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» LymeNet Flash » Questions and Discussion » Medical Questions » 17 years Latent Lyme- Stop treatment?

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Author Topic: 17 years Latent Lyme- Stop treatment?
TickTock4422
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Hi everyone,

I am so tired of it all. Disgusted. I look at my hand every day with the 23 pills I take for Chronic Lyme plus 7 other pills for my other multiple medical problems for a grand total of 30 pills twice daily. Thinking hard and feeling in my heart that, “ [confused]

I CAN’T do this anymore. It’s time to STOP!”

I have posted here on this forum when I was 10 years into treatment asking for anyone to respond that has been in treatment for Chronic Lyme for that length of time. I only had one response. Only 1! I felt I needed to find anyone that has had Chronic Lyme for that time or longer.

I was diagnosed in 2007 with Chronic Lyme and Co-infections of Babesia, Bart, and Mycoplasma. I was bitten in 1986 but did not begin treatment until 2007. Long length of time for dissemination! I have been in treatment for 17 YEARS now.

My Lyme doc has hundreds of patients. After questioning him yearly for the last 4 years whether I am in “Latent Lyme,” he finally “admitted”, that I am one of 4 patients he has that are his worse patients and have not responded. So, he could never say the words to me that I am now in” Latent Lyme.” Of course in my heart and mind I know I am one of the 10% of Lyme persons that never get better and achieving remission is never likely to be achieved.

So, after 17 yrs of taking multiple, multiple antibiotics that were tried, altered, adjusted, and changed, along with a long list of supplements, and for the last 2 years, herbal meds, all of these taken for 17 years, have NEVER helped me achieve any remission. The regimen of heavy duty drugs continues… I did the Dapsone protocol twice but didn’t fully complete the protocol. Both times I did 3 of 4 months of the protocol.

But, as of today, I am feeling the best I’ve ever felt in 17 years! Really minimal fatigue and pain. But, my cognitive is horrible! Severe neurological encephalopathy.

I recently had another Wesern Blot and it was NEGATIVE for Lyme. WHAT DOES THIS MEAN? The Bartonella though was POSITIVE. Do I still have Lyme disease despite a negative test? Do I continue some form of treatment for the Bart? My Lyme MD says yes I do still have Lyme because if I have Bart, I have Lyme. Is this a true statement? He says I have to continue treatment for Bart for another year or so. My Doc also has Lyme. HE HAS MEMORY DEFICITS! I worry that he will properly manage my therapy adequately. He is one state away and with my medical problems I can’t travel further than that.

So, my big question I am greatly struggling with is to make a decision that will impact the remainder of my life. I’m 63 years old!

“At this point, after all this time of treatment without a remission, isn’t it time to discontinue treatment?”

There is no way of knowing if I will worsen and I would have to resume treatment at some point as the organism multiple organism multiplies, without treatment, how long will it take for symptoms to redevelop and I return to a debilitative state?

So, I need some advice. Is stopping treatment a good choice? I want to quit so very much! Would I relapse and resume the crippling condition I first presented with in 2007? I don’t want that!

Warmest regards

Posts: 57 | From La. | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
hiker53
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Ticktock—I am sorry to hear you have been in treatment so long without symptom relief.

It is possible to have Bartonella without Lyme. Perhaps you have conquered Lyme or put in it “remission.”

Which lab did your Western blot test? Igenex is still probably the best lab for tick borne disease testing.

You said that today you felt good. Are you still on that mega drug regimen today?

Have you tried the nontypical treatments such as HBot (message Phoiph and read through that thread) or energy healing?

I first got Lyme in 2003. I still have some symptoms but am unsure if the bacteria is still there or if I just have some permanent neurological damage and permanent Eustachian tube damage.

I stopped all drug treatment and herb treatment years ago and went to a Brennan energy healer which made a huge difference. I am much better than when I was on antibiotics and herbs.

But I have never had the cognitive issues that so often come with tick borne diseases. And I don’t have bartonella.

I am not sure anyone can tell you what to do but I would suggest:
1. Get a second opinion from a different LLMD.
2. Contact Phoiph on this site about hyperbaric chamber work.
3. Contact Catgirl2 on his site about energy healing.

Wishing you the best and praying for you.

--------------------
Hiker53

"God is light. In Him there is no
darkness." 1John 1:5

Posts: 8881 | From Illinois | Registered: Aug 2004  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
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So sorry TickTock4422

I’ve been sick over 10 years, 3 years undiagnosed, so here’s my take.

There is no cure for disseminated Borrelia Infection.
The best we can hope for is remission.
Remission is a hard fought battle and unfortunately I believe up to 25% of infected patients will not get to experience it.

I will not experience it because I have primary immune disorder.
I have experienced a really good quality of life many many times.
And I run with it while it lasts. I always have symptoms, never go away.

Currently there is no test to determine if you have Lyme or not have Lyme after treatments with certainty. LLMD’s base treatments on Symptomatology.

If you have symptoms, they will not go away without some sort of treatment. And yes, it will get worse. You will know because you have been down that road before.

As far as Bart, do you have dogs or especially cats?
Animals can infect humans with Bart. And there is research suggesting insects can also infect humans. Maybe Bart is your first priority.

As far as your age, Quality of Life is what matters.
You deserve a life well-lived!

I ran across a post with METALLIC BLUE and saved it.
He was meticulously litterate in all his treatment protocols. I wish I knew how things turned out for him but he hasn’t been on LymeNet in years.

https://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=086248;p=0

Good luck on what ever you decide.
Hopefully more suggestions will be offered for you. 💚

P.S. Lyme Diagnostic Guide by Dr Burrascano
https://www.ilads.org/wp-content/uploads/2020/08/BurrGuide200810.pdf

Posts: 2977 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
daisys
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I sure can relate to you. I was bit by a tick in 1970 and went undiagnosed for about 30 years. I'm over 70.

I've also been diagnosed with CFS/FM and Fibromyalgia. I've been told that I will always need to be in treatment.

For many years I was under the care of LLMDs. If there was a good one in my area, I would continue to go for treatment.

Taking mountains of pills multiple times a day is sometimes overwhelming. I try to think of them with gratitude. They do make a difference.

Some things that have helped me:

Diet makes a huge difference. Elimination diets have been key for finding which foods I need to avoid.

Starting with a rife machine years ago has made a big difference for me. Others report good results with other alternative treatments.

Getting good sleep has been a ongoing challenge, but makes a clear difference.

A good herbal protocol has been gradually strengthening my system.

It's especially important to maximize health when getting older. That adds its own issues to focus on.

I'd hate to think of the misery I'd be in if I gave up the fight to keep what state of health I have now.

Please hang in there. You don't know how quickly your condition could worsen, and how difficult it might be to recover to the place you are in now.

Minimal fatigue and pain are to be treasured. Keep working to gain other benefits. It's worth it.

Posts: 552 | From New Mexico, USA | Registered: May 2007  |  IP: Logged | Report this post to a Moderator
kgg
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Sorry for the delay in responding. I am just seeing this post.

I hear you. My son has been a non responder to Lyme treatment. We spent thousands upon thousands on treatment that always made him worse, not better. In hindsight I believe it has been autoimmune this whole time.

I would treat and get better but then relapse.

The only thing that consistently helped me was mild hyperbaric oxygen treatment. The reason? Because it does not chase the bugs. It does not matter which pathogen you are treating. It modifies the immune system and decreases inflammation among many other beneficial things.

Brain fog typically is one of the first symptoms people report improve.

There is a thread below this one that has been going for 10 years. Yes, it is long. Many don't post there anymore. But there is valuable info on that thread.

I for one, improved enough to have a cut flower farm for three years. From bedridden to farming! But I stopped diving during that time. Bad decision. So my autoimmune symptoms got worse. So I am back diving. And feel better every day.

Please consider mHBOT for your symptoms. If you have questions about it, ask away.

Posts: 1685 | From Maine | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
TickTock4422
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Hi Hiker53,

Sorry so late in answering your post. Thank you for responding.

I had both my Western Blots at IGenex.

Yes, I am still taking a heavy antibiotic regimen, other Co-infection drugs, and several herbal remedies that I began for the first time 2 years ago.

I changed physicians several times until I found the one I have seen for 12 yrs. So, I’ve had exposure to different methods of treatment along the way.

I am disabled and when traveling became impossible, 2yrs ago I was forced to find another LLMD closer to my home state. This was going to be important as would become my SECOND opinion.

But despite the amount of research I did to find an LLMD that fit my expectations, it has just not been an ideal situation and I have not been secure or satisfied. With these reservations and my dilemma about whether to stop treatment, I would like another LLMD opinion, but my husband refuses to change physicians again for another opinion at the least. I can’t blame him but I really feel sure I should.

As an RN, I am familiar with the many benefits of HBot therapy for so many illnesses especially for wound healing and Diabetes. I have read that it is helpful with cases of Lyme.

What is the length of time is it used to treat Lyme? I will not be able to afford the therapy unless insurance will cover and I will have to look into it. What length of time is it suggested to be used for Lyme?

I will have to do some research on energy healing.

What made you make the decision to stop all drug treatment? I’d be interested in your reasoning since this is my dilemma.

It’s amazing you never developed any cognitive issues. It sucks! My Neuroencephalopathy is excessive and severe. Much of my recall and some short term memory is less than 5 seconds in timeframe.

Since a certain percentage of Alzheimer cases have been proven to be caused by Lyme, and my mother died from End-stage Alzheimer’s, this severe memory issue greatly worries and concerns me.

Even though I only completed 3/4’s of the Dapsone protocol both times, it must have been effective and had a positive outcome because many of my symptoms have immensely improved and I feel so darn good! It is just a harsh protocol to tolerate.

The present treatment plan for me is to repeat the revised Dapsone Protocol. But, the protocol has not had success with longterm remission or full remission outcomes if BART is positive and has not been fully treated first. So, I will fully treat the BART then dive back into the protocol.

It’s so fantastic and I’m super glad for you that you feel better!! Keep on keeping on!

Thank you for the great suggestions! Much appreciated! I will definitely consider the alternative possibilities.
(((Hugs)))❤️🙏❤️🙏❤️🙏❤️

God Bless!

Ticktock

Posts: 57 | From La. | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
hiker53
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Ticktock, I am certainly not 100% but better is better!

I can’t answer your questions about HBot. Message Phoiph on this site for that. Phoiph is very helpful. There is also a long thread about it on this site.

I have a torn eardrum and have been told not to do Hbot because of that and patulous Eustachian tubes.

I decided to quit antibiotics after a year of them. I went from 117 pounds down to 85 pounds. The antibiotics played havoc with my digestive system. Even the IV antibiotics made me lose my appetite. Friends said I looked about ready to die.

When the picc line broke, I took it as a sign that my days of antibiotics were over.

I had to take time off from my teaching job after that year.

Then I regained my weight and strength and went back to my job and found energy healing (and bionic treatment in Germany).

I had a great Brennan energy healer. Sadly she passed away a few years ago and I have regressed a bit. I am currently trying Eminus Mirus or EM.

I do find that exercise helps me with balance and strength. And helps my sanity.

I am praying you find what works for you. 🙏

--------------------
Hiker53

"God is light. In Him there is no
darkness." 1John 1:5

Posts: 8881 | From Illinois | Registered: Aug 2004  |  IP: Logged | Report this post to a Moderator
TickTock4422
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Hi Bartenderbonnie,

Sorry for such a late response.

I’m so sorry to hear of your situation. I appreciate your take on my situation and thank you very much for the information, suggestions, and support.

I will certainly not take for granted this time I am feeling so well and I am aware I will have times I will worsen. I just hope I get to experience times of a good quality of life many times just like you. It’s all I can hope for. I continue to pray daily.

Take care and God Bless! (((Hugs))) ❤️🙏❤️🙏❤️

Ticktock

Posts: 57 | From La. | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
TickTock4422
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Hi Daisys,

Sorry for the late response.

I can empathize with your situation from reading your post. You have struggled a great deal and I can see how much you have suffered.

Like me, it was such a long time before you were diagnosed so you had unfortunate, disseminated illness plus you have had to endure additional, multiple illnesses making achievement of remission that much more difficult.

The mounds of pills is very familiar. I have to confess I am very glad to hear from someone in such close kinship with my own situation.

What experience does your present physician have with Lyme since he/she is not an LLMD? Are you totally comfortable with him/her?

It sounds to me you have a great outlook, found some peace, and a way to maintain positivity through all you have suffered through. I admire that and am thrilled to hear this from someone suffering as long as I have.

Everyone has provided great information and suggestions. One of the most helpful responses that really hit home to me in response to my dilemma about whether or not it’s time to stop treatment, was this one sentence you wrote (I skipped a few words):

“You don’t know how difficult it might be to recover to the place you are in now.”

This has really made me think about this possibility. I don’t want to find I am unable to recover back to this present state of well-being, short-lived or not.

I do not eat well but my sleep has finally improved. What Herbal treatment do you follow?

I hope things continue to go well for you. Keep your present state of mind as you well know this is the most important factor in fighting and overcoming illness, especially any immune system disorder.

Take care and God Bless,
(((Hugs))) ❤️🙏❤️🙏❤️

Ticktock

Posts: 57 | From La. | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
TickTock4422
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Hi Kgg,

I’m so sorry to hear about your child and his lack of response to treatment. I can only imagine the suffering and persistent disappointment you both have had to endure.

It must be pure hell for you to suffer with Lyme yourself, and deal with the difficulties of raising and taking care of your child with Lyme.

My brain fog could use much improvement as I wrote in a post above, and I realize HBot would be so helpful. But, again, if insurance doesn’t help defray costs, I will not be able to afford it. I will look into it.

I am thrilled you have improved to the point you were able to open your flower farm!! Good for you!! That is so wonderful!! 😬

Keep on keeping on!

Thank you and God Bless!
(((Hugs))) ❤️🙏❤️🙏❤️

Ticktock

Posts: 57 | From La. | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
kgg
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TickTock4422, Thank you for your kind comments. I am a retired RN. I had to give up nursing when the Hep B series was required. Brain fog and fatigue being the two main symptoms. In hindsight I had vaccine injury. I was functional before receiving the vaccine. Did it make my Lyme worse? Not sure. Hindsight.

I am sorry to say, you will not find that insurance will cover hyperbaric therapy. Especially the mild chambers.

Newtowne offers a rental program. I know of people who have had a "go fund me" to help raise money.

mHBOT is not a quick fix. Although, there are many who report improvements with just a few dives. My initial diving period was 27 months. After that, I did maintenance dives. My plan is to always have a mild hyperbaric chamber in my home. It has benefits beyond Lyme. It is also anti aging. After many years with Lyme, I have autoimmune symptoms. Diving keeps that in check.

As Phoiph says in the mild hyperbaric thread/post, it is not about chasing the bugs. Diving does many things that are healing and modifying to bring health.

https://www.youtube.com/shorts/6f2U5S4eYf8

{{{gentle hugs}}}

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daisys
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TickTock,
My long time PCP retired and I have a NP nowadays.

Mainly what both have done for me is renew prescriptions and refer me to specialists when needed.

This new one, the NP, has written new prescriptions for me without arguing. So, I value that.

I'm at the point that I'm in charge of my own treatment, which is a little scary.

I've been going to an acupuncturist. She got me into a program with an herb company--CellCore. (I hope it's okay to just put it out there.)

They have good quality herbs, and one of the founders did have LD.

I don't know if it will put me into remission, but I'm familiar with the herbs.

It would be expensive to take them all no matter how I went about it.

At least this way they are organized for me. The protocol is to detox and strengthen my health.

That reminds me--one thing that has helped me is finding out I have the methylation block in my detox system.

I take supplements for it and it's helped a lot.

I do keep a positive attitude.

What helps me:

Bible reading and study. It keeps me calm, steady, and even joyful.

A husband who is supportive (financially and in all other ways).

My hobbies are good choices for someone who can't get out there and expend energy and socialize.

They are: art, reading, and music. None of them are team sports, so I stay rested.

I keep in touch with loved ones, so, have a supportive social network.

They don't have it easy either, so it keeps me balanced in attitude and not totally self absorbed.

That's it in a huge nutshell.

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Phoiph
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Thank you, hiker53 and kgg, for suggesting mHBOT (mild hyperbaric oxygen therapy) to TickTock4422.

TickTock, please don't believe that chronic Lyme disease can't be cured, and the best you can hope for is remission.

The general definition of "cure", is "to restore to health, soundness, or normality". Chronic Lyme can be cured, and I am living proof of that.

Consider that over 90% of people on the planet have recovered from (but still carry for life) the chicken pox and/or the Epstein-Barr virus. Do we say they are only in remission and will never be cured?

Please take the time to read the mild hyperbaric thread, from start to finish if you can:

https://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=125201;p=0

Another good resource for background information is "The Oxygen Revolution", by Dr. Paul Harch.

Also consider that to become completely well, you must also work on healing the gut, as it is tied directly to your immune system. Taking hand-fulls of pills daily is not likely to help this process.

If you are interested in mHBOT, don't let lack of finances limit your thinking. I have helped people with zero resources access a home chamber. Once you have read more about it, we can discuss the possibilities; just PM me.

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Catgirl2.0
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Thank you hiker for suggesting EM. I opened the door to EM and I've never looked back.

I was raised to believe that western medicine was superior to all other forms of healing. For emergency room stuff, western medicine is terrific. For chronic illness though, EM is light years ahead of western medicine. Best of all, there are no side effects.

I was desperate and willing to try anything to get my life back, so I finally got to a place where I could wrap my head around trying EM and keeping with it. I'm so glad I did!

I patiently got EM each month until one day, lyme was gone (I felt spectacular!). EM was so effective in healing me from lyme that I knew I had to learn it in case I ever got bit again. I did get bit several times, and EM healed me each time. So now I help others with lyme and company, and all sorts of chronic illness, even cancer.

EM targets pathogens like nothing else I've ever tried (and I've tried lots of things), including abx. EM is capable of beating pathogens down to micro colonies that can't do much of anything (zero symptoms).

After all the things I threw at lyme and company, the bugs just couldn't take EM. EM even helps with heavy metals, mold, anxiety, viruses, you name it. EM was made for chronic illness.

--------------------
Remember to keep an open mind

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Beverly
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Hey Catgirl what exactly is energy medicine?

--------------------
God Bless You! Everything..is just my opinion.

Posts: 6638 | From Michigan | Registered: Jun 2001  |  IP: Logged | Report this post to a Moderator
   

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