I have been having a lot of nerve issues today; my hands and legs have been tingling on and off all day. I spent alot of time out in the sun, which is rough with sensitivity from the sun due to the antibiotics, and I got sunburned. I did not realize how long I was out there - partying it up and all for the 6 year old's bday......
Anyway, right now my hands are "buzzing" and my right foot is numb. I started having migrating tingling in my face around 6pm, and it was a weird sensation. I guess I never really thought about how serious this stuff can be, and always assumed it was from a previous back injury or a new Lyme symptom. You never really sit back and think, "wonder if my brain is under attack".
Saturday, May 31, 2008
Friday, May 30, 2008
The past week......
has been a like whirl-wind. I have been praying and asking for prayers from anyone who reads this!
I have not felt physically good much, until Wednesday. I finally got over that horrible spinal headache, and have just about cleared the junk from the bronchitis!! I felt 1oo million times better on Wednesday and did tons of laundry and cleaned some house. I had a good day, and a good night at church as well. I slept good that night as well, with no sleep meds!! Thursday was good, but I was tired! I guess Wednesday had caught up to me. We took Kendra to the American Girl Store and Bistro for her birthday from mom. She (we) had a good time! I love those good days when there is not much bothering me!! Kendra calls me sleepyhead all the time and she is right. I have not gone but maybe 2 days here lately without some kind of nap. Today I could hardly keep my eyes open and fell asleep in the chair, the kids had gone to play upstairs - glad I have good kids that can occupy themselves without trouble!!
Anyway, I have been collecting all the recent blood tests and MRI's from everywhere to take to Houston with me next week. I am trying to get a good picture of my history so he gets a good picture of the Lyme and the MS/lesions and what my body has been doing here lately. It is hard for me to keep up with it at times, hence the blogging now.
I have not felt physically good much, until Wednesday. I finally got over that horrible spinal headache, and have just about cleared the junk from the bronchitis!! I felt 1oo million times better on Wednesday and did tons of laundry and cleaned some house. I had a good day, and a good night at church as well. I slept good that night as well, with no sleep meds!! Thursday was good, but I was tired! I guess Wednesday had caught up to me. We took Kendra to the American Girl Store and Bistro for her birthday from mom. She (we) had a good time! I love those good days when there is not much bothering me!! Kendra calls me sleepyhead all the time and she is right. I have not gone but maybe 2 days here lately without some kind of nap. Today I could hardly keep my eyes open and fell asleep in the chair, the kids had gone to play upstairs - glad I have good kids that can occupy themselves without trouble!!
Anyway, I have been collecting all the recent blood tests and MRI's from everywhere to take to Houston with me next week. I am trying to get a good picture of my history so he gets a good picture of the Lyme and the MS/lesions and what my body has been doing here lately. It is hard for me to keep up with it at times, hence the blogging now.
Thursday, May 29, 2008
Hopping on a plane......
next Wednesday to Houston to see an MS (Multiple Sclerosis) specialist. I saw the neurologist here today and he thinks I do have MS. We compared the MRI's from the past to the new one and there are more lesions on the brain. I also have a lesion on the C3-4 Cervical Cord. He said I have the IgG markers that would normally be non-specific, except that I have more lesions that have shown up on the brain and cord, along with the band markers from the CSF, so it is a positive diagnosis of MS. He was happy in my muscle strength but wants me to start treatment for MS soon. He is suggesting Avonex since I am considered to have mild symptoms currently. He referred me to a MS specialist, Dr. Brod, in Houston and I have already set an appointment with him for next Wednesday. He is also versed in Lyme, which makes me feel better about the visit. I will fly down there by myself to see him. It is cheaper than driving, staying in a hotel, and feeding 4 of us for 2 days.
Wednesday, May 28, 2008
So far so good today.....
I woke up feeling better today. I slept like 20 hours yesterday though. I woke up without the throbbing headache, ate and took all my meds, so maybe it will not kick in. Maybe there is a light at the end of this tunnel........ that is not from the headaches!! :)
I will go see the neuro tomorrow about the results from the MRI's and spinal, as they have the results back in now.
I will go see the neuro tomorrow about the results from the MRI's and spinal, as they have the results back in now.
Tuesday, May 27, 2008
Igenex Results
Well, Dear LLMD (Lymes Literate Medical Doctor) called today with the news on the recent Igenex (tick born disease specialty labs) tests and told me I have tested positive for Babesia, and Erlichiosis, but not for the Bartonella like we were thinking. One is treated with antibiotics and the other I have to be off antibiotics. So, we are dealing with the Lymes treatment first, and seeing how that goes for the next month or so. These things are normal in people with Lymes, and are called co-infections. Ticks are nasty little buggars and carry nasty (not so little) diseases. As most stories go, I do not remember EVER having a tick on me, but I used to go camping a lot as a child and was raised outdoors pretty much. You would not know it now, as I am an air conditioner (spoiled) baby these days!!
As for the headaches, I am still dealing with them. I called the neurologist today and he called me in a prescription for a pain/caffeine pill. It took some of the edge off, but the pressure is still there. I will give it a few days and call him back for a blood patch so I can get through this.
I still have no reports on the spinal tap or other 2 MRI's yet. I plan on calling then tomorrow and seeing if there are any results since my next appointment is not until next Wednesday.
As for the headaches, I am still dealing with them. I called the neurologist today and he called me in a prescription for a pain/caffeine pill. It took some of the edge off, but the pressure is still there. I will give it a few days and call him back for a blood patch so I can get through this.
I still have no reports on the spinal tap or other 2 MRI's yet. I plan on calling then tomorrow and seeing if there are any results since my next appointment is not until next Wednesday.
Monday, May 26, 2008
Day 5......
Happy Memorial Day to those who are and have served in the services first of all!!
And on to the 5th day of spinal headache hell. I can't sit up for very long, as it starts to throb and feels like a freigh train's acomin'. It hurts my head to cough (and I still have congestion from the dang bronchitis), it hurts to bend over or lean in any direction, and to put any pressure like going to the bathroom. lifting myself out of the chair or off the couch, even sitting hurts trying to lower myself into a chair. I am afraid when I call tomorrow and talk to the Neuro, he is going to want me to go in and have a blood patch done. I do not want to do it because the cost, but life sucks when all you can do is sleep or lay down flat, especially when I have 2 small kids and homeschool them!!
And on to the 5th day of spinal headache hell. I can't sit up for very long, as it starts to throb and feels like a freigh train's acomin'. It hurts my head to cough (and I still have congestion from the dang bronchitis), it hurts to bend over or lean in any direction, and to put any pressure like going to the bathroom. lifting myself out of the chair or off the couch, even sitting hurts trying to lower myself into a chair. I am afraid when I call tomorrow and talk to the Neuro, he is going to want me to go in and have a blood patch done. I do not want to do it because the cost, but life sucks when all you can do is sleep or lay down flat, especially when I have 2 small kids and homeschool them!!
Sunday, May 25, 2008
That costs how much???
Well, it has been an expensive year so far. By the end of January I had already cleared my $500 deductible with the rheumatologist, and he did nothing for me but give me an NSAID (Mobic) that did nada for me and took a bunch of xrays that showed very little. (This was prior to me figuring out that mybe I was in a serious Lyme relapse.) He ran over $1000 of blood tests and told me eveything I had told him already.......go figure.
So, I go to the OB for a regular check up(on meds) and he gets into the Lyme stuff asking how I have been, and that is where this all started....... Boom, he says go get an MRI, it has been a few years. That was $300...the neuro follow up was $100, the meds from the OB were over $100 (for one month) plus all the supplements, which cost a bundle($$???), then 2 more MRI's and the spinal that were $200, and then the Igenex bill came(testing for co-infections)........$630. Yep, that one was straight outta our pockets, as Igenex is not on insurance. The poor Mastercard has taken a beating the past couple of months.
So, I go to the OB for a regular check up(on meds) and he gets into the Lyme stuff asking how I have been, and that is where this all started....... Boom, he says go get an MRI, it has been a few years. That was $300...the neuro follow up was $100, the meds from the OB were over $100 (for one month) plus all the supplements, which cost a bundle($$???), then 2 more MRI's and the spinal that were $200, and then the Igenex bill came(testing for co-infections)........$630. Yep, that one was straight outta our pockets, as Igenex is not on insurance. The poor Mastercard has taken a beating the past couple of months.
Day 4 of Pain....uggghhhh!!
Well, I have still got that horrid spinal headache. I am on day 4, since Thursday and it is vicious. I was in church this morning and was almost brought to tears, and no it was not that moving of a service, just that painful of a headache. I was even getting a little lightheaded feeling from the intense pressure and was kinda worried I would not be able to drive. I was lucky to be just around the corner from the house though. When I came home, i fed the kids quickly and laid on the couch. Of course this helps, then I zonked out for 2.5 hours (Ken had taken the kids to Oklahoma), but it really needs to stop. I forced myself up to go to the store, we needed groceries and I had to do it when the kids were gone becuase of this headache. I made it through, and now I am back home, laying on the couch again.
Friday, May 23, 2008
Spinal Headache
They claim it is rare, but I have one. It kicked in after I left the hospital yesterday, and I guess some of the meds last night help it, but boy is it back with a vengence today. I have no caffeine in the house so I think I am off to the store shortly, then back into the bed.
Thursday, May 22, 2008
MRIs Done
Well, after 6 hours at the hospital getting the 2 MRI's done and a spinal tap I am home (finally). What a long day it has been. I had to deal with people asking questions left and right about why I was there for an MRI and spinal tap, I guess because I do not seem sick........
One doctor (NOT an LLMD) was "versing" me on how LD is not really something seen here and it was spirochete from the bordatella (ok close) class, and it mainly infected deer hunters who were around lots of deers (and ticks) where there were lots of acorns. Yes, this is really what the man said. He was very nice during it all and seemed to know how to do a spinal tap well (been doing that 30 years) but not up on LD for sure. I just had to inform him it was pretty prevalent in Texas these days and could also be from the Lone Star tick and possibly transmitted sexually as my hubby and I both have it. I still kills me when I have to defend what disease I say I have. I mean would they challenge some one who said "I have cancer"?? I do not think so........
Anyway, everyone was really nice today(surprizing in a hospital at times), although some were lacking LD knowledge.......guess we will get results in a few days.
One doctor (NOT an LLMD) was "versing" me on how LD is not really something seen here and it was spirochete from the bordatella (ok close) class, and it mainly infected deer hunters who were around lots of deers (and ticks) where there were lots of acorns. Yes, this is really what the man said. He was very nice during it all and seemed to know how to do a spinal tap well (been doing that 30 years) but not up on LD for sure. I just had to inform him it was pretty prevalent in Texas these days and could also be from the Lone Star tick and possibly transmitted sexually as my hubby and I both have it. I still kills me when I have to defend what disease I say I have. I mean would they challenge some one who said "I have cancer"?? I do not think so........
Anyway, everyone was really nice today(surprizing in a hospital at times), although some were lacking LD knowledge.......guess we will get results in a few days.
Wednesday, May 21, 2008
Today's appointment.....
went well. I mean I guess there was not much to talk about since the other MRIs are tomorrow. LLMD was just gauging how I was doing on my meds and supplements. I do not think I have seen much change yet, which it has only been 3 weeks on most of it so it is still early. He thinks I did have a "herx" reaction and that is good. Although it sucks when it is going on.....hard to deal with 2 kids when you do not want to get out of the bed because everything hurts and is tired. I was prodded at more today and more blood sucked out. He still has not heard from the last igenex test for the co-infections. That should come in any day.......
Tomorrow I will be poked (literally) for the spinal and prodded for more blood and more lovely shots of the neck and upper back.
Tomorrow I will be poked (literally) for the spinal and prodded for more blood and more lovely shots of the neck and upper back.
Tuesday, May 20, 2008
More to come.....
After visiting with the neuro today, he wants me to get an MRI of the spine and neck, and a spinal tap to rule out MS. I have several white lesions, one that was of concern since my last MRI, and the size was also an issue I guess. He knows I have Lyme disease, but honestly don't think he thinks much about it. He is going down the MS route. I think I will have a second opinion after the spinal tap.....and my appt. with LLMD tomorrow.
Anyway, I am scheduled Thursday for the tests so that should be a load of fun!!
MRI Findings from 5-12-08 per radiologist:
FINDINGS: There are several hyperintense lesions on T2-weighted imaging within the brain. The largest is located in the right parietal white matter measuring approximately 1.2 CM. Postcontrast imaging demonstrates a 7.6 mm ring enhancing lesion in this region. Other areas of abnormal signal intensity on T2 weighted imaging are primarily seen in the deep white matter on the right and left. There is a prominent area with in the left temporal white matter at the level of the temporal horns. There is also a prominent area in the medial aspect of the right temporal lobe measuring 1.6 cm x 0.9 cm. There is subtle curvilinear enhancement within this right temporal lesion and within a punctate right occipital lesion but the remaining lesions demonstrate no significant enhancement. While the ring enhancing lesion in the right parietal lobe is suspicious for metastatic disease or lymphoma and the punctate area of enhancement in the right occipital lobe is nonspecific , the enhancement pattern/lack of enhancement of the remaining lesions in this more atypical of metastatic disease or lymphoma. Multiple sclerosis should therefore be considered. Clinical correlation is suggested.
Anyway, I am scheduled Thursday for the tests so that should be a load of fun!!
MRI Findings from 5-12-08 per radiologist:
FINDINGS: There are several hyperintense lesions on T2-weighted imaging within the brain. The largest is located in the right parietal white matter measuring approximately 1.2 CM. Postcontrast imaging demonstrates a 7.6 mm ring enhancing lesion in this region. Other areas of abnormal signal intensity on T2 weighted imaging are primarily seen in the deep white matter on the right and left. There is a prominent area with in the left temporal white matter at the level of the temporal horns. There is also a prominent area in the medial aspect of the right temporal lobe measuring 1.6 cm x 0.9 cm. There is subtle curvilinear enhancement within this right temporal lesion and within a punctate right occipital lesion but the remaining lesions demonstrate no significant enhancement. While the ring enhancing lesion in the right parietal lobe is suspicious for metastatic disease or lymphoma and the punctate area of enhancement in the right occipital lobe is nonspecific , the enhancement pattern/lack of enhancement of the remaining lesions in this more atypical of metastatic disease or lymphoma. Multiple sclerosis should therefore be considered. Clinical correlation is suggested.
Saturday, May 17, 2008
Burnt Chicken Feathers
I have been experiencing alot of pains the past week or so. I am sure it is probably "herx" related. I still have a horrid cough from the bronchitis and it hurts when I get going good. I thought that was causing some pain in my lower back, but now I am not sure if it is back pain or kidney pain. I go to the neurologist on Tuesday and my LLMD on Wednesday. If it still persists, I will talk to them about it. Otherwise, I may be heading back to the pain specialist if the LLMD can't give me something to help or alleviate it. The headaches have been coming and going. I keep getting some in the right front part of my forehead. I do not know if it is psychosomatic due to the LLMD mentioning something about the right frontal lobe on the MRI report......you know I smell burnt chicken feathers, must be a tumor. (hehehehe)
Anyway, I have not told anyone but Ken and my friend Ginger about the MRI report. I want to, but I do not want to alarm anyone for something I think will be TBD related. Ken already had a bit of a time dealing with it, but I tell him everything when it comes to my medical stuff, maybe too much sometimes for a man. (hehehehe)
I have a few more days before the neuro visit, guess more to come then!
Anyway, I have not told anyone but Ken and my friend Ginger about the MRI report. I want to, but I do not want to alarm anyone for something I think will be TBD related. Ken already had a bit of a time dealing with it, but I tell him everything when it comes to my medical stuff, maybe too much sometimes for a man. (hehehehe)
I have a few more days before the neuro visit, guess more to come then!
Friday, May 16, 2008
Treatment/Supplements
I started my new treatment almost 2 weeks ago. I also started a ton of supplements which I will try to keep a running list of, and I just received 3 more in the mail today.
Morning:
200 mg Doxycycline
500 mg Ceftin
40 mg Fluoxetine
50 mg B-Complex
50 mg B-6
25 mg troche of Methylcobalamin
200-300 mg CoQ-10
1500 mg Acetyl L-Carnitine
400 mg Sam-E
1 Mag-Tab
Evening:
200mg Doxycycline
500 mg Ceftin
20 mg Lipitor
1 Mag-Tab
1200 mg Fish Oil
Morning:
200 mg Doxycycline
500 mg Ceftin
40 mg Fluoxetine
50 mg B-Complex
50 mg B-6
25 mg troche of Methylcobalamin
200-300 mg CoQ-10
1500 mg Acetyl L-Carnitine
400 mg Sam-E
1 Mag-Tab
Evening:
200mg Doxycycline
500 mg Ceftin
20 mg Lipitor
1 Mag-Tab
1200 mg Fish Oil
Wednesday, May 14, 2008
Found my old Lyme Western Blots
IgG Western Blot
18 kDa +/-
22 kDa -
23-25 kDa +
28 kDa -
30 kDa +/-
31 kDa +++
34 kDa +/-
37 kDa -
39 kDa +/-
41 kDa ++
45 kDa +/-
58 kDa +/-
66 kDa +/-
73 kDa -
83 kDa -
93 kDa +/-
IgM Western Blot
18 kDa ++
22 kDa -
23-25 kDa +
28 kDa -
30 kDa ++
31 kDa +/-
34 kDa +
37 kDa -
39 kDa +/-
41 kDa +/-
45 kDa +/-
58 kDa +/-
66 kDa +
73 kDa -
83 kda -
93 kDa +/-
18 kDa +/-
22 kDa -
23-25 kDa +
28 kDa -
30 kDa +/-
31 kDa +++
34 kDa +/-
37 kDa -
39 kDa +/-
41 kDa ++
45 kDa +/-
58 kDa +/-
66 kDa +/-
73 kDa -
83 kDa -
93 kDa +/-
IgM Western Blot
18 kDa ++
22 kDa -
23-25 kDa +
28 kDa -
30 kDa ++
31 kDa +/-
34 kDa +
37 kDa -
39 kDa +/-
41 kDa +/-
45 kDa +/-
58 kDa +/-
66 kDa +
73 kDa -
83 kda -
93 kDa +/-
Tuesday, May 13, 2008
MRI Update
LLMD called today and said he wants my MRI compared to my others from '04/'05. I guess the radiologist that read it marked possible lymphoma, metastatic disease or "other" on the report?????
We are looking into Bartonella already, which is also know as "Cat Scratch Fever" which could have some similar MRI results as these other illnesses. I have not heard back on the Igenex tests for that as of yet.......
I will be going to the neurologist next Tuesday for a consultation to compare my MRI's and see what he thinks. Of course my mind is going all over the board(and internet), but I know that what ever it is, it will be ok. I know God has a plan for me - and this is just a bump in my road!!
We are looking into Bartonella already, which is also know as "Cat Scratch Fever" which could have some similar MRI results as these other illnesses. I have not heard back on the Igenex tests for that as of yet.......
I will be going to the neurologist next Tuesday for a consultation to compare my MRI's and see what he thinks. Of course my mind is going all over the board(and internet), but I know that what ever it is, it will be ok. I know God has a plan for me - and this is just a bump in my road!!
Monday, May 12, 2008
Weird Symptom......
http://en.wikipedia.org/wiki/Lhermitte's_sign
Months (maybe upto a year ago now) ago I noticed and still have been experiencing a weird thing in my neck when I would bend my head down, I would get this sensation like a "shock" or tingle down my back and sometimes into my arms and legs. I told my back specialist about it, and so he did x-rays of my neck to see if there was a pinched nerve or disc problem there. Of course there was not......so I went on to see my chiropractor. I figured he would help me in an adjustment or know what the problem was, and yet he did not, but he tried. I get massages as well, and this did not seem to get rid of this problem either. I just got used to the idea of not really bending my head down too often to avoid this effect, since it really does not hurt, I guess I just placed it on the list of problems I deal with and cataloged it. Now flash foward to getting into more treatment with Lyme, and I ran across another person's blog who has Lyme, and he has experinced this same thing. Now I know what it is, the link above tells a little anyway. So hopefully if it really is this, I will be able to find something out on the MRI I took this morning. I follow up with my doctor on Friday, so hopefully I will know more then.
Months (maybe upto a year ago now) ago I noticed and still have been experiencing a weird thing in my neck when I would bend my head down, I would get this sensation like a "shock" or tingle down my back and sometimes into my arms and legs. I told my back specialist about it, and so he did x-rays of my neck to see if there was a pinched nerve or disc problem there. Of course there was not......so I went on to see my chiropractor. I figured he would help me in an adjustment or know what the problem was, and yet he did not, but he tried. I get massages as well, and this did not seem to get rid of this problem either. I just got used to the idea of not really bending my head down too often to avoid this effect, since it really does not hurt, I guess I just placed it on the list of problems I deal with and cataloged it. Now flash foward to getting into more treatment with Lyme, and I ran across another person's blog who has Lyme, and he has experinced this same thing. Now I know what it is, the link above tells a little anyway. So hopefully if it really is this, I will be able to find something out on the MRI I took this morning. I follow up with my doctor on Friday, so hopefully I will know more then.
Sunday, May 11, 2008
MRI in the morning
I go to have an MRI in the morning. I have not had one done since 2004 and there were undifferentiated white spots and some polyps on my sinuses. LLMD ordered the MRI with contrast. I guess we will find out if anything has changed in a few days......
Going to Louisiana.....
Today Ken decided he would look into the doctor in Louisiana. I think he was totally blown away by our GP just refusing to help us, after being his patient for 10 years almost. I will be making some calls tomorrow to get this ball rolling!!!!
UPDATE May 12th: Made appointment for Ken, will be going to Pine Valley on June 15th for appointment on the 16th.
UPDATE May 12th: Made appointment for Ken, will be going to Pine Valley on June 15th for appointment on the 16th.
Feeling Like Crap.....
Since yesterday........
I think I may be having a "herx" possibly. (http://en.wikipedia.org/wiki/Herxheimer_reaction).
Been on meds for a little over a week now and still been sick with Bronchitis too. Just feeling rundown, and like this cough is going to stay forever!! I did alot of shopping yesterday for school stuff for the kids. It was a great girls' day out with my friends, but it also made me very tired. I even had to cancel plans last night to play cards because I was not well. I think my meds worked a number on me yesterday as well as the heat. Part of the shopping was in a warehouse with no AC and it got to about 85 outside with complete sun. I nearly passed out before I paid so I left the building and went to my friend's car. I just felt horrible the rest of the evening.......I still feel rough today. It is almost like a hangover, but sadly, I have not been drinking. I did not get to sleep until 3am on Friday night, so I know that played a big part in the feeling bad all day as well. Anytime I get out of synch, it has lingering effects on me. Seems like most things do these days!!
I think I may be having a "herx" possibly. (http://en.wikipedia.org/wiki/Herxheimer_reaction).
Been on meds for a little over a week now and still been sick with Bronchitis too. Just feeling rundown, and like this cough is going to stay forever!! I did alot of shopping yesterday for school stuff for the kids. It was a great girls' day out with my friends, but it also made me very tired. I even had to cancel plans last night to play cards because I was not well. I think my meds worked a number on me yesterday as well as the heat. Part of the shopping was in a warehouse with no AC and it got to about 85 outside with complete sun. I nearly passed out before I paid so I left the building and went to my friend's car. I just felt horrible the rest of the evening.......I still feel rough today. It is almost like a hangover, but sadly, I have not been drinking. I did not get to sleep until 3am on Friday night, so I know that played a big part in the feeling bad all day as well. Anytime I get out of synch, it has lingering effects on me. Seems like most things do these days!!
Saturday, May 10, 2008
New lab results in today.....
While at the homeschool book fair today, I received a call from my doctor. Yes, he actually follows up on the weekends.....and he gave me some new lab results from last week. I am testing positive for Rocky Mountain Spotted Fever (http://www.cdc.gov/ncidod/dvrd/rmsf/Signs.htm) which I would have never been looking for....not like I was looking for Lyme either really. It is no wonder I have not felt good for so long......I have been invaded by tick borne diseases......how, I do not know!!!
Anyway, I am already on Doxy for the Lyme treatment so hopefully it will resolve the RMSF. The doctor also told me I have some other micro-organism that attaches to the cell wall...seems Doxy is good treatment for that as well. I will have to check into the exact name of that on Monday. He said it is normally not too big of a thing for regular people, but with Lyme and auto-immune problems, it is not so good. Great, something else to worry about.........well, I am still breathing right?? :)
UPDATE: May 12th
I found out the other issue I have is Mycoplasma. http://en.wikipedia.org/wiki/Mycoplasma
Anyway, I am already on Doxy for the Lyme treatment so hopefully it will resolve the RMSF. The doctor also told me I have some other micro-organism that attaches to the cell wall...seems Doxy is good treatment for that as well. I will have to check into the exact name of that on Monday. He said it is normally not too big of a thing for regular people, but with Lyme and auto-immune problems, it is not so good. Great, something else to worry about.........well, I am still breathing right?? :)
UPDATE: May 12th
I found out the other issue I have is Mycoplasma. http://en.wikipedia.org/wiki/Mycoplasma
Awake Again.......
I was not able to sleep....big surprize...so I thought I would come lay down some more past.....
In 1998 I fell and hurt my back. I learned there was old damage in the L4-5 area, some old fractures. When this happened, I could hardly walk. I began seeing a chiropractor, and still do. Over the years I have had periods where I could not hardly move due to back issues. I sit or lay on heating pads alot to help relieve the tensionin the muscles of my lower back area. The more I read, the more I think some of the back pains have been due to the Lymes. Last February, I tweaked my back and once again was not able to walk very easily or stand completely erect. I had to have cortisone shots placed in my back around the L4-5, and also an MRI showed that the L5 disc is now "obliterated" as the doctor said. I know some of my problems will be life long issues regarding my back, but I am hoping some will be relieved with the new course of treatment I am now on.
It is really sad to sit and think what this stuff does to your body when it goes untreated for so long. It is hard to believe that in today's technology, we cannot get proper diagnosis, and medical care for what initially would only be a small problem to deal with. I know over the years I have spent WAY too much money on doctors, prescriptions, and tests in order to alleviate the pains and find out what is wrong, and how to deal with it. I have had periods where I was eating pain meds just to be able to function daily so I could deal with my kids. That is no way to watch them grow up. I am ready to see some light at the end of the pain tunnel here...........
In 1998 I fell and hurt my back. I learned there was old damage in the L4-5 area, some old fractures. When this happened, I could hardly walk. I began seeing a chiropractor, and still do. Over the years I have had periods where I could not hardly move due to back issues. I sit or lay on heating pads alot to help relieve the tensionin the muscles of my lower back area. The more I read, the more I think some of the back pains have been due to the Lymes. Last February, I tweaked my back and once again was not able to walk very easily or stand completely erect. I had to have cortisone shots placed in my back around the L4-5, and also an MRI showed that the L5 disc is now "obliterated" as the doctor said. I know some of my problems will be life long issues regarding my back, but I am hoping some will be relieved with the new course of treatment I am now on.
It is really sad to sit and think what this stuff does to your body when it goes untreated for so long. It is hard to believe that in today's technology, we cannot get proper diagnosis, and medical care for what initially would only be a small problem to deal with. I know over the years I have spent WAY too much money on doctors, prescriptions, and tests in order to alleviate the pains and find out what is wrong, and how to deal with it. I have had periods where I was eating pain meds just to be able to function daily so I could deal with my kids. That is no way to watch them grow up. I am ready to see some light at the end of the pain tunnel here...........
Friday, May 9, 2008
Before 2003.....
I guess pre-2003 it is hard to really pinpoint alot of the problems I had now. I know going back to 1998 I was having severe mood swings and depression. It kind of seemed to come out of no-where. I had been married only 2 years and just bought a house so things there were doing good, except for the moods. It was causing a real problem on the marriage, so I went to the doctor about it. He is the very same doctor I see now for Lymes, but I guess no one was looking for it then, and he had not started treating it back then. I know he got into it due to family members being affected and having no where to turn for treatment themselves.
Anyway, pre-1998, I do not remember any tick bites but we did grow up camping and fishing. I was also a girl-scout and did things there. Who knows how long this has been in my body......
When I was a teenager ('89-'90 thereabouts), I started having insomnia problems. I could not sleep and it was effecting my school. I went to see my GP then and he prescribed Trazadone, to help me sleep. I took it for a while until it started to control me and needed more and more to work. I think this may have been the first signs of Lyme and no one knew it........
Anyway, pre-1998, I do not remember any tick bites but we did grow up camping and fishing. I was also a girl-scout and did things there. Who knows how long this has been in my body......
When I was a teenager ('89-'90 thereabouts), I started having insomnia problems. I could not sleep and it was effecting my school. I went to see my GP then and he prescribed Trazadone, to help me sleep. I took it for a while until it started to control me and needed more and more to work. I think this may have been the first signs of Lyme and no one knew it........
Before 2003.....
I guess pre-2003 it is hard to really pinpoint alot of the problems I had. I do know that I had severe depression and mood swing disorder. I had gone through periods of lethargy and sleeplessness, all which now I know were due to the Lymes. I have gone through several boughts of chronic respiratory infections and seems like this littlest germs would cause me to get a full blown illness.
From Aug 2001-Dec 2003, I was pregnant 3 times and had 2 beautiful baby girls. I was on medication for depression prior to 2001 and quit taking it while I was pregnant and was off of it until March 2004. That is when I had one of the worst flairs that I previously mentioned dealing with migraines before I was diagnosed.
Prior to Aug. 2001, I was on Welbutrin for depression and had been since 1998, when I really started to notice the extreme mood swings. After several years I realized it was really intense around the week before my period. I thought it was PMDD, but more reading has lead me to believe that it was probably always the Lymes. It just seems that pregnancies brought out the flairs that lead me to think something else was really wrong with me.
During all this time, since probably 1997 we had been trying to found out about some weird symptoms my husband was having. He visited every doctor imaginable......and had multiple tests done to no avail, of course. Atone point, we were scared as many thers have been by the mention of MS. We chased his problems for 8 or so years before my GYN turned us on to the possiblilty of Lymes and we were tested. My husband now has extreme problems due to the length of time it took for diagnosis and treatment. He is in a horrible spot now trying to get anyone to treat him locally. Since he is a man, my GYN cannot treat him legally and has referred us to Louisiana. We have not made that trip for him yet.........
From Aug 2001-Dec 2003, I was pregnant 3 times and had 2 beautiful baby girls. I was on medication for depression prior to 2001 and quit taking it while I was pregnant and was off of it until March 2004. That is when I had one of the worst flairs that I previously mentioned dealing with migraines before I was diagnosed.
Prior to Aug. 2001, I was on Welbutrin for depression and had been since 1998, when I really started to notice the extreme mood swings. After several years I realized it was really intense around the week before my period. I thought it was PMDD, but more reading has lead me to believe that it was probably always the Lymes. It just seems that pregnancies brought out the flairs that lead me to think something else was really wrong with me.
During all this time, since probably 1997 we had been trying to found out about some weird symptoms my husband was having. He visited every doctor imaginable......and had multiple tests done to no avail, of course. Atone point, we were scared as many thers have been by the mention of MS. We chased his problems for 8 or so years before my GYN turned us on to the possiblilty of Lymes and we were tested. My husband now has extreme problems due to the length of time it took for diagnosis and treatment. He is in a horrible spot now trying to get anyone to treat him locally. Since he is a man, my GYN cannot treat him legally and has referred us to Louisiana. We have not made that trip for him yet.........
Wednesday, May 7, 2008
Back to 2003
Well, in 2003 I was pregnant with Kennedy. I started having these HORRIBLE migraine headaches and since I was pregnant, there was not much I could do about them. After a few months they just kinda went away. Flash forward to having a new baby and a 2 year old, and dealing with daily migraines, and daily was for almost all of the day. I was glad to have kids that slept, so as soon as nap time came around, that is where I was as well.....taking a nap to get away from the light and headache. I finally went to a neurologist and he did an MRI. The found several undifferentiated white spots on my brain which can go along with migraines. Still, no real answer as to why this was happening. He gave me a medicine called Migrin for when I felt them coming on, was like a sedative. So, I had to sleep after taking one of those, but it worked well. The Neurologist also did some blood work and found I had a weird ANA level, which could have been Lupus. He then sent me to the first rheumatolgist I saw. He in turn did tons of blood work and told me the places (which I knew) where he could see arthritis already......I was not 29 year sold yet. He also found that I have a blood clotting disorder call Antiphospholipid Antibody Syndrome or APS. Still, really not pointing to my original issues, just finding out I have more wrong with me!! Somewhere in this time period, I saw Dr. Wilson and he suggested I might look into Lymes testing. He referred me to Igenex Labs but I was having a problem trying to find someone who would help me with the blood draw. I asked that first Rheumatolgist for his help, and he would not do it. So, I actually had a follow up with another Rheumatologist who labeled me with Fibromyalgia.....he also laughed at me for suggesting it could be Lymes. Needless to say I did not continue on as his patient. Finally Dr. Wilson suggested someone who had become interested in helping out Lymes patients, and he assisted with the initial Igenex Blood draw. That was Dr. Grodsin...he actually helped get Ken tested as well (he is also Lymes positive but that is an even longer story) and started us on our first round of antibiotics. His bedside manner left us lacking and his treatment fizzled out fast......we have both been without treatment since then.
Tuesday, May 6, 2008
Great Read about Texas Patients with Lymes
http://www.standupforlyme.org/about/crisis_of_care.html
May has been named the Lyme Disease Awareness month in Texas!!
May has been named the Lyme Disease Awareness month in Texas!!
Backing to the beginning.....???
Before this last doctor's visit I had been feeling really bad. I was waking up with hands I could hardly use, like I had been clinching a fist all night in my sleep. I had several episodes where my legs would be numb or feel like parts were asleep, my right foot is almost always numb, and the other one is sometimes. Both hands have their moments as well......I have also lost a lot of grip in my left hand, dropping things all the time. I decided to go see another rheumatologist that came highly recommended. He ran every blood test imaginable (about $1000 worth) and told me everything I already knew. He did not even bat an eye when I told him I was Lymes positive. He did not think the problems I had been dealing with were due to that. I had a feeling I was in a serious Lymes relapse, but did not really know where to seek help. It is horrible when you can't find a doctor to treat you, or one knowledgable to do so. That doctor classified me in a catagory called UCTD or undifferentiated connective tissue disease...to me meaning he has no idea what I have. Again, no mention from him about or pointing to Lymes.
Prior to this visit, I have bounced in and out of my GP's office for respiratory infections like crazy. My immune system is just a mess. The slightest sick person around throws me into a full blown case of bronchitis. I have had it 3 times this year (2008) alone. Other problems have had me at the Gyno for bladder/uniary tract infections, to the back doctor for all kinds of pain and neuropathy I thought were nerves being pinched or something. Looks more like it may be Lymes related, although I do have other back problems that are all on their own!!
Prior to this visit, I have bounced in and out of my GP's office for respiratory infections like crazy. My immune system is just a mess. The slightest sick person around throws me into a full blown case of bronchitis. I have had it 3 times this year (2008) alone. Other problems have had me at the Gyno for bladder/uniary tract infections, to the back doctor for all kinds of pain and neuropathy I thought were nerves being pinched or something. Looks more like it may be Lymes related, although I do have other back problems that are all on their own!!
Where to start?? Last week maybe???
I am going to start this out and have to back into most of my story. You see, I have no idea where it actually starts......odd as that may seem. If you know anything about Lyme Disease, you will understand that. If you do not, maybe my blog will help you understand, or give you an interest to look into it further for yourself.........
Friday, May 2, 2008
Had an appointment with Dr. Ronald Wilson who is now taking over my treatment for Lymes. He has made a point to become versed in the treament of Lymes because he sees how bad it is needed. He went over the patient survey with me and we decided to start a very aggressive treatment regimine . I am taking 400mg of Doxycycline, 1000mg of Ceftin and building up a very intense suppliment defense as well with B-Complex, B-6, Probiotics, MagTabs, CoQ10, and several other things. I still need to pick up a few of the suppliments, but have been taking the scripts since Friday. I want to blog and see if I can start to notice when it is a begin to feel better.
Now some back history:
I have known Dr. Wilson since I was 15 years old, he is my Gynocologist, and delivered both of my kids. We go way back!! He is actually the person who pointed me in the direction of even getting tested for Lymes, back in 2004. Other doctors spent tons of time and money (of mine) doing tests and never really finding the route of my problems. Hence the name given to lymes is "The Great Imitator". At that time in 2004, I was having acute DAILY migraines and just not feeling well in general, after seeing a neurologist and rheumatologist(not very helpful at all), and then a second rheumatologist(rude), I must have had an appointment with Dr. Wilson and we began discussing my symptoms and my husband's. (BTW, he had been going through the doctor game as well at that point for several years!!) One Rheumatologist said he would just consider me to be in that group of people who have "Fibromyalgia" since there was nothing he could find wrong at this point. He laughed at me when I even mentioned maybe we should look at Lymes testing - no one wanted to help me get the testing taken care of, mostly because they do not think Lymes is prevalent in Texas. We finally thougth we had a doctor to help us with testing and treatment in early 2005. Dr. Grodsin met with us both, and prescribed uo doxycycline, and Biaxin. We never saw him again. I think his interest in helping us fizzled quickly and we decided not to continue on with him. The first rounds of antibiotics seemed to clear up somethings for me. The rest of them were long term damage type situations never really resolved. I have been in a relapse for a while and feeling like death warmed over for the most part.
That is why I am doing this now, to chronicle my disease and treatment. I am doing it mostly for myself, but knowing how hard it is to find a doctor who will help you (close by) and one who really believes in having a firm treatment plan seems to be few and far between for most people. I have been blessed with an awesome doctor and thank God for him!!!
Back to my meds.....
Started taking them on May 2nd, and the first round about made me sick. I had been sick with bronchitis (3rd time in so many months) and not eating much. Took all my meds on a very empty stomach and was sick the next few hours. Have learned that I must take them ALL with food. Currently I am up to 9 pills a day, and that will be increasing once I get a hold of all the suppliments I have been told to start taking. I had to go buy me a pill divider that had an AM/PM section since i take them through out the day. In my old age (and forgetful Lymes brain) I had to do this for myself so I would not forget anything. And I was tired of carting around all those bottles in my purse!!
I guess I will end for now. I will back further into more medical mysteries as we go along.
Friday, May 2, 2008
Had an appointment with Dr. Ronald Wilson who is now taking over my treatment for Lymes. He has made a point to become versed in the treament of Lymes because he sees how bad it is needed. He went over the patient survey with me and we decided to start a very aggressive treatment regimine . I am taking 400mg of Doxycycline, 1000mg of Ceftin and building up a very intense suppliment defense as well with B-Complex, B-6, Probiotics, MagTabs, CoQ10, and several other things. I still need to pick up a few of the suppliments, but have been taking the scripts since Friday. I want to blog and see if I can start to notice when it is a begin to feel better.
Now some back history:
I have known Dr. Wilson since I was 15 years old, he is my Gynocologist, and delivered both of my kids. We go way back!! He is actually the person who pointed me in the direction of even getting tested for Lymes, back in 2004. Other doctors spent tons of time and money (of mine) doing tests and never really finding the route of my problems. Hence the name given to lymes is "The Great Imitator". At that time in 2004, I was having acute DAILY migraines and just not feeling well in general, after seeing a neurologist and rheumatologist(not very helpful at all), and then a second rheumatologist(rude), I must have had an appointment with Dr. Wilson and we began discussing my symptoms and my husband's. (BTW, he had been going through the doctor game as well at that point for several years!!) One Rheumatologist said he would just consider me to be in that group of people who have "Fibromyalgia" since there was nothing he could find wrong at this point. He laughed at me when I even mentioned maybe we should look at Lymes testing - no one wanted to help me get the testing taken care of, mostly because they do not think Lymes is prevalent in Texas. We finally thougth we had a doctor to help us with testing and treatment in early 2005. Dr. Grodsin met with us both, and prescribed uo doxycycline, and Biaxin. We never saw him again. I think his interest in helping us fizzled quickly and we decided not to continue on with him. The first rounds of antibiotics seemed to clear up somethings for me. The rest of them were long term damage type situations never really resolved. I have been in a relapse for a while and feeling like death warmed over for the most part.
That is why I am doing this now, to chronicle my disease and treatment. I am doing it mostly for myself, but knowing how hard it is to find a doctor who will help you (close by) and one who really believes in having a firm treatment plan seems to be few and far between for most people. I have been blessed with an awesome doctor and thank God for him!!!
Back to my meds.....
Started taking them on May 2nd, and the first round about made me sick. I had been sick with bronchitis (3rd time in so many months) and not eating much. Took all my meds on a very empty stomach and was sick the next few hours. Have learned that I must take them ALL with food. Currently I am up to 9 pills a day, and that will be increasing once I get a hold of all the suppliments I have been told to start taking. I had to go buy me a pill divider that had an AM/PM section since i take them through out the day. In my old age (and forgetful Lymes brain) I had to do this for myself so I would not forget anything. And I was tired of carting around all those bottles in my purse!!
I guess I will end for now. I will back further into more medical mysteries as we go along.
Subscribe to:
Posts (Atom)