Stop all abx Continue diflucan and nystatin (I have bad yeast) Eat lots of carbs - all kinds (I've lost 35-40 lbs) Add fludrocortisone and hydrocortisone Add cymbalta and more neurontin, continue klonopin Add Allegra and Pepcid Add midodrine to help heart rate (which isn't high on normal days, but elevates when just putting on an oxygen mask) Add adderall in the mornings
So many drugs.... And the carbs....
Just wanted to put this out there and see if anyone had any experience with this stuff.
Posts: 748 | From Texas | Registered: Feb 2015
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posted
This is Dr. J in MD recommending this...
Posts: 748 | From Texas | Registered: Feb 2015
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
You sound like you are really sick and this is an effort to pull you back from a bad place. I doubt it is intended to be longterm. One clue is telling you to eat carbs, even with a yeast infection. At some point there is too much weight loss and that has to be turned around.
Did you ask the doc about taking so many drugs at one time? Be sure to ask questions, and not just of us here because we don't know the whole picture.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Poppy, that's pretty much it, I'm really sick and he's trying to stabilize me. I don't think I'm going to be stabilized without killing this stuff though. I definitely ask questions, he knows how concerned I am about all this. I'm pretty sure he expects this to be long-term though.
Lymetoo, that was my reaction! I'm definitely starting stuff one at a time to see what happens. Not sure how far down the list I'll be willing to get, I guess it'll depend on how my body responds. I'm so sensitive to everything.
I haven't seen too many other people with lists like this so I figured I'd see if anyone else has done anything similar.
Posts: 748 | From Texas | Registered: Feb 2015
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posted
I think the Dr is trying to stabilize you. At my sickest I had a pill for thyroid a different one for heart, one to sleep one to wake up, one for stomach, one to boost immune system, one to detoxify, probiotics, fish oil, glutathione, etc. Initially they said limit sugar and bread and milk and eggs. But I kept losing weight and by I think my next appointment they said eat anything you can get your hands on. I think you need at least herbal anti-microbials.
Something that helped me stabilize was Mepron with zithromax plus herbs and infrared sauna. Check with your doctor. Another think was getting right combination of meds to sleep. Once I was sleeping longer I began to stabilize.
Posts: 697 | From CA | Registered: Dec 2011
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posted
I hated fludorocortisone. It made me so insanely hungry that I stopped it after only a few days.
I lasted two weeks on Cymbalta .. glad I couldn't take it, actually.
Klonopin .. I would hope to never be addicted to. Nightmare to get off of. (or so I hear)
Hydrocortisone .. I wish I had never taken it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Right now I am stuffing in carbs because of too much weight loss. Still doing everything else, but at some point you have to do some damage repair too.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
See, I feel like if I just find the right abx that I could avoid some of this extra stuff. Some might be necessary, but this is a lotta pills. But I'm like you, poppy, I really do need the carbs but I hate to stop treatment while I eat them. Mlg, I really believe the antimicrobials are gonna be necessary in my stabilization too.
I KNOW Cefzil helped, but it took 9 weeks. Switched to Rocephin at that point which should've been better than Cefzil, but for me it wasn't. It doesn't make sense, so I'm having a hard time getting anyone to believe me on that. Bactrim helped tremendously too at first, and only took 3 weeks. I'd like to try minocycline, Bactrim, and Cefzil for two months straight. My heart sank when Dr. J told me to stop abx. I'll try to talk to him about it again in a couple of weeks.
I'm already hooked on klonopin (just a tiny dose), and neurontin isn't bad, sometimes it helps. I used to have to take propranolol, but my heart rate isn't a problem anymore on a "normal" day under normal circumstances. My heart rate goes nuts in the hyperbaric chamber, though, and he really wants to correct that so that I can use the chamber.
Lymetoo, I'm really interested in the hydrocortisone. What made it so bad? Also what made the Cymbalta so bad? I really don't wanna take that one.
Posts: 748 | From Texas | Registered: Feb 2015
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Judie
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posted
I got better not doing a strict Lyme diet (I just avoided sugar). Extremes don't work for everyone.
Good luck Sam! It sounds really tough right now.
I'd start with a simple carb like white rice. Rinse well before cooking. It also doesn't contain as much arsenic as brown rice.
Cortisone gave me permanent eye damage and I was only using a topical. It suppresses the immune system & makes infections go wild. It can mask symptoms and then everything comes back worse when you stop taking it.
Posts: 2839 | From California | Registered: Jul 2012
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Wow, I'm so sorry you had eye damage Judie.
I had a dream the other night that I was getting better but I went blind in the process. I thought maybe that was a sign to avoid plaquenil, but I never thought about immunosuppressing to the point of allowing the infection to cause eye damage!
Thanks for the advice on the diet! I'll try that and see how my body and the yeast responds.
Posts: 748 | From Texas | Registered: Feb 2015
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The hydrocortisone is next to impossible to get off of .. and it blocks vitamin absorption. I'm on a low dose, but would rather not take it at all. I think it makes it even harder to get rid of candida.
Cymbalta killed my stomach. The problem with that one is that it is next to IMPOSSIBLE to get off of... I am very wary of anything that you end up taking for the rest of your life.
Scary stuff .. and my gut is now a mess. I would love to turn back the hands of time.
posted
Thanks Lymetoo, I feel the exact same way. I hope to be med-free one day so I hate to become dependent on anything. I also just hate taking anything that messes with my neurological or vascular systems. I've also wondered what the hydrocortisone would do to my candida...
If only we could turn back the hands! I never would have taken prednisolone, and probably would have never known Lyme was hiding out in my body.
Posts: 748 | From Texas | Registered: Feb 2015
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poppy
Frequent Contributor (1K+ posts)
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posted
So you were on steroids before a lyme diagnosis and treatment. That sure tells us something. This is called a steroid disaster and needs a lot more handling.
Low doses of hydrocortisone are for adrenal fatigue, right? I have always heard that the low doses we take are not like the high ones, which is why they are called physiologic doses. Surprised that some here don't like it and feel that it causes trouble. News to me.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Yeah, prednisolone entire month of July 2014, very suddenly disabled in the beginning of August 2014, and dexamethasone November 2014. Dexamethasone made me much worse, but taking Bactrim immediately after made me tremendously better. This was all before my diagnosis.
Low doses of hydrocortisone are for adrenal fatigue, but if your adrenals get used to not having to make their own cortisol I guess it could be possible to get stuck having to take hydrocortisone long-term. And it does have the warning to not take it if you have a fungal infection anywhere in your body, which makes me think it may be at least mildly immunosuppressing...
Posts: 748 | From Texas | Registered: Feb 2015
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Topic: what do STEROIDS actually do to those with lyme? Risks, long term damage discussed. Links. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- There are so, so, so many other options for adrenal support.
I now have eyes of an 80-year old and I'm half that age. I have beginning macular degeneration too. I had 20/20 vision before the steroids.
Adverse drug reactions are real and scary. They change lives.
Levaquin made the situation worse.
Posts: 2839 | From California | Registered: Jul 2012
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poppy
Frequent Contributor (1K+ posts)
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posted
Judie, I was not talking about the heavy duty high dose steroids. Yes, we all know what problems they can cause. I meant the low dose physiologic doses. In fact, physiologic means matching the amount the body produces naturally on its own when systems are normal.
As for opinions on what this patient should take, we can all have our opinions, but once a person has found their way to a lyme literate doctor, be careful about second guessing them. Don't want to set a patient up for being non-compliant, when we don't know the whole picture.
OK for the patient to ask informed questions of the doc, not for strangers on a forum to countermand a protocol.
Posts: 2888 | From USA | Registered: Mar 2004
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sammy
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posted
Advice from doc:
Stop all abx Continue diflucan and nystatin (I have bad yeast) Eat lots of carbs - all kinds (I've lost 35-40 lbs) Add fludrocortisone and hydrocortisone Add cymbalta and more neurontin, continue klonopin Add Allegra and Pepcid Add midodrine to help heart rate (which isn't high on normal days, but elevates when just putting on an oxygen mask) Add adderall in the mornings
So many drugs.... And the carbs....
It sounds like you are very sick right now and your doc is trying to pull you up from that point, keep you from falling farther down.
You've explained why you are on some of these medications. Sounds like they are necessary right now, like the candida meds and the klonopin. Sounds like you are dealing with a lot of pain issues if he is prescribing cymbalta and neurontin.
Otherwise, sounds like you are having heart rate and blood pressure changes that the doctor is trying to address with the other meds.
I took Hydrocortisone for a long time, did later taper off to an adrenal glandular supplement when my doc thought it was appropriate. Never tolerated Fludrocortisone, it helps a lot of people though, works in a different way.
Also, I take Adderall every 4hrs to help keep my BP up and amazingly, it stabilizes my heart rate. It is a vasoconstrictor. It worked better than Midodrine for me.
You may need Midodrine though together with Adderall to help with your situation. For some people, it really helps. My doc just increased my Adderall instead.
In case you are wondering, no, Adderall did not increase my energy or reduce my fatigue. It may help other healthier people with that though.
Instead of Allegra and Pepcid, I take Xyzal and Famotidine. Hard to say why your doc wants you to take these... Many reasons why. I use them for the anti-histamine effects.
And carbs, you seem so worried about carbs! Everyone here is very focused on carbs. I was scared to death when my doctor told me that I HAD to eat carbs or else I would NEVER get better.
This is a very well respected doctor... Just trust that, OK. Of course I don't eat straight up white sugar. But I have to eat carbs with every snack and meal or else my blood sugar drops and I feel very sick.
I have to eat about every 2-3 hrs. Balance your carbs with protein, add veggies (and fruits) of course too for well balanced diet. Cook things in a manner that is digestible for you.
Only eat things that don't make you feel sick or do bad things to you. Just because it is good for the majority doesn't mean that it is good for you. I've had/ am having a hard time learning that.
Hope that helps in some small way to help you feel better!
Posts: 5237 | From here | Registered: Nov 2007
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CD57
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posted
mig, what was the sleeping combo that helped?
Posts: 3528 | From US | Registered: Apr 2007
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Thanks for the input all. Sorry for not replying till now. I'm just doing so bad.
Had another appointment with doc today and he said he thinks the infection is under control. But I'm still getting worse rapidly. I'm bedridden. I don't understand how he can think that the infection is under control...
Posts: 748 | From Texas | Registered: Feb 2015
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posted
Im sorry to hear about your troubles sicksam. For starters-- change your avatar name from SickSam to WellSam or BetterSam... I know it sounds silly, but the mind is incredibly powerful, and so are names.
Next I would get off the klonopin if possible by eliminating aspartame, wheat and by adding in SAMe. (SAMe is the end stage product in methylation and it vastly helps with depression in MTHFR issues-- which most Lymies have.)
I would also try to get off all the prednisone type drugs--- these lower immunity. I was given prednisone for shingles and I threw it in the trash can!!!
If you must eat carbs, then buy 15 pounds of organic vegetables, apples, beets and carrots(have lots of carbs) and greens and juice them daily. People on the Gerson program have gotten better from Lyme.
Refined carbs will only make a yeast problem much worse and will lower your immunity.
Have you thought about the Cowden protocol or the Buhner protocol? Here's a comprehensive list of all current alternative protocols:
Also find out your genetic MTHFR status at 23andme.com
Big pharma really has very few answers for us, and instead they just keep us on a very expensive hamster wheel (which is their intent)--- to rob you of your cash while further trashing your health.
I once sat in a hot tub with a Pfizer exec at a neighborhood block party--- after a few glasses of wine-- she began to tell me how guilty she felt about the abominable stuff that Pfizer does!! This should be a warning to everyone here....
My advice to is try to get off as many big pharma drugs as possible-- and add in huge amounts of fresh, unpasteurized enzyme laden vegetable juices, and to start in on the Cowden or Buhner protocols.
Posts: 696 | From New York | Registered: Aug 2006
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I now have eyes of an 80-year old and I'm half that age. I have beginning macular degeneration too. I had 20/20 vision before the steroids.
Adverse drug reactions are real and scary. They change lives.
Levaquin made the situation worse.
Excellent points, Judie-- I AM SO GLAD I THREW MY PREDNISONE IN THE TRASHCAN and didn't look back!!
Some doctors are just drug pushers for big pharma....
The big pharma shills here are fairly obvious for all to see....LOL..
Posts: 696 | From New York | Registered: Aug 2006
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
OK, wakeup, read all the posts in that thread and you will see I did not condone hardcore steroids, just physiologic doses for people with adrenal fatigue. Please don't pass on inaccurate information.
And as far as I can see there are no big pharma shills on this board, just sick people. Name calling is not nice, especially when inaccurate. Maybe 355 posts in 9 years doesn't make you a very frequent visitor to the board, or able to make judgements like this.
Are you a doctor? Can you tell this very sick patient how he should be treated? You are an anonymous poster that does not know him. Be careful.
Posts: 2888 | From USA | Registered: Mar 2004
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quote:Originally posted by SickSam: Yeah, prednisolone entire month of July 2014, very suddenly disabled in the beginning of August 2014, and dexamethasone November 2014. Dexamethasone made me much worse, but taking Bactrim immediately after made me tremendously better. This was all before my diagnosis.
Low doses of hydrocortisone are for adrenal fatigue, but if your adrenals get used to not having to make their own cortisol I guess it could be possible to get stuck having to take hydrocortisone long-term. And it does have the warning to not take it if you have a fungal infection anywhere in your body, which makes me think it may be at least mildly immunosuppressing...
Wow Sicksam---
I have heard of many people who were disabled by Prednisone-- yet Doctors pass it out like candy.! They tried to foist it on me for a mild case of shingles---- how silly is that?
Please think about finding another doctor or at least getting a second opinion from a naturopath... sometimes all these medications snowball on each other.. in addition to draining your bank account.
In short, the medical establishment does not care about America anymore, and in my opinion it is corrupt from the top..
My neighbor just got out of a one week stay in the hospital due to a witches brew of many Big Pharma medications...he almost DIED from his doctors advice. He's on 1/4 of the medicine now and looks great.
The lady above was blinded, and my husband was also blinded in one eye by his eye doctor recently. My cousin was given hormone replace therapy and she got uterine cancer..
My doctor tried to push these hormones on me, and I REFUSED.... Thank god I was able to say "no" to non essential treatment, or I would probably also have cancer. I also have a friend who spent $100,000 on his supposed MS--- which later turned out to be Lyme.. !! What an expensive mistake his doctors made....
Doctors are making lots of very expensive mistakes these days, and they still have no cure for chronic lyme.
We need to critically evaluate all medicines that our doctors prescribe.
Some doctors are given money and vacations in Hawaii to prescribe medicines... and they make extra money off more surgery than is necessary
Sad but true.
I wish you luck in your healing and I will pray for you to make the right decision for your health. Do give the Buhner or the Cowden protocol a look.
Posts: 696 | From New York | Registered: Aug 2006
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is this medicine absolutely necessary and what are the most serious side effects of this medicine and why are you prescribing it? Also ask: do you receive a monetary amount or vacation points for prescribing this medicine?
Also research each medicine ONLINE before you take it.
Just one look at all the smarmy Big Pharma commercials for erectile disfunction products on TV ought to prompt savvy people to be very picky consumers of big pharma products and big pharma motivations for "healing" you.
Doctors have been elevated to godlike status in our culture for one reason only --- to credibly SELL expensive Big Pharma drugs to the unsuspecting public.....Im not saying that their drugs are all bad or all don't work--- I'm just saying--- Caveat Emptor-- be a wise and informed consumer in this profit and greed driven medical industrial complex..
You have to look out for yourself and not be "starstruck" by a doctor. They do make loads of mistakes that can cost you your life or your eyesight or your uterus.
Your doctor is YOUR servant.
Posts: 696 | From New York | Registered: Aug 2006
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