I’m not new to the forum but, have just come back because I know when one of us needs an answer to a big question, you will receive it here as you all as the most thoughtful, kindest, and most knowledgeable group that I can go to to get support and to obtain an answer to this most greivence question that is haunting me:
“Is there anyone out there that has been in treatment 10+ years or, know of someone that has?”
I have had Lyme, Bart, and Babs., for 21years before I was diagnosed. I did have the EMS rash but is was in my buttocks area so of course I didn’t look at it. We were in Arkansas canoeing and sat in a wooded area, got a rash, and we all thought I had contracted Poison Ivy.
This is going on my 11th year In treatment and I cannot get a straight answer from my LLDD. I can say that from the beginning of treatment I am 60% better but my Cognitive Neuropathy, constant joint and muscle pain in arms, legs, knees, feet, and ankles is unrelenting. I have had blurred vision since I was diagnosed also.
All I get from my Doc when I ask the question is:
“We haven’t given up on you yet.”
I did search the forum when I was 7 years into treatment and only found evidence of Lymies with the longest time treated as 5 years. When do you meet the diagnoses or are put in the class of THE 10% THAT NEVER GET BETTER IN LATE STAGE LYME? I certainly have put myself there!
I look at the mound of meds, and right now the addition of Malorone as treatment for Babs for the 3rd time and just CANNOT do it anymore!!!! I’m getting somewhat less compliant with my treatment because I’m tired of it all.
posted
Everyone is unique. I would say that if you've been doing the same thing for years and it isn't helping, you might want to explore other treatment options. There are a lot of great Lyme-Literate holistic practitioners.
You mentioned going to a LLDD. I'm not sure what that stands for, but do you go to a LLMD? If not, I definitely recommend going to one. If you post in the Seeking A Doctor forum, people can recommend some in your area.
There is definitely hope, it just takes time. I hope you feel better soon! Posts: 241 | From New Jersey | Registered: Jan 2015
| IP: Logged |
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
So very sorry TickTock4422.
Quote from world renowned LLMD Dr H. ;
"Don't give up. We are finding answers. Please hold onto hope. You can get better."
Dr H. got his wife into remission, she is 1 year with no meds. Scroll down for his latest interview about his new protocol.
Sending healing wishes.
Posts: 2977 | From Florida | Registered: Nov 2016
| IP: Logged |
kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
TickTock, I am so very sorry for having to be in active treatment for so long.
Have you had your home and/or work checked for mold. That is why some people can't get better.
I do know one person in my local area who treated for over 10 years. I'm not sure what she does now, but I did see where she got married so I am hopeful that she is now off of treatment.
I hope that you can get your LLMD to look at Dr. H's new Dapsone protocol. It seems to be the answer so many have been looking for.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
| IP: Logged |
posted
I'd say keep trying new stuff. You never know when something's going to help.
I have two suggestions - for joint pain, I take capsules of turmeric. I get the powder at the health food and dip 00-size capsules into it, and take one in the am and pm. Takes down pain fairly quickly for me.
The other suggestion is for the blurred vision you mentioned. I drink mangosteen juice everyday and that stops all Lyme eye symptoms for me. I get the juice at the health food store. Can also be purchased online.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
Thank you all for the great suggestions and support! My LLMD in Washington DC is always switching my antibiotics and protocol around every 3 months or so.
The thing that I have not been compliant with is perhaps the most important treatment and That is Lactoferrin and Xylitol for the biofilm. As I said I am so tired of the entire treatment regimen! I know how important it is. This is where I have to Improve on right now,
I know I am not helping myself, only hurting myself, but today right now I don’t have any more courage to continue with the harsh regimen with all the PILLS, POWDERS, DROPS, etc.
I am constantly worried about my Liver and Kidneys. I feel it’s just a matter of time I will get Cirrhosis and subsquent liver failure. I am always hearing from other MD’s how shocked they are about how much medications I take.
posted
May I say that my 2 suggestions are natural ones, not pharmaceuticals. I think turmeric has a lot of good health effects in the body, if you check out the research, so I don't think it can hurt you. I really get joint pain relief from it such that I don't have to take an antibiotic.
Plus the mangosteen juice for my eyes. The juice is a very healthy anti-inflammatory juice - it neutralizes free radicals that are causing the inflammation in us.
So I encourage you to try stuff when you feel up to it.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
quote:Originally posted by TickTock4422: Hey Guys,
I’m not new to the forum but, have just come back because I know when one of us needs an answer to a big question, you will receive it here as you all as the most thoughtful, kindest, and most knowledgeable group that I can go to to get support and to obtain an answer to this most greivence question that is haunting me:
“Is there anyone out there that has been in treatment 10+ years or, know of someone that has?”
I have had Lyme, Bart, and Babs., for 21years before I was diagnosed. I did have the EMS rash but is was in my buttocks area so of course I didn’t look at it. We were in Arkansas canoeing and sat in a wooded area, got a rash, and we all thought I had contracted Poison Ivy.
This is going on my 11th year In treatment and I cannot get a straight answer from my LLDD.
I guess the unanswerable question is, how do you tell if it’s active infection, or just immune damage from the past infections?
10 years is a long time...I have walked away from LLMD treatments at 3 years. One, Cost. There was always some new expensive treatment to try, and I felt taken advantage of and bankrupted.
Two? I believe that long term antibiotics can cause A LOT of damage that we haven’t really figured out yet. For many of us, it was the best thing at the time. But I can say for me it was super damaging to my system.
Have you considered looking into Bee Sting Therapy? A lot of people who have been sick a long time are having success with it. I’ve been doing it for 6 months, I’ve already had Two major herxes, and it’s been bringing my babesia symptoms acute. Dr Eva Sapi recently did a in vitro study showing bee venom was more effective than antibiotics.
For information on BVT see Ellie Lobel’s article, “How a Bee Sting saved my life”
If you have FB you can search “Bee venom therapy for Lyme disease” and “Healing Lyme with Bee Venom” groups and follow along to learn more.
I have given up on herbals, antibiotics, and crazy expensive treatments. I spend about $80 a month on bees and supplies, plus a bit more for supplements. I don’t need to pay an expensive LLMD.
Posts: 133 | From North Shore | Registered: Sep 2015
| IP: Logged |
Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
I'm with Neko and Robin: no way your body will heal after 10 years of ANTIBIOTICS, if it already hadn't.
How can MDs and long term antibiotic users NEVER READ BUHNER's books?!?
MDs understand little about bacteria. They have anyway little time to study new materials.
There comes a high IQ herbalist who decides to read THOUSANDS of papers and understand bacterial ecology, resistance, treatments, evolution...
His view is clear as transparent water:
antibiotics are too dumb to treat ANY stealth infection.
If they don't work after a few WEEKS, he recommends to change to more sophisticated approaches, because bacteria are extremely adaptable, they evolve very fast, and teach each other how to survive.
With single bullet drugs, that's easy task for them.
No single MD had spent the time Buhner had on old and new papers.
And you guys still think man-made single bullet drugs will do the job?!
I really don't get it.
If he hadn't written the books, yes, but after all these years , you guys still stick to dumb drugs that basically weaken your immune system, charge your detox organs that are already in red alarm (liver / kidneys)?
Open any of the last books of Buhner, read the introduction.
After a couple of weeks on antibiotics, possibly a couple of months, well, if you are still sick, there is no other way out than to move to more intelligent approaches and try to rebuild the immune system.
We can't have our health back by overcharging the liver (that is an immune organ, that fights pathogens too)
+ by destroying gut bacteria, where great part of the immune system sits
+ and not only gut bacteria, but the whole body is filled with friendly bacteria, the skin, even the brain, and antibiotics kill them too (not all, fortunately).
Sometimes, the short term drug approach works for some cases.
But 10 years, no.
When Buhner says he thinks antibiotics may help for lyme, he means maximum a couple of weeks. Not even months!
He's not god, but if you read the books well, he's got a good point there.
How can a doctor treating lyme NOT be familiar with Buhner's books?
Sorry for the tone. I don't like doctors who are stuck on one-approach only, and let patients suffer for DECADES.
Be your own doctor. I'm sure we are much more flexible and creative!
Posts: 6199 | From Brussels | Registered: Oct 2007
| IP: Logged |
Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
7+ years of best of the best treatment & I only got worst.
Check this out: "For the first time, scientists have been able to study the parasite #Babesia duncani in human red blood cells. So far, they have found:
1.) The parasite can replicate rapidly, more than doubling in less than 24 hours. 2.) 4 drugs used to treat the disease are not "optimal therapies". The parasite has low susceptibility to these treatments.
To study the parasites, researchers transferred Babesia duncani from hamster red blood cells to human red blood cells cultured in vitro. This will allow scientists to study the cells biology and development over time."
posted
Do you know what the 4 drugs are? I found atovaquone is the only one of 4 effective in the below article but they dont mention what the other 3 are.
Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
Mepron, Malarone, & Cryptolepsis are the ones I know of. Doc says Bactrim treats it too, but who knows what to believe anymore. I never had a herx with any of them.
After months of Mepron I only felt dehydrated & weaker.
Posts: 2087 | From NY | Registered: Oct 2011
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I was bitten in 2006 and diagnosed in Feb.2008. I treated until late 2014. Like some of you, I was just tired of it.
Now I realize I was not completely well because I had daily headaches and the soles of my feet hurt in the AM. Over time I developed extreme fatigue where I felt like I would faint. I was going through. a lot of external stress and thought that was why I was so anxious and depressed.
About 4 months ago, a doctor gave me Bactrim for a UTI and miraculously my daily headaches were gone. When I quit the Bactrim the headaches came right back. I didn't make the connection until a month later when I had another UTI, got Bactrim, and the headaches were gone again - coming back as soon as I quit.
Ah--Bartonella! I am back of Bactrim and back on the strict no sugar diet. The headaches went away in one day. My feet feel a little better.
The funny thing is that I am sleeping extremely well - knock on wood - because bartonella caused me insomnia before. I hope I do not also have a relapse of Babesia.
I treated Babesia D. in late 2010 - Mepron didn't work at all. It was the combination of Malarone with rounds of Coartem every three weeks that knocked it out.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
posted
I got off the drugs after 5 years and felt better immediately. I went with the Buhner herbal protocols and have gotten rid of most of the infections. Here is a list of alternatives and their success rate.
posted
I was sick for over 30 years, disabled for the last 6 from another tick bite. I did 2 years of abx and saw I was just going to stay at that point indefinitely because if I cut back or lessened my meds I'd quickly get worse again.
I started looking for alternatives and got better.
I think all of us have a different combination of things happening in our bodies, all of which need to be addressed. Taking endless abx does help symptoms, it did for me, but doesn't get rid of it because of all the other things being conducive to the infection still being there.
I changed protocols to all natural because I figured I could always go back to meds and be where I was before.
Also, are you exercising? Dr. B's guidelines say it is not optional. You cannot get better without movement. At whatever level you can handle. I'm not saying to go out and be an athlete.
I hope you find answers soon.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
18 Reasons Why Lyme Treatments Fail by Dr S from Florida.
"The age of the ten-year patient is over. It should not be tolerated. Traditional and alternative Lyme specialists need to catch up with emerging new medicines."
posted
Look into thiamine deficiency. I am like you where I cant seem to get "there" no matter what. Abx drag me down if I take them more than 1 week a month.
posted
I think (I could be wrong because I dont totally understand this stuff) but B vitamins are produced in the gut. We have destroyed our gut with abx.
posted
I haven't been here for a long time, and this is such a good question.
The best advice I can give is to listen to yourself. It sounds like you are emotionally burned out and just need a break. Been there many times myself. Have you considered telling your doc you are burned out, and just need a simplified protocol, just for a little while?
I have been on abx/antimalarials both drugs and herbs for 12 years. I have learned what drugs/herbs sustain me, so when I get burned out, I go onto a simplified protocol for 6 weeks.
I too, worry about my liver and kidneys, so I ask my LLMD to do a basic CBC and CMP blood work every 2 weeks
Ironically, the only time my liver enzymes go up, and its just barely up, is when I back down from drugs
I know people who are 90% better, but can't stop the drugs or they relapse (herbs don't maintain them unfortunately). I know others who switched over to herbs and are doing great.
Anytime I back down from drugs, I end up with a new serious symptom that I can't get rid of. So overtime I've gotten worse because I stopped drugs.
So, in my case, as crazy as it sounds, my body does much better on constant drugs. And I don't just mean symptoms, my bloodwork is normal on drugs.
If I get overwhelmed with a complex protocol, then I've learned its not right for me. My emotions are also part of my body speaking out, and if I feel a ton of resistance, thats my body telling me "this protocol is not healing".
But, that's just me.
Try, try, try, and pay attention to your body/mind. just do your best. And go easy on yourself (you are a sick person after all . So what if sometimes you don't follow the protocol to the letter. Its the balance that matters
Posts: 5 | From West US | Registered: Mar 2016
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic