Topic: Who here has not recovered after treatment?
cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
After fourteen years of treatment, my LLMD says I have Post Treatment Lyme Disease. He's a good doctor and I've done many years of antibiotics and alternative treatments.
But I'm still living with severe fatigue, along with headaches, brainfog, environmental illness and a myriad of symptoms.
Also, still have Chronic Reactivated Epstein Barr Virus, mold sensitivity / illness, food allergies, MTHFR, etc
I don't recognize most of the names the members here; The ones who were here years ago are gone. Does that mean they are well? Have given up?
Does anyone else have a similar story? If so, have you found something that helps significantly?
Posts: 1173 | From USA | Registered: Nov 2007
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Wow I must say your story sounds earily familiar to mine. Symptoms too.
I keep getting worse and my LLMD has no idea what to do with me now. I've had people tell me to get a second opinion with another llmd, I've had others say it sounds non lyme related...
I'm torn on everything.
I'm suffering mentally and physically. Going into treatment almost 3 years ago I lost more than I gained.
Any history of psych meds? Are you currently on them?
Feel free to PM me if you'd like.
Posts: 597 | From Massachusetts | Registered: Mar 2019
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
Thanks for sharing, Mountainsky.
I hope I don't sound flippant when I say there is reason to hope for you to get well! Yes, three years is a long time to be ill, but not so long that it is impossible to recover. Keep plugging away!
I don't have a history of psych meds. I am curious why you ask -- do certain psych meds interfere with Lyme treatment? Or something else ... ?
The list of meds, supplements, devices, and alternative therapies I have tried is extensive. Some helped immensely. Some not at all. Some caused more harm than good.
I've been treated by four LLMD's and various specialists.
I'm currently doing Bee Venom Therapy, and have 20 - 30 months remaining.
For the past several years I have tested negative on Borrelia, Bartonella, and Babesia, through multiple labs.
Posts: 1173 | From USA | Registered: Nov 2007
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posted
I have been at it since 2011. 2 LLMDs. The same one since 2012. I still have fatigue and cognitive issues. The cognitive issues only seem to improve when I am on a certain group of abx. Right now he is assuming mycoplasma so on a totally different protocol than I ever have been. I am not seeing any cognitive improvement with this protocol.
However with all the abx I wonder if it all goes back to the stomach. Endless cycle of toxins and inflammation. the abx take the inflammation away but when their anti-inflammatory effects wear off I am back to where I was.
I am trying to get off all my meds. I am sick of taking this stuff. If I am going to have insomnia with meds I might as well have it without them. Currently working on clonazepam that I take for insomnia. it is a hard one. I have many stops and restarts. I did get off of seroquel and ativan.
My son has a lyme doctor who is 1/2 the price of mine and he got well. He is young though. Anyway I may go to her for a second set of eyes. She knows how my doctor treats.
I am with you regarding all the supplements. therapies etc. I have never done bee therapy though! I had an acupuncturist whose office partner had lyme. He would catch bees during bee season and she would sting acupuncture points.
Have you looked into high doses of thiamine? Yes I know another supplement. Elliot Overton has interesting videos. also the horomonematters.com site has some great case reads.
Once I get going on the clonazepam reduction i am going back to thiamine. There are so many success stories with it. And so many of my remaining symptoms fit it.
Posts: 848 | From Somewhere | Registered: Nov 2010
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posted
I tried everything since 2011, abx, herbs, devices and alternative stuff (I was on here way back then but I lost my password and started over). I periodically check in here because I get an email from time to time from someone asking me a question, or I just feel the desire to help.
I completely healed from lyme with the help of energy medicine (I used several, but one sealed the deal). I thought it was a crock when a practitioner of mine told me it worked for several people she knew (she wasn't doing the energy medicine but referred me to who did).
It took me a few years before I even considered trying it (thought it was a load of crap). I had nothing else to lose, and just tried it. I gave it 6 months and noticed some tiny little things went away, but they were tiny little things nothing else ever got rid of, so I gave it a chance and kept going with it. A year went by and I saw more little things go away. I happily knew it was working and kept plugging along with it.
I had a wicked case of lyme and company, so it took some time (works in layers). By about 2 years, I made so much progress that I knew I had to learn it so I could treat myself if I ever got bit again (and I did get bit several times. It's called EM (eminusmirus) and it hits the pathogens like nothing else I've ever experienced (it's not my company either). And it didn't just hit BB, it hit the co infections too.
If you can let go of the notion that only something tangible like a pill can heal you, it's worth doing. There is no difference between energy and matter when it comes to pathogens. No difference at all. Also, everyone is different. A friend of mine got rid of lyme in 6 months. Others a year. Some just trickle along. But for me, EM helped significantly. I thank God I found it.
-------------------- Remember to keep an open mind Posts: 81 | From earth | Registered: Mar 2019
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posted
I got well, but now I have MCAS .. maybe had it all along, but it turned ugly on me in 2014.
I'm managing to live a pretty good life, but have to take many meds and my foods are extremely limited.
Never, never, never, never give up!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96238 | From Texas | Registered: Feb 2001
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
cottonbrain,
I agree with Lymetoo...never give up or give in.
Please take the time to read the Mild Hyperbaric Treatment thread from beginning to end. I believe it will give you hope as you read about recoveries (and there are many more that don't post on LymeNet).
If you are interested, you can PM me anytime. I am well but continue to post here to offer assistance where I can.
Posts: 1968 | From Earth | Registered: Jul 2013
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posted
For me it doesn't seem like giving up or in but more treatment fatigue. The endless rabbit holes which give hope, cost money with no results. No offense Phoiph but hyperbaric seems like another rabbit hole to me right now. Maybe if I took a break mentally and financially to rabbit holes I might try it.
If I dont occasionally treat (pulse) my cognitive declines. If this improvement didnt happen, I would stick a fork in me and call me done. And the only reason I continue is because my cognitive effects my horseback riding SO much. Otherwise, as far as I am concerned, my family can put up with my brain issues.
The one thing I would like to try is too stop all lyme treatment and work on my stomach. I doubt LLMD would go for that. Maybe I will ask since his latest protocol to get my brain back doesn't seem to be working.
Posts: 848 | From Somewhere | Registered: Nov 2010
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Terv,
I understand "rabbit holes" very well; I went down them for 8 years. Fortunately, I hit the right rabbit hole.
This is why I say you can never give up or give in (i.e., accept status quo) ...you never know when the solution is just around the corner.
Posts: 1968 | From Earth | Registered: Jul 2013
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posted
I'm sure I was bit by a tick in 1970. I didn't get diagnosed with Lyme disease until 2007.
Finding a good LLMD (Lyme literate Dr.) saved my life.
After being on antibiotics for years (switching every 6 months), I started wondering if I was suffering from a build up of resistant infections. I felt I had plateaued.
So, after researching additional treatment options, I started rifing with a Doug Coil machine. That cleared out the brain fog immediately.
That was 2 1/2 years ago, and I continue to benefit. I no longer have borrelia symptoms. The Babesia symptoms finally got under control, and just recently, I believe the Bartonella symptoms are finally gone.
I used to think that having Lyme disease for so many years meant I would never get better. Now I feel I will reach the point of just needing maintenance. Maybe I'm there now.
I'm getting better just in time to deal with age related health challenges.
Posts: 556 | From New Mexico, USA | Registered: May 2007
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posted
I had lyme and treated right away in 1996 after bulls-eye rash w/ 21 days of doxy. Then had neuro symptoms & sick again-chronically and flare ups. Struggled on my own without any answer/treatment. Only short term abx when flared up by pcp. symptoms went away at some time within the last 10 years on their own. left w/ damage-limited functioning & coulnd't drive. then had a dental filling 6/2019 and still sick w/ no answer/treatment. Really struggling this time as symptoms are severe and constant. Miss all the old timers also.
Posts: 554 | From southern new jersey | Registered: May 2003
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posted
I had it really bad and co-infections. Treat parasites, use Dr K and Dr C approach. A different thing that I also feel helped was treating Babesia(Zithromax with Mepron, rotated cryptolepsis and Artemisinin), this with infrared sauna. Probiotics, juicing, raw garlic, PEMF, B-complex for methylation. Treat sleep issues with Lyme Literate Psychiatrist if needed.
Posts: 708 | From CA | Registered: Dec 2011
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Two things I have discovered about my insomnia. I am sensitive to salicylates in meds and foods. It can keep me awake against all odds. (So, avoidance is key.)
Also .. I was dxd with sleep apnea last year and since wearing my CPAP, I sleep like you wouldn't believe!! I also feel TONS better!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96238 | From Texas | Registered: Feb 2001
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I have so many food issues now I wouldn't be surprised if that contributes to it. I think all these food sensitives are a reason so many people do well on carnivore.
It is strange because as an example, I just stopped all supplements and I immediately got 5 hours sleep which is fantastic. But after a couple days I revert back to normal 3-4 hours. Previously this happened when I just stopped my b-complex. I make a change and something good happens
I get so hopeful I found the culprit but then not so..
Posts: 848 | From Somewhere | Registered: Nov 2010
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posted
I'm still struggling. Treating since 1999. Best progress was following several years of IV antibiotics (Rocephin, Claforen) and treatiing Bartonella (IV chloramphenicol) and Babesia (Mepron, plaquenil, zithromax). However, the doctor supervising that treatment changed clinics and I was unable to see him anymore.
I've continue with various courses of oral antibiotics and other things. Recently (2020) diagnosed with IgA vasculitis in my nose (YEARS of never ending "sinus infections" and two surgeries later) and Specific Antibody deficiency. We are treating the vasculitis with ... get this, Dapsone (you must know I think this is Lyme related) and SubQ IG infusions). I've also been receiving Allogen injections to hopefully deal with my seemingly permanently numb/tingling left hand.
Following all these "additions" to my world, I am happily experiencing less overall fatigue/weakness. Of course, I'm never sure what is killing what or working on who but, I'll take it and rejoice in the day God is giving me.
I was infected/symptomatic at least 15 years prior to my diagnosis so, I was chronic/neuro before I ever knew I had this stuff (Lyme, Babesia, Bartonella). Subsequently, I became pregnant and delivered my daughter also before knowing what was wrong with me. I wasn't diagnosed until she was 10 years old and by age 12, we tested her and found she was positive for all the tbd's that I have plus erlichia. During her early, emergency delivery, she also suffered strokes in each quadrant of her brain resulting in permanent issues with fine/gross motor skills. Of course, I feel my illness may have contributed to this struggle she now faces forever.
My symptoms ebb and flow in severity but are always present. I look up and years have passed by and I don't realize it and not able to remember or do much. I've been unable to work since 2003; my husband left in 2008. Since then, I'm fighting an unwinnable battle ... alone. But, I get up every day and try do something!
I'm better than I was in 2003. That was the year I was bedridden and really couldn't talk or move or drive. I often forget/lose my words still but, I can talk and thankfully, driving ability is present if I don't try to go far or somewhere I've never been! LOL ... I still can't ride my horses but, I am able to walk out there and pet/feed them! I miss my independence and energy and all that made up my personality ... back in the day!
I haven't checked in here for awhile and this is the first thread I saw! My chiropractor is "lyme friendly" and was asking things I can't remember how to answer so, was getting him this link!
I think, if nothing else, we are resilient people ... for sure. Take care out there.
-------------------- Posts: 704 | From Huntsville, Texas | Registered: Oct 2000
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posted
I guess I'm an "old timer" popping back in as well, and now I'm seeing this thread also.
I have Lyme/babs/bart/one other that I got in 2004 and 2007 secondary to ME/CFS which I've had since 1992 and which was already fully disabling (and of viral onset, like Long Covid). My treatment for the TBDs took over 3 years to get started, then was cut off repeatedly, so like a lot of people, it was way too delayed and became cardiac and neurological.
Ultimately, a very long course of IV antibiotics plus a lot of orals has reversed *some* of the TBD symptoms, and exactly zero of my preexisting ME/CFS symptoms -- thus proving they're not the same despite a lot of docs trying to wastebasket it all together. But I'm really frustrated, because I'm definitely much more disabled and definitely more cognitive-impaired than I ever was before the TBDs.
An LLMD in recent years has been helpful, but my local supposed LLMD dumped me in the pandemic because I'm too complicated of a case and because he was "uncomfortable" with my long-term antibiotic treatment. I'm trying to get an attorney but even attorneys in my state are terrified of Lyme disease treatment.
Tried lots of alt treatments like everyone also, incl HBOT and many others.
I'd love to be more optimistic and my LLMD who isn't her hasn't given up on me, and I'm grateful for that, but I also live in fear of another doc deciding I'm a treatment "failure" and casting me aside to just rot and die.
I've been on antibiotics at least 10 years now, not consecutively as there were too many breaks, but still. Probably more like 12-13 in total. It does start to get discouraging after so much time.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
LymeMECFSMCS,
If you care to share, I am interested in your experience with HBOT. I have a few questions for you:
Did you do high pressure (i.e., above 1.5 ATA)?
How many sessions did you do, how frequently, and how long was each session?
If you were doing mild pressure (1.5 ATA or less), were you also using supplemental O2?
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I thought I got cured but then tested pos. again years after and that was after other TBD showed up in my serum. I also developed severe MCAS (but had lifelong to begin with ).
Have you tried detoxing like crazy? that is when I started to make great leaps in feeling better after a big lull in my health as bad, etc.
I think it will be hard for me to heal 100% at this point, but I stil remain hopefull of that maybe happening one day.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3585 | From Eastern USA | Registered: Jul 2013
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posted
Here's something about ME/CFS being different from LD.
Dr. Dan Peterson, who was involved from the beginning of CFS as an emerging illness now does research.
I read that he got samples of spinal fluid from 4 groups of people: normal, and those diagnosed with FM, CFS, and LD.
The 3 ill groups all had extra amino acids in their spinal fluid, which means also in the brain.
The amino acids found were different with each illness and not found in the healthy fluid.
I'm not techno savvy, but hope someone finds this research results, because it shows separate illnesses for the 3 diagnoses.
Posts: 556 | From New Mexico, USA | Registered: May 2007
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Been treating for twenty years, probably infect many more than that. Have seen Dr. P., Dr. H.,Dr. J., and several others. Now on second try of iv antibiotics.
I sympathize, and I’m so sorry for anyone going through is.
All three of my children are Lyme and Babesia infected. All been treated by the same doctors, with the youngest starting with Dr J in New Haven, God rest his beautiful soul.
Turning to HBOT with background fear of having Babesia
I’m almost totally housebound and bedridden.
There are times I don’t know why I am still alive. Hope keeps me around. Never give up hope.
Posts: 1032 | From North Carolina | Registered: Aug 2003
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
lymewreck36,
You say you're turning to HBOT...hopefully you planning on doing mild hyperbaric?
Please consider reading the mild hyperbaric thread (from beginning to current, if you can). You will find a lot of support there.
I had severe Babesia, and got well with mild hyperbaric. I'm happy to help you, just PM me.
Posts: 1968 | From Earth | Registered: Jul 2013
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Yes, mild HBOT. Only concern is Babesia. I’ve read all the long threads here on it, and have no conclusive feelings about after reading everything. I’m stuck in limbo regarding HBOT.
Posts: 1032 | From North Carolina | Registered: Aug 2003
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Well, if you'd like to talk about it, PM me and we can set up a time. By the way, I don't sell anything or take compensation.
Posts: 1968 | From Earth | Registered: Jul 2013
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posted
I have recovered after 4 years of IV antibiotics. I was severely neurologically impaired. I have fibromyalgia as most of my family does. Lyme did affect my heart. I have bradycardia and keep my BP up with electrolytes. My husband was also in treatment. Now with a defibrillator/pacemaker, he has ventricular tacycardia managed by the ICD.
Changing diet was the most positive health change. I cut carbs and eventually cut them too to heal. I have been carnivore for 10 months and feel the best I have ever felt. I still supplement and have so far not gotten Covid.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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posted
I went carnivore in June 2020, lost weight and felt the best I had in over a decade. I didn't get jabbed because a fellow neuro-lymie had a severe adverse response and is still suffering. I got covid in February of this year and went on the FLCCC protocol. It took a while to get back to 'normal'... Though I now find I am getting tired again, a bit foggy, headaches and heat sensation on my torso. Do you know any Lyme who didn't get jabbed and have recovered from covid?
quote:Originally posted by faithful777: I have recovered after 4 years of IV antibiotics. I was severely neurologically impaired. I have fibromyalgia as most of my family does. Lyme did affect my heart. I have bradycardia and keep my BP up with electrolytes. My husband was also in treatment. Now with a defibrillator/pacemaker, he has ventricular tacycardia managed by the ICD.
Changing diet was the most positive health change. I cut carbs and eventually cut them too to heal. I have been carnivore for 10 months and feel the best I have ever felt. I still supplement and have so far not gotten Covid.
-------------------- When you reach your "wits-end" remember this: "Peace I leave with you, my peace I give you. I do not give as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27 Posts: 397 | From Loudoun County Virginia | Registered: Mar 2007
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posted
My husband and I think we had it a few months ago. Not jabbed.
He had some lingering affects but is doing well now. Took him a few months and he is still tired. The doctor also diagnosed him with EBV, so who knows?
I would say just be patient. I'm doing great!
You might consider trying LDN. It has changed my life, as has my CPAP.
I honestly think my husband's main issue is sleep apnea.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96238 | From Texas | Registered: Feb 2001
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quote: Do you know any Lyme who didn't get jabbed and have recovered from covid?
Me! I think. Time will tell as I get more active. I tested positive about 2 weeks ago. I got pretty sick compared to everyone in my area. My husband caught it from me so we must have had the same variant and he didn't get nearly as sick. I had a high fever, really bad sore throat etc.
The fever lingered for 7 days.
When I got it, my LLMD put me on ivermectin every other day for 7 days. 7 days of mino plus a bunch of supplements
My last symptoms were a dry cough which lingered along with a really bad taste in my mouth. Both seemed to disappear together.
Fatigue is also there but I think it is more from just being sick and body trying to recover and not unique to me having covid. We will see. That is the one thing I am worried about.
My LLMD had me on ivermetin once every 2 weeks. I think I needed to be on it every week. I got sick on my "off" week. Other people who go to that practice but with a PA was prescribed it once a week.
Posts: 848 | From Somewhere | Registered: Nov 2010
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