Lyme or Rocky Mountain Spotted Fever??

[Zizle]

My husband developed what we thought was Rocky Mountain Spotted Fever (rickettsial bacteria carried by dog ticks)in early June and was very sick for 3 weeks. He was a textbook case...fever, then a spotted rash that started on extremities and went all over including palms and soles of feet, muscle pain, joint pain, headache, loss of appetite, swelling of hands, feet, face, symptoms of meningitis. We are in Northern VA but had visited upstate NY and gone fishing in the Catskills a week prior to the fever onset. We never found a tick, buy there was a peculiar looking bug bite near his ankle for more than a week.  He had two ER visits, an overnight hospital stay, a spinal tap, etc. and were treated by an excellent ID doc.  The diagnosis however was made on day 3 - the day the rash started, by his internist after our suggesting it was RMSF. They had never seen it in practice, even though it's endemic to the midAtlantic region, but they agreed to treat with Doxycycline ASAP. The fever and rash resolved within a few days, although meningitis symptoms and muscle/joint pains got worse.  Labs showed low platelets, anemia and slightly elevated WBCs in the spinal fluid.  Everything pointed to RMSF.

At week 4, serology testing was done to confrim the diagnosis. He was tested for Rickettsia (RMSF and related illnesses), ehrlichiosis and Lyme Disease.  All tests came back NEGATIVE. The only abnormality was in band 39 on the Lyme test.  I understand you need to have 2 abnormal bands to be Lyme + according to CDC. However, I read that band 39 is THE MOST SPECIFIC for the Lyme bacteria. Doesn't this imply a +Lyme antibody test, despite the CDC definition?  I hear false negatives are common in Lyme. Are they also common in RMSF?  Parhaps we treated so early (Day 3) that the body did not produce detectable antibodies?  The lab which ran the tests was at Mayo Clinic in Rochester, NY.  

Finally, he was on Doxycycline, 100 mg/2/day for 14 days. That is more than enought to knock out rickettsia, but should that be enough to knock out an early case of Lyme Disease???

[patsy10]

Welcome to MedHelp.  Your husband's illness sounds like a  textbook  case of RMSF from what I have read.  However, it is also possible that he could have contracted other tick-borne infections from that bite or even another bite that was not seen.   Like Jackie suggested I would make an appt. with a lyme specialist as soon as possible.  Also the antibiotic treatment could have affected the results of the lyme test.  It takes several weeks for the body to form antibodies to lyme and with early treatment sometimes these antibodies never form.

[JackieCalifornia]

So sorry to hear of this.

I'm no medical person, but it sounds like you are asking good questions and pursuing all fronts, which is good.

My best suggestion is to find an MD who specializes in Lyme from the point of view of the International Lyme and Associated Diseases Society (ILADS).  They are at ilads [dot] org and you can perhaps find a list of 'Lyme Literate MDs' [LLMDs] there.

Mainstream medicine is woefully ignorant of Lyme and its coinfections (including babesia, bartonella and others in addition to ehrlichiosis) which are carried by the same ticks.  The earlier you catch a diagnosis and begin appropriate treatment, the better -- once the disease gets entrenched, it is difficult to dislodge.

Two weeks of doxy is CDC standard, I believe, but ILADS is more aggressive.  There are other antibiotics which can be used, and they vary depending on coinfections.  

There is a lab in California called Igenex, which the mainstream docs don't like for reasons not clear to me.  Igenex reports on more 'bands' than the other labs, to give more data to the MD to aid in diagnosis.  I have never seen Igenex's reputation dissed for any reason other than that the mainstream docs/CDC don't like their approach.  An LLMD would most likely want Igenex labs run.

It is telling that your husband was treated by an ID, but that the dr had never seen a case of RMSF.  ID docs are woefully isolated from awareness of the Lyme epidemic exploding around them -- even the CDC says Lyme is the fastest growing vector-borne disease in the US -- yet all you hear about on the news is West Nile outbreaks.  So you will have to continue to be persistent and aggressive in pursuing appropriate diagnosis and treatment.

The tests are btw not definitive:  Lyme bacteria are slippery critters and diagnosis is supposed to be based on a CLINICAL [symptomatic] diagnosis, aided by lab tests, but modern MDs rely very heavily on tests, sometimes inappropriately imho.

The sweats, fatigue, muscle pain and anemia make me wonder about babesia.  I had it and it's no fun.  It does not respond to the usual antibiotics, but there is effective treatment with Mepron/atovaquone usually combined with azithromycin.  BUT remember!  I'm not a doctor or medical person.  

**Time is of the essence in treatment**:  look on the ILADS website for a referral, and if you don't find one there, post back and we'll see what we can find.  Also google 'how to find an LLMD'.  It's not a diploma or qualification, it's belief in Lyme and its coinfections as more than mainstream medicine deems it to be.  Quality of LLMDs is variable, so sometimes you have to keep hunting if you don't get the right feeling.  But you gotta start somewhere.  Many of us here did not get early diagnosis and so continue to struggle with the effects.  

Keep us posted; your husband is fortunate to have you working on his behalf.  Best wishes --

[Zizle]

I just read about Herx reactions and it occurs to me that it explains his changing and worsening symtoms after he started Doxycycline. His headaches were so severe we thought they might be caused by the Doxy (intracranial hypertension side effect). He had a blood patch procedure to cure the CSF leak from the spinal tap, which fixed his severe postural headache, but the headaches changed after that. He also had sweats but no fever, nagging mucle pains, extreme fatigue that lingers today, etc.  Would RMSF cause a herx reaction as well as Lyme? He was asked to take Doxy for 20 days but they agreed to stop at 14 becuase of the headaches and they did improve. Does he need more Doxy to make sure he is cured????????