had a lot more muscle twitches, particularly in my groin area and also in my left eyelid. I feel like I'm dying.

I've been trying to take better care of myself since the first of the year. I'm exercising almost every day for at least 30 minutes. I'm eating much more healthily, whereas I used to eat nothing but junk before I'm now eating mostly fruits and vegetables.

I apologize for the long post, and thanks for any help!

BorkBork

Last edited by BorkBork; 02-20-2008 at 06:35 PM.

 
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Old 02-20-2008, 08:23 PM   #2
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Re: Help. Any suggestions/ideas?

Hi borkbork, If you tested positive then I think I would suggest you gettting to a LLMD, Lyme Literate Medical Doctor. I honestly feel that you were not treated long enough on the antibiotics and the Vitamin C ...

If you look at the top of the board there is a list of doctors and clinics. Possibly you will find someone close to you. If not then you might start a new thread and ask where the closest one is to you. In my opinion this should be your main goal is to get to a doctor that treats lyme. "IF" you have had lyme all this time it will take a long time to treat it.

sorry you have had to go through all of this for so long.

hope you can find answers soon!


 
Old 02-20-2008, 08:42 PM   #3
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Re: Help. Any suggestions/ideas?

Hi jojo,

Thanks for your reply.

Ticker gave me a name of an LLMD awhile back, but he is about 1000 miles away from where I live. Perhaps now I am more ready to go that route though. I'll have to figure out how I can pay for those kind of expenses.

I'm supposed to see a neurologist in a few days, any idea if he will be able to help me?

BorkBork

Last edited by BorkBork; 02-20-2008 at 09:49 PM.

 
Old 02-21-2008, 01:09 PM   #4
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Re: Help. Any suggestions/ideas?

Borkbork,

I was seen by a neurologist. Not too much help. He had checked me out after my primary had no idea why I woke up one day with tingling in my face. Neurologist did MRI's, eeg's, scans, etc. All came back ok except for some white matter on brain. Finally at last minute and a couple of months into testing he decided to do full blood work up. Boy was I surprised I had lyme.

I went back about two months ago because he had said he wanted to redo MRI at some point of brain. It showed some things that are typical with lyme. Other than that, all he wanted to do was spinal and I said no way. I already know I have lyme, not putting myself thru that.

Find yourself a good LLMD. I tried an infectious doctor and was let down. She admitted I had lyme but my symptoms "did not fit inside the box". What box she was talking about I still have not figured out.

I am finishing up first 4 weeks of IV rocephin after being on oral abx since April. Go back in Monday to see LLMD and find out if we are keeping the picc in. Even though it is a pain I feel like some things are getting better, but then other things are showing up so feel like if he takes me off at this point will go backwards.

I had traveled almost 1100 miles for this LLMD but I also knew I would be moving close to the area during treatment but at this point, i would travel whereever I needed to for treatment.

 
Old 02-21-2008, 05:45 PM   #5
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Re: Help. Any suggestions/ideas?

Hi fernee,

Thanks for replying.

Sounds like he helped you get a diagnosis anyway. What kind of blood workup did they do? Or which Lyme test was used? I doubt my neurologist (whom I've yet to meet) would consider it on his own, based on what I've heard from others, but maybe I can ask to have the same test done that you have had.

BorkBork

 
Old 02-21-2008, 06:01 PM   #6
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Re: Help. Any suggestions/ideas?

I had the elisa which luckily came back positive so then they did the western blot.

My husband had the igenex test which tests for specific bands.

 
Old 02-21-2008, 06:41 PM   #7
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Re: Help. Any suggestions/ideas?

Ok, maybe I can get my GP to have those tests done.

Thanks again.

BorkBork

 
Old 02-21-2008, 07:46 PM   #8
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Re: Help. Any suggestions/ideas?

Hi Bork/Bork. I am sorry you are still having so many symptoms. Remind me where you are located.

From what I understand, saliva tests are more reliable than blood tests for hormone testing. You may want to consider this. One lab that does this testing is ZRT. To find a doctor who uses this, you can try calling a compound pharmacy in your area. These pharmacies often make the meds for doctors who do saliva testing.

Usually neurologists are not Lyme knowledgeable unless they specialize in Lyme. That is not to say the one you see will not be knowledgeable.

Hang in there okay?

 
Old 02-21-2008, 08:02 PM   #9
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Re: Help. Any suggestions/ideas?

Thanks Ticker,

I've updated my profile to reflect my location (Texas).

I'll look into the saliva testing. Hopefully the neurologist will provide some help anyway.

BorkBork

 
Old 02-22-2008, 07:13 AM   #10
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Re: Help. Any suggestions/ideas?

Hi BorkBork,

If I were in your shoes...I would order a test kit from IGeneX Lab (they have a website), there is no charge to order the test kit. If you take it to the neurologist appt and just ask (politely insist) that the Western Blot be ordered along with the coinfections testing. If it's too late to take to that appt, any doc can sign off to have the testing done. I think otherwise you're wasting your time and money if you only get an Elisa test or even a Western Blot with just any lab. I tested negative via Elisa and Western Blot 2 years ago. I am now well on my way to a Lyme diagnosis after 2 long years of h$#@! I finally went to an LLMD, am awaiting my IGeneX results, however my initial testing already shows positive for babesia, one of the coinfections. I am certain my dad got infected as well and will be getting tested via IGeneX too.

Sorry to hear you're feeling so terribly. Hang in there and keep searching for help and answers. You can at least get the testing done, look at results and look for an LLMD at that point. Though I would suggest you go straight to the LLMD route, as it is a clinical diagnosis and testing, even with the best of labs, is not 100% reliable. Keep us posted. Mona

 
Old 02-22-2008, 06:20 PM   #11
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Re: Help. Any suggestions/ideas?

Thanks Mona, I am trying to get in touch with an LLMD but their office is closed today.

Does anyone here have any experience with rife machines? It is something I am considering as well.

 
Old 02-23-2008, 07:29 AM   #12
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Re: Help. Any suggestions/ideas?

Hi BorkBork. I believe there is a Lyme doctor in LA, (Dr. Forrester) but I do not have any information about him. I suggest contacting support groups in your state for information and/or to find the closest doctor.

Let us know how your appointment goes with the neurologist.

 
Old 02-26-2008, 06:10 PM   #13
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Re: Help. Any suggestions/ideas?

Hi All,

Ok. I went to the neurologist today. He seems to think that my symptoms may not all be able to be classified as a single condition, that there could be multiple things going on. He suggested that it could be Multiple Sclerosis but that I do not present with the classic symptoms. He also said that a lot of it could be just from anxiety. But I asked him would anxiety cause a person's vision to change drastically from one day to the next, and he basically said again that there may be more than one problem I'm dealing with. I have also been on about 20 different psychiatric drugs over the past 8 years and none have worked for me at all except for Remeron and it only helped slightly by reducing my feelings of anxiety, it didn't eliminate the anxiety, just my reactions to it were lessened.

Nevertheless he has given the go ahead to have an MRI done on my brain and cervical spine. I am also to go back to his office for some kind of neuro sensory testing where they will insert needles into my muscles and send electrical shocks and analyze the output the machine receives (I think).

I also saw my Urologist today. He also suggested that my problems could be caused by anxiety, and he assured me that the salt and vitamin c I had been taking wouldn't have caused these kinds of problems or any serious damage to my body. (I was quite worried about that)

Is there anything I should know about these procedures, or anything else I should tell them when I go in for them?

Thanks,
BorkBork

 
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