posted
I was recently diagnosed with Lyme.. I've now been on Doxycycline for 10 days and feeling better overall, but a little fatigued. Looking back on some of my symptoms I'm concerned I may have/have had a co-infection.
I'm a Male, 26 years old, in good shape and otherwise good health but I don't have healthcare, so I'm hesitant to see an infectious disease Dr. unless I'm sure I need it.
I first developed flu-like symptoms around June 19th; I had a fever (typically around 101-102, but spiking as high as 104.3 at one time) along with chills, night sweats (big time) and soreness in my neck. This lasted about 7 days, I went to the doctor twice and they told me I just had a virus and to wait it out. A blood test revealed a low platelet count and low white blood cell count (which I was told is fitting with a viral infection) During this period I developed what in hindsight was the bulls eye rash on the back of my leg, but at the time I thought it was just from sweating and being in bed for a week. The second time I went to the doctor (on the 7th day of this fever) he prescribed me an antibiotic (ciprofloxacin) as a precautionary measure. Within a day or two of this 10-day treatment I felt much better, although I broke out in 5 or 6 other light red rashes on my arms, cheeks, stomach and legs. I was told the rash was typical of a ``viral syndrome'' and they went away after a few days and I felt fine.
Over the course of the next few weeks I began to feel a tingling fatigue that became more and more frequent, until finally I went back to the doctors and requested a Lyme test. While I was there the Dr. said it might be strep, and again put me on a precautionary regiment of amoxicillin. AGAIN over a few days the amox made me feel much better until the Lyme test came back positive and they switched me over to Doxycicline 100mg twice a day for 30 days. They also gave me an EKG which came back fine .. they said they do it now to all Lyme patients. I now feel better overall, I'm able to work, exercise etc, but my overall energy level feels a little low and sometimes in the morning or later at night I feel hints of that ``tingling fatigue''
Does this sound like a fun of the Mill case? The total time between my first symptoms and the start of the first antibiotic was 7 days (although it was just a 10 day course of ciprofloxacin ). It was 8 weeks between the first symptoms and the diagnosis and Doxy treatment.
What do you guys think? (thanks in advance!)
[ 08-18-2009, 04:35 PM: Message edited by: the3030club ]
Posts: 339 | From Outer Space | Registered: Aug 2009
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posted
I think you are super lucky you caught it early! But many times, 30 days will not be enough. If you still are feeling sick I suggest getting into a lyme literate dr.
posted
Please check out the Dr. B guidelines on www.ilads.org
Don't waste your money on an ID doc, they know little about Lyme.
Be sure you're taking a high enough dosage of the doxy. 200 mg twice daily is the usual. Most docs will not give you a high enough dosage for long enough.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Thanks , i hope so. could that week long high fever have been a symptom of Lyme?
Posts: 339 | From Outer Space | Registered: Aug 2009
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posted
Thanks for the input. I notice more fatigue now than when i was one the amox. I'm worried i'm missing something.
Posts: 339 | From Outer Space | Registered: Aug 2009
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
If you can get yourself to an LLMD, he/she will test you for coinfections and get you on the right regimen of antibiotics and other treatments.
I agree with others, steer clear of infectious disease docs, as they rarely know what they're doing with Lyme, and most don't have a CLUE when it comes to coinfections.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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bettyg
Unregistered
posted
welcome,
please break up your LONG PARAGRAPHS into many SHORT ones and double space between each paragraph as you did th others ok for us severely neuro lyme folks who can not read or comprehend as is.
Welcome; I'm so glad you found us!! You've come to the right place for education and support!
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
UNDER OUR SKIN dvd LYME DISEASE documentary, www.lymediseasefilm.com go to this site to view trailer of UNDER OUR SKIN 5 min. Clip! Premiering 2008!! on big screen 09 in 10 LARGE CITIES ONLY!
please get a western blot igm and igg blood test drawn LOCALLY on a mon. or tues. and sent to the below ok! all details are there.
IGENEX , CALIF. BLOOD TESTINGS ...check current $$!
* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be! * Mine was sticker $$ shock on various testings done by my 2nd LLMD/new to me in 4=06. Those tests/results are found elsewhere in my links/advise.
* Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes
* The below tests were done for ME; you MAY NOT NEED them all ok! :
* western blot IGM & IGG, this is MANDATORY for you which costs $200 total for 2 tests done; 6.09 same prices still. * * ******************************************************* * OPTIONAL ONES ARE:
* co-infection panel for YOUR AREA OF COUNTRY; * PCR WHOLE BLOOD...this is what my LLMD ordered!
It's PREPAY! unless you are on medicare; IGX will file the paperwork & it's FREE to you.
go to www.igenex.com and read over their info. Prices go up twice a year: MAY and NOVEMBER!!
* * have blood drawn MON. or TUES. only; you don't want your blood sitting in post office over the weekend; will ruin the results!
* Also, call 1-800.832.3200 for CURRENT PRICES! * They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!
* You need to DOWNLOAD IGENEX's required form.****************************************************** * * MD, DO ,ND, AC, DC are all fine** must sign, date, and show DIAGNOSIS CODE on there why he's ordering the test.
Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks! Bettyg * * When you get your results, please post them in MEDICAL; * Post ONLY the POSITIVE & IND ones .... not the negative ones!
GET COPIES OF ALL YOUR SPECIAL BLOOD TESTS: western blot igm/igg and/or co-infection tests always!!
* Also, look for post by LYMETOO/TUTU on DR. C's (Missouri) explanation of the western blot IGM & IGG numbers, below!
posted
Can Anyone recommend an LLMD in the Hudson Valley - New York - Orange County Area?
I don't have Health Insurance, so someone who works with Self-Pay patients is a plus.
Posts: 339 | From Outer Space | Registered: Aug 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
3030, everything you described, the fever and all, are typical symptoms of lyme disease.
Know this, that lyme is rarely contracted alone. It always has a number of coinfections that come along with it. The more coinfections you have, the more complex the treatment. Virtually every lyme sufferer has at least one coinfection, so you really need the lyme coinfection tests.
"A huge body of research and clinical experience has demonstrated the nearly universal phenomenon in chronic Lyme patients of co-infection with multiple tick-borne pathogens." (Burrascano guidelines, p. 4)
Treating lyme disease is an expensive proposition. Most lyme doctors don't take insurance, so they all take self-pay patients. You are expected to pay for everything on the day of the appointment.
If you start good treatment now, hopefully, you will be finished in a few months. If you don't get in with an expert, you will continue to have trouble until you finally get to an expert. Lyme and its coinfections do NOT go away by themselves or by 30 days of antibiotics. You need different antibiotics for each coinfection.
You want Igenex testing for lyme, babesiosis, and bartonella. That is how you will find out what diseases you have. The babesiosis and bartonella are lyme co-infections. A good lyme doc would test you for all of these.
Igenex does not take insurance, so these tests will cost you over $600.
You are going to have to ask family or others to help you financially so that you can afford lyme testing and treatment.
Post in "Seeking a Doctor" and tell the states you are willing to travel to to see a doc who is good at treating lyme disease.
Then, make inquiries about the doctor (contact Support Groups in that state--see link on left side of any LymeNet page), pick your doc, and get to him to start treatment.
Just know that a good lyme doc can charge $400 or more for a first appt. Following appts cost less because they take less time.
And, the medications prescribed can be very expensive also.
To educate yourself on this disease, you should read and STUDY the Dr. Joseph Burrascano lyme treatment guidelines found here:
I recommend to everyone that they make the Burrascano guidelines their criteria for choosing a doc. If the doc doesn't follow the Burrascano guidelines, don't make an appt with him. Ask when you call to make the appt. And study the guidelines so you yourself can evaluate the doctor's treatment. If it doesn't line up with Burrascano, move on. I wish I had known this and done it years ago.
Burrascano is featured at all the lyme conferences. He is now traveling around the world teaching doctors in the US and other countries how to cure lyme. His are the only lyme treatment guidelines you will find on the ILADS website. That says a lot.
Here are a few points from Dr. B's guidelines:
You must attack both the regular and cyst form of lyme simultaneously--requires 2 different antibiotics to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections (including mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease speciality lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babs is suspected, and require adherence to rules such as low carb diet, no alcohol, rest, and exercise as the patient is able to do it.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
These are just a few of the important points you will see in the guidelines. You want a doc who does EVERYTHING Burrascano says to do. He treated lyme for over 25 years, and compiled what he learned so that other docs could benefit from it. Read it in his Guidelines.
Also, a Boston TV station did a great show on lyme disease a few months ago. Here is the link to it: http://www.kettmann.com/Lyme
When you get to the site, select the link to view the show. The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it. You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease.
If you educate yourself about the disease you have, you will be able to made good health care decisions. Lyme is a formidable disease. Make it a priority to get it treated so you can get on with your life.
The doc is the key to getting rid of this complex disease, my friend. The doc is the key.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I'm in your boat! 27, healthy, active, and then wham! Except that my problems were mostly neuro.
One thing to keep in mind is that Lyme can cause a cyclic pattern of feeling better-non to feeling better. I got really sick and was diagnosed with a couple of problems (B12 def. for e.g.). But then I got "better" for a couple weeks and continued with my field research... and then crashed harder partly because I was overworking myself (because I was better, right?)
Not treated properly Lyme can come back during times of stress / other illness. So again, you really want to make sure that you treat it well.
If you start to feel bad again, start keeping a journal of how you feel. Be sure to note when new symptoms appear and how you feel on a scale of 1-10. This can be used to make a later stage Lyme diagnosis (as it was one crucial part in mine).
Unfortunately there is no great test for determining if you are 'cured' so my advice is go to a recommended LLMD who is familiar with treating patients to their *stabilized* (this is key) conclusion. Given the potential for really major problems down the road I suggest that you find a way to find a doc and read as much as you can about this disease.
Good luck!
Posts: 36 | From Corvallis, OR | Registered: Jul 2008
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posted
the3030club -- I am in the same boat as you except mine happened a month earlier.
Listen to TF, TF is very knowledgeable.
I was give the same dosage as you, but I upped it bc it wasn't working. i felt like crap.
I still feel like crap, but it follows Dr. B's guidelines. I don;t have fevers, but I have the muscle and joint pain and stiff neck.
Just like ebbakarin said, keep a journal to monitor your symptoms, weight and temp. The office visits with an LLMD are once a month at first, so you will not remember all things that ail you in that time. Well at least I don't.
I was very foggy at first, but some of that is starting to go away.
Good luck and let me know how you do.
To get a good LLMD, you will prob have to wait to get in.
Please pay attention to your supplement list. I started taking them and feel slightly better. And drink LOTS of water because you are on so much antibiotics. Put a lemon in the water as well. It's suppose to help with the detox I believe.
Posts: 134 | From NY | Registered: Aug 2009
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posted
Opps forgot to mention to listen to bettyg also -- don't want to leave her out. Her info is very helpful =)
Posts: 134 | From NY | Registered: Aug 2009
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Question for TF:
Does Igenex test for mycoplasma types?
Also, aren't high fevers indicative of babs? I had his exact symptoms- sore neck, high fevers, chills, and night sweats. Can Lyme also cause them as well?
Just wondering.
Thanks, CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
I'm now on my 11th day of the doxy and i'm feeling MUCH better. Granted aside from the first 7 day fever-flu thing my symptoms have been overall very very mild.
I would say aside from a slight fatigue and stomach irritation (which i'm pretty sure is just from the doxy itself) i feel 100%.
Could it have been that the antibiotic (ciprofloxacin) i happened to be put on just 7 days after the first symptoms helped suppress the lyme?
Posts: 339 | From Outer Space | Registered: Aug 2009
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posted
Mine was caught after 1 month of being bitten. Was put on 6 weeks of Doxy and thought I was cured (Began exercising, felt great, etc). After 2 months, fatigue started again to the point I had to quit my job.
An additional 4 more months went by with Family Physican believing I was cured of Lyme not knowing what was causing fatigue -- became bedridden, unable to drive, etc.
After that learned about LLMDs: Tested positive for Lyme and co-infections and am beginning to feel better again though I still have a journey ahead of me.
In summary, please consider seeing am LLMD. My LLMD who was in the movie "Under our Skin" tested for Lyme and co-infections using Quest Diagnostics which covered blood tests. Many recommend Igenex which is great, but if you dont have money, sometimes at least this is a starting place.
This is a very important decision you will be making. Please get the right help needed as soon as possible. Co-infections need to be tested.
Posts: 515 | From In His Loving Care | Registered: Apr 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
3030, it could easily be that the cipro and doxy are helping you fight this disease.
But, it could also be that lyme disease flares every 28 days. So, see what happens when you are 28 days away from your last period of sickness. Mark that date on the calendar now. What happens on and around that date is important to write down.
Your original post says you first developed symptoms around August 19, which of course is not the correct date. It would be good to give us the correct date. How long it took for you to start on medication is important to deciding how long you need to treat. You want to record that date for your records.
Regardless, you will need to remain on antibiotics and should have babesiosis treatment added to your antibiotic regimin since Burrascano says that at least 66% of all lymies test positive for babesiosis (so most likely well over 66% actually have babesiosis).
Do not be lulled into a false sense of wellness is my main message here.
Many people get the one week sickness from lyme disease and then are fine for some indeterminate period. Then, the lyme re-emerges with various symptoms that could be different from what you had in the original one week of sickness. All it means is that the lyme disease has "gone underground" so to speak.
I really hate to tell you that since it is so good that you are feeling well. And, I hope you never feel sick again. But, had to tell you just to warn you of the typical behavior of this strange disease.
This is from p. 17 of Burrascano:
"It has been observed that symptoms will flare in cycles every four weeks. It is thought that this reflects the organism's cell cycle, with the growth phase occurring once per month (intermittent growth is common in Borrelia species). As antibiotics will only kill bacteria during their growth phase, therapy is designed to bracket at least one whole generation cycle. This is why the minimum treatment duration should be at least four weeks. If the antibiotics are working, over time these flares will lessen in severity and duration. The very occurrence of ongoing monthly cycles indicates that living organisms are still present and that antibiotics should be continued. With treatment, these monthly symptom flares are exaggerated and presumably represent recurrent Herxheimer-like reactions as Bb enters its vulnerable growth phase and then are lysed. For unknown reasons, the worst occurs at the fourth week of treatment. Observation suggest that the more severe this reaction, the higher the germ load, and the more ill the patient."
So, keep us posted, OK?
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
CherylSue, I don't want to hijack this thread, but I will say that it looks like to me that Igenex does not test for mycoplasma. I looked at their test request form and did not see it on there. Here is the form:
You could call them to be sure. If you want to know a good lab for this test, why not start a new post and get people to reply?
Regarding babs, night sweats and high fevers are babesiosis symptoms, alright. Lyme can cause a number of the other symptoms you mentioned. There is a lot of overlap. But, night sweats are a hallmark of babesiosis, as I understand it.
So, it is very likely that 3030 has babesiosis statistically, AND based on the symptoms he described.
Why not review the lyme and coinfection symptom list found here:
As you know, the lyme antibiotics will not get rid of babesiosis. It takes other meds to kill that one. Good observation and diagnosis!
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I'm sorry about the date being a typo, I fixed it. Here's a timeline rundown of what's happened so far. It's mostly from memory, but I also have the dates on the prescription bottles and doctors reciepts, I think I got it's pretty accurate
One thing I should note is that since I have no health insurance I went to a local walk-in urgent care .. They're not bad and they work with me financially but the downside is that I saw a different doctor every time I went in (they of course all had access to information about my prior visits)
Friday, June 19th: First symptoms, felt like I was coming down with a fever.
Sunday June 21st: At this point I'm really sick, high fever, chills. In bed all day for the most part.
Monday June 22nd: I go to the doctor, who tests me for the flu. My flu test comes back negative, my blood tests reveal low white blood cell and platelet counts. The doctor gives me Tami flu saying "you don't have the flu, but this is an antiviral, it may help" I take one, immediately throw it up, and stop taking them.
Wednesday June 24th: I'm still really sick, sweating at night to the point where I have to flip my mattress, and I noticed a red rash on the backside of my right knee, I figured at this point it was just a bed sore or something.
Thursday June 25th: I feel a little bit better in the morning, but in the evening my fever flares to 104.3, so I return to the doctor. He tells me I'm just fighting off the virus, but he prescribes a 10-day regimen of ciprofloxacin just in case.
Friday June 26th: I wake up to find several big red spots on my body (note: I have not yet taken the antibiotic. I planned to start it that morning) I have 2 small ones on my face, a few on my legs, one on my check, neck, and 2 identical elliptical ones on my right bicep. I start the cypro this day.
Over the next week I begin to feel much better, to the point where I feel totally fine. On July 5th I finish the cypro, still feeling great.
Fast forward a week and half, sometime around July 16,17,18:I start to feel slightly fatigued, I'm still totally able to work, but it's a strange very specific fatigue feeling that I've never known before, except when I had the flu symptoms. This time it isn't accompanied by any other symptoms, it comes in seemingly random waves and I can almost shrug it off as stress or something. This goes on for about 3 weeks, the fatigue becomes slightly worse, but I'm not getting ANY other symptoms, no joint pain, nothing. I'm mostly concerned because it's not going away, I can also see some lack of stamina, running etc.
Saturday August 1st: I return to the doctor, partially because they requested a follow up blood test (since I had the low platelet count back in June) and partially because of this funny fatigue I've been having for the past 3 weeks. He orders tests for mono, strep, liver function, and I suggest adding Lyme. He also prescribes me amoxicillin.
I get home after picking up the prescription and take the first pill of the amox. Within a short amount of time (I can't remember but I know it was within a few hours) the tingly fatigue gets worse and I start to get chills and a fever breaks out, about 100.5 to 101. The fever goes away before the night is over, and over the next 6 days I begin to feel much much much better, the fatigue disappears totally.
Friday August 7th: I'm feeling fine, just a few days from being done with my course of amox when my doctors office calls. They tell me that every one of my other tests came back normal, but my Lyme titer has come back positive (and that I have a pretty high antibody level). They suggest I come in that day for an EKG and so they can get my started on doxy. I go in, they give me the EKG, which reads normal. They also order me a western blot test using the blood they had already taken a week earlier, and give me the script for the doxy.
I skip my second dose of the amox that day and start the doxy the next morning. The doxy tore up my stomach/intestines for the first few days so I started taking it with food. Overall I've felt fine the whole time with the exception of fatigue that comes and goes, I never felt on the amox.
So here I am, 11 days into doxy, feeling pretty good. I don't have the money to make multiple visits to an LLMD. I want to get tested for co-infections and I ordered the test kit from igenex. But I don't think the walk-in wants anything to do with it.
I'm kind of stuck on what to do, but I want to figure out before my doxy runs out in about 2 weeks.
Posts: 339 | From Outer Space | Registered: Aug 2009
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posted
Some walk-in clinics and doctors offices use Quest Diagnostics (since you believe they will not go for Igenex). My LLMD tested through Quest. You are already testing positive for Lyme. The co-infections to test for are:
Babesia Microti Babesia WA-1 (I tested postive for this and I live on east cost) Ehrlichia Rocky Mounted Spotted fever
Your doctor can look up the codes depending on the lab location:
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Besides the diseases MorningSong named above, you need to test for Bartonella.
Posts: 9931 | From Maryland | Registered: Dec 2007
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