Re: Re: Dealing with pain (was) s/c and mms

[Guest guest]

Dear ,Several thoughts here:Chris' last Lyme test being negative is typical - our bodies stop producing antibodies after a while because the Lyme has changed our DNA structure so that our bodies no longer see Lyme as a threat. This is part of the reason why so many test negative, but really are positive.

As far as pain meds go, one doc insisted that NO ONE EVER take oxycotin. He was a psych. with the Amen Clinic and said that this drug (and maybe oxycodone) is like meth. Many people become addicted with one dose.I think that massage is a great idea, maybe look for a male massage therapist so your son won't be embarrassed. Go in with him.

He probably didn't hold the adjustment because his muscle are weak.  I prefer PT (with a talented PT) because they also focus on strengthening.Be prepared, your endocrimologist appt. may be very disappointing. I'm hoping your endo is either Lyme literate or into integrative meds. Otherwise these folks are usual by the book - unfortunately it is the wrong book. You'll be lucky if they run the tests you ask for, and chances are they will look twice at you for asking them. That's OK, ask, get as many as you can. The bare minimum would be:

a.m. cortisol, drawn before 8:30TSHFree T3Free T4Reverse T3DHEA and Vitamin D would be good, but I'd bet he's very low.My endo was horrible.  I got my thyroid and adrenal meds through a regular MD, who understood how flawed the tests are.  They are around.  If you need ideas on how to find them, let me know.

As far as the essential oils go, there is a lady on the net who has a class on Biblical essential oils. I've thought about taking it, but my plate is darn full right now.  I'm trying to get my Lyme friend, whose kids are grown and doesn't work to take it, but so far no luck.

Best,

 

Jan,

I will definitely try your suggestions! Chris' last Lyme tested Negative, so pain meds are going to be hard to get. Even the sports med and neurologist did not offer or suggest. My brother and SIL are both Chiros (one is an AO chiro). I also took him to another in VA (we are in NC), who was adjusting wonderfully, but was just not holding the adjustment. I have also tried acupuncture. I do not even think we have an LLMD down here (northeast NC).

does not like baths. I think it makes the pressure worse so he avoids them.

I do have incense essential oil. I have also started the sauna.

Did your daughter use a coil/rife? How did she get better?

What is hydrocodone apap?

Thanks so much for your help. I will email you.

>

>

>

>

> ,Has tried getting a massage? ?They canbe very relaxing especially if you take a magnesium bath afterwards.I take hydrocodone Apap.It takes the edge off my pain when hot soaks and my herbs dont work.You can use St swort topically make a tea and rub it on the body or get hypericum by Hyland and spray on the body.incense essential oil also helps resolve pain .Boswellia is a form of frankincense in capsule form..Has tried chiropractic care ?perhaps achange in diet might also help the pain

>

> jan

>

>

>     Posted by: " j1o2yl " 4blessings4us@... j1o2yl

>     Date: Fri May 27, 2011 7:16 pm ((PDT))

>

> Jim,.

> Chris

> had an extremely bad night.  We went to Mass and he was one of the

> altar servers.  He usually does not serve a Low Mass (mostly kneeling),

> but he volunteered tonight.  He made it about 8 minutes and he had to

> come off the altar.  I walked out of the church and he was crying, which

> does not do much.  I completely fell apart along with him.

> He

> did have a bulls eye in June 1999 and many positive Lyme tests.  So, I

> know without a doubt he has Lyme.  I also saw the spirochetes in his

> live blood viewing.  No doubt at all.

> How long were you on pain

> killers?  I think is afraid that he will be addicted (lol) and is

> afraid to go on meds.  What type of pain meds are you speaking of? 

> Morphines are out.  All the children are allergic to morphine. 

> Wouldn't a spinal MRI have seen if the myelin sheath was affected?

> Also

> it would have shown nerve impingement, but there was none.  I am going

> to forward Chris' records to another neurosurgeon (friend of my brother)

> to see what she thinks.

> I have had his hair tested and he has no mercury in his system.  He has no cavities and has only about 3 or 4 vaccines. 

> His energy is good as well as his appetite, he WANTS to do things.  Besides his back, he has no other pains or aches. 

> He has been in PT three separate times...that did not work.

>

>

>  

>

> " Im not trying to counsel any of you to do anything

> really special,except to dare to think, and to dare to go with the truth ,and to dare to love completely. " -R. Buckminster Fuller

>

[Guest guest]

,Even though his appt. is in the afternoon, tell the endo you'll come back for labs! That morning cortisol is VERY important. Legally, you can take your lab slip to any lab.IMHO, the easiest and best exercise for strengthening the core is 'the plank'. I'm sure there are better, but this one works your whole core and you only need to start with 30 seconds a day.  If he could just do this, even 15 seconds, and gradually build up to 1.5 or 2 minutes. 

I'm a Lymie who cannot tolerate much aerobic at all - it makes me worse and increases my fatigue. The " plank " has been something I can manage.You don't have to beg and cry, but you can have a piece of paper handy with the tests you are requesting and your child's symptoms (look these up if you need reminding or help identifying). If the doctor refuses and them to write the reason why on the paper and to sign and date it. (I've done this, it works.)

Any doc can run these labs and prescribe the meds. Integrative doctors are much more willing.L

 

,

has had many positive tests before, but last April was the one that was negative...no surprise.

It's funny you said about a male doing the massage. It's one reason does not want to go....lol May he always be that modest

Thanks for the advise on oxycotin...scary, and how many do not know this? I am sure you are correct about his muscles being weak. He has not used them properly in a long time. One of the chiros explained that because children/adults do not do the physical pull and push motion while working anymore causes the back/stomach muscles to become weak. I completely agree.

The endo I scheduled with is an endo of mine. I had a miscarriage in 2008 and he was the one that ran the spectrum of tests, much like the ones you listed, and a couple more. I have a decent knowledge on hypo/hyperthyroidism because my family is littered with it, so I am hoping he goes along with the tests. I will beg and cry if I have to (half kidding). I have a friend that requested cortisol test from her endo and he declined because he felt it was not warranted. Unfortunately his appt. is a 3:30, so I am unsure what he will do about the cortisol.

I have been to so many bad endos and feel , besides Lyme, it is one of the most understudied fields. To find a good one is like finding a needle in a haystack.

The classes sound interesting.....

Thanks for your help.

> > >

> > >

> > >

> > >

> > > ,Has tried getting a massage? ?They canbe very relaxing

> > especially if you take a magnesium bath afterwards.I take hydrocodone

> > Apap.It takes the edge off my pain when hot soaks and my herbs dont work.You

> > can use St swort topically make a tea and rub it on the body or get

> > hypericum by Hyland and spray on the body.incense essential oil also

> > helps resolve pain .Boswellia is a form of frankincense in capsule form..Has

> > tried chiropractic care ?perhaps achange in diet might also help the

> > pain

> > >

> > > jan

> > >

> > >

> > > Posted by: " j1o2yl " 4blessings4us@ j1o2yl

> >

> > > Date: Fri May 27, 2011 7:16 pm ((PDT))

> > >

> > > Jim,.

> > > Chris

> > > had an extremely bad night. We went to Mass and he was one of the

> > > altar servers. He usually does not serve a Low Mass (mostly kneeling),

> > > but he volunteered tonight. He made it about 8 minutes and he had to

> > > come off the altar. I walked out of the church and he was crying, which

> > > does not do much. I completely fell apart along with him.

> > > He

> > > did have a bulls eye in June 1999 and many positive Lyme tests. So, I

> > > know without a doubt he has Lyme. I also saw the spirochetes in his

> > > live blood viewing. No doubt at all.

> > > How long were you on pain

> > > killers? I think is afraid that he will be addicted (lol) and is

> > > afraid to go on meds. What type of pain meds are you speaking of?

> > > Morphines are out. All the children are allergic to morphine.

> > > Wouldn't a spinal MRI have seen if the myelin sheath was affected?

> > > Also

> > > it would have shown nerve impingement, but there was none. I am going

> > > to forward Chris' records to another neurosurgeon (friend of my brother)

> > > to see what she thinks.

> > > I have had his hair tested and he has no mercury in his system. He has

> > no cavities and has only about 3 or 4 vaccines.

> > > His energy is good as well as his appetite, he WANTS to do things.

> > Besides his back, he has no other pains or aches.

> > > He has been in PT three separate times...that did not work.

> > >

> > >

> > >

> > >

> > > " Im not trying to counsel any of you to do anything

> > > really special,except to dare to think, and to dare to go with the truth

> > ,and to dare to love completely. " -R. Buckminster Fuller

> > >

> >

> >

> >

>

[Guest guest]

Jim and all,I've always agreed with the theory that if you are managing pain you will not become addicted. But, (the big 'but') I'm not sure if I would agree that all opiates are the same. Yes, they all work on your opiate receptors, but if they were all the same there wouldn't be so many.

This psychiatrist didn't say to not use opiates he specifically said that oxycotin (I'm pretty sure it was oxycotin not oxycodone) was easily addictive.  I really don't know, but he is a 'brain doc' so he sees a lot of this stuff.  I'm more in line to follow the mega geek :-) researchers on this group than a doc, but I think it is something to take note of. It seems very possible to me that one opiate could work in such a way to create a dependence easier than another opiate.

Also, yes, many people take pain meds for the 'high' but some people start with managing pain and then become addicted not just dependent. Is this a reason to deny pain meds - absolutely not.And there are people - like my son - who I would want to avoid anything that could give him a 'high'.  With all his neuro issues and his genetics and with how crappy he feels (not pain) he is a prime candidate for addiction.  No, I wouldn't let him suffer if he was in pain, but I would be very careful.

My chemistry?  I do not get 'high' off of opiates or tranquilizers.  The opiates make me so sick that usually the pain is more tolerable. I have several friends who have different chemistry - taking half a tylenol 3 (for pain) gives them a high, or .5 mg of xanax for stress makes them euphoric - not me - xanax makes me feel 'normal'.  I think a lot of this has to do with our neuro-transmitters.  My one friend (who gets the 'high') also has huge cravings for alcohol, however, when she is taking L-tyrosin (I think) her cravings are gone.

There is a lot of research on addiction and neurotransmitters and treating with amino acids. Actually, the groups who treat with amino acids are having the highest success in treating people. (See Ross' books and Braverman)  Interestingly enough, they are having the same success with anorexia.

, you are doing a great job as a mom!  I'm sure Kendra didn't mean it as in insult.  Please keep in mind that all of us on this group are stressed out and most of us are sick.  Sometimes we are at the computer when we aren't feeling well enough to do anything else. Sometimes things simply come out wrong when we are typing. For myself, I've written a comment and then I've read it a few days later - not even remembering writing it. Or reading it thinking, wow, I was rather curt. We all have different backgrounds, experiences and fears - that's what makes us a good resource.

Best,

[Guest guest]

Dear

I am truly sorry if my last sentence offended you, but I was deeply

concerned after you commented that you would rely on the advice of a

pharmacist - instead of a physician who is trained to deal with

chronic pain. I even explained why I was concerned about relying on

any 1 pharmacist. Esepcailly, after Jim laid out things in such

detail. It seemed to me like your reply with dismissive compared to

the effort that Jim made to lay out the need to treat chronic pain.

Again, I mean no offense - I'm simply relating my impressions &

observations and trying to share what little wisdom I've gained after

living with chronic pain for over 25 years, since age 26.

Not to offend or alarm you even further, but it is often difficult to

find knowledgeable doctors to treat chronic pain. The rate of suicide

in untreated chronidc pain sufferers is very high, as is also true

with Lyme. It is very difficult to live with relentless pain that is

present 24/7. I'm simply urging you to look further than the adivce

of a single pharmicist at a corner drug store. Or even multiple

pharmacists unless they have unique or specialised training to work

with chronic pain.

Unfortunately, there is a long-standing bias against treating pain in

the USA, largely due to hte War on Drugs - and the newest twist, the

escalating abuse of RX drugs which has lead to further backlash

against treating chronic pain - especially in young people. Maybe

people are forced to live with severe untreated pain for many years

and often have to travel long distances to find treatment. It is a

tragedy perhaps only 2nd to the tragedy of untreated lyme.

I hope that finds relief soon -- Medsonix has worked for a

friend - there is a location in Florida. HBOT worked well for me -

for a time.

I wish you & your son well.

Kendra

> Kendra,

> While I do thoroughly appreciate your advice, I am insulted and offended at

your wording:  Please do MORE research before condeming your son to further

suffering.

> The thought of what you insinuate is really sad.  If you knew me, and how much

time and care I give you would have hesitated to write this.

>

>

>

>

> -

>

>

>

> ------------------------------------

>

> If your post is not about electronic devices used in the treatment of Lyme

then please put an OT: in the subject line.

>

> -------------------------------

>

[Guest guest]

Hello ,here is what worked for my frozen shoulder ( unbearable pain) and for my sweety hipFo rme each time I see the first sign of pain i immediatly get to a colonic , th eevery day coffe anema of 8 cc I tryed recently helps somewhat also i read someone here in th epast saying that the frequncey 880 was releiving his pain .basically it is due to toxines and inlfammation so detox looks ot me a very must . When I was so bad with the shoulder what worked fo rme was canabis, legal cannabis I got in switzerland regular hamp leeves and veterinary hamp oil ( as it was forbidden for human . in oe week I was fonstionning again and then the rehab di dth e remaining what worked fo rmy sweety fo rhis hip was hot swimming pool rehab we were doin git ourselves as it was too expensive

for us ther ewas an hospital where we could go to their body temperator swiming pool at lunch time for a montly fee of 50 $ it was a memorial hospital jus tone souht florida hard to find I pu thim back on hi sfeet little by ltille this way i think it is souverain for diffcult cases. I knew it as 20 years ago i had a unusual probleme with my knees and it saved my knees Kinldy MarieSubject: Re: Dealing with pain (was) s/c and mmsTo: Lyme_and_Rife Date: Wednesday, June 1, 2011, 1:32 AM

Hi ,

At an orthopedic physician's office... It was set up with a MedX machine and a full gym of Nautilus equipment...

Jim

> > >

> > > Hi ,

> > >

> > > I can see this is really affecting Chris's life, first the exams he failed,

> > > now not able to kneel for more than 8 minutes... Something is very wrong to

> > > cause this pain, but it could be just a damaged nerve rubbing on bone, that

> > > is all it takes... And because it can be such a small thing, often hard to

> > > detect what it is... When pain interferes with life and doctors can not

> > > cure this pain, changes are good it will continue indefinitely... Mine

> > > started in 1991, first surgery in 1996, second in 2002 after pain

> > > worsened... At that point, I had no other options but pain medication, I am

> > > still prescribed it today...

> > >

> > > The point I am trying to make, this pain now is controlling Chris's life...

> > > Here is a comparison I can make... With Lyme, I can concentrate on other

> > > things and not think of Lyme, thus it is not controlling me 24 hours a

> > > day... But if I stop my pain meds, my pain will be unrelenting every second

> > > of the day and it is what my brain will concentrate on, not the things I

> > > want to do... Pain that is unrelenting, means the brain is always dealing

> > > with and thus thinking of pain only... Other things in life become

> > > unimportant as his brain can not comprehend beyond he feelings of pain.. I

> > > know the pain is in his back, but in reality, it is the brain that suffers

> > > for this pain as pain is registered by the brain.. And there also is a risk

> > > of "phantom pain." This happens when the brain registers the pain from an

> > > area for a long time.. The pain may stop, but the brain still recognizes it

> > > is there... Take the guy who has severe pain in his had for several years,

> > > then one day he loses the hand in an auto accident... The hand is gone, no

> > > longer there... But he still feels the pain coming from that hand... This

> > > really dose happen, my pain doctor felt I had this pain for so long, it was

> > > possible it was now phantom pain...

> > >

> > > http://www.mayoclinic.com/health/phantom-pain/DS00444

> > >

> > > Whether this pain is caused by Lyme or something else really does not

> > > matter... What matters is the pain will not stop... If at some point this

> > > pain is relieved, then he will have no further need for the pain

> > > medication.. But since I personally know a lot about pain, I would not count

> > > on this pain curing on its own in the future, some kind of intervention most

> > > likely will be necessary and unfortunately, it often is very hard to

> > > understand what is causing pain, thus attempts to fix it often fail... Chris

> > > can not continue to live his life like this, the pain will control his life

> > > and there will be many things in life he will never do...

> > >

> > > I don't think an MRI can detect myelin sheath damage, but I am not 100% sure

> > > about this... I've had 14 CT-Scans, 8 MRI's of my gut and back, nothing

> > > showed up... But it is definitely worth a try, if something can be detected

> > > that is causing his pain, correcting it is the best thing.

> > >

> > > When you do forward his records to this other neurosurgeon, if he tells you

> > > he doesn't not see anything causing this pain, ask him to refer to a

> > > pain management specialist.... These doctors can also do diagnostic testing,

> > > using needles and anesthetics, called nerve blocks to see if these will

> > > control the pain... I've had 8 of these blocks, 2 helped, but could not be

> > > duplicated. Often pain meds are the last thing a pain docs wants to use if

> > > physical therapy or nerve blocks work, they may be the answer to either

> > > ridding or controlling this pain.. But if all else fails, pain medication

> > > can give his life back... They really do work... I never feel any

> > > effect from my medication, unless I forget to take one on time, then I start

> > > feeling pain... I would prefer not to have to use pain medication, but for

> > > some people, it is the only option...

> > >

> > > I don't really put a lot of faith in physical therapy, it never helped me...

> > > But some do benefit... If has been to PT just for 3 sessions, this

> > > really is not enough... I was prescribed 8 sessions, then 8 more...

> > >

> > > My back pain was finally control after 18 weeks of MedX therapy... I value

> > > this therapy far superior to normal PT as it was initially developed to

> > > correct back problems and thus back pain...

> > >

> > > In the mean time, try ice and heat... Ice for 20 minutes, 20 minues of

> > > nothing, 20 minutes of heat... Repeat if needed... Sometimes this is a good

> > > shorter term option for relieving some pain...

> > >

> > > --

> > > Take care,

> > > Jim

> > >

> > > Rife, M-M-S, Salt/C, Ozone water

> > > I have NO financial interest in anything I discuss.

> > >

> > >

> >

>

[Guest guest]

Hi ,I know you are frustrated, so I'm sorry to throw more at you, but here goes :-)Are you sure about the deep tissue massage.  I asked my Swedish massage therapist about deep tissue two weeks ago. She said that she had it done once - to see what it was like. She said that it was extremely painful.  She also said that she didn't talk to many people who had success in it. I noted that maybe that was because it is so painful that not too many people do it and it isn't very popular.

I had a deep tissue massage once.  I kept telling the MT to back off, that I was tensing up because it hurt too much, she insisted on continuing - that 'it would help'.  Well, not only did I feel extremely bruised for weeks, but my constant spasm was even worse! 

My experience was neck spasms. They begun at 19 and just kept getting closer and closer together. At first a week or two on muscle relaxants would help. Then it just got to the point nothing helped. I went to several PT's and several chiros - they all made it worse. It was even worse with my pregnancies - I think because we produce a hormone that makes our ligaments worse. Long story short, after 15 years I finally went to an ortho (not that I recommend them, by God's grace he helped).  I filled out a pain chart and he knew exactly what it was - I'm tall, and I stand with my head forward and a little down - my muscles were in constant spasm.  Also, all the chiro didn't help because I couldn't hold an adjustment  - too weak. The PT's I went to pushed me too hard and I spasmed more. Again, by the grace of God I found an amazing PT.  She had me do a few specific (easy, gentle) exercises and within a few weeks the spasms stopped.  It has been several years with no problems.  If I do something to strain those muscles (like painting) and recognize the early symptoms, I just do my exercises and I'm fine.

I guess what I'm trying to say is, you need to find out the source (if you can) so that you can address it from that angle.  In the meantime, pain meds wouldn't hurt. Maybe will never know the cause.  If you want to come to the Pacific Northwest you can see my amazing PT - she's fixed up everyone I know.

Best,

[Guest guest]

When I have pain coming up in the back I do a colonic or a liver flush and it goes .I do it at the very beginning so it may take longer when already establsishedtheliver flush is very cheap worse a try Kindly MarieSubject: Re: Re: Dealing with pain (was) s/c and mmsTo: Lyme_and_Rife Date: Wednesday, June 1, 2011, 2:39 AM

Hi ,I know you are frustrated, so I'm sorry to throw more at you, but here goes :-)Are you sure about the deep tissue massage. I asked my Swedish massage therapist about deep tissue two weeks ago. She said that she had it done once - to see what it was like. She said that it was extremely painful. She also said that she didn't talk to many people who had success in it. I noted that maybe that was because it is so painful that not too many people do it and it isn't very popular.

I had a deep tissue massage once. I kept telling the MT to back off, that I was tensing up because it hurt too much, she insisted on continuing - that 'it would help'. Well, not only did I feel extremely bruised for weeks, but my constant spasm was even worse!

My experience was neck spasms. They begun at 19 and just kept getting closer and closer together. At first a week or two on muscle relaxants would help. Then it just got to the point nothing helped. I went to several PT's and several chiros - they all made it worse. It was even worse with my pregnancies - I think because we produce a hormone that makes our ligaments worse. Long story short, after 15 years I finally went to an ortho (not that I recommend them, by God's grace he helped). I filled out a pain chart and he knew exactly what it was - I'm tall, and I stand with my head forward and a little down - my muscles were in constant spasm. Also, all the chiro didn't help because I couldn't hold an adjustment - too weak. The PT's I went to pushed me too hard and I spasmed more. Again, by the grace of God I found an amazing PT. She had me do a few specific (easy, gentle) exercises and within a few weeks the spasms

stopped. It has been several years with no problems. If I do something to strain those muscles (like painting) and recognize the early symptoms, I just do my exercises and I'm fine.

I guess what I'm trying to say is, you need to find out the source (if you can) so that you can address it from that angle. In the meantime, pain meds wouldn't hurt. Maybe will never know the cause. If you want to come to the Pacific Northwest you can see my amazing PT - she's fixed up everyone I know.

Best,

[Guest guest]

A friend has some skin tags and those red dots (that are usually Bart). She bathes in MMS and her skin is clearing up.  One of the red dots slowly came off, it was hanging by a thread like root for a few days.

 

I have persistent skin lesions.  Is it good for that?

To: Lyme_and_Rife

Sent: Wednesday, June 1, 2011 8:27 PM

Subject: Re: Dealing with pain (was) s/c and mms

Hi Barb,

There are a lot of answers to your question, but in short there are two kinds of MMS, MMS1 is a liquid taken internally, later on used transdermally, it is effective at killing almost all pathogens, does not cause encysting, breaks up biofilms and cysts and oxidizes heavy metals... MMS2 is a powder, this is used with MMS1, but usually not in the beginnig, it is actually hypochlorous acid, same acid in our body that the immune system uses to kill pathogens...

Here is Jim Humble's link, he discovered MMS1 and MMS2... On the left are the protocols, on the right some of the things MMS is used for.. I have plenty more answers if you have questions after reading this link, including where to buy and how to slowly start using MMS... Very inexpensive, easy to use..

http://jimhumble.biz/

Take care,

Jim

> >

[Guest guest]

I don't think I have morgellons like lesions, nothing coming out of them.  I get

the small berry like welts and I scratch at them to open them up and then put

alcohol on them trying to kill whatever caused them but then get a scab that

doesn't heal or take a very very very long time to put it mildly!

To: " Lyme_and_Rife " <Lyme_and_Rife >

Sent: Friday, June 3, 2011 12:07 AM

Subject: Re: Dealing with pain (was) s/c and mms

Barb-

Do you have the Morgellons kind of skin lesions? I have dealt with

them for a long time now. No topical makes much of a difference. You

really have to go at it by treating the pathogens from within. They

are likely Bartonella related mixed with fungal pathogens. MMS baths

may help some but they will start healing permanently as you treat

Lyme and coinfections.

Aandraya