Hello to all my friends

Discussion in 'Lyme Disease Archives' started by kellyann, Jul 5, 2006.

  1. kellyann

    kellyann New Member

    How are you all today? Please let me know how you are doing, I think about each of you every day! And pray for you too! I believe in the power of prayer! Mindy how is your pain level today? Cindi, I haven't heard from you in awhile, what are you up to? Zoe, what interesting things are you looking up? Vitoria how is your son? Everyone else: How are you today? What are you doing today? How are you coping with your illness today?

    I am okay, still have a horrid headache. I am calling the doctor today to see if he can do something. I made an apointment with a dermatologist to see about my arm pitt lumps and facial bumps. I go tommorrow at 10:20 a.m. I'll let you know how it goes.

    I'll talk to you soon, I hope!

  2. ajp

    ajp New Member


    So sorry to hear that you still have that headache. I once had a migraine for two weeks straight...it was horrible. Have you tried any of the migraine meds? I used to take one of them, but can't remember the name.

    I am so glad that we have this site.Everyone has been so much help to me. I also pray for all of us here on the site.

    Good luck tomorrow at the doctors. Let us know how you make out. Hope you have a great day and get some pain relief for that headache.

    Love Mindy
  3. victoria

    victoria New Member

    I sympathize with your headache, I've been fighting my same old headache still, coming and going... more here than not!

    -on top of it I am herxing myself, don't know if any of the headache pain might now be included... hard to say, since I did have it before I just raised my abx level. I think if it would just go away permanently I'd be at least 50% 'cured'!

    My son has just started his second pulse of Levaquin & septra, is going to try to take it 5 days in a row instead of just M-W-F as he ended up doing last month because the herx was too much for him... one of the effects of the herx is that it is causing him to have extreme insomnia, up until 4 or 6 AM before he can sleep. The 3rd week he'll be adding the Flagyl as before, that does cause a bigger herx all over again.

    I'm kind of wondering about myself, because I am suddenly doing the same every night that I take the abx... hate it, because then I'm tired on top of herxing!

    Hope you get some firm answers about those swellings tomorrow, and that it is not anything serious!

    All the best,

  4. minimonkey

    minimonkey New Member

    I'm here! I pray for all of us, too -- it is so nice to have this small support group here.

    I'm so sorry for you folks that have headaches -- I had horrible ones for years, and the last 6 months before diagnosis I was waking up with a migraine every day -- so I really sympathize!!!!

    For those of you who are not being treated for babesia, I strongly suggest you talk to your LLMD about it -- bad headaches can be a babs thing. Mine got WAAAY better as soon as I started treating for babs -- I was just commenting to my husband that I have been headache free for the past 2 weeks now -- what a monumental relief!

    Also, migraine meds really helped me a lot -- they all worked okay, but Relpax is the one that works best for me. There are also rx that help prevent migraines -- topamax, elavil, etc. I couldn't handle the side effects from topamax, but I take a low dose of elavil before bed, and it makes me sleep better. Haven't had any problems with that one, at all.

    Kelly -- I'll be interested to hear what the doc says about the armpit lumps, and I hope they can get rid of them for you -- that sounds just awful!!!!

    In addition to the abx, I think one of the things that is helping me a lot is that I am doing very aggressive supplementation with vitamins, amino acids, etc -- and herbs for detox, too -- I honestly believe that is half the battle with these diseases -- they deplete the body of a lot of things we need for health. I'm happy to chat on and on about this for folks who are interested.

    I EXERCISED yesterday!!! It was the first workout I've been able to do in almost 2 years, and it felt SOOOOO good. I did 15 minutes on the rebounder (mini-trampoline) and hope to work up to 45 minutes in time. After that, I will start doing pilates and my other workout tapes -- I used to be an exercise fiend, when I was feeling well....going to try another rebounding session today. Rebounding is supposed to be good for stimulating the lymph system and help detox -- I actually like it because it is fun, and very low impact, and can be done at home.

    Hoping you all are seeing improvement and surviving the herxes -- I swear, it really does get better.

    Oh --a word of caution for anyone on Levaquin -- it can cause tendon damage, so watch out for any tendon soreness and call LLMD if that happens. A good drug, but not without its risks...

  5. kellyann

    kellyann New Member

    I went in to get a referal to see a neurologist. The nurse is going to call me tommorrow with an appointment. This is my egular primary care doctor that is on my insurance I went to see today. I wanted him to call in a prescription for zithromax, I have a prescription for it already at the drug store but it costs me nearly $300 to get it because the doctor at the FFC wrote it and my insurance won't cover it. Well he gives me this long lecture on how there is no reason to treat lyme disease with continued antibiotic theraphy. Finally, I told him, hey, I am going to get the zithromax regardless, can you please just call it in so I don't have to pay so much for it? You should have seen him bobbing his head like he was just shocked,jeez! He picked up the phone and called it in to my pharmacy. Then I showed him my arm pitts. He says the swelling is from shaving, asked if I just have to shave. I said, well yeah. Then I said I think some of it is in my lymph nodes. He told me that in-grown hair and swollen lymph nodes are the same thing,I said I think not. But by then I am tired of argueing and I just want to go home. Anyway, I did get my presciption called in, after a fight, and I am going to see a neurologist. I am off to the dermatologist tommorrow, I hope, if I feel good enough in the morning. My head is splitting I swear.

  6. minimonkey

    minimonkey New Member

    Swollen lymph nodes the same as an ingrown hair???? I think not! I've shaved all my adult life, and never had a cyst the size of a baseball happen... jeez, who is this guy?

    Glad he called in the zith, but sorry you had to go through that. Maybe the dermatologist will at least know the difference between a lymph node, a cyst, and a hair follicle.

    What are you hoping to find out from the neurologist? What sort of neuro weirdness are you having? Lyme can cause it in spades!
  7. victoria

    victoria New Member

    I agree, I hope the dermatologist has a better sense of what s/he is doing than that neurologist! Wish I knew of someone to refer you to in the Atlanta area - maybe the FFC might have an opinion as to who might be a better one if you need to go back to a neurologist?

    Thanks, I know about the levaquin Zoe. I hate seeing him use it, but I know it has helped a lot of people too, and it seems to be helping him with probable bartonella - he says he can tell it is doing something very positive cognitively.

    There doesn't seem to be treatment for lyme etc without some kind of risk, unhappily.

    Hope you find some relief from your headaches, Kellyann!

  8. kellyann

    kellyann New Member

    This doctor is my primary care doctor that is on my insurance. The only reason I haven't changed to a different primary care doctor is that usually I can talk him into doing what I want when it comes to rewriting prescriptions form the FFC doctor so that my insurance will cover it. That saves me a ton of money. He is really old and I think he is near retirement. You could have knocked me over when he said that about the in-grown hair and a swollen lypmp node being the same thing. He also went into this long lecture about how black men in the army in world war II were allowed to grow beards because their faces broke out so bad. Jeez. It was awful. He is also convinced that lyme disease only should be treated with one round of antibiotics, that long term treatment is unwarranted. I got so frustrated and tired. He brought out this big book and made me look up lyme disease in it. It was called Conn's physicians reference. It did say that long term treatment of antibiotics had shown no useful value, but it was probably written by doctors who did not have much training in the area. It was a very small paragraph in a giant book.
    I feel like sending the doc a ton of lyme literature, haha! I think he needs an education! I guess I really can't blame him if that is all he has been taught.

    I want to see a neurologist so maybe I can get a MRI to see if there is something going on causing these headaches. I can't live like this. I swear evey day I have a migraine. The topamax isn't helping, maybe I need a higher dose. My head is spitting right now.

    Zoe, I am so happy you can excercise! That is terrific! You go girl!

    Victoria, I hate you are having a herx and headaches too. I hope you boy doesn't herx too bad off the flagyl, that stuff is so hard to take.

    Mindy, You hang in there girl, you will get through this. I know it is hard. I hope you did get some medicine?

    Cindi, where are you?


  9. victoria

    victoria New Member

    I've read about that study that found long-term abx was not of help, but there have been just criticisms of it, I believe one was the abx were not used long enough anyway; other studies show it does... and certainly enough anecdotal evidence from LLMDs to warrant a further study under different conditions.

    Since your neuro is old, it probably won't make any difference if you do give him literature to read, sadly... altho it is still worth a try. We've kind of run into the same thing here with a doctor close to retirement we've known for a long time. I think at this point in their lives, they're not willing to stick their necks out, and I don't know that I blame them entirely given the political climate about chronic lyme etc.

    The major herx right now for my son is from the Levaquin - he took it 3 days in a row this week, and stopped for 2 days, he couldn't take the cognitive effects and friends even noticed he was hyper-irritable! For them to mention it, you know he had to be! He has also had extreme insomnia and jaw pain along with the 'usual' body aches.

    It seems he always gets a huge herx to the abx the first week, and then it wanes a bit over 2 weeks, and then the 3rd week adding in the flagyl causes another big herx.

    Last month with the combined effects of Levaquin and Flagyl was the first time he had to cut down to M-W-F with the Flagyl as well. Other than the very first month of treatment, I think this is the biggest herx he's experienced overall.

    It is weird in how differently people are affected by the abx and how the herxes occur - for some it doesn't take much to herx to, and others feel almost immediately better. I'm sure it has to do with genetics - that it takes hold wherever we're the weakest genetically.

    Hope you got some answers today!

  10. kellyann

    kellyann New Member

    The doc I saw was not my neuro, He was my primary care doc. I went to see him to get a referal to see a neurologist. With my stupid insurance I have to get a referal for everything. The old guy is my regular doc, haha! That med, Levaqthan(sp) sounds like some dreadful stuff your son is taking. Forgive my spelling, the brain fog has set in. I swear sometimes it is like I can see a word in my head, but can't for the life of me remember how to spell it, sometimes the simplest of words too. Like the word "Such" gives me fits. It scares me, I think I am losing brain function or something. I can't remember anything. My head hurts so bad -so constantly. If I turn my head either way it hurts in between(sp?) my shoulder blades. I called the doctors office back, my appointment is for July 26th for the neurologist. If my head doesn't explode before then.

    Thank you for being there for me!
  11. minimonkey

    minimonkey New Member

    Don't get me wrong -- Levaquin is a great drug for a lot of folks -- but it can cause real problems in a small minority. It can also whack out one's blood sugar/insulin response.

    Kellyann -- SOOO sorry about the headaches! I've lived with that kind of head pain, and it is beyond miserable. An MRI may be useful -- but don't freak if it turns out you have lesions in your white matter -- a lot of lyme folks do, and even migraines themselves can cause the lesions. I wish I'd had a baseline MRI done, though, so I'd be able to judge progress.... the lesions do heal with treatment, usually.

    Have you tried amitriptyline (elavil) for migraine prevention? It works pretty well for a lot of people. The memory loss/cognitive dysfunction may be partly from the Topamax -- it is known for causing cognitive problems, particularly with language. I had to go off it for that very reason!

    Those headaches really sound like babesia to me -- at least they sound like the ones I had that disappeared almost completely with starting treatment for babs -- after many years of having them regularly. A muscle relaxant might help you, too -- it can help relieve the neck tension, anyways.

    Hope you are all feeling better soon!

    OH! I am SO SORE from working out -- sheesh am I ever out of shape!
  12. kellyann

    kellyann New Member

    You may be right about the topamax, and the language, except I have had problems even before I started taking it. It probably makes it worse though. I will talk to the neurologist about headache meds when I go July 26th. I swear it feels like my brain is going to come out my eye sockets sometimes, not a pleasant feeling.

    Zoe I am so happy to hear about your excercise. Don't over do it! You are going to get so fit and healthy! Wonderful!

  13. minimonkey

    minimonkey New Member

    Kellyann --

    Yeah, Lyme can cause the language problems too -- no doubt about that. I think probably the Topamax isn't helping, though...and it sounds like it isn't doing much for your headaches, either.

    Glad you are going to talk to the Neuro about headache relief. I've found that the migraine meds really help me most of the time, though if it is actually meningitis, they don't do much. This could be a herx-type reaction from treating the babs -- seems that some folks herx up a storm, and others (like me, thank G-d) just experience relief when treating babs. I'd ask your neuro to consider meningitis/encephalitis type stuff when doing the exam. There is a myth that Lyme meningitis/encephalitis is rare, but actually the research bears out that it is actually quite common -- sometimes in a full-blown form, sometimes in a more subtle, subacute way.

    I hope he okays the MRI -- I'd be interested to see what it shows.