i had the knee surgery,came back pos. for lyme.(tissue biopsy).

need your help,with neurontin/oxycontin....gary

------------------


 

------------------


 

------------------


 

How is my friend doing? Wow, I am so pleased that they actually found something in the biopsy...are you going to get proper treatment now?

How is the recovery going?

------------------
C O L O R A D O * S U P P O R T * S Y S T E M
[email protected]
 

Did you not have a lyme diagnosis before biopsy?'
RSD in full force?
I am still on neurontin, mscontin and minimal hydrocodone when I can help it. Also started cymbalta and glutatione.

Let me know what questions you have
regards
paisley

i have 2 pos. wesern blot's from Quest Lab's. they have both been dismissed by a I.D. and a rheumy.

i have a clincal dx from dr. V.S.,noted lyme psych.
i also have a postop report,from my open synovectomy.sez lyme arthritis and extensive synvovitis.

now i have a pos. tissue biopsy for lyme.all this fit's cdc spec's.

i can not pay out of pocket for a llmd. i must go through the front door.and i have. have done everything requested of me by the backward duck's.

i have beat them at there own game of b.s..now i am waiting for an appt.to see the same rheumy that treated me the first time(over 2 and half year's ago) with iv abx.

in the meantime,my lyme worsen's.now i must deal with the rsd too.

the rsd pain is killing me.i am taking 900mgs daily of neurontin ,plus the duragesic patch(100mcg) percocet, lexapro,dilantin, nortriptylyne..pain is still unbearable at time's.

the rsd is spreading to my other thigh.also can feel it in my wrist's..

my ?..how much of the neurontin do you take daily? what is the dosage of your other med's for pain.what are they?

also i will have a knee replacement within a year.i know the rsd will worsen.but i wil rid myself of the awlful knee pain.

last surgery on my knee showed bad lyme arthritis(got pix) and bad bone wear.lyme/rsd combo is softening my bone's there.

if i can the lyme treated,i will be able to tell were what pain ,is what disease.

the lyme is over taking my thinking abilitie's.then put the pain med's in the mix.getting harder...

going on too long. please just answer the ?s above.i am losing track where i am right now. , gary

------------------


 

i see your moving.fresh start? hope everything goes well,with the move.

i am happy to see you are better and have the lyme on the run.be proud of yourself.i knew you were brite.

my brain is being taxed already this morning with the above letter.can't seem to focus well.

anyway , thankyou for your help in the very begining of lymenet.will never forget that. i wish you well.prayer's and god luck , gary

------------------


 

I am so saddened that you are still going through so much pain. My heart and prayers go out to you.

No need to answer right now...but could you explain what RSD is?

Or, perhaps Paisley would be so kind as to clarify for us?

I know I have talked to you so many times about seeing a good LLMD...and I DO understand the insurance (or, more properly, the no insurance) issues...

But my goodness, isn't there anyway you can muster up enough cash to go without involving your insurance?
Take out a loan, charge it, do whatever you have to just to get on some sort of adequate treatment plan?

Believe me...I myself am up to my eyeballs in unpaid med bills...but now that I have come through the worst of it, I can now find a job, and begin to repay.

If I had only done what my measly school insurance would allow, I would still be on the couch day after day waiting for a miracle to come knocking on my front door.
I would be sick, and getting sicker, stacking up more bills in the long-run.

Yes, I am flat broke now...but I AM better!

There are ways to get around the high expense of meds...many free sites...and lower cost meds and docs.

The ``system'' sucks...and trying to go through the front door is a long and painful process...as you have found out all too well.

I'm still here, and I haven't given up on you yet!
Let's brainstorm, and see if we, with the help of others, can come up with a plan, OK?

Love,
M

------------------
C O L O R A D O * S U P P O R T * S Y S T E M
[email protected]
 

------------------


 

------------------


 

Should you be taking nortriplyne AND neurontin -- aren't they basically the same type of medication - are you weaning from nortripline and going on to the neurontin.

i know that's what i had to do because biaxin antibiotic interacted with nortripline.

just my two cents (along with my previous email) just not sure what antibiotics you are on.

diane
 

my gp is running pain management.so i know i am alright where i am.(just had a cbc)

the pain is just as bad.i need to know where to go from here.or just some info i can run on.

paisley has lyme and rsd.she also has 2 children to care for,and herself.all 3 are lymed,plus her rsd.

thankyou for taking an interest in my well being,but i need someone in my position.....gary

------------------


 

my gp is running pain management.so i know i am alright where i am.(just had a cbc)

the pain is just as bad.i need to know where to go from here.or just some info i can run on.

paisley has lyme and rsd.she also has 2 children to care for,and herself.all 3 are lymed,plus her rsd.

thankyou for taking an interest in my well being,but i need someone in my position.....gary

------------------


 

although I do not like being on the meds I am on I have no choice. I have definately seen some improvement with my RSD in my dominant hand. I 'll give you more detail later and will look at my old med notes to tell you amounts I was on. My rheum. told me I would be on neurontin for a long time to settle down the nervous system. At this time i am taking in 2x/day (dosage ? tell you later).

I am also on morphine and hydrocodone for breakthrough pain. The pain is off the charts. It's something you may have to get through on a minute to minute basis. You are having pain that is at the highest score on pain measurement scales.

There is another option I wanted to mention, which I have discussed here once before called de-enervation of the nerves. I had it done-- amazing results...again, I'll give you more info. when I can think straight.

Sorry to hear all that you have been put through recently. So frustrating. There are options I would like to discuss. Thanks for using me as a resource- it makes me feel like I am able to do something helpful for someone else. Wish I could do more because I know what you are enduring.
Don't do any nerve blocks because they contain steroids!

Will get back to you soon.
regards'
paisley
 

i'l wait for your info.just you rest up.i do know what you are going through.

feel better first.i can deal with where i am ,at the moment.

prayer's for you and your children....thankyou , gary

------------------


 

------------------


 

[This message has been edited by JesusisLord (edited 20 June 2005).]
 

i am gary(geden13).i think you have us mixed up.

but thankyou for trying. , gary

------------------


 

I stand corrected.

Hope you feel better soon.
 

------------------


 

------------------


 

Someone mentioned two meds - I think amitryptiline(sp?) and neurontin - one's an anti-depressant and one is an anti-epileptic i think , but used for nerve pain.

Anyway, sometimes the meds do have side effects of worse nerve pain - I have had it happen and its bad.

So, please be careful.

Paisly mentioned she is on Cymbalta - that is what my doc is considering giving me - its for nerve pain like RSD, might be worth asking the doc about.

Good luck,
cd
 

------------------


 

When the kids were little and had to have their endoscopies, i'm pretty sure that is what they had to knock them out. I could be wrong, sorry.
 

------------------


 

------------------


 

------------------


 

------------------


 

------------------


 

I'll go back to read question and responses (skimmed everything to see if post still alive), but what is going on with you?

I wish I had some encouraging info. for you. We are dealing with an extra layer of pain and discomfort - on top of the already severe pain of lyme.

I am a year into my RSD. But it has improved just a little bit. I remember that I couldn't even sleep (even with sleeping pills) when it first started. So perhaps the nerves are settling down a bit. Some days it is better, some days worse - and no rhyme or reason as to its cycles.

I feel your pain and have said some prayers for you. Please let me know what is happening.

------------------
best regards and blessings,
paisley
 

i hope you and your children are better.

i need to know ,about how far you went with the neurontin.(doseage) and how long to/do you have taken it?

i am up to 1800mgs daily.along with the percocet,durgesic patch(100mcg) dilantin,lexapro and nortriptyline.

the rsd seem's to rip through all that.i am trying to find one pain med to cover everything that is going on with me.

do you think that if i were to double the neurontin to 3600mgs ,that it might do away with all these pain's? rsd,lyme arthritis and fibro...

my liver is going through hell. i do get a c.b.c every 2 week's ,just to be sure that i am not doing any/to much damage to it.

you are the only one i can find with rsd and lyme.this is why i need your help.you have had it longer,you know much more than i....

anything to put me in the right direction would be sooo helpful...gary

------------------


 

thanks for your well wishes. I am taking the children to see dr. jones next week - it will be there first official appt. with a pediatric lyme dr.

I have a couple of thoughts.

My first thought is be careful about the Neurontin. I don't think much is known about this drug, as per my llmd. It was first used for people with seizure disorders and then recently for people like us with RSD because there are no other alternatives. By the way, don't ever come off Neurontin cold turkey - very dangerous.

I am currently on 1200/mg per day. As I said before, my Rheumatologist who diagnosed the RSD, before we knew that I had lyme, said that I would be on Neurontin for a long time because it would take a while to settle the nerves down. However, I have not seen him since, because once I questioned him about whether he thought I had lyme disease (with all of my other symptoms) he said that he knew nothing about lyme (he is at a top teaching facility in L.A., so I don't believe that one bit), but he dropped me like a bad habit that very day. No one has been addressing my use of Neurontin because of that - I just use my gp to prescribe what ever I need for pain.

On another note. I know that you are not on morphine right now. I don't want to sound like I am supporting its use, but I do want to let you know that even though I tried to resist its use - I found that I had no choice - the pain is just too great. Even with morphine (MS contin) I do have to use Vicodin for breakthrough pain on occassion when the rsd ramps up. Believe it or not, the side effects for MS Contin are fewer than the side effects for Vicoden. My gp said that my body would not heal as fast if I were in pain 24/7, and I agreed with her. It made a big difference in my situation when I began to get pain relief.

I am also on an anti-depressant called cymbalta, which was also prescribed for depression and pain, it may also have something to do with my improvement.

Just recently I started using a homeopathic remedy called, "Hypericum Perforatum", which I got at Whole Foods. This remedy is for nerve pain. I have been using it for 3-4 days and have noticed a decrease in the pain in my hand and my leg pain. Do you know anything about homeopathic remedies? I decided to give this a chance because I have had incredible success with homeopathic remedies for a scorpian bite I received recently on my bad leg. My llmd, who is also uses naturopathic medicince got me right to his office when I missed an appt. due to the scorpian bite, which paralyzed my leg completely. He used some remedies and it was absolutely astonishing.

I have started to reduce my dose of MS contin and hope to be off it in another few months. I am now down to 1/2 of what I used to take, so that is progress.

I do think that I have made progress with my RSD. Last year (7/03/04) I was diagnosed and the pain was constant. Now, the pain waxes and wanes. When it is present I can't even write or type. Last year I would not have been able to type this response to you. My ducks back then said that the pain is comparable (actually above) to end stage cancer pain.

I have spoken with several people who have had RSD who said that it is now gone for them - so there is hope for us.

One last thing I thought about. There are 2 drs. (partners) who have perfected a procedure for nerve de-enervation for cases just like us (they do not promote it because they really started their work on diabetic neuropathy patients and found that it would work with RSD patients also). Most drs. do not like working on RSD patients because it is so tremendously difficult to manage. One of these drs., who I happened to meet at a medical conference my husband was at, saw my hand and was shocked. He knew immediately what was wrong with me. I happened to live 2 hours away from his office and he had me come in to do a test where they block the nerves to see if I was a candidate for the surgery to permanently "block" these nerves. It worked and I was amazed - it didn not compromise the use of my hand and the pain was gone!.

If my RSD continues to stay with me I will do the surgery in the future. I do not think I am a good candidate for surgery right now. I do not feel strong enough for a surgery and I need to take care of the children's health right now. However, I would highly recommend looking into this (look at there website) and CONSIDER this as an option if you are a candicdate and you continue to live in the horrific pain that you are enduring.

Dr. Christopher Maloney & Dr. A. Lee Dellon. Go to their website: www.dellonipns.com; look up interactive patient tutorial and go to knee pain. I just went their site myself and didn't even see RSD, but you will be able to contact them or call for more info. I consider this a real alternative for you if you continue to have problems. The doctors have excellent reputations, I have personal first-hand experience and were they pioneered the procedure and were the only two in the world who were doing this kind of surgery!

Please keep me informed. I am thinking of you and hope that you find some releif soon.

------------------
best regards and blessings,
paisley
 

i had forgotten to mention that,i am also seeing an orthopedtist for my right knee.

i had surgery on it 2 month's ago.(3rd) i am now bone on bone in my knee.i had an open synovectomy two year's ago.my synovial was trash due to the lyme.

i am currently going to pt.trying to determine when i should have a knee replacement.it must be done,due to the lyme damage.

i know this,because i had a tissue biopsy done,and it is highly positive for lyme disease.

also i can't afford out of pocket treatment for lyme.iHAVE TO see/use a rheumy.that appointment is ot till the end of sept.

i am well aware of the surgery/rsd thing.about the rsd spreading after surgery.this happened with the knee surgery two month's ago.spread to my wrist's and ankle's.also left thigh.

today i start a serie's of shot's in my knee to try to lubebracate(sp?) my knee.help with the bone on bone pain.

so you see my rock and hard place.knee has to be replaced.just a matter of time.ortho want's me treated for lyme first.i need long term abx.duck's don't treat lyme like that.

hopefully this postop report,showing lyme disease in my knee ,from the tissue biopsy ,will convince them of long term abx....

i know this is hard for me to ask you,but i need someone to help me through this.thing's are only going to get worse.i don't want to burden you.you must care for yourself and kid's. could you look my way,every so often?(help me?)

thankyou for getting back to me.just a relief....hope appointment for your children goes well..

get back to me,when time permit's you. be well paisley and thankyou again.....gary

------------------


 

------------------


 

Just wanted you to know--I sent you a e-mail with some information that maybe you could use

Take Care
 

------------------


 

I had the e-mail returned to me this morning

Seems that I can't correctly type a e-addy at two a.m

I just re-sent it--let me know if you don't get it.

[This message has been edited by yankee in black (edited 07 July 2005).]