5 ms·

My father nearly died of [what we believe to be] Lyme disease. A few years ago he started getting awful bouts of pain all over his body. He couldn't eat, was lo

My father nearly died of [what we believe to be] Lyme disease. A few years ago he started getting awful bouts of pain all over his body. He couldn't eat, was losing weight, was losing muscle mass fast. It got the the point where he was using a walker (he was less than 60 years old at the time) and could barely lift a 5 pound weight. He went to a bunch of different doctors, had all kinds of scans run, and only kept getting worse. At one point my mother noticed that every test any doctor gave for Lyme disease came back "inconclusive". She pointed out to one of the doctors, who said that it didn't mean anything as apparently the test is not very reliable. Finally, they found a doctor who prescribed medication to treat Lyme disease without a definitive test because apparently there was a low risk of side effects. Within a couple of weeks of starting the medication, my father was visibly better, within a few months he was basically back to normal, and is basically fully recovered now. (Sorry folks, I don't know any of the specific drugs or medical terminology.) We have no idea how or when he got infected. As far as he knows, he never had a bullseye rash, although apparently that doesn't always happen. Now I slather myself in DEET whenever I go into a an even semi-woodsy environment.

Assossa 7y ago
I would greatly appreciate it if you could find the name of that medication. My sister has Lyme Disease and is still suffering health effects from it despite various treatments.
- koolba 7y ago
  The treatment for Lyme is via antibiotics but I think it’s only effective if it’s relatively early on in the course of the disease (on the order of weeks or months). Caught early it’s curable. One of the issues though is symptoms are not caught early on as they’re so general and by the time treatment starts the disease has spread and already caused the major damage.
- spacebatsghost 7y ago
  Most non-Lyme Literate Medical doctors prescribe Doxycyclin. If you are seeing a Lyme Literate Medical doctor they'll put you on a cocktail (often Clarithromycin, Doxy, Alinia (anti-parasitic), and a few others. This also depends if you have co-infections or not.
  - nradov 7y ago
    There is no formal certification process for "Lyme Literate Medical Doctors". Many are quacks who don't follow evidence based medicine guidelines. https://sciencebasedmedicine.org/florida-revokes-medical-license-of-lyme-literate-doctor/ https://sciencebasedmedicine.org/florida-revokes-medical-lic...
  - twic 7y ago
    The UK NICE guidelines suggest doxycycline, and have a section discussing the evidence for that: https://www.nice.org.uk/guidance/ng95 https://www.nice.org.uk/guidance/ng95 "Lyme literate" seems to be a pseudoscience term related to the ME-like crypto-syndrome "chronic Lyme disease" - for example, see towards the end here: https://sciencebasedmedicine.org/legislative-alchemy-2014-so-far/ https://sciencebasedmedicine.org/legislative-alchemy-2014-so...
    - deleted 7y ago
      [deleted]
  - Balgair 7y ago
    A family member is on Doxycyclin for another issue unrelated to Lyme. It has caused them a fair amount of nerve degeneration issues in the toes and fingers. This is perhaps the risk that the some doctors are trying to avoid.
- carapace 7y ago
  Really? Medical advice from randos on the Internet? HN randos, sure, but still. Reality check bruv.
- DoreenMichele 7y ago
  Then you really need to consider that it's probably not as simple as "she has x disease and needs the right antibiotic." My best understanding: parasitic infections tend to thrive due to feeding on detritus from other infections and persistent infection in spite of multiple treatments probably means she's being reinfected on a regular basis. My chronic infections did not begin to improve until I informed my then spouse "You are never touching me again without a condom because I think you are reinfecting me." following a conversation with a friend who was a physician. He had minored in parasitology and I believed I had an undiagnosed parasitic infection. He said it was plausible, given what I was going through. That was a major turning point in my health. After nearly a year of being at death's door, the very next round of antibiotics stabilized me and I began gradually getting better. Prior to that, I went through two periods a few months apart of needing new antibiotics every single time I ran out for 10 or 12 weeks. Nothing was really working. The months in between? I was bedridden, sleeping 18 to 20 hours a day and probably having a lot less sex than usual. (But I honestly just don't remember how often I was having sex during that awful, awful time. I mostly remember hallucinating conversations with The Grim Reaper.) (Disclaimer: This is not medical advice. I am not a doctor. I don't play one on TV.)
  - go_ruby 7y ago
    So was your spouse reinfecting you?
    - DoreenMichele 7y ago
      I believe so. Of course, I can't prove it and I find the question flabbergasting given that I already stated that insisting on condoms was fairly promptly followed by my condition stabilizing and improving. For the record: I eventually divorced him. I've been celibate for medical reasons for over 14 years, in part because men I dated could not follow the simple instruction to bring a damn condom for health reasons and I was too sick and vulnerable to get up and walk out like I should have. After the third well-educated idiot pulled this on me, I vowed to myself I would be celibate until I was well, basically. I've gotten off all drugs. I'm gradually putting in more hours on freelance work. I'm mostly healthy when doctors said that was not ever going to happen. But that's enough about my (utter lack of a) sex life.
- astazangasta 7y ago
  Lyme Disease is caused by a bacterial infection that can cause nerve damage. Even if you treat it with antibiotics and remove the infection, the nerve damage might remain and be very hard or even impossible to rehab.
  - hermitdev 7y ago
    I have nerve damage from arthritis in my spine. Mine is definitely not correctable with current medical technology (degenerative discs, bone spurs and pinched nerves & spinal cord from the above). Most days, I'm resting at a 4-5 on a 1-10 pain scale. It can easily reach a 7-8 on bad days. When I go for allergy shots, I dont even notice the injections, typically. Thing is, most pain meds dont even work. NSAIDs don't make a dent. Opiods dont work either (not that I could get a doc to prescribe them if they did). Muscle relaxers do help quite a bit in reducing the pinching of nerves. I recently did a 7 day trial on Celebrex, and after 3 days, I was in the least pain I'd been in for years (apparently it's one of those that builds over a few days). I see my PCP tomorrow and will hopefully get an ongoing prescription. Ive been on Lyrica and gabopentin for the nerve pain in the past. While they helped with the nerve pain, I had a lot of side effects with both, and don't want to go back on either.
    - astazangasta 7y ago
      Have you tried much acupuncture? I've found it extremely effective for nerve issues, although nothing approaching what you are dealing with. But in general western medicine seems bad at resolving these kinds of things, it might be worth investigating. If you are in SF competent practitioners abound.
      - dotancohen 7y ago
        There is no reason for this comment to be downvoted. It is both informative and insightful.
        DoreenMichele 7y ago
- deleted 7y ago
  [deleted]
- lymeeducator 7y ago
  Treatment should be customized for each individual. It's quite possible she has more than Lyme. Bartonella, Babesia, and Erlichia are quite common. Mold and metals can also play a role in immune suppression, depending on the HLA genetic SNPs. Treatment approaches include detoxing, strengthening the immunne system and killing bacteria/parasite infestations. Herbal treatments, from Buhner or Cowden (ddg or google those two), or Traditional Chinese Medicine can be very helpful and mostly used in conjunction with western pharmaceuticals. Some tests to get on a regular basis include: C4a, C3a, TGF-B1, MMP-9. Igenex is the best test lab for Lyme.
- sbenitoj 7y ago
  Get this book — Toxic: Heal Your Body from Mold Toxicity, Lyme Disease, Multiple Chemical Sensitivities, and Chronic Environmental Illness I didn’t have Lyme but I had mold toxicity, and pretty much every doctor and test came back saying, “everything’s fine” when I clearly knew it was not. If his treatment recommendations for Lyme are half as good as his recommendations for mold, this book is worth 1,000x the price. Toxic: Heal Your Body from Mold Toxicity, Lyme Disease, Multiple Chemical Sensitivities, and Chronic Environmental Illness https://www.amazon.com/dp/1628603119/ref=cm_sw_r_cp_api_i_SvVeDbQ8ERH2A https://www.amazon.com/dp/1628603119/ref=cm_sw_r_cp_api_i_Sv...
idlewords 7y ago
My mom just got Lyme disease with similar alarming symptoms, and has responded rapidly to antibiotics. I'm glad your father got the diagnosis in time. One thing I learned in the process is that the bullseye rash is often just a broad, flat red area, and in some people (as you point out) doesn't show at all. Any summertime flulike symptoms in tick country should lead you to suspect Lyme disease (or the group of similar related tick-borne infections).
tinus_hn 7y ago
The bull’s eye rash is deceptive because that is what people expect but depending on your location it may only appear in 20% of all cases.

Assossa 7y ago

I would greatly appreciate it if you could find the name of that medication. My sister has Lyme Disease and is still suffering health effects from it despite various treatments.

koolba 7y ago
The treatment for Lyme is via antibiotics but I think it’s only effective if it’s relatively early on in the course of the disease (on the order of weeks or months). Caught early it’s curable. One of the issues though is symptoms are not caught early on as they’re so general and by the time treatment starts the disease has spread and already caused the major damage.
spacebatsghost 7y ago
Most non-Lyme Literate Medical doctors prescribe Doxycyclin. If you are seeing a Lyme Literate Medical doctor they'll put you on a cocktail (often Clarithromycin, Doxy, Alinia (anti-parasitic), and a few others. This also depends if you have co-infections or not.
- nradov 7y ago
  There is no formal certification process for "Lyme Literate Medical Doctors". Many are quacks who don't follow evidence based medicine guidelines. https://sciencebasedmedicine.org/florida-revokes-medical-license-of-lyme-literate-doctor/ https://sciencebasedmedicine.org/florida-revokes-medical-lic...
- twic 7y ago
  The UK NICE guidelines suggest doxycycline, and have a section discussing the evidence for that: https://www.nice.org.uk/guidance/ng95 https://www.nice.org.uk/guidance/ng95 "Lyme literate" seems to be a pseudoscience term related to the ME-like crypto-syndrome "chronic Lyme disease" - for example, see towards the end here: https://sciencebasedmedicine.org/legislative-alchemy-2014-so-far/ https://sciencebasedmedicine.org/legislative-alchemy-2014-so...
  - deleted 7y ago
    [deleted]
- Balgair 7y ago
  A family member is on Doxycyclin for another issue unrelated to Lyme. It has caused them a fair amount of nerve degeneration issues in the toes and fingers. This is perhaps the risk that the some doctors are trying to avoid.
carapace 7y ago
Really? Medical advice from randos on the Internet? HN randos, sure, but still. Reality check bruv.
DoreenMichele 7y ago
Then you really need to consider that it's probably not as simple as "she has x disease and needs the right antibiotic." My best understanding: parasitic infections tend to thrive due to feeding on detritus from other infections and persistent infection in spite of multiple treatments probably means she's being reinfected on a regular basis. My chronic infections did not begin to improve until I informed my then spouse "You are never touching me again without a condom because I think you are reinfecting me." following a conversation with a friend who was a physician. He had minored in parasitology and I believed I had an undiagnosed parasitic infection. He said it was plausible, given what I was going through. That was a major turning point in my health. After nearly a year of being at death's door, the very next round of antibiotics stabilized me and I began gradually getting better. Prior to that, I went through two periods a few months apart of needing new antibiotics every single time I ran out for 10 or 12 weeks. Nothing was really working. The months in between? I was bedridden, sleeping 18 to 20 hours a day and probably having a lot less sex than usual. (But I honestly just don't remember how often I was having sex during that awful, awful time. I mostly remember hallucinating conversations with The Grim Reaper.) (Disclaimer: This is not medical advice. I am not a doctor. I don't play one on TV.)
- go_ruby 7y ago
  So was your spouse reinfecting you?
  - DoreenMichele 7y ago
    I believe so. Of course, I can't prove it and I find the question flabbergasting given that I already stated that insisting on condoms was fairly promptly followed by my condition stabilizing and improving. For the record: I eventually divorced him. I've been celibate for medical reasons for over 14 years, in part because men I dated could not follow the simple instruction to bring a damn condom for health reasons and I was too sick and vulnerable to get up and walk out like I should have. After the third well-educated idiot pulled this on me, I vowed to myself I would be celibate until I was well, basically. I've gotten off all drugs. I'm gradually putting in more hours on freelance work. I'm mostly healthy when doctors said that was not ever going to happen. But that's enough about my (utter lack of a) sex life.
astazangasta 7y ago
Lyme Disease is caused by a bacterial infection that can cause nerve damage. Even if you treat it with antibiotics and remove the infection, the nerve damage might remain and be very hard or even impossible to rehab.
- hermitdev 7y ago
  I have nerve damage from arthritis in my spine. Mine is definitely not correctable with current medical technology (degenerative discs, bone spurs and pinched nerves & spinal cord from the above). Most days, I'm resting at a 4-5 on a 1-10 pain scale. It can easily reach a 7-8 on bad days. When I go for allergy shots, I dont even notice the injections, typically. Thing is, most pain meds dont even work. NSAIDs don't make a dent. Opiods dont work either (not that I could get a doc to prescribe them if they did). Muscle relaxers do help quite a bit in reducing the pinching of nerves. I recently did a 7 day trial on Celebrex, and after 3 days, I was in the least pain I'd been in for years (apparently it's one of those that builds over a few days). I see my PCP tomorrow and will hopefully get an ongoing prescription. Ive been on Lyrica and gabopentin for the nerve pain in the past. While they helped with the nerve pain, I had a lot of side effects with both, and don't want to go back on either.
  - astazangasta 7y ago
    Have you tried much acupuncture? I've found it extremely effective for nerve issues, although nothing approaching what you are dealing with. But in general western medicine seems bad at resolving these kinds of things, it might be worth investigating. If you are in SF competent practitioners abound.
    - dotancohen 7y ago
      There is no reason for this comment to be downvoted. It is both informative and insightful.
      - DoreenMichele 7y ago
deleted 7y ago
[deleted]
lymeeducator 7y ago
Treatment should be customized for each individual. It's quite possible she has more than Lyme. Bartonella, Babesia, and Erlichia are quite common. Mold and metals can also play a role in immune suppression, depending on the HLA genetic SNPs. Treatment approaches include detoxing, strengthening the immunne system and killing bacteria/parasite infestations. Herbal treatments, from Buhner or Cowden (ddg or google those two), or Traditional Chinese Medicine can be very helpful and mostly used in conjunction with western pharmaceuticals. Some tests to get on a regular basis include: C4a, C3a, TGF-B1, MMP-9. Igenex is the best test lab for Lyme.
sbenitoj 7y ago
Get this book — Toxic: Heal Your Body from Mold Toxicity, Lyme Disease, Multiple Chemical Sensitivities, and Chronic Environmental Illness I didn’t have Lyme but I had mold toxicity, and pretty much every doctor and test came back saying, “everything’s fine” when I clearly knew it was not. If his treatment recommendations for Lyme are half as good as his recommendations for mold, this book is worth 1,000x the price. Toxic: Heal Your Body from Mold Toxicity, Lyme Disease, Multiple Chemical Sensitivities, and Chronic Environmental Illness https://www.amazon.com/dp/1628603119/ref=cm_sw_r_cp_api_i_SvVeDbQ8ERH2A https://www.amazon.com/dp/1628603119/ref=cm_sw_r_cp_api_i_Sv...

idlewords 7y ago

My mom just got Lyme disease with similar alarming symptoms, and has responded rapidly to antibiotics. I'm glad your father got the diagnosis in time. One thing I learned in the process is that the bullseye rash is often just a broad, flat red area, and in some people (as you point out) doesn't show at all. Any summertime flulike symptoms in tick country should lead you to suspect Lyme disease (or the group of similar related tick-borne infections).

tinus_hn 7y ago

The bull’s eye rash is deceptive because that is what people expect but depending on your location it may only appear in 20% of all cases.