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Rocky Mountain spotted fever. Diagnosed this week
I have been thru what feels like a battle forever, although in actuality Friday will be a month. This whole thing started with severe fatigue, confusion, feeling feverish with no fever, extreme muscle aches. Long story short... Went to 8 doctors... Including specialists, and two er visits ... All with mostly increasing worse symptoms. I finally go back to my general practitioner and get a call from her Tuesday saying I tested positive for rmsf. She started me on doxycycline last week... Just to be on the safe side she wanted to get it started. But she is sending me to an infectious disease specialist Friday. I dunno what to expect really from that... I'm so desperate though my life is on the couch. I literally can't get up without feeling like I will faint or extremely nauseated. I can't drive. Haven't worked in a month so am in a really rough spot. I'm scared because all the forums I see are people saying they basically never feel better. I guess I am just looking for someone to talk to. No one in my life seems to understand my desperation. I've read this is a disease that can be fatal.. And as a 24 year old newlywed ( only been married 2 months) I'm terrified for my future. Also... The past few days I've had a pressure on the right side only of my throat. It literally feels like someone has their finger and is pressing into the side of my throat. Could this be caused by swollen glands ?
Hi, welcome to Medhelp.
In my non medical opinion this could very well be a co-infection of Lyme disease which is just like Rocky Mountain Spotted Fever called Bartonella. Most of us did not ever get the round rash that most mainstream doctors say you should get from a tick bite.
Swollen lymph nodes, joint pain and stiffness , confusion, fatigue are a sign of Lyme and bartonella. I have both of those illnesses too plus another co-infection called Babesia which is like Malaria.
I would suggest going to our association website ILADS.org and email them to ask them for an LLMD (Lyme literate doctor) closest to where you live. An LLMD can be any kind of doctor but one who does more research on the illness. These doctors use a special lab called IgeneX. They can test you for Lyme and also have them test you for co-infections. While on the site, go to Burascano's treatment guidelines and read up on the signs and symptoms of Lyme and Bartonella. Also google IDSA (infectious Disease Association) and ILADS and you can read about the conflict. Knowledge is power.
Infectious Disease Doctors don't believe in chronic Lyme. It is great that you started doxycycline but a regular doctor usually will not give you more than a few weeks worth of the medication. You will need longer. If you have Bartonella you will need a different antibiotic as well.
We understand how you feel and many of us have experienced it as well. Many of us have become bedridden and worse that is why you need to treat it properly and quickly.
We are here for you. Congrats on your marriage.
In my non medical opinion this could very well be a co-infection of Lyme disease which is just like Rocky Mountain Spotted Fever called Bartonella. Most of us did not ever get the round rash that most mainstream doctors say you should get from a tick bite.
Swollen lymph nodes, joint pain and stiffness , confusion, fatigue are a sign of Lyme and bartonella. I have both of those illnesses too plus another co-infection called Babesia which is like Malaria.
I would suggest going to our association website ILADS.org and email them to ask them for an LLMD (Lyme literate doctor) closest to where you live. An LLMD can be any kind of doctor but one who does more research on the illness. These doctors use a special lab called IgeneX. They can test you for Lyme and also have them test you for co-infections. While on the site, go to Burascano's treatment guidelines and read up on the signs and symptoms of Lyme and Bartonella. Also google IDSA (infectious Disease Association) and ILADS and you can read about the conflict. Knowledge is power.
Infectious Disease Doctors don't believe in chronic Lyme. It is great that you started doxycycline but a regular doctor usually will not give you more than a few weeks worth of the medication. You will need longer. If you have Bartonella you will need a different antibiotic as well.
We understand how you feel and many of us have experienced it as well. Many of us have become bedridden and worse that is why you need to treat it properly and quickly.
We are here for you. Congrats on your marriage.
Igenex (the best specialty lab for tick borne diseases) has been testing for RMSF for at least a couple of years and doctors have been treating for it. I don't know anyone personally who has or was treated
They do a test for the Rickettsia Species PCR on whole blood. If you're in NY there is a separate test.
Dr B's Guidelines (the poster above mentions his full name) found on ILADS web site only mentioned RMSF in passing only because it's caused by a tick. Since those guidelines were published it's become another tick borne illness, separate from the other co-infections.
Back to your illness. That's good that you were started on doxy, the first antibiotic of choice for RMSF and Lyme.
Be careful, you can get sunburned while on doxy. Try to get the doctor to continue doxy for as long as you can!
But at least it's a start.
Please try to find a doctor through the site that Mojo directed you to. With the exception of a few doctors who seem to be 'off the wall' you'll be tested and treated by the best.
The forums, like this, are mostly populated by people who didn't get treated quickly enough or for too short a course of antibiotics! The one who did get better (with long term treatment) have gone back to 'their lives' and don't often come back.
About 'fatal' RMSF------ Yes, untreated. You're in treatment and past the dangerous stage, if you ever had one. If it were me, I'd find a doctor through ILADS who won't undertreat you. So put the worry about 'fatal' out of your mind.
They do a test for the Rickettsia Species PCR on whole blood. If you're in NY there is a separate test.
Dr B's Guidelines (the poster above mentions his full name) found on ILADS web site only mentioned RMSF in passing only because it's caused by a tick. Since those guidelines were published it's become another tick borne illness, separate from the other co-infections.
Back to your illness. That's good that you were started on doxy, the first antibiotic of choice for RMSF and Lyme.
Be careful, you can get sunburned while on doxy. Try to get the doctor to continue doxy for as long as you can!
But at least it's a start.
Please try to find a doctor through the site that Mojo directed you to. With the exception of a few doctors who seem to be 'off the wall' you'll be tested and treated by the best.
The forums, like this, are mostly populated by people who didn't get treated quickly enough or for too short a course of antibiotics! The one who did get better (with long term treatment) have gone back to 'their lives' and don't often come back.
About 'fatal' RMSF------ Yes, untreated. You're in treatment and past the dangerous stage, if you ever had one. If it were me, I'd find a doctor through ILADS who won't undertreat you. So put the worry about 'fatal' out of your mind.
Hi, due to my memory loss and brain fog, I made an error. RMSF is not like Bartonella. It is a tick borne illness and doxycycline is the medication to take for it. Everything else I said above still stands. I apologize for the error. One of the side effects of the illness. :(
That's O.K. We all can make mistakes. I do appreciate you coming back with the acknowledgement. Very nice of you.
Borrelia miyamoto ('newly' discovered species in the U.S.) is included with the relapsing fever grouping of species.
"finding B. miyamotoi s.l. in I. scapularis, I. ricinus, and I. persulcatus, the predominant vectors of Lyme borreliosis in North America, Europe, and Asia, respectively, complicates interpreting epidemiologic studies of Lyme borreliosis and other ixodid-borne disorders."
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3320305/
"finding B. miyamotoi s.l. in I. scapularis, I. ricinus, and I. persulcatus, the predominant vectors of Lyme borreliosis in North America, Europe, and Asia, respectively, complicates interpreting epidemiologic studies of Lyme borreliosis and other ixodid-borne disorders."
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3320305/
Thanks everyone for the support. I actually already got the name of a llmd from my gp. He is about 7 hours from me, and since I've been out of work I really don't know if I would be able to make it work. I've seen a few ( very few but still) say that they have had luck with the infectious disease dr so maybe the one that I am going to will actually help me. I sure hope so! I know with lyme, its common to have good and bad days. Does anyone know if its the same with rmsf ? I'm asking because for example this week I had a day where even though I was still exhausted I felt like maybe I was on the path to somewhat normal again. But the next two days that followed were the worst of all. Is this common with llmd? Also my gp gave me a month of doxy. I wonder if that will be enough....
Its very common to have good and bad days with Lyme and co-infections.
With Lyme and co-infections we get what is called a herxheimer reaction (herx for short). That is when you are on an antibiotic and you have a die off of the bacteria. You feel much worse for a while because the antibiotic is doing what it is suppose to do, kill the bugs. The toxins from the dead bugs going through your body gives that bad feeling. Some people detox better than others and therefore don't feel as bad.
There are different things like activated charcoal, chorella, and a few others that you can take to try and reduce this bad feelings.
I don't know much about RMSF to say that 1 month of doxy is enough. With Lyme if you catch it within days, 1 month should be enough. I would feel better with longer than a month but that is because I know how sick you can get if it is not treated properly. As I mentioned above, severe brain fog and memory loss and more is possible if left untreated.
I would google and learn as much as you can. I wish you luck with the ID doctor and hope you get a good one. :)
With Lyme and co-infections we get what is called a herxheimer reaction (herx for short). That is when you are on an antibiotic and you have a die off of the bacteria. You feel much worse for a while because the antibiotic is doing what it is suppose to do, kill the bugs. The toxins from the dead bugs going through your body gives that bad feeling. Some people detox better than others and therefore don't feel as bad.
There are different things like activated charcoal, chorella, and a few others that you can take to try and reduce this bad feelings.
I don't know much about RMSF to say that 1 month of doxy is enough. With Lyme if you catch it within days, 1 month should be enough. I would feel better with longer than a month but that is because I know how sick you can get if it is not treated properly. As I mentioned above, severe brain fog and memory loss and more is possible if left untreated.
I would google and learn as much as you can. I wish you luck with the ID doctor and hope you get a good one. :)
Thank you so much :) and I have been doing a ton of googling ... Most of the info I can find is on lyme and not really rmsf though... I actually already have the severe brain fog, it was one of my first symptoms. I also sometimes have to have ppl repeat things several times before I can comprehend it :( hoping I can get this turned around. Thanks for responding ! Do you have any info on how to detox ?
Glad you are being proactive. Good for you!
The way I detox is by taking activated charcoal. You have to take it 2-3 hours before or after your antibiotics. It might be helpful to take a probiotic, magnesium and Vitamin D as supplements while going through this.
The well written doctor James Schaller suggests 4-6 pills at once for detox.
I take 6. They are inexpensive and OTC.
Yes, that brain fog is terrible. I can drop something on the floor, but it might take me awhile to comprehend that I must pick it up. My girls (grown) are use to the fact that I don't remember things. Frustrating. It does get better.
Let us know if you have any other questions. We are here for you.
The way I detox is by taking activated charcoal. You have to take it 2-3 hours before or after your antibiotics. It might be helpful to take a probiotic, magnesium and Vitamin D as supplements while going through this.
The well written doctor James Schaller suggests 4-6 pills at once for detox.
I take 6. They are inexpensive and OTC.
Yes, that brain fog is terrible. I can drop something on the floor, but it might take me awhile to comprehend that I must pick it up. My girls (grown) are use to the fact that I don't remember things. Frustrating. It does get better.
Let us know if you have any other questions. We are here for you.
Thanks ! Where can I buy activated charcoal ? Well... The infectious disease doctor was a bust.. Came in and immediately said well... I know your blood word was positive but you've been on antibiotics a week now.... Rmsf is very easily cured with doxy and since its not helping you so far you have another issue. So basically he decides to do a panel of bloodwork and cultures.... Because he is convinced its something else. I feel so baffled that this man has POSITiVE blood work and someone who has 99% of the symptoms yet he refuses to acknowledge it! This is so insane to me !
Sorry that you had to go through that.
I can't remember if I told you to google IDSA vs ILADS to get the information on the battle between Infectious Disease Docs and LLMD.
You can get activated charcoal at any health food store or some place like Amazon.
It is insane and maddening to all of us. Ugh.
I can't remember if I told you to google IDSA vs ILADS to get the information on the battle between Infectious Disease Docs and LLMD.
You can get activated charcoal at any health food store or some place like Amazon.
It is insane and maddening to all of us. Ugh.
"This is so insane to me !"
It's insane for all of us. We keep hoping that a newcomer will find an Infectious Disease doctor that will help. We're almost always disappointed and I know you are too.
I'm getting very disillusioned about the acronym 'LLMD'. It used to mean a doctor who took Lyme and cos seriously and treated accordingly.
Now I read so many people saying 'they found an llmd' and my heart almost sinks because so often the doctor will say "yes,I treat Lyme" and what he means is "I'll undertreat Lyme and you'll still remain sick and you'll have to keep coming back here for test after test". Then he'll wind up giving you an antidepressant.
Argggh! Time to eat my BBQ Chinese ribs and fergeddaboutit. "It" being the insanity of it.
It's insane for all of us. We keep hoping that a newcomer will find an Infectious Disease doctor that will help. We're almost always disappointed and I know you are too.
I'm getting very disillusioned about the acronym 'LLMD'. It used to mean a doctor who took Lyme and cos seriously and treated accordingly.
Now I read so many people saying 'they found an llmd' and my heart almost sinks because so often the doctor will say "yes,I treat Lyme" and what he means is "I'll undertreat Lyme and you'll still remain sick and you'll have to keep coming back here for test after test". Then he'll wind up giving you an antidepressant.
Argggh! Time to eat my BBQ Chinese ribs and fergeddaboutit. "It" being the insanity of it.
I have also heard of so called LLMD being kind of nutso with these wacky alternative treatments so if anything sounds too out there and you aren't sure you can always ask.
My Lyme aware retina specialist was the one who told me about this nut. He wanted to give an IV of some funky substance (I can't remember what) to his patients.
The majority of LLMD from what I have heard are fine though.
My Lyme aware retina specialist was the one who told me about this nut. He wanted to give an IV of some funky substance (I can't remember what) to his patients.
The majority of LLMD from what I have heard are fine though.
To borrow mojo's word:
Some 'nutso' treatments:
IV hydrogen peroxide infusions or drinking it.
Injected embryonic stem cells
Color therapy
Coffee enemas (repeated many times)
Rife
Autonomic Response Therapy (ART)
Injected or infused Bismuth (someone died and the 'llmd' was jailed)
Salt and Vit C
Bioresonance therapy
Urine therapy
The Sputnik
on and on and on. Just like 'shrooms. When one is gone another pops up, just ahead of the Federales or a serious problem with it or a death.
My llmd, a REAL llmd, never once even hinted at anything except EBM. Some I didn't like (like taking Provigil) but my llmd was o.k. with that.
Some 'nutso' treatments:
IV hydrogen peroxide infusions or drinking it.
Injected embryonic stem cells
Color therapy
Coffee enemas (repeated many times)
Rife
Autonomic Response Therapy (ART)
Injected or infused Bismuth (someone died and the 'llmd' was jailed)
Salt and Vit C
Bioresonance therapy
Urine therapy
The Sputnik
on and on and on. Just like 'shrooms. When one is gone another pops up, just ahead of the Federales or a serious problem with it or a death.
My llmd, a REAL llmd, never once even hinted at anything except EBM. Some I didn't like (like taking Provigil) but my llmd was o.k. with that.
Thank you so much. Well... The Id doctor was horrible... He basically walked in and said I know you have positive bloodwork results but if rmsf was your problem, a week of antibotics would knock it out by now... Which from everyone I've talked to, it seems to be long term treatment.... Not cured in a freaking week !! So he basically was just like ill test you for other things.... I just don't get how I can have positive bloodwork and present 99% of the symptoms and him completely ignore it! Now I have no idea what to do. I contacted ilads... However there are only 2 names she can give me. The first one STARTS at 500 bucks a visit. I'm only 24 and out of work over this illness so I have nowhere close to that available. The second one has a lot of court cases against him and his practice ad that makes me nervous. I have no idea what to do at this point but just let myself either away. I feel so defeated. All I know to do is pray for a miracle.
Sorry I didn't mean to post that again about the Is doctor. My phone wouldn't show me the comments so I thought the first one never posted
The One doctor that I mentioned with the court cases are from a client almost dying over the Iv peroxide treatments... Scary
To those who say they have a reliable llmd.... Is he ANYWHERE close to Georgia by chance ??
I know from talking with ILADS that the closest LLMD to Georgia is either mine in Fl or several in Northern Va.
Mine in Fl is actually inexpensive and takes insurance, you have to pay first but get reimbursed. She charges $250 for a 4 hour first visit and only $155 for every other visit 1.5-2 hours. Well worth it since I old not walk before and can now after treatment.
Never do IV peroxide treatments. Those doctors are wacked out. Some people may say they are LLMD but do those wacky treatments.
Since you are under 25 you qualify for financial assistance. Contact Lyme Tap and Lyme light foundation.
I am from Northern Va and the LLMD up there had patients drive to her from Georgia and North Carolina. I am moving back to middle Va for a year and that is why I talked to ILADS recently. I will have to drive to a northern Va since there are no other LLMD closer to where I will be.
Please don't wait. If you do you can become very ill like me and I am sure others that are on this forum. Sometimes you can find an alternative therapy or integrated medicine doctor that will give you long term antibiotic therapy.
You need longer than a month, I have been on it for 18 months so far. I have 2 co- infections and they just add to the problems they require a different medication then Lyme. Now the news is 80% of Lyme patients have 1 or more co-infections.
There is a famous LLMD Dr S who believes that Lyme is the co-infection of these other illnesses.
Hang in there and don't give up!
Mine in Fl is actually inexpensive and takes insurance, you have to pay first but get reimbursed. She charges $250 for a 4 hour first visit and only $155 for every other visit 1.5-2 hours. Well worth it since I old not walk before and can now after treatment.
Never do IV peroxide treatments. Those doctors are wacked out. Some people may say they are LLMD but do those wacky treatments.
Since you are under 25 you qualify for financial assistance. Contact Lyme Tap and Lyme light foundation.
I am from Northern Va and the LLMD up there had patients drive to her from Georgia and North Carolina. I am moving back to middle Va for a year and that is why I talked to ILADS recently. I will have to drive to a northern Va since there are no other LLMD closer to where I will be.
Please don't wait. If you do you can become very ill like me and I am sure others that are on this forum. Sometimes you can find an alternative therapy or integrated medicine doctor that will give you long term antibiotic therapy.
You need longer than a month, I have been on it for 18 months so far. I have 2 co- infections and they just add to the problems they require a different medication then Lyme. Now the news is 80% of Lyme patients have 1 or more co-infections.
There is a famous LLMD Dr S who believes that Lyme is the co-infection of these other illnesses.
Hang in there and don't give up!
I hope someone can PM you with the name of a good llmd near you. It's tough being in your position when all the good llmds have to be afraid to have their name being mentioned for fear of 'investigation' by medical boards.
Doctors that have a lot of court cases against them could either be ones wrongly investigated by medical boards or they really deserved it. Hard to tell.
I probably would stay away from one who 'advertises' with a lurid web site.
The good ones don't have to do that.
Doctors that have a lot of court cases against them could either be ones wrongly investigated by medical boards or they really deserved it. Hard to tell.
I probably would stay away from one who 'advertises' with a lurid web site.
The good ones don't have to do that.
Do you mind giving me the name of the doctor on Florida that you mentioned ? Also, ilads did give me a name of someone in North Carolina but that was the guy who has cases for peroxide Iv
ILADS must not have read this:
http://www.casewatch.org/board/med/pittman/charges.pdf
Which is why I would always hesitate to give a blanket stamp of approval of any doctor who is JUST a member ILADS.
I've written about ILADS membership (what it entails and what it doesn't entail).
We still need to get more information about a doctor. And personal recommendations have to examined carefully also. A doctor featured on Under Our Skin and who is an ILADS member would not be a doctor I would go to---- too many protocols that are listed in this thread:
http://www.medhelp.org/posts/Lyme-Disease/Most-dubious-questionable-Lyme-disease-treatments/show/1958902
Who to believe? Beats the heck out of me! :)
But always be aware that a doctor who is investigated by a Medical Board or brought to the courts MAY have just been treating Lyme contrary to IDSAs guidelines. So a 'careful' examination is needed.
Who to believe? Someone who takes the time to investigate.
http://www.casewatch.org/board/med/pittman/charges.pdf
Which is why I would always hesitate to give a blanket stamp of approval of any doctor who is JUST a member ILADS.
I've written about ILADS membership (what it entails and what it doesn't entail).
We still need to get more information about a doctor. And personal recommendations have to examined carefully also. A doctor featured on Under Our Skin and who is an ILADS member would not be a doctor I would go to---- too many protocols that are listed in this thread:
http://www.medhelp.org/posts/Lyme-Disease/Most-dubious-questionable-Lyme-disease-treatments/show/1958902
Who to believe? Beats the heck out of me! :)
But always be aware that a doctor who is investigated by a Medical Board or brought to the courts MAY have just been treating Lyme contrary to IDSAs guidelines. So a 'careful' examination is needed.
Who to believe? Someone who takes the time to investigate.
Thanks guys. I also have a question .... I sleep about 10 hours a night. Wake up feeling like I haven't slept at all. God forbid I try to get out and do anything ( dr appts, etc...) because I barely have the strength to get up ad make myself something to eat or go to the restroom... So my question is.. Even though I'm getting an adequate amount of sleep... Is it better for me to let myself basically rest and sleep all day everyday ( even when I don't I can't really get off the couch) or should I try to get up and about and push myself ? Also, I think I read somewhere there are some vitamins or something that will help with the severe exhaustion ? Anyone know? Also to mojo - I don't think I got it if you sent me a pm !!
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