What about lyme disease?? I know RMSF is a bad disease. I know of someone who had it and almost died. A smart ER doctor figured it out. It was years ago. He has all kinds of joint damage and other problems from it.
Thank you so much for your quick response. I could still have lyme also. The test came back neg. for lyme, but that can happen. Do you know what kind of treatment your friend received and how long was he sick? It has been three months and I have taken 8 days doxy, then 21 days amoxicillin, now I am on doxycycline again. I am supposed to see an infectious disease dr. Thursday. It is ashame when you count down the days to a dr. appointment because you feel so sick. Hopefully there is something they can do. Or am I going to have to live with this illness????? Again, thank you for your response!
I don't know the exact treatment because it was someone I work with's brother. It also was a few years ago. I will ask him. I know he said his brother is still not right to this day. He has all kinds of spine damage from it. Doxy will work for lyme too as you probably already know. Did you have the RMSF rash all over?
I know its been a while since your post, but wanted to chime in. I was diagnosed with RMSF in January 2007 after being tested for several other possibilities through November and December. Thankfully, it wasnt a severe case or I could have died in that amount of time, but I did take amoxicillin in December for general infection--ie the rash, fever, headaches, fatigue. Once officially diagnosed on Jan. 1, I was placed on Doxy for 6 weeks and my symptoms continued, as well as , soreness, joint pain in my knees, depression, sense of delirium at some points..it was hard to pinpoint if it was all related..but im sure it was. I saw an infectious disease doctor in Fairfax, Va after near completion of the Doxy. He said the titer level had gone away for RMSF, so i figured all was ok. From everything I have read, RMSF is treated and cured--however, after a severe amount of stress due to my job I got sick again this past fall.
HERE IS THE STINGER--Come to find out, I was re-diagnosed with RMSF this past week after having symptoms repeat in December--fevers, headache, a couple red spots on my arm, fatigue--and back on treatment again. I have no idea how it is possible or even that it was possible if you have an immune system breakdown, etc. While I never saw a tick in the first place, I assume I got it from working in my yard in Fall 2007, but I doubt I got one again to make it reoccur.
They ruled me out for Lyme, which I hear is something that is chronic. This RMSF is definitely a mystery and the fact I cannot pinpoint what is happening to my body as a result is something i worry about.
That being said, I advise you to monitor yourself over the next year, and get tested periodically after being treated, esp if you undergo any great amount of stress or breakdown of immune system.
My uncle (55) the example of perfect health-Never Smoked or Drank) has been seen by numerous Specialists, since 2005! been tested for everything under the sun. He went from serious flu-like symptoms, to truly almost dying about three times, he believed he was close to death. Everything from nausea, passing out, weight loss(50 lbs.), no sleep (afraid he would die), super high fever three weeks at a time, NO appetite, vomitting, And a very very strange sensation in his head, which he still says he cannot explain it, (he cant put it to words, feels like crawling), but it is a freightening sensation to him, it actually creates a fear & sense of urgency where he calls for someone, anyone in the house to come help, He says also, the actual sensation wakes him up from a dead sleep! He was never told anything but "probably just a virus" no explanation! he eventually got better slowly over 7 months, Then at the exact time of year the following year he said it started again! this time he said the way he felt (the feelings & sensatoins he felt when he finally started to get better the first time around) is how he felt when it started the second time. He no longer goes on rollercoasters says that it can Trigger the feelings in his head? He lives in Maine, does construction, and is a lumberjack type guy. When I said he was tested for everything I mean everything, the last specialist was for luekemia and other types, that Dr said he has the body of 25 year old perfect health! Any DOCTORS please help! What could it be??? I believe ha has not come across the right Doctor!!!
He could not have possibly had full lyme workup unless it was done through Igenix or MDL-the current tests for lyme miss most cases of late dignosed lyme go to lymediseaseassociation.org and find him a good lyme doc- They are few and far between but there is one I believe in amesbury ma. Don't bother withDonta- he is not treating properly anymore- Read Cure unknown and see the documentary Under our Skin , both new, and you will understand why late lyme is missed and the tests are TOTALLY unreliable. There is hope if you can find the right doctor. I still haven't and suffer every day- We all know what it is but oral antbiotics are not enough once lyme has settled in to the brain and CNS. You need a abx that crosses the blood brain barrier, so a bottle of doxy or tetra will not cut it. Also co-infections are problematic and missed , again because of unreliable testing in the avergae labs. If he had a western blot ask for the copy of it and research it. their could be one positive band significant to lyme but because it has been a while don't expect to see any, but even one could be indictive enough - Lyme is supposed to be a clinical dignosis soey due to the poor testing. Doctors NEED to understand they cannot rely on the cdc's information. All very political at the expense of some seriously ill people.
I know you started your post around mid 2007. Just in case you ever check the site again after so long I was hoping to hear how you were feeling. I have been unable to work for eight months now due to RMSF. It's driving me nutts because no doctor has been able to give me any relief. I have always been in good shape and never sick untill this. I have a job but my body will not let me do it. I'm a 48 year old man in a 88 yrar old mans body. So let me hear some good news.
Ask your doctore is CoQ-10 and fish oil pills are ok for you to take. You can get them at Vitamin stores. The CoQ-10 is for cardiovascular support and my husband started taking it for his RMSF and got immediate results. He felt much better. Supposedly taking it with fish oil is also supposed to help so he is also doing that. We found this suggestion posted on the internet by someone with RMSF. His Disease Specialist doc had recommended it to him. Good luck to you.
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