Home Forums General Discussion 6 mos Lyme and cos treatment, baffled by increases

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  • #308500
    sunny22
    Participant

    Hi everyone
    I havent been in the group for a while. After being dxd with SD, i went on ap for a year only to find no improvement, drug induced lupus and the dreaded chronic lyme, 2 forms of babesiosa, mycoplasma, ebv, etcetera. I have been on Burascanos protocol for 7 months, 6 of those months in bed. My recent numbers came back, from August appt: Microti is down, Myco is down, but Duncani is up from 250 to over 1200! My c4a from NJH was almost 70,000 7 months ago, 6 weeks after tx, the c4a went way down to 6,500, now my c4a is up to 15,000+ I have been doing everything right, taking the meds, all the detoxing, etc, eating properly though my weight has dropped below 100 but i dont feel starved. I have mthfr so i am limited as to what i can eat.

    My question to you lyme veterans out there is there any possible reason why my Duncani is way up as well as the c4a? I havent been bitten by anything. And i have become OCD about bugs, Mosquitos etc, and being around other people’s pets. Any advice is appreciated. If this is normal, I’ll be happy to hear this too!!!! Thank you!
    Sincerely,
    Sunny

    #373483
    Maz
    Keymaster

    @sunny22 wrote:

    After being dxd with SD, i went on ap for a year only to find no improvement, drug induced lupus and the dreaded chronic lyme, 2 forms of babesiosa, mycoplasma, ebv, etcetera. I have been on Burascanos protocol for 7 months, 6 of those months in bed. My recent numbers came back, from August appt: Microti is down, Myco is down, but Duncani is up from 250 to over 1200!

    Hi Sunny22,

    From what I have read, B. duncani is a pesky beast and harder to treat than B. microti. It could be that it’s been holed up and now that you’re treating everything, the infection with B. duncani has been exposed? I don’t know and this is just speculation, but definitely something to ask Dr. M. on your next visit. When titres go up like this, it isn’t always a bad thing in other words…some people test neg for borreliosis until they start treatment and then the antibodies become highly positive later.

    My c4a from NJH was almost 70,000 7 months ago, 6 weeks after tx, the c4a went way down to 6,500, now my c4a is up to 15,000+ I have been doing everything right, taking the meds, all the detoxing, etc, eating properly though my weight has dropped below 100 but i dont feel starved. I have mthfr so i am limited as to what i can eat.

    The C4a number is a funny one…it’s worth reading the following study on this:

    http://onlinelibrary.wiley.com/doi/10.1111/j.1365-3083.2008.02191.x/full

    Lyme is a waxing and waning illness, so the numbers will go up and down for a awhile, but the overall trend will likely be a wavy, downward one. This lab has also been associated with mold exposure, so folks who are immunosuppressed by mold also have a harder time getting themselves back together with this complex set of infections and so concomitant treatment for mold might be indicated.

    http://www.survivingmold.com/diagnosis/lab-tests

    My question to you lyme veterans out there is there any possible reason why my Duncani is way up as well as the c4a?

    Pure speculation, but the C4a lab is a test for how hard the complement system is working to fight infection (lyme possibly with complication of mold illness). As borreliosis is said to more susceptible to abx attack at different points in its life cycle, the labs may go up and down depending on what is occurring in this regard.

    If this is normal, I’ll be happy to hear this too!!!!

    My C4a has wavered up and down, too, and I think this is perfectly normal and the treatment is working in the longer term if the overall trend is a downwards one. Might be worth keeping a graph of the labs you’re getting run at intervals so you can see how things are going over time. Also, it can take a couple years for the drug-induced labs to normalize…some revert to normal quickly, but ANA can take a good length of time to come down.

    So, this past month you’ve felt better and have been up and out of bed? If so, this is great news! πŸ™‚

    #373482
    sunny22
    Participant

    Thanks Maz,, i appreciate your response. Amazingly, the medicine, after 6 mos, gave me a negative ANA and SCL-70! A shocking result. I still have my sd issues but its nice to see the numbers gone from that. Still have joint and fatigue issues but fatigue not as severe. The doc had me try going off the Mepron for a month which is why i felt i had nenewed energy. But I’m a little nervous now and have started back on the Mepron. I continue with the Zithro, artemisinin, and the Babs 3 plus all the supps. I had him add tindamax last month as i felt it couldn’t hurt ( I’m sure there could be mold there). I continue to get different msgs from ppl that i am not hitting the bugs at the biofilm level, cyst level, and cellular level.. Can you confirm that i am? Or am i missing something?

    Thanks Maz for your expertise . Btw I did buy a q-link, one for everyone! It sounded like a good idea.

    #373481
    Maz
    Keymaster

    @sunny22 wrote:

    Thanks Maz,, i appreciate your response. Amazingly, the medicine, after 6 mos, gave me a negative ANA and SCL-70! A shocking result.

    Fantastic news, Sunny! πŸ˜€

    I still have my sd issues but its nice to see the numbers gone from that. Still have joint and fatigue issues but fatigue not as severe.

    Just goes to show that SD must have an infectious component when other abx (other than tetras) start doing the trick. Mino clearly has immune-modulating effects that are great for SDers, too…just that when the tetras can’t be used, for whatever reason, and other abx are trialed, this lends credence to the theory.

    The doc had me try going off the Mepron for a month which is why i felt i had nenewed energy. But I’m a little nervous now and have started back on the Mepron.

    As long as labs are being drawn regularly and everything is going okay then the fatigue is likely due to the body trying to metabolize all the medications and die-off (needs to be taken with a fatty meal, too, but you already know that).

    I continue with the Zithro, artemisinin, and the Babs 3 plus all the supps. I had him add tindamax last month as i felt it couldn’t hurt ( I’m sure there could be mold there). I continue to get different msgs from ppl that i am not hitting the bugs at the biofilm level, cyst level, and cellular level.. Can you confirm that i am? Or am i missing something?

    Dr. M. is pretty well-versed in all the ways Lyme needs to be hit and likely has you on some supps, like biozymes (systemic enzymes) and other things to do some biofilm busting. The Artemisinin Essentials is also compounded with EDTA which is a biofilm-buster. Tinidazole has been studied for its cyst-busting/round body props. You have a pretty comprehensive protocol there with just the meds…can you do a signature line with all your meds and supps, Cindy? Might give a better idea of what approach the doc has going for you to see the supps, too. I wouldn’t worry too much about all the mixed messages you receive from others, because every patient is unique and the experienced LLMDs approach treatment in a methodical way, changing things up over time. Doing too much at once can be detrimental, too, and comparing someone’s health situation with someone else’s is not a very helpful thing to do – it can be like comparing apples and oranges, if you know what I mean. πŸ˜‰

    http://www.mdjunction.com/forums/lyme-disease-support-forums/studies-research/2710311-eva-sapi-articlebiofilmsantbiotics-may-program

    Btw I did buy a q-link, one for everyone! It sounded like a good idea.

    Haven’t used one of these Sunny….is it for EMF reduction?

    #373478
    sunny22
    Participant

    Hi Dr M recommended q-links because my daughter had horizontal dents in her thighs from Emf caused by computer. iPad, etc. I also had one. He said his whole family uses them. I went online and got them on sale . They also have a 90 money back guarantee. You hear it around your neck. It creates a 7 foot force field around you to protect you from EMF’s in the environment. EMF’s have always been a concern for me over the last ten years or so. The web i think is q- links.com. I need all the help i can get.

    #373479
    sunny22
    Participant

    Oops, i meant Takasumi, not tindamax. I will try to figure out how to add my meds on here. I think i tried. Once before and messed up. I am sure it. Is simple.

    Yes the neg ana and scl 70 was quite surprising to the doc too. Def proves the infectious theory I think. But i wish the symptoms would leave soon! Thx again for your help and explanations !

    #373480
    lynnie_sydney
    Participant

    I will try to figure out how to add my meds on here

    sunny – click on user control panel, above left. Then click on profile and go to ‘signature’ box and add in the information and click on submit. There is a 250 character limit (includes spaces) so summarising is good. You can update this info any time by doing the same πŸ˜€ πŸ˜€

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #373477
    Maz
    Keymaster

    @sunny22 wrote:

    Oops, i meant Takasumi, not tindamax. I will try to figure out how to add my meds on here. I think i tried. Once before and messed up. I am sure it. Is simple.

    Yes the neg ana and scl 70 was quite surprising to the doc too. Def proves the infectious theory I think. But i wish the symptoms would leave soon! Thx again for your help and explanations !

    Sunny, please don’t miss Lynnie’s post just above to create a signature.

    Ah, yes Takesumi…I’m on that, as well…great toxin binder for the gut, but it’s definitely different from Tinidazole/Tindamax. When you switch out from Mepron, it might be a good one to ask him about trying. πŸ˜‰ I know you have specific concerns about your stomach, so perhaps he is using abx right now that you can tolerate in this regard and trying to heal that?

    I have no doubts that EMF cause us problems. My husband, who is constantly on his cell for work, developed parotid cancer in his early 30s, a cancer rarely seen in anyone of that age. I later learned (Chinese study) that cellphone EMFs have been tied to this type of cancer and he has since used earphones. We are surrounded by EMF (wireless radiation) waves these days…it always amazes me just how quiet the house is during a power outage! I’m not sure why folks find it so hard to make the connection between cancer and EMF…tests they use for detecting cancer (CAT scans, for instance) or any type of radiation to the human body can create a raised risk and even dental X-rays have been suspected to cause thyroid cancer. I think a lot of people think what can’t be seen by the eyes must be all woo-woo or something, but when our immune systems are already compromised, it just makes sense to limit radiation exposure (she says while replying on her laptop!). πŸ˜‰

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