posted
I can't help questioning my diagnosis when I read so many of the posts on this site. Please correct me if I am wrong, but I am assuming many who post here are long time lyme sufferers (many misdiagnosed earlier)?
I am not reacting like many others do to these drugs and I can't even compare to the level of sickness many of you experience. My test results say I have Bartonella and Lyme but maybe I was in the early stages?
I had a 2nd trimester miscarriage in Sept (an autopsy showed nothing wrong w/ the baby but I didn't know then about my diagnosis otherwise i would have requested that she be tested for lyme) which was very significant and of course I wonder if it was lyme related, but it is impossible to know if the fatigue I felt around that time and for a couple weeks after was lyme or m/c related.
By the time I had my appt w/ the holistic dr. practice (and just decided to do the Igenex testing to rule it out--expecting it to come back negative) I was feeling so much better. I did have one episode of blurred vision in my right eye that totally freaked me out, but went away and I have this lingering dark (hyperpigmentation) on my skin that two skin biopsies did not give me a reason for, but it doesn't really look like the Bart pics I have seen. I haven't noticed an improvement since being on the meds.
I am on Rifampin, doxy and flagyl and feel some side effects from the flagyl but no real herxes. I wonder if I am not herxing because my symptoms are really minimal or if I don't truly have this diagnosis. When the NP went over my test results she immediately said I tested positive for Bartonella but was unsure about the lyme and had to consult w/ someone from Igenex. They decided I should get treatment (esp in case I decide to try for another pregnancy).
I am still able to exercise quite a bit (the flagyl has impeded my motivation but while just on Rifampin and Doxy it was like nothing had changed) and don't want to be on these heavy duty meds if I don't need to be.
If I do indeed have this diagnosis but am not really that symptomatic because it was caught early...how long do you realistically think I need to be on meds for? The NP said I'd be hard to treat because a lot of the treatment is based on how the patient reports she is feeling. Any advice would be appreciated. I am worried about long term effects of these drugs if I am not in need of them.
Posts: 376 | From New York | Registered: Jan 2011
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posted
It usually depends on how long you have been sick. Early catches need less treatment. Late cases are problematic. They can wax and wane, go dormant only to flare up months to years later. And late cases will need a lot more treatment.
If you have tested positive for bart, then you could have gotten it from a cat or a tick.
Lyme cases have involved some miscarriages. I would not be surprised if that were also true of bartonella.
Posts: 8430 | From Not available | Registered: Oct 2000
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
I consider my case pretty bad yet I still exercise and work f/t. So everyone gets smacked differently by these infections.
Ultimately, treatment is up to you. If things look really suspicious for lyme and you have stubborn symptoms, you may want to give treatment a fair chance.
You don't want these type of infections to fester. The "I can handle everything" attitude doesn't always work with lyme. It can lay you low when you least expect it.
Good luck.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Why did you choose to rule out Lyme? Do you have known tick exposures?
You can have Bartonella without Lyme. There are many more vectors for Bartonella.
Some don't herx on the abx. They just improve. If you are an early case, or not very sick, maybe you'll just improve.
Addison's disease can cause hyperpigmentation and fatigue.
In terms of treatment duration, ILADS guidelines state to treat 2-3 months beyond the resolution of all symptoms.
You could retest for Bartonella through Galaxy Labs. They are a Bart-specific lab. They can test for different strains.
Lyme is trickier, as testing is not always reliable. False negatives are common. Don't know about false positives. Were you Igenex/CDC positive, or mostly IND?
If you decide to stop meds, try to wait a few months before another pregnancy. If symptoms return, you'll want to be on abx during pregnancy. I know that sounds scary, but it's the better option if you do have Lyme.
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
BoxerMom, Galaxy Labs closed down shop to the public months ago. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I thought it was just their Web site. I saw a lab request from Galaxy Labs last week!
All the bands were negative except for **41 kDa.+ but it says that presence of only one starred band in a negative report may indicate clin significance and should be retested in 4-6 weeks
B. henselae IgM <1.20 Titer B. henselae IgG 1.80 titer "
====
You very clearly are positive for Lyme. Bartonella could go either way, since you only have a positive IgG. This could be evidence of a past infection, especially if you have been around cats for a long time, or it could be indicative of a current infection.
How much do your trust your ND? You very obviously need to treat for Lyme, but if you haven't already, you should consider getting a full workup, including virus titers, thyroid function, adrenal function, etc.
How did you arrive at your Lyme diagnosis?
Co-morbities should definitely be investigated, and hopefully ruled out.
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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posted
Thank you so much everyone and 5vforest for taking the time to copy my earlier post w/ my test results--very much appreciated.
I don't have cats and really have not been around them at all. I did have a dog (who is now w/ my parents because he is not good w/ my boys) who I have pulled ticks off of in the past a few times (he has been w/ them for about 2 years now though).
I never saw a tick or any signs of a bite, but I was at a playground w/ a friend over the summer and she pulled a tic off of her baby! I have had a neighbor get tic bits/lyme disease from her backyard. Until I saw my friend pull the poppy size tick off her baby I never was very careful about looking for them (after that I was). I know it is very possible I did get a tick bite and did not notice any signs of it.
My gut is telling me that this happened over the summer (so if I got diagnosed the end of Dec and started treatment in Jan...is this considered early or late??)
I requested lyme testing soon after my m/c because I was trying to make sense of everything. I had a lot more fatigue in my 2nd trimester (I lost the baby sometime between the end of 15-beginning of 17 weeks). The initial test (standard one) came back negative. I had made an appt w/ an integrative dr. but didn't get in until the end of Nov. I shared w/ him my symptoms but had told them they had improved a lot. He suggested the Igenex testing and I agreed to do it because I just wanted peace of mind to rule it in or out.
In addition to my test results above my CD 57 was a 48 which my NP said was one of the lower once she had seen. I have to say I have a lot of faith in this practice especially how aggressively they are willing to treat me. I had thought about getting a 2nd opinion from an ID dr. but have heard he would go more slowly. I am on Rifampin to treat the Bart and am also on doxy and flagyl.I feel like she has actually save me a lot of time by treating aggressively so soon after my diagnosis. I have heard the NP (who works w/ the integrative doc and naturopath) is very well versed in lyme treatment.
**Someone else mentioned Addison's....going to call the NP today to see if that can be tested for as well (not sure what that testing would involve). **What are co-morbites (I know I was tested for co-infections which is how she diagnosed bart). **I am getting blood drawn again this week and she also wants me to be tested for celiac and is going to re look at CD 57 and bartnonella.
Thank you again....this is a great forum!!
Posts: 376 | From New York | Registered: Jan 2011
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quote:Originally posted by lou: It usually depends on how long you have been sick. Early catches need less treatment. Late cases are problematic. They can wax and wane, go dormant only to flare up months to years later. And late cases will need a lot more treatment.
ive seen this said many times and i have to say im a skeptic.
i started treating symptoms no more than 4 weeks after they started and here i am after 15 months of treatment feeling horrible. i havent tested positive for any coinfections and have no other health conditions. im also 30 and hadnt needed a dr in 10 years before getting sick.
i dont know if it matters if you get treated early or not.
-------------------- sick since 9-09 igg, 18,23,41 reactive igm, 41 reactive Posts: 436 | From Kansas City | Registered: Jan 2010
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posted
Junkyardwily (these names crack me up!)....do you think the antibiotics could be at all to blame for you being sick? I just can't help but wonder if they can make things worse w/ all the side effects they are capable of.
Posts: 376 | From New York | Registered: Jan 2011
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And another note, if you're being testing for TtG (Celiac) and you're already on a gluten-free diet, your test results won't mean anything.
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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posted
Before becoming pregnant again consider the possibility that your child, if carried to full term, could be born with LD. Please see the movie "Under our skin".
Posts: 31 | From Wisconsin | Registered: Aug 2010
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posted
Babbs--I did just see Under Our Skin and because of that movie I have decided to put the thoughts of pregnancy out of my mind for awhile. I totally related to the woman whose baby was perfectly fine at 15 weeks and then a couple of weeks later no heart beat. I just wish I had known to ask for the autopsy to look at lyme.
5Vforest--I eat healthy but am not on a gluten free diet.
Just spoke to the NP and she is willing to send me a script to have blood work drawn for Addison's. I have to say she is so good about listening to me and letting me get all of this blood work. I also had the blood work to look at Bart, Celiac and my CD57 so that info should be in next week.
You are all great. Thank you!
Posts: 376 | From New York | Registered: Jan 2011
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posted
5Vforest...thank you so much for the link! I have been told that I am borderline hypothyroid and can relate more to those typical symptoms then to lyme or addison's so that is something else I may want to explore. I am a pretty solid sleeper. Thank you!!!
Posts: 376 | From New York | Registered: Jan 2011
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posted
anna-the abx(antibiotics) maybe making me feel worst but im sure of one thing; i felt this bad when i first got lyme and wasnt on any abx so whether they are helping or not im not sure but im near positive they arent causing the problem.
-------------------- sick since 9-09 igg, 18,23,41 reactive igm, 41 reactive Posts: 436 | From Kansas City | Registered: Jan 2010
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posted
I do feel like I am in such the minority on this board w/ feeling OK overall. I really hope my test results show some kind of improvement. I am willing to do another month or two of meds, but I can't imagine doing this indefinitely if I can't justify it symptom wise.
Posts: 376 | From New York | Registered: Jan 2011
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