posted
I am treating for lyme disease and I have been treating for more than a week now with no reaction at all. No herxing. My symptoms are the same. Eye pain (main symptom), muscle pain, headaches, dizziness... etc. I was expecting my symptoms to get worse, so I know for sure I have lyme disease. I am paying $1400 a month for doctor appointments, supplements, and antibiotics. I am literally broke with no job. If this is not lyme disease, I don't want to continue into going into poverty. I honestly wish it's lyme disease, so I know that i am not wasting my money on putting chemicals into my body for no reason.
Ideas?
Posts: 56 | From California | Registered: Aug 2010
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posted
To be honest, I usually had a 'window' of feeling at least a little bit better on any antibiotic I tried that was working, before any 'herx'...never symptom-free though. So I never really agreed that feeling lousier on antibiotics meant that they were working. A few antibiotics just weren't the right ones for me.
And are you 'just' treating Lyme? Any antibiotics for bartonella yet? I really didn't feel much improvement at all until bart was targeted, and I'm still not doing too well even after all that...even had some seizures over the weekend.
I understand where you're coming from though...I'm on disability and am broke, too. Some of my symptoms remain untouched by antibiotics, so I wonder myself sometimes if there might be another bug out there yet-to-be-discovered...
-------------------- Urge Congress on EMF Safety, FCC Must Change Exposure Guidelines for Microwave Radiation Exposure: http://tinyurl.com/2cjq54y Halt Universal Broadband, A Public Health Hazard: http://tinyurl.com/3x7xrmq Posts: 495 | From USA | Registered: Mar 2010
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posted
I agree that one week is not nearly enough time to gauge anything.
You should be able to find a much more reasonably priced doctor thought this forum.
I too shared this worry, after a few months without improvement.
I had extensive testing to rule out pretty much any other cause. Lyme is tough and slow. Get a lyme test, and get any other possible cause ruled out as well.
Posts: 339 | From Outer Space | Registered: Aug 2009
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posted
I tested positive for lyme disease with four positive bands. For co infections, on the other hand, were ALL negative.
Posts: 56 | From California | Registered: Aug 2010
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onbam
Unregistered
posted
Sometimes there are just a few specific drugs that work. I've been in treatment for 3 years, never herxed, and only responded to 2 combos.
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I started with Minocycline and Azithromycin. I had no major herxes.
I'm finding many are being treated with low-dose therapies to reduce the harsh effects of herxing on the body. It was our plan to start with low-dose, and add in agents that would combat the co-infections at higher doses after I had reduced the load of Lyme in my body.
I did have reactions to Bactrim DS, Rifampin, and Flagyl. These are generally much tougher to tolerate; although some cannot tolerate Minocycline either. This is all my personal experience talking.
Jess, I understand your feeling stressed and uncertain about your symptoms, and it does take a little while to understand what's working. I'm sure we all wish this would be gone in 1 week, but that just isn't the case.
I recommend setting a realistic goal to change your entire lifestyle to benefit your health and eradication of Lyme. I personally dedicated 2010 to regaining my lost health (which had been noticeably declining for over 5 years). That including quitting drinking and starting a mold elimination diet.
Anyways, I say... Stick it out for a little while longer, and keep doing research. Document what's happening so you can go back and evaluate what is and isn't working for you.
I wish you the best.
Posts: 829 | From MD | Registered: Dec 2009
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posted
Wolfed out, Thank you. And those are good plans for the new year. I wish you all the luck and best of health. The other antibiotic I am on is Cefdinir. How long does it usually take for someone to herx? My symptoms did not change at all. I know I am probably in a rush to see something get better or worse. But I cannot help it.
Thank you.
Posts: 56 | From California | Registered: Aug 2010
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How long have you been sick and/or having symptoms? Did you get tested for co-infections? What are you positive for?
Nothing is linear when it comes to treating this disease. The problem lies in the fact that most of us are dealing with multiple infections of different origins. It's unlikely, but not improbable, to find immediate relief when starting your protocol.
And everyone handles medications different. Like, many people complain of severe herxing with Rifampin (which targets Bartonella). I personally had minimal herxing on Rifampin. It was basically extra fatigue for me, and feeling flu-like.
Again, I didn't herx on Minocycline or Azithromycin. If I did, I was already too sick to notice the difference.
My gut says you'll know when you're herxing. But, just because you're not herxing immediately doesn't mean your not working toward the ultimate goal. Like I said above, your therapy could be geared toward taking a low-dose to keep the herxing to a minimum.
I'd assume if you're shelling out this kind of money for a doctor that he's pretty versed in treating Lyme. I would trust in his plan, as you have invested your money.
For peace of mind, I was saying the same things when I started. I was very concerned with starting in the wrong direction, but with patience things have been coming together. Try to focus on the things that are improving, and keep moving in that direction. I'm finding this disease gets chipped away one piece at a time.
Posts: 829 | From MD | Registered: Dec 2009
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posted
I, too, like you wonder at times what if it isn't Lyme. Though I tested positive on WB for some bands. I have been on a low dose of Zithromax for 21 days now and I don't feel any difference-worse or better. I, too, was waiting for the herx.
I know some say my dose is too low, but my LLMD's plan is to go low and slow, which I fully agree.
He has now switched my abx to Clindamycin, Lumbrokinase, Banderol and Samento once I finish the Zith.
Luckily, I was able to find a dr. who does take my insurance and my copay is only $30 a visit.
I certainly feel your pain in regards to the medical expenses. If I did not find this dr. I would not be treated-I couldn't afford it.
The supplements/herbs/vitamins and special diet are depleting my checking account without the medical expenses.
I know the money part is overwhelming, but I think it's too soon to tell if it's working or not. I'd stick it out for several months at least.
Posts: 412 | From Virginia | Registered: Sep 2010
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
@jessrunner, 4 positive bands? Wow! The CDC would say "not lyme" as they require 5 positive bands. But come on. Logical thinking should reject such foolishness. Igenex only requires 3 positive bands.
I was going to suggest you seek a second opinion from another lyme literate doctor (you waste your time on any other kind of doctor) but with 4 positive bands, I wouldn't need further convincing.
All of us respond differently to treatment and the recovery is usually 1 step forward and 2 back. Over time you kind of forget how bad you were against how bad you are now, so please keep a journal. It will really help you when you are herxing to read all of your steps forward.
For treatment to be deemed "working" your progress should be obvious in your journal, albeit slooooow.
1 week is nothing.
Please try to hang in there and as others said "learn about your illness and how you and your doctor can get you well again."
Happy healing!!!
Susan
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Some people don't herx. They just gradually get better. You shouldn't expect to be better in one week. It may take months. But if after months on this combo you do not feel any different then you should try something else.
I would not decide you don't have lyme when you have four positive bands. What you might consider is that you are co-infected with other diseases even though you tested negative.
So the treatment you are taking for lyme could suppress it allowing the other infections to emerge which do not respond to lyme treatment, such as babesia which causes dizziness, fatigue, loss of stamina and eye irritation.
Co-infections taking over are another reason why we get worse. I used to think it was always a herx and when I did not improve I thought it was a side effect of the drug. This lead me to quit abx twice.
These infections are so devious.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
If you had four positive bands... I say Lyme. You can't be a little bit positive for Lyme any more than you can be a little bit pregnant. If you have it, you have it... no matter what the CDC says.
Negative co-inf. tests don't mean anything either. These tests are very unreliable.
I don't know if the combo you are on will cause a herx... if you are still sick - keep treating until you find the answer for your body. You have to give each combo at least 30 days... before you can judge whether it is working or not.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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I wonder the same thing about my wife's treatement, but what I have come up with (even just for myself) is to set aside a budget for a period of time so I don't get panic.
$1400 a month compared to what we spent on her is not much at all, and we are talking about a good insurance on top of what we spent.
Unfortunately it is an expensive journey, and no one knows the destination.
Good luck.
Posts: 822 | From midwest | Registered: Apr 2009
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posted
I guess I should wait at least a month then judge is the treatment is getting anywhere or not. As of now, no change in my symptoms at all. I tested negative for all co infections, and my doctor does not believe that I have any other infections.
Posts: 56 | From California | Registered: Aug 2010
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Jessrunner~ If your main symptom is eye pain, I'd see an ophthalmologist. You do mention a few other...muscle pain, headaches and dizziness, but I would check out your eye thoroughly first...if you haven't already done so.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
I have been to an eye doctor and when I mentioned the eye pain, he ignored it.
Posts: 56 | From California | Registered: Aug 2010
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quote:Originally posted by jessrunner: [QB] I guess I should wait at least a month then judge is the treatment is getting anywhere or not. As of now, no change in my symptoms at all. I tested negative for all co infections, and my doctor does not believe that I have any other infections.
One month is not long enough either. Takes many months to really know.
If it's not lyme, then what IS it?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I'd find a different eye doctor, if the one you went to ignored your eye pain.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
I can't see an eye doctor at the moment. I got no insurance to cover the costs.
Posts: 56 | From California | Registered: Aug 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I would treat for at several mths. to give it a chance.
They effectively built a bioweapon that turns off our immune systems. It can be turned back on--but it can take several months...
New polio vaccine developed by British research team British and U.S. researchers are developing a new virtually risk-...free polio vaccine that
"tricks" the body into triggering its immune system to counteract the polio virus, according to British media reports this week.
They are letting them do this stuff with nary a care of the what if's. When they can tell us which bugs cause MS/ALS/Alzheimers/Autism/Cancers-then I will say they might know what they are doing---until then we work on fixing their screwups....
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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My daughter herxed like crazy on almost everything, and I rarely do.
I'm into month 4 on IV Rocephin with no herx.
Tried Rifampin and herxed like crazy. That's a scary drug.
Herxing, like everything with Lyme is so individualized.
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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posted
I didn't even herx on flagyl! What if I end up with no herxing at all? Does it mean it's not lyme?
Posts: 56 | From California | Registered: Aug 2010
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I did not herx, nor did I improve for the first year and a half of treatment. Then at that point, I started to improve. For the last year I have had gradual improvment. Still have a ways to go though.
1 week is absolutely nothing when it comes to lyme treatment. Give yourself at least a few months and see how you feel then.
Also even though LD is a "clinical diagnosis", if you have not got a positive test result, you can always retest after taking antibiotics for a few months. You might get more positive bands at that point to help prove your diagnosis.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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i know exactly how you feel. long story short, i started feeling "not right" at the end of the summer of 09'. ignored my aches and went on with life. began my last year of college a month later and noticed that it was harder and harder to ignore my worsening symptoms. i ended rushing myself to the hospital one day with major dizziness, feeling like i couldn't breathe, and crazy heart palpitations. doctors said i was dealing with anxiety. right then and there i knew something wasnt right. for the rest of my school year i saw 4 general practitioners, 2 eye doctors, a retina specialist, a therapist, 4 more e.r. visits, a cardiologist, and 3 neurologists. went through almost every test i could imagine only to be told i was psychosomatic. finally in august of this past summer i saw a neurologist who found i 4 positive bands of lyme disease. i found a LLMD and have been receiving a combination of several oral antibiotics for the past 2 months.
i have never had a herx like people have described. i still regularly freak out about having some other medical condition instead/along with my lyme. while i have gained more confidence in my treatment and my doctor, i still find it hard to fully believe that everything i feel can be due to my lyme. at 23 years old, i dont want to be worrying about the possibilities of other diseases on a daily basis.
if you really feel as though you are experiencing things non-lyme related i would suggest you maybe check them out so you feel re-assured because i have found that sometimes thats all that helps. hopefully you have a dr. you feel comfortable with and can believe in. believe in your diagnosis and stay strong. with the symptoms you have, i would strongly believe that lyme is the corporate. best of luck.
(sorry for the rambling message)
Posts: 28 | From NYC | Registered: Sep 2010
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posted
Jessrunner, I have likely had Lyme for at least 11-12 years, and had just been going downhill for so long. Not massive symptoms, but slow decline, including two auto-immune diseases. Saw dozens of doctors, when finally a doctor said emphatically, "You have Lyme." I thought he was nuts, even after researching -- the controversy scared me. Then I got a sinus infection and went to a LLMD for treatment for that. He put me on high dose amoxicillin and after 5 days I had a profound feeling that I was not sick anymore. I did not herx, just felt that something had lifted. After several weeks, my knees started to hurt and other symptoms started to get exacerbated. But at first, no herx, just improvement. It wasn't until I went on a substantial dose of Zithro that I had what I believe was a herx (though not what others have described). For me, I just felt literally toxic, and a little like I was getting a cold -- scratchy throat. But not flu-like symptoms at all. However, after a short break in the Zithro, I felt even better.
So, based on my experience, I'm not sure that a herx is always necessary to say whether the drugs are working or whether the absence of a herx or feeling something different should mean anything in considering whether you have Lyme. I still wonder about my diagnosis since my symptoms were not so severe as others describe, but with my reaction to the antibiotics and 4 positive lines on the Igenex IGG, I cannot say this is all a coincidence. PS -- Achey eyes (with droopy lids) are one of my main symptoms.
-------------------- We really know so little about the body and the microbiome. Posts: 261 | From Southern California | Registered: Jan 2011
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