Rocky Mountain Spotted Fever Support Group

Rocky Mountain spotted fever is the most severe and most frequently reported rickettsial illness in the United States, and has been diagnosed throughout the Americas. The disease is caused by Rickettsia rickettsii, a species of bacteria that is spread to humans by hard ticks.

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New to group- Lasting Effects of RMSF

Hi,
My name is Angie and I am new to the support group here, hoping I can make some great connections with people who can relate to the disease. I was diagnosed about 7 years ago and finally tested negative after about a year of treatment (tetracycline and doxycyline). I wish it ended there. Ever since I have had muscle and joint pain, I am tired and do experience headaches frequently. I want to work out and exercise but I am afraid of it just making me hurt more. Has anyone else experienced these long term effects? If so, how do you deal with pain management. Up until recently, I wouldnt just deal with it, but it seems the older I get (I am 29 now), the worse the pain. I would like to try natural remedies rather than medications so if anyone has any solutions that would be awesome.

Please share your thoughts and ideas. I am so afraid of this continuing to get worse and I am so young. Right now, I feel doomed if I am being honest. Some relief, any relief would be great.

Thanks for listening!!

Replies

deleted_user
deleted_user

I am seeing a pain specialist/neurologist for the severe neck pain and headaches I am getting from the RMSF. I had an epidural injection which didn't work, and go tomorrow (10/24/2013) for a facet injection. I can let you know if that works if you want.

I have days where I can't even get out of bed because I am in so much pain. I just want it to go away. I understand the feeling of doom - I definitely have it.
angelanscottturner
angelanscottturner

Hi I'm angela and I'm new here. I'm recently diagnosed but have been sick for almost a year. I am seeing infectious disease tomorrow. I'm on my second round of doxy with no luck. I feel yuck! My body hurts but the best thing I have done for myself is supplements. I'm doing thrive and if it were not for that I could not get out of bed. Hope this helps somebody!
someonewholovesu
someonewholovesu

http://lassesen.com/cfids/documents/JADIN_Rickettsial.pdf
This article is very interesting and speaks to lasting effects. My husband was diagnosed a few years ago and appears to have it again...he is on another round of antibiotics...it's day one of the antibiotic and he is sore but with less pain...this should be interesting...will post again soon
someonewholovesu
someonewholovesu

Also, has anyone noticed an improvement with the addition of iron pills?
someonewholovesu
someonewholovesu

So hubs felt better on second treatment of doxy but once it was over he immediately felt worse. He also has the alpha gal mammalian allergy from a different tick bite. We suspect that his pain and inflammation may also be related to additional food allergies he may have developed. He is going to see an allergist soon. Will post findings after that appointment. I suspect nightshades worsen his inflammation response and that he may be allergic. Specifically he seems to be in more pain after consuming potatoes or anything with potato as an ingredient. He is drinking ginger and manuka honey tea in the mornings and taking iron, echinacea, probiotics and B12. When he skips the ginger tea he has noticed more inflammation (costochondritis in his chest). So I think this tea is actually helping reduce inflammation. Hope this helps. Hope you all feel better soon. Please keep me posted on what works and doesn't work for you.
escoffee
escoffee

Yes. After 14 years I still have a tick titer of 68 because I didn't have any symptoms and it lived with me for 5 months before treatment was started. The only way that I'm not sick all the time is by taking doxycycline every day. You really need to talk to your doctor about your symptoms and see what he says. It really can cause long term problems and he is the best person to help you deal with him, because they definitely sound like the sort of problems that this ugly bacteria causes.
escoffee
escoffee

You have my sympathy. I got this stuff about 15 years ago and still have a tick titer of 68. My doctor doesn't think it will change. I have a lot of the same problems. Try to exercise whenever you are able, that helps some, especially with pain. Hope it gets better.
cash
cash

Hi, I'm new to this group and would like to know if anyone else has the symptoms I do. I got RMSF in 2017 when I was 70 years old. By the time they found out I had RMSF I was almost over it and I only took medication for about one week. Now I have migraines every morning and it takes about an hour to get my eyes open and my oxygen level back up to get out of bed. My eyes are very sensitive to light and they keep changing and I need new lenses every few months. They told me I'm not getting enough oxygen in the blood and that I need to use a c-pac machine at night. I have tried to use the c-pac for three months but I fight it all night and feel worse in the morning. Am I going crazy or does anyone else feel the same way I do. I have always been an active person and nothing bothered me but now I feel like no one believes these symptoms are from the RMSF.
Thanks, Cash
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