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    Old 09-05-2008, 12:52 AM   #1
    PNo
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    are your treatments working?

    Are you guys ok?

    I had a heck of a past 5 months - but I can report that I am better than before. Haven't been on boards for a long while - that is how sick I got! Synopsis is I actually started kind of heart failure after we last I chatted. I got fluid around heart/lungs, very bad chest pain, pneumonia but I wasn't sick, muscle weakness, shortness of breath, racing heart (95 bpm and my normal is 61) etc., in addition to all that pain we last talked about, I was getting sicker day by day. They ran slews of tests to the tune of $$$$$, and I do not have Lyme., cardiac issues, cancer or real lupus. But of all things - I had a very severe Vitamin D deficiency and was having Systemic Lupus reaction to neurontin (very uncommon). Thrown in the middle they treated the pneumonia with Levaquin and I got to where I couldnt get up or walk. This was just before the black box warning came out on that antibiotic.

    I don't know why Vit D wasn't something checked in the beginning, but after my doctors were running into dead ends and getting frustrated and I was headed to Mayo, they ran one more round of tests adding tons of new things to check for to send with me and found it. I felt like I was dying for sure. It has been 10 weeks of treatment at 50,000 IU doses of Vit D and sure enough every week I got better. Now I am mostly back to "just" dealing with the spine stuff (just give me that knife in the back any time), and happy to just have that! My thoracic is improving and just got another injection. My neck - is my neck.

    I really hope to hear from you.

    NP

    Last edited by PNo; 09-05-2008 at 01:04 AM.

     
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    Old 09-11-2008, 07:03 PM   #2
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    Re: It's me Neckpatient - Braveheart07 and Monarog - treatments working?

    Hi Neckpatient,


    I am just so happy to hear about your improvement, what great news! Are you continuing to see improvement every week? I sure hope so. Vitamin D of all things; I have read that can really make a person ill - sounds like that was you. I hope that you have seen the worst of things and just continue to progress.


    Also...(my Lyme soapbox)...if you take a down turn...God forbid...just make sure you were properly tested and examined for Lyme and co-infections by a Lyme knowledgeable doctor and with the "right" lab (Igenex).


    As for me...I am plugging away, but still not feeling very well. I am 6 months into tx and unfortunately, any improvement is minimal, if any.


    On the positive, I have recently conversed with a doctor, new to my area from the East coast, seems very knowledgeable and I will see her next week. I think she will be changing up my treatment significantly and I am hopeful to see better progress.


    I hope Braveheart responds as it's been some time since I've "heard" from him too - I hope he is feeling better. I tend to spend more time these days on a more active Lyme board...but, I will definitely check back. Thanks for checking in...I am just so very happy that things are better for you and sorry you had to go through all of that. Take good care. Monarog

     
    Old 10-22-2008, 11:05 PM   #3
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    Re: are your treatments working?

    Hi M, were you dx with Lyme? I came across another post of yours in the spinal area, I have similiar issues as you had posted and attribute it maybe to a recent dx of stenosis to my c spine, but that would not explain some of my other issues...

     
    Old 11-28-2008, 04:16 PM   #4
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    Re: are your treatments working?

    Hi K2626,

    Yes, diagnosed (after 3 years of undiagnosed/misdiagnosed stuff) with Lyme, Bartonella, Babesia, Ehrlichia, Mycoplasma, not to mention some active viruses, messed up thyroid (basically the Lyme "poster child" like so many others here) ugh. I have been on various oral abx txs now for 9 months, what progress I've had is painfully slow and minimal. My symptoms are mostly all neurological and terrible; I'm sick of this disease - frustrated as you might sense here. I am no longer afraid of it, just tired and mad at it! I am hopeful I will see improvement, even if it's so terribly slow.

    I truly believe my cervical disc herniation was caused by these infections weakening my spinal area, guess I'll never know - but it was a completely spontaneous rupture. I'm sure you're aware Lyme patients have a higher tendency than the "normal" population for cervical problems. I know another Lyme patient who has had several surgeries on failing spinal discs...for me, I truly believe Lyme and company was the catalyst to my cervical rupture.

    I hope you're doing okay. I don't visit this board too much anymore as I frequent a more active board more often; but, I do really like it here and am grateful for the input and support I've found. Do you have Lyme? Co-infections? What are your symptoms/treatment? Take good care. Monarog

     
    Old 11-28-2008, 04:34 PM   #5
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    Re: are your treatments working?

    Hi there. My sx started as shooting/stabbing pains that jumped around--mainly fingers, hands, ankles, toes---usually being a random toe/finger etc...lasting anywhere from a second to hrs. A few days after the onset I noticed my foot would get tingly and sometimes feel as thought it were vibrating. A wk after I started to get very extreme joint cracking and popping all over my body. Then 3 months later non stop muscle fascilations all over my body everday, then followed by nerve pains and muscle pains. I have also had a bruise type feeling on the right side of my spine that is there every single day. I had a full mri or head and spine, showed slight DDD in my spine (not sure if its the exact area as my pain), and c spine stenosis. I am going to request another one of my mid spine w contrast--just to be sure there is nothing there causing these odd things, though not sure how that would cause joint cracks.

    I have had a full body bone scan, EMG, tons of blood tests. Finally sent my labs to Palo Alto and only tested pos on 31 and IND on 34 41 IGM. My LLMD thinks this coupled w my sx is enough for treatment. So on doxy now, I add zithro Monday then Flagyl. I retest in 5 wks, so if it is lyme it should show more + due to die off

    I have a hard time accepting I could have this and keep thinking maybe its something else missed, though I have had SO many other tests. This mid spine thing worries me as though its a tumor or something but I suppose the original mri would have picked that up?

    What bands did you test pos on?

     
    Old 11-29-2008, 09:08 AM   #6
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    Re: are your treatments working?

    Hi...

    Yes, I understand your worries, though I do think your MRI would have picked up any type of mass, which it sounds like it didn't, so that's good. I too went through so many tests, EMG/NVC (like you...so much twitching everywhere - which I still have), MRI's everywhere, bloodwork, cardiac workup (also have tons of palps), etc.

    My Igenex results sound similar to yours for Lyme though my co-infections were positive all over the place. My Lyme Western Blot was IGM + 34, 41(++), and IND for 31 and 39; my IGG was ++ 41 and IND 34 and 39. My LLMD says that 34 is so specific to Lyme - there's no other cause to make this positive on my IGM, along with my IND on 31 & 39 - also completely specific to Lyme....I guess this, along with my laundry list of symptoms, and the fact that I tested IGM + for Babesia Ducani, Ehrlichiosis and Bartonella made Lyme and company a pretty clear diagnosis.

    I have seen 3 different docs who are at least somewhat Lyme literate and all say this is my beast; I certainly sport a ton of the symptoms, nothing else has been found, so I am treating. I still wonder sometimes as my response to treatment as far as improvement is not great. My current LLMD tells me this will take a long time, as much as 2-3 years of treatment (or more) as I have so many co-infections and was infected for almost 3 years prior to diagnosis. It is completely in my central nervous system...I may have to go on IV in the next 6 months or so if I don't start seeing better progress. From what I read, that certainly doesn't guarantee improvement either, but it might be worth a try. I figure, what are my options here?

    My 80 year old father, who was on the same back country, brush busting hiking trip that I was several years ago, also had unexplained health struggles. Once I tested + for Lyme and company, he got tested. He tested + for Lyme (similar WB results as mine) and for Babesia....I guess at this point I am looking at the odds of whether we have it or not....living in a very NON endemic area (so they say, ha)....I have concluded that our diagnosis is correct.

    I totally agree that you should rule out everything you can. Just hearing your symptoms and results sounds pretty suspicious for Lyme (my understanding...band 31 and 34 are specific to Lyme). It wasn't clear to me, were you tested for coinfections? It is unfortunate that the testing is not more accurate. I, like you, went through my doubts and disbelief, still do actually....but what else is it then? I feel like there hardly hasn't been a Lyme symptom, when I read them, that I haven't experienced at one time or another. Do your symptoms wax and wane? My biggest complaint is my entire nervous system feels plugged in to an electrical outlet, hyped up, vibratory....I don't know how else to explain it; I hate it. I can deal with a numb tongue, numb feet, twitching, off-balance/dizzy....but the plugged in feeling is exhausting and miserable. I don't like the heart palps either, they kind of freak me out.

    Please keep me posted on your progress and your next tests. I have not re-tested since starting treatment, except for mycoplasma a couple of months ago, that came back +. I may want to redo the WB sometime in the future....though with all my crazy symptoms, I think continued tx is the best approach at this point.

    Sorry to be so lengthy....I just totally understand what you're going through, not fun. I hope you get answers or at least feel comfortable that you're on the right track (I really think you are). Good luck to you. Monarog

     
    Old 11-29-2008, 11:31 AM   #7
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    Re: are your treatments working?

    Thanks so much for your response Mona. ?

    I go back and forth as to what I feel is worst. For awhile I thought the twitching was the worst as for a bit it was out of control-literally hundreds every hour every day. It has calmed down some. Now the nerve pains in my feet are getting to me. It is like electrical wires going off in my feet. I dont like the tingling in my left foot either. Ha, guess I dont like any of it! The beaus lines all over my toes freak me out as I know that means there is something serious going on in my body per my google searches, and well of course there is.

    I was tested for 2 co infections and was fine, the LLMD thinks I have something that starts with a B so I am getting tested for that too.

    I am on doxy now, and will add the zith and flagyl next week. I wanted to slowly introduce the meds to my system, not sure if that was smart or not.

    I dont know how long I have been infected. If I think back, I have had really odd sx for at least 10 yrs....10 yrs ago all in one month I started to see white swirly dots (usually when outside, or against white backgrounds) non stop (still see these all the time), visual snow, ice pick headaches, migraines with auras, heart palps, and dizzy spells. With that, I wonder if I have had this for many yrs. and perhaps it just started to peak. I have no idea. The sx from yrs ago I just learned to blow off after being told I was fine by several neuros etc.

    I know what you mean by feeling plugged in. I described it as feeling like my blood was shaking. In fact, before all of this hit in June..I had this internal tremble I think begining in March, I was also feeling tired then and even went to the dr thinking it was my thryoid but I was fine.

    Its hard not to think maybe there is somethign else going on when I dont show a strong positive, just 31 and IND 34 41. I will retest and hope to have more bands show up so I can feel btr about my dx vs wondering if I have spinal cancer, or some other thing going on!

    This has totally taken over my life, its awful. I just want my healthy life back as everyone here does...

    Last edited by k2626; 11-29-2008 at 11:34 AM.

     
    Old 11-29-2008, 03:16 PM   #8
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    Re: are your treatments working?

    Hi,

    Yes...but the + you do show and the IND you have....are Lyme specific I believe. It will be interesting to see if more bands show after some tx.

    Yes, me too - like so many here, it's been all consuming. Funny how we can take good health for granted, then when the #$%*** hits the fan, yuck. What I will say...my progress is just so slow...but it's there - sort of off and on. I used to be on Lyme boards day in an out, just trying to survive....as you can see, I'm still on a lot (mostly a different board), but not as much as I used to be. What a way to track progress, huh?

    I'll keep checking in on this board as I would like to keep in touch on how you're doing, test results etc. I'm no doc....but, it sure seems like you might finally be on the right path toward diagnosis and help. I think most all of us with this crappy illness have a period of uncertainty, doubt etc. - especially when the testing is far from accurate. I also completely agree that other problems need to be ruled out, evaluated, that sort of thing.

    Best of luck...misery loves company....no really, I'm so sorry for your health struggles and that you too may be dealing with this junk, ugh. Take Care. Mona

     
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