No hope

I'm so sorry, Sunflower. Finding resilience after years of chronic illness is unbelievably hard - harder than people who have not been through something like this can imagine.

I have heard from several people on this forum that they struggle to recover after years of benzos and other psych meds. I wonder if the neurotransmitter tests are helpful, or if they don't mean that much (some depressed people have high serotonin and some low, so it's more complex than drug commercials say it is, etc.). I saw a webinar once that laid out which symptoms were associated with which neurotransmitters, and suggested what to supplement to help. I'm not sure if this could be useful to you, but just in case, here are my notes:

Low SEROTONIN: hard to fall asleep and stay asleep, irritable, irrational emotions, teary, sound sensitivity, temper, depressed, want to be left alone. Supplement: tryptophan, 5-HTP, multi.
Low OPIOIDS: life feels incomplete, shyness, insecurity, inferiority, undeserving, low self-esteem, inadequate, fearful. Supplement: DL phenylalanine, with or without L glutamine.
Low GABA: anxious, edgy, knot in stomach, trouble falling asleep, hard to turn mind off, panic, use sedatives to relax. Supplement: GABA, L theanine.
Low DOPAMINE: no pleasure, no rewards, apathy, less love for loved ones, less "color" in life, no fun or interest in things, less spiritual connection or meaning. Supplement: L phenylalanine with or without L glutamine, SAMe.
Low NOREPINEPHRINE: low energy, low drive, hard to get going, don't finish what you start, want to sleep or hibernate, depressed, paranoid, doubt own survival, bored. Supplement: L phenylalanine with or without L glutamine, SAMe.
(SAMe best pain blocker, so opt for that if you can afford it and have fibro.)

As for still having Bartonella issues, there's no test that tells you for sure that it's no longer an active infection. You will make antibodies for life, once you have had an infection, so you can test positive forever on antibody tests. Even a blood culture would only tell you what happened to be in your bloodstream at that moment. It makes me uneasy that your doctor also told you that you don't have infections because you're not IGM positive. With tick-borne disease, almost all of us are only IGG positive unless the tick bite is very recent. LLMDs treat people with only IGG positivity. Maybe I'm misunderstanding what you wrote, but your LLMD doesn't sound like she knows (or agrees with?) the ILADS guidelines other LLMDs follow.

The MCAS issue is tough because if you are still exposed to triggers, then three months of H1 and H2 blockers might not do much until the triggers are removed. Oddly, some meds work for some people and not others, so people often try multiple things before they find something that helps. Are you consuming high-histamine food or supplements, or being exposed to allergens or irritants other than mold? That said, I would expect at least a little change in your MCAS symptoms in three months on quercetin and the H1 and H2 blockers. Maybe try another set of mast cell stabilizing meds/supplements before giving up on the MCAS angle? Have you given a limbic system retraining program a try?

Just throwing some ideas out here for you. I hope that the next thing you try is what helps you turn a corner, Sunflower. We're rooting for you (no pun intended)!

If it is PWS maybe makes sense to do a deep dive on neurotransmitters and figure out what supps may help ease the transition/healing period.

https://bridgingthegaps.com/re-balancing-the-addicted-brain-part-v/

I believe that’s very well possible. You see this in the lyrica/Cymbalta toxicity groups too.

One of the mechanisms is neurogenic inflammation. It’s a bit different than an autoimmune process.

https://www.physio-pedia.com/neurogenic_inflammation_in_musculoskeletal_condition#introduction

I also believe the metabolic systems are involved in the inflammatory process.

You said you’re pre-diabetic. Maybe makes sense to start focusing on diet and lifestyle for a bit and see how the symptoms do

Sunflower1920 said...
I had a phone appt with my LLMD the other day. At the end of my rope. She still doesn't know why I am still sick.

Currently waiting on my MMP-9 and my TGF beta 1 blood tests to come back. I told her with the newly diagnosed MCAS and taking Zyrtec (used to take Claritan) and Pepcid AC and Quercitin that I have seen zero change in the last 3 months.. She is wondering and hoping my MMP9 and TGF beta 1 will at least go down. I asked her how accurate Great Plains lab is with their mycotoxin tests since I only barely tested positive for Orcha-A. She said I could always do another one through Real Time lab to compare and contrast, but Real Time is alot more money.

I asked her if there was ANY chance maybe I still have Bartonella since of course Igenex is not 100 %, I asked the same about the Relapsing Fever and Babesia (never treated for Babesia but was tested at beginning) but she said they all indicated a past infection, nothing was IGM pos. Now I am wondering if it's another coinfection that was never checked like Ehrichia/Anaplasmosis, Rickietta, Mycoplasmic pneumonia. When I first entered treatment in April of 2019 the M. pneumonia and Ehrichia/Anaplasmosis were negative through Lab Corp.

My biggest fear is putting more $ into this with still no answers. I refuse to go into bankruptcy or clear my whole savings, but at one point do you say enough is enough. I was told maybe I should find another LLMD but again that's more $ along with their own testing. I am so torn. My anxiety and worry is at an all time high. I have never been this scared or hopeless in my life.

I'll be turning 37 in a few months. I still cant even find a decent apartment that I can afford. I am single with no children but want that someday. I am not getting any younger. The only positive thing in my life is my job/career that I started over a year ago. I recently got a small raise due to my excellent performance evaluation. There has to be more to my life than just working. My family, friends and co-workers are even wondering if it's something else non-lyme related at this point

My LLMD said some of my thyroid blood levels seem off, in mainstream medicine they are normal (of course!) but she said something about my T3 on the low side and she could help me out with that. I do have insulin resistance and PCOS.

I had a friend tell me as well this all very well may not be lyme related anymore but due to many years on heavy duty psych drugs. He is not saying I never had Lyme/Co's, I did. But now we have to look outside the box. The same thing happened to him, he treated for years and still couldnt get well, it was due to benzo withdrawal. Alot of my symptoms look like Protracted Withdrawal Syndrome now. My mouth dropped when I looked at these symptoms. I wasnt just on benzos but SSRI's and anti psychotics. The only psych med I am on now is Zoloft 100mg and I'm currently doing a *very* slow taper off.

Again, I just don't know. I am so torn on what to do now. There is no clear cut way to figure this all out. I'm getting pulled in all directions.

You need a new llmd - testing alone shouldn’t drive what you’re treated for.
Plus the tests have high rate of false negatives.
Whether it’s IgG or IgM - it needs to be treated.

Babesia should definitely be treated - at least for a few months
Get some Mepron or Malarone and take it for a minimum of 4 months.

My llmd treats ALL his patients for Babesia.
He has been in the Lyme business for over 20 years and is one of the most knowledgeable of the llmds.

You probably need a new llmd. Look around and try to find someone who seems to have new ideas from what’s been tried on you. Check YouTube to see if you like how they talk and approach things.

Alternatively, you confess their books and see if you can get your current provider to to try thing you think might work out of others’ books/protocols

SunFlower,

I just wanted to let you know I was chronically ill with Lyme Disease for 15 years before I got a diagnosis. I have now been treating for ~6 years and I am in a much better place. I have lived through some very dark times in my life and experienced everything you have described in your post.

While I am still striving for 100% and have my occasional setbacks, I have begun to be able to experience life as a healthy person again. I went to a wedding last month, drank alcohol in excess, danced for hours, and got by on very little sleep. All of this was something I never thought I'd be able to do every again.

It takes an immense about of perseverance to make a recovery. I was as sick as they come, bedridden for 2.5 years during my treatment and at times too weak to walk a city block. You can make a recovery.

My best piece of advice is to take it day by day. Thinking into the future will only cause anxiety and your goal is to just survive each day for now. Same goes with finances. When you get your health back, you will be making money again. It's hard to make income while you are sick (see suggestion #3).

It's not an easy road and I still have a ways to go and my setbacks, but like others on the forum, you can make a recovery and get your life back.

P.S - I don't know much about psychedelics but I highly doubt they are the cause of your issues. Just my two cents from doing research and having similar thoughts about what could have been the cause of my chronic illness.

My Lyme Disease Treatment Suggestions:
1) Long-term antibiotics (Minocycline, Cefdinir, Bactrim, and Disulfiram have been what I've spent the most time on).
2) Balancing hormones (Testosterone -- I am a male).
3) Adderall or Modafinil to help with fatigue during treatment (I think it also helps with pain and will help reduce stress by allowing you to work when you'd otherwise be too tired and/or weak).
4) Low-dose naltrexone (helps immensely with herxheimers and pain levels)
5) Detox: lemon water, sauna, activated charcoal, etc..
6) Don't be afraid to experiment (Disulfiram is a very tough treatment but has brought be far and I'll probably go back on it at some point).
7) PATIENCE - it took me a good 3-4 years to finally turn the corner and then an additional 2-3 years to really get to a good level of health. Some recover faster and some slower, however I am just trying to outline how much you need to practice patience and take it day by day.
8) Use overseas pharmacies to save on medical when you can. This has been huge for me and allowed me to save a lot of money and time I'd otherwise be having to spend at doctors appointments. Of course, you must obtain to knowledge and do the research to be able to safely medicate yourself.
9) Create an excel sheet where you can track what treatments you are on and how you are responding. This will allow you to objectively track progress and analyze your treatment and recovery.

Hope this helps,
futbol

I don’t have any thing directly to add to this topic. But maybe some indirect stuff, that helped me.

My ramblings not in any particular order : this

One big thing that chronically ill people have who are trying to fix their problems is huge stress. Huge. I know because I was there for years. was luckily able to function but after several decades functioning became very difficult and I was freaking out.

Is very hard to accept that after regular doctors gave up on me this may be a long time to figure out.

Now I can say it certainly helps to take a setback, ground yourself, look at your life, where you came from where you are today and where you want to be ....and then the big part- be thankful for what you have even though it may not seem very good.

I had to change some life plans and I will never be able to go back and start over where I left off, this kind of sucks, but that’s life and I’m ALIVE today functioning 90%. That can be a hard pill to swallow but for millions on the planet that is reality.

On the opposite side of that there’s some people in the world that had absolutely incredibly awesome lives but then then died early. And remember sometimes our dreams are cultivated by what popular culture says they should be, stay true to yourself. Peer pressure and other forms of social brain washing should mean nothing at all even though it is out there. I’m kind of a music fanatic with many different types that I like. One of my favorite Pink Floyd albums Animals, divides humankind into pigs, dogs, and sheep,...there’s some pretty good meaning to it. Most of us have been programmed to be sheep.

When you cannot find what the exact problem is - diet, and mental maintenance can make a improvement on the rest of your body overtime. I realize there are people here that Pooh Pooh diet, it doesn’t have to be expensive, it takes experimentation and time. There are a bucket load of natural supplements that help with the mental aspect as well. I always purchased new supplements in the smallest bottle possible.

In the meantime the time required while people figure these things out is pretty hard to wrap your head around, this is not something any of us ever planned on happening. Just remember others have figured it out within time, that should be of some hope. When there’s hope there’s less stress.

I had huge amounts of body pain all over, could not sleep for more than three hours for years. Depression first then that went away and turned into anxiety which was a little bit better I suppose. I still have some anxiety in stressful times of my life but for the most part it’s under control.

I forget how nice of a luxury it is to actually sleep like I can again today. Its not perfect but it’s pretty good, so I know that is something I cannot take for granted. And I just came back from the big box hardware store so I was on my feet walking on hard concrete for about an hour, and nothing hurts which is quite remarkable compared to before. But ...if I had to work in such an environment I wouldn’t be able to stand 8 hrs without spine or foot pain. When old retired aged people work in these places I often wonder how they do it.

Oops, that was almost a book

Post Edited (astroman) : 1/16/2022 7:15:02 PM (GMT-7)

Thank you guys, I appreciate it I do. Sorry I haven't reached out to you individually. Its been a rough weekend but good news my father is still feeing well after testing positive for Covid. I did a test yesterday and waiting on results, I still feel fine.

There is an LLMD believe it not not a mile down the road from my job. I have looked into her webpage the last few months and I am liking what I see. I haven't made the plunge to book a consult. A member in another lyme forum gave me her name a few years ago but I had already began treatment with my current LLMD. Her fees are alot more than my current LLMD, but seeing her might really be the answer.

Diet is very much a hard thing. I believe for many. It's tough to not only eat healthy, but organic. Even if something is deemed "healthy" you have to becareful of ingredients. Grocery costs have ski rocketed due to supply and demand from the pandemic. I wont sound ignorant because I know EVERYONE is feeling that effects.

I don't mean to sound like a broken record talking about finances but I really don't want to go broke from this. We're all in the same boat I know, some worse than others. This disease has taken so much from me and alot has been trial and error. I feel the last 3 yrs of treatment, as mentioned, I've lost more than I gained.

Your LLMD seems basic. If you are curious about Bartonella or Babesia, I have found TLABdx to be the most sensitive. Its a lab run by Dr M and a scientist at the University of Minnesota. My full babesia panel at Igenex was negative, including the FISH. Blood examination with TLAB was clearly positive for Babesia. Also, Bartonella can take several years of heavy treatment to eradicate, and antibody testing gives ZERO indication of whether an infection is eradicated or not. It also seems to be the infection that most often triggers MCAS. There are so many bad LLMD's out there.

Yah that is the lab. I can send you some of my results if you are curious what they look like.

I think most mainstream doctors order the antibody tests (as they are told, wonder why) and figure most patients won't question it any further, but there are quite a few of us now, asking the same questions...

and I hear you about $ and debt, it's hard not to feel that pain when one had very little resources to begin with...or already in debt, etc.

JaSon2233 said...
Yah that is the lab. I can send you some of my results if you are curious what they look like.

A new lab is always interesting. Curious about what they test. My email is enabled in my profile.

Where did you learn about this lab?

Surprised there has not been a post on it......proof this forum is almost dead compared to years ago(!)