Rocky Mountain spotted fever. Diagnosed this week

[Amayo89]

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 ?

[JackieCalifornia]

I hear you.  Another point to note however is that Lyme bacteria not only travel with other infections, but also have exceptionally slow reproductive cycles compared to most other bacteria.  That means that a couple weeks of antibiotics that works great on an earache won't likely make a dent in a Lyme infection, because it is when dividing (to reproduce and make baby Lyme bacteria) that bacteria in general are most susceptible to antibiotics -- the cell wall of the bacteria are disrupted, and the antibiotics have a window of opportunity to kill the exposed bacteria.

Docs who don't understand Lyme assume that its characteristics such as reproductive cycle timing are the same as other bacteria, but from what I read, that's just not so.  

Additionally, the Lyme bacteria can and do create biofilms in the body -- slimy shields that cloak the bacteria from the immune system, and thus another way that Lyme don't play nice like other bacteria.
... and also to HD Springer above:

Lyme specialists treat for months, not weeks, using antibiotics that pierce the biofilms and kill the bacteria hiding within.  Docs such as infectious disease (ID) specialists do not credit or believe that, which is why seeing an ID doc may not be working for you.  They simply believe differently.

In your situation, I would find a Lyme specialist, not an ID doc or an rheumatologist, who are stuck in the past on how Lyme acts and how to kill it.  It worked for me and another family member, and we are healthy and free of Lyme (and co-infection of babesia) for at least five years now.

Try a new paradigm.  What do you have to lose?

[HDSpringer]

I became sick with RMSF in August 2014.  I also have RA and at least one additional autoimune disorder that they can't decide on.  I thought it was just a bad week, until the high fevers/chills, etc started making me think otherwise.  By the time I went to the GP, 7 days had elapsed since onset of symptoms.  4 more days until they told me I came back positive for RMSF.  Titers at that point were over 450 (I think above 40 is positive for RMSF).  30 Days doxycycline.  Went through the sunburn (be careful out in the sun on this.  After the 30 days, I continued with sever joint pain, which now included burning, continued with daily headaches, the so called fog, yea it's real.  I was told it wasn't RMSF, but because I had RMSF, my RA has kicked into overdrive, and has not stopped yet.  My feet have been so bad, I can hardly walk.  Finally went to the foot Dr.  My feet are under attack he told me.  Stated he has seen this with his daughter who has limes, and same issues with the joints, and the feet.  Suggested I go back to my Infectious Disease Dr. and re-look at RMSF.  Going on 7 months post RMSF, and feel awfull.  Have only been treating the RA.  I have been finding it hard to get another appointment with Infectious Disease Dr.  They want transcripts, labs, etc.  Stated they would review it and get back to me if they felt I needed another apointment.  I was told this by Johns Hopkins, who would have been new to me, and then by Penn Medicine at Univeristy of Penn, by the Dr. that I had previously seen.  Very frustrating.

[PamDmz]

Hi there. This thread is almost a year old now, but I wanted to join. I believe I have lyme or some other infectious disease and need a doctor in VA who will do thorough testing. If anyone is still reading this, please help!

To Mayobarber:

This is what makes sense to me... Ive read up on all auto-immune diseases like lupus, MS and fibromyalgia. Many doctors and scientists believe they are caused by viruses or uncured infectious diseases. That would make sense why symtoms over lap and blur between them all, and that most people are diagnosed with a miriad of these "auto-immune" illnesses many more rare ones given names too that I haven't bothered mentioning. I believe the name on it doesn't matter, but it makes complete sense that the cause is contracted and untreated virus (parvo, mono etc.) or bacteria (like tick born ones or west nile etc.) that CAUSE all these symptoms! Doctos say if you just had rmsf or lyme that antibiotic should have cured you. Well maybe, just maybe if it was caught early. But bacteria prolifferates over time, and those of us that contracted whatever it is (or whatever they are since many come in one insect bite), we have such an overloaded system of this stuff that we need to be treated differently. We need our immune systems to be helped just like HIV/AIDS patients. And we need lots of good bacteria/ pro-biotics to balance us out and so so much more... only a good doctor can get the amounts and various treatments we need right. I've read that these bacteria change form/ morphe into undetectable types etc. and that's probably when they start affecting our organs and nervous systems and we come up looking more like an auto-immune labeled patient, because these tricky little monsters have in some cases tired our immune systems into thinking they are the norm and not to fight back any longer:(

[Mayobarber]

Thanks ! It was definetly mojogal !

[JackieCalifornia]

Try posting a whole new thread titled "Need LLMD around Sarasota FL" and it will catch people's attention.

I just searched the archives here, and it may be Mojogal who knows a good LLMD in Sarasota -- you might try PMing her as well.  I searched for 'sarasota' but didn't get anything.

You can also search for your old screen name in the skinny 'search this community box' in the right hand column near the top of this page and see what pops up.

[Mayobarber]

Please help me find a llmd - I have contacted ilads and thru gave me a doctor in Tampa but I someone on this thread previously gave me the name of one in Sarasota that I really wanted to visit. That was when I was on a different username that I can't seem to get back in to for some reason so I can access my messages to see. All I remember is Sarasota and female doctor. If anyone else knows of ones semi close to Georgia please let me know as well I am desperate. The doctors are to the point now they think I hve depression and don't believe any of my side effects :((

[JackieCalifornia]

Does your company have the possibility of a medical leave of absence?  I think each state has different laws and rules about these things, but you might look on the web for your state's website that would have information about those things.  

Serious illness can be classified as a disability, and there may be laws in your state (or at the federal level) that keep employers from terminating an employee who has a serious medical condition.  

I just searched online for -- california disability rights -- and got two kinds of hits:  one type are law firms offering to sue the employer, and the other type are links to California state agencies that deal with disability.  

Check this out soon, tho, because if you want too long under the law, you can't pursue your rights for wrongful dismissal.  At the same time, I'd be looking into state disability assistance to see if you qualify.  Ask a friend to help you if you are not up to it.

Best wishes --  

[mojogal]

So sorry, that happened to me way back when. Try to get SSDI or SSI.

[cave76]

DRAT! I'm so sorry----- just didn't need that TOO.

[Mayobarber]

Well- another blow has occurred and now I've lost my job over the absence this illness has caused... Which means I lose my insurance

[JackieCalifornia]

Your insurance company will probably reimburse you for a portion of what the out-of-network doc costs -- call the ins. co. and ask.

Also ask the Lyme doc's office if there is a reduced rate for those who can't afford, or if they take payment over time.

And then there's family ... that's what they are there for, tho it's hard to ask, I know.  Failing family, then friends.

Never hurts to ask.  

[mojogal]

There is a law firm that always advertises on TV, that helped other people with tickborn illnesses get assistance. In the worst case you would qualify for Medicaid and other assistance. I started out with that and then went to disability.

If you are interested PM me and I will give you their name. You don't pay them. If they get it for you, you pay them a percentage of your first check.

Best of luck.

[Mayobarber]

That's what I'm saying - my blood work came back positive for rmsf so I definitely have it. My doctor sent me to An infectious disease specialist because I am having such severe symptoms and e took one look at me . Said well your bloodwork is positive but the antibiotics would have cleared it in a few days so you had another issue. I'm still waiting on bloodwork to come backup indeed find out if it is anything else but I've been so 8 other doctors, had massive testing and bloodwork done. Plus I have every symptoms of rmsf and positive bw so I don't see how it could be anything else. It is all of the doctors who do not believe it is a long term illness though, not the ss people. From what I've researched ( and my experiences with these 8 other drs) the only ones that believe that it can be log term are actual llmd and since they are so expensive I haven't been able to make it to that step

[JackieCalifornia]

Are your docs SURE you have RMSF?  Maybe it is something else.  Ask for a reconsideration from the doc on what the diagnosis is ... that you are hearing from the disability people that they don't 'believe' in RMSF that lasts so long.

The doc will get the point, or should -- because the doc knows you're not making this stuff up.  If the doc won't reconsider, then find another doc for the appropriate diagnosis.  Docs can make mistakes.  I had a bunch of them do just that.

[Mayobarber]

Yeah see. I just looked at the website. It says you must be out of work or expected for me out for 12 months or more... It's only been 2 months for me and I'm sure with doctors that don't believe in long term rmsf they wouldn't tell them they expect it to last 12 monts either. Ugh. Not to be a downer but I'm in danger of losing everything... How am I supposed to afford treat myself? It's really depressing

[Mayobarber]

Oh no I definetly am taking it and have been for over 2 weeks now. I haven't been able to get out of bed otherwise ( and sometimes still can't) so no question there. About the ssdi I thought about it but noticed it says I will need all medical records. I figured they might give me a hard time since of course the doctors don't relieve rmsf can be long term. I mean I literally had a doctor tell me yes your bloodworm is positive but a couple days of antibiotics should have kicked it so no you don't have it.. What the hell ??

[JackieCalifornia]

I would also skirt around the doc with legal problems.  The doc may be okay, but you have no obligation to be a test case.  When in doubt, keep moving.

RMSF and the other infections also in the rickettsial family are sometimes hard for docs to peg as to which is which.  Some of the infections are more serious than others.  I got one of the 'other' rickettsial infections (anaplasmosis) not too long after my Lyme treatment was finished -- I was sitting on a towel in a park, and a big ole dog tick (not a tiny Lyme-style tick) buried itself in the back of my thigh where I didn't see it for days.  It was only after I got a rash and knew I was sick with *something* that I found the tick and went to the doc.  

Doc prescribed doxy, but I confess I didn't take it .... I was very run down and had had a reaction some earlier meds, and just didn't feel like risking getting worse again ... which is totally the opposite of how I normally am.  Luckily, I had one of the less serious rickettsial infections, and from my reading, it's one that the immune system can kick by itself.  By the time the tests came back, I was feeling better, so ... I didn't ever take the doxy.  That was several years ago now, and no problems.  (And I stay on the sidewalk in the park now.)

In your situation, tho, without a *very* compelling reason NOT to take treatment, I would take it.  And if you want to NOT take it, have the conversation with your doc about the pros and cons.  I think I was lucky ... and no sense pressing your own luck. If it happened to me again, I would talk it through with my doc and probably take the meds.

Keep us posted -- best wishes --

[mojogal]

I became unable to work and got SSDI. Any thoughts of getting that? You also will get Medicare.

[cave76]

Yes, I've read that doxy is good also.

[Mayobarber]

Well I wa prescribed doxycycline and read a lot that this is the common treatment for rmsf. I have done lots of research an already contacted ilads for references. For the record I do want to say one of the references they gave me has several pending court cases for almos killing patients so that's lovely... However I have found a llmd and am trying to get funds to see her as I haven't worked in a whole because of this sickenss

[cave76]

Earlier I said that I didn't know anyone who had been diagnosed with RMSF or Rickettsia ----- Just this week, a friend who sees a top tier llmd, was dx'd with it.

The treatment for my friend will be Zithromax and Rifampin. I don't know if this is what every doctor prescribes----- but I trust the doctor that rx'd it.

[cave76]

Here are the two places to go to for a referral:

http://www.ilads.org

http://www.ilads.org/contact/contact_ilads.html

[mojogal]

Jackie is correct but adding to what she said I did and still do get numbness in limbs so I would say that could be a sign.

Lyme also gave me Congestive Heart Failure once. I just had to go on a daily diuretic and it hasn't come back since but yes it could affect your heart.

Good luck to you. Let us know how you do.

[JackieCalifornia]

Welcome to MedHelp Lyme --

Sorry to hear what you are going through.  Lyme can affect the heart in various ways, so it's possible.  I don't know if you've read yet that there is a split in the medical community about how to diagnose and treat Lyme, but that may be part of the confusion you are encountering.  It's not you:  it's the medical community.  

Infectious disease MDs ['ID doc' is easier to type, so you'll see that reference used when it means an infectious disease doc] as a group acknowledge the existence of Lyme, but hold tightly to the idea that it is rare and can be cured at any stage with a few weeks of doxycycline.

The counter position to that is held by other docs who can be general practitioners (GPs) or internists or any specialty, but are different in that they take a broader view of Lyme as a tricky infection that the ID docs are underestimating.  You'll see the term LLMD used to refer to these broadminded docs -- it is not a title or degree, just patient slang to refer to a doc who knows that there is much the ID docs are overlooking.

If you have not located an LLMD yet, it is something I would consider in your situation.  I personally went through 20 MDs before one of them ran a Lyme test on me.  The test came back positive, but that doc said I could not possibly have Lyme ... but I had a friend some years ago who had Lyme and knew I should get it checked out.  I did have Lyme and another disease the same ticks often carry.  

That may be the same situation you find yourself in right now, and the best advice I could suggest is to find an LLMD for a second opinion.  You don't say in your profile what state or area you are in, and in some states, the medical board is really hard on docs who lean toward the LLMD way of viewing Lyme (like Texas, for example).  But it just means you have to be nimble.

The main voluntary group for Lyme docs is ILADS, the International Lyme and Associated Diseases Society.  Check out their website for more information at ILADS  [dot]  org, and if you would like a referral from them, email them at     ---         contact   [at]    ILADS   [dot]    org and tell them your location (state and nearest big city) and how far you can travel. They can send you the names of ILADS members.  Even then tho you'll need to keep your wits about you, because as someone just posted above, some supposed Lyme docs are wacky.  It's a fast-developing area of medicine, so at least some of the docs are bound to be oddballs.  

Lyme can affect the heart, from what I read, and yet nonLLMDs too often to do not put Lyme into their differential diagnosis.  At the ILADS website, search for Burrascano's Treatment Guidelines.  Dr B is a well known LLMD and his guidelines are getting kind of long and wordy as they are added to over time, so don't get bogged down ... just know that if you want to look up Lyme in relation to heart issues, that is a search you could try there.  

I too would be concerned in your situation, and I did what you are doing:  continuing to pursue additional advice.  No one here that I know of is medically trained, so we've learned what we know from having Lyme ourselves and figuring out how to get diagnosed and treated.  We're happy to share with you if you have any questions, but bear in mind that it's a complex disease still being figured out by the medical community ... or at least, by some of it.  

Let us know how we can help.  Best wishes to you -- stay in touch.