posted
I am convinced that I have been suffering from an infectious disease. My symptoms have been very similar to Lyme and I have been treated for Lyme. I do well on abx and then relapse when I go off. I had a muscle biopsy and had it tested for Lyme PCR - came back negative.
A month before coming down with these strange symptoms, I had some sort of insect bite but never saw what bit me. The area bitten felt as if something was crawling inside my skin...and lasted until I put ice on it.
I'm desperately trying to research all the possible illnesses that could be causing my problems. It's definitely something unusual or rare! And I would really appreciate any suggestions you may have.
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
| IP: Logged |
posted
Something definitely got me! I really don't know what it was. I would think a tick would have held on and I would have seen it since I certainly felt something on my ankle! From what I've read, a spider bite would have brought immediate problems and not be delayed like tick bites.
I went off IV abx in mid Oct and relapsed around Thanksgiving. I went back on orals (Ceftin, Cipro and Azithromycin) but just kept getting worse. Now I'm on Prednisone because I needed to get through Christmas! I hate the drug, but it does make me able to function.
The ID doc has suggested going back on IV abx and monitoring my symptoms and labs like the LLMD was doing, but I'm still debating if I want to do that or find another doc that will continue to seek a diagnosis. This is so frustrating!
Posts: 154 | From Medford, NJ | Registered: Jun 2006
| IP: Logged |
bettyg
Unregistered
posted
look for a post by MELANIE REBER ON MEMORIAL PROJECT; she lists ALL CO-INFECTIONS 20-25 of them now!
do a search found at top under post reply
co-infection list MEDICAL text only
any date
look up melanie's membership no. and then place that no. there and hit search key!
this way you'll find HER detailed list.
look for any post from melanie reber; it shows her membership no.
IP: Logged |
david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
The problem is that there are a lot of possible diseases. To narrow it down you have to look at the risk factors, and some basic info. where did you get bit? Did you see the bug? How long did the rash last? How long did it take to feel symptoms? What drugs helped and how long did they take to take effect? How long before relapse?
The diseases listed on Lymenet are but a few of all the possible ones. I will try to help if I can.
Posts: 1184 | From north america | Registered: Feb 2003
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Unless you have traveled out of the U.S. the following lists the tick borne illnesses in this country - as well as describes the symptoms:
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
These are some links with information on insect-borne diseases. Read things carefully, and sensibly so you don't convince yourself you are going to die from a rare disease that's only in the jungles of Africa.
posted
Thanks for all the responses. I will do more reading tonight. Thanks for the warning of being sensible when reading! I've been researching this for 15 months so I've learned not to freak at everything I read! But it may help someone else just starting their research.
David, I never saw what bit me. I felt a tickle on my ankle like a blade of grass touching the skin. But the feeling wouldn't go away. It actually began to feel like something crawling under the skin. After about an hour of scratching, slapping, etc. to get rid of the tickle, I put ice on it and it went away.
I never had a rash...and I kept an eye on it for a week or so. A month later I started with migratory joint pain. Six months later it went into my muscles. A tick sounds responsible for the symptoms I have, but I never pulled one off my body. A spider bite probably would have been more instant. Who knows!
In all likelihood, I don't have Lyme...but this website has the most valuable information I've found on the web...and the friendliest people!! I so appreciate all your help!!
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
| IP: Logged |
posted
Just to let you know, there are some people who never had a tick on them or a rash who do have lyme, I am one of them. I had to go by my symptoms and plead with a doctor here to test me. Which I got the standard anwser "There is no lyme in Michigan, you don't have it, its imposible"
He did test me anyway using an ELISA, which came up negative. Luckily I knew someone else with lyme and presused it further, and went to NY to a real LLMD. I was tested again many times and was positive.
I also releapse when I go off my Abx, I've been on them for 2 years. Its just not dead yet. Maybe you weren't treated long enough to begin with???
david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
If it was a fast bite like that, one of the biting flies is a good posibility. The damn things can carry a number of not so nice things. It usually only affects animals due to their higher risk of exposure but many of the things that the animals can get can also infect humans.
It is hard to locate a comprehensive list of infections but there are some around. One not so well known resource is a site called www.healthgene.com. This is a company that specilizes in PCR testing for a variety of animal infections (they do not do humans). On their site is a summary of infections that can be detected by them but more importantly they provide a brief synopsis of each disease and list wether or not humans can be infected.
The location that you received the suspect bite is extremely important in trying to figure out where to start as certain things are endemic in different parts of the country and the world. As an example, Chagas is normally associated with south and central america but I have heard that it sporadically occurs in texas. Similalry, there are some areas in south central states that also have endemic microfilia mosquito resorvoirs. These came also infect humans and are a bugger to diagnose.
Keep in mind that even though antibiotics have a proven positive effect, you may not be dealing with a bacterial infection. Some protozoa infections are also affected by certin antibiotics so knowing which drugs were effective will also fill in a piece of the puzzle.
The migrating arthritis is interesting as that is a very common sign associated with Lyme. Brucella (and bartonella) are also known for cuasing joint problems and can also do this on a cyclical basis like lyme but I have not heard that they can cause short term migration as I think you discribe (one joint in the morning, a different joint at night).
In terms of viruses, things like Parvo B19 (fifths disease) can also cause joint and neurological problems in adults. These are only a few examples so you should keep in mind that you might be looking at a combination of things to produce what you are seeing, possibly with a common trigger that is anitbiotic sensitve.
Fell free to PM me if you want.
Good Luck.
Posts: 1184 | From north america | Registered: Feb 2003
| IP: Logged |
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
I was so pleased to see this post tonight, because finding out vectorborne infections in the USA and different states is exactly what I have been working on for weeks now.
Thanks to everyone for providing such great additional information that I had not run accross as of yet!
The list that I began with is below, but the more I read and study each state...the more I am convinced that many co-infections that are quite common...are NOT readily discused by medical professionals.
So, yes, it does pay to do your homework! Hopefully, the memorial site state pages will make that a bit more accessible to all.
Lyme disease
Babesiosis
Bartonella
Brucellosis
Colorado Tick Fever
Ehrlichia ewingii
Encephalitis/ meningitis
Hepatitis C
Human Monocytotropic (or monocytic) Ehrlichiosis (HME)
Human Granulocytotropic (or granulocytic) Anaplasmosis (HGA, formerly known as human granulocytotropic ehrlichiosis or HGE)
Leptospirosis
Morgellons
Mycoplasma
Powassan Encephalitis
Query Fever
Relapsing Fever
Rocky Mountain Spotted Fever
Southern Tick Associated Rash Illness- STARI
Tick Paralysis
Tularemia
Typhus
West Nile Virus
BTW, this is only a 'basic' list...there are more to be added.
My best, melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
| IP: Logged |
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
And also...PLEASE stay away from the steroids if there is any possibility at all that this may be caused by tickborne diseases! Very important!!!
Posts: 7052 | From Colorado | Registered: Mar 2003
| IP: Logged |
posted
Thanks, Melanie. You listed a few more that I hadn't come across yet.
I know about staying away from the steroids...unfortunately my relapse was so bad that was the only thing to make me able to function again. I've been on 15mg for 3 weeks but started lowering it today. Dr doesn't know...but my beard starting to come in and it's just not my style!
Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
| IP: Logged |
posted
Wow! What an amazing list! Never would have thought about some of these illnesses as being TBD.
I have a question about Hepatitis C. Is there research that discusses Hep. C being spread by ticks or other vectors?
I ask because my ex-husband was recently diagnosed with Hepatitis C and has none of the "normal" risky behaviors associated with it.
The best he can recall, he might have become infected during the 1970's when he worked as an EMT and medical professionals weren't using
universal precautions back then. However, in my research about Hep. C, I could find no information which discussed the length of time that the illness could be dormant.
It had seemed far-fetched to me that he has had Hep. C for so very long. Because he has worked in the medical field for many years, he has been tested and retested for all kinds of transmittable diseases.
He did not bother to notify me when he tested positive for Hep. C....his daughter called me and told me and I was tested right away, negatively thank goodness.
I am not sure what symptoms he was or is having. We do not speak to each other any more. It would not be acceptable to my replacement.
Is it possible that Hepatitis lies dormant for a long period of time? Is it possible that even if I have tested negative but have definitely been exposed that I could test positive in the future,
sort of like what happens with Lyme? Is it accurate to think that Hepatitis is a blood-borne disease and contracted differently? I am really
confused by this. Anyone?? Thanks! Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
| IP: Logged |
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Good morning Janet,
Yes, there is research re: Hep C being spread by ticks and other vectors...I wish I could put my hands on it easily right now, but I have been doing SO much research recently, that I didn't save that particular piece of information...sorry.
Yes, it is possible that Hep C, along with all the other co-infections can lie dormant for a long time; and come up to the surface whenever your body is stressed or your natural immune system is faltering.
As far as testing for ANY of the co-infections- well that is always a gamble at best. So, we must always rely on clinical symptoms...and sometimes HOPE that testing will cooperate!
My best, Melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
| IP: Logged |
posted
Thanks for your response, Marnie! I know you are so busy finding information on so many things....
and your contributions here and elsewhere are VERY much appreciated.
I just had the thought that if my ex-husband had contracted Hep. C as a TBI, perhaps I should continue to be tested for it. I know that my
last tests regarding my immune system show that it is on hyper-drive (according to my LLMD) and that I could "crash" at any time. What "crashing"
means I surely do not know. I thought I was already crashing. I am concerned that when and if I can find some doc willing and able to prescribe long-term antibiotics and I have the
propensity for liver disease, that the meds might hurt my liver much quicker than for most people in BB and coinfection treatment. Just another
puzzling thing about these infections. I am getting so discouraged not being able to get treatment and then I am also fearful of ABX treatment at the same time.
I worry that I won't be able to withstand anything that puts more stress on my liver. I am considering body cleansing which has three parts:
First, a colon cleanse for one month; Secondly, a liver cleanse for one month and Thirdly, a kidney cleanse for one month. This is supposed to be repeated at least once more, making the treatment
a 180 day one. The cleanse uses herbs only and the site states that the cleanses are not difficult, but rather pretty easy on these organs. The do a slow, but effective cleanse.
Since I am not on ABX and don't know when or how I will be, I am wondering if I'll herx on the cleanses or start a new round of symptoms, including other illnesses emerging.
I know that it is important to be in charge of my own health care but I am dancing in the dark here. Any suggestions by anyone would be appreciated!
Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
| IP: Logged |
posted
Sorry Melanie!!!!!!!! I called you Marnie. It's back to bed for me. I am a danger to others!
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Big Grin]](biggrin.gif)
![[Wink]](wink.gif)
![[group hug]](graemlins/grouphug.gif)
![[Roll Eyes]](rolleyes.gif)
![[Embarrassed]](redface.gif)
Printer-friendly view of this topic