'A Patient Voice' Community

Welcome Bunno23 and thanks for posting.

I am so sorry to hear about your husband's struggle with RMSF and the delay in his diagnosis. Your doctor sounds like a gem and I only wish all doctors were so passionate about helping their patients.

I found this article on the Spread of RMSF . In it, they mention an expert who has dedicated almost 30 years to studying the disease. Perhaps your doctor could contact him? Or if this researcher doesn't have the answers, he could refer your doctor to one who could?

Keep us updated on how your husband is doing,

Byroney

I went undiagnosed for NINE YEARS! But I am still alive (Thank God). I definitely do have some serious symptoms, but I also have Lyme Disease and Babesia. (Did I mention how happy I am to be alive?) I can walk, talk and use my mind, but I suffer a lot from chronic fatigue and food sensitivities. I just started treatment, so I cannot comment on whether or not chronic RMSF exists in the same way that chroinc Lyme seems to, but I can offer hope in that I've had it for so much longer than your husband and I can still walk, talk and breathe:) You may want to consider locating a Lyme literate doctor (LLMD) in the hopes that he/she will be better versed in this area. Obviously, I have a very low opinion of regular GPs and specialists after my experience (must have seen like 40 docs--ended up diagnosing myself with Lyme--RMSF was a shock though--only my LLMD knew to look for it.)
Also, I think iodine and/or thyroid medication helped to keep me going. I recommend reading Dr. Broda Barnes' book "Hypothyroidism: The Unsuspected Illness." There seems to be a link between hypothyroidism and tick born illnesses--especially chronic ones in my opinion.
Pray. Good luck and God bless!

Thanks Byroney and AN_241733 for you replies. As it turns out, we don't know what is/was actually wrong with my husband. The original Infectious Disease doctor made a clinical diagnosis of RMSF based on IgG and IgM levels from a blood test. Another test was run 30 days into Doxycycline therapy. The test was virtually negative. At that point the doctor said one of the tests was probably wrong and told us there wasn't anything else he could do. He indicated he had only treated RMSF a limited number of times and was stumped. At that point he sort of dropped the case.

We then consulted with the director of Infectious Diseases and also a Neurologist at a local university medical center which is nationally ranked in neurology. Through another blood test which came back negative, the ID doctor determined there never was a case of RMSF. He said that indeed there was no tick borne disease present and the blood tests showed no trace or memory of any such disease. At that point the Neurologist ordered very extensive testing to look for any possible underlying neuromuscular diseases. Testing even included a spinal tap.

Months prior to seeing any of the above doctors, we had gone to a person that calls himself an LLMD. Through a blood test sent to a specialty lab out west, he determined my husband was positive for Lyme based on the "bands" the labs uses as indicators. However, in researching this doctor we discovered he was a former orthopedic surgeon who had recently been denied further licensing in 2 states due to negligence and malpractice as a surgeon. He also had a number of malpractive lawsuits pending against him. The above mentioned doctors were familiar with this man and assured us he was basically a dangerous quack. With that we walked away from him.

Concurrently with all the other issues, my husband was diagnosed with very severe spinal stenosis. It was advised he have surgery to free up the nerves in his spine. He had surgery October 6th and really there is not much difference thus far. He is in physical therapy which has helped with muscle strength but there is no change with gait, balance or the degree of peripheral neuropathy. The doctors tell us that IF there is any improvement in the nerves, it could take up to a year or so to see it happen.

We are still quite sure he had some sort of tick borne or parasitic ailment. But his back condition was so severe that it's hard to tell what degree of the problems were do to that and what else may be lurking. He'll finish another month or so of PT and then we'll determine what to do next.

It is interesting you (AN_241733) mention hypothyroidism. My husband has gained weight as if his metabolism has greatly slowed down. Initially we thought it was because he isn't as active as he was before all these problems. However, it just seems to be more than that. I'm going to do some research and we will keep that in mind as we move forward. It is wonderful to hear you are on the right track to recovery. I pray all goes well and you will heal.

We so appreciate any thoughts and comments. Thanks again.

Bunno23,

Thank you so much for writing back with an update. It sounds like you and your husband have done everything you could think of to try and help him feel better. I hope as he continues with the physical therapy that his gait and nerves will improve.

Since you noted An_241733's mention of thyroid, perhaps your husband should consider consulting with an edocrinologist, if he hasn't already. Maybe one of our other members will have a suggestion for you as well.

Please let us know how you're both doing,

Byroney

Bunno,
What an ordeal you've been through! I want to give you some hope, the human body is miraculous! I work with people with their health with nutrition, even helping people with tick-born illness. Our products do NOT heal or cure, it's your body that's miraculous, it just needs the fuel to repair itself. There is hope here.
Christy

An_241733,
I know its been 9 months since you posted this reply but I would love to find out how you made out. My wife just got her RMSF diagnosis this week. She has been on the meds for 4 days so far. Your update really hit home. My wife was diagnosed with hypo thyroid 3 years ago. Since around that time, she has progressively suffered from severe fatigue (often falling asleep while sitting in a chair). In addition to the fatigue, she also has been dealing with bouts of abdominal pains. The GP has always attributed this pain to muscle cramping. They tested her for Lyme disease two years ago but that came back negative. In addition to fatigue and abdominal pains she also has severe numbness in her left foot.
Since starting the meds, the abdominal cramping has subsided. She sees the infection disease doc this week. I will update her status as she progresses with this disease.
Thanks,Paul

Hi, I too would like to know how An_241733 has done.

Raupa, how is your wife doing? I was diagnosed with RMSF in July and Lyme last November.

Like most of the other stories I've heard, I've been sick with issues that mimic other illnesses for quite some time (2005/2006) - however extensive testing always came back negative.

Last November however, I got really sick with additional symptoms (other than my usual issues) and tested positive for Lyme. I was 'treated' with two weeks of doxy and given a clean bill of health by my PCP and Infectious Disease Doctor, however noone had any answers as to why I was still experiencing the 'old symptoms'. Another long list of dr's visits and diagnostic procedures later - and no answers (neurology testing, cardiology, endocrinology, etc...)

I ended up finding a Lyme Literate Doctor who accepted my insurance and she became my PCP in July. She happened to be running a series of tests on me at my first visit and the RMSF came up positive as well as the Lyme again (so much for treating me back in November). I've been on antibiotics since July.

The question now is whether or not my 'old symptoms' are related to these tick born illnesses or whether it's something else that I'm dealing with...

Very perplexing. Please do tell me about how your wife is doing.

Hi Paul, I hope your wife gets good quality medical care and things get better.

My husbands situation still remains a mystery. It is a very long story but in short he was UN- diagnosed with RMSF by yet another Infectious disease doctor.

A convalescent blood test was run after a month on Doxycycline. It indicated there was no sign of RMSF, meaning no memory of it in his body. When asked how that could be, the doctor simply said there must have been a mistake at the lab. He then no longer would take our calls and basically dismissed us. We had told him we were seeking a second opinion from the head doctor of the Infectious Disease Center at a teaching university in Chicago. At that he was no longer willing to deal with us.

The new doctor ran tests and confirmed there was no sign of RMSF. An enormous amount of tests have been run in the past year with no answer. Even a Lumbar Puncture showed nothing.

The good news is though there is no improvement in the neuropathy, a recent follow up EMG indicated nothing has worsened.

It is our strong feeling that the problem stems from some sort of parasitic invasion. However, I doubt we will ever know. There appears to be little known about the many, many types of parasitic diseases that may exist.

The only thing I can advise is don't give up and keep looking for answers. Good Luck to both you and your wife.

In April of 2011 on a turkey hunt in the Midwest, I had several tick bites, one imbedded in my navel. I got them all off soon enough, like dozens of ticks I've found on me before, but my navel began draining like an infection was brewing. A doctor friend I was visiting a few days after that navel invader was found gave me some antibiotics they had on hand. I don't recall what the antibiotic was but after a week, things seemed to clear up. Slowly, over the following 12 months, I became more and more fatigued and was losing my concentration. I experienced a lot of those episodes where you walk into a room to get something, but forget why you went into the room. Several times, I'd be driving down the road, forgetting where I was going. My wife suggested I see a doctor to get checked for Lyme disease. The report came back negative for Lyme, but positive for RMSF. Three weeks on doxycycline seemed to eradicate the RMSF but I'm still dealing with low energy levels which is strange for a high energy person like me. It's led to bouts of depression as I just can't seem to get my 'spark' back. I'm waiting for a referral to an infectious disease specialist in our area to try to get to the bottom of this. I can't stress enough the importance of early detection, as, perhaps, my delaying testing for RMSF may have been the root cause of these lingering symptoms. If the specialist comes back with the same diagnosis as your husband, that there never was RMFS present, then I guess I'll have to plot a similar plan as you have experienced. We'll see over the next few weeks. In the meantime, I've pushed myself to exercise more frequently, got on a nutrition plan which has me dropping excess weight and added large doses of vitamin D and B12 to my standard fish oil, magnesium and multivitamin supplements. Too early to tell if I've turned the corner yet, but I think it's a step in the right direction. Good luck in you and your husband's search for an answer. I'll let you know what I learn as I find out.

Hi Tsmax, I was diagnosed with RMSF in July 2012. I have no recollection of a tick bite, but had severe muscle pain which migrated throughout my body and also migraines and light sensitivity. I took Doxycycline for 14 days. Started to feel a lot better, but then in the beginning of Sept. I developed severe backpain, fatigue, and headaches. I had an ultrasound, lumbar xray, and contrast CT scan and they all came back normal. I'm not sure if this has to do with the RMSF or not. I was sick for about 2 months before getting diagnosed in July. It is very frustrating and there is a severe lack of infectious disease doctors in my area. Do you think we will ever be "back to normal" again? I haven't tried any supplements, but maybe I will try some Vitamin D or B12 and see what happens. Good luck to you!
-Laura

laura
in the same boat i think. my husband has been dealing with something for 3 years now with no test. now yesterday he has tested to rmsf. with alot of the symptoms and more. the main thing is his joint pain, brain fog, and drops his forks, spoons ect. cant hold on tho things. whats next?

I am just now coming into this thread. I have read all the posts with interest. I was bitten by many ticks in August of 2010. I began to have serious muscle cramps in April of 2011. After several trips to my family proactitioner he finally ran the RMSF test (I'm a cash patient, the test is expensive, he is mindful of my budget, so I think he wanted to rule out some other stuff). Sure enough, the test came back hot. He immediately presecibed the Diox for three weeks. It seemed to knock it out, but the effects have lingered for two years now. I did go through a horrible period of mental confusion and depression. Arthritis set in, and the weight gain came on with a vengence. Tired all the time, especially in the afternoons.

I'm self employed in the construction trades, so I can on occasion come home and rest in the afternoon if I need to, but not often. Some days I feel that I am getting better, especially as to the arthritis and such.

I've added a healthy dose of greens to my daily diet and I'm about to make some other changes in that regard. I'm trying to exercise more, but I'm just feeling so awful some days I just can't do it. Still, the greens have seemed to help, and I'm getting in bed by 8 pm so that I get a full night's sleep plus some... that seems to help as well.

Glad to find this group. If any of you have any other suggestions as to good web sites for this disease I'd be grateful. Bruce

Hi Bruce, Sorry to hear you too are suffering from this strange problem.
Doctors never have figured out what was really wrong with my husband. As I mentioned in previous strings, he was diagnosed once with Lyme Disease and then later with RMSF. In both cases he was UN- diagnosed at the University level by an Infectious Disease specialist.
We are positive his problems are the result of some sort of parasite - however the medical world still doesn't really know a lot about testing or the many types of parasitic disease.
My husband's problems also startedin 2010. The good news is that the damage does not seem to be progressing. He has severe polyneuropathy in his legs and feet, some coginitve issues and will now sleep about 15 hours if left unbothered. It doesn't seem to matter how much rest he gets or if he's been very active - 15 hours is what his body thinks he needs.
We just bought a Vitamix juicer blender machine so we can pump up our intake of fruits and vegetables. There's no doubt it will help in some manner.
Good luck. Sounds like you're headed in the right direction. Deb

Bunno23
I came across your story while searching for "chronic rocky mountain fever" online. A couple weeks ago I tested positive for the neurotoxins from the disease and since then have been trying to figure out what it all means. I've had the problem for about 5 years now and have been experiencing all the symptoms the others have mentioned. I'm seeing a great doctor now though who has been doing research on tick borne illnesses for years, his name is Dr. Crist and he is located in Columbia, Missouri. He tested me yesterday for lyme as well, so still waiting to hear back on that, but he knows his stuff and I think he'd be a great person for you to talk to!!
Best of luck!