posted
I've felt so sick for probably close to a week now. I'm just over a month into abx, and feel definately worse.
These flares are worse than they were prior to abx. I'm guessing maybe I'm in a herx.
My LLMD mentioned something about many lymies herx every 4 weeks?
Also I've read in Dr. B guidelines that week 4 is often the worse week in treatment for some unknown reason. Has anyone else heard of this?
Today my tongue is so painful!! This is one of my most mysterious symptoms... it feels scorched and tastebuds are totally englarged and swollen on tip.
I've showed my dr's and they can't explain it. Also today I've been having really bad shin pain and my neck and spine are killing me among with all the other miserable everyday symptoms.
I've broke down twice today and cried. I haven't cried in a long time, but I'm so sick and it's so upsetting that I'm not getting any better.
I had a few days a few weeks ago where I felt close to normal, but it seems those days are def not anywhere near.
I hate being Debbie Downer... but seriously, when does it end? Will it ever?
Also I'm concerned about the level of care I'm getting. From what I've read most LLMD are much more thorough than mine.
I don't know if it's because I'm in the UK it's different or what? My dr's aren't monitoring anything... no liver checks, no blood tests.... nothing. I'm not a dr, but shouldn't they be?
I know that lyme can effect practially all body functions/ organs so shouldn't they be making sure that it's not screwing with that?
My heart hearts, and I keep getting these horrible attacks that mimic low blood sugar (but clearly aren't as they don't go away after eating) but I think has to do with my adrenal function....
I don't know....should I call my LLMD?
Sorry to ramble on and on... but it's definately been one of those days....Thank you all so much for your help and support.
this is tough advice to give out but don't drive yourself nuts this sounds like a major herx and there is not much to do but ride it out.
i have the low sugar thing on adn off as well. the one thin gi have learned about herxing is that you can make it much worse by getting anxious and obessing about what it is.
you will learn what many of us know that when it is going on it is hard to think it will every end. It will though and in the meantime find something to do that keeps your mind quiet(watch a movie, listen to music)..
Just my two cents..this is what works for me.
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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posted
It sounds like your symptoms are not just lyme. Have you been tested for the co-infections? Bartnella, babesia, erchilchia, and then there is a new test called the Fry test that tests for a common protoza that has been found in chronic lyme patients.
Of course if your in the UK I am not sure if you'd have access to these sorts of tests and the Fry test just came out in March and is not FDA approved. That being said they literally put your blood on a slide with blue die and you can see what you actually have going on. For example I have never tested positive for Bartneolla but you can clearly see it on my cells in the color picture he send s you. It's pretty cool.
I suspected for years that something besides lyme was going on with me as I was having mysterious symptoms as well and you just need to keep pushing. I saw an auto immune specialist and was tested for every single disease out there. But she didn't just test the disease but certain aspects within the test. For example you can do a C4 test to measure inflamation in the immune system but she also measured the c4a which is a compoment of that c4 test and turns out I was normal on the c4 but 20 x's the normal rate on the c4a. Another example is thyriod. My thryiod test was normal but my thyriod antibodies were 10 times the normal rate. You just gotta keep pushing doctors to test more specifically.
As far as getting well. This disease is tough. I am 5 years into treatment and on some of the most difficult abx I've ever taken. I feel like crap all the time but I stopped all treatment for 6 months about a year ago and went into a complete relapse. You have to remember that a year or two or five to get back to functioning for the rest of your life is worth it. You can do it, but take it one day at a time.
Good luck
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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posted
I get tongue pain too, it can be pretty awful. What helps me is strict avoidance of fruit, and any dietary item that reduces gut transit time.
Posts: 727 | From USA | Registered: Mar 2006
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
It will get better but it is slow going.
I would try a pinch of salt for the really bad
heart symptoms. It worked for me. Keep electrolytes
going. Since you are killing them off you are
losing cells and with them the electrical
conduction system will get off. Electrolytes will
help with this. A pinch of salt is good for nausea and vomiting herx too.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Are you in the UK or Ok? I'm not clear which it is.
If you're in UK is it a european borrellia infection?
Posts: 2675 | From ct, usa | Registered: Jan 2004
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Ask your doctor if you can take an abx break for a few days or even cut back. . Some forms of Bb grow every 4-6 weeks, there are also strains that grow all month. Herxing is different for everyone, but can be prolonged and go on and on unless treatment is tailored to avoid hard & prolonged herxing
Herxing is toxins from bacteria die-off overwhelming the body and they need to be detoxed.
Pulsing abx or lower doses can help. Also ask about detoxing w/detox baths, infrared saunas, activated charcoal to name a few.
gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
kar,
i do hope you are feeling better soon. lots of good advice here. pains in the chest is pretty common with lyme, but you may want to get it checked out.
besides having herxes, the tongue thing could be yeast. mine always burns as soon as i cheat and eat carbs and sugar.
are you taking a refrigerated probiotic and replenishing often?
if so you could bump it up a notch, (high culture/high strain) taken at bedtime and several times a day, 2 hours away from abx and supplements can be helpful to replace good bacteria.
and add an herbal antifungal such as olive leaf, grapefruit seed extract, oregamax or fungal defense in your protocol to kill yeast.
detoxing can surely help the die off it seems you are having which is causing you to feel horrible.
wishing you some relief soon. Posts: 1127 | From atlantic city, nj | Registered: May 2008
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posted
Thank you all for your support and help! Today I'm feeling a tad better. Maybe the herx is ending...I can only hope.
dmc: I am currently in the UK due to military orders, but I began getting sick when we lived in OK 2 years ago.
gemofnj: I am taking a good refrigerated probiotic, and not sure if my tongue issue is yeast related. I had the problem before I started abx. Plus I have no other signs of yeast. Can you have it and not have full symptoms?
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