posted
My symptoms began 25 years ago. 4 years ago new symptoms appeared and within weeks i had symptoms of ALS, Parkinson's and MS, and a multitude of other debilitating symptoms. Was diagnosed with Lyme and confections 1 1/2 years ago. Can't seem to find a good treatment plan.
I need to hear from people who have experienced healing from chronic neurological Lyme and how you were healed.
If anyone has been healed from chronic neurological Lyme disease and isn't selling something, would you please share what treatments did and did not work for you.
Thank you. Extremely discouraged
-------------------- Ticktoff Posts: 3 | From NH | Registered: May 2018
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Welcome to Lymenet Tickoff
Are you being treated by a LLMD ? Do you wish to get one or switch to a different one ? Let us know, ok ?
There are many who have healed from chronic Neuro Lyme. You will find them posted under Sucess stories here;
posted
I will publish the Goode Protocol soon. We got tremendous results based on the latest science.
Posts: 360 | From Massachusetts | Registered: Dec 2012
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posted
I have been treated by a naturopath who specializes in Lyme in Maine. I have been scared away from antibiotics from my research on chronic neuro Lyme. Things began to improve last September but then downhill in October and since. I can't sleep. My head feels horrible. I don't know of any success stories to know where to turn.
-------------------- Ticktoff Posts: 3 | From NH | Registered: May 2018
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
I still run away from antibiotics...
I don't know your story, but if I had to start on a place, I would try liposomal vit C first. It's amazing stuff, inexpensive, not hard to do.
It goes directly to fat soluble things such as cell membranes, brain, joints, tissues...
i'm still new on the thing, but it does feel amazingly exciting!!!
I've been healed from arthritis, neuro-lyme, encephalitis, babesia, bart, myco, you name it.
I could barely know where to go, my brain was cooked, memory next to zero (what am doing here now? Where is the way back home?)
I did not take liposomal vit C back then as no one was talking about that. I did loads of stuff, with the help of experts and also alone.
Buhner is a good start, I think. But before going on it. I think lipo C is a great place to start. Cheap, a super antioxidant, goes to the brain, nerves, joints, etc, cleans and helps the immune system, gives you some energy...
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
My story is similar. I had lyme for over 30 years, then it got worse after another tick bite and I couldn't get out of bed.
I tried abx, but they just kept me in cycle. If I was on heavy dosages, I felt good for a few hours in the afternoons. But I didn't get real healing from them.
I did all kinds of things. treated heavy metals, treated parasites, worked on my gut, exercise (critical!!), etc. For the Lyme itself, photon treatment. There are threads here on photon treatment. I used the Bionic 880 and Brussels used the PE1. Both do the same thing.
I agree with the vitamin C. Liposomal C and glutathione weren't popular (not sure if they were even available) when I was sick.
CBD oil is great for inflammation, it also wasn't available when I was sick.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I've only had Lyme for 9 years... But I've had some pretty significant neurological issues and probably Lyme related brain damage. I say probably because I don't know for sure what caused it, but it was definitely not head trauma-related.
But I have gotten rid a lot of my neurological issues, except that I still have fatigue, insomnia, and I can't drive.
For me I just had to keep switching and switching herbs, and take large doses of some of them. I was on antibiotics for a few months, and It did seem to help my neurological issues somewhat. I also did cold laser therapy which also seemed to help. Being on a good diet helped too.
Which herbs are you doing? I think there must be an herb that causes insomnia I never had insomnia before I started herbs. Now I'm taking a whole bunch and I don't know which one it is. I used to be really tired and go to bed early, but now when I get in bed I always think of something I want to do and I get up again.
-------------------- chronic Lyme/Bartonella
Inside every sick person is a well person waiting to be freed Posts: 232 | From new england | Registered: Nov 2017
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posted
I’m glad to hear people were healed using just herbs. They did help a little bit for me, I’m sure.
I was on the Cowden/Buhner protocol and also used oral antibiotics. Then towards the end of treatment, 6 weeks of IV (all kinds of supplements, a clean diet, etc. throughout the several years of treatment).
For me, I didn’t turn a corner until the IV. Within about six months I was 80% better. And I had a severe neurological case, myoclonus and encephalopathy.
I’ve always been the type of person who was against taking antibiotics, definitely a much more holistic oriented person, so I wouldn’t discourage the herbal route,
I just want to point out that it doesn’t work for everyone and that I believe the IV saved my life.
Posts: 366 | From MA | Registered: Apr 2006
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Standard Antibiotics: ---------------------- Minocycline because it penetrates blood brain barrier. Roxithromycin penetrates blood brain barrier, must be ordered overseas
---------------- IV antibiotics work great because it crosses the blood brain barrier because of penetration, if you can afford it and insurance will pay.
New Heavy Duty Antibiotics like Dr. H are starting to use for persister cells: ------------- Dapsone Pyrazinamide
Disulfiram - New drug that I tried, helped me a lot, supposed to wake up dormant cells, penetrate the blood brain barrier, and kill persister cells
You must use biofilm disolvers like Stevia(SweetLeaf Whole Leaf Stevia Concentrate) and others biofilm disolvers to get to the bacteria, also use specific persister cell killers like Dapsone, Pyrazinamide, Disulfiram or others.
New herb found to kill persister cells is oregano, but again, going to be hard to get that to pass the blood brain barrier with oregano, which a lot of people forget. You'll have a hard time with penetration and crossing the blood brain barrier with any herbal remedies.
If your lyme infection has gone chronic, it's going to be hard reaching remission on just the standard antibiotic regimens LLMDs are using today.
Especially considering the borrelia bacteria has evolved from 30 years ago since it's first find in Lyme Conneticut, the standard antibiotics that helped patients reach remission back then are not working as effectively today, prolly due to biofilms, perister cells, coinfections and downright evolution.
Standard antbiotics will get you about 60-70%, but I hate to say it, if you don't use IVs or something like a strong persister cell killer, it'll be hard to get past that 70% plateu... This is why the infection keeps coming back, dormant persister cells and biofilms.
Oral Dapsone and Pyrazinamide helped me out tremendously, but have to take liver support and probiotics to replenish good bacteria and keep organs healthy, I think Dr. H did say Dapsone doesn't kill off good bacteria in your gut.
I'd follow Dr. H on Facebook, read his books, watch his "latest" videos on YouTube. Forums can be a good resource for information, but a lot of people are repeating the same stuff from 10-20 years ago.
Evolve and adapt, just as the borrelia bacteria has, go with the best LLMDs and latest breakthroughs in treatments, LLMDs aren't created equally just as anything thing in life, believe me there are new breakthroughs regardless of what anyone says on this board!
I'd join all the major Lyme forums on the internet too, don't count on just one forum for information, as some are overun and bias on certain treatments than others.
You want a lot of information and different view points to help you make the decision yourself rather than someone else. Remember knowledge is power!
Honestly, with the amount of seminars on YouTube these days from Dr. H and other great LLMDs, I find that to be more resourceful than forums these days. Trust what the top LLMDs are saying, not forum members, even take what I'm saying with a grain of salt.
Read up on these drugs yourself or have someone else, if you can't, learn about biofilms and persister cells, blood brain barrier and see what works for neurological lyme.
P.S. When I tried Dapsone for the first time, it felt like a dark cloud was lifted off top my head and I can think better. Why? Well because it's targeting persister cells and crossing the brain barrier.
Good luck...
(breaking up the post for easier reading for many here)
quote:Originally posted by Ticktoff: How many years did you have Lyme and coinfections before you began treatment?
My LLMD believed it to be more than 20 years based on testing. Knowing the tick bites occured in the early 70s, I know it was about 30 years. I got worse with another tick bite in 2003, finally diagnosed in 2006.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I have mostly all neuro sx from my tick diseases.
after I ran out of money I did herbal /homeopathic tx and had great strides in health getting better. but, now I am experienceing more neuro sx and Im a bit worried, but not sure what end they are coming from,
such as- my B12 issues, ? or new infection? or old infection not treated enough? etc, etc...
but the most that helped me before was similar to the Cowden protocol.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
My wife’s neurological symptoms were the first to go. I treated her with a GB-4000 Rife device. The other symptoms took much longer such as joint pain.
She also had Babesia, Bartonella which are gone now. She still has lyme as far as I can tell. But she has only slight joint pain on rare occasions and no other symptoms. Never had any more mental symptoms after the initial few months of treatment.
Good luck.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Mild hyperbaric oxygen treatment with a home chamber cured me of 8 years (5 years homebound)of severe Neuro-Lyme, Babesia, & Bartonella.
I encourage you to read the entire Mild Hyperbaric thread on this forum. There is hope!
Posts: 1880 | From Earth | Registered: Jul 2013
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quote:Originally posted by Ticktoff: My symptoms began 25 years ago. 4 years ago new symptoms appeared and within weeks i had symptoms of ALS, Parkinson's and MS, and a multitude of other debilitating symptoms. Was diagnosed with Lyme and confections 1 1/2 years ago. Can't seem to find a good treatment plan.
I need to hear from people who have experienced healing from chronic neurological Lyme and how you were healed.
I am just seeing your post so dont know how things are today but would love to have an update. I am in NH too and have Neurological Lyme, my balance/walking are my main symptom and have been treating for a year. If anyone has been healed from chronic neurological Lyme disease and isn't selling something, would you please share what treatments did and did not work for you.
posted
I believe I got bit in 1970. I was pulling 40-60 ticks off the dog every day. I lost energy gradually until 1978 when I got really sick one day, and never got better. I have tried many protocols, and know they have worked for others.
I found an LLMD about 2006, and feel antibiotics saved my life. After years of switching antibiotics every 6 months, I realized I had plateaued, especially with low energy and insomnia.
My husband and I decided to switch to the Doug Coil, with my LLMD's blessing. It's been about 6 months, and I can tell my energy level is up a notch, there's less pain, I'm sleeping better most nights, and the symptoms for Babesia, Bartonella and Lyme have just about disappeared.
There are a lot of options. Don't give up.
Posts: 552 | From New Mexico, USA | Registered: May 2007
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posted
Hi everyone, my mom was active on here a number of years back not sure if any of you remember her (I'm writing this from her account mine is Elleizrae) About 10 years after she was diagnosed I was also diagnosed after a downward spiral with Lyme disease, Babesiosis and Bartonella.
All our family vacations when I was young were always out camping in the woods in Florida. I was diagnosed 8 years ago with both Lyme disease and mental health challenges.
I currently work in the Mental health field but my background is in Health Science. I actually had Dr. Kerry Clark as my Epidemiology professor in school, haven't had a chance to check yet if there are any threads on here about Dr. Kerry,
he is spreading a lot of awareness and has a lot of wisdom on Lyme disease in Florida and was one of the first to confirm that it was being found in the South.
I know back when my mom was diagnosed in 2001, the doctors all said that you couldn't get Lyme disease here and was one of the factors that made it much more difficult for her to find the correct diagnosis,
she was only able to find out about LLMD's after getting on Lymenet and receiving an outpouring of support from people who had experienced the exact same thing.
So I Just wanted to introduce myself and mention that one thing that really helped me with regaining some of my cognitive abilities was incorporating a 15 minutes a day session of brain training into my daily routine (you can find apps in the Google Play store or Apple equivalent).
Before trying the brain training apps I was at a place where I didn't feel like I could trust my own mind and my memory was gone, at one point in school before things got really bad...
I remember being up late and typing LITERALLY one letter at a time from my notebook onto the computer and not being able retain anything more than that!
So for me the confidence of being able to see different areas of my mental ability improving (Spacial reasoning, memory, flexibility, etc.) really helped with regaining some of the self confidence I had lost in myself.
I'm still new to meditation but have already found a lot of mental health benefits along with spiritual from it. Guided meditations are a great start for anyone venturing into new territory there!
I have found some supplements that have helped (btw I am not in any way affiliated with any Herbal or Pharmaceutical companies and don't work for any of the technology companies that have developed brain training apps!) Just sharing what has worked for me so far. Bacopa is a natural Nootropic and is a good supplement for memory.
I've been able to get through some of the extreme fatigue taking a product called "APT Energy". You have to have a doctor's code to purchase it but it works!
If you're struggling to find a low intensity exercise to get some strength up and help you stay out of bed or off the sofa, I would recommend Ti Chi or looking up on Youtube "bedtime yoga" both are great options to get back on track with building your strength back up.
I'm so grateful for all of you guys on here and would love to hear what all has worked for you guys! -elleizrae
(breaking up the post for easier reading for many here)
the normal ones for lyme Knotweed Cats claw Andrographis
plus specific to neurological lyme Gou Teng (Uncaria rhynchophylla) also add Kudzu root if headaches / pain etc or other signs of inflammation in the CNS are involved
i have had some benefit from the above - but it takes a while to get the effect as there tend to be long-standing inflammatory reactions that take a while to break down.
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