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Health and Safety => Health and Safety => Topic started by: yukon cornelius on July 11, 2018, 02:33:05 PM

Title: Rocky mountain spotted fever
Post by: yukon cornelius on July 11, 2018, 02:33:05 PM
I had been feeling bad for a while and finally broke down and got an appointment. It took a month to get in and they drew blood. They called the next day and said all was fine. I kept getting worse and could barely function. We were able to go online and read the lab results for the blood test ourselves. We saw RMSF positive HGG  H. Not knowing what that was we looked it up. It turns out it meant Rocky mountain spotted fever tested positive high numbers. We called and they had mixed me up witwithh someone else who had already had it and was treated. They immediately got me on antibiotics. I have been very sick. I have now lost 20 lbs since June 25th due to not being able to eat. I lost 9 of those from July 5th until yesterday. I am very ready to be feeling better.
Title: Re: Rocky mountain spotted fever
Post by: Magicman on July 11, 2018, 03:35:54 PM
I was wondering about you so thanks for the update.  Hopefully I will see you in three weeks.  8)
Title: Re: Rocky mountain spotted fever
Post by: DPatton on July 11, 2018, 06:56:51 PM
Hope the treatment gets you well soon.
Title: Re: Rocky mountain spotted fever
Post by: Bruno of NH on July 11, 2018, 07:46:24 PM
I you get feeling better Sir
Title: Re: Rocky mountain spotted fever
Post by: YellowHammer on July 11, 2018, 11:20:55 PM
I am very sorry to hear you have it. I had it, and as you are well aware itís mean.  Not to scare you, but I lost 30 lbs in a couple weeks, was paralyzed for 3 days, turned bright purple from internal bleeding under my skin (hence the name spotted fever), had other significant complications and stayed in the hostpital 10 days.  Simple Tetracycline/Doxycycline in massive IV doses cured it for me.   

Are you improving?  Have you developed the rash yet? Are you under the close care of a medical professional?  I very much hope you are and certainly will follow this closely.  I hope you get to feeling better!
Title: Re: Rocky mountain spotted fever
Post by: thecfarm on July 12, 2018, 04:49:44 AM
Good luck to you. Good thing you looked at your test.
Title: Re: Rocky mountain spotted fever
Post by: yukon cornelius on July 12, 2018, 09:11:39 AM
Thanks everyone. Well, I actually feel very dismissed by both doctors and the emergency room. They have all just sent me on the way patting the first doctor on the back for a "good diagnosis" in my opinion he diagnosed nothing . I had to fight for the care I have gotten. It is very painful, stressful and emotional. I was pretty certain i was going to die.  I am feeling stronger at times. I cannot drive because I get very confused and lost. I feel often i am going to pass out. I have a large swollen place on my left upper abdomen that looks like a deep bruise but under the muscle. It is hot and had sharp shooting pains. Headaches, body aches, fever, nausea, weakness, blurry vision, diahrea. this is nothing to mess with. 
Title: Re: Rocky mountain spotted fever
Post by: YellowHammer on July 12, 2018, 11:36:19 PM
You are right, this is NOTHING to mess with.  It was at one time called black measles, and had a very high death rate.  There were a couple books written about it, and the history of the disease, and the initial attempts to control it are fascinating.  

There were two of us in town that contracted the disease the year I had it, the other guy died.  These days, the mortality rate is relatively low, but the complications can be severe including major organ failure (my heart swelled up three times normal), gangrene, and other long term issues as the disease attacks pretty much everything in your body.  A quick look at Web MD will tell more than you want to know.

If you are not getting the medical care you feel you need, get it, somewhere, somehow. 
I would strongly suggest you see a doctor who knows these things in detail, and I was assigned an extremely skillful ďInfectious Disease SpecialistĒ who knew what he was doing.  

Good luck to you, please keep us posted.  
Title: Re: Rocky mountain spotted fever
Post by: Ed_K on July 13, 2018, 08:18:02 AM
 Now a day you have to be aggressive when you talk with medical doctors and staff. I've had problems with medical staff not relaying information and when confronted they out right lied to upper staff saying they gave us the information needed. That's why Rita goes with me on every appointment. I may miss things because of my sickness but I know Rita won't.
Title: Re: Rocky mountain spotted fever
Post by: IMERC on July 16, 2018, 12:03:52 AM


Adamant and tenacious works better...
Title: Re: Rocky mountain spotted fever
Post by: yukon cornelius on July 16, 2018, 04:21:33 PM
I have been back to the emergency room with severe abdominal and kidney pain and was told to" suck it up " The physician read me the description of RMSF and side effects off his phone and then asked "what do you want me to do about it? I tried to explain that I don't go to the doctor or emergency room for just anything and that I had never felt so sick before. He just shrugged and walked out. He came back asked what would make us happy so I said I want someone to check me and help me find out if I am actually ok or not. he never looked at it touched either area. He sent us on our way.

This was On Saturday. I still feel terrible and have times of feeling really terrible. But, maybe I am starting to get stronger. 

I have decided to stop going to the doctor. God will either heal me or take me home. I am ready for either. 
Title: Re: Rocky mountain spotted fever
Post by: YellowHammer on July 16, 2018, 06:06:33 PM
Donít give in. Itís your health, pain and suffering, not his. Go find another doctor next big town over. Then go find a good lawyer.  
Title: Re: Rocky mountain spotted fever
Post by: Magicman on July 16, 2018, 06:13:29 PM
I agree with YH.  You need to be making a trip to Kansas City, maybe even instead of to the Pig Roast.  Right now your health is your most important priority.
Title: Re: Rocky mountain spotted fever
Post by: gspren on July 16, 2018, 09:24:06 PM
YC, You are much too valuable to your family and us to give up. Find a doctor that has experience with this and try again.
Title: Re: Rocky mountain spotted fever
Post by: yukon cornelius on July 17, 2018, 01:50:38 PM
I received a name for someone who specializes in tick diseases. I am going to check into that. I have times when I feel fine but weak and then an hour later I am feeling horrible again. Going out in the heat really sets it off. God is good and will take care of me. That is certain! 
Title: Re: Rocky mountain spotted fever
Post by: YellowHammer on July 17, 2018, 11:17:45 PM
Thatís great news. Keep fighting!
Title: Re: Rocky mountain spotted fever
Post by: doctorb on July 19, 2018, 09:56:20 AM
That is a positive development.  Take the time and effort and see an Infectious Disease expert.  The ER will not be a place that can help you in this instance.  Best of Luck.
Title: Re: Rocky mountain spotted fever
Post by: East ky logging on July 24, 2018, 06:15:33 AM
Hope youíre feeling better that is some bad stuff. Sounds like several members here has had rmsf and I would like to ask their opinion on something. I had it about 35 years ago when I was 12 and it was undiagnosed until I was almost over it. I almost died with it and Finally my kidneys started shutting down and whatever they was giving me for that helped me recover.
  My question is does anyone that has had it experience severe arthritis years later. I have been getting arthritis for at least 10 years and itís almost in every joint and almost disabling. Iíve asked the orthopedic doctor about that he he said he hasnít heard about that happening but anything could be possible.
Title: Re: Rocky mountain spotted fever
Post by: DPatton on July 24, 2018, 10:36:57 PM
Yukon, 

 Please take YH, doctorbís, and others advice to find a Dr. who specializes in this type of infection. I understand just how very frustrating it is when a person pays through the nose for treatment and isnít receiving satisfactory results. But sometimes you gotta pay up and bring in a second opinion to get adaquate treatment. Itís time for that second opinion. Best of luck to you with this desease and please Keep us posted about the second opinion.
Title: Re: Rocky mountain spotted fever
Post by: YellowHammer on July 24, 2018, 11:00:43 PM
East Ky, I am 53 years old and have left over side effects I sometimes attribute to the disease.  I did have mild arthritis onset at a relatively young age but I donít know if itís directly related.  I needed a hip replacement at 52.  My eyes were immediately affected, and I lost some visual acuity.  My skin burned and peeled off like a snake, which was pretty cool to see.  My immune system was whacked hard, and not right for years.  The RMSF is a really devastating disease, as evidenced by your experience.  Itís like being hit by a train, but only on the inside.  

Although there are rare joint inflammatory disorders that can be triggered by RMSF, such as Adult Onset Stillís Disease, (AOSD) most times severe joint pain due to tick bite is a fundamental symptom of Lyme disease, and can manifest years after being bitten.  

I would consult with an infectious disease specialist, a tick doctor, and get his thoughts and opinions.  

Ticks are nasty critters.  


Title: Re: Rocky mountain spotted fever
Post by: yukon cornelius on July 28, 2018, 01:09:25 AM
I have an appointment with a highly recommended tick specialist in September. I have had a CT scan and a colonoscopy. The first doctor wants me to have exploratory surgery to find out why I have so much kidney and abdominal pain. I think not! I had a couple good days and then it was back with fury for a couple days. I went to a new doctor. She was very knowledgeable of this and I believe she is going to help me. She gave me something to get my GI tract lined out and something to help me sleep. I haven't slept much still but I was back in my feet today. She did not sugar coat it and tells me this may take a long time to get over. She said at least she could make me more comfortable while I am healing.

God is good and healing is in his hands. 

Thank you all for the kind words and encouragement. 
Title: Re: Rocky mountain spotted fever
Post by: Magicman on July 28, 2018, 07:30:29 AM
Thank you for the update.  My Prayers for you are for Healing Grace.
Title: Re: Rocky mountain spotted fever
Post by: YellowHammer on July 28, 2018, 08:35:46 AM
Good for you.  Iím glad to hear you are being pro active.  
Title: Re: Rocky mountain spotted fever
Post by: Bruno of NH on July 28, 2018, 03:47:58 PM
I'm glad you found a Dr who will help you.
Prayers sent
Title: Re: Rocky mountain spotted fever
Post by: Ron Scott on July 30, 2018, 11:39:47 AM
Yes, a specialist in tick diseases is definitely needed.
Title: Re: Rocky mountain spotted fever
Post by: yukon cornelius on August 08, 2018, 08:51:36 PM
I was lucky enough to get my appointment moved up to yesterday morning due to a cancellation. I had had a few really good days and then ended up sick on the way home from Michigan Michigan and been sub-par ever since. This specialist was very thorough. He spent over 3 hours with me. Prior to going in he had mailed us a thick questionnaire. We went over it and checking things as we went. He thought it was clear the Doxycycline did not work. He feels it could be a Lyme disease strain along with RMSF . He drew blood for it to send for a different type of blood test. A Blot test. I had read prior that test was more reliable. He also feels i got Candida, a yeast i nfection, in my digestive system from the antibiotics. That explains the bloating and some pain. I am also being checkups heavy metals which is common in tick borne illness. I understand it makes it more difficult to expel them and they build up. He wants me to see a cardiologist because my 12 lead shows I had an inferior infarct. there is a lot of more information he gave us and told us. He has a nurse in the room taking notes through the visit because there so much covered. We get a copy of them to help us understand and remember. I am glad to get in to him. I believe he can get me back in my feet.
Title: Re: Rocky mountain spotted fever
Post by: thecfarm on August 08, 2018, 09:19:56 PM
Sounds like he's a keeper!!!
Title: Re: Rocky mountain spotted fever
Post by: Magicman on August 08, 2018, 09:54:35 PM
It was so good to read that you got to see the Dr. earlier than expected and Thank You Larry for the report.  I am looking forward to reading that you have succeeded in beating this beast.

My Prayer is for Healing Grace.
Title: Re: Rocky mountain spotted fever
Post by: Bruno of NH on August 09, 2018, 07:32:10 PM
I'm happy you got in with the specialist. 
I hope they find a quick diagnoses. 
Title: Re: Rocky mountain spotted fever
Post by: YellowHammer on August 09, 2018, 10:46:29 PM
These multiple diagnosis make a lot of sense to me.  I'm glad you got to somebody who can help. 
   
Title: Re: Rocky mountain spotted fever
Post by: yukon cornelius on September 10, 2018, 11:12:15 PM
So much has happened since the last post here. I got the tick blood test back. I was positive for two masters disease. That is Missouri Lyme disease strand. Also a heat resistant strand, a biofilm  strand and one other i cannot remember. I was tested for heavy metals and I am highly toxic with lead and mercury. I start 3-6 months of IV chelation for that soon. I tested very low for testosterone so starting medication for that. I saw the cardiologist today and they are scheduling a chemical stress test. He seemed a little concerned. Also today I had blood drawn to test me for lupus.

I have had a few good days and several i could not function. For a couple weeks i was not able to dress myself or get up the stairs to the bedroom. I have bouts of horrible shuddering and tremors. I had been falling a lot and unable to get up on my own. Then it cleared up for a while. A few nights ago it came back.  I needed help getting my clothes changed and ended up in the floor. My wife got me up and then I fell of f the toilet trying to get up. I had to have help up. Since then I am getting strength back slowly. I just stumble around like I am drunk. 

This is pretty tough to handle. I have always been very self sufficient. I will get past it i know and I know God has a plan for it. 
Title: Re: Rocky mountain spotted fever
Post by: IMERC on September 11, 2018, 12:05:42 AM
YIKES!!!
here's pulling for you and yours....

but I gotta ask...
why the presence of heavy metals?
Title: Re: Rocky mountain spotted fever
Post by: thecfarm on September 11, 2018, 06:15:47 AM
I sure do hope the DR, can found something that will help you out.
Title: Re: Rocky mountain spotted fever
Post by: Peter Drouin on September 11, 2018, 06:38:15 AM
Get the rest of the family tested for the lead and mercury.
And find the source.
Title: Re: Rocky mountain spotted fever
Post by: YellowHammer on September 11, 2018, 08:50:14 AM
Cripes!  Heavy metal poisoning! What Peter said, you need to find the source faster than ASAP.

Iím surprised your Dr. hasnít alerted the local health department, and they start an investigation to find out how you are exposed, and if it is work related related or if you are getting exposed somewhere and somehow, elsewhere.
Title: Re: Rocky mountain spotted fever
Post by: Magicman on September 11, 2018, 11:37:30 AM
It's alarming to hear/read your above reply Larry.  Our Prayers will continue for your source investigation, diagnosis, and recovery. 
Title: Re: Rocky mountain spotted fever
Post by: yukon cornelius on September 11, 2018, 02:25:45 PM
We are in lead country. There were several lead mines around our area. We are getting that tested. Not sure if it could come from cedar dust. I need to research that. Next is a real possibility. I have been a firefighter since 1996. Could have came from that. 

The whole family is getting tested. It is a bit scary. 

The specialist who ordered the test says that lyme disease causes my to retain metals and not eliminate them as a normal person. He has been right with everything he has suspected so far. 

For starters we installed a heavy metals filter on our faucet. We only drink and cook with filtered water. 
Title: Re: Rocky mountain spotted fever
Post by: LeeB on September 11, 2018, 03:01:17 PM
Chelation will clear your arteries too. 
Title: Re: Rocky mountain spotted fever
Post by: bwstout on September 11, 2018, 04:30:44 PM
Sure hope all works out ok in our prayers.
Title: Re: Rocky mountain spotted fever
Post by: Ron Scott on September 12, 2018, 06:22:39 PM
Not good for sure! Hope its figured out soon. 
Title: Re: Rocky mountain spotted fever
Post by: Bruno of NH on September 15, 2018, 04:10:07 PM
Prayers for you Larry.
Title: Re: Rocky mountain spotted fever
Post by: Lko67 on October 16, 2018, 05:52:07 PM
Prayers to you I've been down the Lyme road. Had Lyme,Rocky mtn spotted fever and q fever. Took 3 years until it was figured out and my lyme doctor said I had 6 to 8 weeks to live. Couldn't walk 20 yards without stopping to catch my breath. Q fever was attacking my heart and lungs. You are your best advocate and know your body. Getting a good doctor is half the battle.
Title: Re: Rocky mountain spotted fever
Post by: yukon cornelius on November 06, 2018, 09:59:43 PM
Update, chemical stress test came back on with only minor mitral valve insufficiency. I am still having issues. My primary physician sent me to another doctor for a consult. He sent me to a neurologist. I had a MRI on my brain today. This coming week i go see a rheumatologist. He also wants me to see an infectious disease doctor, and a urologist. I see the tick specialist towards the end of the month. I could use prayers. 
Title: Re: Rocky mountain spotted fever
Post by: Magicman on November 06, 2018, 10:22:35 PM
Thank You for the update Larry.  My prayer is for Healing Grace.
Title: Re: Rocky mountain spotted fever
Post by: LeeB on November 07, 2018, 12:48:51 AM
Been thinking about you a lot lately. My neighbor is going through the same thing. I'm pretty sure she is seeing the same specialist.
Title: Re: Rocky mountain spotted fever
Post by: thecfarm on November 07, 2018, 06:10:39 AM
You're going to be busy seeing all them Doctors. :o   But something needs to be done and get some answers and get you on the feeling better list.
Title: Re: Rocky mountain spotted fever
Post by: Bruno of NH on November 08, 2018, 05:26:10 PM
Larry
Prayers sent