posted
My daughter was diagnosed with Bartonella, Lyme, and Rocky Mountain Spotted Fever in Nov 2009 by an LLMD. She is currently taking 200mg of Doxy per day. Her symptoms were as follows:
Flu-Like Symptoms for a week...went away and then came back. Headaches Round red spot on back Joint/Muscle Pain Loss of Appetite Exhaustion
She has good days and she has bad days, but I'm seeing that is all normal. The dr. said she would probably get worse before she got better, which is exactly what happened. The dr. also told us that she thought we caught it early enough that there wouldn't be any long term issues. On Dec. 18 she called me from school and said she had horrible head pressure...it wasn't a headache. She said she had never felt anything like this before. So off to the ER we went. Bad move on our part...we had to go thru the whole infectious disease crap. They gave her a CAT scan said nothing was wrong with her and sent us home.
On Jan. 7 we went back to the LLMD for our appointment and explained that her symptoms really weren't improving. She was still having good days(not feeling 100%)and bad days. We told the dr. about the head pressure and she said for us to get an MRI(Jan. 23) and SPECT(Feb. 4). They took more blood.
Blood work came back saying the Bartonella number was higher than the original bloodwork. MRI came back saying everything looked fine. The dr. bumped up the Doxy to 300mg per day.
In the meantime my daughter is not feeling any better and is incredibly irritable, slightly hopeless because she isn't getting better and seems a little depressed to me. Every time I try to talk to her she screams at me and says she doesn't want to talk about it.
I read all the posts on here and see that my daughter doesn't have it nearly as bad as everyone else, but of course I would never say that to her. I also don't think its a good idea for her to read this forum because I don't want her to know what she could be facing. I just want her to get well.
I guess my question is should we be seeing some improvement since she started the medication back in November. When should we see improvement? Everyone around (family & friends) think that I should be going to a million different drs and hospitals to try to help her, but I know my LLMD is very reputable. I guess I'm just asking for anyone's thoughts and inputs. Plus I have all these test results that I stare at every day and try to make heads or tails out of them. It seems like every since I left her LLMD everything she explained to me about the test results went right out the window...so much info. Thanks for listening.
Posts: 107 | From New Jersey | Registered: Nov 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I am so sorry you daughter is going through this!
It took me about a year and a half to see any improvement. I went from about 10% of normal functioning to about 25%. Not to imply that its that way with everyone.
I definetly don't think 3 months is enough time to see improvement for most ppl. Some do, but I would say at least 6 months to a couple of years for most.
I also happen to believe that antibiotics can make you feel worse sometimes. Not just from herxing, but just the meds themselves. They are chemicals that we are pumping into our bodies.
Also how well we detox plays a part in how we feel. But others will have tons of info on detox.
Hope she feels better soon!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Does he ever plan on treating the bartonella? I'm glad he increased the dosage of doxy. Typically adults take at minimum 300 mg, usually 400 per day according to Dr. B's guidelines.
If you haven't seen them already, check out the treatment guidelines at www.ilads.org
Treatment has its ups and downs, that's for sure. She's really just at the beginning of treatment, so it may be a while before she sees significant improvement.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
sixgoofy - she said that is why she increased the dosage of doxy. She also told me that Doxy treats all three of these things. Doesn't it?
Posts: 107 | From New Jersey | Registered: Nov 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
My understanding is that doxy does work for all 3 of those. There are other meds also that can be tried if it doesn't seem to do the trick.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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progress is measured in months...so if she started taking the proper dose of doxy the second week of Jan then you really need to sit back and wait. In my opinion those first months on doxy at 200mg do not count at all. Wrong dosage.
Because of how this bacteria cycles it takes a long time to get the load down. When your doctor said it would get worse before better he unfortunatly was not talking about days but rather months. of course the con-infection complicates things and i'm no expert on that.
That being said it does get better and we all know about that head pressure. Its unlike anything i could describe...and many have become depressed becasue in fact your brain chemistry gets messed up by all the toxins.
Find some time to read Dr. Burrascano's guidelines and work on a plan of how you will keep your daughter moving. Laying in bed in my opinion is the worst thing you can do(unless you are truly incapacitated)yet its what this disease actully tells you to do.
Find time to walk or something that gives her and yourself some level of control. I know this sounds easy...its not. But its what has worked for me and others as well. I have always been prone to depression but since adopting a better eating plan and staying active(very hard in the early part of my treatment) it has never been an issue for me...quite suprisingly i might add.
if you need some inspriation please check out my video on Youtube...search 5k bald lyme.
and if you watch it remember i struggled to walk a straight line at the begining of treatment.
Dave
Ps..also chart her symptoms each day so you can truly measure how she is doing....and hang in there.
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
It may take some experimenting to see which antibiotics help her.
Bactrim DS (which was the important part for me) with Zithromax seemed to help my Bartonella. That could be one thing to try. Other people respond well to Levaquin or Rifampin.
Lyme treatment can take time, but after awhile, if you are seeing no indication that what she's on is helping, you may need to add another antibiotic or switch drugs.
Amoxicillin and Bicillin (not together) helped me the most for my Lyme, but I didn't have RMSF, so that could be why she's still on Doxy.
Posts: 4590 | From Midwest | Registered: Jun 2008
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There is also newbie info in the very first link here in Medical.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Um, I don't know who you are seeing, but it doesn't sound like she is being treated aggressively enough. The doxy dosage sounds too low, esp at first, and there isn't adequate abx for the bartonella, I don't think.
you might either ask for more adequate meds or look at seeing someone else who treats more aggressively. You don't want to miss this important window. Not that you are totally missing it, but it sounds like not adequate treatment. Read the Burrascano guidelines.
Posts: 3792 | From around | Registered: Mar 2008
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posted
I think one of the problems might be that my daughter is only 92 pounds and they were really afraid about how this would affect her stomach and were trying to start off a little slower, but clearly that must not be working either.
Posts: 107 | From New Jersey | Registered: Nov 2009
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posted
I have only been sick since the end of May, 2009. I have mild symptoms, and my LLMD does not (so far) think I have any coinfections besides Lyme.
Two months after my tick bite, I took Ceftin, 500mg 2x/day, for 3 months. That is a normal dose for an adult (and I weigh a lot more than your daughter), but probably too low for Lyme, I have since learned.
During that 3 months, I had ups and downs just as before taking the drug, and then sometime during the third month, I had the sudden realization that my usual level of mental energy and interest in things had just returned, and I was sure I was starting to get better.
Before that, it was hard to tell, but I think I was about the same. I might have seen a difference if I reread my symptom diary for each day.
Two days after stopping that drug, which was prescribed by my GP, I was worse again, as bad as I had been before taking the drug.
Then I took some herbs for a month while waiting for my first LLMD appt., and felt worse at first, but was having more good days than before by the end of that month, and was well enough to drive across the country to see my LLMD.
When I returned from that trip, in early December, my LLMD started me on doxy at 200mg/day (100mg morning and night).
He had me stay on that for one month, and then increased it to 400mg/day (double, and a more usual dose for Lyme for adults). I think he was concerned about possible herxing and side effects.
I am glad he started it slowly, because after the first 3 days, I had a bad herx where I hurt too much to get out of bed for 3 days, and then felt bad for another week, but then started to get better again.
Since doubling the dose I have been expecting another bad herx, but haven't had one. I am back to having the same ups and downs I have always had since I got sick--maybe slightly worse since I've been on doxy.
I really cannot tell yet any sign that I'm getting better. I take comfort in the fact that I am sure I am not getting worse.
Three months on the first drug was not enough to get me better, so I am assuming it will take a minimum of six months on the doxy for me to know if it is really helping, and even then, I might get sick again after I stop it.
I have my next LLMD appt. in a month, where he will look at some more blood tests and consider how I've done the past 3 months, and decide whether to change or add to my medicine.
Recovery seems to be a long process, even if you catch it early and have mild symptoms. At first, I mistakenly assumed that because I was not extremely sick, it would be easier to get rid of.
Now I just consider myself lucky not to be suffering as much as many people do.
I am trying to learn to be patient about the length of time it is taking. I met another patient in my LLMD's office who has been fighting Lyme for 4 years. I certainly hope it doesn't take that long for me.
Hey, maybe that's why they call us "patients," haha.
I have had a lot of emotional volatility that I believe was either caused by the disease, or my fear and anxiety over having it and not being able to find help for several months.
That included nightmares, rebellious tantrums, and lashing out at my loved ones.
The emotional stuff has calmed down in the last couple of months, either because I'm on better meds now or because I feel calmer now that I found a good LLMD and explained everything to my family and friends and got their support.
So I still don't know the cause of my emotional problems, but I empathize with your and your daughter's frustrations.
I was also misled by the whole "You'll be cured in 3 weeks" standard line--I reasoned that surely every reputable doctor in the country couldn't be blind to the fact that people were still sick after taking drugs for that short a time, so the reason they insist it's enough to cure you must be because most people's symptoms appear to improve that quickly.
Now I know that is not the case. Very, very few people show improvement, much less full recovery, in that short a time.
Good luck to you. My LLMD was VERY encouraging and told me there is no reason why I can't get better. It just looks like it is going to take longer than I expected.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
i had a bite in early september, and started treatment in mid october (doxy 100mg 2x, then after reading upped my dosage to 200mg 2x on my own). i have since switched to 500mg ceftin 2x day, now 500mg zithromax 1x day.
i have only a fraction of symptoms that others have. however mine are bad enough to destroy my quality of life. persistent neurological symptoms and constant battles of 'lyme flu'.
my point is i "caught it early" and i "have a milder case" and im only 31 years old and have noticed almost no improvement. add to the fact that i have completely changed my diet, no more sugar or alcohol. i do detox baths. i also take countless amounts of supplements. one would think i would be showing some big time improvement. NOPE. frustrating as hell.
Posts: 13 | From Kansas City | Registered: Jan 2010
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posted
Something to note about head pressure and Doxy.
One of the less known and less common side effects of Doxy is raised ICP.
Raised ICP can cause pressure type headaches.
Since she did have MRI's and they came out clear it probably is not a problem but just something to keep in mind.
Also, Doxy can cause bad headaches in some people which may or may not be part of a herx.
Posts: 376 | From New Jersey | Registered: Jun 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
My aunt actually got well in 3 weeks, but she started antibiotics 3 days after the tick bite.
Those are the ppl that get well quickly. The ones that know they were bitten; go to the doctor ASAP; and the doctor is actually willing to treat them.
But that hardly ever happens!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Thanks for all of the different thoughts, opinions and advice. It is great to know that people do care out there. Keep the advice coming please.
Posts: 107 | From New Jersey | Registered: Nov 2009
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posted
Since her MRI came back okay...should I cound on the SPECT scan to be okay as well. Can one come back fine and the other one have bad results?
Posts: 107 | From New Jersey | Registered: Nov 2009
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posted
I too started to get head pressure starting back in August, 2009. I was diagnosed last May after many months of numbness, fatigue, and shoulder, knee, arm pain which was misdiagnosed for at least a year. I had a rash and was told it was ring worm then started to get other symptoms. I should have been more proactive given my husband has been struggling for three years with late stage lyme because no one would treat him.
Anyhoo...that is another story. My head pressure is less now. It still comes and goes. Where is the pressure located? Mine is usually at the base of my head where there are two lobes on each side right where they attach to my neck. It used to travel up to the top of my head but it hasn't done that in a while. And boy do they get swollen. I was on tetracycline for awhile and while it has subsided it is still there from time to time.
Posts: 22 | From Massachusetts | Registered: Jul 2007
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
I don't think Doxy can get the bart in many cases. I would defintely add either bactrim or rifampin...and watch to see if the titers go down.
I think that Rifampin is probably better. Levaquin is anohter option but not sure what age she has to be to take it.
Be sure to read Dr. B's guidelines and I would agree with the others that your doc is not aggressive enough.
I would definitely add a real bart drug.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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posted
I don't know much about the SPECT, but if you'll do a search here you will find many discussions on it. I think it is more likely than an MRI to show evidence of Lyme.
(but then you need a Lyme literate MD looking at the results)
Look for the little word "search" in the upper middle of this page.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Ditto what some other are saying about the Bart. It must be treated IMO. My son only weighed a few lbs. more then you daughter when he started treatments. He was on 3000mg Amoxcy with Probencid to keep blood levels high, along with Zith adult dose. Then we d/c the Zith and added in Rifampin for 6 months to treat the Bart. It worked for him. I do not think that Doxy hits Bart IMO.
Posts: 476 | From Columbus, Ohio | Registered: Aug 2007
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