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My husband has had 2 active lymes bouts, and we're struggling w/ misinformation and a total lack of decisiveness in the medical arena regarding this disease. We've been together almost 20 yrs and I see significant changes in not only his physical abilities, but neurologically as well. The medical community seems to be confused by this disease, I feel like I need to reach out to others dealing w/ this to find solutions to the memory loss and other acute mental issues. Any help from Lymes suffers would be greatly appreciated cuz he's dealing w/ the physical stuff OK but is really frustrated w/ the mental stuff...
 

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Several friends struggle with chronic Lyme. Their symptoms are wide and varied. The medical world is divided on treatment. There are those who hold that after a given period of antibiotic treatment, the Lyme is gone and it's not Lyme, it's something else. Others hold that the spyrocetes "hide", and that the symptoms you mention are caused by Lyme. One friend used large doses of antibiotics for years, but doctors are proscribed from treating this way. Another has had good luck using a variety of herbal and other products, but in some part thinks it may be just good luck and waiting it out. There are few doctors specializing in long-term Lyme.
 

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I don't know what treatment your DH has had. Doxycycline is the go to oral antibiotic. However, Rocephin (ceftriaxone) iv is the only one that will treat lyme's and cross the blood brain barrier. I can't help you much other than that. Sadly it is a contentious issue. I worked with a neurologist who was very passionate on the subject (maybe a bit too passionate), but he ended up leaving the hospital because of conflicts with infectious disease doc because of his heavy handed prescribing of antibiotics.
 

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My daughter had lyme at one time - she got to a point where her one leg swelled up and she couldn't walk on it - after two months of Doxycycline she got better - that was three years ago - so far she is doing ok - I'm keeping my fingers crossed that she remains that way - but yes the medical profession really doesn't have this disease figured out yet -
 

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I have chronic Lyme and had a bout this summer that sent me to the ER. Doctor put me on tetracycline this time. Do some research online and see if you can find a "lyme literate" doctor in your area.
 

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Wrote out long post and in meantime forum logged me off and after logging back on the post was gone.

Anyway I am Rocky Mountain Spotted Fever survivor. Similar disease except most RMSF victims get super high fever and the skin spots shortly after intial infection by the bacteria. These folk guaranteed to spend few weeks in hospital. That fever apparently is a killer.

I was one of the minority that didnt get the high fever or spots. Probably thought at time it was flu or something if I had any fever. Ten years passes and I am getting more and more easily fatigued to where I can barely walk across the room or out to the car. See the RMSF bacteria do real job on your circulatory system even if your immune system fends them off from killing you quick.

The docs I went to insisted that it had to be lifestyle disease cause well the symptoms mimicked such. Remember I said the bacteria damage circulatory system. but I didnt have high blood pressure or clogged arteries or high blood sugar or any of that. So last doc insisted it must be some unusual heart defect. I had been reading and thought LYME since I live in tick city, so INSISTED strongly that we do tick panel. He vehemently disagreed it was tick related, but said he would agree if I would do a stress test though frankly thought that was pointless, told him I could barely walk across room on my own, sure not going to be able to run on a treadmill with bunch carp hooked up to me. Week later I got call that I tested positive for RMSF. He as per law notified local health dept. Its not contagious without tick as intermediary, but state wants to keep track of cases. County nurse that I talked to knew more about RMSF than the docs. She just said she recommended I go to the specialist, didnt mention how that was going to be paid. Never heard from her again. He then made appt for me with specialist (didnt ask first) as he didnt want to deal with it and probably most worried I would sue him. Insurance didnt pay penny of the initial $2000!!!! office visit that involved tick panel, only counted $300 of it against my deductible. They sure werent going to pay a specialist. Apparently fine print in policy gave them loopholes to get out of anything beyond visit to diagnose and treat the sniffles. Thanks Blue Cross..... makes me wonder why Republicans are so upset losing those worthless private insurance policies that cover nothing.

So cancelled all that stuff and took animal doxycycline on my own for six months until I hadnt noticed any further improvement for several weeks. Even that went from $20 a bottle to over $150 during this time period. For an antibiotic thats been on market for decades and sold cheap over counter in third world countries. Gotta love greed... NOT! So had to order it from Thailand. Its used in tropics as a cheap malaria preventative. You regularly take doxy and you wont get malaria.

Anyway I am in limbo now. Better than anytime past few years, but not healthy, and I tire very quickly. Even now, ironically I occasionally get few non-healing sores on my arms that then go away if I take doxy for couple weeks.

Have belonged to RMSF support group online. I am not the only person that didnt get a quick cure. It tends to be chronic and you get reoccurances though after that first is treated with doxy, you probably wont die from it, just live with symptoms rest of your life.

As to person mentioning tetracycline, doxycycline is just modern version from same family of antibiotic. Tetracycline was what they used early on. Now its rarely used for humans as it tends to stain teeth. Interestingly there is another malaria connection. Just before antibiotics were developed, there was some successful experimentation with quinine for RMSF. Quinine which was used by British in colonial era as malaria preventative.... thus the development of gin and tonic as easy way to get it down on regular basis. Just thought it interesting that both doxycycline and quinine are/were used as malaria preventative and also used against RMSF. Doubt its coincidence.

As to those suggesting jetting around the country or world for a lyme-literate doc wanting mega cash upfront. Its nice to be independently wealthy I guess or that you have gold plated insurance like the CEO's and politicians. Us unwashed rabble tend not to have this ability. We are stuck with local GP that is clueless. Especially when one lives alone and can barely walk across room. Driving long distances isnt going to happen even if one had money for such.

Tell you diseases like RMSF or Lyme scare me far more than current media frenzy over ebola. At least ebola gets one free quality care cause the rich and powerful are afraid of it and its currently the big focus of media frenzy. No health care provider or even local health dept cared if I died of RMSF unless they made a killing off the deal. Nobody was going to get RMSF from being around me unless same tick found both of us.
 

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... but is really frustrated w/ the mental stuff...
The brain fogs are the worst part. Especially when trying to make quick decisions. Like in dealing with medical care providers looking to maximize profit ahead of everything else.

Still have occasional bouts of the staggers and brain fog. Not fun at all. But still lot more functional than in the past few years. And best thing I do is stay away from people all I can.
 

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Discussion Starter #8
Wow guys! I was feeling truly alone in my anger and frustration w/ the medical care for this disease...Not so happy at all to find out this is actually the norm...We've done the antibiotics, the lifestyle changes, blah ,blah, blah... I was just wondering if anybody out there has found a way to live with it, and have some quality of life?
 

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I will give you some hope. I worked for elderly horse rancher for good number of years. He had daughter from first marriage out east that was nearing retirement. She got LYME. Luckily for her she also had good job and lot money socked away. It took her literally 10 years going doctor to doctor to finally find somebody that could help her. She apparently did finally get a cure or at least thought she did. I know, if even somebody fairly well off with good support system has this much trouble, most people probably arent going to ever get much past limbo where one just lives with and treats symptoms and lingers.

And on the RMSF support forum, there were those that had the fever, got hospitalized, got better, felt good for ten years, then wham, symptoms return. Just saying....

But think lot diseases like that. Once you are over the initial battle, your immune system has built up enough resistance you tend not to see it again. But if your immune system weakens.... you can get deja vu all over again, at least in a milder form. Chicken pox never really goes away, just hides in your body, then wham you get shingles out of blue, sometimes decades later. Or malaria is the one everybody heard about. Once you've had it, can get bouts over and over when your immune system hits a weak point.
 

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Discussion Starter #10
Thanks HermitJohn, We definitely don't fit in the "well off" category! You bring up an interesting point that there are other diseases that behave much like Lymes in the random relapse category and that they are also linked to your immune system. I just wish there was some research on the "Lyme brain" syndrome. I worked for 20 yrs caring for the elderly and a lot of his neurological symptoms are very similar to the early stages of dementia and Alzhiemers. Pretty scary stuff for a man in his early 40's.
 

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Our daughter is fighting lyme. She went thru all the same stuff, no one would diagnose it properly, let alone treat it properly.

She researched and became her own advocate. She got pushy. She finally found an infectious disease specialist who treats it and treats it aggressively.

It's a mess, not enough research, doctors who have no clue or doctors who go by the CDC guidelines, which are not thorough enough.

She was in a later stage of it before she got the diagnosis. She just now after over a full year, finished treatment and so it's still a waiting game as to whether or not she can function normally again. It's been a very scary year. Hers did go into the brain.
 

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Our daughter is fighting lyme. She went thru all the same stuff, no one would diagnose it properly, let alone treat it properly.

She researched and became her own advocate. She got pushy. She finally found an infectious disease specialist who treats it and treats it aggressively.

It's a mess, not enough research, doctors who have no clue or doctors who go by the CDC guidelines, which are not thorough enough.
Chronic Lyme sufferers make up a major proportion of the patients for my integrative health doctor. He's been able to help most of them with various strategies.

Homesteader is right, you have to educate yourself and become your own advocate. Don't expect the doctors to know everything, and don't accept everything they say as gospel. If I had listened to the first specialist I saw, I'd have been dead 18 months ago. Also, be willing to look outside the conventional medicine box. There are treatments that can help that aren't in the medical school textbooks.
 

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Homesteader hit the nail on the head. I have lesions on my brain due to lyme disease. The doctor tried to pass it off as MS, but I have no other MS symptoms. After doing some research I realized it is due to the chronic lyme disease. Brought the info to my doctor and he agreed.
 

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It is likely that most of you with chronic Lyme have already seen this documentary, but I thought I would share the link. I have not watched the sequel (didn't know it existed until a minute ago), but the original is available from youtube, I believe. I watched it a few years ago on PBS. As a scientist, it brings up some interesting ethical issues, but I think it probably has great value for someone suffering from a disease that is not widely recognized.

http://www.underourskin.com/#home-emergence

Theresa
 

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A friend of the family got malaria in the 1930s, I think. She had recurring bouts of it about once a year. She lived to a ripe old age, however. At the time, she was living in the mosquito zone of SC.

COWS
 

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I got lyme some years ago, had the deer tick, the "bull's-eye", the weeks of severe suffering afterward and now the chronic issues and can get no help from medical dr's, so I went to a holistic dr, didn't tell him one iota of myself and within minutes after running a test he said I had lyme. Of course I already knew that, but having a dr finally see it and want to help me, that was such a break through! He gave me some stuff to take for 3 months, and wow, I feel so much better! I do want to go get more, you're supposed to take it for a year I think, I simply ran out and have not gotten back to get more. But the length of time and dose may be different for everyone depending on the severity/how long you've had it, etc. It's called lym by Pure Herbs, LTD. I believe I paid a whopping $15.00 for a 3 month supply!!
 

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Discussion Starter #18
Just want to say Thanks everybody! for all the info. I am doing the research and looking at the info you shared. My husband is game for trying just about anything that might help at this point, so I really needed some common sense advice. You guys gave us some great avenues to explore and I wanted everybody to know how grateful we are!:thumb::thumb:
 

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I recently met two individuals who have Lyme. Both had similar and differing treatments. One has fairly successfully treated herbally. It may be in remission though. Apparently the bacteria doesn;t do well with oxygen or high temperature. One person is getting setup to soak in a 104 degree bath. Yeah the temp has to be raised gradually.

The other has been taking hyperbaric treatments.
 
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