Testing questions for RMSF

[chanson]

I am 52 and have emphysema, migraines, fibro, etc.  When I was camping in KY, I was bit by a tick. We found the tick after it was bloated.  About a week after I got home I came down terribly ill. I have been tested 3 times in the last year for Lymes.  My lyme testing has come out negative however each time I have had an 'indeterminate' on RMSF.  The dr. I spoke with today told me that at one point after being bit by a tick I had RMSF. Everything I have read on RMSF states that only a small percentage get the serious symptoms of the disease.  Can you have less serious symptoms?  Can these symptoms recur?  Can they recur to the point that you do not feel any better?  Most of the symptoms I have mimic fibro, except for the low grade fevers. Can you please give me your out look on this?

[chanson]

Thank you for the info Sooner.  When I came down sick with the rash I didn't go to the drs. however when I came down sick the second time and found the tick I went to the drs.  Why did your friends testing take so long?   I had mine in about 2 days.  The dr. (in TN)  I saw said I did not have lymes and therefore needed no medication, but he did the testing. Of course 4 days later I went in with a spider bites AND 3 spiders--he said they were not a brown recluses and not to worry about it--I still have the scars on my legs.  

A friend of mine knows the professor of entomology in OH--I sent the tick and the spiders to her.  She was a very nice person and she identified them as brown recluses and the tick as a lone star.  She also told me the first time I came down ill it was possible I did not see the tick.  

And you are not going to believe this..I have to be in the hospital tomorrow a.m. for an endoscopy.

I have learned more about tick diseases from the web sites you have sent me, in the last two days then any dr. has ever told me.  I feel I am going to have to look out of state for a LLMD.  NY, MA neither state are very far away.  

Again, thank you and I will let you know what happens.

[SOONERMOM]

We  recently had a friend (who lives on acreage) come down with RMSF symptoms, very high fever, bad headache and when the rash showed up...he FINALLY went to the urgent care.  They did a test for RMSF, but gave him doxycycline anyway because they said it would take a while to get the results back.  He did get better, but never heard if his test was positive.  It's funny that you mention intestinal problems, because months later  he started having problems and they were trying to tell him he had crohns disease.....the colonoscopy showed otherwise, fortunately.

We live in one of the states with the most cases of RMSF, and they were still telling him that it could be viral.  AT LEAST he did get doxy.  Did they EVER treat you??
I did hear about someone dying from RMSF in OK this year,  I think there are a few every year here.  I found this on wikipedia

"Rocky Mountain spotted fever remains a serious and potentially life-threatening infectious disease today. Despite the availability of effective treatment and advances in medical care, approximately 3% to 5% of individuals who become ill with Rocky Mountain spotted fever still die from the infection. However, effective antibiotic therapy has dramatically reduced the number of deaths caused by Rocky Mountain spotted fever; before the discovery of tetracycline and chloramphenicol in the late 1940s, as many as 30% of persons infected with R. rickettsii died."

I think most doctors are CLUELESS about tick borne infections.  You  know the lone star tick carries the other type of borrelia that there isn't a test for, Borrelia lonestari.
They call this STARI, southern tick-associated rash illness.  My LLMD said that a lot people won't test positive on the lyme tests if they are infected w/this.

Here is some info on ehrlichia (a rikettsial bacteria, same class as RMSF).
http://www.cdc.gov/ncidod/dvrd/ehrlichia/Q&A/Q&A.htm
It says it is also  carried by the lonestar tick.

Anyway, you need to find an LLMD to help you ASAP!  The people on lymenet are very helpful, that is how I found my dr.

It is VERY typical for patients with tick borne infections to go from dr to dr, not finding any help.  That is what I did for 6-7 months (which is short compared to many)  I will never feel the same about the mainstream medical community.  

I am hoping that one day this won't be such a controversial disease(s) and doctors will become more educated and willing to treat it!!!

Come back and let us know how you are doing!

[patsy10]

I was very negative for a time too so I totally understand.  You may want to go to lymenet.org and post under "seeking a doctor".  I think you need another opinion.   It really does sound like it could be a tick-bourne disease.

[chanson]

Hi, Sooner and Patsy,  Thank you for replying so quickly.  After talking with my partner, he reminded me that just prior to going camping (we were staying in TN at the time), I did in fact come down with the flu (we figured weather change) plus I normally run high fevers when I come down sick, a horrible headache intestinal disorders and had a rash. I honestly forgot about that rash.  But, my partner had me convinced me that I had gotten into poisonous plants walking the dogs. I have never had any allergies to poison ivy, oak, etc.  And then 2 weeks later we were camping at the horse stables in KY.  And a week after coming back I had the same symptoms again--I found the tick then.  (It was a lone star tick--a dot on its back).  It is just so hard to find a dr. up here. I hate to say this but, a dr. that has possibly lost or had his license revoked in another state would find it easy up here. I just want to know what is wrong with me.  And I have yet to find a dr. here that listens to the patient.  HA! I have not met 'my' dr. yet--the only person I have seen is his nurse.  The last time the symptoms cropped up bad I went in--She told me I had a cold and I was dieting????  You wouldn't believe how bad I felt and hurt that day.  I got up and walked out.  Patsy, from what I have read RSMF is life threatening--that's why I don't know why 3 tests would show inconclusive on RSMF--surely, I would have known if I had that....  Most assuredly the drs. here wouldn't.  Thanks again--and sorry for being so negative.  If you had known me a few yrs. ago, I would have made a joke about the whole situation--I don't laugh much anymore.....

[patsy10]

Sounds more like lyme to me.  You have to look beyond testing.  I'm not as well versed on RMSF but a friend of mine's brother got it and nearly died.  I think it can be life-threatening but I'm no expert.  My friend said his brother had the RSMF rash as decribed above.

[SOONERMOM]

I would also post this question on lymenet.org.  

There are many possibilities here.  I have heard of  chronic RMSF, but I don't know how common it is.  Did you take doxycycline when you became ill?  Did you initially spike a high fever, have terrible headaches, and then get the rash (that is pretty obvious and can be on the palms of hands and soles of feet)?  

You could have more than one bacteria causing you problems here.  Ticks carry more than just borrelia (lyme) and RMSF.  There is bartonella, babesia, mycoplasma, and ehrlichia (which is in the same family as RMSF)..makes me wonder about the indeterminate on your testing???  
http://www.nlm.nih.gov/medlineplus/ency/article/001381.htm

Testing for lyme disease is not the most reliable.  I am sure that you had the screening test like an ELISA or IFA, I think they are like 60% accurate.  Mine was negative, but when I took the Western Blot (through a lab called IgeneX) it was positive.  IgeneX  is a lab that specializes in tick  borne infections.  They also test for these other bacteria that ticks carry.

I think you need to be seen by an LLMD that could get to the bottom of what is going on with you.  They are very knowledgeable about all the various diseases caused by ticks.  It is obvious that your problems were  initiated by that tick bite.  You just need to determine WHAT you are dealing with and treat it appropriately.