Lyme Disease Support Group

I know how tempting that must be, but...What if you had a severe allergic reaction? What if you need advice to know what is an allergic reaction, and what is a herxheimer reaction? There are so many times I've had to call my daughter's LLMD with a variety of questions. Lyme is such a complex disease. There are times when other conditions or diseases might need to be ruled out, tests ordered, etc. Just food for thought.

I hope the name I sent you is helpful.

Thank you. I am seeing my primary doc tomorrow (he rx'd amoxicillin in may and doxycycline just finished) I'm going to lay out my symptoms and tell him I'm contemplating treating myself, maybe he'll give me another prescription/maybe he'll refuse to keep me but nothing to lose really.
I am going to look up your recommendation too. Thank you!
Claire

Another idea would be to see an LLMD, hear what he has to say & have him get you started, then see how you feel about going it on your own along with Primary's help? Before we got into seeing our LLMD, our primary offered to try to treat us, if we couldn't get in to see one. (reminds me of the time I was asked to teach technical drawing- no other teacher close to capable, so I took the class at the Jr. College at night, and in the day I taught it to high schoolers! It did work OK, but did not carry the same risk...)

I feel like I know the basics about what antibiotics to take, for what infection and for how long, but still something can go wrong. The co-infections are the trickiest, I think, also the tests so faulty, so the clinical diagnosis is of utmost importance. My second round of antibiotics (for presumed babesia), Mepron & Claricmycin, really made me VERY sick. Had to back off. LLMD thought it was a major herx & was so overwhelming that my body just couldn't handle it- he worried I'd blow out my gall bladder. So, he's rehabbing my innards right now and I'm only taking artimisinun (sp) for a bit, before another try with antibiotics in a month. Maybe a lesser dose? Another med? Those are the types of things that are not straight-forward.

Do you have to worry about the quality of meds if you buy over the internet?

I would be scared to just for the fact that if you give yourself the wrong antibiotic you can make yourself very ill. I had a fibro doctor give me meds because he was mad that I told him it was Lymes and not EBV. When I did go to my LLMD and asked him what would have happened if I would have taken them he said that I would have been in the hospital very ill.
Also when you buy druga online you can not know weather thay are the real thing or not. 60 minutes did a survey about online drugs and only like 2 of the products out of 10 were actually what they said they were.
I know it is hard but a LLMD is really the best thing you can do to get better.

I think this *not* an unreasonable idea. Sure, you could have a bad reaction to an abx, but you could have one to an over-the-counter med or even to an unfamiliar food. I thought I was having a problem with doxy. Turns out I had pancreatitis and had to be hospitalized. A LLMD would have probably told me I was "herxing" (yippie!) I'm glad I wasn't seeing one then.

Bad abx over the internet? Maybe, but I doubt it. Why screw with something so boring? It's not a Schedule II or III drug.

When I went to see my LLMD, she charged $300 for an initial consult (half that for future visits). I thought that was high. Now people are saying $600 and more for first visits. That's absurd. Are LLMDs charging these fees to prove how special they are? Or to keep the everything-in-my-life-is-caused-by-Lyme'rs away. Or just because they CAN? Don't know, but it's grounds to reject them in my book.

ALL I want is a thoughtful prescription for antibiotics. My LLMD gave me a six-month prescription for abx, thank you! The Burrascano guidelines enable you to do the thinking. If the internet can take you the rest of the way, why not? If you're smart enough to do that, then if you need a blood test run you should be smart enough to get a doctor covered by insurance to do it for you.

You can stop reading here because there rest is besides the point but I've been needing to say it. I get the impression that LLMDs often "prescribe" treatments they are fairly sure will have no real effect on Lyme itself, just to justify their ongoing "care". Same goes for this ongoing fascination with herxing as proof of healing. I have seen no proof that people who herx are sicker or are healing more than people who don't. Yet it seems like half the stories here are about herxing!

I don't know that Lyme is that "complex" except that the bacteria are more adaptable than most. I think some LLMDs encourage people to throw all their symptoms into the Lyme basket, and if they run out of room, they give them a new basket called "co-infection". I do NOT deny Lyme or coinfections or the serious (chronic) pain and suffering they can cause, but I fear people are neglecting other conditions in their lives (diabetes and stress, for example) because they are used to attributing everything to Lyme.

The other downside to LLMDs is that people stop trusting/going to "other" doctors. I can imagine someone getting a lump in their breast and running to their LLMD, wondering if it's an asymptomatic tick-bite! If you've even called your LLMD for advice more than once between appointments, you might want to think about what's really going on, and why you don't feel comfortable addressing your primary care physician about these complaints.

Thanks for letting me vent. To summarize, I think given some of the other wacky and expensive things we do in search for a cure here, getting some pills over the internet seems relatively sensible to me.

-fm

I'll pay anything or do just about anything to get this out of me and stop hurting. I would love to feel normal again. And have some quality life before I leave this place. I'm still young enough to enjoy life if lyme would let me. My whole Lyme treatment has been out of pocket on a $375.00 wkly income for a family of three. Thak God for Angles !!!

My primary this morning prescribed Effexor for 'lyme induced depression.'
No antibiotics....I'm at a loss. He does want to hear back from me next week and yes I am depressed and crying all the time so maybe it would be a good idea to take them and see what physical symptoms are left?
I've heard of another primary about 70 miles from me who will take my insurance and has a lyme blog. He seems very knowledgeable but is currently off on medical leave. I may go with my current docs treatment, call far away lyme doc next week and if both fail will hit the internet drugstores.
For those more experienced than I, does this seem like a good plan?
(thanks all for your input)

I'd be wary of anti-depressants, but that's the way I am. I don't like "band aide" fixes.

Have you been tested for Lyme and coinfections, and are you positive?

70 miles is not so far to go. Why not make an appt? Maybe you can get in soon. Canceling is always an option.

A consideration- if you start this med, it may muddy the waters later for making a correct diagnosis. Remember, some symptoms of Lyme and coinfections are neurological & mistaken for depression, etc.

I know that for ME, after the 3 months of Septra and Rifampin, my feelings of anxiousness and sadness almost completely disappeared. My horrible headaches completely disappeared.

Some people theorize that there is an as of yet undiscovered "bug" related to Lyme, and that is being killed with extensive antibiotic treatment. I don't know.

RE: herxing. My LLMD believes it hurts your situation more than helps when herxing is extreme. This is an area where experience comes into play. Also, diagnosing the coinfections.

My advice: if you possibly can, see the doctor 70 miles away, get his/her opinions, weigh your options and treat yourself only if you feel capable and feel it's your best/only choice.

I don't envy you having little ones to care for during this, but mothers seem to always find a way! Check in with us and let us know how you're doing! Good luck!

Thanks for your input. I am not going to take an antidepressant! I was almost convinced but then I'm easily confused/persuaded these days.
I have a positive Lyme test, I had western blot in June and repeat in Aug showed increase in antibodies.
I am seeing my 'old' primary doc tomorrow who moved to another practice about 30 miles from my job so it's somewhat feasible. If she can't help, far away doc will be my next step.
I think I am depressed AND I have Lyme but I'd rather treat the physical first and see what's left. I kind of think that if I can walk without pain and have the energy to put my kids to bed I might not be so miserable!!
Thanks again...
C

Hi claired4,
I am also an experienced RN, was diagnosed with Lyme 3 years ago and have done TONS of research on this. Until a year ago I amy have told you to go for it however, I developed 2 coinfections which completely changed and complicated my treatment plan. Had I treated myself, I may have missed the coinfections since symptoms merge..This is a complicated disease that require expertise. if you can find a regular doc who accepts insurance but is willing to advise with a LLMD, I encourage you to maintain care with an MD.