I've had Lyme undiagnosed for about 5 years. I feel like I'm always so stressed and psychologically impaired - like I live in my own head. Often this means that I over-react and get carried away.
Has anyone else lived with this impairment? I see that this more or less makes the list of symptoms which are possibly caused by Lyme, but I'm not sure why I would continue to suffer after being on different forms of ABX for over a year.
Does anyone have any suggestions? I'm taking a number of supplements - probiotics, liver support, anti-oxidants, etc. None of these seem to really be helping me get over the hump.
Would IM antibiotics help? Anyone have any recommendations? Is it typical to have long term neurological effects? Should I expect to just "adjust"? I'm not comfortable in my own head - the memory, moood, and other effects.
Thanks for any reply.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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Im 26 and have had undiagnosed lyme for around 8 years at least. I understand the symptoms you describe because i still feel that way most times. It gets worse a week before my period where its just easiest if I keep myself away from people in general. Very irritable, moody, quick to get hurt feelings or overreact. The up-swings are minutes apart from down-swings and I feel like a big yo-yo, and it sucks because i even know *why* and I still can't stop it at times.
I know it comes from a hormone imbalance compliments of Lyme/Bart (not sure which one or both?) I just started antibiotics this week. It's a week before my period now and I'm not doing terrible. I was, but then I took a dose of Pulsatilla LM4 (suggested by my homeopath) and I'm doing alright now.
Homeopathics, for me, have helped a LOT with my mental front. They've even helped with my bad dreams. There isn't a lot of scientific studies out there and the treatments are really tailored to each individual as a person...but if it sounds like something that speaks to you, perhaps you could look up classical homeopaths in your area or go to www.abchomeopathy.com and post your issues.
Not sure what else would help, so i will be looking for answers on this thread too...best wishes to you and you are not alone
Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Hey Hause. It's just hard to know. Since you suggest that you've been sick for 5 or more years, it may take you more than a year to reach some kind of comfort zone health wise.
IM abx are not necessarily more effective than oral but may knock down your infectious load a little faster.
The toxins from herxing can really mess with the CNS. Since being sick, I have had to deal with a lot of uncharacteristic anxiety. Sometimes I don't notice it and other times I just suck it up. I'm not a big fan of adding in psych meds.
You may want to try stepping up your detox strategies and making sure you're bolstering all important nutritional areas...vit D, Bs, mag, fish oil, etc.
Also do a complete hormone workup if you can. See where everything is at...cortisol, thyroid, sex hormones.
Without knowing your med history, you could consider trying a different combo.
Check out Dr. B's guidelines for good med choices, such as high dose Amoxy with probenecid.
Good luck.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
If your antibiotic treatment is inadequate, your symptoms will not go away.
I had undiagnosed lyme disease for 10 years. Then, I got lousy lyme treatment for 2 years. I got rid of some symptoms under the lousy treatment, but I also got new, horrible symptoms.
Then, I switched lyme doctors. Under my new doctor, I never got any new symptoms (except very briefly when herxing) and I got rid of all--spelled ALL--of my lyme symptoms.
I have now been symptom free for 6 years. I completed my lyme treatment 5 1/2 years ago. I stayed on meds for 5 months past the symptom free point.
I am totally normal.
In my case, I had to change doctors and get one with a lot more expertise. In my experience, many lyme patients have to do the same to get rid of all of their symptoms.
I have found that many doctors treat lyme disease but not many know how to get rid of it for a person.
So, I recommend that everyone go to a doctor who has gotten rid of lyme for at least 3 people that they know of. That's how you know they know how to cure people. You can get this kind of info from lyme support groups.
Lyme is a very complex illness. That's why it takes a doc with a lot of expertise to get rid of it. It takes a doc many years to develop this expertise. The more experience, the more the doc knows what to do in a case like yours.
There is no standard treatment for lyme disease. Like, do X, Y, and Z and you will be rid of it. So, a lot of treatment is just trying things to see what makes the patient improve.
If your doc has no more tricks up his sleeve to help you, it may be time to find a new doc.
I and all of my friends got well by going to docs who follow the Burrascano Lyme Treatment Guidelines found here:
I recommend that every lyme patient read and STUDY these guidelines. Then, you will be able to evaluate your lyme doc's treatment of you.
If you just sit back and wait for the magic to happen, it may never happen.
If you study Burrascano, you will be able to evaluate the dosages of the meds your doc has put you on. Are they as high as Burrascano recommends?
You will also see that Burrascano recommends combinations of antibiotics--not just one at a time. It takes combinations to kill the lyme in whatever form it turns into (spirochete, cyst, etc.).
Until I got to a doc who put me on 2 lyme meds at one time, I did not get better. My new doc put me on flagyl for the cyst form of lyme and amoxicillin (with probinecid) for the spirochete form. That's when I began to make progress.
Also, notice that Burrascano says you must test for and treat all coinfections that the patient possibly has. My new doc did this, and I found out I had babesiosis and bartonella along with lyme. So, he treated me for all 3 diseases. That's how I got well.
Without you giving details of your treatment, we cannot evaluate whether or not it meets the Guidelines. If you want to send me these details privately, I will compare them to Burrascano for you.
There are also things you can be doing that hamper recovery--like drinking and smoking, not resting, not doing exactly what the doctor says to do, etc.
So, there are many, many reasons why you may be continuing to suffer even after 1 year of lyme treatment.
All of my mental problems--memory, word finding problems, derealization, strange moods, etc. all went away with good lyme treatment. And, it didn't take that long. But, everyone is different in the amount of time it will take. Still, with good treatment, you can expect that all of the mental and neurological effects will go away like they did with me.
It is good that you are asking questions. Study the Burrascano Guidelines and see if they provide answers for you.
We are also willing to help you here. Wish you the best.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
So it really is possible to get better......I have really been feeling blue lately about all this crap and I have no patience anymore. I am praying for answers when I go to llmd in Feb.
Posts: 16 | From Wethersfield,CT | Registered: Sep 2010
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Neary, yeah it's one big patience tester for sure. Hang in there.
I've had stretches where I'm feeling pretty good only to sink again so lyme can be a real tease.
Good luck with your appt. Let us know how it works out.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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