ive been in treatment for a year now, and in some ways i am better and in some ways i am much worse.
over the past few months, i have developed some new sx that are not very fun.
i am going to see dr h in hyde park in april to get a fresh perspective, anyone have good expericne with this dr? i have heard many great things.
i am feeling discouraged with abx at this point, as they dont seem to be doing much for me.
if i were to stay on them, i guess id consider iv, but my dr mentioned vanco which i know isnt the best idea.
i just dont know what to do. i am in more pain then i have ever been before, neuropathy everywhere, especially in my back.
thanks the lord i have neurotonin and pain meds, i am frustrated though, because i feel lost on this journey right now.
i think to myself im only 25 and HAVE to get better eventually right?
it seems the good lord is holding me in this place, for a reason that is escaping me still.
i would ask again for prayer for myself and my wife, and to give us guideance as to what we should do next.
my tx has been wide and comprehensive, so this is where the confusion lies.
it is very difficult soometimes being so young and being disabled.
i have been sick since nov of 06, and i know compared to a lot of you very brave people, this is not very long. i am sorry in advance for complaining for i know your suffering far surpasses mine.
in short, in anyone has any insight, here is my tx
1 month oral ceftin 3 months iv roc w hbot, tindi, and biaxin 3 months mepron & zith 2 months iv doxy 3 months levaquin (made HUGE gains on this) 1-2 months biaxin w some diflucan pulses
now heres the interesting part. AFTER levaquin tx stopped, i got much worse. i also did some hbot dives at this time, which sent me downhill too (not knocking this, just stating what happened)
now the last 3 months i have developed neuropathy, severe pain all over my body, along wish my usual
pain & pressure in my head loss of sensation in my limbs derealization stiff & tight neck cognitive disfunction pain in all joints and shins memory loss cant think for $hit burning and throbbing foot pain burning rib pain burning brain sensation ear pain visual disturbances chest compression air hunger tremors body jerks and muscle twitches
the list goes on & on....
im just at a loss as to what i should do next.
right now i am on zith and plaq, which doesnt seem to be doing much.
another interesting thing is i have been told not to take magnesium as i have bartonella, which i am unsure of either.
there are SO many different ways to go about everything, and at this point i am leaning towards just going off abx and trying alternative stuff.
one good thing is that i have started ondamed which temporarily helps.
up until this recent regression i had a plan, and good protocol (or so i thought) and now its like evrything kind of fell apart.
the most prominent symptoms are the neuropathy and that everything just hurts.
all my muscles ache, my bones, etc.
im taking glut, chlorella, and ala for detox, and am unable to use the sauna as it makes the neuropathy worse.
thanks for letting me vent here guys, this board has kept me going for the last year and i thank you all for your advice and support.
there is a light at the end of this tunnel, i just need to get on the train that leads out of it.
much love
derek
Posted by sixgoofykids (Member # 11141) on :
Derek, I'm so glad you're going to see Dr. H!!! He is who made me better!
I'm guessing you were undertreated for both babs and bart because you still have babs symptoms and you declined again after you stopped bart treatment.
Dr. H is willing to treat both of those concurrently.
Plus, he is well-versed in herbs, so you can also include as much of that as you want. I've been doing very-well under his care.
You will be in good hands with Dr. H and he can help you find that train. Most of the people in his office (including him) have had/have Lyme, so they all know what you're going through.
Posted by Sparrow (Member # 11734) on :
Sorry to hear you are feeling so bad. My daughter is 24 and has been sick for a long time, so I know how discouraging it can get for everyone.
She has gotten better a couple of times and then gotten much worse suddenly. The first time it was on a diflucan protocol and the second time she got steroids mixed in with some pain injections and it took months to figure it all out.
My only suggestion is to have your vitamin d levels checked. Just had my daughters checked and they were so low I was shocked. She herxes when I give her a supplement now. Sunning would be the best, but her eyes are so light sensitive she can't now. There are 2 levels to check so ask your dr to order them the next time. Do a search on vitamin d and you will see how much it contributes to your health.
Hope you feel better soon. Sorry I can't help more.
Posted by LaurenTurner (Member # 12320) on :
Hi Derek!
Sorry thing aren't going so well.
I don't usually reply to people's posts because I don't have the much information to offer.
However I felt like I should reply to you. I feel a lot like you do. I am young (22) and feel very confused and lost these days. I just want to get better and it seems impossible at times!
Maybe if you were doing so well on levaquin you should get back on it. It might just take longer to erradicate the bart, if that's what you have.
Just a thought.
I hope you get through this bump in the road soon... and can start seeing bigger improvements that last!
Hugs, Lauren
p.s. I really like the quote in your signature. Posted by map1131 (Member # 2022) on :
I hope you get your answers and a new perspective soon derek. I know someone that went to him once or twice after she had been a Dr B patient for a year or two.
She was in love with Dr B. So nobody could compare to Dr B. Last I talked with her, she wasn't able to follow Dr H's protocol.
I need to call this lady and check in with her. See if she's hanging in there?
Pam
Posted by djf2005 (Member # 11449) on :
thanks everyone for your responses, they mean a great deal to me.
my vit d level is ok, i recently had it checked.
i really suspect i have a lot of bartonella involvemnt, but i am unsure if levaquin caused damage to my body or not.
i am seeing an ortho tonight who will hopefully be able to tell me if my knee pain and such is from the drug or not. it started on it and has just gotten worse. i would LOVE to go back on it but i am scared at this point.
i am excited about seeing dr h, i am glad he has helped you six goofy.
thanks again for your responses, i appreciate all the advice and support.
Posted by kelmo (Member # 8797) on :
I think bart and babs, too. It sounds very much like my daughter.
Vitamin D3 is still good to take. If you herx at 400IU after four days, you are deficient.
Hopefully a new perspective will help.
I would recommend the Fry blood smear, if you can afford it. Stay of abx for at least two weeks, then get tested.
WHAT IS IT WITH THE SPINE? My daughter's last big symptom is spinal involvement.
Posted by EyeBob (Member # 12572) on :
Derek,
I'll not comment directly on your situation except to say this....when I feel down and out about Lyme and lyme-like illnesses, my LLMD will remind me that he can always get me back to where I've been at my best. I'm told to stop and think about what my best point was with my treatment adn whatever it was, I will at least get back to that point.
So chin up. You have at least that to look forward to (we hope).
BT
Posted by lymeflox (Member # 10543) on :
djf2005:
I am also very sorry for your suffering. As others have stated that your current situation is due to bart and recommended you to start taking more levaquin, I would like to suggest you to evaluate the whole situation and take your own decisions carefully.
I had an apparently similar reaction. I got big gains while on levaquin, due to its powerful anti-inflammatory effect, and the bactericidal action and got only relatively minor knee pains (and one ankle too). But some weeks after ending the treatment, and levaquin was the only drug or supplement that I took in almost two years, i developed multiple symptoms of delayed toxicity.
I had all the symptoms that you have listed, and many more that arose over the following months, until I came to a point were life was almost unbearable, specially due to the constant pain, stiffness, neuropathies of every kind, and brain damage.
Your case, my case, and thousand's other cases are all almost identical in terms of symptoms and timetable but that does not necessarily mean that you are suffering from levaquin toxicity, because other disorders share many of the same symptoms.
But having known of dozens of similar cases, I would not discard the possibility of having a levaquin toxicity.
The problem is that you are not going to find a doctor that knows enough about levaquin toxicity, and even less that acknowledges that your acute symptoms can be caused by levaquin after ending the treatment. That is the current level of ignorance about this issues of the mainstream medical class. Nevertheless, there are some doctors at research university centers that are specialized in fluoroquinolone toxicity, and perhaps your own doctor could call them if you want him to.
To have more elements to check out your symptoms and to help you to rule out a levaquin toxicity, you could consult the two reference web pages set up by victims.
I wish that you are not suffering a toxic reaction and that in any case you recover soon.
Posted by sparkle7 (Member # 10397) on :
Hi Derek. Wishing you all the best.
I know what it's like to go through a bunch of treatments & not really get anywhere or be in worse pain then before. It's very frustrating...
I've had Dr. Buhner's book (Healing Lyme) here for a while & I just started really reading it today. I'm having excrutiating back pain & I had to just lay around all day.
It's quite informative about the whole process of the spirochetes, etc. I'm not a doctor or scientist but it just seems that abx may not be the answer. The spirochetes are very complex & can evade many of the abx. They either change form or burrow into places that the abx can't reach. It seems that you've really tried alot of abx. Sometimes we can feel better but that's just because the spirochetes went into cyst form. They can re-emerge later & be more virulent.
I haven't ruled out abx, completely - it's just that they may not work for everyone.
I hope you can find a good protocol that will help you.
Sometimes it helps to know you aren't alone. Many of us are dealing with the same frustration.
Posted by timaca (Member # 6911) on :
Derek~ Were you tested for viruses? Please see thread on "viral testing" here at Lymenet. It's on page 1 at the moment...
Best, Timaca
Posted by djf2005 (Member # 11449) on :
thank you all for your responses.
i honestly dont know what to do.
half of me wants to go back on levaquin and
the other half is screaming not to.
i will think this over. this disease is disgusting.
much love to all.
derek
Posted by djf2005 (Member # 11449) on :
timaca yes i was and i have high, very high igg titers for cmv.
i was on valtrex for a few weeks and then my dr stopped.
thats also an option, to quit abx and take anti virals.
who knows. ducks cant tell me how to fix myself, llmds cant tell me, its all one cluster!@#%
please forgive my attitude. Posted by djf2005 (Member # 11449) on :
lymeflox-
what universities are these dr's at that will speak with my llmd about levaquin toxicity?
how do i get in touch with them?
thanks
Posted by djf2005 (Member # 11449) on :
not exactly sure, id say about a month, maybe 6 weeks...
i was regressing, then i went and did hbot (only 2 dives) over the course of 2 weeks.
after the 2nd dive all hell had broken loose.
i know what a herx is, im used to them, this isnt one...
Posted by trish4 (Member # 14156) on :
I see Dr. H as well and am very confident that we will make me better as I feel I am finally treating these things aggressively enough. I can relate to being so young and being disabled. I, myself am 21 and still have so much to do. I h ave only been in treating with Dr. H for a couple weeks now but will keep you posted.
Posted by timaca (Member # 6911) on :
Please make sure that you are tested for HHV-6 and EBV and VZV and HSV-1 and HSV-2 at Focus Lab. Since CMV is high, these other viruses could be high too.
Best, Timaca
Posted by Clarissa (Member # 4715) on :
Have you tried Choletyramine for Detoxing?
You can get sugar free capsules at a place called Lionville in PA. Your doctor has to call in the RX.
I take the 600mg (six at at time, approx 4X a day if possible). Its helped me tremendously.
Hang in there!!
Posted by Clarissa (Member # 4715) on :
my typing is horrific today!
Cholestyramine. SORRY!
Posted by djf2005 (Member # 11449) on :
yes thank you for the reccomendation, my one local llmd actually just started me on it.
i am seeing no change yet, but its only been a week i guess.
Posted by CD57 (Member # 11749) on :
Sounds like you will be in good hands with Dr H. I hear he has gotten a lot of people back to the land of the living.
Eyeballing your symptoms, I would agree that you need to look at BART and babs again. Bart is a huge problem and a reason why a lot of people don't get well/relapse, the LLMDs are finding. It is a nasty immuno-suppressive bug. We need our immune systems to help us out in this fight!
Posted by David95928 (Member # 3521) on :
Derek, how long do you think you have been infected? The reason I ask is I think that new versus entrenched (chronic) infection sometimes calls for different approaches and priorities. With a new infection, it seems you have a much better chance at cure, all done. If it's chronic (over one year, according to my doctor), on the other hand, effective management may be a more realistic goal.
Having gone at least twelve years years undiagnosed and having gotten very, very sick, I am content, no pleased, with effective management. In reviewing the meds you have taken, I didn't see the Bicillin/macrolide combination that many here have found to be very effective. Having started on this combination, I can't compare it to anything else but can say that my recovery has been very stable for five years, while I have watched a lot of Lymenet people have setback after setback. It seems to me that this protocol is not cure directed and instead s directed at management.
The other thing you may want to consider is basic supplememtation, based on Dr. B's treatment guidelines. He notes that many/most lymies are depleted of B vitamins and magnesium, and that sometimes oral supplementation is ineffective. I take all of them IM, PRN to very noticeable positive effects. Also, my personal observation is that it seems that virtually all male lymies. young or old, have clinically depressed testosterone levels, which can cause all kinds of symptoms just by itself.
I'm sorry you are having such a frustrating time and hope my ideas may be helpful
Posted by lymeflox (Member # 10543) on :
djf2007:
Answering your question, the doctor that has the best knowledge about fluoroquinolone toxicity and has seen many people is David FLOCKHART, at Indiana University. You can find his address and telephone number on the web page of the university.
He can see you, but it is far easier that your doctor speaks with him over the phone.
Other doctors with a deep knowledge are J. Cohen (he has a page www.medicationsense.com) and many european doctors. I do not know all of them.
When you evaluate to take more levaquin soon or not, you might discern first whether you are suffering a toxic syndrome, because in some cases, if people take more levaquin the injuries caused are irreversible, most of them neurological, as the package insert states and I can tell you for sure that it is not pleasant to suffer from many sort of neurological injuries and neuropathy pains for the rest of one's life.
It is much better to suffer a straight intolerance, like a rash that experienced another fellow lyme sufferer recently, because that always prompts to stop the treatment and you can recover, than to tolerate the levaquin well and be fine while on it, because afterwards (months after) it can happen nothing bad, but if it does, it is too late, when one has ingested too much.
I suggest you to be aware that fluoroquinolone toxicity does normally surface some weeks or months after ending the treatment. There are very few people that withstand a 3 months treatment of 1 gr/day of levaquin without having important injuries during the year after, but they do exist, so there is a chance that you do not suffer a toxic state and your current suffering is due to something else.
I deeply wish you the best, no matter what option you take.
Posted by WildCondor (Member # 434) on :
Stay on all your meds and keep a symptom and medication diary. bring all your records to Dr. H and you will be all set and in excellent hands. Hang tough til then!!!
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