Guest guest Posted August 24, 2006 Report Share Posted August 24, 2006 Can anyone in simple with a simple explination for my lyme brain tell me if the liver enzymes have an affect on our brains? I have googled everything with the word sleepiness and one thing that does pop up is something about ammonia and protein making some people sleepy. I don't know if being excessive sleepy and feeling like my head is in a high altitude is a bad symptom for anyone else but for me it has gone on for over 20 years. I have had some remissions and then it returns. I have gone through times when I would feel better until I had a period then it would be recurring during that time. I always thought that getting through menapause I would be over that drowsey feeling. Not so. Why does this happen to me worse than anyone I have ever read that has lyme? Lyme DX two years ago with IGENEX western blot. Provigil used to help then it got to feeling like after I took it the sleepiness would be worse then I started adderall and it helps but I still take two provigil and on some days they do help then other days I think the provigil makes me more sleepy. All I can find is liver and enzyme stuff. Tony, do you know anything about womens hormones and how any of these things disscussed would affect them? Thanks, sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2006 Report Share Posted August 24, 2006 ****** Tony, do you know anything about womens hormones and how any of > these things disscussed would affect them?******** Sandy I really think it's jhard not to believe hormonal issues play a huge role in infectiions. Women are 4 times as likeley to have cfs/fibromyalgia, you may also notice that we have a PAula CArnes not a PAUL CArnes and there's a Penny,NElly,Kate, BARb and then you get an .There's also the ENDOMETREOSIS that goes hand in hand with these conditions. tony > > > Can anyone in simple with a simple explination for my lyme brain > tell me if the liver enzymes have an affect on our brains? > > > I have googled everything with the word sleepiness and one thing > that does pop up is something about ammonia and protein making some > people sleepy. > > I don't know if being excessive sleepy and feeling like my head is > in a high altitude is a bad symptom for anyone else but for me it > has gone on for over 20 years. > > I have had some remissions and then it returns. I have gone through > times when I would feel better until I had a period then it would be > recurring during that time. > > I always thought that getting through menapause I would be over that > drowsey feeling. > > Not so. > Why does this happen to me worse than anyone I have ever read that > has lyme? > > Lyme DX two years ago with IGENEX western blot. > > Provigil used to help then it got to feeling like after I took it > the sleepiness would be worse then I started adderall and it helps > but I still take two provigil and on some days they do help then > other days I think the provigil makes me more sleepy. > > All I can find is liver and enzyme stuff. > > Tony, do you know anything about womens hormones and how any of > these things disscussed would affect them? > > Thanks, > sandy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2006 Report Share Posted August 25, 2006 We have three of us sick in my family with Lyme disease. The two men are not nearly as sick as I have been, but they clearly have Lyme. I may have gotten sicker because of a particular tick bite or combination of bacteria. I am the only one of us who got a bull's eye rash after one tick bite. My son's symptoms have been neurological while my husband's have been muscle pain and prostate problems. In any case, the rate of illness for cfs is higher in women. I doubt it is higher in women for Lyme but the symptoms may be more severe. Any ideas? a > > ****** Tony, do you know anything about womens hormones and how any > of > > these things disscussed would affect them?******** > > Sandy > I really think it's jhard not to believe hormonal issues play a huge > role in infectiions. Women are 4 times as likeley to have > cfs/fibromyalgia, you may also notice that we have a PAula CArnes not > a PAUL CArnes and there's a Penny,NElly,Kate, BARb and then you get > an .There's also the ENDOMETREOSIS that goes hand in hand with > these conditions. > tony > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2006 Report Share Posted August 25, 2006 HORMONES! There's a difference between functionable and cfs/fibromyalgia /lyme non functionable.I wouldn't worry about general public ilness's because there so widespread throughout the community... we are more focused on the disability aspect of our ilness's.Most people can't do too much? or am I missing something.. Anyways, back to experimental to keep the a Carnes back channel dirt files going.. cheers tony > > We have three of us sick in my family with Lyme disease. The two men > are not nearly as sick as I have been, but they clearly have Lyme. I > may have gotten sicker because of a particular tick bite or > combination of bacteria. I am the only one of us who got a bull's eye > rash after one tick bite. My son's symptoms have been neurological > while my husband's have been muscle pain and prostate problems. > > In any case, the rate of illness for cfs is higher in women. I doubt > it is higher in women for Lyme but the symptoms may be more severe. > Any ideas? > > a > > > > > > ****** Tony, do you know anything about womens hormones and how any > > of > > > these things disscussed would affect them?******** > > > > Sandy > > I really think it's jhard not to believe hormonal issues play a huge > > role in infectiions. Women are 4 times as likeley to have > > cfs/fibromyalgia, you may also notice that we have a PAula CArnes > not > > a PAUL CArnes and there's a Penny,NElly,Kate, BARb and then you get > > an .There's also the ENDOMETREOSIS that goes hand in hand with > > these conditions. > > tony > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2006 Report Share Posted August 25, 2006 There's also the ENDOMETREOSIS that goes hand in hand with > these conditions. > tony having often read or lurked that you refer to endo on many occasions, I have tried to research this, and in the UK, gyneas just don't know the link, they like to treat every part of the body as one unit! can you share any of your experiences or medical pointers to why endo goes hand in hand? been trying to educate my Gynea for about 18 months even as far as producing too much Oestrogen and how a aromatase inhibitor may help, yet its all new to them and out of off licence here Tony could you share in layman's terms you're underlying of the endo connection I rarely post, but would appreciate some feedback on this one, if off topic, feel free to email me privately TIA J Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2006 Report Share Posted August 25, 2006 Sandy, please forgive me if you have posted this before, but what has been done these two years to treat your Lyme? Yes, liver dysfunction and amonia levels can create brain fog and even hallucinations, but the underlying cause in your case is probably borrelia in the central nervous system. Many cfs and Lyme patients have severe brain function problems. If you talk to them they will start to say something and then space out. Some even go into mini comas where they are unconscious for two or three hours. So...what are the docs doing for your Lyme? a > > Can anyone in simple with a simple explination for my lyme brain > tell me if the liver enzymes have an affect on our brains? > > > I have googled everything with the word sleepiness and one thing > that does pop up is something about ammonia and protein making some > people sleepy. > > I don't know if being excessive sleepy and feeling like my head is > in a high altitude is a bad symptom for anyone else but for me it > has gone on for over 20 years. > > I have had some remissions and then it returns. I have gone through > times when I would feel better until I had a period then it would be > recurring during that time. > > I always thought that getting through menapause I would be over that > drowsey feeling. > > Not so. > Why does this happen to me worse than anyone I have ever read that > has lyme? > > Lyme DX two years ago with IGENEX western blot. > > Provigil used to help then it got to feeling like after I took it > the sleepiness would be worse then I started adderall and it helps > but I still take two provigil and on some days they do help then > other days I think the provigil makes me more sleepy. > > All I can find is liver and enzyme stuff. > > Tony, do you know anything about womens hormones and how any of > these things disscussed would affect them? > > Thanks, > sandy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2006 Report Share Posted August 25, 2006 HA!!!! Tony, you made my day. Yep, I am becoming infamous, or maybe I flatter myself. Yes, there is a difference for now - some with these infections manage to keep functioning, at least for awhile. But don't you wonder what causes Alzheimer's????? I want my husband to still have a brain at age 80. All three of us are still treating Lyme disease. a > > HORMONES! > There's a difference between functionable and cfs/fibromyalgia /lyme > non functionable.I wouldn't worry about general public ilness's > because there so widespread throughout the community... we are more > focused on the disability aspect of our ilness's.Most people can't do > too much? or am I missing something.. > Anyways, back to experimental to keep the a Carnes back channel > dirt files going.. cheers tony > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2006 Report Share Posted August 26, 2006 --I have been three time to MO to see a LLD and been on different antibiotics. Sometimes I feel like there is not anyone like me because this is one of my major problems and has since the beginning. I have had a lot of tests before I found out I had lyme and often they would be abnormal. Most of my natural killer cells and subsets of them are either real high or real low. I have been on heparin shots. I did b12 shots the glutatione atp shots. - In infections , " pjeanneus " <pj7@...> wrote: > > Sandy, please forgive me if you have posted this before, but what has > been done these two years to treat your Lyme? Yes, liver dysfunction > and amonia levels can create brain fog and even hallucinations, but > the underlying cause in your case is probably borrelia in the central > nervous system. Many cfs and Lyme patients have severe brain function > problems. If you talk to them they will start to say something and > then space out. Some even go into mini comas where they are > unconscious for two or three hours. So...what are the docs doing for > your Lyme? > > a > > > > > > Can anyone in simple with a simple explination for my lyme brain > > tell me if the liver enzymes have an affect on our brains? > > > > > > I have googled everything with the word sleepiness and one thing > > that does pop up is something about ammonia and protein making some > > people sleepy. > > > > I don't know if being excessive sleepy and feeling like my head is > > in a high altitude is a bad symptom for anyone else but for me it > > has gone on for over 20 years. > > > > I have had some remissions and then it returns. I have gone > through > > times when I would feel better until I had a period then it would > be > > recurring during that time. > > > > I always thought that getting through menapause I would be over > that > > drowsey feeling. > > > > Not so. > > Why does this happen to me worse than anyone I have ever read that > > has lyme? > > > > Lyme DX two years ago with IGENEX western blot. > > > > Provigil used to help then it got to feeling like after I took it > > the sleepiness would be worse then I started adderall and it helps > > but I still take two provigil and on some days they do help then > > other days I think the provigil makes me more sleepy. > > > > All I can find is liver and enzyme stuff. > > > > Tony, do you know anything about womens hormones and how any of > > these things disscussed would affect them? > > > > Thanks, > > sandy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2006 Report Share Posted August 26, 2006 <irishdrought1955@...> wrote: > > --I have been three time to MO to see a LLD and been on different > antibiotics. Which ones, what doses, and for what period? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2006 Report Share Posted August 28, 2006 ****** Tony could you share in layman's terms you're underlying of the endo > connection*********** Tia I watched a documentary on women giving there frank and honest accounts of what life was like with endometreosis. It didn't sound far different than what most females are going thru on our forums. I told someone a few years earlier that all your pain and complaints sound like PELVIC INFLAMMATORY DISEASE, get checked for endometreosis. Anyways she ended up visiting her gyno and at 28 she had everything so diseased, everything needed to be removed.Another friend kept complaining about cycles of pelvic pain and discomfort and she pushed and shoved for answers and sure enough she has endo. Another person comes on cfs about.com and she swears that her endometreosis surgery has completely cleared her fibromyalgia after 20 plus years of suffering.Me being the person I am corresponded a question and answer campaign on the forum - I just basically felt it needed more than just surgery(GUT FEELING).... where are the antibiotics to clear some of the mess??? Sure enough over several Question and answer requests on the forum, she described that she had been given cipro which landed her some possable C difficile infection, which was treated aggresively, that made her well.The C difficile is treated with vancomycin and I think they threw a few other drugs at her as well.She also sent me all her hospital records and she drew a negative for C difficile, so the aggresive treatments where in my opinion also capable of targeting staphyloccal infections. > > There's also the ENDOMETREOSIS that goes hand in hand with > > these conditions. > > tony > > having often read or lurked that you refer to endo on many occasions, I have > tried to research this, and in the UK, gyneas just don't know the link, > they like to treat every part of the body as one unit! > > can you share any of your experiences or medical pointers to why endo goes > hand in hand? > > been trying to educate my Gynea for about 18 months even as far as producing > too much Oestrogen and how a aromatase inhibitor may help, yet its all new > to them and out of off licence here > > Tony could you share in layman's terms you're underlying of the endo > connection > > I rarely post, but would appreciate some feedback on this one, if off topic, > feel free to email me privately > > TIA > > J > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2006 Report Share Posted August 28, 2006 I've never had a problem with endometriosis or pain with menstrual cycle. I just had joint pain for 20 years before coming down with full blown Lyme disease. a > > > ****** Tony could you share in layman's terms you're underlying of > the endo > > connection*********** > Tia > I watched a documentary on women giving there frank and honest > accounts of what life was like with endometreosis. It didn't sound > far different than what most females are going thru on our forums. I > told someone a few years earlier that all your pain and complaints > sound like PELVIC INFLAMMATORY DISEASE, get checked for > endometreosis. Anyways she ended up visiting her gyno and at 28 she > had everything so diseased, everything needed to be removed.Another > friend kept complaining about cycles of pelvic pain and discomfort > and she pushed and shoved for answers and sure enough she has endo. > Another person comes on cfs about.com and she swears that her > endometreosis surgery has completely cleared her fibromyalgia after > 20 plus years of suffering.Me being the person I am corresponded a > question and answer campaign on the forum - I just basically felt it > needed more than just surgery(GUT FEELING).... where are the > antibiotics to clear some of the mess??? Sure enough over several > Question and answer requests on the forum, she described that she had > been given cipro which landed her some possable C difficile > infection, which was treated aggresively, that made her well.The C > difficile is treated with vancomycin and I think they threw a few > other drugs at her as well.She also sent me all her hospital records > and she drew a negative for C difficile, so the aggresive treatments > where in my opinion also capable of targeting staphyloccal infections. > > > > > > > > > > > > > > There's also the ENDOMETREOSIS that goes hand in hand with > > > these conditions. > > > tony > > > > having often read or lurked that you refer to endo on many > occasions, I have > > tried to research this, and in the UK, gyneas just don't know the > link, > > they like to treat every part of the body as one unit! > > > > can you share any of your experiences or medical pointers to why > endo goes > > hand in hand? > > > > been trying to educate my Gynea for about 18 months even as far as > producing > > too much Oestrogen and how a aromatase inhibitor may help, yet its > all new > > to them and out of off licence here > > > > Tony could you share in layman's terms you're underlying of the > endo > > connection > > > > I rarely post, but would appreciate some feedback on this one, if > off topic, > > feel free to email me privately > > > > TIA > > > > J > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2006 Report Share Posted August 28, 2006 a No problems in the hips joints? > > > > > > There's also the ENDOMETREOSIS that goes hand in hand with > > > > these conditions. > > > > tony > > > > > > having often read or lurked that you refer to endo on many > > occasions, I have > > > tried to research this, and in the UK, gyneas just don't know > the > > link, > > > they like to treat every part of the body as one unit! > > > > > > can you share any of your experiences or medical pointers to why > > endo goes > > > hand in hand? > > > > > > been trying to educate my Gynea for about 18 months even as far > as > > producing > > > too much Oestrogen and how a aromatase inhibitor may help, yet > its > > all new > > > to them and out of off licence here > > > > > > Tony could you share in layman's terms you're underlying of the > > endo > > > connection > > > > > > I rarely post, but would appreciate some feedback on this one, if > > off topic, > > > feel free to email me privately > > > > > > TIA > > > > > > J > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2006 Report Share Posted August 29, 2006 Not that I can recall. I did have one bout of some severe pain in the groin, but it just disappeared and only lasted a day. I had more knee problems and small finger joint pain. Even there it was more in the tendons around the small joints. I still have that but no knee pain or swelling. a > > a > No problems in the hips joints? > > > > > > > > > > > > > There's also the ENDOMETREOSIS that goes hand in hand with > > > > > these conditions. > > > > > tony > > > > > > > > having often read or lurked that you refer to endo on many > > > occasions, I have > > > > tried to research this, and in the UK, gyneas just don't know > > the > > > link, > > > > they like to treat every part of the body as one unit! > > > > > > > > can you share any of your experiences or medical pointers to > why > > > endo goes > > > > hand in hand? > > > > > > > > been trying to educate my Gynea for about 18 months even as far > > as > > > producing > > > > too much Oestrogen and how a aromatase inhibitor may help, yet > > its > > > all new > > > > to them and out of off licence here > > > > > > > > Tony could you share in layman's terms you're underlying of the > > > endo > > > > connection > > > > > > > > I rarely post, but would appreciate some feedback on this one, > if > > > off topic, > > > > feel free to email me privately > > > > > > > > TIA > > > > > > > > J > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2006 Report Share Posted August 29, 2006 a So how's your mobility? I think that when your knee is playing up the surrounding tissue especially the microcirculation is going to be hard pressed to do it's job. I found when I started playing soccer recently that the tissue rips away from the bone when you haven't pushed the envelope on an area that's been long term inflammed.BAsiclly alot of what you also need to address with these ilnesses is age related diseases.. By the way, what was this thread about? Also the backchanneling that I've received from your foes on the experimental site has you appearing in the next fifty cent video. cheers tony. > > > > > > > > > > There's also the ENDOMETREOSIS that goes hand in hand with > > > > > > these conditions. > > > > > > tony > > > > > > > > > > having often read or lurked that you refer to endo on many > > > > occasions, I have > > > > > tried to research this, and in the UK, gyneas just don't > know > > > the > > > > link, > > > > > they like to treat every part of the body as one unit! > > > > > > > > > > can you share any of your experiences or medical pointers to > > why > > > > endo goes > > > > > hand in hand? > > > > > > > > > > been trying to educate my Gynea for about 18 months even as > far > > > as > > > > producing > > > > > too much Oestrogen and how a aromatase inhibitor may help, > yet > > > its > > > > all new > > > > > to them and out of off licence here > > > > > > > > > > Tony could you share in layman's terms you're underlying of > the > > > > endo > > > > > connection > > > > > > > > > > I rarely post, but would appreciate some feedback on this > one, > > if > > > > off topic, > > > > > feel free to email me privately > > > > > > > > > > TIA > > > > > > > > > > J > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2006 Report Share Posted September 1, 2006 thanks for the info Tony, about the endo in the UK they haven't a clue or wish to fob us off with invasive treatments, synthetic treatments to avoid casting a real observations to why many females unnecessarily endure pelvic or gynea issues and there are many! having researched this for some time now, cant make progress as no one will treat the endo being associated with any other intracellular bacteria for starters.......... thanks again Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2006 Report Share Posted September 1, 2006 e, In my experience, I also think that bacteria may be a factor in endometriosis. If you can't get anyone to go there, do you have any other signs of infection that you could potentially get treatment for and see if some of your endo symptoms subside? This is how I and most of my friends have had to approach our illness (fortunately, I don't have endo problems, but a lot of my friends do). Even though I started becoming suspicious of a bacterial basis for my illness, I had no obvious signs of infection until I pursued a potentially infected crown, which led to seeing a dental specialist who upon a deep probe found pus around my wisdom teeth. I had them removed and the jaw underneath was black and green and full of necrosis. Basically my jaw was rotting. had a pretty large chunk of it removed, and got sicker than I've probably ever been in my life. But antibiotics finally helped me get better than I had been in quite a while. If you can get someone to find some kind of infection brewing somewhere, and treat you for that, and you see improvements, you might get a doc on board to keep treating you in that direction. It's a very slow process and often takes several attempts, because docs simply have their heads buried in the sand when it comes to considering an infectious basis for many of our diseases. pennye Elliott <justine.elliott@...> wrote: thanks for the info Tony, about the endoin the UK they haven't a clue or wish to fob us off with invasive treatments, synthetic treatments to avoid casting a real observations to why many females unnecessarily endure pelvic or gynea issues and there are many!having researched this for some time now, cant make progress as no one will treat the endo being associated with any other intracellular bacteria for starters..........thanks again Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2006 Report Share Posted September 1, 2006 Penny pretty much exhausted my avenues, as have borreliosis and babs, treatment been great, yet no support at all, not much my end from a personal stance that has not been covered, but working to why the endo is now severe the fact is, in the UK no one will treat us, or have a clue of the connections, even if you pull out the research they will not endorse any criteria other than the pointless and meaningless guidelines all UK lit states babs and lyme is rare, of course it is if you don't allow for it to be a notifiable disease except for Scotland 1,000s have been mis dx - long story hey coming across the pond soon back to lurking again, funny enough its been such a long time since I have been a member I guess I am blushing to post after all this time e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2006 Report Share Posted September 1, 2006 Don't be shy. :-) I guess my point is, can you find something more mainstream to treat, that isn't as controversial as the lyme/babesia stuff? Because in my experience the people who are fighting multiple infections, including lyme, seem to still benefit when treating the other infections because they are universally acknowledged. Of course, most of the people's experiences I know best, are treating osteomyelitis and are viewing Lyme as a side issue. The trick is finding an infection you can identify. Then get your docs on board, and as they watch you respond, they tend to become more open minded about the other issues, like lyme (of course, you've got to have a doctor who actually cares about his profession and his patients, for whatever motivation, or is just more interested in his bottom line). penny e Elliott <justine.elliott@...> wrote: Penny pretty much exhausted my avenues, as have borreliosis and babs, treatment been great, yet no support at all, not much my end from a personal stance that has not been covered, but working to why the endo is now severe the fact is, in the UK no one will treat us, or have a clue of the connections, even if you pull out the research they will not endorse any criteria other than the pointless and meaningless guidelines all UK lit states babs and lyme is rare, of course it is if you don't allow for it to be a notifiable disease except for Scotland 1,000s have been mis dx - long story hey coming across the pond soon back to lurking again, funny enough its been such a long time since I have been a member I guess I am blushing to post after all this time e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2006 Report Share Posted September 1, 2006 e It's a shame that a real story like that, that still possably exists at the cfs.about forum hasn't created a little enthusiasm and questioning. Here's someone suffering 20 plus years of fibro that's come out the front door of a hospital cured by removing a large part of infection and doing a few drugs over a shorter period, and the ovaries/endo really correlates with a high blood flow region of the anatomy, that possably puts it at greater risk when you have parasitic bacteria adhering to your red cells.. I try and make people take up on the idea that often these ilnesses ain't so invisable..but it's like hitting a brick wall. My opinion is with these ilnesses you need dialysis to clean up the blood and a litre of red cells infused to allow the body to truck around oxygen and nutrients to get the body healed, also most red cells are not great- as it's also partly a red cell disease. You may also have to realise that your body is actually burn''t out and needs to have therapy that addresses adhesions/pleuresy and the like.When flaring, something that feels like acid, is allowed to flow thru your veins.. > > thanks for the info Tony, about the endo > > in the UK they haven't a clue or wish to fob us off with invasive > treatments, synthetic treatments to avoid casting a real observations to why > many females unnecessarily endure pelvic or gynea issues and there are many! > > having researched this for some time now, cant make progress as no one will > treat the endo being associated with any other intracellular bacteria for > starters.......... > > thanks again > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.