OK this is touch so much to list but thanks for taking the time to read.
3 yrs ago dxd with lyme have treated 3 yrs-found meningioma incidental finding on mri-radiation 2006 was pregnant did not know and neither did dr's tested negative! God had a great plan for my son or a great sense of humor as my oldest is 20! . Have shown EBV for 3 yrs in high # due to late diagnosis and lymes sneaky ways seems may now have ms. lumbar puncture showed EBV 1195 in spinal fluid and mycoplasma. All wbc too low to differentiate. I am suffering symptoms of lyme and ms but was told by one of the many docs strange to find EBV in spinal fluid. I had an overactive immune system for years swollen glands and would never get sick jut would go away-infact- my whole life. My father had this issue before when he was alive and I have a 15 yr old sister that has the same isues.
When I became ill in 2006 all that changed and I no longer get that and I can wear any jewelry I like where I could not even wear 24 carat gold as I would have a reaction. My immune system completely changed.
I understand we show titers for life with EBV but mine has been this high for the whole time without the regular mono symptoms other than the fatigue/flu. has anyone else found this in their spinal fluid? I read a little about how it can cause ensephalitis of the meninges and also form tumors? Wondering if prior to my visit to UVA a visit to yet another Dr infectious disease might be in order. My neurologist did not seem worried by the results but the neuro opthamologist more so..........as always confused.
2 of the EBV tests on fluid showed high...
I am still so sick was great during pregnancy after the baby the pie hit the fan and I have taken a dive into the pitts. Can barely walk some days and lifting the baby well lets say good thing he can walk a few mins is all I can manage :(
You state that you have lyme and EBV? Is this correct? If so, what makes you think that you have MS since lyme and MS have so many of the same symptoms? Did you test positive for lyme? Also, have you had MRIs or something else to confirm MS? I know these are a lot of questions, but I am really trying to understand your question.
I have extremely high EBV # s and have had strange neurological symptoms since July of 08. I have had mris, lumbar puncture, etc. I never had EBV show up in my spinal fluid and neither have I ever heard of it. I just tested low on a CD57 test (lyme disease) and I am waiting on test results to come back from Igenix(very reputable lab). My EBV #s were in the 2 and 3 thousand range and I am aware of the connection between this and MS. However, there is a connection between lyme and EBV.
There are tons of neurological and eye sight issues that can go hand and hand with lyme versus MS. Have you been adequately treated for lyme? If not, lyme can cause all of the problems that you state and even more. You may want to go to the lyme boards because there are many of us going through exactly what you are going through.
I do check out Lyme boards frequently. Right now I have been trying to establish if have lyme mimicking ms or ms plus lyme. Either way things not rockin' for me right now!
Understand I am huge lyme advocate and active in the lyme community despite my health issues and will continue to be. It is an appalling what is happening to the lyme community and it is getting worse with the obvious division within our own communities. If IDSA keeps the panel with the regulations it has imposed regardng the member requirements we do not stand a chance. There will be no lyme literate physicians to bring balance to the panel. This has to change before the treatment protocol is revisited and revised. I am a supporter of a number of organizations and what I am seeing between the lyme orgs is suicide.If unity is not met between the major orgs. then I have to say we will not stand a chance to stand against those debating chronic Lyme diagnosis...sorry just read some things here and there and I am having a hard time understanding why the communications between the groups is so broken down. Representing the lyme community is a huge responsibility far to great for one or two orgs to undertake without recognizing and communicating with the others. People need to remember if they are leading they need to look over thier shoulder to see if anyone is following or you are just taking a long walk. again sorry had to air my views! Nothing to do with you personally! feel free to paste it in the lyme community ! that is where it belongs.
I have come to this board with the understanding there is a great overlap in EBV, autoimmune diseases including CFS and Fibromyalgia and Lyme. As an EBV forum there may be info that is helpful to me. We have much to learn from all the communities and in return to share. having spent a lot of time talking with Chronic Fatigue advocates the research they are doing will eventually impact a lot of communities.
I am still treating lyme. With regards to treatment, that has been the million dollar question all we can do is trust our LLD. My LLD believes that it might have kicked in a full blown autoimmune disease. Have been on abx 3 yrs plus IV and not responding have been on most to date. 2 yrs following treatment started finding non specific foci on brain (lyme also can have this happen) but due to lack of response and increase of symptoms this is why they think I may now have ms. Long time before diagnosis therefore we know the possibility that any pathogen unchecked can cause autoimmune disorder only worse in some respects as we have to treat the lyme plus the condition. I also have the arthritis. igenex positive cdc negative. surprise right!
Really would like to see the doc in SC but funds will not allow and my doc is basically out of ideas at this point. The flare ups are leaving me with ongoing disabilities and I am told that it is necessary to treat both and this is not an unusual protocol.
Epstien and mycoplasma both in spinal fluid. Have spoke in length with Prof. GN through e-mail and need to check for myco f strain and also need to check my CD57 again. Have been talking with numerous microbiologists and it seems that we can beat the mycoplasma down but it is as bad if not worse in some respects to lyme. We are never rid of it we can just keep it under check.
Cannot afford to take chances and will have one more opinion prior to going on any tx for MS but to answer your question I think I have been adequately treated but now dr seems concerned and that is why sending for so many opinions tests etc. Of course lyme did not show up on spinal although did not send to private lab as funds would not allow.
Have you any suggestions of a lyme literate Neurologist in my area I live in Hampton Roads. The only one I know and have seen is in NJ. Also I need some good detox info if you have any ideas please.
I Have a member of my group here that has serious Neurophsyciatric Lyme and is not working are you aware of any programs she may qualify for. She needs serious treatment and in home help. She tested positive for rocky mountain, lyme and babs! due to her sensitivity and also phsyciatric issues docs seem unwilling to treat as she lives alone. She is suffering paranoia, rage and apart from going with her to appointments which we may between us need to do, we need a good phsyciatrist that is lyme literate.
Also (sorry for so many questions) do you have any information on lyme and disability claims?
Thank you for your help and concern and for listening to my gabble regarding the unity required in the lyme community.
Wow! I am so sorry that you have been on lyme treatment for the last 3 years and yet the treatment seems to not be working. You are exactly right, your MRI sounds very non-specific and it doesn't seem to indicate demylinating lesions, which even if it did with lyme disease, this would simply not mean anything. I am not familiar with a doctor in your area. I live in Georgia and I am seeing a doctor in Georgia. There is a popular physician in SC that you mentioned and also a Dr. George McCullar in Mobile, Alabama that is very good.
There is a member by the name of Plateletgal in the CFS/Fibromyalgia group that is all in to alternative health care and I am sure she could probably give you some information being that the abx has not been working. I have not started on antibiotics yet, but I have started on a gluten free diet and that has helped some of my symptoms. I don't know what my lyme tests will reveal, but hopefully it is something. I know that it will be expensive, but if I have to travel out of town to get treatment, I am prepared to do so at this point.
The political controversy with lyme disease drives me nuts. All people want and need is the acknowledgement from the medical community so that they can get better. State laws vary in regards to disability claims with lyme disease, but if your friend is that disabled, she should certainly be able to qualify for something.
I am having a lot of MS type symptoms and I believe that any infection that is not treated appropriately certainly has the ability to turn into MS or something even worse. I have been going through all of this for 7 months. You state that it took you a long time to get a dx. How long did it take you to get a dx? Most people I know with lyme disease often get worse before they ever get better. Wonko and Patsy10 are good resources on the lyme board.
I certainly hope you don't have MS, but I hope that you find out what you have so that you can receive the proper treatment. I hope and pray the same for myself. I certainly would not even entertain MS until further lyme treatment could be sought. The side effects of the MS drugs can be worse than the abxs for lyme from what I hear.
I wish more people would post on the EBV board. Sometimes people's questions go unanswered and I myself would certainly like to know more about this virus. I think that it is still very misunderstood and people just end up getting more info on the other boards. Please stay in contact and let me know how things work out for you . You are in my thoughts and prayers.
EBV is a very important virus that through research has been shown to be a possible causative factor in most chronic illness. Not the benign virus that we all thought. I think when we show re-infect for an extended period of time it is just an indicator of the damaged immune system. After all 3 y ears of high re-infect #s hardly seems possible especially when we do not have all the symptoms of the classic mono. All roads seem to lead to MS right now. If they diagnosed the Banjul flu and told me they could make me better that would be fine too. What we have even with lyme is far more complex than just lyme. It is an autoimmune disease complex disorder. Non specific lesions are specific for something when you are so unwell and deteriorating at a rate of knotts.
I guess hope is always there that we will find answers and in the meantime be there to at least as support. Pain is Pain-suffering is suffering those are the same whatever condition we suffer.
There is a lot of info on EBV far beyond the chronic fatigue and in the soup of bacteria and virus' it is interesting (would be more interesting if we did not have to have it!) I have read that it is a possible indicator of an undiagnosed mycoplasma infection........... who knows. I will continue to treat lyme but of course if diagnosed with ms also I would for sure treat both. Cannot risk the continued flare ups. I take a lot of herbal meds also have been down that road also. There is a place for all of it I think. I pray you get well and feel better soon. I will continue to check in :)
It took 9 months and 14 docs to find a diagnosis although I think I had symptoms for years jst not to the degree I do now. I can tell you that after walking pneumonia I never got better so I do feel it was the trigger that opened the doors for everything to switch on. Figured out myself I had lyme then found the lyme drs. I can tell you at least 10 tests till I popped a positive. What I have now is very different in some respects so I just pray for answers. If you have not seen it yet there is a documentary by open eye picures called under our skin. Watch the trailer and you can purchase the dvd if it interests you.
Have faith, take care and know you are not alone in your struggle. Somehow it helps to know :)
I have a feeling that this EBV thing is much more than what many doctors are refusing to admit. I feel like I am at a loss for words and very discouraged right now. I have been to so many doctors and none of them can seem to help me. My neuro told me on the last visit that EBV could possibly turn into MS, but there was no guarantee. I left his office in tears. You are right. I have never had the regular mono type symptoms that many have with EBV. I just don't know what to do. I want the lyme disease test to be positive, but then there are so many side effects with that too. I am now going into month #8 and hearing your story makes me very discouraged. Yes, all roads can lead to MS, but there is the strong possibility that it MAY not be MS. I don't have any good infectious disease doctors in this area, but if you do, you may want to go and visit one. Mine wasn't even familiar with Epstein Barr and laughed at the thought or possibility of lyme disease. I left his office and vowed to never go back again.
Again, Plateletgal has EBV and mycoplasma and is a good resource. You should try sending her a PM and she will be happy to email you some good information on this. I am tired of living my life and worrying about the unknown. I am doing as much as I can do and that is being persistent and constantly going to doctors. Praying that at some point, I will get some answers. My LLMD seems to be very nice and quite concerned. I am even going to call her on Monday regarding the EGD that I had on Friday. There are some possible autoimmune implications even for gastritis.
If you look up CAEBV you will find a different situation. I also do not have the classic symptoms. the criteria mention ebv re-infect for more than 6 months. First CDS is far more than I ever realized. I have a friend with Fibro and is disabled. What I read last night mentions CAEBV chronic activated epestien barr being for some a progressive disabling disease.
It can affect the brain and many other things. Lyme of course you will find is its own animal and if you pop a positive my a miracle 2 wks of doxy is not helpful for most. You need much more. But you must start treatment. Realize Lyme is a clinical diagnosis. The spirochette which I should know how to spell but dont is like the einstein of the syphilis family able to morph and change as needed to evade the antibiotic therapy and because it lives in the blood cells is not free flowing and able to evade our immune system therefore does not show up easily on tests and does not necessarily put all our wbc into action so although we are deathly sick it does not show on the labwork. I am sure you are aware that the cdc does not recognize the bands they used on their own vaccine which is ludicrous as they are lyme specific.
I understand your frustration I live that every day all you want is for the drs to recognize how you feel. you need to fire the dr that ignored your issues and find another. I am sure the lyme board will give you info on a LLMD and also the healingwell board on healingwell.com is awesome. I promise things will get better complications or not most feel much better once you start treatment. I am not the usual. Many do well. Have you tested for any co-infections? CD57? This is an expression of your killer cells and they have no natural enemies other than lyme or AIDS as I understand it. Look at the new 2008 Burruscano guidelines. My friend has an awesome site Misnnesota Lyme fighters Advocacy lots of info there.
But as I mentioned EBV alone is awful and has some awful implications if chronic reactivated. Research coming in every day so we have hope. The one thing you need to do is Always request a copy of your records each visit and mri w report it is your right.
When you start to read the report you will sometimes be shocked and there may be a time you need to start fresh without all the records as one bad apple turns the other apple head Drs into rotton ones too. They may need to be ommitted from your info.
Please know we understand and we go through the same thing. Like I said before somehow it makes us feel less alone. I can tell you my husband and friends still dont understand after all this time. Only if you go through the issues do you understand. What are your symptoms?
Hi ! I'm happy to hear that you were tested for mycoplasma infection. Are you currently being treated for mycoplasma, as well as borrelia burgdorferi bacteria ? I thought this link may interest you.... there are several good research articles on lyme disease and co-infections (including mycoplasma):
I hope that all is well today. I am doing much better than yesterday. I have a great LLMD that I just started going to and once I get my results back from Igenix, which should be this Thursday, we are going to talk about treatment. I was told that I would have to be on therapy for quite some time with my low CD57 results. I will continue to be followed up by my neurologist as well. I would certainly qualify to have CAEBV with my levels being so high. My LLMD told me that she would retest in the next few months to see what my levels are. I am going to also request the mycoplasma test.
Yes, I did get tested for WB lyme and the co-infection panel for the Southeast. I had to shell out close to $1000.00 but I will rather know than not know. I am going to read the article that Platelet sent over to you. I am sure that it has some good information.
Hang in there and I will be checking on you often. Can you believe that it is snowing in Georgia!!!!!!!!!! I have 4 inches of snow outside today and of course when it snows down here, everything shuts down.......LOL. I pray that I don't have to work tomorrow. LOL
I am sorry to hear everything you have been going through. I have very high EBV titers and have recently tested low on the CD57, but my Lyme tests were negative. I have not had the Igenex test yet, but my doctor started me on a trial of doxycycline. I have been extremely ill over the past year and a half and was hospitalized in Oct. Still a struggle everyday. I have both symptoms of EBV and Lyme. Never had a spinal tap. Not much is known about EBV, in fact many doctors where I live don't believe it can be chronic. I visited a Fibro Fatigue Center and they believe EBV and Lyme can be chronic and cause Fibromyalgia and Chronic Fatigue. They are experimenting with antiviral drugs like Valtrex to treat EBV, but I haven't gone this route because the Lyme may be the main problem. They will not yet say for sure if EBV is linked to MS, but the HHV-6 virus is proven to cause MS. My personal opinion is any chronic infection can cause an autoimmune disorder.
I have been getting IVs with high amounts of vitamin C which seemed to help my symptoms. A few months ago, my digestion was shutting down and I could not eat and now I can at least eat and drive myself to doctor appointments. I am also not in as much pain. There is also a product called Immunfactors which have formulas for EBV, mycoplasma infection, Lyme, etc. I intend to try them once through a round of antibiotics.
I hope you find the answers you are looking for. I think we are all constantly searching for answers. We can all continue to support each other.
That is great that your doc is treating you. How much doxy are you taking? Thankfully lyme is a clinical diagnosis for those drs who are prepared to treat. I have read so much last few years I am sure you also have read the research. What amazes me is that even though their profession drs choose not to look at all the most recent research and they certainly do not like too many questions. Iam sorry to hear you ended up in hospital. I was diagnosed with scurvy at one point. I think the bacteria just eats up all the vitamins and we need the extra. Vitamin D was extremely low also. I am sure you are aware of the lyme debate regarding testing and treatment so a negative test is not necessarily so. Good thing you tested CD57! Good luck to you and let me know how you are doing!
Yes I am still treating both. I have been corresponding with some professors and microbiologists and I canot seem to keep the mycoplasma under control for long. I asked straight out one of the leaders in research in that area and they told me will be present always just have to keep under check. Does concern me though knowing everyone in the family is probably infected. I guess genetic disposition plays a huge part. Thank you for the info :)
Yes! Have read some of this info and have been corresponding with the wonderful proffessor himself. I am thrilled to see at last his wonderful work has been recognized. I did contact the CFSociety on one of the articles I read and was thrilled to find out there is a lot of research and was told in the next 2 yrs it would be released. From what I was told it runs in 10 yr cycles is that correct?
I have been on all the meds for mycoplasma and actually following a bout of walking pneumonia never got well. I understand that CFS is not at all as we expect or how it sounds it is a debilitating illness. I also was talking via e-mail with a chap in the UK who was dxd with fibro/chronic fatigue and he was researching on behalf of some members of the government. he had the disease and sadly his wife and child also were showing signs. We live in a military area and people are dropping like flies with mysterious diseases some are children with complicated diseases that are very uncommon,,,, so many in a small area. I wish I could say i am surprised. That is another story. Infuriated by what I have learned the last few years and feel like moving to some remote mountain and living away from all government/doctors only I am too tired!!!!!!!!!!!!LOL
Seriously I think the man is amazing he has shown great courage and it has paid off. I only wish he would enroll me in some program. I want to be a ginuea pig if that is what it takes to get well.
I do believe that my family has the gene expression that can lead to CAEBV. I have tried to figure out why my father -now passed my younger sister and I have had a lifetime of over active immune systems then my illness. My father passed and I actually had the hospital keep samples of his nervous system as I am so scared for my sister as for some reason I always felt some genetic disposition led me here and she is so similar with the issues she faces and my father although passing from other causes, ended up with massive neurological issues and unable to walk and I think it was partly from a condition similar to which I am facing. It was hard to have to ask the coroner to keep samples as i knew my dad would be furious they were doing the autopsy and I was sooo sad to know there was no choice. After putting the grief aside- I decided there may be a gift my father can leave and that would be knowledge that may help save my sister from suffering ..........you never know. So i had them go back after the fact (that was even harder knowing they had to do it again)
I pray hard for answers and know in my heart of heart that the suffering of the last few years cannot have been in vain. Know more than ever where my life has to take me and don't take a moment for granted. I just wish for some good days without pain. Every day is a good day that we wake up so lets say better days without pain :)
The new health reform plan is scaring me. The tests we take for granted may no longer be available if the government decides to control everything. Standardized health care if you do not pay for it I understand-but private insurance there is no way this can happen. I am from the UK and the assistance given to people with disabilities is far superior than what we have here-although you do wait a lifetime for tests etc...
I am going to have to file disabiltiy. I have put it off as long as I could. Until I find stability in my health there is no way I can work. It is a hard decision. worked all my life and now i feel defeated. I pray I can just be well and that we can all be well.
thank you again for the info
If you are feeling worse from the antibiotics, please consider that it may be because you have a mycoplasma (L-form bacteria) infection and not necessarily lyme disease.
I have herxing symptoms and yet my lyme tests have been negative. I found out that I have overwhelming infections.... viral, but also bacterial. I would rather treat the mycoplasma infection because I believe there are less risks (than taking antivirals, which are immune suppressants) and because some of the success stories have been amazing.
Here were my questions that I asked Dr. Nicolson and here is his responses:
"Is there any evidence that these pathogen killing treatments lower the risk for cancer ? One thing I find fascinating is that since I started my treatment, I’ve been watching a mole on my left ankle slowly disappear."
"I know that people with CFS have a high risk for thyroid cancer. In your opinion, does this have anything to do with mycoplasma infection ?"
"Also, I was wondering whether or not you think mycoplasmas could alter our DNA ?"
PROFESSOR NICOLSON'S REPLY: Excellent questions. My own studies on breast and ovarian cancer indicate that Mycoplasma infections are quite common in advanced cases, and experimental studies indicate that these infections increase the rate of cancer progression to more malignant pheontypes. I presented (by invitation) at the American Academy of Environmental Medicine that Mycoplasma tests, if positive, can be used to identify women who will die and die more quickly from their breast and ovarian cancers. Those women with the infection were at significantly greater risk of dying with highly progressive cancers.
Independent from my studies are those published by the Armed Forces Institute of Pathology in Washington DC indicating that Mycoplasma fermentans can induce carcinogenesis in cultured cells. Treatment of the cell cultures with the appropriate antibiotics, in this case doxycycline, prevented the Mycoplasma-induced carcinogenesis. The investigators went on to show that genetic mutations occurred more commonly in the Mycoplasma-infected cultures, and oncogenes were induced. They Mycoplasma turned out to be a co-factor or promoter not a direct inducer of carcinogenesis. This probably occurs because the intracellular Mycoplasma stimulates the release of Reactive Oxygen Species that can break and modify DNA.
So it seems to me that mycoplasma may be able to alter our DNA (gene expression). Remember the movie Erin Brockovich ? I think the physician that Erin (Julia Roberts) had consulted in the movie told her that Chromium 6 can alter your DNA. Well if Chromium 6 can alter DNA... what else can ?
"bacteria vs. genetic predisposition: the spread of chronic disease in families"
I have thought about mycoplasma infection, but would this lower my CD57? I tested negative for mycoplasma infection from the Fibro Center, but I also tested negative for Lyme. Maybe the test for mycoplasma is not reliable just like the lyme tests.
I tried one of the natural products you are using and I believe I had an allergic reaction to one of the plants used in the formula, so I stopped. The IVs with Vitamin C gave me strong herx reaction, so I am definitely battling infections. I am taking 300 mg of doxy a day for 6 weeks to see if this brings my CD57 up, I guess that will be evidence I am dealing with something bacterial in addition to the EBV. The problem is I seem to have more symptoms that relate to Lyme which include the muscle twitches, insomnia, anxiety, GI problems, sore throats, stiff neck, joint aches, stiff muscles, rashes, etc.
I was going to try the Immunfactors for EBV and Lyme once done with antibiotic. I believe there is a formula for mycoplasma infections too which I may try and see if I have herx reaction. Have you had any experience with these??
My doctor is treating me with a trial of 300 mg a day of doxy for 6 weeks and then wants to take my CD57 again and see if it improves.
My vitamin D was extremely low also and I have osteopenia.
I live near a VA medical center and wonder if all the illnesses in my area are related to these mycoplasma infections. We also have a lot of Lyme Disease in our area.
My illness got worse after a bad viral infection last winter and I haven't been able to recover. I cannot work either and have been thinking of disability. I am officially diagnosed with Fibromyalgia and Chronic Fatigue Immune Dysfunction Syndrome, though I believe my problems are chronic infections. Many doctors don't believe that chronic infections play a role in these disorders.
I hope we all can somehow get better. Keep in touch.
I just wanted to clarify something I posted the other day about treating EBV with anti-virals... The Fibro/Fatigue Center will not treat me with an anti-viral because they believe my EBV is chronic and not reactivated. If the EBV is reactivated, it is possible the anti-viral med will put it back into dormancy. If EBV is chronic, an anti-viral is not a good option as the virus will not go dormant. As PlateletGal said, anti-virals do suppress the immune system and the Fibro Center said they are very hard on the body.
OK, I feel better now. I just didn't want people to think an anti-viral med is the solution to EBV in all cases.
"The Fibro/Fatigue Center will not treat me with an anti-viral because they believe my EBV is chronic and not reactivated. "
I agree. I think this is why I try to discourage members, who are being told that they have "chronic EBV" from being too focused on their lab results.
"Recent research has shown that in Fibromyalgia/CFS patients there is an irregular molecular weight for cells and enzymes that act as the body's defense mechanisms."
"Viral channels remain open as expressed by RNase L weights long after the viruses have effectively been eliminated. This means that your body still thinks it is fighting infections long after they have been beaten, consuming energy resources and destroying otherwise healthy cells and thereby contributing to the overall feeling of exhaustion."
I healthy one min,the next i collapsed,hands started to tremmor violently,cud hardly stand up,after that i suffered a fever 4 11wks,cudnt get out of bed,legs,hands,neck when turned either way trembled,and shook,felt very sick,dizzy,faint,upper and lower back hurt like mad,like a burning pain,acid reflux,cant go down stairs as legs and arms shake badly,very tired and unwel,went drs and hospital several times,they didnt no wot was wrong but knew i was unwel,then dr just did a blood test for EBV,even though he said it was unlikely because i had no sore throat,or swollen glands,just pain under my left rib cage,well test came back positive for ebv,i have been ill for 4 months nw,cant leave my home as im so unwel,neurogist says my tremmors wil go in time but im not convinced,i have lost hope of ever feeling better,its the tremmors thats disturbing me the most as they wont go,dr also says i have post viral fatigue syndrome and that i shud increase exercise each day,wel they dont get it,its just not about feeling tired,its the feeling of unwelness that prevents me from doing this,also the tremmors on my legs frightnen me as i can hardly stand at times,this has totally ruined my life,has any1 experienced ebv tremmors and made a full recovery,i wud be greatful for any info,thanks.
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