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not doing well-more symptoms while being treated

i'm having more odd symptoms develop even though im on doxy for early diagnosed lyme.  this weekend, my skin started to become really sensitive.  it started with a small patch on my rib cage, and the next day it was my right thigh, then left thigh, then whole stomach.  there is no redness or rash or anything.  put the lightest touch or brush of something hurts.  the water hitting it in the shower hurt.  a drop of soda that fell on my thigh hurt.

then, this morning, i was walking outside and i felt like it started to rain.  it felt like droplets of water were hitting my hands and arms.  but it wasn't raining at all, and i still felt it inside.  didn't last long, maybe 5-10 min total, but that is not a normal sensation.

i also still have a bad headache.

can this all be lyme related? can it be "post lyme effect"?  i feel like i am going a little crazy with these odd feelings....
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Avatar universal
I think the two terms are used interchangeably, but it's all rather vague.
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1692704 tn?1307211780
Jackie, you really know your stuff. It is very interesting to read all the info in your posts and thank you for taking all the time it must take to do this. I had one question...Is the theory of continuing symptoms after Lyme treatment being autoimmune the same or different from the theory of Post-Lyme Syndrome?
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Avatar universal
I hear you.  Problem is, tho, that abx don't kill all the bacteria in one swipe -- it's a matter of diminishing the population a little more each time, which is why abx work against nonLyme bugs that have 480 reproductive cycles during a few weeks of abx:  attrition thru 480 passes across the battlefield.

In contrast, Lyme reproduces so slowly and is so adept at hiding in the body (in slimy shields, called biofilms, as well as in the nervous system and cartilege, which has very low blood flow and therefore the abx don't penetrate well) that one pass with an antibiotic does not, in the opinion of LLMDs, give effective cure.  That's why LLMDs prescribe not only long term abx, but also cystbusters like Flagyl.

NonLLMDs, in accord with the CDC/IDSA position, hold that if a Lyme patient is not cured after 3 weeks of standard antibiotics, then it was not that the treatment was insufficient, it's that the body has in a few weeks developed an autoimmune reaction to the bacteria, and any continuing symptoms are not Lyme, but the body attacking itself.  I haven't read any research supporting that theory, but if anyone has a link, I'd be glad to see it.  Till then, Occam's Razor says the simplest explanation prevails, and that is that a persisting Lyme infection is due to insufficient treatment.
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Avatar universal
Well, from what I read I believe non-LLMD's treat Lyme with 3 weeks worth of doxycycline because the Lyme bacteria reproduces every four weeks. Give or take, if your lucky you should hit that reproductive cycle with the 3 week antibiotic course. Not everyone is that lucky though, and I think that is why the 3 week antibiotic course fails. To ensure that you at least hit the reproductive cycle once I would think that a doctor should at least prescribe 4 or 5 weeks worth but i'm not medically educated like them so.
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Avatar universal
Here's a fuller explanation of the different approaches in Lyme treatment, and why LLMDs use more than one antibiotic at the same time.  I and others I know were treated for 4 to 6 months with a combination of antibiotics, for the reasons stated below:

From LymeDiseaseResource [dot] com:

"One of the main points to understand about bacteriostatic antibiotics [that is, those that stop bacteria from reproducing but do not kill the bacteria] is that they are usually effective in debilitating bacteria only when bacteria reproduce.

"This is significant for two reasons.

"First, it is believed that dormant Lyme bacteria don’t reproduce, which diminishes bacteriostatic antibiotic’s effectiveness in fighting Lyme disease.

"Second, Lyme bacteria have a long reproductive cycle. A mature Lyme bacterium reproduces once every 7 hours or so. This reproductive cycle may vary from species to species. In comparison, some species of the strep throat bacterium reproduce once every 20 to 30 minutes. It is not known how many reproductive cycles are needed before all Lyme bacteria are debilitated by antibiotics.

"However, according to Karen Vanderhoof-Forschner in her book, “Everything You Need To Know About Lyme Disease”, the strep bacterium is normally treated with antibiotics through 480 reproductive cycles.

"She says that if we were to treat Lyme disease through the same number of cycles it would take somewhere between 5 to 30 months of antibiotic therapy. If this is true, it is significant that some physicians follow a protocol for treating Lyme disease that allows just two to six weeks of antibiotic therapy. Based on the above scenario this may be inadequate.

"If either of the above examples are true, this may mean that physicians who are acting in good faith by using conservative treatment protocols may actually be prolonging and thus complicating Lyme infection in their patients. However, much of this theory is speculative. Obviously, more research is needed.

"Lyme physicians take all of this relatively new knowledge about bacterial biology into account when deciding which antibiotic, or combination of antibiotics to prescribe.

"The above scenario suggests that, depending upon dosage, some classes of antibiotics such as penicillins and cephalosporins may not be able to eradicate Lyme bacteria from the body because they circulate mainly in the body’s fluids and are incapable of entering cells where the Bb organism can reside.

"If true, this contradicts many current conservative antibiotic protocols for Lyme disease.

"The good news is that other classes of antibiotics, such as macrolides (azithromycins such as Zithromax) are prescribed specifically to attack the Bb bacteria that may become established within the body’s cells, along with killing Lyme bacteria residing outside the cells in deep tissue areas of the body.

"It is important to recognize that this is a case in point where a shotgun approach to antibiotic therapy may be an effective tool in fighting Lyme disease.

"For example, a physician may prescribe a penicillin such as Amoxicillin, along with a macrolide such as Zithromax. The Amoxicillin stays mostly in the body’s fluids and blood stream. Meanwhile, Zithromax not only penetrates the cell wall where the Bb organism is residing (and/or hiding), but it also penetrates deep tissue areas, which Lyme bacteria also inhabit. When Lyme bacteria move to deep tissue areas they have effectively moved away from normal blood flow and away from fluid-based antibiotics. Antibiotics such as Zithromax can help to counter this survival tactic.

"Also, Amoxicillin is mainly bactericidal (remember, think… homicidal), which means that it directly kills the Bb organism. Zithromax is a macrolide, which means that it can either be bactericidal or bacteriostatic (think… manipulative) depending upon concentration levels.

"By prescribing these two antibiotics, physicians hope to increase the opportunities for killing as many bacteria as possible, and affecting Lyme bacteria in numerous and complex ways. And of course many doctors disagree on combinations and length of treatment – especially given the potential of significant health hazards and potentially lethal side effects...."
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Avatar universal
I'd suggest, if you are interested, that you read Burrascano's 'Diagnostic Hints and Treatment Guidelines' posted at ilads [dot] org.  It is a rather conversational (tho scientific) discussion of diagnosis and treatment of Lyme and various co-infections.  Including:

"The TETRACYCLINES, including doxycycline and minocycline, are bacteriostatic unless given in high doses. If high blood levels are not attained, treatment failures in early and late disease are common. However, these high doses can be difficult to tolerate.

"For example, ***doxycycline*** can be very effective but only if adequate blood levels are achieved either by high oral doses (300 to 600 mg daily) or by parenteral administration. Kill kinetics indicate that a large spike in blood and tissue levels is more effective than sustained levels, which is why with doxycycline, oral doses of 200 mg bid is more effective than 100 mg qid. Likewise, this is why IV doses of 400 mg once a day is more effective
than any oral regimen."

I'm not medically trained and don't know how this fits with the treatment you and murray are receiving.  Co-infections are a whole separate category, and are often (usually?) treated before treating Lyme.

Lyme is often/usually treated by an LLMD for significantly longer than the 3 weeks you mention, because Lyme, like leprosy (another bacterial disease), has an exceptionally slow reproductive cycle, and it is when reproducing that bacteria are most susceptible to being killed by antibiotics.  That is why LLMDs often treat Lyme for months, not weeks, in order to have high enough levels of abx in the blood during enough reproduction cycles to keeping decimating the remaining bacteria.

NonLLMDs don't tend to address this aspect of Lyme bacteria, and so treatment can fail.  
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Avatar universal
No problem, take it easy and get well. Hope the excedrin works for you, it worked well for me.
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Avatar universal
Hi,

Thanks for your response.  Yes, that's my doxy regimen.  I started June 3rd with IV doxy.  When I left the hospital, I switched to the 100 mg oral pills for 21 days.  So in total, it would be a little more than 21 days.  My follow up appmt is next week, but I'm trying to get in sooner to see if I need more/stronger treatment.  I did herx while I was in the hospital, but thought that part was over.  maybe not?

i will try the excedrin migraine.  i've taken tylenol and motrin and drank caffeine, so I will get that all out of my system before i throw something new in.  
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Avatar universal
Sounds like it's lyme related to me, lyme disease is known to cause skin sensations like "tingly" feelings although i've never read about one like you have. I don't want to scare you - but that sounds like it could also be related to a co-infection you received during the tick bite. However, symptoms can still develop while on doxycycline treatment as i've also had many new symptoms develop while on it. I've also read that antibiotic treatment stirs the bacteria up in your body, which can cause many new symptoms.

Are you on doxycycline 100mg twice daily for 21 days? That's what my doc prescribed me and i'm not sure if that will be enough. I'm still highly considering seeing a dermatologist to convince them into prescribing me doxycycline for acne, as it's the same dosage as i'm taking now just for a longer time to ensure that I kill it off.

As for your headache, as I mentioned before you might want to try Excedrin Migraine. I know you don't actually have a migraine, but it worked great for my Lyme headache and all that is in the pill is tylenol, aspirin, and caffeine which is safe to take with lyme although you want to limit how much caffeine you intake. Try not to consume to much caffeine, and I recommend taking vitamins - they've helped me a ton. I'm on day 11 of my treatment and i'm feeling great besides a little head fog and I still have facial paralysis.

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