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update on my symptoms after antibiotics.
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This forum is for questions and support regarding What Causes Lyme Disease, Diagnosing Lyme Disease, and Joint Pain. Topics for discussion also include Living with Lyme Disease, Babesia, Bartonella, Rocky Mountain Spotted Fever, Anaplasmosis, other Tick Borne Diseases, Nervous System issues, Prevention, Risk Factors, Skin Disorders, Symptoms and Treatments

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update on my symptoms after antibiotics.

Hi guys, after a looong journey of a search of a diagnosis... apparently lyme disease was one of the options. Very briefly my symptoms varied in range and were not specific. Started suddenly on july 2008 with feeling lightheaded, pain behind eyes, dizzy, fatigue, photophobia, brain fog, short term memory problems, eye floaters, neck and back contractures,..later burning sensations throughout my body, muscle twitching, etc... for 3 years doctors could not come with a diagnosis because all my tests, exams, MRIs, evoked potentials, etc were NORMAL. (wanted to say that my symptoms seem to come and go, 5 weeks ON/ feeling really bad, and a few weeks with diminished intensity). Some hypthesized migrains, multiple sclerosis, stress, etc... i have seen tons of MDs, neurologists, you name it.. after reading about a possible diagnosis i came to the lyme disease issue and decided to get tested by IgeneX. According to the lab i was positive for Lyme disease (western blot), but negative according to CDC. Later I decided to get tested for coinfections and came out Bartonella positive (menaing i have had the bacteria). My LDMD doctor gave me an antiviral drug to lower the HHV6 virus, which came out high in a blood test, but since after it went down to a normal range i still felt bad, decided to give me antibiotics for Lyme.  I started on doxycycline this february, in a period where my symptoms were not so bad, and until July i had the best period of time since my symptoms started (not completely symptom-free but  very manageable, almost normal!!!!)... now after 1 month of being off the antibiotics and after a month of stress at work, i notice a relapse of (a few) symptoms like photophobia, dizzyness, eyes feeling swollen, feeling off balance.. I am restarting the treatment and this time im adding smething new, cat's claw tea to see if it helps at all. Anyway, what do you guys think? is this normal? do the more educated ones feel this is lyme even though my results are not positive according to CDC?... if anyone on antibiotics experienced this please let me know.
20 Comments Post a Comment
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1763947_tn?1334058919
We all follow the results from IgenX , if you have Bart's like I do, it is a different antibiotic like levaquin and takes a long time to go away, that is why your symptoms came back. A good LLMD should know this. Doxy is good for killing Lyme.
I actually had to go off of levaquin because it caused me to have tendinitis. Not everyone gets that but I did. Is there another LLMD you could try or would your current one treat you for Bart's like IgenX confirmed as well as your neurological symptoms show?
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Avatar_f_tn
If IGeneX says you are positive for Lyme and you have symptoms consistent with Lyme, you can be very confident that you indeed have it.  There are plenty of people who are both CDC and IGeneX negative who have it. Lyme is immunosuppressive, so a lack of antibodies does not exclude Lyme, especially late stage Lyme.

I am another example of someone who tested IGeneX positive (for Lyme & Bart), yet CDC negative. The CDC test interpretation was not developed to be a diagnostic absolute, it was developed for surveillance purposes, that is, to capture a SAMPLE of cases and watch trends. How it became a requirement for diagnosis I do not know, but it was widely criticized by doctors familiar with Lyme.  You can Google "Tom Grier Lyme testing" or look on www.drjoneskids.com and click on Testing to read more about how ridiculous the test interpretation is.

Are you doubting the diagnosis because symptoms are now returning?  You are learning first hand about the conflict in the medical community.  The "official" position is that a month or so of antibiotics always cures it. But there are legions of people out there still suffering who are a testament to the pride and arrogance of the doctors who don't listen and continue to insist they are "cured.".

A few months of doxy is unlikely to cure a 4 year Lyme and Bartonella infection. If that is all your doctor has done, then he is not a real LLMD Who follows ILADS protocols. I had the same two infections for 6 years when I was finally diagnosed and my well known LLMD estimated my treatment at 15 months, assuming no complications or additional infections.  Well, I have already had one complication of overburdened kidneys, forcing me off antibiotics for the last 7+ weeks, so I can add at leat a couple mor emonths to my expected treatment.

Your symptoms are very consistent with a Lyme infection, and Bartonella can complicate things. Bart is not cured by doxy when you have had it a long time.  Drugs of choice for Bart are Rifampin, Levaquin, and a few others if these two don't work well or you can't tolerate them well.

I strongly encourage you to contact ILADS and ask for a referral in your area.  Check out local Lyme support groups, as they often know who is good and who is not. Not all docs who claim to be LLMDs really know that they are doing.

Please keep us posted!  We want you to get better!
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Avatar_f_tn
Sorry! I didn't realize you are in Argentina! Do you think you got Lyme and Bartonella there, or in another country.  I have heard there are a few pockets of Lyme in South America, but very few people know about it.

The lymebook.com site reports
"Chile, Brazil, Argentina, Costa Rica, and other countries have reported isolated, although increasing, incidences of the Lyme Disease infection."

Since these countries are more developed than others, I would guess that Lyme is also present in other countries, the poor patients have just gone undiagnosed as no one recognizes the disease and so it doesn't get reported.

I also recall reading some cases have been reported in Columbia.

My LLMD will provide treatment via phone consultations if you have a local doctor willing to write the prescriptions and order the tests.  Do you have a local doctor that would be willing to do this?  It would certainly save on travel costs for you!
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Avatar_m_tn
Hey! thanks for posting! it was very helpful. I live in Argentina, but all my symptoms started when i was living in Texas 4 yearsa go. Here this disease is not at all taken into account and doctors do not know anything about it, it is very rare. I have seen an LLMD in Texas, and i am communicating with her via email when things get complicated. I will see a doctor tomorrow to ask about Bartonella, which at least that disease (bartonellosis) is known...i have read @ FDA drug web page that doxy does have an impact on Bartonella... even though it might not be the best antibiotic for it. How do I know what the symtpoms for bartonella are? I have done a little research online and they do not match mine... mine are strongly related to the ones i read about Lyme! Well hope to hear from you guys.
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Avatar_m_tn
One thing that makes me think is that while on doxycycline (the last 2 months) i felt i was pretty normal... i had a few symptoms but were mild... so this rises my question about having or not bartonella at the moment
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Since you are not in the US, I am not sure about the co-infections but as Rico says too, doxy does not cure Bart's and if symptoms are returning you are not cured. Where in Texas were you? I had the unlucky pleasure of being in San Antonio where there are no LLMD.
A doctor in Houston who has Lyme himself alled me with this joke" what is worse than having Lyme disease? ....Having Lyme in San Antonio."
We met on a Texas message board and he actually saved my life with his advice.
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Avatar_f_tn
Bartonella symptoms are very variable, and different in each person.  It was s good thing I tested positive, as the only significant Bartonella symptom I had was anxiety, and that could have been attributed to Lyme. It, too, can come back after you think it is gone. It is good to treat it past when you think it is gone for this reason.

I posted a Bartonella symptom checklist on this forum recently.  You can scroll down to find it or search for it.  You can also Google "Bartonella checklist" for Dr. James Schaller's checklist of symptoms.

Lyme and Bartonella are not like most other infections where some symptoms linger after treatment and then go away.  With these two, you have to continue to treat for up tp 8 weeks after symptoms are cleared up to make sure you got the last of it.  Otherwise, a few months or even more than a year later, you are sick again.
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My friend sees Dr Schaller here in Fl. I was able to email him and honestly I found him to be very bizarre in person. He sent me his free book on Bart's and babs and after reading it halfway through, if I didn't know better, I would throw myself off a building because he basically said there is no hope and then he sends me his price list and said you get what you pay for. Meaning, come see me, for all this money and you won't die.
I am following what he tells my friend for free. It annoyed me because I think he is taking advantage of those with no money who have a TBD.
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Avatar_f_tn
Interesting.... You are the second person I have heard that from. I saw a similar post on another forum. It is very unfortunate, as too few people are studying these diseases. When a knowledgeable person is unprofessional, it casts doubt on their research and publications, even if it is useful.

While he may have seen dire symptoms in some patients, most patients don't have such severe cases. It sounds like he assumes the worst. However, he has seen a lot and has a broad understanding.  It sounds like he is not a doctor I would want to see, but someone whose publications can be useful in the absence of more scientific research.

There is an old post on the LymeMD's blog where he says that the CCD admits (in 2009) that they had never studied the combinations of tick borne diseases.  In fact, Lyme, Bartonella, and Babesia are all studied individually by three different departments. Our taxpayer dollars at work on our behalf!  I would guess that scientists like rigorous controls and clear definitions, whereas combinations of diseases are messy and complicated, not lending themselves to clear studies and conclusions.

The best up-to-date information probably comes from the practicing ILADS docs who share what they've learned with their peers at conferences.
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That is interesting. He doesn't know I am friends with someone in his practice, he may be good at research but I wouldn't want to see him either.
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Avatar_f_tn
I took doxy for one month, June. i felt good for 3 days, thought that i was on the road to recovery and then right back to where i was, really bad.pain in every part of my body.

started ceftin and plaquinel 2 weeks ago and feel like sooooooo much better.

my joint pain is almost gone after a year of mis diagnoses and suffering!

i guess different antibiotics work on the different bugs!
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Yes, there are different abx to try and different ones for co-infections.
Remember, 1 month of treatment is not enough. They went into hiding and then reared their ugly heads again. Try to stay on them 8 weeks after feeling better so this doesn't happen again. In addition, some of us had cyclical reactions at the start of treatment. I was on doxy for a year but my bad symptoms would come back every month like clockwork. Now, not so much, plus I am now on meds for Bart's and babs.
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Avatar_f_tn
well i over did it because i was feeling so well. Today my wrists and elbows and knees and ankles hurt a lot and i had lots of fatigue.  to tired to cook. going up and down the stairs (short flight to the bedroom)
painful. day of rest. finally later around 5 pm i decided to take someting for the pain and anxiety. I was getting upset again. I had 4 really good days in a row!
so long as i do not push it perhaps i wouldn't have been laying low all day!
duh!

and i cannot believe how many of our stories about Dr.'s and mis diagnoses and the pain and suffering and worry that thousands are going through.

makes me mad. my own case and every one on all the lyme forums.
thankfully we have the internet to learn quickly and communicate and help each other.

be well!
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I know how painful that can be. I have been to tons of chiropractors but the one I see now I actually get some relief from. She helps the wrist, elbow, shoulder, neck, back pain. Have you thought of trying one or a physical therapist?
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Hi everyone.
I was under the impression that most serological tests are not sensitive enough to detect bartonella consistently, so only clinical dx is confirmatory.
My friend is taking streptomycin with penicillin at the same time, I believe.
Some side effects, nothing serious, but no noticeable improvement either.
These pathogens are nasty! If the treatment choice was left up to me I would get a Rife Zapper and ZAP those pesty micro-organisms out of existence for ever!

I think the action of the drugs in most cases is bacteriostatic, as the bactericidal activity -even if referred to as bactericidal- is probably under ideal conditions. And that would be rare, considering the overall health state of the sufferer. The longer treatment, makes sense, as it allows the immune system enough time, as the bartonella (or any co-infecting pathogen along with Bb for this matter) remains static, to figure out what is going on and get on with the detection and elimination, AS LONG AS IT IS STRONG ENOUGH!
The key to any successful recovery, following proper dx, appropriate  treatment and drug selection, is at the end of the day a strong immune system.
The ultimate strategy would be to verify and/or restore the integrity of the main components of the immune system, concurrently with the LD and co-infections treatment, where and when it is safe and possible to do so.
Antibodies, Bone marrow, Complement system, Hormones,
Lymph system, Spleen, Thymus, White blood cells. The works!
And this should include the general immune boosting approaches, as well.
Any thoughts?
Cheers!
Niko





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Avatar_f_tn
Have you used Rife?  If so, please give us your thoughts.  I don't think we've (ever?) had a Rifer here.
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I have heard from someone who got one that it does nothing so she bought a sauna and that helped.
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My igeneX test for Bart's was positive and I was on Doxy at the time. I had very severe Bart's neurological problems.
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1530171_tn?1362547225
I have been Rife curious for some time.
Since I have seen excellent results with Energy medicine,
(I have experienced some out of this world stuff!) and Rife is frequency
based therapy,I recently joined a Rife Group to find out more, before I take the plunge.
The Rifers claim a high cure rate for most serious and persistent conditions,however, there are a lot of subtle details that do determine the effectiveness from what I understand.
Operating under the radar, for obvious reasons,makes matters more complicated, as I have to rely mainly on other users testimonies, since NO medical claims can be made officially, not even by a company that sells the plans to make your own machine.
I will let you know as I get more info together.
Cheers!
Niko
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I heard a terrible story from my Chiropractor who had a Lyme patient who used it with disastrous results because she believed so much in it. I have yet to hear from a patient who likes it. My LLMD says she has several patients who have had luck. It will be nice to hear what you get from the group.
Thanks!
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