Africa will have to wait.....

for never probably........

I spoke to my neurologist about the vaccines I need to get to go to Africa, and she said she did not think it would be a good idea. Considering the active lesions, my immune system being a wreck, and being on new meds, it is probably not a good time to add live vaccines to the mix. She was particularly concerned about the Malaria vaccine. The old neurologist said he wanted me to be on the meds for a while, then do another MRI to see what was going on, then he would decide about the vaccines. The new neuro said it would not change her thoughts on the vaccines either way. I prayed on it, and when I woke up there was an email from Ken telling me he did not want to think about the possible complications from the vaccines and that taking that chance was not good in his mind. So there you go.......

I retracted my position for the trip and told the pastors I could not go. I asked that they give the money I have raised already to another lady in the church who I have been talking about the trip with. At least I could bless someone from the work I did to raise that money!!

Oh the pain....

I started taking Synthroid on Saturday morning and along with it (I think) came a nasty little migraine. I have had a headache for 2 straight dats. So far today it is not here (Thank God) but it was really bad yesterday. I was given a very expensive Migraine medicine that did not even touch it. That medicine was way too expensive not to work like a magic wand!!

Anyway, other than the headaches, I have been feeling pretty good. I upped my Betaseron dose on Friday night (might have caused the headaches) so it is hard to know what caused the headaches.

Started Synthroid Today

So hopefully I will see some results from this~! I have gained over 30 pounds in the past 3-6 months and I am not happy about it, but now I know why! Hopefully the Sythroid will help me lose the weight and get to feeling better energy wise. The past week has been pretty good, but long term it should really help.

I woke up with a headache this morning and did not sleep well last night. I upped my Betaseron titration last night and I forgot to take a sleeping pill. I do not know what it is about those shots, but I do not sleep well on the nights I take them without a sleeping pill. I guess I will have to make up for that tonight or today sometime! :)

Visit w LLMD Today

I went to see him and he was pleased with all my new info. He was so happy to see that I found a neuro that believes in Lyme in Texas. She was very open to the treatment he has me on and told me to stick with it. He said he was going to be giving her a call as he needs a local neuro for his Lyme patients. He also told me I must be speeding or something today - I feel awesome and happy and it is a very good day. Probably the best one I have had in 6-8 months!! And that was just how I woke up today! Go figure!!!

Anyway, he gave me a prescription for Synthroid to get started on ASAP. He was floored that the old neuro did not call me as soon as he had the results and have me on meds already. I told him that is why he was fired, and that he did not return my phone calls. He did not seem too worried about the blood pressure since it is not staying high, just goes high once in a while. It probably is from the steroids as they take about 6 weeks to clear your body. I go back to see him in a month and we will see how things are then. He needs to start treating the babesia and erlichiosis with a different antibiotic but he wanted to talk to the neuro first.

New Neuro....

Well today I met with my new neurologist and she is a keeper. I like her personality...... She knows the specialist in Houston I saw and she says he has no personality...I agree. She seems to be a stright forward type person which I like to have in a doctor!



Anyway, she is running an EEG on July 21st, sometime I will have another MRI of the lumbar region on my back, and she wants to do an MRA, and several tests called Evoked Potentials. She is also going to have some congitive evaluation done so we can get a good baseline of where I am at now, and have a comparison for the future.



Currently she gave me a few more meds (whoooopppeeeee) and says to stay on the Betaseron. She wants to follow me on this for a while. She thinks my MS is an aggressive form, but it is still classifed as Relasping Remitting MS. She wants more MRI's done but does not think my insurance will pay for some since I had some done back in May.



I am off to see the LLMD tomorrow. New Neuro thinks I do have both MS and Lyme and she wants me to keep up on the treatment with LLMD. I also have to get him to look into the Thyroid issues and talk about my blood pressure. It was 153/107 today when they checked it in the office. last night it was 104/68 which is (low) normal for me......don't know what today was about!

She is also talking about a treatment called IVIg. I think she will talk more about that after I get through all these tests mentioned above.

And Now........Thyroid Issues

So today I called the (fired) neuro and asked about the blood work he had done on the 10th (today is the 24th right?) and he said I was normal on the B12 levels, and that my thyroid TSH level was 8.4. They want this to be .5 to 3.0...NOT 8.4. Just another fun thing to add to my already full plate in the realm of my medical situation......

So with the history in my family of thyroid (mom had thyroid cancer about 4 years ago and grandmom had hypo & hyper-active thyroidism) I do not like the looks of this new development!!

I will find out more Thursday when I have a follow up with my ob/gyn/LLMD, and the new neurologist.

Feeling Better!!

I think I am completely through my most recent episode with MS. I started feeling almost normal on Saturday and since then I have felt pretty good. My energy levels have been good and I have actually been able to get out and about. Today we are actually doing school - it has been a little while since we did an actual full day since I have been feeling bad.

Hopefully there will be a long time before my next relapse!!!

Great Day!!

Today was a great day!! I feel like I have begun to come out of a fog. I hope it continues to improve!! I went to a friend's daughter's birthday, out to eat with the kids, and then went to church, and over to a friend's house to play cards. I have not done so much in one day for the past few weeks, I was not able to due to the fatigue. It was nice to get out and do something for a change. It is hard to explain to someone how it feels when you are dealing with so many things at once. At one point this past week, I felt like I was not in my own body. How strange that sounds, but it is the best I can do to explain it......it reminds me of that old commercial for cold medicine talking about "medicine head" and the feeling like your head was a helium balloon that was drifting out on it's own away from your body. That kinda comes close to the way I have been feeling, sort of......

Anyway, it is almost midnight, and I have been going all day. I have had energy and felt good physically with out any meds all day. I came home and took my Betaseron for the day. I hope I have gotten past the flu-like feelings it has been giving me!!!

What is normal??

I wonder if feeling normal will come again. I have been feeling bad for so long, I do not know exactly what normal is any more. I tire so easy now and it seems like it came on so sudden. I really have been feeling bad since December or so, with some days better than others. I know this is typical for most people (it is life right?) but the level of fatigue is what gets me (literally). I know once I get used to the new meds I will probably feel alot better and my energy will be back hopefully. I want to see people and get out of the house. I like to dwell in my cave (when I want to) but when I want to do something, I like being able to go an do it - immediately!! :)

MS Hug?

This is a strange sensation to say the least. I feel like I have a constrictor wrapped around my chest at times and it gets hard to breathe. I thought it was a residual from bronchitis and it was just hanging on, but it seems that it may be the "MS Hug" as they call it.

I finished the steroid treatment yesterday and I think I am in somewhat of a withdrawal state now. It has been a weird day ......almost like I was not in my own body, as weird as that sounds.

I just took my 3rd round of Betaseron last night as well and that may be part of the weird feelings too. You can get a flu-like reaction for the first several months of treatment until your body gets used to the new meds. I know I feel like I could crawl under a rock and sleep for 6 months straight for sure.....I hate feeling like I cannot go anywhere since I am so sleepy and do not know how long I will be able to stay alert. It is definitely not fun!!

Today was my last.....

dose of Acthar gel. I am glad that is over. I am so bruised on my hips and legs from all the shots!! I bruise too easily!!

Anyway, I have felt pretty good since I have been taking them. More energy and not needed to nap as much. We spent about 15 hours in the car in 2 days going to Louisiana and back for Ken's appointment with the LLMD. We only had to stay one night and they sent us home with tons of samples and stuff for Ken to try out. Hopefully we will be able to continue that relationship on the phone as that drive sucks!

Steroids....

are causing my BP to jump to new heights at night. I checked it late last night and it was 151/90 which is as high as I have ever seen it. I checked again this morning and it was normal, 121/77 which is about where I reside under normal circumstances.

I called to neuro and he did not bother to call me back 2 days in a row - one day about test results and once about the BP. I am glad I am going to see the new one in a few weeks. I do not like not having returned calls when I am on a new med!!

First Betaseron Treatment Down

Well I had my training with a really sweet nurse today I had my first injection of my disease modifying drug. It was shot in the stomach and it was fairly simple to deal with....and not painful at all. I was kinda freaked out by the thought at first, but she said it actually was the better place of all of them. Ken learned to do it for me on the back of my arm and butt so that was good as well. you have to rotate the areas so you do not have site reactions and necrosis of the skin.

All in all, the past 3 days have been good.....I am a little tried today, but we have been going all day!!

Day 2 cont'd

Well I took a bath, pretty warm one, and I do not know if that set me off or if it is a steroid side effect, but I was laying in bed about an hour later and I noticed I felt flush in my face. Ken laid his head on my chest for a minute and asked me how long I had been laying there.....at that point was like an hour reading. He said it sounded like my heart was about to jump outta my chest. I checked my blood pressure and it was high as it had ever been...143/79. I generally sit at 120/60 or 120/70. I never even had high BP while I was pregnant. Guess I need to call the doctor tomorrow to see what they say. I thought this was a pretty good day.......hmmmmp

Day 2 with Acthar Gel

I did my 2nd injection of Acthar gel today and it burned a little. I did it in the left thigh today and that one is never numb so it was a little more painful, but still nothing too severe. 5 more shots to go and this treatment will be done.

I have had a pretty busy day and I have felt very good for most of it. I am getting a little tired right now and may need a short nap soon. All in all though the past 2 days have been good ones!!

I should get the Betaseron in the mail tomorrow and when the nurse comes to train me on it, I will get started on that every other day.

I have another neuro appointment with a new doctor on the 26th and if it goes well, I think I will switch to her practice. I need someone that will listen and not be wishywashy either.

Should it be the MSnews now?

I have started treatment for the MS now. I gave myself my first injection of Acthar gel today and it was not as bad as the anticipation. I am fairly well educated in the medical field (I watch ER, Gray's, and many TLC & Discovery Health shows) and so I figured I would have no problem doing this myself. Ok, well I tried to get training and it was just not going at the speed I wanted it taken care of, so I was told over the phone how to do it by the prescribing Dr.'s nurse. I had also already watched a video about subcutaneous injections for Betaseron, which I will be starting soon, and felt pretty comfortable with it. It actually was not bad. I did it in the thigh and did not even flinch. The kids watched me do it from across the room (after we had needle education 101) and then I just did it. I have a pretty high pain tolerance but usually CAN NOT watch even when they draw my blood so this was a pretty pleasant experience.......as far as self injections can be I guess. :)

Frikkin' Tired......

of being tired!!! Unfortunately it is a symptom/side effect of my diseases, and it is really kicking my butt here lately. I MUST take a nap every day or I cannot keep my eyes open. I love to nap, don't get me wrong, but I also want to be able to get out of the house and do stuff with the kids!!

Today I got on a coughing spell (still trying to clear the reminants of the bronchitis) and hacked all day almost. My throat is sore and scratchy and hoarse now. I thought if it got any worse I was going to be heading to the ER. I got to the point where Iwas gasping for air and could not get a good breath. Not Fun!!!

I received the Acthar today in a cooler delivered by FedEx. I have all the stuff I need except the training. Guess I will call on that tomorrow. I also did not hear about the Betaseron yet......

I did get a huge box of supplements today I had ordered last week. Kinda like Christmas with all the packages coming, just wished it was someting more fun to open!!

Delivery Today.....

I should be receiving a delivery anytime with the Acthar Gel injections. I am nervous about taking it, but I am willing to see if it will help me out, and pray it does not cause me any problems. If this is truly Lyme and MS, I do not know what to expect. Supposedly Lyme does not make friends with cortisteroids.......I guess we will see in a few days.

I should also have a nurse coming to teach me how to do the injections myself. The Betaseron will be coming soon as well, as it was ordered yesterday.


The neuro also ran more bloodtests yesterday to check my thyroid levels and my B-12 levels just to make sure there was nothing going on there. He said it would not change anything as far as he is concerned, but he wanted to have it done since it has not been done to date (as far as we could tell from all the reports I had copies of).

Neurologist Appointment

Today I have my neurologist appointment to get my Betaseron started. Do not know if I will have it today or have to order it and wait until it gets here. More on this later.......

Weekend.....

It has been a good weekend. It was such a long week and I was really worn down. I went and had a very relaxing massage on Friday at Massage Envy in Frisco, then went toThe Cure on Friday night. My body is now hurting because all I did this weekend, but it was all good.

I go to see the neuro tomorrow to get my Betaseron started. I finally had a small teary breakdown one day last week when ken came home from work. I do not think it was the diagnosis in as much as the confusion over the dual diagnosis(MS & Lyme) and treatment since they are contradictive to each other.

Amid the quiet....

of the house as I sit alone, I have been contemplating what path I should take.

Logic leads me to think that I have MS, and possibly Lyme(and all the co-infections) TOO.

I read that there are things(within medical tests) I have presently that indicate MS, that do not show up (as far as I can research) in Lyme. I know that Lyme is the "Great Imitator" but can it mimic so well as to hide from 2 neurologists and only be seen by my one OB/gyno/Lyme specialist??? I do not know if my loyalty to the doctor I have seen for 18 years is what is pulling me to doubt the other 2 doctors.....or if knowing that MS is such a severe diagnosis that I want it to be the other.

Sadly in my heart, I feel it is both, and treatment is a difficult situation to deal with then. I am conflicted about this more then the diagnosis of either disease I think.......

Dear Lord, give me the strength and wisdom I know you hold for me to make this decision and know what to do with the information I have been given. Give me peace, and help me work though this situation and medical issue as your will sees to be done. Give my friends and family strength they need to support me and understand the difficult time that I am currently having and may continue to have down the road. You have blessed me with great friends Lord, and a wonderful family! Thank you for all the things you do for us in our lives and the blessings you bestow upon us all, even in times that we may not understand. In your son's precious name, Amen!

CONFUSION!!

So, I fly to Houston today to see the MS Specialist that is supposed to know about Lyme. He started in on the "no lyme in Texas" spiel. Frustrating.......

He says all he sees is pointing to MS.....he looks at the Igenex reports and says there is not enough there to consider Lyme, that I needed to have the CSF checked for Lyme titer, which had never been done(so I/we thought); he also said the MRI's are showing him seriously active MS lesions (LLMD says he is seeing NOTHING but Lyme, no MS). I got home and read up on some things and spoke to the local neuro and he told me he did have the b Lyme checked on the CSF and it was negative(want to talk that over with the LLMD). I found a site today that had some info I think is interesting. It also points more towards a definite MS diagnosis.

I thought I may have found a local neuro that used to be a Lyme specialist who I could run some of this by for possible help or direction, but I do not know if she will see me. Waiting, in limbo.....

Also called the LLMD also today to see what his thought was on the CFS being nefgative and the aforementioned site info as well. Still waiting on him to call back as well. Limbo......again......

I do not want a definite diagnosis of anything debilitating, but I just want to know what the heck my body is doing.......it is so frustrating to be caught between 2 diseases that have no 100% diagnositic tests to tell you what is going on. I feel pulled between 2 doctors who are routing for their specialty to be the "winner" and I am stuck in the middle of it all not knowing what to do. The LLMD says do not do steroids as it is a trigger for Lyme, and NN(new neuro) says I should start steroids right away. ON(old neuro) says I should start Avonex treatment ASAP, and NN says he thinks it is not that great and I should start Betaseron ASAP,.......what to do, what to do????

Houston Here I Come

Well, I am off to Houston in the wee hours of the morning. I have tons of reports to let Dr. Brod see and hope that he is really an LLMD. My LLMD called today and said he feels it is NOT MS and everything is LD. He was looking over some reports I dropped off copies of, but he did not have the last 2 MRI's showing the Lhermitte's sign. He said most of what he was seeing was non-specific and could be from LD damage. I told him I was seeing this specialist tomorrow and we would see what he thought since he was supposed to have treated LD as well.

It makes you really sit and think that there must be some sort of tie between these disease like LM, MS, Parkinsons, ALS, and all the others that get lumped in these groups. Maybe bacteria really cause all of them, but if not caught early enough, the damage is the long term problem. With all of the differing ideas on treatment and diagnosis of LD and MS, it seems there would be something similar linking them. Just my theory though.......

Irony....??

I think it is a bit funny or interesting or ironic that about a month ago I volunteered to help at the rest stop Frito Lay sponsored for the MS 150 Frisco to Ft. Worth. Our friend Melissa was diagnosed last year and another friend (Kevin) was riding in the 150 in her honor. We went and Ken DJ'd the music at the stop and I helped direct bike traffic and said "thank you" to many people who came through the stop for several hours. It was great to see so many people riding for a cause like this. There was over 3200 people who rode in the 150 this year - how awesome is that????? Next year Ken plans on riding on the Frito Lay team, "Cheesy Riders".