Lyme disease and healing from withdrawal

[bronxboy8]

I just found out I have Lyme disease and I have had it since 17 that's the reason I was on benzos

And a/d, I would like to tell everyone to always get checked out by a doctor and make sure he runs the right test to rule everything before you say its all withdrawals I hope everyone is doing well.

[bronxboy8]

And I just found out that the lyme is in my brain,some people will tell you everything is w/d and that is the case with some but not all.if you still have w/d after 2 years I would get checked out,there comes a time when you can't keep saying its w/d alot of people have alot of trauma, pun you have any suggestions with this? You seem like you know what you talking about....

[Altostrata]

bb, how did your lyme disease get diagnosed? How do they know it's in your brain?

 

Are you getting treated for it now?

[bronxboy8]

Hi alto I just had a scan done on my brain, and I was coming up low on my blood work, and they said when its in your brain its very hard to see,but when I was a kid I grew up in the deep woods and I started to have bad panic attacks, and cns issues which I was medicated for, and back then I had a false positive test so I went to go see a llmd doctor who confirmed me that indeed I have chronic lyme disease.

[Altostrata]

Are you getting treated for it?

[bronxboy8]

BIOFEEDBACK, MASSAGE THAT'S IT FOR NOW!!

[Shanti]

I was wondering if anyone here has prolonged Lyme Disease. I remember a couple of people mentioning it before, but can't remember who or else I'd just go to your intro. I'm just wondering about how to get the true diagnosis, (not the ignorant one), the diagnosis where some doctors understand the true nature of it. I think they're called "Lyme Literate" doctors. Questions I have are thus, did you have this before you ever took psyche meds? Do you know how to reach a Lyme Literate doctor? How has withdrawal syndrome complicated matters in your treatment and such?

[lundeliz]

Shanti, I was treated for lyme disease beginning in 2006. I was put on Cymbalta as part of my treatment. I ended treatment

 

in 2009. But I went back on Cymbalta because of the w/d, not realizing that it was w/d. There is a lab in Calif. that specializes in

 

lyme diagnosis. It is called Igenex. Most other labs are pretty unreliable in diagnosing lyme. There is a very good website that

 

can help you find a lyme literate doctor near you. It also has lots of good information about lyme. I hope it is okay to put these

 

names on here. It is lymenet.org. Lots of helpful people on there.

[Shanti]

Thank you Lundeliz. Now I do remember it was you that I saw in your sig you had treatment for Lyme's. (as if Cymbalta is a treatment) Did they do the prolonged antibiotic treatment I've heard of? I saw it in a documentary called "Under Our Skin". I'm going to check out the link you posted now.

[Lilu]

I just happened upon this information about Lyme Disease:

 

http://www.dailykos.com/story/2009/05/27/735851/-The-HuffPo-Road-Medical-Misinformation-at-Kos-Edit

This Diary is Misguided or Worse 

To the Kos community: The diarist here has done an excellent job of posting what I would consider ideologically biased misinformation typical of those who are associated with the IDSA. Please note that the IDSA is on a major public relations effort in order to counteract the Blumenthal investigation's results and the in-progress review of their 2006 Lyme disease guidelines.

 

I happen to be one of those unfortunate folks whose Lyme disease (documented by tick bite in endemic area, positive Western Blot and positive PCR) was not cured by the IDSA recommended treatment protocols. Having spent the first 4 years of my Lyme disease following the advice of IDSA following doctors, I ended up on permanent disability with issues that were serious enough to wonder whether I would be here today had I not found a doctor more open minded and literate in Lyme disease than the person who posted this diary. Without that doctor's care, and longer courses of antibiotics, I might not be here today.

 

More importantly, I spent a good deal of the last 10 years reading the science (all of it, not just the carefully selected articles presented by IDSA biased ideologues) and studying the politics of Lyme disease.

 

To claim that the insurance industry has not influenced the standard of care or caused issues for doctors not following IDSA protocols is either the mark of ignorance or a liar. It is documented that insurance companies have reported doctors to medical boards across the country on complaints of overdiagnosing and overtreating Lyme disease. It is also known that insurance companies have threatened to end and/or ended affiliation with doctors who treat outside IDSA guidelines.

 

And finally, it is a documented fact that several doctors who were authors of the IDSA guidelines and who are heavily involved in peer reviewed Lyme disease research also consult for insurance companies and appear as expert witnesses to testify against chronic Lyme patients. They are paid very handsomely for this. Ten years ago, one Yale affiliated doctor earned $700 for each 2 hour case review he performed. Another doctor, affiliated with UMDNJ, now employed by Baxter Pharmaceuticals, earned $650/hr. for his expert testimony.

 

The reason that IDSA is reviewing their guidelines is because their agreement with Atty. General Blumenthal, which found serious conflicts of interest in the guideline creation process, required it.

 

As for the science, there is ample peer reviewed scientific evidence that the Lyme bacteria can and does survive standard treatment protocols. There isn't a Lyme disease test in existence that can prove or disprove persisting infection. And it is because of that fact that the diarist and the IDSA can get away with such spurious claims as one doxycycline cures Lyme disease and chronic Lyme is a myth.

I've been dealing with folks like this diarist for years now. Some of them mean well and have themselves been mislead. Others are doing the bidding of those who are corrupt and greedy.

 

To learn more about the corruption behind IDSA's guidelines, please read my 2007 article, Attack of the Chronic Lyme Denialists, which can be found here:http://www.myleftnutmeg.com/...

To examine the science for yourself, please check the following links: http://www.lymeinfo.net/... http://www.lymenet.org/ http://www.ilads.org/

DISCLAIMER: None of this is to be taken as a defense of the Huffington Post.

by CTPatriot on Wed May 27, 2009 at 07:29:08 AM PDT

[Iggy131313]

christiana has chronic lyme

[Christiana]

Hi Shanti,

 

Iggy is correct.  I have chronic lyme.

 

If you need any help, just let me know.  It's one thing I'm highly educated about, unfortunately.

 

Lilu - thank you very much for the info! It's common knowledge within the lyme community and so frustrating!

 

2 good books I've read and still have can be found here...the 2nd one was really eye opening, especially when it comes to our own government...

 

http://www.amazon.com/Cure-Unknown-Inside-Lyme-Epidemic/dp/0312378130/ref=sr_1_9?ie=UTF8&qid=1372899740&sr=8-9&keywords=lyme+disease

 

http://www.amazon.com/Lab-257-Disturbing-Governments-Laboratory/dp/006078184X/ref=sr_1_1?s=books&ie=UTF8&qid=1372899799&sr=1-1&keywords=lyme+disease+lab+257

 

Someone was providing free lyme testing, but I can't remember who, at the moment.  I don't know if they still are or not though.  If you're interested in this info, I can dig around and figure it out for you.  Just let me know.

 

I hope I've helped! (hugs)

[JanCarol]

Wow, this is becoming more of an issue.  There is a big battle in Australia as to whether it is real or not.  There are other tick-borne illnesses (we have a nasty tick here called the "paralysis tick" - you can imagine the sorts of antibodies it carries!) here, and they have found the spirochetes, but doctors are refusing to treat for Lyme.  

 

Naturopaths will, but are limited - they cannot prescribe antibiotics - as to what treatments they can give you.

 

I have a friend in the USA whose "functional medicine" doctor is insisting she has chronic Lyme, due to chronic fatigue.  But her antibody tests come up negative, and she is reluctant to do a 3 year course of multiple antibiotics "just in case."

 

Here in Australia, if you think you have it, you almost have to go to the USA or Germany to get treatment for it. There is some recognition of it, but it's rare.  http://www.lymedisease.org.au/faq/

 

I wonder about a couple of treatments:  oregano oil, which seems to be good at killing c. difficile, which is a complication with Lyme treatment, and infrared heat lamps, which seem to be excellent at detoxing bacteria, and even viruses and heavy metals.  Ideally, an infrared sauna would be better, but I'm a poor mouse and make do with a single red heat lamp - 150 watts - stronger than a "reptile lamp" but you can use up to 300w, in my understanding,  I can't imagine, because the 150w is pretty darned hot - I can only sit away from it about a foot to 18 inches, and only keep part of my skin on it for 2-3 minutes at a time.  But that's okay, I have lots of acreage, I just shift to another area.  I can actually smell bacteria and yeast being burned off.

 

My interest in this is - it's another illness which can be mistaken for depression, chronic fatigue.  Additionally, if my friend does indeed have Lyme - I was there when it happened.  We spent the night by the lake watching a meteor shower in August (Perseids).  We had to hike through thick grasses and deer tick country to get there.  It was a spectacular weekend, but when we got back to civilization, we were covered in deer tick nymphs, the size of a pencil tip.  We went to the showers and spent 4 hours with tweezers going over each other as thoroughly as possible.  But they were so small, it is possible that some were missed.  

[compsports]

Jan,

 

Can your friend get a 2nd opinion?   She certainly is right about undergoing 3 years of antibiotic treatment for a just in case situation since they can have horrific side effects.

[Lexy]

Some members here have told me that what I'm going through might be wds. They feel I should have stabilized by now. That I should be checked for Lyme.

I told my new doctor who diagnosed me with withdrawal syndrome. He said it would be huge coincidence that I started having symptoms when I cut effexor in half. He doesn't think I have Lyme.

I don't know if I should still b checked but afraid of false positives, and then have to take antibiotics. Please any feedback is appreciated.

[Marta]

Lyme it's very had to get diagnosed...also in the zone of Italy where I live (north east) is very common.

http://www.betterhealthguy.com/lyme/testing

 

Laxy, do you have joints pain? Is one of tha maon symptoms

[Lexy]

Yes I do have joint pain, dizziness, lightheaded, however i put these symptoms in the search bar and many members have these symptoms. Could I be one with very sensitized cns for the reason I have been suffering so long? Is it being female and 20yr?

[Marta]

I think if you feel a little bit of correlation between the intensity of these symptoms and the change of drug dose it could be cns related and not lyme......I am 29 and during all my 20s I had high and lows of dizziness and fatigue, also before ADs. It could be also "period related". There are also "funny" conditions like fibromyalgia which can give you brain fog and joint pain. I have read that in the us lyme is very diffuse now, so maybe it is better to be tested.

Sorry if I'm not very useful. Hang on!

 

Hugs!!!!!

M.

[Lexy]

Thank you fo your concerns. Where I live lyme is not very common. I'm not the outdoor type either. I will ask my doctor again if I should be tested.

[JanCarol]

I've also heard about using colloidal silver to boost the efficacy of antibiotics.  People who cannot take antibiotics use colloidal silver to help kill infections, and it is supposedly effective against lyme.

 

The other treatment which is rampant here in Australia - probably because mainstream doctors don't or won't diagnose it - is Rife Machine therapy.  Supposedly the practitioner dials up the right frequency to kill the spirochetes, and the Rife "zaps" them, over a course of treatments.  Rife is like the #2 treatment for Lyme in Australia.

 

Sadly, there is a lot of quackery involved with Rife - and it's hard to tell the real ones (if there are any) from the fake ones.

 

In Italy - can you get to Germany? There are excellent Lyme clinics there.  There is one in particular which combines treatment with regular medicine, synergized with herbal and chinese medicine, infrared therapy, heat and cold treatments, and optimized for the best time of day for treatments.  They have incredible success rates with even cancers.  It's expensive, though.  It would be, as you'd be inpatient for 2 weeks for Lyme (more for cancer)

[sillylady]

I was diagnosed with Lyme Disease, Bartonella and Babesia (Lyme co-infections) in December 2014.  I went to see a Lyme literate Naturopathic doctor.  As Lyme disease and its co's are usually diagnosed based on symptoms he was quite sure I had it.  However, I did have the rash, then the flu-like symptoms, tingling in my head and then all my symptoms got progressively worse.  He also took about 10 vials of blood and sent them to Igenix Labs and they came back positive.  In the beginning I attempted to treat it with a very condensed Cowden protocol but reacted badly to that.  I was then put on a three month course of Minocycline and I reacted to that.  Up until just recently I haven't been treating Lyme etc. due to attempting to taper off my psych meds.  However, I have started using a Rife machine very slowly as when I went to fast I started herxing (a reaction when the bugs are dying off and dumping all their toxins into the bloodstream) and this can be very debilitating.  I have suffered horrendous symptoms and I am not sure if they are coming from the withdrawals from my meds (I was taking Seroquel, Gabapentin, Remeron, Zoplicone and Cortef) and came off of them too quickly.  I am now taking just Seroquel and Remeron and want to get off of them as soon as I can as I feel they are making me worse.  I am hoping the Rifing will be the answer as I have spoken to several people who say this is what worked for them.  I have tried a lot of different remedies for the withdrawals and so far nothing has worked.  I am in late stage Lyme Disease and don't know how long I have had it as I started suffering from severe anxiety/panic attacks when I was about 10 years old.  It was then that we would go camping for a month and I don't believe I was ever checked for ticks but was taken to a psychiatrist who put me on Dalmane due to my sleeping difficulties and left me on it.  I have suffered on and off for most of my life with these attacks and am now wondering if it was indeed Lyme Disease way back then.  It is not only ticks that carry it now.  You can get it from fleas, dust mites, mosquitos, vermin and the list goes on.  It is possibly curable if you catch it within a week or so otherwise the treatment can be long, debilitating and expensive. 

[Sheri755]

I was just diagnosed with Lyme and barbesia. This plus two years bedridden with withdrawal is almost too much.  

[Sheri755]

The pain from Lyme is debilitating. Well I’m bedridden from this or ct Effexor. Idk. I’ve now developed frozen shoulders. Can barely walk. Tendonitis is spreading body wide. 

I’m so sensitive. How in the world can I treat this and stay alive?

[GiaK]

Hi everyone. I'm starting a topic in the event that what I'm learning currently is interesting to anyone else. Given it's taken me a decade of hard work to get here I don't assume most folks here can tolerate (physically because you're in a different stage of healing)  what I'm doing at the moment but would love to connect and share with anyone that perhaps does resonate in some way with this.

 

I've been working on detoxification and clearing and opening up my detox pathways for a decade. It's been slow and rough going for all the reasons y'all know about here. Still I have slowly come to tolerate a whole lot of detox herbals etc. I am now actually responding quite well to pretty hard-core Lyme disease protocols (Stephen Buhner's work as inspiration) ... however I had sort of accidently put together half the protocol before I realized that the Lyme's folks were doing the same thing.

 

of note: I did NOT test positive for Lyme. this is not considered unusual from what I'm learning...even among folks who have it. 

So I never pursued this earlier...thing that is becoming clear however is that I have very deep pockets of  BIO-FILM with multiple infectious agents involved and for a time heavy metal too. I seem to have largely gotten the metal out...but I clearly still have some very deep and nasty bio-films that I can now treat with this modified variation of a lyme protocol (along with my own design which was happening before I connected with the Lyme community)

I have no idea if I have Lyme...I know I have infections that act like Lyme, however.

 

anyway...if anyone has experience that might help us figure out what is going on for those of us who do, indeed, remain ill a long time and also have a lot of infections. 

 

I ended up doing a post: https://beyondmeds.com/2019/02/27/detox-withdrawal/   (it has some additional comments etc)

[Noloft]

GiaK,

 

I was also suspected of having Lyme but my results came back negative as well. I do plan on getting retested with Igenex sometime in the near future, if this fatigue does not lift. Apparently the run of the mill tests you get from a GP only test you for the thre most common tick borne infections and there are 18 or so. Igenex labs tests for all the strains common to ticks. These can be done through your GP or a functional medicine practitioner I believe. Though I do not have any info  per your request, I do have some insight into Lyme and related issues from your post.

 

From my research regarding detoxification, Lyme and illness etc I have learned a few things. For one,  Lyme can and does exist in many people who don’t even feel ill, it is just lying dormant in there and waiting for something to trigger it—usually an emotional or physical trauma.  I have heard similar things regarding the Epstein Barr virus. I do not know how much of this is research/evidence based or just speculation. Even the LLMDs or ME/CFS specialists still don’t know everything (though the bad ones will claim they do). So it is plausible that you may carry one of the Lyme strains without receiving a positive test. I fee most doctors and specialists would agree that If you think you may have Lyme, you are obviously  not feeling well and something isn’t going right in your body. A Lyme detox couldn’t hurt you, in my unprofessional opinion. 

 

I have also learned from several detox specialists that the ticket to eradicating  heavy metals and Lyme from the body is to first ensure your gut microbiome is stable and that you have done significant work on gut healing protocols prior to working on any sort of heavy metal issue. Apparently chelating heavy metals and engaging in Lyme detox protocols prior to healing a bad or leaky gut or even a minority malfunctioning gut can be disastrous and lead to awful detox reactions and increased levels of sickness. 

 

in regards to biofilm, I know nothing other than it is not supposed to be inside of you, and if you have it, you are infected with something that should also not be inside of you.  At least that is my understanding. 

 

 

Hope this is of some benefit to you on your journey. I myself just started mine and wish I didn’t have to be sick but hoping one day I will learn something from this hellish experience. 

 

 

[lobster]

This is interesting,  I to had thought about lyme.  I have been bitten several times and had them removed.  Where I'm from, a large percentage of the ticks do test positive for lyme and many other things.  I was tested once,  but the test came out negative, this was a number of years ago . I'm understanding now  that the tests are fairly unreliable . This might be worth a second look . 

[GiaK]

 

Oh thank you.

 

I too have learned a whole lot about detoxification but our bodies injured as they are by these drugs resist detox and in fact go into overload which puts our bodies into greater taxation. This actually may have a lot to do with sensitivities we're in overload and so we are sensitive to everything. My issues with detox and having taxed detoxification pathways has clearly been a major cause of my extreme sensitivities.

 

And yes you have to heal the gut but when your entire body and system is broadly impacted as ours are it takes years.

 

Anyway another thing has become clear to me is that there are a lot of varieties of chronic illness that have in part strange biofilms that house chronic infections in our bodies that cannot be reached nor found by regular testing most of the time

[Blondiee1915]

Does anyone know if you can detox while still on the medications and tapering? 

[GiaK]

Absolutely. You should not do anything radical but you can start changing your diet and adding spices that help cleanse and eating real good food. That's really the place to start for everybody. One hopes one doesn't have to go further than that but if one hasn't even started that's the place to start and hope that you never have to do anything radical because it gets very complex but it probably should not start when you are on drugs I would start slow and easy with dietary changes.

[Jera]

Detoxing will def help the liver clear both the drugs and the stress hormones that are hyper regulated while we taper. 

I have lots of experience detoxing over the last 6 years of Lyme disease. 

I would take it easy as I would imagine for those of us having a tough time with withdrawal we are not good detoxers and may have blocked pathways - which can be gently encouraged. 

 

I would seek seek out a good Naturopath or Functional Medicine Dr to navigate this. 

[Altostrata]

Very sorry to say we don't know anything about treating Lyme or detoxing for Lyme here. It can be quite complex.

 

Generally, we're not enthusiastic about detoxing as it can be hard on your nervous system and body, making psychiatric drug withdrawal symptoms more uncomfortable. Unless you have a real liver disease, your liver does an excellent job of clearing toxins without interference. I wouldn't mess with it.

 

If you want to pursue Lyme treatment or detoxing for other reasons, you'll have to consult a naturopath or functional medicine doctor, as Jera suggested. If this complicates psychiatric drug tapering or ramps up symptoms related to psychiatric drug withdrawal, you'll have to work with that practitioner about that as well.

[GiaK]

No thank you I'm doing just fine on my own I left practitioners behind a long time ago. I have some friends who are knowledgeable and consult with them that's about it these days. Lyme and associated co-infections (and similar constellations of various micro-organisms) are going to be common among those of us who are ill for many years that's what I'm learning. we need to get on board with this stuff. Especially people with histories of so-called psychosis.

 

Not that that has to happen here but being aware that it's part of the phenomena in folks who are extremely ill is a good idea. Hardcore detox early on is impossible and that's part of the problem we need to learn how to do it really gently over periods of years and that's exactly what I and some others that I am familiar with have had to do. This is outside the scope of what people can even handle so I don't talk about it much I've gone pretty much underground in order to take care of myself and others who are dealing with this kind of stuff

[GiaK]

I do still talk to Prey occasionally -- he's really become a wonderful and supportive friend who hears and trusts this process -- that is priceless of course.

[GiaK]

I'm also doing better than I've done and then entire 10 years. I'm doing great this spring --- winter was rough but I've come out of it having opened all my detox Pathways for the first time in a decade and that's after relentlessly working on it.

 

Detoxication pathways get clogged up in a lot of different ways that Western medicine doesn't really understand. Mine are finally clear which means I actually understand something about this that I didn't when I started and that is a cause for celebration. 

 

So happy to be alive! 🤩

[GiaK]

Oh! Lastly if people are interested in this line of thought Stephen Harrod Buhner has written multiple books on herbal antivirals antibiotics etc. They can be found on Amazon everything he writes is fantastic. He was also interviewed by Paris Williams author of Rethinking Madness and that is at least in part on Mad in America somewhere.

 

He also has a book on Altered States and plant medicine which I haven't read but I hope to at some point. Anyway he's the most awesome herbalist I've encountered and understands a lot of our (madness) issues intuitively it seems it wasn't his background.

 

 

[GiaK]

by the way, with this sort of detox professionals are often even more dangerous then normal...they have no idea how delicate our nervous systems are. and to follow their advice would generally be catastrophic..it's fine to consult with them but any advice should be taken with a very large grain of salt there  are not people who know what is going on in our bodies and detox is not something to enter lightly

 

the safest folks to consult are ayurvedic and chinese medicine practitioners since those are two traditions that have been dealing with this sort of thing for a millenia...however, again, because of our drug injuries they've never seen the likes of us and it's best to proceed with caution and get to know our own bodies very very well...our bodies know how to proceed and will guide us...even through these treacherous waters...it's taken me a decade of mindful presence to get to this point and that, well, is simply the journey as it is for me. We are all different. I have a great friend/practitioner of Chinese Medicine. he's actually an instructor at the school here as well...very astute man...the way he helps is by listening and then telling me what the Esoteric Chinese literature says...he has no idea how to otherwise direct me...it's a friendship...and we're colleagues...he does not work with me as he does most people as he says those of us these sorts of paths are learning self-mastery. I am in agreement at this point. It ain't no easy trip.