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Posted 1/18/2021 10:50 PM (GMT 0)
My mind is sludge, and my body is a dysfunctional, toxic dumping ground for uninvited guests. I've been at this for well over a decade, and nothing has truly paid off long term. I have tried almost everything there is to try and yet here I am, back to square 1. Except now, I am no longer a young, "virile" man. I am deteriorating. The stamina/enthusiasm just isn't there anymore. And I'm saddled with the task of tapering from diazepam before I can even adequately treat myself. Why? Tolerance withdrawals and extreme sensitivities to darn near every herbal treatment option under the sun. Also cannot take the most effective antibiotics available to me, because they send me into withdrawal by virtue of their effect on diazepam metabolization. So, I'm left with the only option but to taper off completely, and then treat with aggressive antibiotic regimens, (at least when my gaba receptors heal enough, which could take years) which will undoubtedly also be a hellacious experience. My chronic gastrointestinal dysfunction that I cannot seem to remedy with the tools at my disposal certainly won't be of any help either. I was hopeful recently that bicillin/azithromycin would have some measurable effect on mitigating my severe ocd (among the myriad of other symptoms), which would have softened the blow of this reality slightly, but no luck. There is no way out of this that doesn't involve me suffering for years more. At the risk of sounding ungrateful, I'm already 27 years old and feel as if I haven't lived a day in my life. I have lyme disease, mast cell activation disorder, cirs, probably other coinfections, etc... it is miserable beyond explanation. I am allergic to everything it seems and something always hurts. And now it feels like my prison sentence has been extended indefinitely, with the amenities available to me having been drastically limited, so to speak. Not to mention, society is crumbling around me. Who knows if there will even be something worth returning to when I "get out." I just wish things were different. Jaded is too mild of a term to describe how I feel.

Post Edited (disillusioned404) : 1/18/2021 4:03:01 PM (GMT-7)

Posted 1/18/2021 11:26 PM (GMT 0)
Hey there my friend, I'm sorry youre struggling so much. It mgiht be helpful to know your full history and what you've tried, but I have a few thoughts regardless.

There's been a spirited debate on this forum recently about the role of infection and autoimmunity in lyme. There are people arguing both ways, but a simple way to look at it is that lyme is a continuum, with infection on one side and autoimmunity on the other. Everyone lies somewhere in between. What starts as infection initially and needs to be treated as such, can become an autoinflammatory process that often can require other modalities and interventions.

With that being said, your case sounds like one of the latter. We know that you have a mast cell issue. We know that you cant handle most antibiotics or herbs (likely because they aggravate your immune system). We know that you have been on antibiotics for many years, have gut issues, and therefore most certainly have a screwed up microbiome, which means inflammation and autoimmunity.

My first question/recommendation would be, have you looked into mold? Seems like a lot of people with mast cell issues have mold exposure, and it can be very hard to treat anything else until you've fixed that.

Next, I would recommend taking a break from antibiotics and herbs. Herbs flare the immune system. Antiobiotics can too. Your immune system is likely on high alert. You are too fragile for this right now. You are spinning your wheels and will likely spin yourself deeper if you continue.

Next, I'm curious if you've ever tried changing your diet? Everyone says yes, i've tried diet. But i dont mean you ate "healthy" for a couple weeks and gave up. I'm talking a floor to ceiling, committed examination of what you eat and put into your body for fuel, nourishment and healing? If so, what diet did you try and did it help? You have MCAS, so i'm not exactly sure what you can and cant eat, but I'd highly recommend going strict ketogenic and whole foods for 6m. It can be very nourishing for the central nervous system, calming for the immune system and grounding to the mind. Once you do that, you may find youre in a much better place and can tolerate more things. Keto can be extremely healing for a damaged microbiome and GI system that you seem to be unable to repair as well. What are your GI symptoms like? Have you tested for SIBO? If not, I would do that as well. Again the only caveat is that you have MCAS, which could complicate things and which is also why mold likely needs to be sorted out.

Finally, i'm not sure where youre located and how easy it would be, but IVIG can be very helpful for MCAS and immune dysfunction.

Please fill us in on the rest of your history. It's hard to really make recommendations without knowing exactly what someone has tried, how they reacted, what their symptoms are, how they got sick, what they've tested for.

Just some thoughts and my $.02. There are other things you can do as well, but diet is the most crucial and lowest hanging fruit. It's not what people want to hear though, because it takes a ton of work and is zero fun.

Post Edited (dcd2103) : 1/18/2021 4:35:33 PM (GMT-7)

Posted 1/18/2021 11:50 PM (GMT 0)
Thank you for your reply. It has illuminated my lack of necessary explication to get a full profile of my health. I neglected to mention that I lived in a very moldy home for the majority of my life. My family moved out, and threw away all of our belongings. We now live in a newly built apartment. I have only been out of that moldy environment for about 4-5 years. For the first of those 4-5 years, I was on IVIG. For the last 3-4 of those 4-5 years, I was off of it; along with being off of antibiotics entirely. I recently started the ivig again, along with bicillin/azithromycin. I am one infusion deep at this point. My next infusion is roughly 2 weeks from now. I feel little to no difference thus far, but that is to be expected, given how long it has taken in the past to have any effect. As far as herbs, I cannot take them, and have not taken them in years, due to the fact that the majority of anything that is effective against lyme disease seems to have runoff effects on GABA receptors, which has in the past, perpetuated my withdrawal syndrome, (whether it be tolerance withdrawal, or active withdrawal) and in many cases, has made it significantly worse. So much worse, that it negated any effect it had on the lyme/coinfections. (speaking of which, bartonella has been a suspected coinfection for a long time, and I was treated for it) Sida Acuta was a particularly egregious offender of the effects on gaba for example. The minor pentobarbital content in that herb was too much for my fragile receptors to handle. As far as diet goes, I find that to be particularly easy to to reign in after all I have been through. My diet has been more or less immaculate for the past 5 years. Ketogenic. The most I have cheated on it, has been with starchy vegetables, such as carrots/potatoes, and the occasional ham/cheese omelette on a sunday, while out with my father. Suffice to say, I could do better, but any "cheating" has been very minor, if not negligible. I don't think I can even recall what a candy bar, or a piece of cake tastes like.
Posted 1/18/2021 11:53 PM (GMT 0)
Forgot to mention, during those 3-4 years that I was not on antibiotics/ivig, I was using medical cannabis. I stopped using it recently due to negative respiratory effects, and my lyme has flared significantly as a result. I intend to start using it again with vaporizer. I would take it orally, but it is too strong, and again, interferes with the withdrawal process from diazepam.
Posted 1/19/2021 12:16 AM (GMT 0)
The two things that greatly improved my health was seeing a biological dds and aggressively treating parasites. Dental was strongest-dont give up without trying that
Posted 1/19/2021 12:20 AM (GMT 0)
Good to know magoo2. My dental health is pretty abysmal. It's something I've told myself I'd pay better attention to, but I suppose I'll have to make sure I follow through on it now. Otherwise, I don't think I should be able to complain, being that I haven't been doing anything and everything in my power to change it.
Posted 1/19/2021 12:58 AM (GMT 0)
Good history there. That’s good you’re getting back on the IVIG. It’s really too soon to say if it’s helping at this point, 1 infusion is nothing. It takes 4-5 to reach a steady state. You eat a clean diet, that is good, but you’re still having problems. Some of those mold experts out there can probably tell us if it could still be a problem 4-5y later.

What are your chief symptoms? Also, I’m guessing your LLMD is dr K in Orange, CT?
Posted 1/19/2021 1:10 AM (GMT 0)
And also, to be clear, I just tested positive again for lyme disease recently. This time on a standard western blot. 5 bands. CDC positive. What I am experiencing is not a runoff autoimmune disorder. This is an active infection.
Posted 1/19/2021 1:15 AM (GMT 0)

dcd2103 said...
Good history there. That’s good you’re getting back on the IVIG. It’s really too soon to say if it’s helping at this point, 1 infusion is nothing. It takes 4-5 to reach a steady state. You eat a clean diet, that is good, but you’re still having problems. Some of those mold experts out there can probably tell us if it could still be a problem 4-5y later.

What are your chief symptoms? Also, I’m guessing your LLMD is dr K in Orange, CT?

I've been seeing Pari Patel actually. He's been a great asset over the years. I'm sure there are better doctors out there, but he knows me well. We have a good relationship. We pay out of pocket, but he's the most affordable llmd I have come across, and my family is a bit strapped for cash at the moment. I'll get back to you with a symptoms list in a bit. I've got a few things to take care of right now, and I don't want to rush it. I always forget important things when I'm rushing. I can't thank you enough for your willingness to talk with me though. I very much appreciate it. <3 It's been hard abandoning the lyme groups I was in on facebook, but I feel the exorcism of that social media platform from my life has been a positive thing overall.
Posted 1/19/2021 2:44 AM (GMT 0)
Welcome to the forum! How have you been addressing the MCAS? Have you been taking anything to help remove mycotoxins from your system, e.g. cholestyramine? Sounds like you might have looked into this already, but the book Toxic by Neil Nathan could be helpful. Sounds like it's been a long and arduous road. Many good folks here will be happy to brainstorm with you and help to figure out a path to something better!

And I hear you about the world falling apart....
Posted 1/19/2021 2:50 AM (GMT 0)
disillusioned 404,

Welcome to the forum. So sorry for all your suffering. In spite of the length of misery and the feeling stuck, please don’t give up. There’s always hope.

MOLD:

As for mold, that has been the jackhammer I have been dealing with for the past 5 years. Glad to hear your family moved and ditched belongings. A couple of questions come to mind that could be playing into the MCAS, extreme sensitivity, and overall misery.

1). Have you done an ERMI or HERTSMI-2 mold test on the apartment to verify that it is a safe environment?

2). Have you taken Cholestyramine or other natural binders for any length of time to remove toxins?

DENTAL:

Magoo mentioned dental and you responded that your dental health was pretty abysmal.

1). Have you had root canals or abscesses?
2). Do you have mercury amalgams (silver fillings)?
3). Have you had wisdom teeth or other teeth removed?

If none of those, what kind of dental issues are you having?
Posted 1/19/2021 3:02 AM (GMT 0)
SUGGESTIONS:

I had terrible mold and chemical sensitivities for years. I clearly have trouble detoxing and was very toxic for a long time. I also am very sensitive and took tiny doses of herbs, because I herxed on almost everything. I was not completely intolerant, though.

1). TUDCA Plus was a serious game changer for me and has helped me tolerate life so much better. I have been on it a year now and saw results in the first two weeks. If you don’t take TUDCA, I highly recommend it. I would suggest buying a cheaper brand like Nutricost to try it out to make sure you’re okay with it.

During the first few weeks, I had some brief symptom flares followed by improvement - something I had never experienced before.

2). FLUCONAZOLE & NYSTATIN
Due to the mold exposure, if you have not taken these antifungals for a length of time, you seriously should consider it. I had to ask for it. I wish I had been given those years ago. It might have saved me from a lot of pain and suffering. Mold can colonize the gut and sinuses and create an ongoing toxin producing factory in your body, even after getting out of a moldy environment.
Posted 1/19/2021 6:19 PM (GMT 0)
My two cents..........nee to rule out gut Candida (blood antibody test, ins covered) and have a full thyroid panel, TSH is only the tip of the icberg. Many people with active infections have lowthyroid. It needs to be treated separately knowing that it can improve in time...or sometimes not so much if it turns into hashimoto autoimmune.
You can have autoimmune issues with active infection, Hashimoto is a perfect example...
Posted 1/19/2021 10:07 PM (GMT 0)

saraeli said...
Welcome to the forum! How have you been addressing the MCAS? Have you been taking anything to help remove mycotoxins from your system, e.g. cholestyramine? Sounds like you might have looked into this already, but the book Toxic by Neil Nathan could be helpful. Sounds like it's been a long and arduous road. Many good folks here will be happy to brainstorm with you and help to figure out a path to something better!

And I hear you about the world falling apart....

I have taken cholestyramine in the past, but likely not enough of it. I took it only for short stints as I couldn't seem to find the time in the day to take it in a way that wouldn't interfere with the absorbtion of the diazepam I take. I am beginning to think that my only way out of this is to taper off of the benzo, detox in any way that I can in the meantime and work on finding alternative treatments that do not involve herbals. Then, once off of the benzo, begin more aggressive treatment of the lyme with things I cannot currently take because I have that medication in my system. I'll check out that book. I have heard good things about it. I believe my mother may have it actually. I'll ask her about it. Thanks for taking the time to comment. Your input is much appreciated. smile
Posted 1/19/2021 10:15 PM (GMT 0)

WalkingbyFaith said...
disillusioned 404,

Welcome to the forum. So sorry for all your suffering. In spite of the length of misery and the feeling stuck, please don’t give up. There’s always hope.

MOLD:

As for mold, that has been the jackhammer I have been dealing with for the past 5 years. Glad to hear your family moved and ditched belongings. A couple of questions come to mind that could be playing into the MCAS, extreme sensitivity, and overall misery.

1). Have you done an ERMI or HERTSMI-2 mold test on the apartment to verify that it is a safe environment?

2). Have you taken Cholestyramine or other natural binders for any length of time to remove toxins?

DENTAL:

Magoo mentioned dental and you responded that your dental health was pretty abysmal.

1). Have you had root canals or abscesses?
2). Do you have mercury amalgams (silver fillings)?
3). Have you had wisdom teeth or other teeth removed?

If none of those, what kind of dental issues are you having?

I have not done an ERMI or HERTSMI-2 mold test on the apartment we are currently staying in, but we are the first to live in it, and I am inclined to believe I would smell any trace of mold if it was here. Barring the lingering mycotoxins/spores that followed on a few key items that my dad will not let go of, but I've been down that road, and he simply will not rid of them. (hollow body guitars) The apartment was only built roughly 4-5 years ago and we are the first tenants. As far as cholestyramine, I have used it briefly in the past, but never could find a suitable routine, due to its propensity to absorb the diazepam I take. So I have not given it a real chance. I did take a longer course of it when I was living in mold, but that was pretty useless, given the obscene concentrations of mold I was inhaling on a daily basis.

As far as dental health, I had one root canal when I was very young, but none since. I also, do not have any mercury amalgams/silver fillings. I do however, have untreated cavities. The dentist I went to see last year, didn't feel it pertinent to treat, but I think we both know that's a crock. I still have my wisdom teeth as well. Never bothered to have them removed. That is where the cavities are actually.
Posted 1/19/2021 10:20 PM (GMT 0)

WalkingbyFaith said...
SUGGESTIONS:

I had terrible mold and chemical sensitivities for years. I clearly have trouble detoxing and was very toxic for a long time. I also am very sensitive and took tiny doses of herbs, because I herxed on almost everything. I was not completely intolerant, though.

1). TUDCA Plus was a serious game changer for me and has helped me tolerate life so much better. I have been on it a year now and saw results in the first two weeks. If you don’t take TUDCA, I highly recommend it. I would suggest buying a cheaper brand like Nutricost to try it out to make sure you’re okay with it.

During the first few weeks, I had some brief symptom flares followed by improvement - something I had never experienced before.

2). FLUCONAZOLE & NYSTATIN
Due to the mold exposure, if you have not taken these antifungals for a length of time, you seriously should consider it. I had to ask for it. I wish I had been given those years ago. It might have saved me from a lot of pain and suffering. Mold can colonize the gut and sinuses and create an ongoing toxin producing factory in your body, even after getting out of a moldy environment.

I will look into TUDCA Plus. Thank you for the suggestion. Also, will bring up nystatin/fluconazole with my llmd next time I see him. He has prescribed them in the past, but I never took a full course, now that I am out of mold, so you are probably right. It would be a good thing to pursue to rule anything out on that front. I will bring up MARCONS again as well. I think that may still be an issue for myself. I was treated to some extent for it in the past with an antibiotic nasal spray which name escapes me right now, but at the time I was not very conscientious. Thanks for all of your input. I really appreciate it. Makes today feel a bit less depressing/hopeless. At least someone cares. Family has been very aloof lately.
Posted 1/19/2021 10:23 PM (GMT 0)

astroman said...
My two cents..........nee to rule out gut Candida (blood antibody test, ins covered) and have a full thyroid panel, TSH is only the tip of the icberg. Many people with active infections have lowthyroid. It needs to be treated separately knowing that it can improve in time...or sometimes not so much if it turns into hashimoto autoimmune.
You can have autoimmune issues with active infection, Hashimoto is a perfect example...

I'm a fan of your two cents. Thank you for the input. I will raise this issue with my doctor and see if we can run tests, as long as it is covered by insurance that is. But, if not I'm sure he will find a workaround, or just treat on the basis of symptoms alone. I will do a bit of research on hashimoto as well. Advanced knowledge of a potential progression of disease can be a good motivating factor in lighting a fire under my ass.
Posted 1/19/2021 10:43 PM (GMT 0)

dcd2103 said...
Good history there. That’s good you’re getting back on the IVIG. It’s really too soon to say if it’s helping at this point, 1 infusion is nothing. It takes 4-5 to reach a steady state. You eat a clean diet, that is good, but you’re still having problems. Some of those mold experts out there can probably tell us if it could still be a problem 4-5y later.

What are your chief symptoms? Also, I’m guessing your LLMD is dr K in Orange, CT?

Alright, I'm back to list some major symptoms.

Severe OCD
Constant intrusive thoughts/magical thinking
Paranoia
Generalized Anxiety
Short term/long term memory loss
Generalized brain fog
Difficulty retrieving words/stringing sentences together
Neck/jaw pain
Joint pain
Stiffness
Muscle weakness
Rage
Muscle twitching
Depersonalization/derealization
Visual aberrations such as positive/negative afterimagery/floaters (ties into hppd, which I acquired many years ago)
Severe allergies
Chemical sensitivities
Gastrointestinal pain/irregularity
Shortness of breath from time to time (especially when consuming cannabis)
Fatigue
Lack of motivation

That's the majority of what is bothering me, but I know I'm probably missing something due to brain fog. I'll get back to you with more if I think of something else. Thank you for being willing to listen/help. It is so appreciated. Especially on a day like today. I tried reintroducing cannabis last night because my symptoms have gotten so unbearable in its absence, and I used a vaporizer instead of smoking, being that I cannot tolerate the smoke anymore, and I think I ingested too much. Either that, or I just forgot how lethargic/amotivated/disassociated I tend to feel the day after its use. I just feel like I don't care about anything. It's very hard even for me to respond to all of these replies. But it's either take it, or I don't ingest it, and my musckuloskeletal symptoms/pain/rage gets totally out of control. I feel like there are no good options here. I just had an appointment with my psychiatrist today, and I told her that if my llmd doesn't have any effective options to treat me that don't involve antibiotics that interfere with diazepam metabolization, (or if I can't find an alternative solution myself) I feel that I may just have to taper off of the benzo entirely before I take things like minocycline/clarithromycin, which have historically been much more effective than what I am currently on. The zithromax/bicillin doesn't seem to be doing much. I'm just terrified right now at the prospect of biting the bullet and sticking to a taper despite the tortured headspace I already occupy, and my family has no way to understand or empathize just how horrendous and hopeless I feel right now, which makes this feeling of isolation even more robust. I'm forcing myself to try and find other options that I can treat with during withdrawal, but they don't seem to be very promising as far as mitigating the psychiatric symptoms that torture me day in and day out. Physical pain is one thing. Psychological pain is another. It's going to take every ounce of my willpower, and then some, to make it through this. And I'm still admittedly doubtful that I will come out the other side of this. Not to be a debbie downer. Just being honest.
Posted 1/21/2021 2:34 AM (GMT 0)
Hi disillusioned404
During my struggle with Lyme and co-infections, I tried many different approaches to heal myself. Now, I am approaching 100% recovered. In essence, I engineered myself back to good health. This approach consisted of two macro steps: 1) Remove any and all obstacles that impede healing. 2) Provide the body and mind with what is needed to encourage healing. Over time, this combination freed up the internal energy needed to allow my body to do what it was designed to do, heal. What I can say in my case, it was not the medical establishment that returned me to health. It was a 100% commitment to an extremely healthy lifestyle and a deep dive into the mind body connections.

dcd2103 --- You are so right! Diet is without question one of the most important things you can do if not the most important. It is at the top of my list. When I committed to a 100% mostly plant diet with salmon a few times a week, progress accelerated.

Disillusioned404 --- Put not a single morsel of bad food in your mouth for one year. Get a juicer and drink dark green organic juice every day, first thing in the morning. Cut out stimulants (alcohol, coffee, sugar and other crap, etc.). Exercise, de-stress, try time restricted eating, get out and walk in nature as much as you can. See how your body responds and adjust accordingly. Wishing for you the best healing outcome! It is attainable and possible, have no doubt!
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