Lyme Disease and Rocky Mountain Spotted Fever

[KnKShowmom]

Well, this week is starting off great -

Haven’t been feeling too great for a while and finally got around to going to the doctor a couple weeks ago. Hadn’t heard anything so called this morning and the nurse tells me I have tested positive for both Lyme and RMSF! Wonderful…

They are called in a Rx and I am supposed to stay out of the sun for 21 days while I am on it - how the heck do you do that and run a farm???

I am waiting for the doctor to call me back but any thoughts or experiences would be helpful right now because this was not how I expected to start my week. :no:

[draftdriver]

I don’t think they mean that you are to hide indoors like a vampire LOL. Just stay reasonably covered. Some medications can make you prone to sunburn.

[charismaryllis]

long sleeves, hat, and buckets of spf 45. hope you feel better!

[KnKShowmom]

Sorry - not making myself very clear - needed to think before typing. LOL, been thinking it was just a premature senior thing but evidently not…

The sun thing isn’t that big of a deal, just inconvenient this time of the year when I am outside all day all weekend long…

More interested in hearing about how well you tolerated the meds, how long until you felt better, etc.

I am pretty sure I have had Lyme for a while but the RMSF diagnosis threw me a bit. Strangely enough, this was one of the best years in terms of ticks/bites that we have had in a while but we have had a huge flock of turkeys on our farm and have to wonder if they have helped to keep the ticks down.

[ideayoda]

The reason for less sun exposure is that you will basically almost turn purple w/o sunblock (had LD for almost two years before diagnose and then 6 months on antibiotics). Wear the highest sunblock and cover up (easier in the winter). The difference in the first 75% of recovery happens within weeks imho. The ticks which cause LD are the size of (.) that period, very hard to detect.

[Calamber]

I also have Lyme and saying “you tested positive” for Lyme is very indefinite. You could have chronic Lyme and there are Lyme specialists who can tell you what the markers are that indicate that. Find a doctor who is a member of ILADS, (International Lyme and Associated Diseases Specialist). Most doctors’ do not have a clue how to treat.

[KnKShowmom]

Thank you Calamber - that is good info as I get the feeling my doctor doesn’t know much about Lyme. Our old doctor retired and she is pretty young and new to this area so maybe just not much experience but I am not up for being a teaching tool at this point.

Given that I have had some of my symptoms for over a year but none of them were screaming to get tested for Lyme’s I really do need someone to help me know where to go from here.

Also, from my research yesterday, I think the RMSF test result must be a false positive because I haven’t had a tick bite since at least mid summer and have none of the symptoms. Regardless, they are treated the same so it really doesn’t matter at this point I guess.

[grayarabpony]

Could be, but a percentage of people with tick borne diseases never pull off a tick. They get bitten and infected and tick drops off without them ever seeing it. Plus, symptoms for RMSF are pretty variable.

[KSAQHA]

I was diagnosed with Lyme a few months ago. Pulled off a tiny deer tick, developed a bullseye rash within 24 houra, immediately went to the doctor, and put on a 21-day round of doxycycline. I didn’t stop riding or going out in the sun…it was summer! Just slathered on sunscreen, wore a hat/helmet and gloves. No problems with burning.

[charismaryllis]

@KnKShowmom;7257408

Thank you Calamber - that is good info as I get the feeling my doctor doesn’t know much about Lyme. Our old doctor retired and she is pretty young and new to this area so maybe just not much experience but I am not up for being a teaching tool at this point.

where are you in virginia? the montana ex-pat in the next office went to these folks:

Drs Michael and Kerri Gray

in bethesda, MD, when she came down with what she thought was RMSF and turned out to be lyme, after she went to a couple other docs who said “oh it’s the flu.” :rolleyes:

[KnKShowmom]

I am outside of Lynchburg - trying to find a directory of doctors here but its not as easy as I would have thought. I could also go to Charlottesville but would prefer to stay local if I can.

I am trying to think if I know anyone else who has had it around here so I can get a more personal referral but coming up empty at the moment.

Strangely enough, Lyme was one of the first things my doctor wanted to test for when I went in, but just not sure she is on top of all aspects of this disease especially since I suspect I have had it for a while.

[Calamber]

ILADS contact link

Here is how you can search through their database.

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

This is a link to my doctor if you cannot find help. His website alone is enormously helpful and he does give webinars that are free. He will be happy
to help you if he can.

http://www.thehealingartspartnership.net/bio_ross.htm

[rmh_rider]

[QUOTE=KnKShowmom;7256116]
Well, this week is starting off great -

Haven’t been feeling too great for a while and finally got around to going to the doctor a couple weeks ago. Hadn’t heard anything so called this morning and the nurse tells me I have tested positive for both Lyme and RMSF! Wonderful…

They are called in a Rx and I am supposed to stay out of the sun for 21 days while I am on it - how the heck do you do that and run a farm???

I am waiting for the doctor to call me back but any thoughts or experiences would be helpful right now because this was not how I expected to start my week. :no:[/QUOTE]

I am so sorry for you. I got 100 or so of tiny tick bites a couple summers ago, I had to get off the horse and hike about 10 miles after we found some lost kids iin the woods, and I was the only one fit enough to hike out. After the itch (3 - 4 weeks) went away (but not completely - oh lovely), I also started to not feel well. Doctor, blah blah blah, thought I was crazy to have so many tick bites in one area. That area was in between the area at the bottom elastic area of my tights, and my tennis shoe. IOW where ever my socks were showing is where I got 55 on one ankle and 65 on the other, and about 10 on my body. GRR… I hate ticks! I got doxy medium strength. This was in the summer. I just wore tights, and a light cotton long sleeved shirt, and my big straw hat, and sun screen on my neck and face. Easy. It is winter now, so there should not be too much sunlight. You will be just fine with the sun. Most all of your body will be covered, just put a hat on and some sun screen on your face and neck. The meds will make it so you will just sunburn more easily.

Sorry hope you get perfect again.

Bad ticks, I hate ticks. I wear lots of bug spray. BTW the ticks didn’t go in my shoes, previous heavy amounts of bug spray was on my shoes, and yes, on the inside too.

[nccatnip]

Please take their advice and stay out of the sun if at all possible. The medication will create what is called Redman’s Syndrome. In laymens terms, it will leave permanent sunburn areas to parts of skin exposed to the sun for the duration of the antibiotics. How do I know? I still, after 7 years, have a perfect sunburn line on my neck and chest as vivid as if I had laid in the sun for hours.
Hope you get well soon, Lymes is a struggle. I live it

[mtngirl]

RMSF

I was diagnosed last year with RMSF. I had severe iron saturation deficiency as well, but that didn’t explain the low grade fever and body aches I had. My symptoms were really pretty vague. The doctor was adamant that I begin a course of doxycycline ASAP…one problem…I’m allergic to all the tetracyclines. So we treated the symptoms and just kept a careful watch. Seems there’s not an effective alternative for RMSF available in the US.

I never found where I’d been bitten by a tick. No rash, no marks.

BTW…the way I discovered I’m allergic to doxycycline was by spending approx one to one and half hours in the sun one afternoon in January with long sleeves on. I broke out in a severe rash from head to toe which itched horribly and continued to break out for several days despite being treated with antihistamines etc.

[SonnysMom]

Definately go see a Lyme specialist. 21 days for doxy seems really short. That was what I was originally prescribed after I was inpatient for Lyme. The Lyme was back within a couple of months because I was not on it long enough. They never bothered to retest me after 21 day. It was just enough to tamp back the symptoms.
I was able to take the full 21 days of Doxy and was just starting to get the light sensitivity. The next round I started to get skin sensitivity at day 4.
For me if I have any skin exposed to sun, even filtered sun under a tree, my skin feels like I have put Ben Gay on it. That tingling feeling. When I was on it the second round any exposed skin even in an office building would tingle. It was worse if somebody walked by and I got a breeze on the skin. It was like having creepy crawley skin for hours. Oddly enough my face was not effected, just extremities.

My last round of Lyme was treated with amoxicilin 3xs a day and azythromicin once a day for about 9 weeks. My current Lyme doctor prefers to treat for 4-6 weeks after the last symptom is gone. He feels most doctors undertreat and then give up on their patients. He then gets the patients that other doctors have given up on.

[KnKShowmom]

Well, the first dose of doxy didn’t sit in my stomach too nicely but 2nd this morning seems to be doing better - bummer is that I can’t take anything for my stomach with the doxy because it will affect absorption. This might be a long 3+ weeks.

And I do agree that 3 weeks of doxy probably isn’t going to be enough but its a start and will buy me some time to figure out if I am going to need to see another doctor.

I contacted both the ILADS and the Tick-Borne Disease Alliance and they don’t have any doctors listed in my area (or within 100 miles) so I just might need to keep doing my own research and encourage my doctor to get up to speed asap - it won’t be the first time I had to do that and it probably won’t be the last.

I appreciate all of your responses - I now know that Lyme can manifest itself in many strange ways but hearing your experiences may spark a thought that could be more helpful than you know. After looking at Calamber’s doctor’s website, I am more convinced than ever that I have had Lyme for longer than I care to think about - I just never had the classic, gotoyourdoctorquick symptoms.

I used to joke at the end of each summer that I should make getting tested for Lyme part of my yearly physical but after seeing the bill from the lab, I.don’t.think.so!!! :eek:

Thank you again for all of your replies - I truly appreciate it!

[Calamber]

I never had the classic symptoms either, never a rash but was outdoors a lot when in Virginia and bitten many times by ticks. I never got really sick until I became toxic with mold poisoning on top of previously undiscovered mercury and lead. One year of chelation later, and I deal with the chronic lyme with various supplements that assist with the regular detoxification of mold doses common to the PNW.

Note the use of low doses of Lithium to control brain dysfunction. It concerns a certain symptom which reveals itself as excitation or so called brightness. My sister has chronic Lyme also and this is one of her problems.

[CoolMeadows]

KnK - There is a Dr. Harbor in Lexington, VA who knows Lyme. You’ve found there are no recommended doctors in the area because the major healthcare systems here have taken the stance that Lyme basically doesn’t exist in this part of Virginia. I am looking for a dr willing to test me for co-infections because I’ve had STARI twice in the past two years and just tested positive for the tick induced alpha gal meat allergy. My dog has had Lyme and ehrlichiosis, but it’s easier to get treatment for pets. The ticks here are FILTHY, but the care and willingness to test for tickborne disease is a little behind. It’s good that your doctor was at least willing to run the tests. Please ask your doctor to make sure your case is reported since they are rarely reported in this area as doctors will say it’s a specialist’s job, specialists say it’s the lab’s job, and labs say it’s the PCP’s job to report.

There are a couple other doctors mentioned in these articles http://www.mdjunction.com/forums/lyme-disease-support-forums/lyme-disease-activism/2223504-roanoake-va-positive-3-parts-ld-political-divide but I’ve only heard good things about Dr. Harbor.

Good luck and definitely stay out of the sun.

[Calamber]

CM, she only was saying that there were no ILADS doctors in the area. My doctor does not take any health insurance at all. It allows him more freedom to treat. I pay for it out of pocket but probably saved money since we have a very high deductible to make it affordable at all for us. What I do have is a Health Savings Plan and that has paid for almost all of the supplements.