Hey folks. I'm a newbie here, looking for some help from others who have gone through this. I was diagnosed with lyme disease in March after a canoe trip- I had been camping in an area full of deer ticks and was lucky enough to have flu symptoms and a rash soon after returning home. I did a week of doxy, had an allergic reaction to it, spent two days off antibiotics (it was Friday, after all) and then went on zithromax for eight days. I thought I was cured- my doctor said I would be anyway. Since I never tested positive for lyme, she figured that meant I was fine.
Not suprisingly, I started feeling sick again in June, and went on zithromax until about two weeks ago. I'm seeing a much better doctor now, who has me also taking herbal supplements and vitamins to help with some of the symtoms. I think I was starting to feel better, although it's hard to tell with this disease. She suggested that when I finished my last refill I should spend a couple months off the antibiotic and see how I do.
As soon as I stopped taking the antibiotic, I started to feel awful- fatigue, headaches, and shooting pains in my arms and legs, just like this summer. It's been about two weeks, and I've noticed that my hips have started hurting and are frequently misaligned. I've been having more pain in my ankles and the soles of my feet; it's getting really difficult to walk long distances and to stay up past nine. I'm a full time undergraduate student, and this is probably the worst time in the semester to get sick again. The thing that I'm confused about is why I'm feeling so awful so quickly. I'm feeling almost as bad as I did in June. I'm allergic to every antibiotic except zithromax, so I can't even try another medication. I don't think the zithromax was working very well, or if it was, only suppressed the symptoms I was having. I'm supposed to see my doctor in December, but I'm considering moving that appointment up by a few weeks if I can. Has anyone else experienced anything like this? I'm very surprised that I'm feeling this bad this soon after coming off the antibiotic, especially since I've only had the disease since March. Thanks very much for the support.
-Hunter
Posted by hillaryb (Member # 10049) on :
I'll keep this brief--you need to see an LLMD (a Lyme-Literate doctor)!! A sporadic week or two of antibiotics is not going to get rid of Lyme. You may also have gotten other tick-borne diseases (co-infections) along with Lyme.
Please start by printing out Dr. Burrascano's "Diagnostic Hints and Treatment Guidelines" at the Ilads website: http://ilads.org/guidelines.html
You need to find a doctor that specializes in Lyme. Most PCPs are uninformed about the complexity of the disease. To find someone near you, go to Support Groups (on the left of your screen). You can also post a note in the Finding a Doctor Thread.
Take care!
p.s. edited to add... I can't believe that you are in MA and your doctor wants you to go off abx for a couple months "to see how you will do" when you clearly are still symptomatic. Yikes! I expect doctors here in California to be clueless about Lyme, but it really shocks me that doctors in Lyme-endemic MA are also uninformed.
Posted by sixgoofykids (Member # 11141) on :
I agree, you have been undertreated. An LLMD will not just arbitrarily take you off abx to "see how you do."
Please find an LLMD and get properly treated. You can have symptoms return that quickly.
Posted by Lymetoo (Member # 743) on :
What kind of "allergic reaction" did you have to doxy? There is a coinfection of Lyme called Ehrlichiosis which needs doxy in order to clear it.
It would not be good if you still have ehrlichiosis!! Nor would it be a good thing to have Lyme still in the picture!
Please go to Seeking a Doctor and ask for help. WE can send you a list of LLMD's so that you are properly tested and treated.
You may have other coinfections which need meds other than zith or doxy.
I think I may look into seeing a specialist. I've been seeing a doctor who specifically deals with chronic illness and chronic pain, but not lyme disease. I was having such awful side effects from the antibiotic that she thought that it might be causing me more harm- I was even having hearing loss and ringing in my ears. So what we both thought was that if I went off it, some of the symptoms we attributed to lyme might also go away because they were actually caused by the antibiotic. Although my first doctor- the one who put me on the doxy- was awful, which probably had something to do with the fact that she works for my school's health services. She had actually never treated or seen lyme disease before, despite having worked in MA for decades, which really worried me.
So I'll definitely check out the lyme specialist suggestion, and that link. Thanks very much for your help!
Posted by write_naked (Member # 13711) on :
Sorry about not responding to anyone else there, I'm still figuring out the way these boards work.
Lymetoo, I had a pretty classic reaction; itching all over my body, rash, trouble breathing. It lasted for a couple of days after I stopped taking the antibiotic. I've had the same reaction to pretty much every other antibiotic except zithromax. Usually when I need one of the others I take steroids at the same time, but that's a really bad idea for lyme disease. Apparently there's an IV treatment of zithromax you can get that I'm considering because it might be stronger.
I've also never tested positive for lyme, but I have tested negative for the other tick bourne illnesses. Are the tests for those diseases as terrible as the Western blot, or are they more accurate?
Thanks again! Hunter
Posted by sixgoofykids (Member # 11141) on :
The testing for coinfections is also poor. I clearly have babesia and bartonella, but tested negative for both. Diagnosis was confirmed by response to treatment.
There is such a thing as a Herxheimer Reaction where your symptoms worsen before they get better. That could be what you were experiencing with the zith ... ears ringing is a common Lyme symptom.
Posted by write_naked (Member # 13711) on :
quote:Originally posted by sixgoofykids: The testing for coinfections is also poor. I clearly have babesia and bartonella, but tested negative for both. Diagnosis was confirmed by response to treatment.
Out of curiosity, what are the symptoms and treatment for those infections? I imagine that since they're bacterial they would involve antibiotics. Do they need different antibiotics than the lyme? Thanks!
Posted by just don (Member # 1129) on :
A naked hunter,,,
Now THERE'S a vision@!!
Welcome aboard,,
Just wondering,,,HOW MUCH zith were you on?? Dosage from a non-literate in lyme doc is about 1/2 or 1/3 of NEEDED dosage?? How much dosage of doxy??
You DO know what a herx is??
Hang in there and get GOOD treatment and advice,,,the advice of taking 2 months off and see,,,really sucks!! About the FIRST sx to come back should have been FIRST clue,,,get BACK on abx any way you can.
HOW do you know for SURE your allergic to all the possible abx's,,,there are a ton of possible combos. Have you tryed mepron with that zith?? How about straight amoxi?? That too allergic??
The burning feet sound like bart to ME,,,but what do I know?? IF you are truely allergic to everything how about IV,,,that too? Allergic JUST since THIS infection of tick bournes?? or your whole life??
You dont need any more 'fuzzy' ducks leading you astray with bad info and treatment,,,go first class THIS time and see what happens!!
Hang in there,,,there are tons of people supporting YOU here!!! Ask questions as they occur in your mind!! READ READ READ!! Lots to learn and so little time!!
Hope your long and bumpy road becomes clear to YOU!!! being--just don--
Posted by Lymetoo (Member # 743) on :
Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
The following signs/symptoms may be present in those infected with Babesiosis: Fatigue Arthralgias Myalgia Drenching sweats Headaches Emotional lability Depression Dark urine Splenomegaly Dizziness Nausea and vomiting Cough Dyspnea Fever Chills Hepatosplenomegaly Jaundice Malaise Shortness of breath Bleeding tendencies, bruising Thrombocytopenia Hemoglobinuria Hyperesthesia Pulmonary edema Encephalopathy Low to normal range leukocyte counts Possible elevated levels of dehydrogenase, bilirubin, transaminase* Anorexia Approximately 25%- 66% of Babesia patients are known to be co-infected with Lyme disease. These symptoms may continue for long periods of time, decrease, then return. A low Babesiosis titer (IgG) often indicates a chronic infection. An acute or current infection may show a higher reading on the IgM test initially. There are over 100 species of Babesia in the United States but only ONE or TWO species are currently checked by commercial labs.
BARTONELLA SYMPTOMS
GENERAL: Fatigue, Restlessness, Combative behavior, Myalgias, Malaise, Liver and/or Spleen involvement, Abdominal pain, Infectious Mononucleosis-like Syndrome, Granulomatous Hepatitis BRAIN: Encephalopathy may occur 1-6 weeks after the initial infection and is fairly common in patients with Bartonella. Note: Approximately 50 percent of patients who develop Encephalopathy can be affected by seizures (from focal to generalized, and from brief and self-limited to status epilepticus). Headaches, Cognitive Dysfunction, and CNS Lesions may be evident. RASH AND LYMPHADENITIS: Erythematous papules (red splotches or slightly raised red spots) may develop. Such papules occasionally occur on the lower limbs but are more common on the upper limbs, the head, and neck. The papules may appear on the skin or mucous membranes. Bartonella may also cause subcutaneous nodules, with some bone involvement possible. The nodules may show some hyperpigmentation, be tender, fester, and/or be enlarged or swollen, but not always.
EYES: Conjunctivitis, Bartonella Neuroretinitis, Loss of Vision, Flame Shaped Hemorrhages, Branch Retinal Artery Occlusion with Vision Loss, Cotton Wool Exudates, Parinaud's Oculoglandular Syndrome, and Papilledema. BONES AND MUSCLES: Osteomyelitis, Myositis, Osteolytic Lesions (softening of bone), Myelitis, Radiculitis, Transverse Myelitis, Arthritis, Chronic Demyelinating Polyneuropathy.
HEART: Endocarditis, Cardiomegaly. Possible lab findings: The following may show up during standard testing: Thrombocytopenia, pancytopenia, anemia, elevated serum alkaline phosphatase level, elevated bilirubin, abnormal liver enzymes. X-ray of the bone may show areas of lysis or poorly-defined areas of cortical destruction with periosteal reaction. Cardiomegaly may show up on a chest X-Ray.
Biopsies of lymph nodes reveal pathology often indistinguishable from sarcoidosis. Reports of biopsies strongly suggestive of lymphoma do occur. Tests occasionally show an enlarged liver with multiple hypodense areas scattered throughout the parenchyma.
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I'll be back later this evening. Posted by sixgoofykids (Member # 11141) on :
My babesia symptoms were night sweats, air hunger, and heart palpitations. Babesia is protozoal, so anti-malarials are used.
Bartonella has various symptoms -- mine were cognitive symptoms that weren't resolving as my Lyme symptoms were improving, and GI symptoms. I also had rashes. These are getting better with treatment, and it does take a different abx than Lyme. I am on Levaquin for it.
Posted by write_naked (Member # 13711) on :
quote:Originally posted by just don: Just wondering,,,HOW MUCH zith were you on?? Dosage from a non-literate in lyme doc is about 1/2 or 1/3 of NEEDED dosage?? How much dosage of doxy??
You DO know what a herx is??
HOW do you know for SURE your allergic to all the possible abx's,,,there are a ton of possible combos. Have you tryed mepron with that zith?? How about straight amoxi?? That too allergic??
I've had lots of sinus infections and bouts with pneumonia and staph infections during my life, and that's when I've learned I was allergic to the antibiotics. I've had reactions to doxy, amox, ceflex, and augmentin, with my first reaction to amoxicillian being when I was 14 and the ceflex and augmentin happening during the same infection. I was also taking steriods at the time, which is supposed to stop allergic reactions from being so severe, and I was still swollen, itchy, and covered in hives. I've never tried or heard of mepron- is it another antibiotic?
I was on a 500 mg dose for zithromax. Not sure how much for the doxy, but I was taking it enough to throw up several times a day before I started allergically reacting to it. I've never been on any IV antibiotics but I'd imagine that I wouldn't be able ot take any in the ceflex, augmentin, amoxicillian or doxycycline families. I'm very familiar with herxheimer reactions and kept a really detailed log of how I was feeling every day. The reason my doctor thought I should go off the antibiotic is that I was having a lot of GI problems, the hearing loss, and the other lyme symptoms- especially the shooting pains and the fatigue- had been absent or very minimal for about a month and a half.
On a lighter note, to further complicate your image of a naked hunter; I'm also a vegetarian. So I guess you can think of a naked hunter stalking spinach and squash?
And lymetoo, thanks so much for the list. That's a lot more comprehensive than I expected. I'm going to look through it more closely tonight and see how pertinent it is.
Just out of interest, does anyone think it's possible to have lyme disease for a while and then be infected again and show more symptoms? It's just that I'm kind of an outdoorsy person and I have been for my whole life, and I was constantly covered in rashes from spider bites and poison ivy as a kid and it's very likely I could have missed any rashes associated with lyme disease. It's just that when I was diagnosed in March I actually had a very clear bulls eye rash, which is unusual for anyone really, but from what I've heard that's definitely an indication of having just been infected. I'm curious because while I was on the zithromax I remember writing down a few weeks ago that I was feeling more clear headed than I had in my entire life, and that it was way easier to concentrate on things. Now it seems like I'm back to feeling foggy, which from what I've heard is a sign that I've had the disease longer. I'm not sure if it actually matters, except in figuring out how aggressive to be with the treatment; I really don't want to build up a resistance to one of the only antibiotics I can take at age 21.
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