Just How Complex Lyme Disease Really Is

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June 27, 2011

Getting Rid of Lyme

Guest post by Doug M, New York State.

Lyme disease continues to amaze me with its astonishingly varied and complex combinations of symptoms. Perhaps it might be helpful if I described my own journey.

I first complained to my doctor in 1988 about shoulder pain. “Bursitis” he said, and wrote it in my record as a “complaint.” Over the next few years I complained of swollen neck and throat glands, sore throats, one-sided headaches, all of which lasted from a few hours to a few days. “Coxsackie Fever,” he pronounced once, but denied saying later. Back and rib pain, a knee that swelled up overnight, sores on tooth margins, tinnitus. What a menagerie of complaints! A frustrating aspect of these complaints was that they kept moving around — head to neck to ribs to back to hip and back up the to the head again. Multiple CDC ELISA and Western Blot Lyme tests allegedly showed that I was negative for Lyme, though in retrospect I think that was the lab’s skewed interpretations that the doc believed unquestioningly.

Stir into my symptom mix sensitivity to light, random muscle spasms, day and night sweats, foot pain, and increased eye floaters. I did try another doctor, who lectured me on the unlikely possibility of having Lyme. Finally in 2002 I went to an LLMD who catalogued my symptoms, repeated the tests at a more competent lab, and ruled out other diseases that Lyme mimics. “Lyme,” she eventually announced, with possible Bartonella. Fortunately for me my Lyme disease symptoms, compared to others in her waiting room, were relatively mild, not disabling but very annoying. What sent me into treatment was the prospect of these symptoms getting progressively worse and irreversible — a possibility, not a probability. But still.

Since 2002 I’ve had four courses of antibiotic treatment, one lasting only a few weeks, another lasting a year and a half. I’ve had a total of 330 daily IVs, some just Rocephin, some with Zithromax as well. I’ve used eleven different antibiotics over these nine years. I’ve also been “drug free” for as long as two years in between. The symptoms can be beaten back; I’ve enjoyed significant relief for months at a time. Complicating things now, though, are complaints that have as much to do with aging (herniated discs, arthritis) since I’m now Medicare eligible.

Over the years my Lyme-literate doctor has developed a construct as to which symptoms, in which combinations, signify Lyme, which suggest Bartonella, Ehrlichia or Babesia, and which antibiotics or combinations of antibiotics might be effective for each individual patient. She also carefully monitors my liver function and other parameters on a bi-weekly basis. Our doctor-patient relationship seems to be working quite well, to the benefit of my health and well-being.

While I may never be completely symptom free, at least I know that I can deal with the symptoms when they return and beat them back when I need to. Lyme disease is such a complicated illness, but it is manageable if you have a doctor who knows how to tackle it over the long term.

For an excellent book on diagnosing and treating Lyme disease within one family, I highly recommend Cure Unknown: Inside the Lyme Epidemicby Pam Weintraub. It’s written like a detective novel as well as a documentary expose.

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306 Responses to “Just How Complex Lyme Disease Really Is”

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  1. AJ Says:

    I got bit in 1995 and wasn’t diagnosed until 2009. Lyme and Bartonella. I was on antibiotics for 3 years. Sometimes as many as five of them. I got off of antibiotics about 6 months ago and I am getting infusions of Hizentra. Do you know anybody that has successfully overcome Lyme with this kind of treatment? It is very expensive.

    Reply

    • Pam Dodd Says:

      AJ, I don’t know about Hizentra. No one in my large network of Lyme friends has ever mentioned it. What is it? Who’s prescribing if for you, a Lyme-literate Md or ND?

      Reply

  2. fitgirl Says:

    Hello! I live in Houston TX and I was just diagnosed a few weeks ago with Lyme. I was fortunate enough to find a doctor here that took me seriously and did the test. However, I believe I have had it for about 16 years now. Unfortunately, I was misdiagnosed with depression which includes a lot of the same symptoms as Lyme. Now we are waiting on more test to see the big picture so my doc will know how to treat me. He is actually a orthomolecular physician and says that he has cured people with Lyme. I pray that I am on the right path because my entire life has been a battle mentally and physically. He believes that I have a major accumulation of mercury since that’s what happens when you have Lyme and he plans to detoxify my body with chelation therapy. After ridding me of the mercury, the next step will be killing the overgrowth of yeast. Then, he plans on prescribing antibiotics to combat the Lyme and other coinfections that I may have.

    I have been reading nonstop to learn everything I can about this mysterious disease and I wanted to say thank you for this site. I have found it very helpful. Please let me know your thoughts on my docs plan to cure me! I have insurance but the chelation will obviously be out-of-pocket and very expensive so I want to make sure I am on the right track.

    God bless each and every person who is having to go through this… Xoxo

    Reply

    • Pam Dodd Says:

      Fitgirl, your doctor is wise to remove your mercury (I’m assuming if you have any silver fillings in your teeth, you’ll also get those removed as they release a bit of mercury every time you chew or drink something hot). And yeast is often a problem with Lyme, although that’s usually from antibiotic use.

      I’d think your doctor would want to test you now for coinfections so you and he will know what you’re up against for treatment. You also don’t say what antibiotics he plans to use. As long as he’s following the ILADS guidelines, you should be fine, although having Lyme for so long presents problems. You should be prepared for long-term treatment, as in years not just weeks or months.

      Glad we could help. Good luck! I’m sending you TX Lyme info in case you want a second opinion or need to find another doctor. Thanks for commenting.

      Reply

  3. Susiern Says:

    I am an RN who recently got diagnosed with ehrlichiosis. I won’t bore you with the details, but it has been a long journey these past 6 weeks, and i truly believe that if I had been the “typical” patient who just believes the Dr when he said” all of your tests are fine, you just need to rest”,I wouldn’t be on this site. After much research on medical data bases, I begged him to order the appropriate tests after an initial negative lyme test, and lo and behold, I was correct :)
    I just started on docycycline for 2 weeks. I am wondering if there is a LLMD here in Ct( yes…. Near old lyme ct…LOL!)
    Many thanks for this info!

    Reply

    • Pam Dodd Says:

      CT info is on its way, Susie. Glad you’ve persisted with your diagnosis. Thanks for asking.

      Reply

      • Liz M. Says:

        I also am in need of a CT LLMD in the Farmington Ct area. I was bitten a couple of weeks ago not sure what, and now have a circular shape rash with red outline. Went to walk in and the doctor put me on 10 days of 200mg doxycycline and a standard blood test for Lyme.

        I believe from your blogs I need more plus the right MD.

        Thanks. Liz

      • Pam Dodd Says:

        Yes, if you have Lyme, Liz, 10 days of Doxy usually isn’t enough. I’m sending CT Lyme info so you can find a doctor who knows how to diagnose Lyme correctly and treat it adequately if you have it. Glad you asked.

  4. Sherri Says:

    I was just diagnosed with lyme. I figure I was bitten by tick early June 2012. My doctor has put me on 30 days of doxycycline. He is NOT a LLMD. Are there any LLMD in the Amsterdam, NY area? Thanks

    Reply

    • Pam Dodd Says:

      NY Lyme info is on its way, Sherri. Congrats on your Lyme diagnosis. Better to know than not know what you have. Thanks for asking.

      Reply

  5. Naoma C. Says:

    Pam, I am totally confused. I was doing fairly well, but had a mild Herx, then followup visit with the Ll on July 19. I was given a shot of antibiotic and it knocked me for a loop. Finally he prescribed a low dose steroid for 3 days. It did not help this time. Skipped the next on the list, which was the shots, went to Zithromax and still not much relief. I decided on the shots, which the nurse said I could take a smaller dose. I am weak in the legs, and have some brain fog. I will have to call the dr’s ofc again.

    By the way, he recommended a holiday from antibiotics on the 19th and I thought I would be better by now.
    Naoma

    Reply

    • Pam Dodd Says:

      Healing from Lyme is a roller coaster, Naoma. Often two steps forward and three steps back. It is disappointing not to be better when you expect to be, but such is the nature of Lyme and its co-infection friends. Keep at it. Thanks for the update.

      Reply

  6. Laurie Says:

    I am looking for a LLMD in the Cleveland/Akron Ohio area. My friend has many, many symptoms of Lyme, but recent blood work and LP at Cleveland Clinic was negative. He was at Cleveland Clinic expecting a diagnosis of MS, but that was negaative also. He was basically dismissed from the Mellen Center with no diagnosis. Help!

    Reply

    • Pam Dodd Says:

      I’m sending OH and MI Lyme info, Laurie. Your friend should travel as far as need be to find a competent Lyme specialist. Unfortunately places like the Cleveland Clinic and the Mayo Clinic aren’t up to snuff yet on correctly diagnosing and treating Lyme. Thanks for asking.

      Reply

  7. Naoma C. Says:

    Hi Pam

    My daughter just sent me the info on George Mason University and their work on researching Lyme. Do you have any thoughts on this? I feel that at least somebody is doing something.

    Also I was told about a gel that is put on the bite as soon as it is noticed. Comments

    Thanks

    Reply

    • Pam Dodd Says:

      The new George Mason test sounds promising, Naoma. We’ll all have to wait and see if it’s good.

      Same comment for the gel. It allegedly has Azithromycin in it. My only concern is even if it works for Borrelia, the Lyme bacterium, infected ticks usually transmit one or more other infections, which the gel medication might not affect.

      As always, Naoma, thanks for commenting.

      Reply

  8. Tami R. Says:

    Could you please send me information on a LLMD or LLND for the Central Coast or Central Valley of California. Thank you.

    Reply

  9. Cindy K Says:

    Can you please send me information on Lyme disease doctors near Houston, TX.

    Reply

  10. Karen j Says:

    Would like a Lyme specialist in Southern Indiana or Louisville, KY. Thank you.

    Karen

    Reply

  11. ronnie c Says:

    I too stumbled upon this great website. I am being treated for lyme and erlichiosis by a wonderful LLMD (neurologist)in orange ct. Keep up your faith, all of you! He is curing me slowly; I feel improvement. My regular doc treated me with Doxy for 1 month. It did not help because the regular lab did not pick up the erlichiosis. My LLMD sent it to another lab which did more sensitive testing and found the Erlichiosis. It has been horrible. I had been pretty much bedridden. Couldnt swallow with gagging all the time, tachycardia, anxiety, sweats, dizzy, couldn’t hear, double vision total body pain
    Now I do not stay in bed. I’ve been on a Cephalosporin. Off Doxy for now.

    Once I manage this disease, I will become an activist–something must be done about this hideous, insideous epidemic. We should stand up and be counted, our voices heard. Have hope, all of you out there silently suffering. Good luck in your fight!

    Reply

  12. thomas d Says:

    My story is typical, I was bitten by a tick in 2000. The doctor ignored my question could it be lyme disease and gave me a steroid based skin cream which greatly accelerated the infection. On my sixth visit, with bells palsy, I insisted they test me at least. Positive confirmation and one month of amoxicillan 1000mg. I felt great but, wasn’t cured and my symptoms slowly, painfully, returned. Major problems were diagnosed and then ignored by my local medical provider once again. They labeled me with anxiety (a symptom of lyme). Finally, in disgust, I turned my back on the frauds and found the herbal formula Lymeaid. I have cognitive function again but, the arthritis is still really bad. I hope to at least get my symptoms documented and some day afford treatment.

    Reply

    • Pam Dodd Says:

      Thanks for sharing your story, Thomas. I’m glad you’ve found some relief. From what I’ve learned about Lyme, it’s almost impossible to get rid of it if it has become chronic without using some antibiotics.

      Reply

      • Thomas D. Says:

        Thank you for providing a forum for communicating and response. When I actually can afford to get a LLMD that will treat me with the proper antibiotics, I will do as you suggest. I am aware that it is not a guarantee and works for some better than others. We do the best we can with what we have available and hope that it works for us. I have found that staying opptimistic is essential for immune system welfare and holding off major reoccurences. Depression
        crashes the immune system and the bacteria takes advantange. Just being able to think so I can come up with a strategy as able, is a amazing feeling. A little clarity, goes a long way……

      • Pam Dodd Says:

        Boy, you said. A little clarity does go a a long way, Thomas. Good luck.

  13. April L. Says:

    I’m a 34 yr. old mom, i’ve been experiencing 24/7 burning on the top of my head since Feb. 2011 on a pain scale of about 6. With some headaches, muscle tension, then in May I began to have seizure-like syptoms. My mother n’ law took me to the er after i fell to the floor in front of my kids. They described to her signs of seizure, the hospital found nothing in a CAT SCAN or blood tests. I have now been through several tests which they have never been able to give me true answers, I went to my family Dr. she has failed to help me, i feel they have all pushed me to a mental issue, i’m going to be crazy soon with out help! ! ! I then saw the show on DR.PHIL on Friday April 13, 2012 ‘Under Your Skin’ my husband and I just sat with our eyes glued and instantly rememebered the day he dug a tick out of my back in 2009, I had the bullseye rash, flu, muscle aches you name, it went away. So I believed it did, I never went to a dr. back then, and now my current DR. won’t test me. What is my next step? please help, thank you!

    Reply

    • Pam Dodd Says:

      April, a bull’s-eye rash means Lyme. I’m sorry no doctor you’ve seen so far has been able to figure this out. You aren’t crazy. Lyme can mimic all the psychiatric disorders. You should see a Lyme specialist to be tested with the right test. If you tell you where you live (city, state), I’ll send you info on how to find someone who knows how to diagnose and treat Lyme correctly. Glad you saw the Dr. Phil show and showed up here. Thanks for asking.

      Reply

  14. Marzell Says:

    I would greatly appreciate information on findind A LD knowledgeable
    doctor in the Great Falls Virgina area. Thank you.

    Reply

  15. juju Says:

    Hello..Im 24 years old and was recently diagnosed with anaplasmosis and ehrlichiosis. I spent most of my teen years being dismissed by doctors, until i was blessed with one wirth the knowledge to diagnose me. Neither are in there acute stage. Does anyone know of someone that is living with both or one of these diseases?

    Reply

    • Pam Dodd Says:

      JuJu, many people have either Anaplasmosis (formerly called human granulocytic Ehrlichiosis) or Ehrlichiosis (human monocytic Ehrlichiosis). If your immune systems can handle them moderately well by itself, you can motor along for some time with no treatment. However, both are treatable with Doxycycline, a cheap, common antibiotic. I had Anaplasmosis and got rid of it in 4 months on Doxy. Ehrlichiosis takes longer. Thanks for asking.

      Reply

  16. Healthgeek Says:

    Three weeks ago, I had an itch under the left arm. I looked and saw a “mole”
    Scratching a few days later, the “mole” fell off.
    Meanwhile, I had flu, sore throat, cough, chest infection,
    floaters, heart rate went 30 bmp over base line for three weeks,
    and now arrythmias. No longer flu.

    I have not been expose to “ticks” not gone on grass or woodlands.

    Could it have been flu, or could it be a bug bite causing other
    similar illness?

    Reply

    • Pam Dodd Says:

      Healthgeek, Lyme ticks are very tiny. You could have had a tick bite, or even a spider bite. Other biting insects besides ticks carry Lyme, although you won’t see anything official on that. Re: the flu, I haven’t heard that floaters and continuing coronary issues are usual symptoms. Thanks for asking. If you want info on how to find a Lyme specialist near you, let me know.

      Reply

      • thomas d Says:

        Hi Pam, A point of interest perhaps, ticks are actually spiders not insects. Just thought I would mention it.

      • Pam Dodd Says:

        You’re right, Tom! Thanks for the correction. Ticks are arachnids, as are spiders. Since I was a kid, I’ve always called crawly things bugs or insects. I stand corrected.

  17. Betty C Says:

    My husband had/has lymes disease (does it ever go away?) about 3-4 years ago. Severe case, affected his moods, became so angry and hostile I had to threaten him with seeing the doctor or I would divorce him…He of course had lymes. 6 weeks of antibotics 1 week off and I sent him back. 6 more weeks on. His mood has been permanently altered, but at least I can live with him now. My real concern here is last May he was diagnoised with Multiple Myloma cancer.(we figure he has had it at least 2 years before diagnoised.) So many of his blood cancer tests reflect the results you would see in Lymes Disease Stage III blood tests. I am not saying my husband does not have cancer, because he does. He is 55 and has gone through his first stem cell transplant and is looking at a tandum transplant real soon…..after his fungal pnuemonia clears. I will be asking the MM support group if they have ever had lymes disease. I am so curious as if there is any corrolation or if this was my husbands trigger. Anyone ever hear of this or any connection, please let me know. Thanks.

    Reply

    • Pam Dodd Says:

      Betty, I know people with Lyme who’ve also gotten cancer. Lyme really socks it to the immune system so it shouldn’t be a surprise if other maladies, including cancer, show up. As you’ve probably heard many times before, correlation is not causation. Just because two things happen at about the same time doesn’t mean either caused the other. Thanks for asking and good luck!

      Reply

  18. cathy l Says:

    Are there any Lyme literate doctors in Albany NY area?

    Reply

  19. Jamie Says:

    Hi,

    My fiance is being diagnosed with severe, aggressive MS, after contracting lyme last may 31, 2011. She has been negative on all but the first screening, which then became a negative western blot, even though 2 bands unique to lyme were there? They are about to give her massive steroids which will probably kill her if they are wrong that she is negative. She did get some antibiotics after the bite, but it was 250mg bid, amox. This was not adequate and when she ran out then the tachycardia started along with weakness and “emphysema” that resolved with the next course of amox.(ya.. I know xD). Her doctor said she was insane and she couldn’t have lyme. She did have a small target rash too. She has bad sensitivity to light too. She was so weak that she had to leave work and after a few more days we finally got the stupid doctor to prescribe more amoxycillin, and in a better dose, but again it was not good enough @500mg. BID but it took the symptoms away until she ran out again. This doctor who is supposed to also be a cardiologist, who ignored all her blood pressure and racing heart, said “no more antibiotics.. they are dangerous” and her return symptoms were just “your body acclimating to getting off them”. pff..

    She changed doctors because he was such a jerk and insisted its in her head and shes a hypochondriac. He convinced her mother who is also his patient this too.

    Anyway, the new doctor gave her about 3 weeks of 500mg.TID, but she at this point only kept taking it BID because I guess lyme caused her to be scared of just about every medicine and half of the foods she used to eat too. She stopped taking it after 2 weeks because her bladder became a problem and they said she had a high bacteria count which we figured was from the med. We were wrong though. it turned out it was from a huge fibroid tumor pushing on her bladder and God knows what else. She could not eat and lost 30 pounds. By the time they did the surgery she was a bone rack. Her period stopped in November and hasnt returned (shes 41) They said its her lack of fat and stuff..

    The mental confusion and total dysphoriam etc she still suffers from are so bad it prevents her from doing anything, even frying a hamburger! I now care for her 24/7. Because of this, the total weakness in her legs, the awful numbness and pressure in her abdomen ad many other things, we finally told the doctor the surgery didnt fix it all and we thought a month of recovery should have helped her confusion, etc.. The Dr. did some scans and found nothing, but her brain MRI shows a few areas of “Demyliation” like from MS. They admitted her for tests and did a spinal and serum lyme test and no lime showed up. Supposedly she has “bands” for Multiple Sclerosis and the fact she has a 2mm sized “plaque” or lesion on her T7 spinal cord makes they think completely that she has MS only, and an aggressive form at that. They say the only treatment for it if it was lyme is IV antibiotics. Her doctor was talked out of giving them to her by the infectious disease jerk and he neuro doc. So now, today we demanded at the very least a prescription for amox 500 tid. He finally gave her 2 weeks worth. Better than nothing I guess, and I hope and pray it at least clears her head so we can prove its not the ms.

    If they give her the massive steroids they want to, and she DOES have lyme, then they will probably kill her. They act like we are resisting life saving treatment if she doesnt do it. Taking steroids will dampen her immune system and I dont know if she will survive another tick bite after, which happens constantly here. South Eastern MA. has been taken over by ticks, and every year is more and more ridiculous.

    As far as I can tell there are no Lyme doctors in MA. but I can take her to RI too. Any ideas? Someone tried to send us to [dr’s name removed] Oo.. they thought he is an expert on lyme.. :( luckily we found out about him first!

    Thx

    Reply

    • Pam Dodd Says:

      Jamie, there are Lyme specialists in Massachusetts. I’m sending you info on how to find one. It doesn’t sound like your fiancee has had the IGeneX tests for Lyme and for the co-infections that often come with it (Babesia, Bartonella, Ehrlichia, and Anaplasmosis). Most people with Lyme have at least one. Please take her to someone who knows how to diagnose Lyme correctly and treat it adequately. Thanks for telling her story and for being such a caring partner.

      Reply

      • Cathie Says:

        Pam,
        After having so many of the symptoms that many have stated they exhibited and attributing the joint knee pain to perhaps a torn meniscus or other injury, my 30 yr. old son has been diagnosed with Lyme Disease. He has had these symptoms for at least 6 months before seeking attention from a doctor. We too are in Massachusetts. Could you also please send me the info on how to find a doctor here who can help him. Of course as him mom I’m a nervous wreck now. Thank you in advance for your help.

      • Pam Dodd Says:

        I understand, Cathie. There’s nothing worse than seeing your son or daughter suffer, no matter how old they are. MA Lyme info is on its way. Thanks for asking.

  20. Brenda Says:

    Spouse given tentative diagnosis on non-typical Parkinsons, then Spranuclear Palsy, then back to Parkinson’s. Now Neuro states that,
    because Parkinson’s is not worse, he’s not positive about the diagnosis. Spouse also diagnosed a few years ago with Renaud’s due to cold hands. Recently read Washington Post article that lists all the possible symptoms of Lyme’s Disease and spouse has a lot of them. He used to find a lot of ticks on him due to being outdoors but we never noticed any synptoms at that time. Would love to find a Lyme’s doctor near Annapolis who might help us.
    Thank you very much,

    Reply

  21. Rita Says:

    Please send me information on a Lyme Doctor in Nassau County, Long Island and/or New York City area. Thank you.

    Reply

  22. Dean Says:

    Hi,

    Great website! I have many symptoms associated with lyme, however I have since been on doxycycline and cipro for a month eat with no resolve. Does this mean I do not have lyme?
    Could you please send me doctor info for Upstate NY? Albany Area?

    Thanks!

    Reply

    • Pam Dodd Says:

      Dean, it takes longer than a month of treatment to get rid of Lyme. You should see a doctor who knows how to diagnose Lyme and associated infections correctly and treat them adequately if you have any of them. NY Lyme is on its way. Thanks for asking.

      Reply

  23. denise d Says:

    lyme doctor on colorado,

    i am in denver but anywhere in Co would be helpful

    thank you so much

    denise

    Reply

  24. Kay Says:

    Can you please send me information on Lyme disease doctors in Georgia

    Reply

  25. Rebecca Says:

    Hi
    I have got bitten by this tick nearly around July 15 or so and had gone tot he doc after 3 weeks due to bad knee pain with redness around it and she was like you have nothing..!! I had same severe pain and fatigue in janurary 2012 and went to a Orthopedic and He did a western blot on me and i came 9 bands positive and then the IDD she put me on 2 months of Doxcy but i now have new symptoms like electric shock sensations in hands and legs and very burning eyes!!i d ont know who to go to or do what..??Can you suggest …..!! New to USA,the people i know no nothing abt lyme… ! stumbled on your blog!!

    Reply

    • Pam Dodd Says:

      Where do you live (city, state), Rebecca? Let me know and I’ll send info on how to find a Lyme doctor. Thanks for asking and welcome to the US!

      Reply

      • Chris A Says:

        Oh man, I was bit by a tick two weeks ago. Was prescribed doxycycline for preventative measures for two weeks. However after reading so much online I really am freaking out about the possibility of Lyme. The doctors I’ve seen have been completely useless(completely uneducated on testing of Lyme). One doctor, I provided with the tick that bite me so as to have it undergo Lyme testing and the invalid doctor sent it to only get ID’ed at the lab which has now disposed of it. This same doctor said 1 day of doxycycline would be effective and that I should just wait and see if any symptoms arise….I live in a Lyme endemic area!!

        Should I wait to get tested in another 2weeks(2weeks after my doxycycline regime)? (If so, should I go through Igenex or the lab my primary care provides first?)

        Should I ask to be given an extension on the doxycycline 2week regime?

        (by the way I live in White Plains, NY if someone could provide me with any LLMDs in my areas)

      • Pam Dodd Says:

        Chris, if you have Lyme, you should also be tested for one or more the four co-infections that often come with it (Babesia, Bartonella, Ehrlichia, and Anaplasmosis). I’m sending you NY Lyme info so you can find a doctor who knows how to diagnose Lyme correctly and treat it adequately if you have it. A two-or-more-week extension on your Doxy prescription would be very helpful. Neither one day nor two weeks of Doxy does anything. Thanks for asking.

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