posted
No one should be in pain to that extent for that length of time.
You do not mention whether you take anything for pain or not.
My suggestion is start with your LLMD, explain your agony, if not satisfied, I would then go to my family doc, if that doesn't work, ask for referral to pain management.
Pain is my worst symptom. Getting it under control is the only way I function.
Do not give up until you find a Dr. to help you. Persistence is the key here. IF necessary take your husband along to verify your suffering. Again, giving up is not an option. Keep searching until someone will help you.
Posts: 366 | From Louisville KY. | Registered: Nov 2003
| IP: Logged |
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
<<<<< missing and family >>>>>,
I am so sorry to hear this horrible illness has affected you and your family so harshly.
I can sympathize and empathize some too... our yard is a mess... when you cannot mow,you can't! [Around here, you can get fined etc].
We are praying the new management will have mercy, our yard care doesn't, they didn't care to show up,or return call.
I ache constantly...but I really think the overwhelming weariness is what gets one the most.
As a teen-twenty something I kept getting 'growing pains'. Felt like someone was pulling my legs out of socket,knees hurt all the time etc.
They couldn't figure it out [this was -mid seventies,early eighties. Now I know it was Lyme and Co's.
Is there someone y'all can call,that might be able to help a little??? I know that that is also difficult all to often to find some help.
One of our occasional 'helpers' is working a couple jobs,and fighting the results of a concussion, while trying to take care of her daughter.
The other 'helper' is working crazy hours and in and out of the state taking training. Around here those two are all we have to help us.
When I am really down, I try to listen to a little music if at all possible. I pray,and read scripture,
...and maybe a good book, if my eyes allow [ as we know sometimes our brains,eyes etc. don't make sense of what we read.].
Will keep y'all in our prayers, I'll tell TxC' too.
Don't know how the weather is in your area, but cold and/or damp will make us feel worse often[it does me].
Try to stay dry,and warm but not to hot if you're in a higher heat area.
I'll check back later...
Jus' Silverwolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3558 | From SE Idaho | Registered: May 2006
| IP: Logged |
posted
I just shelled out a bunch of money for a product called Adya Clarity. Its supposed to be super effective on joint pain and removing heavy metals. I should be getting it this week and I'll report on how it works for my joint pain.
Posts: 42 | From Virginia | Registered: Aug 2011
| IP: Logged |
posted
I barely have joint pain. It is nerve pain.
I have had it for four years. The stupid ER thought that I had a bit of nauseau and maybe gall stones!
I never complained once about my stomache.
I went in thinking I was having a heart attack, and because my heart rate kept on going up to 135 beats per minute.
They monitored my heart rate and when it showed that it went from 135 beats and down to 70 beats within seconds, and then back up again and all ovet the place.
Do you knwo what they said? That my heart was doing that because I was in the hospital. I had to explain to them, no, that was WHY I came to the hospital in the first place.
I am on oxycontin, oxycodone, and amytriptaline and the highest dose of neurontin.
I have gone to the ER a few times, and yes, I take a family member with me. One time I didn't, and the security guard escorted me right back to my car because they all thought I was a drug addict from the street! Looking for more pain killers.
They wouldn't even listen to me.
I went in to the ER just a couple of weeks ago, with that whole heart incident. I was crying from all the nerve pain ,and from the sharp pain in my heart!
The nurse screamed at me to shut up, and slammed the door. Well, I had my eyes closed the whole time and when the door slammed, i wasn't expecting it and I almost fell off the table.
That was when I phoned my dad to come and help me in there.
I have been to many doctors and specialists and they don't take this pain seriously.
My doctor told me to just get used to living this way.
She said that the whole time she and the specialists all knew that I had Lyme disease and they did nothing about it.
Was it fun for them to see me suffer and almost die?
My LLMD is in another country, and I can't find one in our country to help me.
I have been over this issue many times on Lymenet.
My husband is dealing with Bartonella and so I feel like I am talking to a robot who swears at me everytime I ask him to talk with me about stuff.
He has good days, where he acts like himself again and where I think he is all better, then he has bad days with Lyme and Bartonella rage.
So, today I feel all alone. And I pray and read the Bible constantly. I beg God and Jesus to help me.
The pain feels as if I am having surgery without anethesia! I feel like people are cutting me open, smashing me with a million hammers, kicking me then running over me with their cars!
I dont' want to live anymore.
I even phoned a two pain doctors that were recommended here, and I was PM'd all their info. and stuff.
They never called back.
I am all alone. Last week, I asked my dad to take me to the doctor. He was telling me how weird I was and how he just can't stand my personality. He was putting me down the whole time. Yet, while we waited in the waiting room, I met a new lady, she was a senior citizen that had lots of great-grandchildren.We talked for afew minutes.
Well, I just can't stand being all alone, with no one to talk to, and have to try to deal with all this pain. I wish I would have just died from this disease,and many times I just wish I would die. I wish that someone would just break into my house and shoot me dead.
I feel like I am being suffocated to death. I can't bear this anymore. It is too much! All I do is sing praises to Jesus all day. I can't do anything else.
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
| IP: Logged |
karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Missing, when is the day you move from this house? I know what mold does to humans and how really dangerous it is.
Posts: 1834 | From US | Registered: Oct 2008
| IP: Logged |
posted
I am so sorry you are going thru this. Praying for some relief for you.
Posts: 857 | From northern california | Registered: Dec 2009
| IP: Logged |
I had this pain start when I was bit by a dog at a dog park.
4 years asgo, we didn't live in this house, and it started after the dog bit and the tick bites.
I noticed the pain one day, when I went into the shower and the water felt like needles cutting me open!
I do appreciate the danger of mold.
I know that I am sick with something from that dog.It was having attack episodes, and then would be docile and very sad that it had tried to attack another dog.
It had been eating all types of rabbit, goose and racoon poo!
I don't know who can help.
My MRI's of my brain all showed brain lesions!
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
| IP: Logged |
posted
Sent you a PM! God be with you and let the Holy Spirit come and comfort you.
-------------------- I have a good time wherever I go! Posts: 665 | From Lost Wages, NV | Registered: May 2006
| IP: Logged |
karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
So the worst mold is gone, big relief. You still can have pain from the toxic mold in your bones etc.It takes years to dissolve. If you do a urine test you can se how much mold is in your organs.
But let's work on the dog:
diseases transferred by dog: -bartonella -parasites all kinds -viruses -toxoplasmosis - ? maybe if it was the dog you just go to a good vet and ask with what a dog could have infected you, also in the area the dog lived
basically that should be all treatable either bacterial or viral or parasitic and you could do combinations
serious the vet would know immediately
You need to find the reason, pain medicine is not the solution.
Posts: 1834 | From US | Registered: Oct 2008
| IP: Logged |
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
OMG! This is intolerable. Who is taking your case seriously??!!!
People drive me nuts. Doctors drive me even more nuts. The sicker you get, the more they want to blame your "personality." Oh, give me a break!
I believe you about the pain. Many pathogens head straight for the nervous system. If they can't get us in the periphery, they get us in our brains. Or both. So unkind.
I agree with karenl. Go back to the dog bite. That dog had something, obviously. Have someone research canine diseases for you.
You need a doc who will listen to you and do a proper rule in/rule out. And not yell at you and belittle you. We're the customers, for cryin' out loud!
It sounds like that dog had something neurologic. Start there. Could you have rabies? It's usually fatal if untreated, but who knows in our population? We seem to harbor a ridiculous pathogen load, and somehow survive and linger, confounding everyone in our paths...
The Lyme patients I know with the worst pain have Babesia duncani. Have you tested or treated for that?
I know this is daunting, but you may need to find answers yourself. Or find someone who can and will help you.
I think you can get through this. Use the few semi-OK hours you may get to research and make calls.
momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
My daughter started to feel very awful a couple months ago and I feared that her LD reared it's ugly head...(she is much better these days). She told me that this was different from her Lyme and she felt it wasn't that.
Took her to her LLMD and LLND because something was going on and mainstream doctors are worthless in my book.
Come to find out she had tetnus and some "opportunistic baterium"...she has had the tetnus vaccine, but, it was there in a non-lifethreatening form...along with these two other bacteria....but still making her very ill.
She remembers being poked in the leg by something sticking out of a garbage bag and then a few days later she started going downhill...but didn't put the pieces together till her doctor/s figured it out.
My point is this...my daughter was doing very well until that puncture wound...then got alarmingly ill...her doctor's put her on a protocol to kill the bacterium.
Even though she had the tetnus vaccine she got somewhat sick anyway...and the other two bacteria rode right on in with the tetnus bacteria...who would of known that?
Since you are already compromised...having something like a bite happen...that is probably causing havoc.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic