☼ LilBit: polypharmacy nightmare

[RichT]

Hi Lilbit, I’m sorry to have upset you. Eymen’s last post is full of wisdom.

 

I think the best thing you could do is follow Eymen and BreathofAir’s advice.

 

I really emphasise with the difficulties you’re in, particularly the insomnia. Just to reassure you, insomnia is not fatal although it is extremely horrible.  

 

You may not have so many separate problems to deal with as you think -  your symptoms might be from a single cause, such as your drug withdrawals. I’m not claiming to have special knowledge here, just trying to reassure you that you might not have as many issues to deal with as you think. 

 

Wishing you a speedy recovery, and sending you warmest wishes,

 

Rich

[Altostrata]

19 hours ago, LilBit said:

Bio-HPF by Biotics Research Corp (Licorice, Mastic Gum, Slippery Elm, Myrrh, Bismuth Citrate, Clove, Berberine HCl, Anise, Barberry, Oregon Graoe, Wild Indigo)

 

Standard Process Chlorophyll Complex 

 

Standard Process A-F Betafood (Organic beet (root), carrot (root), organic sweet potato, oat flour, organic dried swiss chard (beet leaf) juice, calcium lactate, rice (bran), magnesium citrate, bovine liver, bovine prostate, nutritional yeast, bovine kidney, organic alfalfa (aerial parts), organic flaxseed oil, bovine orchic extract, bovine liver fat extract, d-alpha tocopherol (vitamin E sunflower), and sunflower lecithin.)

 

Okra Pepsin E3

 

Standard Process Enzycore  (Proprietary Blend 538 mg: L-glutamine, kale (aerial parts), beet (root), and vegetarian enzyme blend (acid maltase [1MaltU], alpha-galactosidase [45 GaIU], amylase [1,800 DU], bromelain [32,880 FCCPU], glucoamylase [3 AGU], invertase [170 SU], lactase [325 ALU], lipase [230 FIP], peptidase [820 HUT], protease 3.0 [3 SAPU], protease 4.5 [4,930 HUT], protease 6.0 [1,640 HUT]). Other Ingredients: Cellulose, maltodextrin, and calcium stearate.)

 

Selina Naturally Celtic Sea Salt

 

Yes, I think we know you have gut and liver problems. Whether you have leaky gut is unknown. That means injury to the inside of the gut, which can be caused by drugs or bacteria (SIBO) or yeast overgrowth (Candida).

 

Read these for background about leaky gut and SIBO:

 

This is a good overview of leaky gut -- ignore the sales pitch from Amy Myers for another expensive supplement (like Bio-HPF, but without the SIBO-killing herbs) at the end: https://www.amymyersmd.com/2019/02/9-signs-you-have-leaky-gut/

 

Chris Kresser gives reliable integrative advice without too much of a sales pitch:

 

About leaky gut https://chriskresser.com/how-to-tell-if-you-have-a-leaky-gut/

 

How to treat different "leaky gut" conditions https://chriskresser.com/5-causes-of-ibs-your-doctor-may-not-be-looking-for/

 

Here's a test for leaky gut. It may be covered by insurance. https://www.gdx.net/product/intestinal-permeability-assessment-urine

 

It could be you have a very severe case of SIBO, leading to leaky gut. Here's a paper to discuss with your gastroenterologist.

 

Here is the Web site of naturopath Allison Siebacker, the small intestine bacterial overgrowth (SIBO) expert. Here are tests for SIBO

 

There was a gastroenterologist in my city who treated SIBO -- I had the wireless motility capsule test, which was covered by my insurance. The idea is that if your intestinal motility is slowed, which can be an adverse effect of drugs, that gives bacteria a chance to grow where they shouldn't.

 

Gastroenterologists treat motility issues. They may also prescribe a very expensive antibiotic, rifaximin (Xifaxan) to kill the bacteria, but it was found that herbal treatment was as effective, see this paper about herbal treatment of SIBO.
 

Bio-HPF is a kitchen sink of gut-healing herbs, etc. (What's missing is glutamine, which is very important.)  Problem is, some things cancel out the others. Berberine, barberry, oregon grape are used to kill small intestine bacterial overgrowth (SIBO) and can be hard to tolerate themselves.

 

I'd be careful with undenatured licorice, it can cause adrenal problems. Here's  Amy Myers's own list of supplements for leaky gut https://www.amymyersmd.com/2018/10/6-nutrients-to-repair-your-gut/ Note that it contains denatured licorice (DGL) -- not undenatured licorice as in Bio-HPF. Her list is

 

Quote

 

• 3 grams of L-Glutamine
• 2 grams of arabinogalactan
• 300mg of soothing marshmallow root
• 300mg of DGL
• 100mg of slippery elm
• 50mg of aloe vera

 

The two main supplements to heal leaky gut are glutamine and quercetin (which Amy Myers must have overlooked). You wouldn't want to add SIBO-killing herbs unless you thought you had SIBO.  At any rate, it's far safer to add the above ingredients (plus quercetin) one at a time to see how you tolerate them rather than take them all in combination. They are available relatively inexpensively at Swanson Vitamins.

 

I would return Bio-HPF for a refund and order specific supplements to try one at a time.

 

An enzyme supplement, maybe like Standard Process Enzycore but by prescription, would have been used with subclinical pancreatitis. Standard Process Enzycore contains glutamine, but to be effective, you have to take perhaps 2 gram - 3 grams glutamine per day. How much glutamine is in each dose of this supplement?

 

These enzyme supplements tend to be expensive, but it's not clear what combinations are best. If you can get an enzyme supplement by prescription from your gastroenterologist or internist, it might be less expensive if it is covered by insurance.

 

Okra pepsin supplements and salt are cheap and readily available. There is no necessity to buy fancy supplements for these. You can order them from Swanson's.

 

Also see:

 

 

[Gth27]

Hello 

I also got the fat and muscle loss and the extreme insomnia. Im very fatigued and cant do anything. My whole face changed in the last few weeks. I look very old because of the lipodystrophy in my face I think. I also got the muscle twitches all over my body. I think im in the same situation you are. My family dont believe me they think its all in my head. If you look at the propecia help forum you see a lot of people with lipodystrophy symptoms. I dont know what to do anymore.

[LilBit]

8 hours ago, eymen23 said:

Lilbit,

 

I totally emphasise and I was concerned my comments were going to put doubts into your head and make you feel like you didn’t know where to turn for the right advice. 

 

I would suggest you choose a path forward and commit to it. Posting a summary from a trip to a doctor, or functional medicine practitioner, are always likely to trigger a lot of counter-comments here, because as a community we have our own recommended way of doing things based on our collective experiences. However, we can never know everything and what will work best for everyone. 

 

If you seek the advice of more than one person, you will always be prone to receiving conflicting advice and becoming overwhelmed. If you trust in the functional medicine practitioner, then by all means trial her methods for a few months and see how they work out for you. However, if you trust in the collective knowledge and guidance of the community here, then please try and follow the advice of all of us here. 

 

Unfortunately, you are unlikely to receive consistent recommendations and direction from all of the sources of knowledge in your life. It is for you to take ownership of that final decision and to implement the plan of action that you feel is best aligned with your situation and values. Wherever possible, I recommend you always try to maintain that autonomy, even in the desperate times where a wrong turn could lead to more suffering. 

 

I completely understand and appreciate your advice!  I am glad you put those doubts there because that is important, blindly trusting a doctor is what got us here in the first place so it only makes sense that this time around I want to research as much as possible to make the best informed decision.  I am extremely grateful that you took the time to share your knowledge and experience with me.  

[LilBit]

7 hours ago, RichT said:

Hi Lilbit, I’m sorry to have upset you. Eymen’s last post is full of wisdom.

 

I think the best thing you could do is follow Eymen and BreathofAir’s advice.

 

I really emphasise with the difficulties you’re in, particularly the insomnia. Just to reassure you, insomnia is not fatal although it is extremely horrible.  

 

You may not have so many separate problems to deal with as you think -  your symptoms might be from a single cause, such as your drug withdrawals. I’m not claiming to have special knowledge here, just trying to reassure you that you might not have as many issues to deal with as you think. 

 

Wishing you a speedy recovery, and sending you warmest wishes,

 

Rich

 

Thank you Rich, you didn’t upset me, it is more the fact that I would have expected better from the FM doctor and the experience left me greatly disappointed because I suspected what everyone here is mentioning, which is why I posted in the first place.  You have been nothing but helpful and I appreciate that!

[LilBit]

Thank you so much for all of the information Alto!  I am digging through it and plan to get with the FM doc tomorrow about this and returning the supplements.  I may even be looking for a new FM doc. I just want to get on the right track and need to figure out the best way to do so, and this information definitely helps.

[Altostrata]

It would be a shame if your gastroenterologist overlooked the possibility of a serious case of SIBO or SIFO (Candida), Lilbit, but that could be too fringy for a conservative doctor. Still, you've been on so many drugs, it's not beyond possibility they affected your gut motility or changed your stomach acidity and bacteria or yeast got out of hand.

 

It seems since the gut pain diminished as you diminished the drugs, perhaps you've had some recovery of gut and liver function but the SIBO or SIFO remains.

 

Yes, you might want to work with an integrative medicine MD who uses more conventional testing methods and doesn't sell marked-up supplements. The Weil Center has a directory of its graduates https://integrativemedicine.arizona.edu/alumni_and_associates.html Texas has a couple of dozen.

[LilBit]

On 6/18/2019 at 3:43 PM, Gth27 said:

Hello 

I also got the fat and muscle loss and the extreme insomnia. Im very fatigued and cant do anything. My whole face changed in the last few weeks. I look very old because of the lipodystrophy in my face I think. I also got the muscle twitches all over my body. I think im in the same situation you are. My family dont believe me they think its all in my head. If you look at the propecia help forum you see a lot of people with lipodystrophy symptoms. I dont know what to do anymore.

 

 

This is how I feel now.  Alto, thank you for the information on the Integrative Medicine MD.   My insomnia has been at its all time worst— I can’t think straight, in a panic, mindfulness not working, I am literally anorexic, losing weight still and down to 127 lbs.  I feel I fried my brain from all the cold turkeys and drug changes and don’t know what to do.  Can’t go on like this with getting 0-3 hours of sleep a night.  Ears ringing, muscles twitching, skin burning, headaches, weakness, fatigue.... I feel like I am losing my mind and nobody is able to help.  I feel like I am on the ledge just waiting to be pushed off....

[Goosie]

I felt like that too but I have started to improve.   It’s possible.  Just hang in there.  

[LilBit]

On 6/20/2019 at 12:34 AM, Altostrata said:

 

Yes, you might want to work with an integrative medicine MD who uses more conventional testing methods and doesn't sell marked-up supplements. The Weil Center has a directory of its graduates https://integrativemedicine.arizona.edu/alumni_and_associates.html Texas has a couple of dozen.

 

I checked with the 3 in Houston.... one is not seeing new patients, one is a gynecologist and the third one was not in he office so I left a message.  I also checked for functional medicine docs and one stopped practicing and there other is out of the office until Mid July.  I am slowly starting to give up.  I feel like I am having a psychotic episode and losing touch with reality

[LilBit]

This has to be akathisia.... inner restlessness, terror, panic, anxiety, vibrating..... I seriously need help

[RichT]

Hi Lilbit,

 

I’m sorry you’re suffering so much. These are really tough times for you. I can’t give you any easy answers, I can simply tell you that many people have gone through these horrible experiences and come out the other side. I’ll be thinking of you.

 

warmest wishes,

 

Rich

 

 

[Altostrata]

I'm sorry, LilBit, it's hard to keep fighting when you're ill, but that's what you have to do.

 

What did you do with the supplements from the naturopath?

 

Did you talk to your own gastroenterologist about possible SIBO? Can he recommend someone?

 

Here's a gastroenterology clinic associated with the McGovern Medical School at UTHealth that treats SIBO https://www.utphysicians.com/clinic/ut-gastroenterology-clinic-tmc/

 

Here's a motility and SIBO gastroenterologist in Houston, Dr. Eamonn Quigley https://www.houstonmethodist.org/doctor/eamonn-quigley/

 

Dr. Quigley wrote several papers about SIBO, such as https://www.ncbi.nlm.nih.gov/pubmed/30645678

 

Not sure how valid this list might be https://www.medicinenet.com/small_intestinal_bacterial_overgrowth_sibo/houston-tx_city.htm

 

A Houston doctor who does the testing -- you might phone this office to see if they would refer someone https://www.drjayanty.com/blog.html

 

I would, of course, see if I could have a phone conversation with the doctor, to see if he or she actually treats what I've got, before paying for a visit. Be forewarned, most likely an MD is going to want to prescribe an antibiotic. (I would avoid all floxins.) But if SIBO is diagnosed, you can always say you want to try herbs first, if that's what you want to do. You can take the herbs longer than the antibiotics, to discourage return of the bacteria.

 

Here's another article about SIBO, diagnosis and treatment https://chriskresser.com/sibo-update-an-interview-with-dr-mark-pimentel/

 

A good overview https://www.medicinenet.com/small_intestinal_bacterial_overgrowth_sibo/article.htm#sibo_symptoms_and_signs

[Eastcoastgirl]

Hi LilBit ,

 

Alto directed me to your thread. I read through some of your posts and she thought maybe I could share some of my knowledge on SIBO with you. Have you had you ND test you for SIBO? This can be done with a lactulose breath test. Based on what i've read you have a lot of the signs of hydrogen dominant SIBO which tends to cause diarrhea, bloating, malabsorption, abdominal pain, food intolerances, weight loss and even depression. You may also want to have your doctor test for clostridium difficle and celiac if you haven't already. Your gut health plays a huge part in your mental health, and if you have something wrong in there it can really make things worse. I know you're going through a lot and i'm sending all the healing vibes your way. If you want to know anything more just send me a message !

[Eastcoastgirl]

1 hour ago, Altostrata said:

 

Very good to hear this!

 

LilBit could benefit from what you know about oregano oil -- he may have a very bad case of SIBO. I took oregano oil capsules myself and found them helpful.

I didn't know you had SIBO as well ! Oil of oregano is wonderful. It takes away all my pain and inflammation.. I wish I could take it forever ! I am starting with a week of allicin now and then I will reevaluate how I feel. 

[Altostrata]

KMart, thank you so much!

[LilBit]

21 hours ago, KMart95 said:

Hi LilBit ,

 

Alto directed me to your thread. I read through some of your posts and she thought maybe I could share some of my knowledge on SIBO with you. Have you had you ND test you for SIBO? This can be done with a lactulose breath test. Based on what i've read you have a lot of the signs of hydrogen dominant SIBO which tends to cause diarrhea, bloating, malabsorption, abdominal pain, food intolerances, weight loss and even depression. You may also want to have your doctor test for clostridium difficle and celiac if you haven't already. Your gut health plays a huge part in your mental health, and if you have something wrong in there it can really make things worse. I know you're going through a lot and i'm sending all the healing vibes your way. If you want to know anything more just send me a message !

 

Thank you very much I appreciate it!  I am going to have my doctor test for SIBO.

[ChessieCat]

On 6/22/2019 at 2:07 PM, KMart95 said:

I didn't know you had SIBO as well ! Oil of oregano is wonderful. It takes away all my pain and inflammation.. I wish I could take it forever ! I am starting with a week of allicin now and then I will reevaluate how I feel. 

 

I've moved the above post from KMart's topic and just wanted to make sure that you see it because it ended up before your last post.

[Eastcoastgirl]

3 hours ago, LilBit said:

 

Thank you very much I appreciate it!  I am going to have my doctor test for SIBO.

Crossing my fingers for you ! 

[LilBit]

On 6/21/2019 at 8:42 PM, Altostrata said:

I'm sorry, LilBit, it's hard to keep fighting when you're ill, but that's what you have to do.

 

What did you do with the supplements from the naturopath?

 

Did you talk to your own gastroenterologist about possible SIBO? Can he recommend someone?

 

Here's a gastroenterology clinic associated with the McGovern Medical School at UTHealth that treats SIBO https://www.utphysicians.com/clinic/ut-gastroenterology-clinic-tmc/

 

Here's a motility and SIBO gastroenterologist in Houston, Dr. Eamonn Quigley https://www.houstonmethodist.org/doctor/eamonn-quigley/

 

Dr. Quigley wrote several papers about SIBO, such as https://www.ncbi.nlm.nih.gov/pubmed/30645678

 

Not sure how valid this list might be https://www.medicinenet.com/small_intestinal_bacterial_overgrowth_sibo/houston-tx_city.htm

 

A Houston doctor who does the testing -- you might phone this office to see if they would refer someone https://www.drjayanty.com/blog.html

 

I would, of course, see if I could have a phone conversation with the doctor, to see if he or she actually treats what I've got, before paying for a visit. Be forewarned, most likely an MD is going to want to prescribe an antibiotic. (I would avoid all floxins.) But if SIBO is diagnosed, you can always say you want to try herbs first, if that's what you want to do. You can take the herbs longer than the antibiotics, to discourage return of the bacteria.

 

Here's another article about SIBO, diagnosis and treatment https://chriskresser.com/sibo-update-an-interview-with-dr-mark-pimentel/

 

A good overview https://www.medicinenet.com/small_intestinal_bacterial_overgrowth_sibo/article.htm#sibo_symptoms_and_signs

 

Alto bless you for all of the help, you are amazing.  I see the naturopath tomorrow and plan on returning some of the supplements and discussing this with her as well as looking into the info you provided.  I started taking the chlorophyll and okra Pepsin and have not noticed a big difference yet.  Was going to try digestive enzymes next.

[LilBit]

On 6/21/2019 at 11:07 PM, KMart95 said:

I didn't know you had SIBO as well ! Oil of oregano is wonderful. It takes away all my pain and inflammation.. I wish I could take it forever ! I am starting with a week of allicin now and then I will reevaluate how I feel. 

 

I found this info on http://w-bad.org/reactions-setbacks 

 

• OREGANO OIL:  This recorded interview is an account given by a caregiver to someone with benzodiazepine injury who experienced a severe setback from Oregano oil applied directly to the skin.Note: W-BAD was also contacted with a warning/anecdote re: Oregano Oil: “Oregano oil isn’t used only for medicinal purposes, it’s used extensively in Italian, Spanish and Greek cooking so restaurant-users should beware and check with staff about ingredients. I reacted almost immediately to a dish of char-grilled vegetables the other day, unaware that it had been drizzled with a mixed Italian dressing. I now know I’ve been exposed to it several times lately, both in takeaway lunches and Italian delicatessens. They put it on almost everything, and there are also likely to be traces in other items. I’m reacting right now to a chili pepper mix the deli owner told me didn’t have oregano oil, having carefully avoided the one that did. Given the severity with which I know some people react, it’s really important that they should be aware of this.” 

[Altostrata]

I don't think you'll want to put oregano oil on your skin. But it's good for SIBO. I took it for months.

 

You can take digestive enzymes while treating for SIBO, too,

 

Did you talk to your own gastroenterologist? I would also contact the other gastroenterologists regarding SIBO treatment.

[Eastcoastgirl]

1 hour ago, LilBit said:

 

I found this info on http://w-bad.org/reactions-setbacks 

 

• OREGANO OIL:  This recorded interview is an account given by a caregiver to someone with benzodiazepine injury who experienced a severe setback from Oregano oil applied directly to the skin.Note: W-BAD was also contacted with a warning/anecdote re: Oregano Oil: “Oregano oil isn’t used only for medicinal purposes, it’s used extensively in Italian, Spanish and Greek cooking so restaurant-users should beware and check with staff about ingredients. I reacted almost immediately to a dish of char-grilled vegetables the other day, unaware that it had been drizzled with a mixed Italian dressing. I now know I’ve been exposed to it several times lately, both in takeaway lunches and Italian delicatessens. They put it on almost everything, and there are also likely to be traces in other items. I’m reacting right now to a chili pepper mix the deli owner told me didn’t have oregano oil, having carefully avoided the one that did. Given the severity with which I know some people react, it’s really important that they should be aware of this.” 

It sounds like that person may have had an allergic reaction. Oil of oregano should never be applied to the skin as far as I know. 

 

I use St.Francis Herb Farm Oil of Oregano 1:1 formula. 3 drops in water 3x a day. Oil of oregano is VERY potent, if you use anymore it will burn your throat going down. But it's a very effective antimicrobial. The reason I suggested you test first is because if you do have SIBO & you start taking herbs, you will get a die off reaction and the symptoms , although temporary can be pretty unpleasant. You also don't want to start messing around with your gut bacteria if you don't have SIBO. The test is pricey - $200.. but well worth it. It's the only way to test for SIBO aside from a duodenal aspirate which is much more invasive.

[Altostrata]

Such testing might be covered by insurance if ordered by a gastroenterologist or other MD. I had the high-tech electronic capsule motility test, 100% covered by insurance.

 

I got oil of oregano in gel caps from Swanson's Vitamins. It's true, you can feel it's potent stuff. I didn't have die-off symptoms, but my innards did feel better after a while, the pain and bloating decreased.

[RusTW]

Hang in there.im going through the same thing.Conventional medicine is reluctant to  look for sibo_ parasites and candida. If you do have one of these infections a lot of foods can set off die off without you even knowing it.. I would try the low FODMAP diet. That's what I'm doing now and it seems to help me out.

Right now I'm using oil of oregano for 3 days on 1 week off. If you do choose to use this start out at the very smallest increment because this is very strong. Drink lots of water and try to go to a sauna to sweat out the toxins

for a while there I didn't know what was happening to me until my tongue got cracks and look like it had yeast on it and I was very fatigued. At first I thought it was withdrawals but then I'm seeing skin irritation and other symptoms of a toxic parasitic body. I've had every test and scan done and nothing comes up. And of course the last test was for candida which takes 6 weeks to grow in Petri. Good luck to you and if you ever want to chat you can p.m. me anytime

[Altostrata]

LilBit, how are you doing?

[LilBit]

Honestly not well at all.  Actually, my health is steadily declining and I am beginning to wonder if I am going to survive.  I am down to 127 lbs with only 11% body fat, sleep is terrible, I am extremely weak and fatigued, and still have the digestive issues and 20 other symptoms with tinnitus flaring.  I also get suicidal thoughts and am extremely depressed.  I don’t feel like myself anymore.

 

 I have an appointment with my endocrinologist to double check for adrenal fatigue and pituitary issues and another GI doc — the soonest I could get was beginning of August — to check for SIBO and other gut issues.  Trying my best to use natural remedies to heal the gut.  Need to somehow address getting nutrients in my body until gut heals.  Going to inquire at my appointment tomorrow with the FM doc about this and see if we can order tests to check amino acids and fatty acids, and I also want to check all vitamin and mineral levels.  This has reached a critical level now.

 

i am starting to think my issues are beyond the scope of what this forum is able to help me with, as this is now falling under the realm of neurotoxicity/ toxic encephalopathy.  I know I still need to taper off of the drugs safely, but it is obvious that I am dealing with more than just withdrawal.  I have been left disabled for a year now after a short time being polydrugged and overloaded with toxins and finally having an adverse reaction, then polydrugged more and exposed to additional toxins.  I am undergoing neuropsychological testing on Friday to confirm the extent of the damage.  

 

Thank you for checking on me and for all of the help and advice you have provided.  I know Shep meant well last year recommending that I reinstate the Diazepam, but in hindsight I never should have done this.  I now have two more drugs to taper after I jump off of this Depakote and I feel that they are continuing to damage me.

 

I am thinking of tapering the Quetiapine after I am off of the Depakote, but not sure if that or the Valium is doing me more harm.  I want to taper the one which is causing more damage next, and I almost feel like I am in tolerance withdrawal on the Diazepam and it is causing me all kinds of problems.  

 

I have been doing a lot of mourning the old me lately and have been having a difficult time coping with all of this.

[Eastcoastgirl]

A FM doc can test you for SIBO, you don't have to wait for a GI doc to test you. In fact many GI docs are not up to date on SIBO and don't have breath tests on hand. They will often recommend some other test that does not accurately diagnose. Would recommend going the FM route in regards to SIBO. If for some reason you cannot find a FM doc that is knowledgable (which is unlikely) you can buy the test online yourself and have a FM interpret the results. I can also help you if you need, as i've done a lot of them the past few years. 

 

I know your issues span much further than the gut but I hope getting some answers in that regard will help you to some extent. 

 

Edited July 9, 2019 by ChessieCat
removed quote

[LilBit]

18 hours ago, KMart95 said:

A FM doc can test you for SIBO, you don't have to wait for a GI doc to test you. In fact many GI docs are not up to date on SIBO and don't have breath tests on hand. They will often recommend some other test that does not accurately diagnose. Would recommend going the FM route in regards to SIBO. If for some reason you cannot find a FM doc that is knowledgable (which is unlikely) you can buy the test online yourself and have a FM interpret the results. I can also help you if you need, as i've done a lot of them the past few years. 

 

I know your issues span much further than the gut but I hope getting some answers in that regard will help you to some extent. 

 

 

Thank you, looks like I will need the help.  I saw the FM doc today and was shocked to say the least.  She was unaware that weight loss and diarrhea can be symptoms of adrenal fatigue.  When I asked her about checking my amino and fatty acids, she responded by saying that they can be checked via bloodwork, but how would we correct if I am not absorbing nutrients?  I asked her if amino acids could be administered via IV and she said she did not know.  When I asked her about diagnosing SIBO, she said she did not have the equipment to do the breath test and she diagnosed it by doing muscle testing.  I get the feeling that i need to find another doctor ASAP.  I am disgusted and probably going to wind up dead because i am in the twilight zone where doctors who know what they are doing do not exist.

[Eastcoastgirl]

22 minutes ago, LilBit said:

 

Thank you, looks like I will need the help.  I saw the FM doc today and was shocked to say the least.  She was unaware that weight loss and diarrhea can be symptoms of adrenal fatigue.  When I asked her about checking my amino and fatty acids, she responded by saying that they can be checked via bloodwork, but how would we correct if I am not absorbing nutrients?  I asked her if amino acids could be administered via IV and she said she did not know.  When I asked her about diagnosing SIBO, she said she did not have the equipment to do the breath test and she diagnosed it by doing muscle testing.  I get the feeling that i need to find another doctor ASAP.  I am disgusted and probably going to wind up dead because i am in the twilight zone where doctors who know what they are doing do not exist.

Oh gosh, that is NOT a good doctor. If you want to message me at let me know the area you're located I might be able to find someone for you who knows what they're doing. I don't know about amino acids, but I have malabsorption and the subsequent weight loss that goes along with it. I get meyers cocktails that contain b vitamins, magnesium, calcium, vitamin c and sometimes other vitamins. I would recommended going to google and typing in "sibo testing *your city*" and "myers cocktails *your city*" and see if you can find anywhere in your area that can help you out.

[Altostrata]

I would go off the Seroquel after Depakote -- or even go off it before you go completely off Depakote -- and I would make that happen as fast as you can tolerate. I doubt the diazepam is anywhere near as harmful as the others.

 

I doubt its adrenal, endocrinological, or neurotoxicity/ toxic encephalopathy. A far more direct explanation would be that you have malnutrition from gut dysfunction. You have all the symptoms of malnutrition.

 

It was clear when you came here you had liver and kidney damage from the drugs. It's very possible the adverse effects from all those drugs affected your gut motility, leading to SIBO or possibly SIFO.

 

It sounds like your own gastroenterologist doesn't know SIBO from a salami sandwich and has been barking up the wrong tree. That FM isn't doing anything but reselling supplements. Anyone who knows a little bit about SIBO would have you on supplements by now.

I derived a lot from those links on Chris Kresser's site, such as http://chriskresser.com/sibo-and-methane-whats-the-connection  Here are my notes about the protocol I followed myself:

 

 

Quote

 

I've had the lactulose breath test for SIBO and it seems I have a mild case.... This can be treated with massive doses of antibiotics with about a 50% success rate. Naturopaths claim some success with an herbal approach.

Here are some things I'm doing before trying antibiotics:

1) Low-FODMAP diet to reduce symptoms, plus lots of fresh green non-FODMAP vegetables. (It was fairly easy for me to identify which foods cause me problems. Add in foods after a month or so.)

2) Fresh ginger and exercise for motility. (I drink tea made with thin slices of ginger and carefully nibble the ginger.)

3) Klaire Labs Interfase enzymes or lactoferrin to break down bacteria biofilm, which is where the SIBO hides. [This turns out to be bogus.]

4) Herbs to control SIBO: rotate black cumin seed oil, oregano oil, olive leaf extract, grapefruit seed extract, berberine, each for a week, twice a day. Add fresh herbs to food, as tolerated. (Do not overdo these herbs, you'll make yourself sick.)

5) Raw coconut oil and monolaurin to weaken microbes and yeasts.

 

 

I went on a low FODMAP diet and took black cumin seed oil and oregano oil, both twice a day, with a spoonful of raw coconut oil (in oatmeal) every day (coconut oil contains monolaurin, which you can also get in a capsule). I did this for weeks and gradually got better, then added in FODMAPs again. You can get all the supplements from Swanson's Vitamins, very reasonably.

 

Did you contact any of these doctors?

 

On 6/21/2019 at 6:42 PM, Altostrata said:

I'm sorry, LilBit, it's hard to keep fighting when you're ill, but that's what you have to do.

 

What did you do with the supplements from the naturopath?

 

Did you talk to your own gastroenterologist about possible SIBO? Can he recommend someone?

 

Here's a gastroenterology clinic associated with the McGovern Medical School at UTHealth that treats SIBO https://www.utphysicians.com/clinic/ut-gastroenterology-clinic-tmc/

 

Here's a motility and SIBO gastroenterologist in Houston, Dr. Eamonn Quigley https://www.houstonmethodist.org/doctor/eamonn-quigley/

 

Dr. Quigley wrote several papers about SIBO, such as https://www.ncbi.nlm.nih.gov/pubmed/30645678

 

Not sure how valid this list might be https://www.medicinenet.com/small_intestinal_bacterial_overgrowth_sibo/houston-tx_city.htm

 

A Houston doctor who does the testing -- you might phone this office to see if they would refer someone https://www.drjayanty.com/blog.html

 

I would, of course, see if I could have a phone conversation with the doctor, to see if he or she actually treats what I've got, before paying for a visit. Be forewarned, most likely an MD is going to want to prescribe an antibiotic. (I would avoid all floxins.) But if SIBO is diagnosed, you can always say you want to try herbs first, if that's what you want to do. You can take the herbs longer than the antibiotics, to discourage return of the bacteria.

 

Here's another article about SIBO, diagnosis and treatment https://chriskresser.com/sibo-update-an-interview-with-dr-mark-pimentel/

 

A good overview https://www.medicinenet.com/small_intestinal_bacterial_overgrowth_sibo/article.htm#sibo_symptoms_and_signs

 

[LilBit]

1 hour ago, KMart95 said:

Oh gosh, that is NOT a good doctor. If you want to message me at let me know the area you're located I might be able to find someone for you who knows what they're doing. I don't know about amino acids, but I have malabsorption and the subsequent weight loss that goes along with it. I get meyers cocktails that contain b vitamins, magnesium, calcium, vitamin c and sometimes other vitamins. I would recommended going to google and typing in "sibo testing *your city*" and "myers cocktails *your city*" and see if you can find anywhere in your area that can help you out.

 

 

Thanks for that, I am going to search and see if I can get SIBO testing done ASAP.  Don’t care how much it costs.  Tired of not knowing things and people guessing.  

[Danalee13]

On 8/27/2018 at 4:19 PM, LilBit said:

Another thing that scares me is that I just realized that I think I tapered the Diazepam too fast.   😢  I am keeping a daily journal of all of my symptoms.  I think if I can beat the insomnia I can at least return to work and then focus on healing myself and tapering off of the rest of the drugs.

hi @LilBit how fast did you taper diazepam? I am not a moderator but i have tapered off benzos before. I tapered very slowly and felt nothing. i almost did it too slowly. slower is better. i felt nothing. i tapered for one year. at least I did not have side effects!

also completely here for you. i am back ON diazepam because i am tapering lexapro and it is HORRID. we are all in this together @LilBit

[LilBit]

3 minutes ago, Danalee13 said:

hi @LilBit how fast did you taper diazepam? I am not a moderator but i have tapered off benzos before. I tapered very slowly and felt nothing. i almost did it too slowly. slower is better. i felt nothing. i tapered for one year. at least I did not have side effects!

also completely here for you. i am back ON diazepam because i am tapering lexapro and it is HORRID. we are all in this together @LilBit

 

Thanks.... I completely did it wrong and knew nothing about the right way to taper at the time.  I was on Ativan and crossed over to Valium which I am almost certain I did incorrectly, and then tapered off of the Valium in a month.  Then after joining here I reinstated at 2mg in August of 2018 and that’s where I’ve been ever since.

[LilBit]

Thanks Alto, just wanted to be sure because I know the Diazepam is not doing me any favors but the Seroquel has terrible potential side effects.  I know the Diazepam is going to be the hardest to taper.  I plan on doing some searching to see who can do the SIBO testing ASAP.  I reached out to Dr Quigley’s office because they take my insurance but his soonest appointment was in October.  They gave me a number to call to see about checking which provider may have a sooner appointment date.  I will look at the other doctors in the links you sent to see if I can find someone else also.  

[LilBit]

@Altostrata  I am not doing to well I am sad to say.   I have loose stools and diarrhea in the mornings still, and am on the AIP/paleo diet and trying to avoid high FODMAP foods as much as possible.  I also am still averaging 3 hours of sleep per night, although now I get sleepy most nights, which is a change.  I wake up just as tired as when I went to bed, so I know it's not restorative sleep.  I had the hydrogen breath test and it came back positive and he said I might have SIBO, so the GI wanted me to take Xifaxan like you mentioned. I am actually considering it.  Prior to that I had been taking digestive enzymes. I just recently in the past 2 days started Betaine HCL with Pepsin to see if that will help because I read that vitamin deficiencies can lead to low stomach acid which can lead to SIBO, and I know that all psych meds cause vitamin and mineral deficiencies. I have noticed over the past week my muscles are becoming very weak and sore and I have an overall feeling of malaise. I am also trying Lithium Orotate 5mg in the evenings now to help with insomnia and mood, and it's hard to tell but it seems to be helping.  This morning I just noticed the skin on the bottoms of my feet is slightly yellowish, and someone suggested this could be from eating lots of carrots/squash/sweet potatoes and could be a sign of carotenemia due to the weight loss.  I had labs done today to check for any vitamin deficiencies so we will see what they show.  When I got home earlier this evening I noticed a slight pain in my chest, increased brain fog, and now I am starting to have issues with walking, climbing stairs etc.   I also started having what resembles TMJ pain yesterday. 

 I am just not even sure what is causing the wasting/fat loss/muscle loss anymore. Could be the insomnia, could be the meds I am still on, could be SIBO or something else... I am at a loss as no doctor or practitioner I see is able to figure it out. I feel like I have tried almost everything and it is so hard to tell when something is working. The only symptoms I have that even suggested SIBO are losing weight and loose bowel movements. The weight loss is showing absolutely no signs of stopping, and on top of everything else I am experiencing rapid cognitive decline as well (lots of brain fog).

The weight loss has been going on for about a year now, progressively getting worse. I can't connect anything to it because it started about a month after my adverse reaction (August of 2018) when I cold turkeyed off of Paxil, well before I had any GI problems, and I have changed diets so many times since then and tried so many remedies, the only thing that comes to mind is my body could be in some sort of catabolic state as a result of the insomnia. I know it sounds crazy but I can't think of any other logical reason why this is happening.  I wish there was a way to confirm that what is happening to me is malabsorption and not something else.  Something unusual that stands out to me is that in the beginning when I first noticed the weight loss, I felt a strange sensation in my groin on the right hand side.  That feeling went away for awhile and now has come back as I have lost more weight.  The best way I can describe it is a feeling like something is in there, no pain or cramps though.

My case is extremely complex thanks to multiple polydruggings so it is going to take a special person who is willing to dig deep to see what is going on. I have kept a journal from day one, every single day, to try and pinpoint what might have happened and nothing stands out to me.

 

I am down to 5mg Depakote and have updated my signature.  I am seeing my GI doc and holistic practitioner tomorrow, and a new holistic doctor next week.   At the rate I am going I will look like a skeleton in a month.  If I could just put a stop to the weight loss I'd be happy.  Something is making it go into overdrive and my appearance has drastically changed, which makes me self conscious and not want to be around anyone.

 

Edited August 15, 2019 by ChessieCat
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