posted
Hi, I'm desperate for some good advice and so I'm turning to all you knowledgeable people...
I'm at a point right now in my treatment where I don't know if I'm on the right path or not. To give you a bit of background:
After suffering for two years with some bad symptoms (primarily muscle twitching/chronic wooziness), an LLMD diagnosed me with Lyme disease and Ehrlichiosis in April 2009 (Igenex results - IGG 4 positive bands). For several months, I was on Doxycycline and then later Tindamax/Flagyl. Those didn't help. Then I had a SPECT scan done and the results were vague:
"There is normal cerebral cortical perfusion. However, deep white matter perfusion abnormalities raise the question of underlying white matter disease in the absence of enlarged ventricles."
My LLMD started me on IV Ceftriaxone. I did 12 weeks with nothing to show for it. In fact, my symptoms worsened. Along with muscle twitches and wooziness, I developed chronic migrating headaches, head pressure/stabbing sensations, head burning and horrible malaise.
I retested with Igenex. This time the IGG results showed that I had 8 positive bands. The Ehrlichiosis titer, however, had gone down (1:160 to 1:80).
My LLMD and I started to wonder if I had more than just Lyme/Ehrlichiosis especially since I never exhibited a lot of the more typical symptoms associated with the disease (fatigue, joint pain, cognitive issues).
I went for a second opinion with Dr. R in NYC. He thought that perhaps I had other co-infections which weren't being treated. My LLMD, however, didn't think so since she thought that the Igenex results were pretty reliable.
Dr. R wanted to see whether any biofilms were present so I had bloodwork done and sent to Fry Labs for analysis. It showed that I had a "few."
I showed the results to my LLMD. She then spoke to Dr. Fry and afterwards thought that the best course of action would be to go on Fry's protocol to eliminate these biofilms, a regimen consisting of: Minocycline, then Biaxin and lastly Plaquenil.
Before starting this new protocol, my LLMD retested with Igenex again to see where my Ehrlichiosis stood. This time I was back to 1:160! She couldn't explain why...
Currently, I'm taking Minocycline but will soon be adding Biaxin to the mix.
My questions are the following:
- How do I know if/when to switch LLMDs? In 9 months of treatment, I've only gotten worse however I do feel that I get a lot of attention and that I'm really being "looked after."
- Can anyone explain these up/down Ehrlichiosis titers? (1:160 to 1:80 to 1:160)
- What's your opinion of getting treated for other co-infections despite testing negative for them?
- At what point can one say that antibiotics just aren't working and maybe other means should be tried? (e.g., Rife, Salt/Vitamin C). Have I been treated long enough with the right antibiotics to come to this conclusion yet?
- Igenex results indicate that I have Lyme disease and Ehrlichiosis (8 positive bands!) and yet I don't seem to have any of the most common symptoms (fatigue, joint pain, cognitive issues). Perhaps something else is just being missed????
I've got to get on the right course of action pronto because it's becoming more and more unbearable with these symptoms.
I appreciate any thoughts you might have.
Thank you, Ami
Posts: 57 | From Florida | Registered: Jan 2009
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posted
Imho you should have been improved at least somewhat with that regimen.
There is one combo which somewhat helped me after doxy (which did work for me though ) - ketek/bactrim (macrolide/sulfa combo). I am on bicillin now and ironically I feel worse than before . Its hard to tell with abx - sometimes they do make you feel like crap due to many factors (yeast/c difficile are one)
It seems like you have fairly agressive LLMD (IV). It doesnt look to me like abx wise you will find anyone better. I mean I bet if he did IV for you he would be probably willing to try any other abx protocol. So why change?
There IV tigecycline option I guess as a last resort, but if you had absolutely no improvements on abx I dunno if it will do anything
What ABX dosages did you run btw? and did you run flagyl while being on ceftriaxone?
quote: "There is normal cerebral cortical perfusion. However, deep white matter perfusion abnormalities raise the question of underlying white matter disease in the absence of enlarged ventricles."
Disturbing . what did your neuro said? Did you pursue any further neurological work up? Your symptoms are not really typical lyme. And it does seem like you have neuro problem
quote: What's your opinion of getting treated for other co-infections despite testing negative for them?
Isn't ehrlichiosis cured by short doxy course? I dunno frankly about bart/babs. The only drug for bart which I think is safe is rifampin and its not very great alone either
Did you run any viral labs? If you have high positive titers that direction might be worth exploring
Posts: 856 | From MA | Registered: Jul 2009
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posted
Hi, I was on Tindamax (500mg - 2x per day) for around 2 or 3 months before I started IV Ceftriaxone. While I was doing IV, I was on Tindamax then switched to Flagyl - same dosage. During the whole time, up until recently, I also took Doxy (100mg - 3x per day).
Regarding the SPECT results, my LLMD didn't know what to make of it. I saw a Neurologist way before I was diagnosed with Lyme but I never went back to him since. Maybe I should?
My LLMD wants me to get another SPECT test done soon again to see if there's been any improvement.
Yeah, Ehrlichiosis is supposed to be cured by a short doxy course, that's what's so puzzling.
To my knowledge, I've never run any viral labs. Do you know of any reputable ones? What should I be looking for/what should be tested specifically?
Thanks...
Posts: 57 | From Florida | Registered: Jan 2009
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Earprints, your symptoms sound a lot like mine. I've never had typical lyme symptoms like joint pain but do have general malaise, muscle twitches, floaters, and poor energy.
I will say that Dr. R is probably not the best choice if you do decide to go for another LLMD. I'm seeing Dr. R and have been getting no where fast.
Have you had a complete hormone panel done, including thyroid and adrenals?
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
Hi Lymeorsomething, yes, adrenals are being addressed. I'm taking Sanesco supplements to treat it. And nothing abnormal was found with my thyroid glands.
Posts: 57 | From Florida | Registered: Jan 2009
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quote: To my knowledge, I've never run any viral labs. Do you know of any reputable ones? What should I be looking for/what should be tested specifically?
EBV ,CMV, HHV,HSV, Parvovirus etc. Normal labs do most of them . You best google it or search those forums (Timaca has lots of experience ). I did not explore this area extensively my viral titers were not really high
In any case ask your doctors those same questions you asked here.
Now regarding alternative treatments, imho it cant hurt to take a break from abx and try something else.
It really sounds like a bad case since abx did nothing. Did you rule out everything else? I hate to mention rife (since I have no personal experience with it and I am personally skeptical about it ) but it seems like a popular last resort option.
Posts: 856 | From MA | Registered: Jul 2009
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posted
I think I've been tested for those virus, certainly EBV and that's under control.
Could side-effects to the antibiotics cause such severe head symptoms? The only side-effect I was aware of was a metallic taste while I was on Flagyl. I just assumed these horrible head symptoms were due to Lyme & Co.
Posts: 57 | From Florida | Registered: Jan 2009
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
For what it's worth, I've started a break from abx again. I'm entering the third week w/o abx and have been able to remain relatively stable. I've been loading up on immune support supplements as well as protein and vitamins.
It's good to run a round of Diflucan during an abx break as well.
Generally, I've felt more stable while on abx but have never improved substantially so I'm leaning more and more toward an endocrine cause for my remaining symptoms.
Of course, this opinion will change if I crash and begin to experience the onset of new symptoms.
Keep in mind thyroid tests can appear normal in the presence of low metabolic function. Check your temps. Measuring RT3 levels doesn't hurt.
Prints, good luck. Let us know how you make out. Your case is similar to mine it seems (except my MRI was normal a couple of years ago) so I'd be interested in knowing if you find a way out of this disturbing maze.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
Actually, my MRI was normal, as was my CAT scan. It was just the SPECT that was problematic.
Regarding RT3 tests, my LLMD doesn't think much of that test, but now I wonder since I have low temps, usually averaging around 97.3 or so.
Posts: 57 | From Florida | Registered: Jan 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Give Bactrim, Rifampin, Zithromax a try.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
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