momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
We got home from a LLMD appointment Tuesday where we found out my son's CD57 is at 10... and I was scared. That number scared me. It's so close to zero!
I walk in the door and my dog (who also has lyme) is crying and won't get out of her crate. I picked her up... she won't walk... she won't eat.
So I call the vet and they say they can get her in Monday. I said, I don't think she will make it! She just finished her Doxy on Sunday and she is not walking on Tuesday!
They saw me that afternoon. The vet thinks she slipped a disc in her back. They wanted to give her steroids for the swelling.
I explained that I had been through this with my son and there was no way in HE** they were giving my dog steroids. I left with amoxy and pain killers. My dog is still having back problems.
I took this as a way out with my son to explain that all dachshunds have back problems and although the dog does have lyme... she has a back problem too.
I am afraid the dog is going to die and my son is going to be crushed. It's that bad. The dog is just... sick. Really, really sick. And the vet doesn't know how to help her. I know more than the vet!!!
I thought if I could explain the back problem, if something happens where we can't save the dog... my son won't think she died of lyme disease.
Today, my son hurt his back.
Is this God's way of telling me something?
Save the dog, save the boy?
Why are their cases of lyme disease so darn similar and what is this telling me?
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
| IP: Logged |
17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Heather, I am SO SORRY this is happening! I am praying for healing!
Don't panic, choose hope, not fear! And stay on your knees!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
| IP: Logged |
Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
I just don't even know what to say.
I'm sorry you are having to go through this.
Posts: 1142 | From South | Registered: Dec 2010
| IP: Logged |
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Sending positive energy your way.
Are they being treated for more than Lyme? My worst back pain comes with Babesia. And I think Erhlichia is pretty nasty in dogs.
We just had a bout of dog illness. Our Boxer, Flynn, had acute pancreatitis that put her into kidney failure. We have attended this dog night and day for three weeks, but she is recovering. Doing well, in fact.
Like you, we knew more than the vet. We are so relieved, and proud of ourselves for advocating and caring for her.
posted
Treat the dog, and I'd wash my hands after handling him/her/avoid its fluids--I think it was Keebler who had a story about a family where all got it except the member who avoided contact with their infected dog (there is documentation of Lyme in all fluids.)
I know someone who has a dog with Lyme who was treated and, with periodic re-treatment, has done pretty well (to my knowledge, the family members do not have Lyme.)
IP: Logged |
momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Thank you everyone. It is so hard some days not to blame the dog for my son's illness. And yes we will keep treating the dog.
Three different vets have given 3 month long courses of doxy... which seemed to keep things at a tolerable level for her. The problem is, very soon after finishing the abx... she goes lame again.
She only has 10 days of amoxy this time. It does not seem to be working anywhere near as well as the doxy has in the past.
She does well with acupuncture so I will schedule another round of that for the dog.
First, I must get my son some kind of relief for the back pain... he is not keen on the idea of acupuncture. I am looking into physical therapy for him. He is not to keen on that either.
As for myself, I think I need some time away from being the caretaker for all this sickness. I need a prayer retreat... or a period of silence, away from everything and everyone.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
| IP: Logged |
17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
quote:Originally posted by momlyme: As for myself, I think I need some time away from being the caretaker for all this sickness. I need a prayer retreat... or a period of silence, away from everything and everyone.
That's a good idea, Heather. A very good thing to do for yourself. If your cup is empty, how can you take care of others?
My question is always, "When is a good time to go away? When can I afford to leave?"
The answer usually is, "Just go. The rest will fall into place."
If you let Daisy's God Thought thread know when you go, we will pray for you, (nurishment for you soul, refreshment, hope, regaining your strength, peace). Well, actually, I'm praying for you right now.
Blessings.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
| IP: Logged |
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
if your dog has a slipped disc likely the steroids will help. As long as the dog is on abx, he should be fine on steroids. if there is inflammation around the spinal cord, steroids and probably surgery are needed. no two ways around it. i had been a vet tech for 12 years before i got sick. it sounds like the primary problem is the disc then the lyme, is your dog able to pee?
Posts: 3905 | From USA | Registered: May 2007
| IP: Logged |
momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
17hens - if only it were that easy! Where to go? I wish I had a cabin out in the woods! It's a little cold now for camping. My budget is free to cheap, lol.
merrygirl - She can pee and poop, although when she ran out of doxy last, she was having trouble assuming the position to poop.
As long as she has doxy for abx she seems peppy and raring to go. With the amoxy... not so good.
I have had one other person say steroids are OK for the dog. That doesn't make sense to me when they made my son so much worse. I am having a very hard time deciding what to do.
I have the dog's acupuncturist phone # by my side...
Looking for an orthopedic who is lyme friendly... hopefully local, but I am in the styx here.
I feel like I am still in a huge fog from my amalgams coming out.
Maybe it's time to go see my NP for muscle testing.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
| IP: Logged |
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
How long was the Doxy given to your dog? I've heard it should be 6 weeks.. a month break and then another 4 weeks after that.. Not sure this is the standard treatment for dogs, maybe someone who has treated could advise.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
| IP: Logged |
momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
She would not get up to eat or drink. I thought she had broken something.
She had doxy at 100 mg 2x a day for 4 weeks. Then a week off where she went lame again... would not get up to eat or drink.
The first vet wanted to give her arthritis medicine. I wanted abx.
I found a vet that does acupuncture. She did an acupuncture session, gave 50mg of doxy 2x a day for 8 weeks plus immune support for dogs from Standard Process.
That was gone Sunday. By Tuesday she was not getting up again.
Not doing so well on the new drugs. She seems to improve to 100% on the doxy.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
| IP: Logged |
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
I would keep her on the Doxy, for as long as necessary.. I know that could be difficult if the vet isn't co-operating. Maybe time for a second opinion.
posted
my heart goes out to you! I have both a sick child with lyme and a dog (not sick). This breaks my heart and I wish I could be there to give you a big hug! Praying for you.
Posts: 312 | From Utah | Registered: Nov 2010
| IP: Logged |
17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Just thinking...
I have a friend who has a guest room w/ private bath. A mutual friend of ours, who has a stressful life, has been known to stay there for a day or a weekend when the need arises, to get a reprieve.
Maybe you have a friend like that?
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
| IP: Logged |
jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
heather--hope you made it through the day and tomorrow is beter. sorry you are dealing with all of this, how difficult.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
| IP: Logged |
2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Hey Heather,
Hugs.
I wish you could come up with maybe one night off.
We have a hotel locally that offers a buy one get one free night.
Maybe you have something there where you can enjoy two for the price of one, or better yet, one half-price room, splitting the single night cost.
Either way, you need a little time to rest your mind as best as you can....a nice hot bath, candles.
Try not to compare your puppy and your son. Encourage him to do the same. Dogs don't live a long life and I can't imagine lyme being equivocal between them.
You are gonna get through this. Posts: 2214 | From West Chester, PA | Registered: Aug 2003
| IP: Logged |
momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Thanks all! Your support means the world to me.
This was the hardest day ever... and not for all the obvious reasons. It would have been hard with the things I had on my plate.
Then, my son's godmother called and said that my son should be on his way to Boston to see a toxicologist at Children's Hospital.
My ex-husband had just shown her his hair test showing toxic metals are sky high.
I understand her concern.
I am also concerned, scared, overwhelmed, etc.
She pointed out that there were 16 Medical Toxicologists in Boston that surely would help my son. I asked her where she found this information and she showed me the list. I told her I would do some research and get back to her.
1 out of 16 Medical Toxicologists wrote several papers on the dangers of mercury in amalgams... how mercury crosses the placenta... children are in danger... chronic disease was on the rise because of the effects of mercury amalgams on the general population... etc. I was so excited!
This man could, and maybe would be able to help us.
He's dead.
Died mysteriously.
Dropped dead at age 55 getting off the plane after a trip to Argentina.
Nobody knows why.
The other 15 Medical Toxicologists either write studies on how mercury amalgams are safe and prove that people who think they are mercury toxic are just trying to cause trouble or they don't ever mention mercury in their papers.
Seriously, it's that bad.
Then I found "Goldfrank's Manual of Toxicological Emergencies" All 1151 pages are available online. There is one sentence about dental amalgams. It states, "There is no evidence to support the development of clinically significant disease from dental amalgams."
End of story.
I called her back and told her that I don't believe any of those doctors will help us. I believe it will be a waste of time trying to get any of the Medical Toxicologists to help us.
I tried to explain the controversy and how we have been to doctors that don't believe in heavy metal poisoning and it is a waste of time trying to convince them that something is wrong with my son when they are dead set against believing it.
She kept saying if I would just walk in and say my son is sick and I want you to tell me why, that they will make him well again. All I have to do is come to Boston. She thinks because we live in the styx... the doctors I am taking him to are not able to get him well.
I am worn out.
I believe I am doing the best thing for my son.
I don't think that she does, although that is how she left the conversation.
I just don't think it is possible to understand the amount of controversy that surrounds the two things that are wrong with my son.
Lyme Disease + heavy metal poisoning.
Most doctors don't believe in either one. My son has both.
Again, thank you all for your prayers, your ideas, your thoughts and for letting me vent my frustrations.
I hope tomorrow is a better day.
My parents own a motel. If I really wanted to get away, I could go there for a couple of days.
The problem is, who will make sure my son sticks to his diet, takes his pills, takes his binders, my husband says he will learn... but he works and puts food on the table.
Anyhow, enough negative. I need to shift to the positive. Saying a prayer for ultimate healing... feel that? Thanks all.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
| IP: Logged |
onbam
Unregistered
posted
Wow. I thought that mercury being toxic was old enough news that they wouldn't kill you for talking about it.
IP: Logged |
Most ACAM physicians believe in mercury toxicity and do chelation. Hubby had a mercury problem back in 1999 before he got sick with tickborne illnesses.
By itself the mercury problem was so much easier to diagnose and treat than the tickborne problems. A chelation challenge test would be much more reliable than a hair analysis for toxic metals. The hair analysis is dependent on rate of hair growth and many other factors which could skew the results.
You can search for physicians by location or specialty.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I live in boston and believe me so far no miracle workers here. I drive to ct
Posts: 3905 | From USA | Registered: May 2007
| IP: Logged |
momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
onbam- I don't know for sure... but it is suspicious. PM me if you want more details.
Thanks Bea - I have looked at the acam site for a doc in my area... there is one but he is not accepting new patients. I asked if we could be put on a waiting list or something? The secretary said no, not at this time.
I am confident that the hair test is sufficient for our purposes. We need a point of reference and we have one.
Plenty of mercury is coming out and right now the only chelating agent we are using is zinc!
We have plenty of binders in the protocol to grab the stuff and get it out. It's just not instant. His godmother was concerned with the fact that it may take 6-8 months (or longer) to get him well... when he has been very sick since last July.
I tried to explain to her that there is no magic pill or treatment. She just doesn't get it. These things take time. Fast chelation is much more dangerous than doing this slow and easy. His body is much too fragile to push it.
I am going to start chelating him according to the guidelines in Andrew Cutler's book, Amalgam Illness. We will be using a mixture of DMSA and ALA for chelation - along with binders of course.
merrygirl - just as I suspected... I wish there was a miracle worker somewhere!
I think my solution for his godmother is sending her a copy of the book "Cure Unknown" I have to finish reading it myself first, just to be sure it is the right thing to do.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I'm so sorry to hear all this! Good grief it's a lot.
On the back problems for your son: osteopathic treatments would be great, maybe followed by Physical Therapy. Get a recommendation of someone good, if possible.
But the best thing of all for that is Prolotherapy. Go to: GetProlo.com for tons of info and dr referrals. It is injections, so he might not like the idea, but it really works terrifically! I done it tons, and it's saved my life.
They put lidocaine in the injections, which help with pain. And they could give him something ahead of time for the pain. I know of an osteopath, who is also an acupuncturist, in CT, who does Prolotherapy. He's very gentle, not painful, and wonderful. PM me, if you want his info. (But if you PM me, clear your mailbox, as it's full).
I bet he could Prolo a dog,too, although it might be a first. You can always ask. It's way better than surgery and steroids!!
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Heather, I am so sorry to hear all of this. Sometimes it seems like it's more than we can bear. Thinking of you, friend, and sending good wishes your way. God bless.
Posts: 2238 | From East Coast | Registered: Jul 2010
| IP: Logged |
posted
Momlyme, could your son's pain be from swollen lymph glands? is it upper or lower back?
Posts: 723 | From Montreal | Registered: Oct 2010
| IP: Logged |
momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Rumi - I looked up the prolo and I will keep it in mind. No one close... and he is in too much pain for a trip to CT.
Tammy - Thank you.
Shahbah - It is right in the middle.
My son is going to see a chiropractor this morning.
The dog is doing well on teasel root and Bar-1. Abx ran out a week ago. This is the first time she has maintained without abx since August.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
| IP: Logged |
posted
Hope the chiro will take his pain away, i am sure he will, keep us posted!
Posts: 723 | From Montreal | Registered: Oct 2010
| IP: Logged |
2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
momlyme,
I posted another thread about Reegenex, a company specializing in using ones own stem cells to treat the lumbar spine and regrow healthy cells.
They also do prolo.
See what you think.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
| IP: Logged |
momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
He's feeling much, much worse. Chiro says 24-48 hours he may continue to feel worse and then find relief... is this right?
Aaaagh! I am supposed to be going to a friends for a night tomorrow. I hope he is better or I won't want to go.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
| IP: Logged |
posted
Heather, u sound like a wonderful and strong woman.
i also have high toxic metals in me. my heart goes out to him.
your family is in my prayers. stay strong and keeping useing Gods strenth. thru him we can do all.
jason
-------------------- misdiagnosed for 19yrs until 2007 and trying to be positive for the future Posts: 21 | From mt.juliet tn | Registered: Feb 2011
| IP: Logged |
posted
momlyme, go with your gut. I live in Boston and if your son has lyme, stay as far away from these great doctors as possible! I learned the hard way.
Beagle
Posts: 348 | From MA | Registered: Dec 2010
| IP: Logged |
17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
momlyme,
I am so sorry for the difficult time your little guy is having. It's soooo hard for us moms, isn't it, because we'd do anything to take it on ourselves instead, but we can't. There's nothing we can do but comfort and love them thru it.
I remember when my daughter was in 3rd grade. She had had lyme & Bart for 2 years already but I didn't know it. I believed the pediatrician who'd treated her for 2 weeks of amoxy and said she was cured.
It was February of 2005 and I took my 9 year old daughter rollerskating with a friend. Only my daughter fell and when she stood up, her arm was on 2 different levels.
She'd broken both bones in her forearm and at the break they rubbed next to each other. By the time we'd left the ER and gotten her to an osteopath, we were told that at her age, one has to wait about 6 or 7 days for the bones to get sticky enough to stay in place before they could put it in a cast.
So they sent her home in a sling with her bones rubbing together for 8 days (6-7 fell on a weekend). She was in so much pain, she thought she was dying but I thought I would die too.
Morphine wasn't touching the pain. They told me to alternate Tylenol and Motrin, which I did, but it didn't do a thing either.
They moment they put her arm in the cast, her pain stopped. (But the story gets worse...)
That night we were in the ER again, only this time she couldn't straighten up, she had so much agonizing pain in her gut. She just curled in a ball on the ER bench and cried and cried. The ER told us she had the stomach flu and sent us home.
The next day I took her to the pediatrician and went on from there... she was in the beginning stages of liver failure.
I don't remember what number it was or what it was supposed to be, but I remember her numbers were in the mid 800s. They sent us home and said it would have to heal by itself.
It was 4 weeks of absolute agony. She cried almost all the time. It was without a doubt, the hardest time in my life. I would have given anything to take that pain away from her.
I don't mean to sabotage this thread. I'm really sorry if it seems I am. I just want you to know there are many of us who understand what you're going thru right now. You are not alone. I hope you feel our hugs and know we are praying for you.
Hopefully very very soon, you and your precious boy will be able to say, "remember when we survived that..."
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
| IP: Logged |
momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
quote:Originally posted by 17hens: Hopefully very very soon, you and your precious boy will be able to say, "remember when we survived that..."
Thank you Hens...
Praying for this day!!!
For all of us!
Sorry you had to go through that. It is a terrible thing to have to watch your children suffer with any ailment.
I keep thinking that God gave me this because I am supposed to learn something from this. I keep praying that I will learn that thing so this can be over.
My son keeps resisting God and faith. He is in despair and does not want to pray. I wonder if God is waiting for his faith to arrive.
Here's to better days!
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
| IP: Logged |
2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Heather,
How is your son feeling today?
He will be in my prayers.
Hugs
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
| IP: Logged |
17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Yes, I'd like to know too. I've been praying for him. You're on my mind and my heart.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
| IP: Logged |
momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
He said feels better. He said he feels like if he keeps going to the chiropractor he will eventually get better.
Ahhh... its good to hear something positive.
I am going to call his LLMD to order an xray and schedule another appt. with the chiropractor for later this week.
I did get away for a night last night. I went over a friends house for the night... we played Scrabble and talked. It was really good to get away.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
| IP: Logged |
2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
That's awesome Heather.
I keep thinking nutrition too. I can't get that out of my mind. Let's face it, that's what replenishes our bodies. Sleep is critical too, but what we eat is our life support.
I wonder if there is a special dies to promote back healing.
Heck, I doubt my daughter would eat it if there were. But there has to be good foods for the joints, muscles, bones. Probably all vegis and she runs from those.
Glad ypu had some gettaway time for you to clear your mind and make you stronger. I ended up seing a movie with my daughter that was dimented and disturbing, it just put me in a deeper funk. Not realizing quite what the movie was about.
Happy Valentines Day-
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
| 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!
![[Frown]](frown.gif)
![[group hug]](graemlins/grouphug.gif)
![[Big Grin]](biggrin.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic