Just needing a safe haven to vent today…

[Time_of_my_Life]

[user=11]linda[/user] wrote:

Endocrinologists are the doctors who specialize in metabolic disorders like hypothyroidism, diabetes, etc. 

Ditto what Maz has said about getting tested for Lyme.

Linda –  Yes! thats the specialist I was trying to think of.  Thanks for the post.

Perhaps the hotness that I feel is inflamation? If so, I wonder if it is normal to be hot everywhere on your body except my hands and feet?  Even my face and cheeks are flushed..  Is Naproxen and Acetaminophen two different drugs?  Is one safer then the other?  They both say they are pain relievers and fever reducers.  I also have some Hydroco/Apap 5-500mg that I can take at bedtime if I am feeling pain.  Does that have any anti-inflammatories in it?  I really don't know much about these medications because I never use them!  Maybe its a good thing that I start using them? 

I have been reading info on Lyme and I am so confused!  It sounds like a very complex disease!  I don't understand most of what I'm reading!!  All kinds of testing and diet changes and whoa… my mind can't soak it all in!  I still haven't been able to find any LLMDS in my surrounding area.  I can't seem to find any info on them! Ughh… my brain is tired of trying to process.  Enough for the night.. I'll try to figure it out tomorrow.

Thank you for all your kind words and your support Linda.  It really meant alot to me to real all the messages of support I received .. you are all angels in my book!

Lori

[Trudi]

[user=212]Time_of_my_Life[/user] wrote:

I have been reading info on Lyme and I am so confused!  It sounds like a very complex disease!  I don't understand most of what I'm reading!! 

It is a complex disease and too much information to absorb in a few days.  It all starts to make more sense as you learn more.  When I first started on this BB I was overwhelmed trying to keep all the information straight.  Now it's become second nature. 

Take care,

Trudi 

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Hermsi]

[user=212]Time_of_my_Life[/user] wrote:

 

I have been reading info on Lyme and I am so confused!  It sounds like a very complex disease!

Hi Lori,

Here is what a doctor says about Lyme borreliosis.

http://www.drcharlescrist.com/borreliosis2.htm

[align=justify][font=”Arial, Arial, Helvetica”]In many ways, borreliosis is like syphilis. Both of the germs that cause syphilis and borreliosis are called spirochetes (spiral-shaped bacteria).  Before penicillin was discovered, doctors called syphilis ?a great imitator? because syphilis can imitate or mimic virtually any disease.  Likewise, borreliosis often mimics other diseases.  This is one of the key points of this website.  Borreliosis can cause any symptom and any disease.  People who have not been healthy need to consider this infection as a possibility if they are trying to find the cause of their medical problems.[/font][/align]
[align=justify]You might want to try the following link to find a doctor in your area.[/align]
[align=justify]http://flash.lymenet.org/scripts/ultimatebb.cgi/forum/2?[/align]
[align=justify]Good Luck![/align]
[align=justify]Ron[/align]

[Trudi]

[user=42]Hermsi[/user] wrote:

Here is what a doctor says about Lyme borreliosis.

http://www.drcharlescrist.com/borreliosis2.htm

Good information on this website.  Kim–no wonder you drive so far to see him!!

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[lajones2]

Girl, I'm glad you're feeling better! Your comments brought me to tears because I can definitely relate. I frequently thought about suicide in the beginning of 2008.  My sister was upset because I convinced her to get me sleeping pills and told her I couldn't sleep. She cried at my pain.

 I miss my high heel shoes, I miss running, I miss doing yoga and cart wheels with my nieces and nephews.  I miss people treating me like I'm normal.  I work on Saturday's with children and their parents, and one of the parent's identified me as “the girl who limps”.  I had to contain my emotions.  My boyfriend's sister called me “crip” for fun and I had to nicely correct her.  I miss the old me but I am determined as ever to make the “new me” better.  I worry easily and it takes a big toll on my life.  I'm 31 and am glad this got me now so I can look as sexy as you when I get 45.

Laugh, have sex, have fun, enjoy EVERY DAY! God loves your determination and you have a testimony for others. Just watch how many women you're gonna help!

Thank you
LJ

[Parisa]

Lori,

When I first read about Lyme disease, I didn't want to go there either.  My husband tested negative in the beginning of his illness and after looking at some of the websites I decided it was a disease we didn't want to have.  Too complex, too hard to diagnose,  wacky people, wacky treatments, etc.  Further down the road, we were happy to have a Lyme diagnosis because it helped direct my husband's treatment and finally helped turn the tide for him especially since it turns out that he has Babesia and the tetracyclines won't treat it.

Hang in there and take it a step at a time.  Find a good LLMD.  Sometimes it's really worth it to travel (of course, it's nice if you don't have to).

[Kim]

[user=442]Trudi[/user] wrote:

[user=42]Hermsi[/user] wrote:

Here is what a doctor says about Lyme borreliosis.

http://www.drcharlescrist.com/borreliosis2.htm

Good information on this website.  Kim–no wonder you drive so far to see him!!

Trudi

Yes, Trudi, he's great.  I imagine he's like a lot of LLMDs in that you're not sick from just Lyme, so they work at getting your whole body functioning at optimal levels to get your immune system to be able to handle it eventually.

[Kim]

[user=738]lajones2[/user] wrote:

Girl, I'm glad you're feeling better! Your comments brought me to tears because I can definitely relate. I frequently thought about suicide in the beginning of 2008.  My sister was upset because I convinced her to get me sleeping pills and told her I couldn't sleep. She cried at my pain.

 I miss my high heel shoes, I miss running, I miss doing yoga and cart wheels with my nieces and nephews.  I miss people treating me like I'm normal.  I work on Saturday's with children and their parents, and one of the parent's identified me as “the girl who limps”.  I had to contain my emotions.  My boyfriend's sister called me “crip” for fun and I had to nicely correct her.  I miss the old me but I am determined as ever to make the “new me” better.  I worry easily and it takes a big toll on my life.  I'm 31 and am glad this got me now so I can look as sexy as you when I get 45.

Laugh, have sex, have fun, enjoy EVERY DAY! God loves your determination and you have a testimony for others. Just watch how many women you're gonna help!

Thank you
LJ

LJ, What spunk you have………you are adorable!  Do you know how many women you've helped today?

[AK Girl]

Aqua Therapy and RA

Not a pity pot at all, just very real to how I feel on my bad days. Thanks for sharing.

1

[AK Girl]

OMG ….How funny my favorite thing I tell everyone is just get me back to my high heels shoes and red wine.

[linda]

Hi Lori,

Hope you're having a good day! I know it's exhausting to research these diseases and try to find a doctor. I'm driving 5.5 hours (each way) Thurs to see an AP doctor. Wish me luck.

Acetaminophen is Tylenol, and naproxen is what used to be a rx NSAID that is stronger than tylenol, but kinda harsh on the tummy, definitely needs to be taken with food. I think it was the last of the NSAIDS that came out before they came out with Celebrex, Mobic, etc, which are designed to protect the lining of the stomach better. They have some cardiac risks, tho; can't get away from side effects with any of these meds. The hydrocodone is a narcotic pain reliever, I don't know what APAP is, but hydrocodone is often mixed with tylenol, so maybe that's what it is, not sure, tho.

My experience with narcotic pain relievers has been very bad, avoid them if you can. If just taken at night, it's probably not as risky as taken several times a day. They can be helpful with sleep if pain is keeping you awake, but they always made me feel like my mind was running a hundred miles an hour. Everyone is different. I think I've mentioned it before, but acupuncture is a good way to relieve pain with no side effects. It releases endorphins, just like narcotics. Nothing comes without a price with these diseases, tho; most insurance companies don't cover it. To be effective it needs to be done at least once a week to begin with, but the effects are cumulative so that you can stretch the treatments out to once every 4-8 weeks. It can cost from $50 -80/treatment, so if you can get thru that first month or so, it is affordable. IMO, it's well worth it.

linda

P.S. Hi, AK Girl, just wondered where you found that awesome picture of me!;););)

[lajones2]

It's hard to swim and I admire anyone with the diligence to to so. Moving my feet in the water is painful even though the water is supposed to make me light. I tried a couple of water classes with seniors but I hate being cold (Chicago winters) and I made a lot of excuses as to why I couldn't.  Thanks for the motivation, I was thinking of starting again.

As far as the preds, I found that I couldn't gain weight with them. The hydrocortisone that a natural doctor had me on initially was a natural version of prednisone and i tried to go cold turkey off the hydro and ended up in the ER and the doctors switched me to preds reluctantly.  I am down to 8.5 from 10mg since my visit with Dr. S in late September. I know that I am really weaning off slow, but I am afraid to go too fast with fear of a relapse. I was told that preds cause hip damage.  I'm freakin' out, but trying to stay calm at the same time.

AK girl, 60 mg was a lot. How long did it take you to wean off.   Has the swimming brought any of your mobility back?

LJ

[AK Girl]

Pred was a bear to wean off of. I have also been to the hospital from a Dr at first who took me down 10 Mg a week and by the 2nd week landed in the ER in a heap. 1 MG a week decrease of the Pred for weeks. But decreasing was not an option until I started Enbril and Methotrexate in November 08.

 

 

[lajones2]

So you are still on those meds after starting AP.  Did you get or are you seeing any results from AP?

[AK Girl]

OOPs!  Difficult to say where all the improvement comes from as I started both therapies at the same time Enbril and Aqua therapy. Many things have improved from the mobility standpoint. 

Gail

[Author]

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