posted
So I was doing ok after 28 days of treatment for lymes then like a couple months later I went out had a good time but drank alot and got pretty sick. A couple days later and I feel like my symptoms for lymes are back. My doctor is out for a while and all I want to know if this is normal or what? I'm worried.
Posts: 11 | From Burlington County NJ | Registered: Apr 2010
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posted
You were only treated for 28 days? Were you bitten by a tick and treated immediately? If not, that 28 days was most likely not enough.
Alcohol intolerance is a symptom of Lyme Disease. I would go see a Lyme specialist and nip this in the bud before you get really sick from it.
Most doctors think 28 days of treatment is enough, but it's not. www.underourskin.com
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- I'm shocked that your doctor did not tell you this, but lyme patients are not allowed to consume any alcohol. Yes, your reactions are typical. Be sure to avoid all alcohol until you are much better - that could be 6 months to a couple of years, depending on how long you've been ill, etc.
You also REALLY need to get on some good liver support (explained in links below).
It sounds like your doctor did not tell you to avoid alcohol. But, also of great concern is that you seem to be saying that you stopped treatment early - after just 28 days.
Treatment should last at least 30 weeks, according to some LLMDs (lyme literate medical doctors).
Was your doctor an ILADS-educated LLMD? Is there another doctor you can see?
Another note, if your doctor referred to it as "lymes" it is highly likely he's never really studied it as there is no "s" on it. Just Lyme (for spelling) but often, not just lyme for infections.
Were you also assessed for other tick-borne infections?
I'm sorry that you find yourself ill again - and it will take much more effort now but it is still possible to get better.
You need a better doctor, though. I think your past one did you several great injustices with neglect in education about self-care and the treatment offered. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- * This explains WHY you need an ILADS LLMD or ILADS LL ND (naturopathic doctor) to guide your treatment protocol.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - 2007
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
". . . If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided. . . ."
IGENEX -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Andy,
glad to see you have posted in "Seeking a Doctor"
Good luck to you. Take really good care of yourself, now, okay? It will be worth it. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Alcohol intolerance=bad sign. Please get to an LLMD asap before you get more symptoms!
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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quote:Originally posted by sickpuppy: [QB] Alcohol intolerance=bad sign. Please get to an LLMD asap before you get more symptoms!
Agree!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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map1131
Frequent Contributor (5K+ posts)
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posted
One will learn what is and isn't good for their healing. Drinking is just not worth it. My drink of choice is water. Sounds boring, but my body appreciates it.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Keebler
Honored Contributor (25K+ posts)
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posted
- Yogi Tea Chai Green is my new love - it can be hot or cold and I still love it. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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BoxerMom
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posted
Make mine a very dilute Acai juice, please!
Or a D-ribose lemonade.
What is the mechanism behind the alcohol intolerance? Liver related?
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Unfortunately drinking large sums of alcohol is absolutely the worst idea. Surprisingly, a lot of younger Lyme patients who I work with don't believe me when I give them this advice. They think I'm being "too strict, to....straight edge" -- so I tell them "Do what you want man, it's your body."
They come back later desperately begging me to help them, their symptoms are out of control and they don't know why.
I ask:
"What were you doing this last week or two?" "Did you do too much physicially? No. "Did you experience too much stress, family issues, school, relationships? No. "Did you get enough sleep, drink plenty of water?" Yes. "Did you drink any alcohol or do any drugs recently?" "Yes."
OMG, that's it, I was out drinking and the symptoms came on almost immediately the next couple days afterwards. The next day I felt like I was dying, I felt so hung over, but the feeling never passed!
Duh.....bingo, I told you not to drink alcohol, now the consequences are you've flared up and will likely stay that way for awhile, especially if you're not taking your antibiotics as prescribed.
"But I'm sick of taking meds, blah blah blah."
Suck it up, take your meds. You won't recover if you try to act like your life was the same way it was before you were infected.
While this may not apply directly to the thread starter, it gives you an idea of what I see and deal with. It also demonstrates what alcohol does to most patients.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
I attribute my alcohol intolerance to brain inflammation.
No one had to tell me, it became really obvious I simply could not drink! I've treated for years now and have gotten to the point where, when I feel my body will accept it, I have a little wine or scotch or something. It's nothing like it was when I was ridiculously lyme induced.
Now the brain inflammation seems to wax and wane like everything else and there are times I can drink a little and times I know I can't.
posted
For me I think it's liver. I know I still have toxins after dealing with Lyme and company, mold, meds, etc. Some days I can have a couple drinks, usually wine (I feel at least with red wine there are some health benefits and I still get the enjoyment of social drinking, but only have TWO glasses at the MOST).
I can do this about once per week at the most.
Kombucha is cleansing to the liver, and I always am craving kombucha afterward and feel great with the kombucha. I also drink lots of water as alcohol is dehydrating.
I didn't drink at all, ever, when I was sick and treating. Never.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Starfall1969
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posted
My sister-in-law keeps telling me to drink half a glass of wine before I go to bed to help me sleep.
I have had noting but negative reactions from any antidepressants/anti-anxiety/sleep aids prescribed for me, and I keep thinking about taking her advice.
Would half a glass of wine have a negative effect, do you think?
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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posted
You know, part of what keeps me only drinking tiny amounts is that wine brings back some of the feelings of Lyme. Not that it's brining the Lyme back .... I don't enjoy the feeling you get after a couple glasses of wine because it's too much like the brain fog I had with Lyme.
Then the fatigue (what others call "relaxed") that is caused by drinking reminds me of the Lyme fatigue.
I love the TASTE of alcohol, so I will have some wine when we're out to dinner. Then the kombucha when we get home snaps me out of the fatigue and brain fog (the normal kind you get from alcohol).
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lightparfait
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posted
Toxic liver from the other toxic load we all carry allow this to happen for those who have or had lyme symptoms. Learn techniques to keep your liver and kidney clear and functioning or what you cantake to counteract the occasional alcohol consumption.
Posts: 1009 | From NJ | Registered: Aug 2009
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Starfall1969
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posted
Thanks painted turtle.
I figure it can't be as bad as what the drugs do to me, and I'm not looking to get drunk, just enough to help me sleep.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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Keebler
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posted
- Q: "Would half a glass of wine have a negative effect, do you think?"
Absolutely, it would have a terrible effect. Absolutely terrible.
It's a total myth about alcohol helping with sleep. It may make someone doze off, but the quality of sleep is terrible and early awakening around 3 am is typical due to the liver stress.
Alcohol is not just bad for the liver but for the brain. No one is going to get better if they drink alcohol. So, take your pick. A chance a getting better or a shot at a chemical bath for your brain cells and liver.
Add to that the effect of alcohol on medicines or supplements. It changes the chemical nature of anything we'd take. Therefore, the meds don't have a chance of working right &/or their toxicity increases - adding even more for the liver and kidneys to work out.
posted
Keebler, I don't see how a half glass of wine can be that much more terrible than some of the pharmaceuticals Americans are shoving down their throats. No offense but honestly, it probably much healthier than xanax if used medicinally to help get to sleep. (Some people, some stages of lyme disease and treatment -- don't think it applies to all)
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Look at the health of most Americans. It's a very dire situation. Very few are really healthy - and popping any kind of pill with alcohol is taking a toll on many. It's even taking a toll on our waterways.
(Xanax is not very good on the body, either. But, if absolutely the only med that helps, there are at lease some support measures to help. There is nothing that can protect an infected and weakened body from alcohol's caustic effect.)
Yes, it applies at all stages of treatment. There are no "get out of jail free" cards with lyme. "No alcohol" means "no alcohol" - there are reasons. Good reasons. Treatment failure is common for lyme patients. The very best self-care does make a difference - every day.
Spirochetes do not take off on birthdays or holidays. Spirochetes are waiting for us to do that so they can party hardy. Nothing feeds spirochetes (or any infection) faster than alcohol. Spirochetes LOVE alcohol. And then they are stronger to more torturously destroy us. Alcohol is instant rocket fuel for spirochetes.
No doctor, no patient is saying this to be mean but it is a fact that treatment failure is a huge problem. For any patient to lessen their chance of success by drinking alcohol at any time during their treatment/recovery puts them at a much higher risk of never - ever - getting well.
Even just from the aspect of the increased porphyrins from alcohol. It's not a matter of giving up a day or two to recover from a drink - excess porphyrins are often a result of even minimal alcohol consumption - (especially for those whose livers have a stressed Cytochrome P-450 liver detox pathway as many lyme patients do).
Even just a few sips can trigger a cascade of events much like that with MCS - multiple chemical sensitivities (also connected with porphyria) where exposure to a just a whiff of diesel exhaust - or even a synthetic perfume - can do them in for a week or more and, sometimes, with damage that does not heal.
Excess porphyrins kill cells. Period. There is no getting over the hangover in that regard. Often nerve cells - all over the body, including those in the brain & liver - are destroyed or scarred. Scarred organs cannot help us get well. This is never something to be taken lightly.
While there are likely dozens of effects of alcohol on those with stealth infections, a huge consideration is that of diabetes. Lyme patients are at a much greater risk of developing diabetes.
We are told to avoid simple, refined sugars. Alcohol is nothing short of a vast rush of simple sugar that a sickened body just can't handle all at once like that - and it can eat away at the stomach lining which is already compromised with lyme and candida (which is also fed by alcohol).
Alcohol plays havoc with the high and low blood sugar roller coaster effects which, even in absence of full blown diabetes, can have immediate and long-lasting effects, including but not limited to matters discussed in this book that highlights lyme and Cpn (another stealth bacteria): --------------
posted
Thanks all. After my treatment a week later I went to western blot. It showed up negative and I wasn't really feelin bad either. Unfortunately for me I'm having trouble finding an LLMD with amerihealth.. I've on the phone alot in the past few days because I want to treat this ASAP unlike before. I'm just worried because the tingling sensation is not going away and the ER says I'm fine.
Posts: 11 | From Burlington County NJ | Registered: Apr 2010
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posted
as for "other tick-borne infections" I didn't know there was a such thing. could also explain why i've been going to the Urologist
Posts: 11 | From Burlington County NJ | Registered: Apr 2010
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Keebler
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posted
- Andy,
Yeah, I remember how my hear sank when I learned that lyme rarely traveled alone and that the other TBD (tick-borne diseases) could be equally bad and even worse in tandem.
That is why so few doctors really understand the complexity of "lyme" - it's usually so much more.
I see that you posted in "Seeking a Doctor" and you got two PMs with suggestions on April 2nd. Have you been able to schedule an appointment yet with an ILADS-educated LLMD ?
Have you connected yet with your area support group(s) for LLMD suggestions, lectures, literature sharing, etc.?
Links to articles and books posted way above will help explain much more. It is extremely important to read all of that - and get Dr. S's book and the DVD of UNDER OUR SKIN, too, as they explain so much that would be impossible to share in the space here. Those are a cornerstone to your education from here forward.
So sorry you've landed in this course of study but the only way out is with a good LLMD, excellent self-care and building a good knowledge base.
Find your Support Group -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Starfall1969
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posted
Well, nothing else I have tried for sleep does any good, and in fact makes things much worse.
I am STILL suffering the effects of 5mg of Elavil from last Friday.
Didn't help me sleep and launched me into non-stop panic attacks, which by the way, are keeping me from sleeping.
Seems like the only tihng going to put me to sleep is a shotgun blast to the head, or taking a full dose of Elavil. In either case, I won't be waking up at 3am or ever.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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posted
Ok So I contacted a bunch of infectious disease doctors and ask them if they were lyme literate. Earliest Appointment is 29th.. hope I can hang in there till then.
Posts: 11 | From Burlington County NJ | Registered: Apr 2010
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Infectious Disease doctors saying they are Lyme Literate? Shocking.
Unless they're on my list, I bet they aren't Lyme Literate. Contact me for a list. Let me know who you setup your appointment with. Chances are I've heard of them (and it's probably not good news if they're an Infectious Disease physician working in New Jersey).
I highly recommend you read Keebler's posts as well as take the time to read one link at a time that she posted. It's really important that you do at least one at a time.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Andy,
You have no idea how many thousands of lyme patients have nearly lost their lives due to ID doctors. Once in a blue moon you will find one who is ILADS-educated.
But, I have to say that after all those links, for you to call ID doctors is just perplexing. We are trying to save you from their ignorance.
Did you really get to read some of those links above?
Please read this entire article, not just the excerpts:
* This explains WHY you need an ILADS LLMD or ILADS LL ND (naturopathic doctor) to guide your treatment protocol. It explains the IDSA system for not treating lyme, for ignorance, for loss of life.
Starfall......ouch. Don't go and do that! I know how you feel. I spent around two, maybe three, years where I was never asleep. I did not drink when I was in dire straights like that, as far as I remember. It is definitely frustrating beyond measure, maddening even.
Things do improve with time. Unfortunately, for many.....a bit of a long time.
posted
I guess I should post another topic to search for doctors. This is already freakin me out. I can't go to certain doctors because the ones that are ILADS LLMD won't accept amerihealth. Why is it so hard to get this info?
Posts: 11 | From Burlington County NJ | Registered: Apr 2010
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Keebler
Honored Contributor (25K+ posts)
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posted
- Most LLMDs do not take any insurance. That is because most insurance companies will not cover the length of the appointments required to properly assess and treat patients.
Some regular doctors are actually paid by insurance companies to turn away lyme patients. If they promise not to diagnose lyme, some even get a bonus from insurance companies.
posted
thanks for all the info even though I've been a pain. Its just, I thought I was over this nightmare and its starting all over again.
Posts: 11 | From Burlington County NJ | Registered: Apr 2010
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METALLlC BLUE
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posted
quote:Originally posted by andyc210: I guess I should post another topic to search for doctors. This is already freakin me out. I can't go to certain doctors because the ones that are ILADS LLMD won't accept amerihealth. Why is it so hard to get this info?
I know this is a very difficult thing, but if by chance you really can't find one who accepts your insurance you're going to have to bite the bullet like all of us and pay-up. Better to pay now than later, because either way you'll be paying if they don't accept the insurance.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:Originally posted by andyc210: thanks for all the info even though I've been a pain. Its just, I thought I was over this nightmare and its starting all over again.
You definitely haven't been a pain. Lyme is the pain in the *** here!
We'll help as much as possible but like I said, you're going to have to call everyone on those lists I gave you (The ones who you think might be helpful), and find out who will and won't help you.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Unfortunately, most LLMD's won't accept insurance.
Also, a Western Blot cannot tell you if Lyme is active. It's an antibody test, so it shows that you have/had it, but can't show whether it's gone.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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BoxerMom
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posted
I know this sounds crazy, but let go of the need for insurance to pay. You can mess around with doctors "in network" for years and never get well. Horrifying as this sounds, some standard treatments can make you worse.
Beg, borrow, try not to steal, the money for treatment with a legitimate ILADS doctor. You'll get through treatment faster, and life will go on.
My husband's story is like yours. He had to beg for 30 days of treatment after his initial infection. He recovered, was fine for 2 years, then backslided for the next 9 years. Doctors would not treat him because he had already treated for Lyme.
Now he's with an ILADS doctor and treating properly, for unresolved Lyme and co-infections.
Be smart. Do it right the first time.
Good luck. You are never a pain on LymeNet. Learn from our hard-earned experience.
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