I'm Terrified RA people please give me insight

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Morticia32
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Date Joined Feb 2006
Total Posts : 59
   Posted 2/23/2006 9:23 PM (GMT -7)   
I am so new to all this, and i really don;t know what i should be expecting of my body changes.
 
Right now my feet,toes,fingers are blue color ! My ankles are very swollen. My hands are burning with pain. My knees feel like they will break under my weight. My right leg is partially useless, i cant lift it up or move it ie; going up stairs, getting out of bed, rolling over in bed. I can stand on it ok, just move it burns with pain.
 
I am assuming others have these same problems too? Also in the mornings, i shake uncontrolably like im in shock or something.
 
sad  
Morticia

Ducky
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Date Joined Mar 2005
Total Posts : 3199
   Posted 2/24/2006 6:55 AM (GMT -7)   
Hey Morticia, remind me, which arthritis do you have? Your body is gonna do some weird stuff, it is in shock so to speak... and as much as the disease is trying to change your body, your body is trying to fight it... What meds are you on? How long do you shake in the mornings? Rest easy and take good care... let us know how you are doing - duck
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


Ducky
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Date Joined Mar 2005
Total Posts : 3199
   Posted 2/24/2006 6:58 AM (GMT -7)   
Ok, I'm not completely awake yet, the thread is called "I'm Terrified RA people please give me insight" and I asked you what arthritis you had... sorry... I need to start drinking coffee again...
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


Hey Hubby
Regular Member


Date Joined Mar 2005
Total Posts : 156
   Posted 2/24/2006 11:08 AM (GMT -7)   
Ducky, more details in this thread
Knowledge is an unending adventure at the edge of uncertainty.
Jacob Bronowski

You can move the world with an idea, but you have to think of it first.

Hate is like acid. It can damage the vessel in which it is stored as well as destroy the object on which it is poured.


erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 2/24/2006 4:03 PM (GMT -7)   
hey Morticia,
 
oh dear.  first of all, should you feel that something is terribly, terribly wrong....go to the ER.  i know that RA is a chronic progressive disease, and i have felt foolish going to the ER for RA related problems.  but the ER physicians said to me that even though it is a chronic disease, there are at times, acute phases that need immediate attention.  so if there should be a time where you absolutely never felt worse in your life...if you can't see a regular doc, go the the ER.  fluids and pain meds and steroids will help a very bad RA flare.
 
the blue coloring can be a number of this.  Reynaud's phenomena is related to RA and AI conditions.  the area, usually the hands & feet & ears get painful...burn...turn red, blue and  pale.  they could stay blue too from the blood vessels constricting.
a person with RA can develop small vessel inflammation making the lower extremities painful, burny, and discolored....so if this is a problem that you are having, it needs to be evaluated @ your next dr visit.
 
the shakiness might be: you're nerves!  you're a nervous wreck! and i don't blame you, look what's been going on! 
could be from medicines.
could be from your blood sugar being low in the morning. or even your blood pressure a little low.
 
there are many times when i'm at my boyfriends house (and this scares the heck out of him) that when i'm just waking up in bed...i feel really awful.  hands trembly, cannot walk because the legs are trembling. it feels as though i may pass out, and sometimes i do.  and it is an awful, awful feeling. 
what i do is:  make sure i don't MOVE!  get myself on the couch or stay in bed; get some orange juice or gatorade and drink it, i take a seizure med because i'm not sure if that is what it may be....but it passes after an hour or so.
be sure to tell the doc this.  you may need some other things checked out.
 
like for me, the RA has effected my heart & lungs...so i don't know if that is why the shakey thing happens.  i do have a seizure disorder and i do have a brain anomoly...so WHO KNOWS? also, with the Crohns, i get severely dehydrated so THAT could be it too! oy!
just be very careful.
the MOST important thing for you to do at that time is to prevent falling by staying put and lying down, and drinking some fluids with some sugar in it.
 
how is everything now?
be careful & get lots of rest.
write back when you can.
thoughts with you,
erin
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


LeeLee123
Regular Member


Date Joined Jan 2006
Total Posts : 49
   Posted 2/24/2006 4:58 PM (GMT -7)   
Hi Morticia :) I don't know what this is exactly, but I have been to the emergency room 4 times in the last two weeks. Every time it turned out that it was a good thing. For me they have given me steroid injections, antibiotics, pain injections, and phenagan,and I don't know what. I have been in a panic like and over anxious, but still I should have gone. So my advice is that if you have too bad of a flareup, just go. You won't be making a mistake. You sound like you could use the attention. I have heard of some weird RA flareups though. I hope you are much better soon.

Morticia32
Regular Member


Date Joined Feb 2006
Total Posts : 59
   Posted 2/24/2006 6:30 PM (GMT -7)   

Ok whew i feel better knowing others have this too. Thank you. The shaking, i figured was because as soon as i open my eyes in the am, the pain is overwhelming. And this is the worst pain ive ever had, I just finished battling Endometriosis for 15 years and that was easy compaired to this.

I think my body just wakes up in complete shock, from the swelling, pain and damage being done.

Takes me a good 15 minutes to get sitting up in bed, then i have to talk myself through the standing up part. Once im up i dont move for a few minutes, to get my balance and get ahold of the shakes. Then i shuffle/hobble/limp/moan/wimper straight to the Vicoden bottle, then to the coffee pot.

Oh and going to the potty, omg what a drop down it is to the seat! Im suprised i havent fallen in yet. And im only 4ft nothing, i feel for you tall people reaching the pot must be hell. tongue
 
I took my second week of MTX today, and so far so good no puking for me.

Ducky
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Date Joined Mar 2005
Total Posts : 3199
   Posted 2/24/2006 6:33 PM (GMT -7)   
Morticia, you crack me up... you are fitting in so well with us! :) Glad to have you here...
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds -  Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


Morticia32
Regular Member


Date Joined Feb 2006
Total Posts : 59
   Posted 2/24/2006 6:43 PM (GMT -7)   
awww thanks Duck ;)
 
Well i talked to a naturalpath today, this lady ownes a herbal company based in Africa and she has given me 3 differant herbal remedies to try for 3 months along with my regular meds. She says that RA has to always be orignally triggered by something. She says "Micoplasma" is trigger. It has something to do with a virus that attacks the blood and joints in the body, and takes over and can cause RA. She says with these herbs, we will be able to work on the original problem, which will not cure the RA but might be able to control it much better then the harsh meds our doctors put us on. She says shes being doing this for 15 years and she cured her Lukemia Cancer with her meds so..... I will let u all know how it works for me, and if it does i will pass along the information.
 
 

erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 2/24/2006 7:14 PM (GMT -7)   
hey morticia,
 
very interesting.  i too believe that RA is triggered by a causative agent.  my theory is that it's triggerred by bacterial or viral infection.
 
i had Lyme disease for over a decade and was only treated for it in 2001 to 2004. (started showing positive RA symptoms when i was 16! and tested positive for RA at 16 too!)  in the meantime, i had extensive lab work and DNA studies done and it's a pretty done deal that the untreated Lymes did in fact cause/trigger the RA. 
 
gosh...having Lymes was a piece of cake compared to this!  i would rather have my appendix taken out every week than go through RA!  really...it was easier!  so i hear ya!
and then when we have one AI disease, you're more prone to other AI diseases....and having Crohns on top of RA!....talk about plopping yourself on the bowl!  i've black n blues from my boyfriend's ceramic toilet ( i have the cushy seat ).
 
laughing and coping with humor is the only way i get through this.
i want to cry most times.
but when you deal with disease that will not go away, you can't cut it out, cure it...you learn to cry by smiling.  sad but true.
 
mornings are the worst most of the times.  so i know what you're talking about.  i hate having to sacrifice taking a shower if i have to go out in the morning.  can't do both!  bad endurance problem.  good thing i, in general....smell pretty nice. LOL.
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


Morticia32
Regular Member


Date Joined Feb 2006
Total Posts : 59
   Posted 2/24/2006 8:35 PM (GMT -7)   
This is an explanation of what the lady was telling me
 
 
makes sense, first thing she asked me was.... in the past few years have you been extremely ill, with phemonia or bronchitus? Last winter at this time, i came down with a viral flu that a friend brought back from Peru or some place like that. Our whole circle of friends got very sick some wound up in hospital, i was in bed for close to a month. And ive had the arthritus symptoms off and on mildly over the past year till now, full blown.
 
We shall see, if you want her website let me know. Doesnt hurt to try and she says it wont hurt the current mediction program you are on.

LeeLee123
Regular Member


Date Joined Jan 2006
Total Posts : 49
   Posted 2/25/2006 2:36 PM (GMT -7)   
Wowww!!! What information with that research, Mortica! I have not read anything like this. It sure does sound like hope. The research looks good to my eyes. I picked up on one of the studies that along with the antibiotic therapy a list of vitamins, minerals, amino acids, etc. were also given. Well, I saved that site. I want to read all that again. Let us know how you think the natural herbs are doing for you. I am sure this will take some time to work, but it would have to be good for you at least in some ways. I am taking the B vitamins, C, potassium with zinc, magnesium, and selinium, calcium, fish oil capsules, curcumin, cinnamon, a honeybee combination of propolis, royal jelly, raw honey, and pollen,and biotin. Of course I take the folic acid, and I see I need to take some acidolphus also. I dropped the MSN and CoQ10 whatever, and the chodrotin and glycosomin. I have misspelled half of these. I plan to see about getting some kind of multivitamin that has all of that in it in enough amounts. I am very interested in this Morticia, so I will be back with you. I feel that nutrition is very important. I feel I take too much. As my condition has worsened, I have gradually added things. My blood tests have shown to be low for potassium and calcium and iron from time to time. Thanks for this information. I hope you do much better. :)

Morticia32
Regular Member


Date Joined Feb 2006
Total Posts : 59
   Posted 2/26/2006 9:18 AM (GMT -7)   
Ya it looks interesting to me to Leelee. This naturalpath doctor i talked to works in Africa with shamans there. And has all her plants shipped in from Africa after she has personally tested each one. I will get my first dose of them next week. I am praying they will work, she says they will and that my body was attacked by mycplasma toxins at one point in time. They take over the body and attack joints and blood cells, tll the body starts attacking it also, hense the development of RA. Last winter when i was so sick, i thought it had to be some sort of virtal infection we all had. My g/f made me up some anti-virtal herbal tea for a week and it helped me get better. Oh it would be so nice to be able to rid the body of all these posions. Ive got my fingers crossed *with claw hands* hehe.
Diagnosed: Hypothyroid 1990, Endometriosis 1997, Agrophobia 1998, Objective Tinnitus 2004,Rhematoid Arthritus Feb 2006.
Procedures Done: Gallbladder Removed 1994, 3 Endoscopes, 5 Laps for Endo, Hysterectomy 2003, Angiogram 2003.
Medications now: Synthroid, Lexapro, MTX, Lortab.


erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 2/26/2006 3:35 PM (GMT -7)   
hey ladies,
 
way to go on the good find!  as long as the person dealing these products is credentialled  & legit, you should get terrific results.
i believe many herbs, flowers, roots help AI diseases & inflammatory diseases immenseley.  especially herbs and spices that you can cook with!
 
also, look into homeopathy.  i know many nurse practitioners that specialize is homeopathy and they tell of great success with their patients.  everything is worth a shot as long as no harm is done.
 
the best of success to you!
erin
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


Morticia32
Regular Member


Date Joined Feb 2006
Total Posts : 59
   Posted 2/26/2006 6:04 PM (GMT -7)   
This lady is a friend of a friend, she is the owner of this herbal company and a multimillionaire. Licenced Nathropath MD. She has 15 years of experience in developing her own product. She told me, she started it all because she had Cancer and managed to cure herself. She has a very good reputation from what ive been told.
Diagnosed: Hypothyroid 1990, Endometriosis 1997, Agrophobia 1998, Objective Tinnitus 2004,Rhematoid Arthritus Feb 2006.
Procedures Done: Gallbladder Removed 1994, 3 Endoscopes, 5 Laps for Endo, Hysterectomy 2003, Angiogram 2003.
Medications now: Synthroid, Lexapro, MTX, Lortab.


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 2/27/2006 7:05 AM (GMT -7)   
hey Morticia,
 
how's today going?
i was wondering if you & the doc were thinking of starting another medication for the RA besides just the MTX?
 
looking back on this title "I'm terrified RA...."  i'm still adapting to it.  it seems like every day is a whole new deal that you have to adapt to.  it's a situation we have to work our lives (sometimes it doesn't feel like living at all) around and it's tough.
 
like even this morning...nothing over the years has got any easier.  it's OUCH  OUCH OUCH trying to get together a cup of coffee in the morning and getting out of bed.
 
i think the most beneficial thing in dealing with RA is support and the people around you.  sometimes works better than any medicine out there.  i hope you have support and a touchstone at home, they'll be needed.
 
looking forward to reading that Rainforest website...thanks again.
take care
erin
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.


Morticia32
Regular Member


Date Joined Feb 2006
Total Posts : 59
   Posted 3/3/2006 8:16 AM (GMT -7)   
ok when my hands are deformed like claws, if something hits m fingers or straightens them in any way. They feel like they are breaking, are they breaking? Can they break just from something as simple as opening the fridge door? My ankles are grinding, feels like bone on bone sharp stabbing pain in the foot when i stand up. My legs are completely dead today, i cant even get out of this chair at the moment. My knees are to weak and sore to hold my weight. I cant even fathom a life time of this, i dont want to even think about my future. Give it 6 months and i will be in a wheelchair for sure. I have a g/f that has MS and shes in a wheelchair all the time, and im twice as crippled as her at this stage already.
 
sad  
Diagnosed: Hypothyroid 1990, Endometriosis 1997, Agrophobia 1998, Objective Tinnitus 2004,Rhematoid Arthritus Feb 2006.
Procedures Done: Gallbladder Removed 1994, 3 Endoscopes, 5 Laps for Endo, Hysterectomy 2003, Angiogram 2003.
Medications now: Synthroid, Lexapro, MTX, Lortab.


erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 3/3/2006 11:52 AM (GMT -7)   
oh my dear Morticia,
 
this is not a nice thing to go through in the least now is it?  i know the pain is unbearable both physically & mentally & emotionally.
 
regarding your hands.  physiologically, they cannot "break" from bending or touching/straightening them as you described UNLESS you have a very progressed  form of osteoporosis, the contractures are  so extreme that they are tearing the support structures of the fingers,  or bones that are so soft that they break (that's a genetic disease). 
or if someone comes along and actually breaks your hands!  now...unless Tony Soprano lives with you....i would rule that one out!  tongue LOL. and also, Morticia....please, no more bar fights!  nono LOL.  tongue   i know it's hard to give up, but we must take care of these hands! LOL.  :-)  
 
you can definitely "feel as though they are breaking"! i feel that in my feet, every step sometimes feels as though every little bone is breaking. when fluid and inflammation gets that bad, there are all sorts of crunchy, grindy, cracking sounds and feelings in the hands. mad
opening the fridge door is excrutiating for a condition like this, as are jars, toothbrushes, forks, zippers....etc.  so right now, at a time of bad inflammation, your joints seem as though they are very irritated.  sad  
 
the contractures of your hands is what worries me the most.
 
quite honestly, i feel as though your case of RA is not controlled and is getting out of hand, especially if you are getting hand deformities.
MTX is OK....but your RA i would not consider "mild" and i would really REALLY try your hardest to get on a TNF like Enbrel or Humira ASAP!!!!! 
 
you don't want to end up in a wheelchair just yet, and neither do i want to see you in a wheelchair either (although i do give one heck of a ride!  tongue ....talk with your husband and get a plan of what to do next.
 
i know you mentioned doctors are a problem right now and treatments....but i would seriously be more aggressive, and if you haven't the energy to do it, have your hubby help.  your RA really needs to get in control and slow down.
 
do you have any prednisone to take?  that can relieve a bad flare.
 
when can you see a rheumatologist?
 
if you don't mind me asking, what state do you live in?  or are you in Canada?
 
i'll do my best to find anything to help you! and info...ANYTHING!  but my truthful opinion is that you really need better treatment for the RA.
 
try to relax, i know you're in pain and worried sick.
write back when you feel ok. but  please, rest your hands though!  use warm compresses...even warm oatmeal is soothing (mushed up in a bowl and let your hands soak in it)  and Parafin wax dips, people swear by for relief of bad hand pain.
 
hang in there girl!
sincerely,
erin


Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. AS. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam; Avinza 30mg; MiraLax & too many others.

Post Edited (erin kachmar) : 3/3/2006 11:57:30 AM (GMT-7)


Morticia32
Regular Member


Date Joined Feb 2006
Total Posts : 59
   Posted 3/13/2006 11:45 PM (GMT -7)   
 
Well I am on my 3rd week of my herbal therapy i was mentioning before. And im pleased to say that my swelling has reduced by 50 percent. The pain in the joints is still there but the swelling is gone for now......
 
I am taking a herbal remedy to remove Mycoplasma bacteria from my body. And I think it might be working. Here is some more information i found about Mycoplasma bacteria related to RA.
 

SCIENTIFIC FACTS VERSUS FICTION
about MYCOPLASMA
Aristo Vojdani, Ph.D., M.T.

INTRODUCTION

Members of the genus Mycoplasma are the smallest organisms lacking cell walls that are capable of self-replication and cause various diseases in humans, animals, and plants. 

Seven different species of mycoplasma have been associated with various infections in humans.  The earliest reports of mycoplasma infectious agents in humans appeared in the 1930s, 1940s and finally, in the early 1960s.  The definite relationship between Mycoplasma pneumoniae and the primary atypical pneumoniae was established.

Mycoplasma pneumoniae
Today, M.pneumoniae remains an important cause of pneumonia and other airway disorders such as tracheobronchitis and pharyngitis.  This organism is also associated with extrapulmonary manifestations such as hematopoietic, joint, central nervous system, liver, pancreas and cardiovascular syndromes.

Mycoplasma genitalium
M.genitalium was originally isolated from urethral specimens of two men with nongonococcal urethritis.  This organism could be involved in pelvic inflammatory disease.  A DNA probe hybridization assay has indicated that M.genitalium was present in urogenital specimens collected from 60% of male homosexual patients with recurrent or persistent nongonococcal urethritis and 22% of heterosexual men with recurrent urethritis, compared with 9% of men without urethritis.

Ureaplasma urealyticum
Ureaplasma urealyticum is considered to be a commensal organism in the lower genital tract of sexually-active women and has been found at a colonization rate of 40 to 80%.  In some colonized pregnant women, ureaplasmas have been considered to be a cause of chorioamnionitis and premature delivery.  They are frequently transmitted from mothers to their infants, and this may cause various diseases which includes pneumonia, persistent pulmonary hypertension, chronic infection of the central nervous system and bronchopulmonary dysplasia.

Mycoplasma fermentans, M. pirum, M. hominis, and M.penetrans
Mycoplasma fermentans, M. pirum, M. hominis, and M. penetrans have been proposed as human pathogens and possible cofactors in HIV infection.  These organisms may contribute to the variation in the time from infection with HIV to the development of AIDS symptoms.

Mycoplasma fermentans (incognitus)
Mycoplasma fermentans is considered to be a commensal in the human mucosal tissues and has often been found in saliva and oropharyngeal of 45% of healthy adults.  Also, M. fermentans organisms have been isolated from the human urogenital tract and are suspected of invading host tissues from a site of mucosal colonization.

Although mycoplasmas are recognized primarily as extracellular parasites or pathogens of mucosal surfaces, recent evidence suggests that certain species may invade the host cells.

The molecular and cellular bases for the invasion of  M. fermentans from mucosal cells to the bloodstream and its colonization of blood remain unknown.

Also, it remains unclear whether M. fermentans infection of white blood cells is transient, intermittent or persistent.  It is not clear how these stages influence any disease progression.  The invasion of host blood cells by M. fermentans is due to inhibition of phagocytosis by a variety of mechanisms, including antiphagocytic proteins such as proteases, phospholipases and by oxygen radicals produced by mycoplasmas.

Mycoplasma fermentans is capable of fusing with lymphocytes and changing their immunological characteristics.

Mycoplasma fermentans cells are able to fuse with Tlymphocytes and change their characteristic of cytokine production.  By electron microscopy we have been able to show that M. fermentans can indeed fuse with CD4 (Molt-3) cells and induce production of proinflammatory cytokines such as IL-6 and tumor necrosis factor alpha.

Prevalence of M. fermentans in patients with Chronic Fatigue Syndrome (CFS) and comparison with healthy subjects

Using PCR and genetic probes, we were able to demonstrate that between 30 and 35% of CFS patients and 4 to 8% of healthy controls do carry the Mycoplasma fermentans genome in their peripheral blood mononuclear cells.

While PCR and genetic probes are rapid and sensitive methods for detecting M. fermentans in clinical specimens, the clinical significance of this organism in Chronic Fatigue Syndrome should be determined by further research studies.

We emphasize that M. fermentans is not the etiologic agent for Chronic Fatigue Syndrome.  It may serve as a cofactor in the induction of cytokines and other immune abnormalities found in CFS.  These abnormalities may compromise the immune system, allowing other agents, whether they be biological, chemical, or both, to exert an effect resulting in symptomatology shown in CFIDS.  Therefore, if the genome of this bacteria is detected in the blood cells of patients with chronic illnesses, treatment with antibiotics may be the logical step for its elimination from the blood.

Mycoplasmafermentans in Persian Gulf War veterans

Due to the similarity of symptoms in patients of Gulf War Syndrome and Chronic Fatigue Syndrome, we applied the PCR and genetic probe methodologies to the blood samples of the soldiers and found a similar percentage (32%) to be positive for the M. fermentans genome.  Since the percent detection of M. fermentans genome in Persian Gulf War Syndrome is similar to that of Chronic Fatigue, we believe that M. fermentans is a cofactor and not the major cause of illness in the soldiers of the Persian Gulf War.

Claims that HIV genome was inserted in mycoplasma fermentans are unfounded.

In one study, it was suggested that pathogenic mycoplasma genomes were genetically manipulated, and part of the HIV genome was inserted into M. fermentans causing a large number of disease cases among veterans.  To prove or disprove this claim, we attempted to amplify various regions of the HIV genome by using primers specific for different regions of the HIV genome in the PCR assay.  We also utilized the extremely sensitive method of Southern Blot analysis with probes specific for the HIV genome.  Using both methodologies we found no portion of the HIV genome among DNA samples of Gulf War veterans who were infected with mycoplasma.  In all cases, we found that only the M. fermentans-specific probe reacted with the DNA samples and the specific probe of HIV did not react.  The results of this experiment  clearly indicate that the above claim regarding insertion of the HIV genome into M. fermentans is scientifically unfounded.

Mycoplasma and rheumatoid arthritis

  • The occurrence of various mycoplasma and ureaplasma species in joint tissues of patients with rheumatoid arthritis and other human arthritides can no longer be ignored.
     
  • M. fermentans was suggested more than 20 years ago as a cause of rheumatoid arthritis (RA) on the basis of isolation from synovial fluids of a few patients.  Recently, with PCR methodology, the M. fermentans genome was found in 40% of synovial biopsy specimens and in 21% of joints of patients with rheumatoid arthritis respectively.  This genome was also found in 20% of patients with spondyloarthropathy and psoriatic arthritis and in 13% of patients with unclassified arthritis.
     
  • M. fermentans was not detected in any specimens from patients with reactive arthritis, chronic juvenile arthritis, osteoarthritis or gouty arthritis.

Minocycline in rheumatoid arthritis

In two recently-published independent randomized trials, rheumatoid arthritis patients were treated with 100 mg of oral minocycline twice daily or a placebo for a period of 26 weeks.  In the minocycline group, more minocycline-treated patients than placebo showed greater than 75% improvement in swollen joint count, tender joint count and in clinical parameters such as serum C-reactive protein (CRP) level and erythrocyte sedimentation rate (ESR).  In these studies, the intergroup differences were statistically significant for these findings and the mean changes over time revealed continual improvement in the minocycline-treated patients during the entire period of both studies.

This and other presently-available data on minocycline therapy in rheumatoid arthritis suggest that such treatment may be considered along with disease-modifying anti-rheumatic drugs such as methotrexate, sulfasalazine, gold salts and hydroxychloroquine.  However, additional clinical research is necessary to document the long-term efficacy of minocycline in the decreased progression of joint destruction.  We believe that such long-term study about the efficacy of minocycline should be conducted on patients who are positive for mycoplasma and chlamydia genome (since we detect the chlamydia trachomatis genome in blood and joint fluid of 20% of patients with rheumatoid arthritis) and not by random selection of arthritis patients.  Such selection or comparison between mycoplasma- and chlamydia-positive patients with mycoplasma- and chlamydia-negative individuals may further increase the clinical efficacy of minocycline or doxycycline in future double-blind placebo studies.

The eradication of the pathogenic mycoplasmas from blood and various tissue sites requires an intact functional immune system, which most patients with chronic illnesses do not possess.  Therefore, immune enhancement strategies along with prolonged drug therapy may help to eliminate mycoplasma from the human body.

Drs. Baseman and Tully, in Emerging Infectious Diseases, Volume3, January-March, 1997, concluded that "the available data and proposed hypotheses that correlate mycoplasmas with disease pathogenesis range from definitive, provocative and titillating to inconclusive, confusing and heretical.  Controversy seems to be a recurrent companion of mycoplasmas, yet good science and open-mindedness should overcome the legacy that has burdened them for decades.

If any of you want information on what im taking, just send me a message and i will pass along the info. I hope you are all doing ok :)


Diagnosed: Hypothyroid 1990, Endometriosis 1997, Agrophobia 1998, Objective Tinnitus 2004,Rhematoid Arthritus Feb 2006.
Procedures Done: Gallbladder Removed 1994, 3 Endoscopes, 5 Laps for Endo, Hysterectomy 2003, Angiogram 2003.
Medications now: Synthroid, Lexapro, MTX, Lortab.


Dev
New Member


Date Joined Dec 2006
Total Posts : 3
   Posted 2/24/2007 11:32 PM (GMT -7)   
Hi Morticia, and everyone else. As far as your "bathroom woes" you can find a raised toilet seat at most medical supply companies. Find a local medical supply and give them a call, they can set you up with hand rails too to help you get around the house without falling. Hope this helps.
Confirmed diagnosis of: Lupus, currently in remission,
RA, Narcolepsy, Hypothyroid, Gerd/Reflux,
Barrett's Esophagus, Asthma, Allergies,
Recurrent Rotator Cuff and Glenoid Labrum Tears
Migraines, Chronic Pain, Reynaud's
Current Meds: Enbrel, plaquinel, Nexium, AlleRx, Adderall, Synthroid, Lasix,
Singulair, Trazadone, Ambien
PRN Meds: Norco, Vistaril, Imitrex


sinlou
New Member


Date Joined Feb 2007
Total Posts : 4
   Posted 2/25/2007 2:28 PM (GMT -7)   
Hi I am new here. for years, they had me thinking i had fms, but things just did not add up so i went back to differnt doctors, they found i have ra. Ive had this for long time now, what I am finding hard about all this is not just pain in my legs and hands and arms. but my back, my throat,and my chest , my lungs. even my head.

I have small children and it gets pretty tough. Ive had sleep problems for over 8 years. i wonder if this is part of it.
all day long i have only little energy ,. Ive been dealing with this stuff on my own without meds for over 8 years,my father has this too. and it scares me because the meds he has taken over the years has done really nothing, his body is still in pain and broken down to nothing.

so i am concern what i should allow them to give me , any ideals. also i am concerned about the lungs and heart. the pain sometimes feels like i am having heart attacks which ive gone to check and nothing. but the pain remains. everyday.. very hard to breath. the hardest thing for me is knowing I wont be able to do alot anymore. its at that point now. it bothers me to be any one's burden...

well that felt good to get out ! thanks for listening.

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 2/26/2007 9:18 AM (GMT -7)   
:-)  hi sinlou,
 
it is a good feeling to "let it out" isn't it?  welcome to HealingWell!  i am so very glad you found this site...this is a fantastic community of folks who share a rainbow of autoimmune diseases & arthritis'.  you will find you will get a lot of support & information (personal experience) here...much of which is invaluable and so important in dealing with a chronic condition like your RA.
 
so are you taking ANY medications at all right now?
 
do you see a rheumatologist yet?
 
i'm 25 & have had RA for?????? confused ah hell who knows, LOL... tongue critics think since age 15 gone undiagnosed.  just started treatment for RA in 2002  so i can understand how you may be feeling in that you went a long while with this.
 
well...you might find that you may start treatment for your RA with NSAIDs, both OTC & perhaps RX by your doc.  along with that, depending on how severe your symptoms are (and to me it sounds like your having a tough time & not happy with the way your joints are behaving)...there are meds like Imuran, Methotrexate, 6MP which are pills that actually help the disease by slowing down destruction of joints & changing the immune system. 
 
it is VERY IMPORTANT to remember that NSAIDs even though they help joint pain...they do nothing to change the path of the disease which DOES effect more than just joints...RA can effect the whole body & it's organs (like the heart & lungs) they too can get inflammed.
 
Prednisone, a steroid...is very VERY helpful for really bad "flares" of joint pain...however, we all   devil HATE IT!!!  devil   but it is a lifesaver nonetheless. really helps swelling joints & throbbing joint pain. 
 
the new drugs for RA & other AI conditions (Humira, Enbrel, Remicade, Rituxin, etc...) are really the trick in getting control of this.  they are not as scarey as they may seem...some are small injections you give @ home {and should you go this route don't worry, we have SHOOTIN' UP PARTIES so we'll walk ya through!}
these meds alter your immune system & help stop cells from attacking your joints & connective tissues.
 
go to the website for the Arthritis Foundation...endless info on med & how to prep for your doc appt's. and even reading posts here you can get a good look at what's out there & what people are doing.
write back SOON!  take good care.
 
sincerely,
erin
Arthritis Forum Moderator
Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions 300mg Q3weeks; Intra-articular knee injections when needed; Mercaptopurine 50mgQD plus 75mg weekly; Mesalamine 4GramsQD; Prednisone 20mgQD mantainance; Entocort 9mgQD; Meclizine; Augmentin; Tigan 300mg; Reglan; LidoDerm Patches; Diazepam 5mg for AS back spasms; Restaril; Dilaudid 4mg tabs for pain. 


sinlou
New Member


Date Joined Feb 2007
Total Posts : 4
   Posted 3/1/2007 10:45 PM (GMT -7)   
Hello! I am back, thanks for your responce.. just to warn you guys i cant spell for nothing! anyways I am suppose to go to ra dootor this month. and md doctor again friday.
I have not taken any meds at all, the only thing I am asking for friday is sleep aid. i cant sleep at all.

What I find strange is when i was only three years old my legs were hurting, mom and dad would just chalk it as growing pains. but they spent many nights listening to me cry.
strange thing is sometimes when i would try to get out of bed to go bathroom,my legs were numb and i would fall to the floor.

this happend alot,then it was like it disapeard , then about nine years ago things started up again. but i would just shake it off.
today i have no energy... this i find hard, trying to keep up with the house and three little ones ,after dinner is done if i make it to then. i am just worn out, but cant sleep.

well hopefully soon maybe they can help me get some energy .. i need this badly, i have a four year old and six year old and seven year old to tend to. its hard..

i pray for a break threw.... my mom and dad have to deal with this too. father has ra mom severe ostr..

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 3/2/2007 12:27 AM (GMT -7)   
hi sinlou,
glad to hear back from you.
wow, you're a good parent.  i applaud your efforts.  every parent here knows just how "more difficult" it is to do the regular every day things everyone takes for granted.
 
just a random thought...you never had or was exposed to polio were you?
 
ugh...the no sleeping thing is hell.  it's almost 2:30am & i'm still awake too with my darn knees.
 
good luck with the sleep aid.
i'm trying Rozerem now (obviously unsuccessful, LOL).  also took Ambien CR, and Restaril in the past. {these all were pretty decent in my opinion, never had any problem with feeling hungover or anything} however, nothing "put me to sleep"...then again, i'm wired on steroids.
Lunesta gave me WICKED heart burn in the middle of the night.
 
getting some good sleep would sure help you cope better with the day & joint pain.
 
i'm glad to hear that you'll be seeing some docs soon to get the ball rolling.
the best to you!
Arthritis Forum Moderator
Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions 300mg Q3weeks; Intra-articular knee injections when needed; Mercaptopurine 50mgQD plus 75mg weekly; Mesalamine 4GramsQD; Prednisone 10mgQD mantainance; Entocort 9mgQD; Meclizine; Augmentin; Tigan 300mg; Reglan; LidoDerm Patches; Diazepam 5mg for AS back spasms; Rozerem 8mg; Dilaudid 4mg tabs for pain. 

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