I still don't have any real change in my popping symptoms. I've also had a couple of doctors locally tell me that the antibiotics I'm taking are dangerous over time and that they don't believe I have Lyme. No surprise there but I can't say that it doesn't cause doubt for me.
Question for the board...if I missed a dose for a day and a half, am I okay? I assume it is okay, but just asking others what they know.
I'm discouraged that my symptoms have not gotten better. I still have popping in all of my joints and my back is particularly bothersome this week. I have difficulty lifting anything over 20 pounds b/c if feels like I'm going to pull my back out which has happened twice this year resulting in weeks of limping and pain.
When I stepped out of my vehicle today, my lower pack pops and shifts. It's constant all the time.
I'm considering stopping treatment if I don't receive some benefit soon. My LLMD did another western blot on my last visit and I actually had less bands come up positive. I was actually hoping the treatment would have stirred up the Lyme. As you all know, it costs me so much money for the antibiotics, trips across the country, and a $300 doctor visit every time I talk with my doc.
I need to see something to give me some hope.
I've had some great help and advice from a few different people on this site. But the mystery of my popping continues to be a major source of stress and anxiety along with the costs of treating it.
Sorry for the rant. Just sharing. Has anyone seen or heard from SacredHeart in a while?
Posted by poppy (Member # 5355) on :
So is it just the popping that has not improved? Is that your only symptom? Has anything else improved? Are you being treated for babesia? Looked like you have it, from your original post.
Posted by Spiritwalk (Member # 46032) on :
My other symptoms are food intolerances (which makes the popping worse with wrong foods). I'm down to just a few foods I can eat. No gluten, no dairy, no tomatoes, virtually nothing packaged, no eggs, etc. I can't even eat celery or broccoli.
I still have a lot of fatigue. But I've never had any symptoms that effect my ability to think or make decisions. I suppose I'm more foggy due to fatigue, but nothing has changed since I started the antibiotics in July.
Posted by poppy (Member # 5355) on :
Have you been on the same ones the whole time? Hard to tell sometimes when a switch should be tried, or IV. Depends on the severity of the symptoms for IV.
My joint popping responds to lyme treatment.
Someone else will have to speak to the fatigue since I never had this.
Still no info on babesia from you. Getting treated?
My food intolerances seemed to be associated with the effect of antibiotics on the gut. Just making some assumptions here.
Posted by Lymetoo (Member # 743) on :
Maybe you should look into the possibility of Mast Cell Activation Disorder, Salicylate Sensitivity, or Histamine Intolerance.
Posted by Spiritwalk (Member # 46032) on :
My food problems started when all my pain began, well before antibiotics.
Would you the mast cell and other conditions you mentioned be Lyme related.
poppy, how long before your popping began to go away? Can you explain how your joints pop and which ones?
Posted by poppy (Member # 5355) on :
many joints....hip, arm, knee popping
this happens when my lyme is inadequately treated
gets so bad that sometimes i hobble around on painful hip joints
other joint issues involve itching and bone spurs building up. these spurs do not go away with treatment so important to jump on it when itching starts
lyme can cause "bells palsy of the gut" which i suppose can also be called gastritis or gastroparesis
Posted by poppy (Member # 5355) on :
I don't feel we have enough information to comment on your progress intelligently.
Posted by Lymetoo (Member # 743) on :
Yes, Lyme disease can cause MCAD and food sensitivities.
Are you only on antibiotics? Killing the bugs is only one part of it. Detoxification is also very important. Fixing the systems that the Lyme damaged is another critical part. For example, the fatigue could be due to adrenals or thyroid problems, both of which can be triggered by Lyme.
Posted by Judie (Member # 38323) on :
What antibiotics are you on?
If you're on a fluoroquinolone (cipro levaquin, avelox), that can cause popping joints too.
Posted by Spiritwalk (Member # 46032) on :
I am on doxy and tindamax. I only eat a handful of clean foods and water. I think I have candida from the antibiotics, but my doctor didn't really seem to be concerned. He wants me to take a bunch of drugs for MCAD, but I couldn't find them all without gluten.
I focused on just taking the antibiotics, but I'm not seeing any results. Just worried im damaging my gut even more with no sign of improvement.
Posted by bluelyme (Member # 47170) on :
The damage may take a long time to reverse if at at all...all my joints creak pop. .back is disingrating acording to xrays...teasel helps some..fish oil ,phosphadle choline. How long have you had it?
Posted by bluelyme (Member # 47170) on :
Fire tree bark ,monolaurin and allicin for candida... i heard some one use vet med for it ..ask llmd for some nystatin or dyflucan, ...does your nose run with certain foods . Ltyrosine can help with histamines...as can nettles etc etc
Posted by Spiritwalk (Member # 46032) on :
quote:Originally posted by bluelyme: The damage may take a long time to reverse if at at all...all my joints creak pop. .back is disingrating acording to xrays...teasel helps some..fish oil ,phosphadle choline. How long have you had it?
I'm not sure. My symptoms all got bad in March of 2012. I pretty much felt great up until then. First it was nerve/joint pain in my hands and wrists. Then is started migrating to different joints in the body. About 3-4 months later my shoulders started popping, then wrists, then several other joints in the body. When I changed my diet after testing for food sensitivities, the nerve joint pain got better, but the popping continues. The popping now makes my joints hurt from the consistent popping. It wasn't until early this year that my back started and my neck.
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