OK, before I get FLAMED for this, I will state that I, like so many sufferers here have/had hall the symptoms of MS, Lupus, CFS, etc. I was "pidgeonholed" and told that I had MS and my dr wanted me to start on MS medications that were only symptom relievers. As I researched more and more, I discovered that there has been a EXPONENTIAL EXPLOSION of autoimmune diseases that really took off after the early 90's. Doctors have no explanation for it. Why? I asked.
After doing extensive research I started to notice that Gulf War Illness and MS, Lupus, CFS, Fibromyalgia and many AI diseases are exactly alike with overlapping symptoms. I started interviewing soldiers and spouses that were perfectly fine before entering the service, but now soldier and spouse alike are ill, with their children ill as well. Symptoms range from head to toe ie: Chronic headaches, eye pain, ringing in ears, stiff neck, sore throat, swollen Lymph nodes, joint pain, muscle stiffness, fatigue, shooting or throbbing pain anywhere, sore knees, ankles, bowell issues, heart pallipatations/pain, stomach issues, Women usually have ovarian/uterine issues. Brain plaques, spinal fissures and a general unwellness feeling. (Am I forgetting anything?)
The possibility of this being an chronic intracellular bacterial infection is extremely possible considering that it has been proven there were bacterial agents causing illnesses. Many Gulf War soldiers and their families have Myco and Mico plasmal infections; bacterial and fungal infections that are systemic. Lymes sufferers not only have these mycoplasmas but also coinfections that are exactly alike MS, Lupus, Fibro, ALS. Once these bacteria enter the bloodstream, they go wherever your blood goes (everywhere-affecting all organs and tissues, including brain)
Since everyones immune system is different, would it not be conceiveable that symptoms might vary from patient to patient? Would it also not be conceivable that a dr would rush you in and out and give you a quick diag so he could see the next patient? If your Dr ordered a Labcorp/Quest test for lyme disease, did he tell you that the tests are virtually 90% unreliable? Those tests were designed to look for ONE type of Borrelia bacteria(there are over 200) and ONE type of form this bacteria exists in. Borrelia exist in 3 different forms. They are pleomorphic-shape shifters. Mycoplasmal, spirochetal, and cystic forms. Look at it this way. I will use an car analagy. the test looks for a Honda element, but it sees a Accord, or a Civic or a Element depending on when the blood test is taken. And if you are taking any meds at the time of the test, it will be neg. make sense? Since this infection weakens your immune function, your immune system will never (rarely) show antibodies to it. The infection is hidden INSIDE your cells. This bacteria is truly bizzare but has been proven to exist in all forms.
Youtube a video of Dr Lida Mattman and her work w/ Lymes bacteria and "stealth pathogens" She was Harvard trained, PHD, Nobel Prize Nominee in Immunology/Virology and taught for over 35 years. researchers too cadaver brain samples from Yale and sequenced them for Lyme Borrelia Burgdorferri bacteria. The cadavers belonged to ALS, Lupus, MS, Sjorgens, hashimotos, etc diaged patients. 75% of the brains tested pos for the Lyme bacteria.
I have more info. Please ask any questions, but keep the flames to a min. Thnx
BTW, there are 3 labs that use the Q-RiBB test which uses DNA sequencing (strings of DNA for the diff types) and blood smear. Research Bowen Q RIBB test and Lymes. IGENEX labs is used by the ILADS doctors (International Lymes and Associated Disease Society) These are doctors that believe from research that these are chronic bacterial infections.
I want you all to think about this very seriously. Why have the drug researchers stopped looking for cures and only concentrate on pain meds. A cure drug is one time deal, a chronic illness means you have to take 8 pills a day for the rest of your life. What is more proffitable for them? I had a friend from college that was a Pharma rep. She retired at 38.
before accepting your fate, do some research. I did, and I am getting better. It might take 6-12 months, but it's better than living the next 40 years in pain and progressively get worse.
Why would you get flamed? For stating your research,your interpts of that search? Absolutely not.
Many of us are researchers by profession, many of us are medics by profession, many of us are loaded with credentials and experience. We're all adults here.
Can viral or bacteria infection be the foundation of an autoimmune disorder? ABSOLUTELY. Can it make you vunerable to MS in particular, absolutely. Does it happen as a general rule for everyone, no.
I'm super sorry you were pigeonholed. No one deserves that. I'm sorry you are suffering, though very glad you are learning all you can. Hope that involves some valid sources.
I know that my DMD is working on my disease and I'm grateful. I also know that I take meds for some other chronics in my life and I'm grateful. MS in incurable at this point, but it won't be forever. I believe there will be more combo of solutions for us.
In my case and many others here - at this point, doesn't really matter if our past life made us vulnerable, just have to deal with the here and now and go from here. It's the only way we can get through the next day, or hour, or week. Know what I mean? Those living with chronic ailment will surely know what I'm saying - the other option is to say, give.
If you breeze through our forum you may not realize that most of us are fighters - and only have moments of weakness and that's when we rely on each other to pull us through. Hope you look a little further, and uncover that - it should be inspiring.
This isn't a flaming type of forum here - as shell pointed out we are a civilized group that is open to new ideas when they can be backed with real science.
I won't pretend to understand all the science behind what you are purporting here. I can tell you I was raised in a large family, all in the same environment and I am the only one with MS. I did not serve in the Gulf War, my spouse was never in the service, and my tests for MS are positive and my Lyme tests are negative. I do live about 10 miles from a very large AF installation if that counts. Yes, my neuro ran all the tests - my blood was shipped out all over the country to various labs.
I am very sorry you were misdiagnosed, if that was the case. We do hear once in a while that people have a dx rescinded because of new clinical evidence.
Symptom management with MS is not enough - the neurologist should have placed you on a disease modifying therapy if the dx was conclusive. You are not specific on how the dx was reversed - did it happen through the neurologist or did you decide this on your own ?
I have no doubt that Lyme Disease is very real and wrecks many a life here in the US and abroad. Recognition of it is still growing, and I am hopeful everyone gets the appropriate treatment.
Whatever disease you have, may you also be successful in the struggle to feel better.
if the labs your doc used did not use the Q-Ribb method, your results could well be incorrect. Does your husband have any symptoms? aches pains, headaches, etc. The sources that I have are as about as reliable as you can get. My source has over 3 world renowned citation papers written, 400 peer reviewed and accepted papers and is on several boards and faculty. He discovered the military weaponised Mycoplasma and it is one of the reasons we are experiencing a HUGE growth of AI diseases. Unprecedented. If you look at these chronic bacterial infections, they have many vectors of transmission. This normal bacteria that is commonly found has been found in a modified form in a huge group of tested populace via of a single added genetic sequence that does not occur naturally. Gulf War soldiers and AI sufferers have this bacteria. Mycoplasma Fermentans Incognitus. It's the common link in ALS, GWI, MS, Systemic Lupus, Lymes.
The reason I ask about your area around the base is that the AF uses aerosol spray technology in some of their planes. There were 2 "misshaps" in Arkansa where 100.000 fish died in the Ark river. Also over 5000 birds mysteriously dropped from the sky a week later. Those are Facts.
Lulu, also tell me if the area around the base has experienced an "abnormal" amount of AI diseases. Maybe your friends are experiencing them and have confided.
This Autoimmune disease explosion is not normal. Here in my town it is getting worse and Lymes is up 37% as reported by the state.
One other thing. In my research, I saw a editorial in my paper of a woman who met a Military policeman (never overseas) who had just had a Giloblastoma removed. Brain cancer. They dated with his best friend (also an MP, never overseas, in fact they went through training together) and his girlfriend. Both couples got married. Had children. Both soldiers died from innoperable giloblastomas that returned. BOTH OF THEM.
Odds are infintesmal of that happening. Now, both women are ill with GWI like illness and have been diaged w/ MS. Both had total hysterectomies. Both families children suffer cognative issues. Odds of THAT happening are astronomical x 10. Only linking item was both soldiers were innoculated together with experimental smallpox and Anthrax vaccines w/ Squaline as an adjuvent.
Could the vaccines have infectious bacteria in them? I see those odds and see an intracellular chronic bacterial infection.
Something dosen't add up. Something is very wrong.
Another thing, the MS society quotes a NIH study done 11 yrs ago to say that Lymes and MS are not synonymous. 11 yrs. There has been much research from the Human Genome project since then and all is said is that it MIGHT be bacterial? I am just offering a divergent opinion that fellow suffers might want to consider since all my doctors were wrong until this scientist told me "No normal Dr, Specialist, or Infectious Disease dr will be able to figure this out and you will get passed around because of a bacterial/fungal infection that they have never seen before." He was right. it took me 14 months to figure that out, 14 precious months.
Have you visited the Lyme forum? Though many of us have been tested, we still have many in limbo and lyme being a mimic of MS and other disorders is no secret. We talk about the importance of testing a lot. I remember the time when the kids were in wards at the hospital with Lyme - looked like cancer wards. This was before the great strides and success in treatment.
I assure you - anyone facing MS on our forum knows about Lyme and we do not discredit the disease nor the havoc.
where was your lyme test done? through who? IGENEX, Great Smokie Labs? if done anywhere else, it could be wrong. And that is definative. You get tested for Mycoplasma Fermentans Incognitus?
Can you pinpoint a date when your life was changed forever by this illness?
RA has been proven to be a bacterial Myco infection. IBS/Chrone's (a symptom of MS/Lymes) is by Heliobacter Pylori bacteria. Yes , I have visited the Lyme forum, and the autoimmune, and several others. A number of people have contacted me about this.
You state you all know about Lyme. Great. Then you should know how unreliable the Labcorp/Quest tests are. They are about as poor as Clev Clinic and Mayo. They use the same diagnostic criteria that the CDC and ISDA says to use.So consequently they miss 90% of the actual POS results.
Shell, did you know Tysabri and other human antagonistic monoclonal antibody drugs were developed by companies under the direction of the Department of Defense. Now WHY would the DoD want to have a drug made? They are stockpiling these drugs and Inhalation Anthrax drugs under something called Project Biosheild 1.
Soldiers are being used as test bed subjects for these medications without their consent. I met a woman who was AI ill as was her Husband (a soldier). She had all the classic symptoms, even a hysterectomy. She was diaged previously with Systemic Lupus, but "Now dosent have it" huh? An Army doctor gave her Benylysta, (belumamubab) which was a drug that was developed under contract for the DoD and did not have FDA approval. I think that is odd. If you look at the manufacturers web site, it lists "extensive human trials". Are you allowed to have human trials before FDA approval?
Shell, I am NO scolding you. There are some that get their diag with out any concrete proof of their illness, with varrying titres and accept their fate. Meanwhile, the brain plaques increase, the spinal/muskuloskeletal issues get worse, cancers and other worsening symptoms emerge. If I knew that a teset I took was seriously flawed (as is the Labcorp/Quest/Mayo/Cleveland criteria), I would look in a different avenue. For antibiotics=getting better. Pain modulating drugs for rest of life=get worse. Tysarbi=rest of your life. DNA disrupting antibiotics=6 months to a year. I have 40 years left on me. I'll take the accurate test and get better.
I'm not disgracing your opinion, I just handed you a winning lottery ticket. All you have to do is see if the numbers match up and WIN.
Right...conspiracy theory. maybe the jokes on you.
Life" (11/95) featured a special report entitled: "The Tiny Victims of Desert Storm", which described in heart-rending detail (with numerous photos) how the children of our veterans are being born with horrendous disfiguring birth defects. The article was subtitled, "When our soldiers risked their lives in the Gulf, they never imagined that their children might suffer the consequences - - or that their country would turn its back on them."
In the months and years following Desert Storm, thousands of babies have been born to vets with horrible deformities (missing limbs, one eye, missing ears, incomplete or missing organs - reminiscent of the Thalidomide babies of the 1950s - but in far greater numbers. [ED. NOTE: Thalidomide was another experimental drug (administered to pregnant mothers) which went awry].
Meanwhile, the Department of Defense is working overtime to cover up the crisis with Gulf War babies, denying it exists, denying benefits or medical assistance to veterans with birth defected children, and even going so far as to censor the "Life" article cited above off of the Internet.
Dr. Douglass, a close friend of this writer, wrote in his January 1994 newsletter regarding Gulf War Illness: "The symptoms are now having serious repercussions. Half or more of the babies born to Gulf War vets since the war have had some sort of birth defect or blood disorder".
"Nation Magazine" (1/95) estimates that 67% of babies being born to Gulf War vets who are ill are having serious birth problems. Over half of the babies now being born in Iraq today have deformities or major birth defects, according to reports Dr. Garth and Nancy Nicolson have received.
According to the "Life Magazine" article: In 1975, a landmark Swedish study concluded that low-level exposure to nerve and mustard gases could cause both chronic illness and birth defects. The Pentagon denies the presence of such chemicals during the Gulf War. [ED. NOTE: Even though over 18,000 chemical alarms sounded during the Gulf War]' but the Czech and British governments say their troops detected both kinds of gas during the war. A 1994 report by the General Accounting Office says that: American soldiers were exposed to 21 potential reproductive toxicants, any of which might have harmed them or their future children.
A number of examples of babies born to Gulf War vets with devastating birth defects were cited in the "Life Magazine" article:
1) Kennedi Clark (Age 4) - Born to Darrell (an Army paratrooper in the Gulf War) and Shona Clark. Kennedi's face is grotesquely swollen sprinkled with red, knotted lumps. She was born without a thyroid. If not for daily hormone treatments, she would die. What disfigures her features, however, is another congenital condition: hemangiomas, benign tumors made of tangled red blood vessels. Since she was a few weeks old, they have been popping up all over - on her eyelids, lips, etc.
(2) Lea Arnold (Age 4) - Born to Richard and Lisa Arnold. Richard was a civilian helicopter mechanic (working for Lockheed) with the Army's 1st Cavalry Division during the Gulf War. Lea was born with spina bifida, a split in the backbone that causes paralysis and hydrocephalus (i.e. water on the brain). She needed surgery to remove three vertebrae. Today, she cannot move her legs or roll over. A shunt drains the fluid from her skull. Her upper body is so weak that she cannot push herself in a wheelchair on carpeting. To strengthen her bones, she spends hours in a contraption that holds her upright. Just about our whole world is centered around Lea, says Lisa Arnold. Huge medical bills and the unwillingness of insurance companies to cover pre-existing conditions force the family to live in poverty in order to qualify for Medicaid.
(3) Casey Minns (Age 3) - Born to Army Sgt. Brad and Marilyn Minns. Casey was born with Goldenhar Syndrome, characterized by a lopsided head and spine. His left ear is missing, his digestive tract (i.e. esophagus) was disconnected. Trying to repair his damaged organs, surgeons at Walter Reed Army Medical Center damaged his vocal chords and colon, says Brad and Marilyn. His parents feed and remove his wastes through holes in his belly. His mother Marilyn, says, "Sometimes it just overwhelms me, but I try to take it one day at a time.. it's made worse by people who say that Gulf War Syndrome doesn't exist...they're turning their backs on us."
(4) Michael Ayers (Died at 5 Months of Age) - Born to Glenn (a battery commander in the Gulf War) and Melanie Ayers. Michael was born with a mitral-valve defect in his heart. He sweat constantly - until the night he woke up screaming, his arms and legs ice-cold. he died that night of congestive heart failure. As "Life Magazine" wrote: After Michael's death, Melanie sealed off his bedroom; she tried to close herself off as well. But soon she began to encounter 'a shocking number' of other parents whose post-Gulf War children had been born with abnormalities. All of them were desperate to know what had gone wrong and whether they would ever again be able to bear healthy babies. With Kim Sullivan, an artillery captain's wife whose infant son, Matthew, had died of a rare liver cancer, Melanie founded an informal network of fellow sufferers. Kim is here. So is Connie Hanson, wife of an Army sergeant - her son, Jayce, was born with multiple deformities. Army Sgt. John Mabus has brought along his babies - Zachary and Andrew - who suffer from an incomplete fusion of the skull. The people in this room have turned to one another because they can no longer rely upon the military."
(5) Cedrick Miller (Age 4) - Born to Steve (a former Army medic in the Gulf War) and Bianca Miller. Cedrick was born with his trachea and esophagus fused; despite surgery, his inability to hold down solid food has kept his weight to 20 pounds. His internal problems include hydrocephalus and a heart in the wrong place. Cedrick suffers, like Casey Minns, from Goldenhars Syndrome. The left half of his face is shrunken, with a missing ear and blind eye.
(6) Jayce Hanson (Age 4) - Born to Paul (a Gulf War vet) and Connie Hanson. Jayce was born with hands and feet attached to twisted stumps. He also had a hole in his heart, a hemophilia-like blood condition, and underdeveloped ear canals ..a cherubic, rambunctious blond, he's the unofficial poster boy of the Gulf War babies - seen by millions in "People Magazine". But since his last major public appearance, he has undergone a change. His lower legs are missing. Doctors recently amputated his legs at the knees to make it easier to fit him with prosthetics. He'll say once in a while, "My feet are gone", says his mother Connie, but he has been a real trooper.
The government (especially the Defense Department) denies that the problem exists and no government medical or financial assistance is forthcoming unless a parent is still in the military (and over 2/3 of the Gulf War vets have been separated from duty since Operation Desert Storm).
As "Life" wrote: For parents of these children, the going is grim. They are denied insurance coverage for pre-existing conditions. They are being driven into poverty. Some join the welfare line so Medicaid will help with the impossible burden. You could be a millionaire, and there is no way you could take care of one of these children, says Lisa Arnold.
Right the DoD is GREAT! Glad you support them , I'LL support the TROOPS.
I guess you look at the Tuskeegee Experiment as a conspiracy theory too, huh? Thats where the Govt in the 30's-40's opened up free clinics to blacks and infected them with Syphillis (syphilis). never treated them, just observed their decline. Why would they do that?
The Lyme bacteria is a spirochete, just like Syphillis (syphilis) but more pathonogenic. Why was Lyme disease "discovered" across from a class 4-5 bioweapons facility in NY? Why were mosquitoes genetically altered to carry certain diseases more efficiently? If you think this is not a possiblility and that the explosion of AI diseases might not be related, then I hope you are happy in your diag.
. And did you know the pres (any president) has the authority to do biological testing on the masses without their knowlege? Just as an afterthought.....Watergate was denied too, it just took a little digging about things that didn't make sense.
A little word of advice, if your concerned about being 'flamed' for having a controversial veiw and the welcome you receive is both warm and encouraging, its not a good idea to be close minded and condesending to others that share a different view. You risk not getting your message across and alienating those that might otherwise be interested in what you have to say simply because you are still on the defensive expecting to be 'flamed'.
I think you are probably in the approximate 10% stats of missdiagnosis, that doesn't mean that the other 90% dx with MS are misdiagnosed. Doctors screw up the dx of just about anything, it happens (lol dont i know it) but today its a lot more difficult getting dx with MS even when the diaognostic evidence is there. So with that thought in mind, did you get a dx of MS based on the MS criteria? What was the dx based on and why did you question it and get tested for lyme after dx?
Personally the chance of me having Lyme is so slim its hardly worth thinking about, none of what you say is relivant to 'everyone' and that should be something kept in mind in further discussions. I welcome the discussion but I'll quickly loose interest if i'm being preached at and not able to ask questions that for me aid my understanding of the topic.
So how does Lyme mimic MS in the clinical evidence? Is it the same or for example does Lyme have the MS type sx but not the clinical evidence?
I was going to post a very warm post to you!!! But as I got down the page reading! I agree With Sumanadevii... I Don't feel you will respond anyway positively to me unless it was exactly which way you wanted!!! You remind me of my father he is a huge conspiracy therorist
and a holistic medic as well, a combination to keep well away from. But in the 90's my Mom was misdiagnosed with MS and she had Lymes and she is well now!!!
Thank you Ewfordo for your great knowledge and the countless hours of research to determine the misdiagnosis of MS due to the inability of doctors to send off the specimen for Lyme titers to a certain laboratory.
Great post and sounds like you did your research! I think theres a lot of environmental things that have caused an "outbreak" of autoimmune disorders but i think the main one is all the fake sugars that are out especially aspartame...stuff thats in diet sodas/gum/foods/etc. look up aspartame poisening and it sounds a lot like MS
My husband has been hunting in tick infested woods in the up since he was a child and is healthy. While I on the other hand have never enjoyed the outdoors and have ms. They did run a lymes test and I remember joking with the dr that I would actually have to go outside in order to get lymes disease. My mother has lupus and her sister, my aunt , has ms. In fact on my mom's side of the family there is a lot of auto immune issues, especially the women. The one thing we all have in commom is that we're related. We all live in different states and there's no military connection.
I would be more than willing to request another lymes test and mention what you have said but I don't think I would ever be comfortable giving up my copaxon if it did come back as lymes disease.
Sorry. Just rered my post and my daughter is right, I don't come across as warm and fuzzy.
Thanks for the information. I can say that one thing I have learned from being dx with a chronic illness is to keep a positive attitude. Most days are better than others and I take it one day at a time.
If you read my posting, it states that the current Labcorp test and the criteria were set up purely as a monitoring in the form found at Old Lyme Conneticutt. it looks for only ONE type of Borrellia, there are over 200 in the US, also it looks for the antibodies to the spirochetal form only, not the cystic, or the mycoplasmal state. THAT is the crux of the whole discussion. The test is flawed and the doctors keep ordering it because they don't know any better. ANY doctor who treats Lyme on a reg basis knows the tests are unreliable, but your hometown doc dosent know that probably. Mine didn't. Go ahead and laugh at me, it's your choice. I'm just here to offer a plausable and very real possibility of some if not many being missdiagnosed with an AI due to some doctors arrogance and ignorance.
And yes, you Lyme titres will be negligible with a test that is looking for the wrong bacteria.
I have several ms symptons, and my very young daughter does too.
All mri's have been neg and L.P. was neg.
So I found adr in australia who says lyme is here, and got tested with the cd57 and it come back at 39 indicating chronic lyme, so I then got tested at igenex overseas, and today my dr said yes they are also postivie, but I will speak to him in the morning for more details and numbers etc.
Can I rely on these to tests saying that I'm postitive for lyme, or should I still be suspecting ms???????????????
All of these posts have really confused me
I was diagnosed with MS at the age of 23. I had a lumbar puncture which said I was negative for lymes disease, but had blood work that came back positive. My MS doctor said I had chronic lymes so I went to a infectious disease doctor who did a western blot test which he said was inconclusive. I had a tick bite 4 years prior to all this and never had the "bullseye" but had a red swollen mark that would itch, and was bothersome for 2 years. I was in Florida at the time and nobody seemed to know what to do for me or really understood lymes. I ended up pregnant shortly after and put things on hold, but she is now 8 weeks old and I am in Illinois now, and trying to look into where to go from here. I would appreciate any words of wisdom.
The Western Blot PCR for Lymes looks for the DNA sequence of ONE PARTICULAR TYPE ( caps for emphasis) of Borrelia, not any of the other known species. It might say inconclusive, I would get further tests done to confirm Borellia, and coinfections which increase the morbidity. You really also should look into viewing the documentary "Under Our Skin" as it will open your eyes to all the possible manifestations and missdiagnosis going on since doctors don't have relaible tests. And THEY can NEVER be wrong, right? Why base your decision on someone who only looks at you as "the next patient", not "how can I get this person well" My son's Pediatrician said he needed a nebulizer for a dry cough and illness, come to find out he had strep. Back to the doctor, more money, and this is a very well respected Pediatrician in town.
Check out www. IMMED. org and look for autoimmune illnesses and chronic bacterial intracellular infections. Dr Garth Nicolson is an expert DR here on Medhelp, and he was the Cheif scientist at the Anderson Cancer Research Facility at Ft Mead. He had been studying Mycoplasmas and their effect on chronic illnesses. I am only here to offer suggestions as accepting ones fate when the current evidence seems to point the bacterial/fungal infections causing chronic illnesses.
Yes, the Igenex tests use the Q-Ribb Bowen method. it is THE most accurate test. So accurate, that the goverment says the tests must be rigged. They have submitted double blind samples to check for accuracy. The Bowen Q -Ribb test has passed every time.
My neuro is an MS specialist in Boston, MA... did Lyme tests on spinal fluid and blood draw... my rheumatologist specializes in Lyme disease... all lab test go to specialized lab... I live in an area of MA that Lyme runs rampid... My primary only does western blots for Lyme and sends to speciality lab in CA Hummmm guess their diagnosis of neg Lyme is accurate! I have been tested for lyme more times than I can count. My MRI shows lesions... my spinal tap shows bands... my memory, processing speed, and word finding are severly diminished... I am positive for Hashimoto's Disease, Fibromyalgia, Osteoarthritis, & PPMS all confirmed by either lab tests or specialists in that field, hummmm I think I have autoimmune issues. I have family history of severe RA (mom), graves disease (sister), hypothyroidism (sister and mom) and severe osteoarthritis (mom). So... I believe my diagnosis and cope with it daily despite your research... Once you learn to accept and cope you begin to live again and that's what's important to me :)
~live as if all your dreams came true~
ps... I have PPMS, no meds, so no one is getting rich off me, just saying!
Oh and if I forgot to mention... I worked in the medical field for years before having to retired due to cognative issues! I did my research, we all do, it's a coping factor in the beginning of how do I deal with and accept what is happening. I think the difference here is most of us kept our research tantrums to ourselves, we've all been. Good luck in your quest!
As I said previously, you can have many autoimmune disease... Lyme should have been treated with doxycillian (unless allergic) for a min. of 30 days... as I said I live in an area of high lyme disease and I worked in the medical field so I use to call in meds often. I hope you've found a good primary care physcian that will refer you out to the necessary Dr's... I could give you a list of great dr's in my area but I'm not familar with your area... word of mouth is usually a good place to start and interview your dr's ask for a "get to know you appt" before you decide on a dr... Good Luck and if I can help shoot me a message!
~live as if all your dreams came true~
I have met several people that had pos Lymes, bullseye rash, got the 30 day ABX, and were told they are cured. Now now these women have RA, AI issues, Hysterectomies, lesions, cancers,etc. The CDC approved 28 day regime is not enough to clear this infection. That is a sticking point between the CDC and doctors such as Burrascano and Jemseck that are ACTUALLY treating this disease.
Fortywhat, now you are being snide. I am not. Did you get tested for coinfections, or just Lymes? Bartonella, Babesia, Erlichia, Rickettsetia can also be transmitted.
As far as family history, look at the information being discussed about bacterial infections being passed placentally or through mothers milk as per Dr Lida Mattman (YALE PHD, Nobel Prize nominee, immunology/Virology professor for 35 yrs)
I had written a long "defending myself" message and thought, hummm nope not going there! I, like Shell am an adult and don't appreciate the way you feel you can question my diagnosis... And just for the record in no way have I been "snide". I hope you find the answers you are looking for so that you can accept and move forward.
I do not doubt there is some validity in your research and statements. I think you have served your purpose in educating people to question the tests that are done in ruling out Lymes and the possibility of the Bowen Q-Ribb test in conjunction with the Western Blot. I am sure the ID or Doctor would not poo-poo the idea of any patient bringing this to their attention.
In fact, perhaps people would feel better if they knew there were several tests that can eliminate the possibility of Lymes.
The feeling I get from ewford posts is a disappointment. Like she/he is one that the dx was taken from and now wants it taken from everyone. I guess having lymes isn't a big enough disease to brag to friends about...
To Ewford, MS is a horrid awful nasty disease. Be glad you don't have it and move on. Enjoy the freedom.
No ma'am, missdiagnosis are happening more frequently with the rise of the Atypical.........AI disease. This was the reason for the posts. I apologize if I came across as rude, it just seemed/seems that are so many looking for answers when their tests were borderline, a little positive but got an atypical diagnosis. Once again I'm sorry if I ruffled anyones feathers, this was only meant to look at new possibilities/explanations when tests were ambiguous or MS'ers that are experiencing symptoms that might not fit the criteria. Olive branch extended.
I liked the optimism of your post although maybe a little too much information at once! lol. I have been going through the dx process of MS for about 5 years. They're finally seeming to know that it is MS but are still wanting more tests to be sure.
On the other hand, I've been dealing with my 2 year old daughter who I brought to her doctor with a lump on the back of her head were it meets her neck. Her doctor stated that it was a sebaceous cyst and removing it at her age seemed a bit too much since they're more bothersome than harmful.
A couple days later, she formed another lump on her skull just above where the 1st one was. I took her to the ER since her doctor's office was too busy to return my calls and an appointment is made a month out. The ER doctor said she had lymphitis. Although, the ER doctors here are quick to dx and not even look, as this doctor did. He said he didn't need to look at it, he knew what it was.
My daughter has a slight allergy to bug bites, mainly mosquitos and gnats. Which is hard to deal with since we live in florida near water and the flying insects are unfortunately sometimes unbareable! The doctor stated that she was just having her "usual" reaction. Her reactions to bug bites consists of bumps that look like bug bites. She'll get one bite and it'll look like she has 10. So, during the summer months she cant stand to be outside without a ton of insect repellent. (Most of which are not good for you!)
Every time we go to my mother in law's house, it seems the ticks are attracted to her. She'll come home with several on her. These ticks are very hard to detect and remove completely. They have a sort of numbing solution that they secret when they bite so you usually don't even know that it's on you until you see it, and by that time it has burried it's head in you. I know that she has had several that we didn't notice for days.
I bathe and look her over EVERY time we go to her house and sometimes I miss some. She had one that had bitten her head about 3 days before I noticed the lump on her head. They put her on an antibiotic for "cat scratch fever" even though we are rarely around cats since my husband has an allergy to them.
Even though I'm not a firm believer in giving antibiotics without a firm reason for taking it, I gave it to her and there was no change. She went in for an ultrasound of her head and they determined it was not cancerous. There was a blood test that showed no infection, however her blood was discarded and not tested for anything other than an infection in her bloodstream. I thought testing for low white blood cell counts and all of that was routine, I guess not at this hospital...
I brought to her doctor's attention that she has been bitten many times by ticks that are known to carry lyme disease but she keeps overlooking that. She gave her another antibiotic and after a few days of using it she continued to have nosebleeds. I took her off of it and the nosebleeds stopped.
She had one day where she seemed to be unaware of what was going on around her. She would just fall out of a chair, be standing and fall backwards, not respond when you say something and then think you're weird for questioning her. She often complains of headaches (which I've had a history of since I was a child). She also has been complaining that her eyes burn like there's a fire.
Geeze, I'm sorry to have written so much but this brought a lot of questions to my head.
She's only 2 so it's hard to completely understand what she feels. She talks but doesn't know fully how to explain things. Her doctor seems to think that this is something we don't need to worry about. Can neurological issues be hereditary? How do I determine if she has developed Lyme disease? She's never had the "bull's eye" rash. But to my understanding most people don't get that the 1st time they're bit and many don't get one at all. It's been 3 months and the lumps are still there. For about a week she would get one every day it seemed. I believe we are up to 5 lumps on her head and have gotten bigger since they came up but have not changed within the past month...
I'll end this here and give you time for a response. lol. Sorry it's so long but I have a lot of concern that the doctor's don't seem to be worried about. Thanks for sharing and reading.
I know it's been awhile since your last post, but I thought'd I'd respond regarding your little girl. I have tick borne diseases and I would strongly encourage you to take her to a tick borne disease specialist, which might be an LLMD.
Realistic estimates put the occurrence of the bull's eye rash for Lyme at about 50% so absence of the rash by no means excludes Lyme. She could easily have a tick or other vector borne disease and you don't want her to go untreated for fear of permanent damage. (Note: Cat Scratch disease/Bartonella is also transmitted by fleas & lice, and probably also by ticks.)
Columbia University has a good overview of tick borne diseases. You can check them out at http://columbia-lyme.org/patients/tick_borne.html
Western blot is for protein, not DNA. Some proteins that come from different DNA sequences can be similar enough sequence-wise or structurally that they can be recognized by an antibody made to just one of them.
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