My son's LYME: treatment change... for damz68, other 'lymies'

Discussion in 'Fibromyalgia Main Forum' started by victoria, Mar 28, 2006.

  1. victoria

    victoria New Member

    Just to recap -
    We had tried to look for a 'lyme friendly' MD here who might back up IV abx to try, but couldn't find one...

    So my son ended up off all abx for about 4-5 weeks while we were trying to find a doctor here to back him up doing IV abx ( he was told to stay off all abx since he had to be clear for at least 1 week of orals before starting IV)

    His ‘regular app’t” was last week, talked it over at the clinic, they were familiar with research that showed it took 18 months for oral or IV abx to penetrate cellwall form of Lyme, and okayed our decision to stay with oral abx for the moment...

    They also however continue to feel he has a coinfection altho the tests for the most common ones show negative, due to the immunocomplexes in his blood (don't understand that part yet)...

    As he does break out into sweats day or night for no reason (and is an 18 yo male!), they suspect babesis, similar to malaria and causes similar symptoms. And same drugs are used. (What is weird is only his head sweats, not the rest of his body... so strange!)

    Damz68 --I read where you felt none of your treatment had helped and were about to go off all abx and see what happened... granted my son has only been on oral abxs for 9 months, but --

    During this time, he was steadily growing more and more fatigued, really noticeably so the 3rd & 4th weeks off...

    so I guess that alone does tell us that the orals are doing something. We'd told him to start them again after reading that Townsend letter and him telling us that.

    So he is to finish up this week, is this week getting something of a 'herx' with the flagyl added (btw, depression is something that shows up when taking Flagyl if you're prone to it), so again, the meds apparently ARE still working -

    -- then next week off all meds --

    then he starts on protocol for babesia to see what happens.

    The clinic also told us that treating Lyme for a while and then treating any coinfections, then going back to treating Lyme, is how they've done it with IV treatment, and sounded like they are applying this now to oral protocols as well... at least she made it sound 'newer'....

    Sorry if this is rambling, but have a major sinus headache today and ran myself down yesterday trying to get house looking nice for realtor's pics for online!

    Anyway, the more I read, the more I feel overwhelmed by what Lyme is/does... it is a really nasty critter! Somehow missed before that, in simple terms, it can insert some of its own DNA/RNA? into its cell wall, twist it off to form a 'bleb', and let it circulate in blood... researchers not sure why but they suspect it is to get our immune system to attack the bleb and leave the actual spirochetes alone...

    ALSO, I was reading thru some of the articles at Townsend Letter site, the beginning of one really really angers me at the CDC and our media... will put it in a separate post tho...

    all the best,
    Victoria[This Message was Edited on 03/28/2006]
  2. karinaxx

    karinaxx New Member

    just got the bloodtest back from my son and he showed positive for borelia.
    i am letting him tested for mycoplasma also now, since i showed positive.
    i feel overwhelmed also, this means more testing and flying to the next specialist , because here is none which is informed about this.
    Our GP her is finding us an infectious desease specialist in Bombay!
    My son is nine years old and is in my opinion sick since he is very small. Nobody believed me and doctors in Switzerland just made routine test, though i had a list of serious symptoms.
    There is something realy realy wrong with our medical system!!!!
    what tests did your son take and how many befre he was deffinitly dx with Lyme?
    wishes karina
  3. victoria

    victoria New Member

    SO sorry to hear about your son! Only 9, that is such a shame!

    We had just had a regular blood panel run initially (which showed nothing wrong), our son had low Blood Pressure, low pulse, he had lost weight (was skinny anyway) and experiencing major fatigue, 16 hours of sleep, migrating aches/pains...

    same as I have only worse for him actually, his arms/legs also go numb while asleep, even when blood pressure cuff is put on, also has carpal tunnel symptoms in both hands, pupils of his eyes dilate for no reason, saw 'floaters' for as long as he can remember.

    Anyway, we screened him again for hemochromatosis, an iron overload disorder that is considered probably hereditary (My MIL has it) hoping that was it, as treatment is easy. You just give blood til your iron levels drop! but it was negative too.

    Anyway after my own response to an experimental protocol (marshall protocol) and seeing others get diagnosed for Bb, I figured it was a good chance he had it since we live in the country.

    He had the western blot etc. thru IGeneX testing, it was positive; also tests for the 5 most commonly in this country associated tickborne disease, babesia, ehrlichiosis, bartonella, blocking on names of others right now, plus mycoplasma, they keep coming up negative.

    So it was not that long for us to get a diagnosis for him, but only because of timing. Treatment will be as controversial as getting a diagnosis without having had a rash, I'm sure you know, unfortunately.

    The doctor my son is seeing is in another state, but I was told people come there not only from across the US but also from Europe including Switzerland...

    so I think that's an indication (or should I say 'indictment'!) of the medical system in the entire world!

    Keep in touch!

    All the best,
    Victoria
  4. karinaxx

    karinaxx New Member

    well, it does not look good our situation.
    contacting all docs now i have been in contact because of cfids and will see the response.
    anyway, keep in touch
    karina
  5. neen85

    neen85 New Member

    I am currently without a GP because the last one played along with the lyme DX until he did the initial blood work for new patients and got a few visits in (beginning of the yr.),then informed me that I was mentally ill because he didn't believe in lyme disease.

    What a jerk. I just haven't gotten up the nerve to try again! I can't imagine going through it with children also! Daneen
  6. victoria

    victoria New Member

    You are in SE Kansas? There is supposed to be a Lyme-literate MD in Springfield MO, have you tried going there?

    Also, did you read the Feb-Mar '06 Townsend Letter's article about Lyme? You can also look at their archives... all for free.

    Can't remember if it was there or where, but somewhere there was also a list of specific supplements that are helpful for the body to fight the Lyme.

    In past 2 months I've heard of a 22 yo that died of Lyme - yes it was given as cause of death - because it wasn't figured out soon enough; another 18 yo who lost an eye.

    Average person spends $65,000 on trying to get a diagnosis before they get the test and/or are positive and get treatment...

    But don't give up hope... somehow the gov't has to get the message, and get the insurance companies AND medical doctors on the same page as the LLMDs... this is really devastating so many... I am working on letters not only to support our LLMD but also to my representatives.

    all the best,
    Victoria



  7. neen85

    neen85 New Member

    YEs,I go to that one in Springfield,but the problem is finding a GP that isn't afraid to have a patient with the lyme diagnosis. I have other problems,like a back injury I got due to passing out after taking a med I should never have been given and some fibroids.

    I have to have a doc that accepts Kansas medicaid to refer me to other doctors for special services.

    Yes,I recently learned that friends of mine in highschool had an Aunt that passed from lyme (she had it 14 yrs. and was on IV at the time),and a farmer from our area did. He apparently just got ill and died and apparently a seed tick had lodged in his bellybutton area and skin had grown over it. Got this info from a former HS teacher of mine who also farms in the area.
    The MOther of the twins I went to school with (the boys are deceased)told me of the AUnt's passing. She gasped when she learned that I had lyme. She said that is a horrible illness. She is an RN.

    So far I am not real impressed with the Springfielsd situation as far as treatment or progress. They also charge $6.00 any time you call a nurse for anything and you have to talk to a nurse for anything but an appointment!! IT is $3.00 for a Rx refill.....I found this out when the bad GP I went to sabatoged my Leiden factor clotting tests (to spite the fact that I had just lost my Mom from a clot)and had call to tell them that he had omitted them when he turned in my lab request and ask what they wanted to do.

    DOes your lyme doc charge for every little thing. Thing is,the last time I called,some nurse I didn't know picked up and there was dead silence when I asked each of my 3 questions and I got charged anyway!!! This guy claims to be a Christian and brings up Prayer etc. in visits,and he still charges for this!! I just discussed that I didn't even have enough food to eat on the last visit.

    I have heard of many people doing well with the salt and C protocol. One person,who is a friend of a friend of mine on this board had tried everything and nothing helped,(she also saw the Dr. in Springfield),and now she is out shopping several times a week and having a life!

    This is getting long,sorry to rant on,but I feel like I am getting milked and making no progress. They aren't really aggressive about helping when I have a problem and my life is just wasting. Soon it will be too late for me to have children...I turn 45 on 4/10. Thanks for listening Victoria! And thanks for the update on you and your son. I hope they will hit on something that will help soon and his progress will take an upward swing! Daneen
  8. victoria

    victoria New Member

    No, as far as I know there are no other charges... I have called to ask questions, and I have had to get some papers faxed to me, and there was no charge for that.

    Hmmm, there was a charge for something last Fall, but it didn't strike me as mercenary, but for life of me cannot remember what it was for.

    My opinion is that when son's doctor found out we were having to pay out of pocket for his treatment, he tries to code differently and we are actually paying less for some appointments... app'ts with him or NP usually do run 30-45 minutes or longer as well, so I am well satsified that they are listening and answer our questions as well.

    I've heard of th salt & C protocol... I am doing the Marshall Protocol and do think it has helped me, even tho I haven't spent the $$ to get tested; I know others it has helped as well who did have a concrete dx of Lyme.

    It is SOOOO frustrating tho that still there is nothing that really helps everyone, that knowing WHAT one has doesn't make it any easier to treat! (Plus of course the probability of co-infections and inadequate testing for them only complicates it all.)

    My son's doctor said that this is cuz Bb has differentiated into over 100 variations, so different ones respond to different abx... which is why I don't understand why some docs still just use minocycline, period.

    Research does show certain abx are needed for cell-wall form, another for the form without the cell wall, and the flagyl for the cyst form. . . did you try different abx, and were you doing 2 at a time with Flagyl added in?

    We've known people as long as 20 years ago who had Lyme, altho they were the 'lucky' ones as it was obvious with the rash, fever, etc... but it is also why I don't understand why it is not officially recognized here.

    My son's doctor was also interviewed in the CFIDS Chronical last summer about his views of the role Lyme plays with CF/FM.

    Well, keep on trying, that's all any of us can do; I know how you feel cuz that's the way the docs around here seem to feel, they just don't want to get involved in dealing with anyone who has Lyme it seems. . . I think because of the controversy. I am tired also of always finding myself in the middle of controversy every time I turn around... as if this isn't hard enough to deal with!

    all the best,
    Victoria


  9. neen85

    neen85 New Member

    Mine continues to charge me to death for things that I really feel should be included if you are a patient. I am sure I will get billed more because the hospital lost my MRI script last week.

    I would not be surprised if he charges ME because the radiologist felt he had to get the lyme doc on the phone and explain that he did not read elbow MRI's,since it took time out of the lyme doc's day.

    This guy knows that $20-$30 makes a difference for me at the end of the month food-wise. No wonder they are attacking lyme docs and saying they are just in it for the $$$....things like this don't help.

    I am glad your protocol is doing good for you. My doctor doesn't believe in using more than one antibiotic at a time. I had previously responded to flagyl given at 500mg bid for another problem. Have not responede at lower doses.
    Have taken another antibiotic that tore my stomach up so badly that it took forever to heal.

    So I really have gotten nowhere in 9 months with this doc. I called to ask a question and got no reply,so wasted another month. Still waiting for GB tests to come back and refuse to call down there and get charged again on top of the $12.00 charges+ I have already racked up in the radiology fiasco.

    Killing more time. I don't feel like I have any guidance with this guy at all! I have just wasted another year of my life with him and it is so very frustrating.

    As you said,this illness doesn't kill enough people that the govt has to take notice,so they continue to ignore it and we continue to suffer.

    Suz (from this board)and I are also looking into the recooperation salts too. If I don't hear back on the GB tests by Mon. or Tue. I may just start the salt and C on my own since I have no idea if it is safe to start antibiotics or not yet.
    Keep us all updated as far as your protocol and progress go. Daneen
  10. victoria

    victoria New Member

    You may ultimately want to go to Charlotte (where my son's doc is) or Mobile, there's another LLMD there but I don't know anything about him....

    I'm wishing for a 'magic bullet' to show up like penicillin was for syphilis spirochete, but I don't think it's gonna happen anytime soon.

    Some have reported good effects with that protocol (salt & C), but sadly again no one things works for everything...

    Please keep us all posted as to how you all do with it!

    all the best,
    Victoria
  11. neen85

    neen85 New Member

    I know a man who used to live here in my town that had lyme,but his was caught right away. He took early retirement,but is enjoying it on the golf course,from what I hear.

    I may try to call and see where he got treated. I still have not gotten results from the GB tests. They sent my clotting tests,but no doctors note or Rx or info on what to do.....guess they want you to call them and tack on andother $6.00+ bill,depending on the length of the phone call!. So another 4 months wasted here with the clotting stuff.

    I can't progress to another antibiotic or GB flush unless I know the status of my GB. I have decided to call radiology and have them fax results again to make sure Springfield got them along with instructions to mail results to patient.

    I may just cancell my appt. since I have not tried any other meds since last appt. I may end up in your neck of the woods...bet it is pretty out there!! Daneen
  12. neen85

    neen85 New Member

    Do you have any idea how many hours a day/times a week your son would do antibiotic therapy? HOw did you locate your current LLMD? HOw functional is your son at this point? Are you pretty stable yourself,or do you "have your days" still? If the lst 2 questions are too nosey just omit them....no offense taken! Daneen
  13. victoria

    victoria New Member

    Hey Daneen,
    Sorry it took so long to answer, I am taking a bit of R&R and went to Chicago to visit some friends, won't be back til next week but happen to be up and awake right now.

    Anyway... are you asking about how he would've been doing the IV abx? I can't remember off the top of my head, but if that is your question, I will look it up when I get back home. If you are asking about orals, he did 2 abx for 3 weeks, added in flagyl the 3rd week, and then the 4th week no meds at all.

    We found his doctor thru Lyme flashnet message board - they have a special section for it, people email you privately with names. Actually his doc is pretty well known I guess since before he got involved with Lyme he worked with HIV; I just met socially an internist who had heard of him AND had even heard of the marshall protocol, altho he was totally noncomittal about any opinions (no surprise, it was social).

    I feel my fatigue is gradually worsening altho arthritic tpe pain is still gone 99% of the time...

    son fluctuates wildly, there's no predicting how he will feel. However, when he'd quit all antibiotics while we were trying to find a local MD to back him up for IVs (you have to be free of orals for one week before beginning IVs), after about 3 weeks of no meds he said he was increasingly fatigued, unable to do much besides lay around.

    Hope you're doing well...

    all the best,
    Victoria

  14. neen85

    neen85 New Member

    I was in Chicago briefly to help an ex-friend take her son to Shriners. It looks to be a fun place to spend some time,especially if you knew someone there.....even more so if you were totally well.

    I would just love to see the Oprah show! I have been a fan since she first started! Thanks for the reply and I will talk more to you after you recover from your trip. Have a wonderful visit! Daneen