posted
Many of you are familiar with my health issues and know that I just started treatment with a great llmd.
Our local doctor has great concerns of lots of antibiotics being used and is adament that there is something else going on with me. He admits that whatever it is, very closely mimics tick borne infections and acts very much the same way.
Can you all give me suggestions as to possibilities? What about viruses?
I got completely better once following a month of levaquin and ten days of doxy. A few days before the doxy ended everything went away, all pain, edema, fatigue, etc. As soon as the meds finished, I got sick again.
A doctor said it was an ID matter and sent me to one, but that dr was a diasaster and said if I hadn't been to a third world country I was fine. He did no labs, looked at none, had his back to me the entire time, etc.
I really believe tick stuff, especially since four doctors have said the same thing. I can believe to an extent something else is going on, due to odd symptoms and things that I don't hear other lymies having. I really wonder about viruses. I have a negative epstien barre (sp?)
Please give me all of your suggestions, input, etc! Also, have you all struggled to get pain management if you have to take narcotics? We are finding many pain drs don't use narcotics, even if nothing else works. Also finding that many drs will not prescribe but a low dose even if a person needs more, and that they will not take a complex patient.
Have you all had to go out of state to get pain management? What can be done to resolve the issue? Nobody should be bedridden from pain, when if they had proper pain management they can function at least at a low level.
I am now having trouble walking anything but very short distances and fear ending up in a wheelchair if this continues.
Posts: 114 | From USA | Registered: Sep 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I think most of us are here after being tested for everything under the sun and nothing being positive but the TBD's. I also think that it is often more than just TBDs that exist in the most complex cases.
Viruses, heavy metal toxicity, yeast, toxic exposures, etc.
On the pain management, yes our pain management system is awful. The DEA really screwed it up by prosecuting doctors as drug dealers. The American Pain Foundation is a great advocacy organization. I suggest you check them out.
I don't know how to find a good pain doc though. I've been lucky in the process. Both of the pain docs I've seen are physiatrists. Perhaps that specialty makes a difference? I do know physiatrists are more likely to prescribe things like physical therapy and acupuncture for chronic pain patients.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Aniek has some good ideas there. I think you just need to listen to your LLMD for awhile and see if he solves the problem. Maybe you just haven't had the right doctor.
Been treated for Babesia yet??
Good luck!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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tailz
Unregistered
posted
We must be related. I went through a hellish nightmare trying to find a doc to prescribe my Klonopin without a counseling stipulation, while they treated me like a psycho drug addict.
I ended up cold-turkeying a 16 year benzo during my worst Lyme flare ever. I almost died, but didn't care at that point. I am in pain constantly, but what can you do?
I had a similar experience with an Allentown ID doc. He didn't run a single additional test on me, let me scream and carry on, then excused himself and sent his receptionist in with an offer of water. I have ZERO respect for ID docs and the CDC.
You most likely have a bunch of infections. Find an LLMD and have him test you for malaria. Mine came back equivocal, and I've never been outside of the US.
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
I think Aniek summed it up very well. Most of us are here because of no diagnosis from all kinds of doctors, and a positive test from Igenex.
Take care.
Posts: 1366 | From Southeast | Registered: Sep 2005
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
If you are seeing an ILADS LLMD, if he/she had any doubt that you have lyme disease, they should have done a differential diagnosis. That is, ruling out other things that mimic lyme disease.
"The differential diagnosis of Lyme disease requires consideration of both infectious and noninfectious etiologies. Among noninfectious causes are thyroid disease, degenerative arthritis, metabolic disorders (vitamin B12 deficiency, diabetes), heavy metal toxicity, vasculitis, and primary psychiatric disorders."
"Infectious causes can mimic certain aspects of the typical multisystem illness seen in chronic Lyme disease. These include viral syndromes, such as parvovirus B19 or West Nile virus infection, and bacterial mimics, such as relapsing fever, syphilis, leptospirosis, and mycoplasma."
"The clinical features of chronic Lyme disease can be indistinguishable from fibromyalgia and chronic fatigue syndrome. These illnesses must be closely scrutinized for the possibility of etiological Borrelia burgdorferi infection."
There is more info in that document that you might find interesting.
The fact that you had such a clear response to abx seems to indicate that you have something that responds to abx and thus you are on the right track. As others have said, you may have other issues too but your response to treatment seems to be a huge clue in your search for an answer.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Thanks for the replys. I am going to mention maleria to my llmd at the next appointment.
I need to get to a doctor ASAP that deal with pain management and has a fair amount of experience in dealing with tick born infections and the pain it causes.
Current one doesn't like the meds I came to them on and is reducing them and wants to get me off of everything, but isn't sure if pain will go away off of them. They don't understand how severe pain can be, even after talking with LLMD. They think that pain is one issue and I'm spiking and that tick stuff is a seperate issue.
How could I not have pain if I still have tick borne infections? Barely a month of treatment and they don't understand why I still hurt. We want to get another opinion but are having trouble finding a doctor.
Posts: 114 | From USA | Registered: Sep 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by blackbirdsings: Many of you are familiar with my health issues and know that I just started treatment with a great llmd.
Our local doctor has great concerns of lots of antibiotics being used and is adament that there is something else going on with me. He admits that whatever it is, very closely mimics tick borne infections and acts very much the same way.
American trypanosomiasis Chagas disease ?? causes a lot of symptoms like lyme. But I would bet its lyme and a coinfection babs?bart? I dont know where your from but theres also powassen outbreak in maine a few years ago.If it there its here . hge,parvo virus,I would need more to try to figure out area your from outdoorsy person live near woods? that sorta stuff.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
I am not sure what your "other" symptoms are without doing a search on your posts...but...
Everyone, to some degree, is different. Your symptoms will vary with how long you have had the disease, what it has attacked, and whether or not your immune system is trying to fight it off. What symptoms do you have that just do not "fit"? Because I don't believe every ounce of pain is Lyme and very well could be something else, I understand the frustration of different opinions and feeling like you have nowhere to go.
As for pain, I take Lyrica. Its not a narcotic. Its an anti-partial complex seziure med that is also FDA approved for fibromyalgia pain and neuropathic pain in diabeties and so forth. Its not a NSAID, its not steriodal either. You have to take it daily, generally ramp up to several times a day.
I have to say I am rather pleased, and it works better than Neurontin with less side effects. No, it will not do anything for an acute migraine, and I will still need fiorsett for that. However, it is reducing the frequency of my headaches and I am not in extreme pain day in and out. I have been on it a month, and am ramping up slowly.
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
Hi,
Did they get the Hereditary Angioedema correctly treated? If I recall, that was a year ago that that process started. In any case, how long after you stopped the antibiotics did it take for the symptoms to return and were they the same symptoms (or did they change i any way)? Also what happend with the levequin, did it help or was it the doxycycline that made the difference?
If the antibiotics worked, particularly doxy, my bet is that it is a bacterial infection of some sort. Doxy is thought to supress the resistance to viruses (thats why I am asking of there was an change in syptoms) so what happend before and after is sort of important.
I also remember that you where around horses a lot, or more specifically horses that had come in from other countries. The damn flies and fleas can be random vectors for some odd stuff rarely reported but non the less viable in humans. Did the ID know about this past risk history?
I probably can't help much but If you let us know some more information on the above I can provide a memory dump of some of the relevant information that I might know.
Posts: 1184 | From north america | Registered: Feb 2003
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posted
I tried Lyrica a little over a year ago and it didn't help the pain alot, and the side effects were too much. There are a couple of different pain meds that make me weepy and Lyrica is one of them. I was very dissapointed to say the least.
Turns out hereditary angioedema (HAE) was a VERY wrong diagnosis. Turns out my C3 is low due to being so ill, but has nothing to do with HAE. My symptoms got worse within a week or less of being taken off of antibiotics.
Levaquin made at least three inches of edema go away in a day and it kept getting better. I really believe that it is some kind of bacterial infection and still think it's tick related. I think it's more co-infections than lyme but could be wrong.
I am also concerned that I have some kind of virus and want that looked into further. I am going to a new doctor next week about pain and am going to bring up virus issues. Especially B-17 or is it B-27. A friend of mine had that and they even said to me that when they got sick they thought of me, since it was so much like what they hear and see of my illness.
I am also having really horrible breast swelling in addition to the regular edema, and they are very tender. Basic tests were done awhile ago and they weren't able to figure out what was wrong. I was told since I wasn't pregnant and it wasn't cancer to just be happy with bigger breasts. What a horrible thing to be told, huh?
A biopsy was never done and I think it may have to be done, especially since it could be tested for bacteria and viral infections. I just know that something is very wrong and I am very concerned. I feel abandoned by mainstream medical doctors. If it isn't easy and straightforward they don't want to make the effort to deal with it and than we end up suffering.
I don't remember if my new LLMD knew about horses from other countries, so I am going to make a note of that and discuss it with him next month. I do recall working by a lake as the sun was setting and had an insane amount of bites that left round circular places that itched horribly and didn't go away for at least a month. Following that I got alot worse, so I know I got something from all of those bites.
I'm not sure if I answered everything, but if I didn't just remind me and I'll try to reply to everything next time. Thank you all so much for all of your help and support!
Blackbirdsings
Posts: 114 | From USA | Registered: Sep 2005
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
What happened when you took doxy?
Posts: 1184 | From north america | Registered: Feb 2003
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