Omg...i Might Be On To Something

[DingoGirl]

Adam and I had some champagne last night. BAD idea. I can't get out of bed today. Sometimes I can tolerate a little wine, sometimes I can't. I need to get it through my thick skull that the times I can't tolerate it makes it worth never having it! You'd have thought I drank a case of it as bad as I feel!!

ugh....champagne almost ALWAYS gives me a headache whereas wine does not. Does wine make you feel the same say? oh and I LOVE champagne....but rarely drink it.

Susan.....guess what.....Yes, we all know that I'm a procrastinator and have some type of envelope/mail phobia .....*but* I have handed over your envelope to my mom. It is *guaranteed* to be mailed on Monday morning.

Oh....thats great that the bosses arent hovering over you anymore.....adding to your stress. I hope they've gotten over trying to stifle your personality....I dont think its possible. They would just have to let you be you and be thankful that they've got some good help in their store.

Rachel - envelope phobia Thanks Cheryl!

I better stop talking about my blanket so much....my mom was making fun of me...calling it my "blankie".

in my house, I couldn't say blankie as a baby so I called it a "bobo." Well, we also sleep with fans on in our family - my dad could NOT sleep without white noise (neither can I) and so the fan was called a security blanket and then of course.....BOBO. So, the fan is called a bobo, I have about four of them and some traveling bobos also, and all my friends call the fan a bobo now. I LOVE my bobos.

One day I got diarreah though. Scott wants us to spell out the words so sorry to be so graphic.

um, I did not get this memo.......

thanks for the birthday wishes, everyone. It was a good day.

Hi Rinne!! nice to see you, I was worried! how fun, spoiling the grandbaby!

Hi Donna! It will be nice to have you back also.

and Julie! I was worried about you also - - good to see you!

and hello to everyone else.

[CarlaB]

ugh....champagne almost ALWAYS gives me a headache whereas wine does not. Does wine make you feel the same say? oh and I LOVE champagne....but rarely drink it.

I've never had a headache from alcohol ... this is not the same as a hangover, it's from the Lyme -- more like intesified symptoms. Sometimes I can drink a little, sometimes I can't. Sometimes even one or two glasses will make me ill for days ... I just get stupid and forget!! Champagne was usually safe, but I don't think I can tolerate anything anymore. I had a couple glasses of wine at Thanksgiving, and this summer when I visited my grandma ... but then at other times, it gets me. I just need to avoid it entirely. It's very difficult because both our families are big social drinkers ...

[Rachel--24]

After ovulation your temperature rises 4 tenths of a degree ... it's called the luteal phase. (I used to teach natural family planning). I'd bet the rise in temp. is what causes the herx. Just a guess.

Hmmm....I think my symptoms worsen before and during ovulation....but then again...maybe I'm not knowing exactly when I'm ovulating.

I bought a book on all this stuff when I was trying to plan getting pregnant but then I got sick weeks later so never actually read much of the book....I'm pretty clueless about my "cycle".

Anyways I wonder if increasing thyroid meds would cause a herx??? Omg....this would make sooo much sense. After my RAI....I obviously went Hypothyroid and had to get on meds. Well....the Endo. wanted me to start out low and gradually increase. With every increase I got worse for a couple weeks.

When I got to my correct dose I still didnt feel good (obviously) so kept raising it higher to see if anything would change. Again.....everytime I increased....major worsening of symptoms.....especially with the sensitivities.

I kept asking the endo. if it was normal to get horrible reactions for 2 weeks everytime I increased my dose. I would be in so much pain, depressed, reactive, etc. He would always look at me like he had NO CLUE what the heck I was talking about. He would say..."No.....its not normal.....I've been doing this for 30 years and none of what you are experiencing is thyroid related." Of course I would not listen and kept playing with my doses.

My Endo. would say....."I don't know whats going on with you....you are the "odd bird".

I did get to a point where I absolutely DREADED increasing my meds....horrible horrible symptoms. I always thought it was my body getting adjusted to the new dose.

The Endo. kept saying "NO...this is not normal".

Hmmmmm....I wonder if a raised body temp from increased thyroid would cause a herx???

I made myself go Hyper on the meds a couple of times and I got REALLY sick...the reason I was trying to go hyper was because I was freezing all the time.....I wanted to be warm again like when I was healthy and had overactive thyroid.

Anyways whenever I'd go hyper I would STILL be freezing. Could the body temp be raised enough to cause a herx but yet I'm still cold??

This could be the reason for those dreaded 2 week episodes.

[CarlaB]

Hmmm....I think my symptoms worsen before and during ovulation....but then again...maybe I'm not knowing exactly when I'm ovulating.

Ovulation would be about 14 days before the start of menstruation.

I would bet all your thyroid difficulties were probably due to the Lyme in some way.

I am starting to wish I felt the cycles ... I'm just feeling like garbage all the time!! Now the rash I usually get on my hairline is also on my arms and legs. Just little red, itchy dots. Not all lumped together, just scattered around my arms and legs ... just a few of them. Have them on my hairline, too. I'll be glad to see the doc in January.

[Rachel--24]

I am starting to wish I felt the cycles ... I'm just feeling like garbage all the time!!

I feel like garbage most of the time too....just gets worse.....you're not missing out by not having flare-ups...trust me on that.

[happygirl]

x

[AndreaB]

Oh Laura.....I'm so sorry.

I hope you feel better by morning.

I've been reading everyone....just been busier lately.

Love you all.

[happygirl]

x

[Rachel--24]

Laura....I'm sorry you're feeling so bad. Dont be so hard on yourself though....it happens to all of us....tomorrow will be better. Plus.....you have Eric there now....so there is still reason to smile even on the worst of days.

[CarlaB]

I'm sorry your feeling bad, Laura.

[Rachel--24]

Ok...talk about going baaaaaack....I went WAY back this time. I found my very first post EVER on a message board....it was a thyroid board....heres my post.

Carla....this is in regards to our discussion about herxing....

Hi, this is my first post hopefully someone can help me out. I am 33 and 2 years ago I had RAI for Graves. Since going Hypo I have not felt right and have suffered many symptoms despite "normal" lab results. Within 3 months of starting T4 I had achieved normal levels and my Endo dismissed my problems as not being Thyroid related. In the last 2 years I've had all kinds of tests for different diseases and everything comes back normal. I have all the classic Hypo symptoms, puffy eyes and face, fluid retention, brittle hair thats falling out, muscle & joint pain to name a few. However unlike most Hypo's I am losing weight rather than gaining. When healthy I weighed 120 now I'm about 105 and that includes bloating and fluid retention. Has anyone ever heard of being Hypo and underweight?? Ive experienced food allergies and am taking antifulngal meds for Candida. I was on Levothroid .075 and my TSH was all over the place ranging from .9 to 4.2 within 3 weeks time. My doc said this was fine since I was within the normal range. I was having difficulty concentrating and my memory was pretty bad. I increased my dose on my own in Nov. up to .1 and I noticed some improvement but still not great. I'm confused because whenever I increase my dose I experience a worsening of HYPO symptoms (especially the first 2 weeks). Does this happen to anybody else? When I put all of my test results together I notice a pattern that even though I'm increasing my T4 my T3 seems to be dropping but it is still within normal limits. My last labs looked like this:

TSH 1.1 (.5-5.5)

FT4 1.6 (.9-1.8)

Total t3 101 (70-200)

While on .075 my T3 was closer to 150 but now it has dropped. My doctor never tests Free T3, I'm not sure why.

I confessed to my doc that I had increased my meds and since I have no signs of going Hyper I talked him into adding T3. I have been taking Cytomel for 2 1/2 weeks now and as usual the first two weeks were hell and I felt more Hypo than ever very lethargic and staying in bed all day. Now I'm doing better but havent noticed any great improvement. Has anyone else tried t4/t3. Should I have noticed some improvement by now? I have 4 more weeks till I can take test. Sorry so many questions but its been 2 years since I felt normal and I've been on disibility for over 1 year because my symptoms are so bad. My Endo. says I'm the "odd bird" because in his 22 years experience he hasnt encountered someone with so many problems. I find this hard to believe since all of my symptoms are HYPO symptoms except for the weight loss. Any advise is welcome.

Thanks,

Rachel

I really think maybe I was herxing or something. Theres no way I should have been going through that everytime I increased my dose. I wrote that my symptoms got worse everytime I increased and that I was lethargic and staying in bed all day.

Nobody else goes through hell just because they upped their dose a little bit....

Man.....I look back and think...."How dumb was I????"

[CarlaB]

Don't forget, it's easy to look back clearly, it's not so clear when you're living it. I look back and can't believe I thought this was normal. I had times where for months on end I couldn't get out of bed and I thought it was normal. I couldn't hold a job during those times. I guess it wouldn't have mattered anyway because I honestly don't think it would have been possible for me to get diagnosed without the internet! The internet sure has made the world smaller and more research available!!

It doesn't seem normal for you to feel worse when you raised the dosage ... shouldn't you have had MORE energy?

[Rachel--24]

It doesn't seem normal for you to feel worse when you raised the dosage ... shouldn't you have had MORE energy?

Yeah...thats why I was confused.

The fatigue, depression, memory problems, joint pains, muscle aches...every symptom I had I was attributing to being Hypo....even though I really wasnt Hypo....my labs were normal. All I knew was that I had thyroid disease, they nuked my thyroid and my symptoms matched those on a hypothyroid list. So I just thought I wasnt on the right dose.

I couldnt understand why I was losing weight though and yeah...when I increased I should have gotten more energy and I should have warmed up....but noooo....in my words I was getting more Hypo??? How is that even possible??

I actually ended up overdosing on the T3 I had started taking when I wrote all that.....and yeah....I got more HYPO.

OMG...my Endo. had freaked out on me cuz I took so much T3 (trying to get warm) that my labs were unbelievably high...SCARY high....and there I was telling him "But...I still feel Hypo....I'm not even a little bit warm and I cant get out of bed."

I STILL wanted to increase my meds to get warm.

I dont even wanna think of where I might be if there was no internet.

I guess I would be doomed to a life of pain.

[Rachel--24]

Well I actually did something productive this evening.

I was running errands and had to stop by my friends work....so on my way there I happen to look out my window and see IGeniX. I had my test results in my trunk so I pulled over and went in. I told them I wanted someone to interperet my results for me.

The guy was really nice. He brought me in his office and looked over all my results. He said that unfortunatly, the Western Blots could go either way. They could be positive or they could be negative. There is NO clear answer in those results.

He said that the IND's mean that the technician saw something but it wasnt enough for him to go out on a limb and call it positive...he wasnt comfortable to call it negative either....so its IND.

I asked him if its possible the test could REALLY be a negative....he said it could....but it could also be a positive. He said I should retest. My last test was in Sept. and he said that things are constantly changing in the body and now would be a good time to retest. He said changes occur daily but also my immune system may not be responding.

He said they've tested lots of people who have had the EM rash and they have difficulty getting a positive test even though these individuals have Lyme. He said they've also tested groups of people who have Lyme up to 6 times each and some people may only get one positive result out of the 6. He said everything depends on whats going on with the immune system on that particular day.

I told him my Dr. diagnosed me but I dont feel comfortable without seeing a positive test. He said he understands where I'm coming from but Lyme is a clinical diagnosis also.

The problem I have with a clinical diagnosis is that I believe that mercury and candida can create the same clinical picture that Lyme does. I need to know FOR SURE.

So I asked him about the IFA....he said it could be positive for Lyme but since its only 82% specific...we cant know for sure. It cant PROVE lyme.

He said the important thing would be to rule out all other possibilities....Herpes virus, syphillus, Epstein Barr, etc. I told him my Dr. already did the testing and I'm negative for everything. The only thing that showed up was a past exposure to Herpes Virus 6 (HHV-6). I dont know what that is and I never had symptoms from it and the Dr. didnt seem concerned about it.

Ok...I looked it up...

HHV-6 is relatively new to scientists and is known to cause a common childhood illness, roseola. HHV-6 is known to be present in 90 percent of the adult American population as a result of infection during the first few years of life

.

Ok...so thats the only thing that showed up and I asked the Igenix guy if that could be making me sick. He said no....its a past infection....its got nothing to do with me being sick now. So I asked him if that PAST infection could have made my IFA antibody titer positive?? He said YES...it could be from the past exposure to HHV-6 because the IFA collects all antibodies (IgM and IgG) and the results come from that. So it *could* be positive due to IgG's from the past infection.

Or it could be positive cuz of Lyme.

He said I should do the urine test....the one that looks for pieces of the bacteria.

This panel looks for pieces of the bacteria in urine as well as DNA of B. burgdorferi in the urine. Most physicians use an antibiotic challenge to make the test more sensitive.

He said I should do an antibiotic challenge before this test to wake up my immune system. He also said the test is much more sensitive at the time of menses so I will need to take the test when I'm having my period...I think he said the second, third and fouth days.

I told him my Dr. doesnt want to give me any antibiotics because he feels I'm too sick right now. He said that my Dr. is not someone who really likes to use antibiotics...he's more into the natural treatments for Lyme. I told him I was worried about the new restrictions and he said that he thinks we'll be ok here in CA....so that was good news at least.

He said that the other Dr. who is in the same practice (as my Dr.)does use antibiotics and has 15 years experience treating Lyme. He said even though they are in the same practice they are 2 very different doctors....my Dr. prefers alternative methods and is more conservative with antibiotics. I asked him in his opinion which Dr. is better....he didnt really answer that question except to say the other Dr. has 15 years experience. Later on I might have to make a decision about this....but for now I just want to be certain I have Lyme. My Dr. is expensive and the other Dr. chrages even more!

I told him my Dr. wants to start me on the Cats Claw (Samento). He said it *does* work for people and it may still have an affect as far as waking up my immune system....he said it could help bring out a positive test so not a bad idea to try it.

I told him I wouldnt be able to take the test for another 4 weeks but at least it will give me some time on the Samento and hopefully it will stir things up.

He gave me a kit for the urine test....I gotta have my Dr. sign for it so I'll ask him what he thinks about an antibiotic challenge while I'm there. I also gotta pick up my Samento from him.

I also asked him about the CD57 test.....even though I know Igenix doesnt do this test. He said that the CD57 will tell me if my immune system is run down but its not specific for Lyme....so it wont give me an answer.

So I think I will pursue more testing....first with the urine test and if those results are negative I'll redo the Western Blots. I think its important for me to get a positive test.....I want to be 100% certain I've got it right so I can stop questioning myself.

So that was my experience with the Igenix guy tonight. I found him to be very helpful and it was nice that he took the time to sit down and talk to me about everything.

He did tell me that w/out doing anything I could test highly positive today as oppossed to not getting clear results in Sept. Even without taking antibiotics things can change all on their own from day to day.....so it really just depends on your immune system and whats going on with the Lyme on the particular day that you do the testing.

Sooooo frusterating.

Anyways I'm glad I stopped and asked some questions.

[AndreaB]

That sounds like a really productive visit Rachel. I'm glad you went in.

Was it Laura who posted about being stupid (or something like that). Don't be so hard on yourself (speaking of myself and my tendacies as well ). We all make mistakes. Unfortunately, it's part of life and growth.

Off to get the youngest to bed......still a little late. Just got back from the grocery store 1/2 hour ago. I went by myself which was nice and relaxing (aside from the shopping part ).

[CarlaB]

Rachel, can you add salt and saunas? I'm just thinking, I had 8 positive bands, and I thought it would be negative considering how long I've been sick ... the salt and saunas MUST have helped my immune system. People have started commenting on how good my skin looks (one person is my hair dresser, and she doesn't just say things to make you feel good ... she was amazed). So, if my skin is looking better, it must be helping me detox.

I would consider the other doc, but that's just me. I have always been against antibiotics because of what they do to me, but I've decided that it's the route I'll go, integrated with supplements and all the natural stuff to build my own immune system ... I'd rather feel really bad for a shorter time and get better sooner. I feel like with all the supplements and lifestyle I've done over the past, I've already tried the alternative way. Honestly, I'd rather be trying to eliminate candida naturally after antibiotics than Lyme! But I know it's a personal decision.

At this point, cost is irrelevant ... it's what's going to make you healthy. Even if he's more expensive, if you'll get healthy sooner, it will be cheaper in the long run.

[rinne]

OMG Carla I haven't read back but now I see I really need to. Eight positive bands!!!

The trip was great but I got glutened in a minor way twice and by Sunday I was worn out. I'm still tired today after doing nothing yesterday.

Rachel, I'm glad you had some questions answered by the Igenex guy.

Laura, I'm sorry you had such a miserable day.

[CarlaB]

Eight positive bands!!!

Shocker, huh? I'm still stunned! Thanks to you and Rachel, I found out!!

[CarlaB]

This is an interesting article on detoxification. They specifically mention mercury and heavy metals, among other things. This was posted on Lymenet. Open Original Shared Link

Rachel, you will be glad to find out that you are not the most toxic person in the world!

[happygirl]

x

[CarlaB]

thanks for posting that, carla.

You're welcome! Not that I had buyer's remorse for even a second about my sauna ... but that made me more sure than ever that it was a good investment!! I still use it daily.

[loraleena]

Rachel,

HHV-6 can make you sick if it is re-triggered. It can cause chronic fatigue syndrome symptoms and other related issues. I have read about it in Jacob Titlebaum's book from fatigue to fantastic. There was specific reccomendations for treating it. It is difficult to treat. I'll check it out in my book tonight and get back to you tomorrow.

[rinne]

Maybe this is why I've been able to live with this so long. Whatever I have has knocked me down four times in my life ... the other three times, I've been able to pull out of it with lots of rest for about four months.

I wonder about this too Carla, I have always run on the hot side.

and how is the secretly glamorous Rinne doing today, do you suppose she's making Creme Anglaise?

I didn't make Creme Anglaise but I did succumb to a pint of strawberry Hagen Daas last night.

Okay, I drove to my doc's office, they called IGeneX, then got the results faxed to them. The results were done on the 30th, but the doc hasn't received them yet. They are POSITIVE by CDC standards!!! So, I do have a question ... the IGG is positive, but the IGM is negative, what does that mean??

IGG - positive/IGM - negative

18 kDa + / -

22 kDa - / -

23-25 kDa + / -

28 kDa + / -

30 kDa + / -

31 kDa +++ / -

34 kDa IND / -

39 kDa IND / IND

41 kDa +++ / IND

45 kDa - / -

58 kDa + / -

66 kDa - / -

73 kDa - / -

83-93 kDa ++ / -

Wow, I am so glad that you got a clear positive Carla. I can only imagine what you must be feeling given how long you have been ill.

I understand your desire to receive treatment and recover but I just want to remind you that all treatments with Lyme are experimental at this point and there may not be one answer. I hope antibiotics work for you but much of what I have read seems to indicate it is more successful in early stage Lyme and not so much for late stage or that for late stage Lyme people are talking about spending up to 4 years on antibiotics.

I think the natural protocols like the salt/c take just as long but are gentler on the body.

All I can say is "I'm giddy." It's so nice to have a solid answer after all these years. I am NOT CRAZY!!!!

Of course not, we know that.

Oh....I *knew* you were gonna end up part of the Lyme clan...

Where is Rinne?

hehe....Lyme Clan

Ok, I'm a livid Mommy right now.

About 1 hour ago the kids were chasing after Seth and he fell and hurt himself. I comforted him and he was fine. Well, now he has a golf ball size bump (about 1/3 of a golf ball) on his forhead with a scrape. He must of hit the door frame.

I'm am definately not a happy camper.

A fierce mommy.

Susan, is it your birthday? I didn't realize...

HAPPY BIRTHDAY!!!!!

Belated wishes from me too.

I'm caught up but not entirely back, still very tired today.

[Rachel--24]

Rachel,

HHV-6 can make you sick if it is re-triggered. It can cause chronic fatigue syndrome symptoms and other related issues. I have read about it in Jacob Titlebaum's book from fatigue to fantastic. There was specific reccomendations for treating it. It is difficult to treat. I'll check it out in my book tonight and get back to you tomorrow.

Loraleena, I read that too....my test was positive for IgG. I dont know how my doctor can know for sure that its a past infection...the results say IgG can be for current or past infection. He was totally unconcerned with it though....so was the Igenix guy.

I'm thinking it must be common for most people to show up positive for past infection of HHV-6.

I'm thinking it doesnt normally cause the type of problems that I'm having cuz noone seems very impressed by it at all.

Also in all previous tests for current virus infection nothing ever showed up. Even on my Bioset test...not a single virus showed up. The lady said my immune system kicks butt when it comes to viruses.

[AndreaB]

Hi everyone!

Not much going on but I thought I'd update everyone.

Dad is the same as far as I know. He's been good aside from back pain. My brother has had D for two weeks. He went to the doctor last weekend and I told him to mention the possibility of celiac. The doctor is ruling out other things but to my brother to go ahead and go off gluten for the week as I had suggested and trial next weekend again when he's home from work. He's going to have split pea soup and bread Friday night. My brother was a little better Sunday when I talked to him and hadn't eaten gluten since Friday.

I did tell him he doesn't have to have an official diagnosis. If he has the blood test done and goes gluten free, that would be good. He's borderline diabetic. I know diabetes 1 sometimes goes hand in hand with celiac, but what about diabetes 2. I told him if he feels better gluten free than go for it. He doesn't have much money so he won't do the diet unless he gets sick again this weekend. His doctor made some comment about being this bad off and young (45). Maybe his doctor thinks of celiac as an older person's disease. I was surprised he gave the go ahead to go gluten free for the week and see if it made a difference.

I know it could be a coincidence about his D starting to get better, but who knows. If he gets gene tested it could tell me which parent gave us the celiac gene. He's my half brother so if we have a same gene we'll know we got it from Mom. I think his main heritage is italian, english and irish (the italian/english is from my mom). I'll keep you guys posted on this.

Now off to catch up.....