posted
My 39 year old son has Lyme Disease. Actually he had it for at least ten years. He would have several months, was not diagnosable for several months and then have it positive. The last six months he had not been positive in testing.
But there are many health concerns and now Montcalm that worry me.
My son had a grand Mal seizure, high blood pressure, and joint pain when he was about 29 or so. It wasn't until he was about 33 before he was tested and positive for Lyme.
Since then he has had terrible acute and now chronic pancreatitis. On top of that he has heart concerns, every GI problem you could imagine. Z
He lives in constant pain and poverty. His wife does not have Lymes, but has seizures, h pylori and fibromyalgia. They live with me in my tiny trailer home - I have my own health concerns.
He has another grand Mal seizure earlier this year. He then had Aplasma necrosis which his joints don't get enough blood and they die.
He had to get total hip replacement and surgeon made one leg an inch too long so he has to limp around and his back is hurting and could cause his back have same problem as hip and need surgery.
He's been so exhausted for the last few months. I'm not sure what is wrong. He barely can get out of bed. He says he can't get a good nights sleep and I know he has sleep apnea and we are trying to get insurance to pay for machine.
He is in the hospital now for Pancreatitis. He is really upset at everyone. He was so tired and pain medicine that he fell asleep sitting in a chair and they put an alarm on his bed so they could watch him. He freaked out and wanted to leave the hospital.
They are running tests on him - X-rays of his heart bacteria cultures.
I had asked them if he could take a shower sometime as he wasn't able to before he came because he was in so much pain.
His immune system is so low that he had gotten a couple abscess from the IV's at previous hospital.
So yesterday they asked him to take a shower. He was so insulted. He wants out of hospital.
I just am concerned about him. He is so sensitive and reactionary. I hate to say it but immature for his age. I don't know if it's Lyme, sleep apnea, depression or a more serious mental deterioration. Just hoping for insight.
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I am so sorry about your son. I can't begin to guess all the things that are wrong but pancreatitis is soooo painful and the pain is seriously overwhelming and frightening. I don't think they give anything in the hospital even that is good enough for the pain.
If I had pancreatitis I would not want a shower and I would not want anyone to talk to me or come near me. It is horribly bad.
If his pancreas has been sick his downturn could be because of that. Don't overwhelm yourself with too many problems at once. When the pain clears he could feel a bit better.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
Thanks Jordana and HW88 for the kind words and encouragement. My son used to be the life of the party, so chasimatic and handsome. He's gained weight (weird for pancreatitis), I think it's his medicine maybe.
He isn't so charming anymore. He is still sweet and treats his wife like a queen. But he seems over reactionary and fragile. Just praying for miracles
He called me this morning sounding a bit better although he said he had a temperature of 103. That can cause crankiness I would think. He said they said some enzymes are low. Course he didn't ask questions.
Since he isn't showing positive for Lyme's now, they stopped the antibiotics. He has so many health concerns, most of them come back to low immune system.
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I have a friend who had a very bad bloodborne disease that was discovered when he was 40. Over a period of time he lost his hip and ankle, broke numerous bones because of low oxygen,
went through a torturous treatment process that did not work and was basically, by the end of it, totally crazy.
He was crazy with the pain. you know. Impossible to talk to, I'm surprised he wasn't arrested. He would sleep from friday night until sunday afternoon.
But bit by bit he walked through all these trials and finally got a drug that treated his disease. Things got much better for him when the pain stopped.
When his disease was finally put into remission he was 50 pounds overweight and pretty beat up, but is now happy, humorous, and generally okay. A lot better than me these days for sure.
You never know. Just gotta keep trudging through.
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posted
There's a lot of medical issues here. It would be best if he can work with the people trying to help him identify what's going on. Usually various tests are run to see if we have anything identifiable. Temp of 103 is indicative of something - they need to keep working with him.
He still has Lyme - that doesn't go away. Has he been seeing a Lyme doctor, as in an LLMD?
A comment about the short leg. Usually when this happens, a lift gets put on a shoe, I think, so someone can walk normal. This gets done with a podiatrist.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Robin123, Thanks for your input. His PCP is not listed as a LLMD, but would probably be Lyme friendly literate. She is the prime dr in the city to treat Lyme, CCFDS, Fibro. She diagnosed my son and put him on antibiotics. I thinks she tests him a couple times a year. When he tests positive, she puts him back on antibiotics. I understand most think he probably should be on antibiotics for a couple of years, but she does not do that.
As my son is disabled now with a very small amount to live on, he feels blessed to be able to go to someone sympathetic and obviously wise enough to diagnose (Followed with confirming bloodwork). She has other treatments that Medicare/Medicaid does not pay for.
I'm not sure what all the illnesses are related to. We just assume it's all Lyme. Danger is nothing is taken too seriously as we assume it's Lyme. If his joint necrosis which happened two months ago, then if it was caused by Lyme, he is not being treated for that. If his low immune is something else, it alludes his dr who is pretty smart.
His leg is 1 inch short. So the insert does not fit properly in his show. We were told he really needed his shoes to be redone which he can't afford. But he does put something in his shoe. With the necrosis, all his joints are subject to failure. That is why it's so concerning that this is putting extra pressure on his lower back and knee. He is already facing having to get his hip replaced every 8-10 years.
Thanks for your concern. It does make me think what more can we do.
Oh, they are running cultures to see why he had a fever. I think they plan on giving antibiotics and sending him home tomorrow as his pancreas levels are getting close to normal.
Posts: 16 | From Texas | Registered: Sep 2016
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posted
Has his living conditions been evaluated for mold damage. I have just started to learn that Mold related illness can compound other conditions, especially lyme and make people very very ill. It even can be deadly in certain instances.
This site has a lot of information on it. There are also videos on youtube which you can learn from. Search "mold illness" or "Biotoxin illness"
posted
Actually he and his wife lived in an apartment that had mold. That's when he got pancreatitis and joint pain. He did have a seizure and high blood pressure (He was skinny then 28 and ate healthy) before which makes me think he may have had Lyme at that point. Not sure about now.
Posts: 16 | From Texas | Registered: Sep 2016
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
He has lyme and mold still..lyme does not go away ..his wife fibro is likely lyme too..you can order antibiotics online or try other modalities ..ther is bee venom treatment ..rife and herbs ..if he is having skin stuff get him out of hospital befor the kill him with mrsa .
Try cordyalis fot pain . Or tramadol ...he need diflucan and if he had fever he may bave babesia .. please research more ..watch under our skin documentary ...30 days does not cure lyme and it is very expensive and political...it is in his bones ..try some herbs and bees are cheep...
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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posted
For the joint problems, Great Lakes Gelatin might help. It rebuilds the collagen in the joints. You can pull it up in amazon and read the customer feedback.
Regarding his surgery and the fact that his leg is 1 inch shorter than the other one, have you considered going to a couple of different lawyers and discussing it?
Consults are free but ask if there's a fee anyway. Maybe you could get a consult with a couple of good, reputable firms and see what they suggest.
I know, with his physical problems, that it would be a hardship for him to go through it, but quite frankly, he deserves compensation for such a horrendous malpractice having been committed on him.
Posts: 653 | From Northern Virginia | Registered: Oct 2014
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posted
Thanks Blue, Yes, I've read a fair amount in addition to reading this site. I know exactly what you are talking about. He has been on antibiotics for months. When he was first dxd his dr put him on antibiotics for three months. Now she tests him sporadically and puts him on antibiotics if his test results are positive. I think it's been a year since he tested positive. He was tested for Babesia, but was negative. I also know getting testing that always shows up is difficult.
But he is still very sick and it seems there is something new around every other corner. Now he has big red patches on his face. Not sure if fungus or what. He just grew a beard to hide them. His heart rate will go up to 175. His BP can get as high as 175/115. He's 39 and has a hip replacement. He's like an old man. He feels defeated.
I also was positive for Lyme, but was negative the next time. I have CFIDS & Fibro which dr said could have caused that. My DIL was negative when she was tested. She almost died early this year from aspiration pneumonia and seizure when my son was out running errands. She was thankfully revived. But I'm so concerned for her. She didn't have insurance until recently and hasn't had her seizures properly medicated. I believe she self medicates with alchohol and smoking. Course my son doesn't drink but second hand smoking is not good for him, much less her.
She hasn't felt well. In addition to seizures, Fibro, she has H Pylori and who knows what other gut issues. She throws up quite a bit. She is a cutie and she and my son love each other. But all their plans for life have been dashed. They love children and want children but have many obstacles. They live in small 2nd bedroom with me in my single wide, 30 year old mobile home. She is not a good housekeeper but is very proud and won't accept help. All distressing to me. My son, takes care of her. He cooks for them and runs errands. He lives to treat her like a princess and she influences him for good and maybe not so good at times.
My mom had helped me when I became ill but she has Alzheimer's now. I am blessed to have a place that is paid for or I can't imagine how we would live.
I do believe in faith. That's my comfort and I pray for them continually. There are seasons in life. I pray for a turnaround in ours soon. My life has become very small between going an hour and a half to visit my mither, going to visit my ill father, and trying to take care of my kids. I am too exhausted to keep up with church like I would like.
We are living below poverty now and my son only has a few clothes he can wear and they are really rags, he doesn't want to be seen by anyone. This is their prime time and it is ebbing away. Sorry to go on. I guess I'm so concerned, with no one to pour out to.
Oh, his Crp test came back really high - like 26, when it should be around 2, 3. Supposedly he is susceptible to cancer, heart disease, etc. his immune tests come back at the bottom. So, I'm thinking we need to work on his immune. He said the hospital said he had some low enzymes - magnesium sulfate was all he could remember. Don't know much but gut issues caught my eye. I'm thinking maybe that's an area to focus on. His dr is a very traditional dr who treats untraditional patients. So, she won't be closed down, but maybe we have to look outside her for complete picture. The problem is insurance won't pay and we are scraping together for peanut butter!
Thanks for reading!!
Posts: 16 | From Texas | Registered: Sep 2016
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posted
Tulips - Yes, I have thought about suing the dr. I have called a couple lawyers in phone book, but no one has called back. I know he needs to go back to surgeon and tell him how it's affecting him. He needs it on record, although his PCP Is concerned, so I'm sure that's documented.
He also needs to try some therapy, but have trouble getting it okayed by insurance. And we only have one car, and my son would have a hard time commuting as there are so many bad days.
But I think he needs revision surgery, and I think his insurance would pay. It would be nice to get $30,000 for all the grief and spinal problems. I think Texas just had a clamp on how much you can sue. Maybe that keeps the lawyers away. A good thing in some ways, but it would be nice for some help.
Posts: 16 | From Texas | Registered: Sep 2016
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posted
Lawyers won't call you back if there's a conflict of interest. If they have previously represented the doctor and possibly the hospital, ethically they can't represent someone who is thinking about suing their client (someone they have previously represented).
In order to get an professional opinion, you might need to go out of your town - call attorneys in other towns and then you can probably find one who can give you a consult. Most likely it would be settled out of court - they probably wouldn't want it to go to trial. I don't see how you could possibly not have a case.
If your son is too ill to go to the consult, you could go. Take whatever documentation you have with you - canceled checks, medical receipts, photo of your son's leg that shows that it is shorter than the other leg.The first consult is probably with a paralegal. There would probably be a fee for the one with the lawyer.
If he agrees that there is a case, you could ask if the all fees could be held off till there was a settlement. All doctors carry malpractice insurance. Don't worry about it ruining your relationship with the hospital. If it did, then you would need to make a second appointment with your lawyer and discuss that problem. Whatever you decide, good luck.
Posts: 653 | From Northern Virginia | Registered: Oct 2014
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posted
Tulips, thanks for the great guidance you provided. I think we will try a bit more to find a lawyer!
Posts: 16 | From Texas | Registered: Sep 2016
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Bee venom therapy is Lyme treatment.
It's not a miracle. But people are getting well using it and one thing it does is very cheaply helps the immune system re-regulate. It also helps with arthritis.
One bee is ten cents. It's a cheap, multi-purpose therapy.
Posts: 2057 | From Florida | Registered: Feb 2015
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bluelyme
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Member # 47170
posted
I agree with jordana ...please consider that ...some bee keepers will let you do it for free. ... .
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Mold can live inside you and cause just as many issues as lyme according to many I have spoken to.
Posts: 70 | From New Jersey | Registered: Aug 2013
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posted
Kms1990 - Thanks! Sadly the closest dr is 565 miles away. I would LOVE to have my son go to one.
Posts: 16 | From Texas | Registered: Sep 2016
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Also to test this theory out, some people take a cheap and simple approach (though sort of drastic) by sleeping in a tent in a cool dry place for a period of time to see if they feel better and staying outdoors as much as possible.
Posts: 70 | From New Jersey | Registered: Aug 2013
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posted
kms1990 - thanks so much! There are some dr's in the same state. The nearest about 300 miles away in Austin, TX, but my son and DIL lived in Austin and would live to go back anytime.
I'm not sure about insurance, I'll have to check. But it is something to give hope.
Posts: 16 | From Texas | Registered: Sep 2016
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posted
Jordana, thanks for info. I am joking the FB group. Looking forward to learning all about Bee Stings!
Posts: 16 | From Texas | Registered: Sep 2016
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Do it by example shushu.. it is a art and a hobby and they are little counselers and healers read the threads on here....they can restore read the elle lobel story and when your son sees how brave and strong you are he will follow suite ...
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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posted
Thanks bluelyme for the encouragement! It definitely inspired me. I did mention it to my son and he had seen a special on it and was interested. I do think it's something he has to see though.
Thanks for referring me to Ellie Lobal story. I will definitely read it.
Posts: 16 | From Texas | Registered: Sep 2016
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posted
Thanks bluelyme for the encouragement! It definitely inspired me. I did mention it to my son and he had seen a special on it and was interested. I do think it's something he has to see though.
Thanks for referring me to Ellie Lobal story. I will definitely read it.
Posts: 16 | From Texas | Registered: Sep 2016
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me
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Member # 45475
posted
I am sorry to hear about everything that is going on.
I highly recommend, just like bluelyme, you watch "Under Our Skin." It will really open your eyes and give you better insight as to what is going on with your son and Lyme and coinfections in general.
I recommend he sees I highly qualified LLMD. If you've tested positive for Lyme, it would be good to see a LLMD too. Same with his wife.
There is hope. Many of us have made progress. It is a long road, but we will support you throughout the "journey".
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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