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bobsyouruncle
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Posted: Fri Feb 20th, 2009 05:56 |
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Hi
If you follow my posts you will see some similarity.
I started with stage 2 lung sarc, but now have a mass in my pituitary gland (which regulates hormones). I also have Carpal Tunnel and Radial Tunnel Syndromes, which causes tingling in my hands. It is hard to know what causes what symptoms, however, a good read of sarc symptoms on the net, will usually show that many Sarc victims experience anxiety, depression, and Carpal Tunnel type symptoms, amongst other things. I have found the disease to be a bit like christmas tree lights (using someone else's words), you never know which light will go on next. You don't need a specific diagnosis (e.g. a brain mass) to have the anxiety or other symptoms in my opinion (non medical of course). I think it just goes along with chronic disease. I have read that microgranulomas, which don't show up on typical scans can be a source of problems. I had huge anxiety the first time my sarc was active between 2000 and 2003, which somehow receeded for a few years before becoming very active in 2008.
I take meds for anxiety. The meds I take can be taken when needed. So I am not constantly on them. I take a Xanax/Xanor (0.25mg) when I have an episode. I have not completely worked out what brings on the episodes, but stress and sunlight seem likely. Rest (lying down in a dark room) also seems to work wonders. Dr Marshall makes some comments in other places on using Valium (I think he used it).
In the last 6 weeks I have seen an opthamologist, endocrinologist, neurologist, and pulmonologist. So I have some idea of what you are going through. Finding new symptoms and get to terms with chronic illness was somewhat traumatic for me and you 'absorb' this new reality and identity. However, it only took a few weeks for me to get through much of that and start the focus on getting better. I have found that my blood tests are not always definitive (some are), but many are just subclinical or in the very high or low.
Good luck. I'd suggest you keep reading around the site, as I have found so much that helps me. I can only share from my own experience
Bob
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Sarcoidosis 2000. Sjogrens. Pituitary adenoma. Insomnia. Arthritic/muscle pain. Fatigue. DDD? Skin. D25Jan09 22.7, D25Nov09 18.8, D1,25 67.7 Jan09. Ph1 2 March 09. Ph2 9 May 09 NonMPmed: Lexapro. Ambien. NoIRs. Light/sun limited.
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Chris
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Posted: Fri Feb 20th, 2009 23:32 |
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Matt,
A bit of valium can help. It doesn't take much, but can be helpful especially when taking mino or clindy.
http://www.marshallprotocol.com/forum32/7785.html
Chris
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sarcoid since 1983 (or much earlier), MP since summer 2004 Chris' story
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matthew.gatenby
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Posted: Mon Feb 23rd, 2009 08:32 |
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ok i am a few days in on the benicar , i am feeling good , i have done the most i have in ages
seem to be getting as little photosensitive , pit of pain in the temples whaich is new..
but apart form this .. i am feeling good , i dont know wether its the positivity from what i am doing but , yeah .. i feel really good.
anxiety less
tiredness less
general aches less
still abit of sweating
asthma has picked up since on benicar
but then i feel iam breathing deeper
brain fog has dropped
tinitus is minimal
i know this olmetec is working and i have not started the antibiotics yet, just makes me feel real positive
avoiding d foods ..
been bad with coffee and alcohol , but working on it
blood presure been 120/73 last 3 days
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Ph1 Nov 08/Mod Ph 2 May09/Phase 2 12Sep/ 25-D 26.4 ng/ml Apr/ DX Lung Sarc 08/08 elevated ALT/Avd vit d/Olmetec 4x/mino 100mg Zith 74mg| ABC of MP|
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matthew.gatenby
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Posted: Tue Feb 24th, 2009 21:34 |
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hi all update as i am progressing along..
been avoiding vi d foods
having 1 beer a night .. seems to help my appetite
right flank pain 5I. (intermitant pretty bad all day)
started taking milk thistle
nausea 2C.
i am now reading things about folate and sugar
how much avoidance do i have to take of these foods.
i am checking lables of all bread i eat ( dont eat that much the odd sandwich)
but it is bakers bread wholemeal . does not say added folate.
and sugar apart from the coffee , i dont really have any..
i do like to go out for meals , i work a lot but i am taking the plainest meal does anyone else go out for dinner what do they order..
i do just meat (beef or chicken) and vegetables .
no knowing the cooking oils etc is probally not the best but with the hours i work, i am just trying to do the best i can and get more organised and improve my diet as i go along ..
at home i mainly eating fruit .. dinners are just meat and veg..
and yeah theres potato in there my g/f is russian and well the chance of not eating a potato is like the irish not drinking guiness
id like to know people like myself that cant or are trying just to make sensible alternatives to their diet and make restrictions .
i am also a black tea addict , but i am substituting for green tea, and trying to limit my coffee to 2 cups today until i can get it down to one with no added sugar.
If i do this all of a sudden , and just jump into a really restrictive diet i dont think ill manage to stick to it.
i am eating nuts for snacks unsalted ..
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Ph1 Nov 08/Mod Ph 2 May09/Phase 2 12Sep/ 25-D 26.4 ng/ml Apr/ DX Lung Sarc 08/08 elevated ALT/Avd vit d/Olmetec 4x/mino 100mg Zith 74mg| ABC of MP|
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Cynthia Schnitz
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Posted: Tue Feb 24th, 2009 22:11 |
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In the US, you can usually identify B vitamin fortified breads by the fact that they will list the % daily values of some of the major B vitamins on the label, and as I recall, the numbers will be over 10% for fortified dreads, and under 10 % for non-fortified breads. Maybe someone with a loaf of fortified bread in their household can look on the label to see typical fortified numbers for some of the b vitamins. I only have non-fortified bread in the house right now, and there is no list of % values on these.
Cynthia
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Ph1 10/08 Ph2 12/08 Ph3 6/09 125/25D 47/43 preMP 25D14 12/09 Calcium anomaly(gone?),Spondylitis,early Diverticulosis,early AMD,TypeII Diabetes(?) MyStory
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matthew.gatenby
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Posted: Sat Feb 28th, 2009 05:42 |
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saturday the 28th
had a few glasses of wine last night .. dont feel all the better for it .
but i have been travelling ok on the olmetec.
in fact it makes me feel pretty good .. which mean i going to fee the mino  
perhaps it wont be too bad as i was prescribed some doxy a few weeks before starting marshall protocol and i tell you i felty that i was the sickest , .. i was on benicar at the time for blood pressure .. i tell you if thats how its going to be i think i will manage..
i have had abdominal pain on the right for weeks now , had xray , had mri , doctor no idea..
trying milk thistle as it could be liver pain. they also gave me some tablets for nausea as they think i have an ulcer ..
my sisters bday today and my best friends bday today... so should be a good night just rested today so i can go and hang out for a few hours..
i seem to get bored a lot with visiting etc these days
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Ph1 Nov 08/Mod Ph 2 May09/Phase 2 12Sep/ 25-D 26.4 ng/ml Apr/ DX Lung Sarc 08/08 elevated ALT/Avd vit d/Olmetec 4x/mino 100mg Zith 74mg| ABC of MP|
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Dr Trevor Marshall
Foundation Staff
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Posted: Sat Feb 28th, 2009 21:48 |
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Matthew,
You were lucky that the inadvertent prescription of Benicar and Doxycycline didn't land you in hospital.
It is key that you become more precise than "they also gave me some tablets for nausea," or you may still end up in intensive care. You are very ill, and until you recognize that, you need to be really careful about what drugs and supplements you ingest.
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matthew.gatenby
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Posted: Sun Mar 1st, 2009 04:45 |
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i was lucky , i can tell you i was ill. from the tablets .
my general symptoms in crease 10 fold for the few days .
i was not on or aware of the marshall protocol at the time and i felt stupid
asking wether i could be having herx when i had no test nothing .
the doctor was perplexed why i thought i was sick since taking the antibiotics...
i check all medications against any publications
i ask about all medications on the forums.
and basically my point at the moment is unless its absolutely necessary .. i dont take it .
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Ph1 Nov 08/Mod Ph 2 May09/Phase 2 12Sep/ 25-D 26.4 ng/ml Apr/ DX Lung Sarc 08/08 elevated ALT/Avd vit d/Olmetec 4x/mino 100mg Zith 74mg| ABC of MP|
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JoshR
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Posted: Sun Mar 1st, 2009 15:54 |
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Dr Trevor Marshall wrote:
It is key that you become more precise than "they also gave me some tablets for nausea," or you may still end up in intensive care.
He did mention that it was Metoclopramide earlier in the thread.
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 Ph3Feb09 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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Dr Trevor Marshall
Foundation Staff
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Posted: Sun Mar 1st, 2009 21:57 |
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Oops - thanks Josh
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matthew.gatenby
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Posted: Tue Mar 3rd, 2009 03:15 |
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start 25mg mino every 2nd day from tomorrow.
todays symptoms
tinnitus
headache
right flank pain
diziness
nausea
have been having some good days since being on benicar/olmetec
today is not one of them.
plan on being on 25mg mino for 1 week . depending on symptoms.
Have appoing with my mp doc on the 20th March , i hope to be on 50mg by this time.
blood tests and xray will be taken @ beginning of april.
but will take it according to how i feel due to work family commitments.
hope to be entering phase 2 if possible in april as i have planned some time off to correspond with change.
however will adjust holiday if not ready at this time .
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Ph1 Nov 08/Mod Ph 2 May09/Phase 2 12Sep/ 25-D 26.4 ng/ml Apr/ DX Lung Sarc 08/08 elevated ALT/Avd vit d/Olmetec 4x/mino 100mg Zith 74mg| ABC of MP|
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matthew.gatenby
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Posted: Thu Mar 5th, 2009 02:01 |
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2nd dose of mino ..
relatively no symptoms worse than usual.
do have some skin irritations like pimples on me , bit strange ..
but generally going ok .
i am photosensitive though. this occured yesterday for the first time. its not very bad but the noirs are great , inside fine , outside . not visable need them, its like everything has glare or reflerctive .. its kind of cool
like my noirs
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Ph1 Nov 08/Mod Ph 2 May09/Phase 2 12Sep/ 25-D 26.4 ng/ml Apr/ DX Lung Sarc 08/08 elevated ALT/Avd vit d/Olmetec 4x/mino 100mg Zith 74mg| ABC of MP|
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Debz
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Posted: Thu Mar 5th, 2009 04:13 |
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Hi Matthew,
I am not a moderator, but I have a Sarc lung dx. The Marshallprotol has a "study site", ABC's search, a Physicians MP manual, Marshall Protocol 5 CD's, "Life styles", all are very helpful. I enjoyed the "MP Success Stories" also. There are 5 recommended MP books on L-form bacteria, Microbiology Steath Pathogens (Lida Mattman)," Queer Blood" and "Cancer Micro" and "Four Women Against Cancer" (Alan Cantwell). The MP online videos are.....awsome!
I read that MRI's don't show brain bugs. Mino is better than Doxy to get to the blood brain barrier and no substitutes. Benicar q6hrs docks on the VDR, any more than that is not effective, unless q4hrs and 20mg extra under the tongue for a strong herx from light or immune system kicking in, or a sudden path load die off. My pins and needles went away after walking by the time I finishes ph-1. All the Meds are low pulsed qoD or q10D and FDA approved, prednisone is not. Coffee depletes body minerals, is cytotoxic, and contains capasine(tea too); which competes with benicar for the vitamin D receptor. Alcoholics don't herx untill they stop drinking. Beer makes superb bacteria - they get fed and you feel less stressed(Co2+H20+albumin=bacteria), tea steep about 20 seconds only.
I've talked to 6 doctors about MP and the responses are: microbiologist's are smart guys, where did you get the MP Physicians Manual, what is the Web site, you know more than the doctors do, no comment just listen, yes I have a Sarc patient and I'll look that site up. MP study site is addicting.
This past 11 months new herx start as old ones resolve and all 7 body systems are affected. Secosteroid D affects genes, hormones, chemicals of all senses. Yup.... the Mercks manual says that Bacteria, viruses, and diseases like Hashimotos cause diabetes.
I have my basic yearly labs, 6mo D-25 and opthalmalogy check-ups thats it.
We are all in this together,
Debz
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I need an mp Dr. in my area.
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matthew.gatenby
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Posted: Thu Mar 5th, 2009 07:49 |
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debz ,
thanks for your post , i guess id just to talk a few points out with you
i am on the mp and i read.. firstly so thanks for your input , but i read i read i read , and now since i have no brain fog i am more into it .. yes addicted .
my comments on this site are for me to vent and query .. but mainly to vent
when i feel ill i am here
however i find some people read my post and comment on old news
i was prescribed doxycyline for a completely unrelated condition at the time un aware of the mp .. and i was taking olmetec in small dose for bp and i found the mp wondering why i was so ill. that particular week. i wasnt bad ill but i was bad enough..
i had seen the mp site after being diagnosed with sarc , but my lung specialist said to me "stay off the net . their only the bad cases " asshole .. sorry theres a vent .
"I read that MRI's don't show brain bugs .. "
what reading where.. i have a friend witha bacterial infection of the brain the mri was the only imaging technology that detec ted it and in fact is a commonly used imaging tecnique in diseases such as lupus and the rhematoid family . which are "assumed" to be th1 diseases.
My personal belief is that the pet scan is probally the end all and be all of techniques
but as a moderator on this site said why bother , it will just be another thing that cannot be fixed
now benicar q4 vs q3 . do you know that benicar causes liver damage , albeit a protective drug from the die off of bacteria . that does not mean the chemical copmposition of the drug does not have negative effects on bodily organs.
i am on q4 however .. read my signature
its a pro vs con scenario however for some in my belief
the same goes for the effect of antibiotic medication and the liver.
ok now next the albumin causes bacteria
Co2+H20+albumin , now albmin highest source is egg white allowed on the protocol , and i think you have reached a tangent non assisting to your therapy.
folate being a way more restricting compund than any other
and h20 is water And co2 .. we produce it in our blood. i dont know where u got this formula , but i would forget it .. try to eliminate h20 and c02 from your body and you = dead and 5 % your original body weight .
Coffee depletes body minerals, is cytotoxic, and contains capasine(tea too); which competes with benicar for the vitamin D
i agree with that it is cytotoxic , but in moderation , which i am learning i dont see a great impact .. and as for the competion for vitamin d .. when we are trying to reduce the level. that sounds to me beneficial, and in my readings i have seen nothing to reinforce that .. please send me your studies as id love to read them .. for curiosity sake , these articles need to be posted and moderated .. for there validity.. of course i dont want the bad news if they are true .. but so far alcohol and coffee in moderation have not been seen as issues.
i am more looking at the protocol itself , no bacteria , and how it works , the receptor blocking the activation of the immune system .. the way the combinatyion of antibiotics effect the ribsones , and how they do it ..
alcohol having no effect on the tetracycline family of antibiotics unlike he penicillin based family
no you see the protocol works , in some not in others.. if diet apart from folate and vit d are esential .. then the marshall protocol should come with a formulated diet.
and then it should be varied by those once they accept and knopw the rules.
the same as the medication if there is no substitutes. then the diet is no compromise .
if the technology doesnt resolve the problem because of too many contravening factors then it does not work.
that is one of the first rules in any process or protocol.
it should be formulaic . have criteria , dependancy and measurable points and end goals.
if it has specific requirements they should be listed , not guess this read this look at this , this si what youve done wrong because ..
i dont agree .. its either the protocol or its not.. everyone adding somethign they believe into the mix does not sit well with me.
the protocol is .
benicar q4
antibiotics , mino , clindy zith
benchmark is 125 d and 25 d level
foods ,
avoid vitd , folate .
caffine and alcohol moderation .. the end ..
thats the protocol that works or does not .
andf if it requires refinement then it needs to be done at the right levels
____________________
Ph1 Nov 08/Mod Ph 2 May09/Phase 2 12Sep/ 25-D 26.4 ng/ml Apr/ DX Lung Sarc 08/08 elevated ALT/Avd vit d/Olmetec 4x/mino 100mg Zith 74mg| ABC of MP|
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matthew.gatenby
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Posted: Fri Mar 6th, 2009 22:34 |
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taking the antibiotics then next day , i take my antibiotic with dinner ..
i wake up witha really runny nose .. and that just rocks .
sorry i am chuffed about this .. always just had stuffed sinuses .. always and no matter the spray the whatever id never get a runny nose .. its strange i dont feel like ive had a runny nose for years ... just something new.
adding it in here so i can read back ina bit and laugh at myself
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Ph1 Nov 08/Mod Ph 2 May09/Phase 2 12Sep/ 25-D 26.4 ng/ml Apr/ DX Lung Sarc 08/08 elevated ALT/Avd vit d/Olmetec 4x/mino 100mg Zith 74mg| ABC of MP|
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matthew.gatenby
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Posted: Sun Mar 8th, 2009 21:45 |
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i am getting numbness in my forearms fingers and 1 or 2 toes on my feet ..
this seems to be slowly coming on over the past few months.
does anyone have any sugesstions , exercises steaching i cando to make it feel better.
this symptom i feel really worried about .
is anyone else experiencing this.
or have had these symptoms with sarcoid .. have they gone away. thanks.
i know there is a condition called
CIDP, and it sounds very similar .. i dont think it is worth going to get diagnosed at a neurologist as it sounds like what i have ..
obviously i am not having a good day.. just need to type ..
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Ph1 Nov 08/Mod Ph 2 May09/Phase 2 12Sep/ 25-D 26.4 ng/ml Apr/ DX Lung Sarc 08/08 elevated ALT/Avd vit d/Olmetec 4x/mino 100mg Zith 74mg| ABC of MP|
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bobsyouruncle
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Posted: Mon Mar 9th, 2009 05:44 |
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Hi Matt
I get this a lot. Almost every day since November last year. A review of scientific research on the net will show that Carpal Tunnel Sydrome and parathesias are very common amongst Sarc sufferers. As I understand this can be due to inflammation (and subsequent pressure on the nerves) or micro growths (micro-granulomas, as they are commonly called in conventional wisdom on Sarc) on the nerves themselves. I find they can affect any of my fingers or toes. However, most frequently the numbness is in the small and ring fingers, radiating up my forearm (at times it even feels like someone hit me on the elbow with something hard). As I understand this is suggestive of inflammation being further up the arm (not at the wrist, as with Carpal Tunnel Syndrome) either at the elbow (Radial Tunnel Syndrome), or possibly even at the shoulder or spine. The same tends to happen with toes, where numbness/tingling can be the 1st and 2nd toes, or be more generalised. I also get parasthesias (formal name for numbness and tingling) in my palm and fingers more generally on some days - suggesting multiple points of inflammation.
From what I can see from reading, parathesias are par for the course with Sarc, and obviously with herxing, they may become more apparent. But from everything I have read of those on the MP and those that go the conventional route (Prednisone) they almost always go away with the inflammation receding.
I have even had facial parasthesias of late, which also unsettling. After a few weeks of parasthesias I started to notice my hands being swollen often (e.g. tight around wedding ring) and my hands became dry often (common amongst folk with neural inflammation in this area). Later my hands began to ache (in the bones), which was the start of arthraglia/arthritis, which seems to alternate with the parathesias. I have found stretching my fingers and hands helps somewhat, but I am concerned that if overdone, it might enhance inflammation. A very interesting test for CTS is to tap your finger (held at 90 degrees, like a hammer) on the inside of your wrist. As you tap around you may find a spot on your wrist which when tapped causes a feeling like an electric shock to radiate through your hand. This is classic sign of CTS and applies to the elbow too. With the tissue being inflammed in the area, the tapping offends the trapped nerve and causes the shock.
Hope it helps. I have read a lot on this one, as it was one of the main symptoms that scared me into doing something about the Sarc. Now that I know what it is, I really don't worry about it much.
I have read a little about CIDP and my Dr mentioned it too. However, I think it is all part of the underlying inflammatory disease of Sarc. I think most neuropathies will seem very similar, but have different causes. So with an existing dx of Sarc, it makes some sense to write this kind of symptoms off that cause. In other words, the neuropathies/parasthesias are secondary to the primary disease of Sarc/Th1. If you had nothing else, then CIPD would seem like a reasonable primary dx. I had lumbar punch and a whole lot of other tests just in case, which was more trouble than it was worth. My neurologist exhausted my benefits for seeing GPs and specialists in 1 week (I have to pay doctors out of pocket now, unless I am admitted to hospital). You will notice that the treatment for CIDP is prednisone and other immunosuppressive drugs - which is not going to get you anywhere. So I really believe its something that will go with the Sarc and the Th1.
Thanks for all your posts. I also started with the runny nose recently in the last 3 days, so thanks for the heads-up.
Bob
Last edited on Mon Mar 9th, 2009 06:20 by bobsyouruncle
____________________
Sarcoidosis 2000. Sjogrens. Pituitary adenoma. Insomnia. Arthritic/muscle pain. Fatigue. DDD? Skin. D25Jan09 22.7, D25Nov09 18.8, D1,25 67.7 Jan09. Ph1 2 March 09. Ph2 9 May 09 NonMPmed: Lexapro. Ambien. NoIRs. Light/sun limited.
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matthew.gatenby
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Posted: Mon Mar 9th, 2009 07:04 |
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Bob,
your a good mate , and heads up runny nose , i kind of found that funny ..
must be the warped aussie thing again..
and mate if we are travelling down the same path .. you might get the sense of smell returning.. i could smell the trees and the rain this morning on the drive to work..
it iws increadibly strong.. and really amazing .. i can wait to smell that fine port again one day.. it amazing that i never really realised i had lost it thill it returned...
its only brief but so be it ..
i must of read the same article on cfids you did and i just shook my head ..
again steriods and no idea , i mean no one has come up with anything else that resembles a reason or a cause for these diseases.
which i find astonishing .. and i cannot wait till the marshall protocol becomes understood and others apply this level of thinking.
if the people with the disease , can see this has relevance .. there was something
that makes us believe it will work .. it just rings too many bells..
and i also love the bit about the primary dx .. that was spot on .. you have this so .. they just say well thats part of it...
if i didnt have sarc it would be cifds after many pins and needles and scans and thingymy bobs that prove no result they will then go .. ohwell it will be this because it looks like a duck and quacks like one ...
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Ph1 Nov 08/Mod Ph 2 May09/Phase 2 12Sep/ 25-D 26.4 ng/ml Apr/ DX Lung Sarc 08/08 elevated ALT/Avd vit d/Olmetec 4x/mino 100mg Zith 74mg| ABC of MP|
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JoshR
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Posted: Tue Mar 10th, 2009 09:56 |
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| Another thing that can cause paresthesia is swollen lymph nodes pressing on nerves, and just moving the affected limb around or some gentle massaging can get the lymph flowing and make it better.
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5/6 CFS criteria, 125D36 Ph1Jul08 Ph2Sep08 Ph3Feb09 25D8(Sep08) NoIRs covered up (except hands) low lux home minimal light exp r/t work
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matthew.gatenby
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Posted: Wed Mar 11th, 2009 01:24 |
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me being retarted and double posting
Last edited on Wed Mar 11th, 2009 01:45 by matthew.gatenby
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Ph1 Nov 08/Mod Ph 2 May09/Phase 2 12Sep/ 25-D 26.4 ng/ml Apr/ DX Lung Sarc 08/08 elevated ALT/Avd vit d/Olmetec 4x/mino 100mg Zith 74mg| ABC of MP|
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