This is topic Opinions wanted. in forum Medical Questions at LymeNet Flash.

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Posted by TimmyG (Member # 47522) on :
Hey all,
I was diagnosed with Lymes this January, and was put on doxycycline for a period of 40 days. I have felt no improvement at all and still experience the symptoms on a regular basis. I get frequent fatigue, headaches, joint pain, brain fog, irregular heart beat, tinnitus, so on and so forth (the list goes on) I have been off the anti biotic for about a week, and just got back from an infectious disease specialist, who told me that any symptoms still occurring must either be psychosomatic, or a result of another condition. I'm at my wits end. What do you think I should do?
Posted by poppy (Member # 5355) on :
Well, this is a familiar story. Many before you have been down this path.

Do you have any idea how long you had it before you were diagnosed? If you didn't have a known tickbite, when did the symptoms start? You may not have recognized them as symptoms though. Since you may have had this for a while, a short term treatment isn't going to fix it.

The ID specialist doesn't know what he is talking about. Drop him and never go back or tell him your plans now. Find a lyme specialist. Contact support groups in the state and post on finding a doctor forum here.
Posted by Brussels (Member # 13480) on :
Infectious disease doctors know nothing about lyme, unfortunately. You can travel to any other country, they will tell you you got post lyme disease.

Meaning, that you are IMAGINING all your symptoms and rather go to a psychiatric doctor instead of trying to eliminate infections.

We all have been through your shoes. You got to find the right lyme literate doctors.

You can buy Buhner's book on herbal treatment of lyme disease and start treating yourself WHILE you still look for PROPER help. They exist, but not in conventional hospitals.
Posted by Judie (Member # 38323) on :
A person can be infected with more than Lyme and doxycycline won't treat all of them.

Coinfections are frequently ignored and not tested.

Lyme my have been under treated too.

Thread on what else to look for:
Chronic Fatigue Syndrome - A Roadmap for Testing and Treatment

Also, there are plenty of good, Lyme doctors in the New York area. Time to get another opinion.
Posted by TimmyG (Member # 47522) on :
Thanks guys!
So I believe I've had Lymes for well over a year if not two. I'm a farmer, and unfortunately get ticks frequently, so it's hard to remember or to know exactly when it happened. But I started having symptoms about a year and half ago. Mostly memory issues and feeling stupid. I think my IQ has probably drop 20 or 30 points. Also my energy level dropped dramatically. But it happened gradually so as I declined I didn't really notice. now I'm having heart issues, random rapid pulse, which also causes anxiety. I also have frequent joint and back pain and headaches. Also I dunno if it matters, but I'm 26.
Posted by me (Member # 45475) on :
I'm very sorry you are going through this, and you're not alone with what you've been dealing with. You found a wonderful support network.

I recommend you see a LLMD (Lyme literate MD) as soon as possible. Doxycycline alone will not kill the bacteria. Lyme is a very complicated disease, and educating yourself is of utmost importance.

Dr. H's book, "Why Can't I Get Better?", is an excellent place to start.

Do you know of a qualified LLMD? If not, let us know and we can send private messages with recommendations.
Posted by poppy (Member # 5355) on :
This is late stage lyme because it has been more than a year and you have neuro symptoms. What that means is that you should be prepared for longer term treatment.

Lyme docs typically are booked out ahead and a long waiting list. Start locating docs the way I suggested above, and then call, making sure to tell them to keep you in mind for a cancellation so you might get in sooner.

Be sure to check with support groups.
Posted by TimmyG (Member # 47522) on :
Just posted in the Request an LLMD section. Thanks! And I also just purchase Buhners book.

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