Any help?
Posted by AZURE WISH (Member # 804) on :
are you herxing still...if so maybe ask ur dr about detox options?
Posted by seibertneurolyme (Member # 6416) on :
Have you talked to your LLMD?
So sorry you are having such a rough time.
Are you doing any type of detox?
When hubby has a problem with a "claw hand" it usually indicates some sort of electrolyte problem. Seems to happen more when he is low in sodium.
Do you have headaches or brain fog?
Not sure what to suggest, except that a break from antibiotics might be needed. I know with hubby I always went much slower and used lower doses of antibiotics. He just could not tolerate normal therapeutic doses of meds.
If you are not taking CoQ10, fish oil and antioxidants such as pycnogenol (pine bark extract) or resveratrol then I would suggest adding those. Phosphatidylcholine or lecithin might help also.
My guess is that you are having increased symptoms due to dieoff and the toxins.
Have you had an MRI or SPECT scan? Have you seen a neurologist?
More details about your history might be useful.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posted by ByronSBell 2007 (Member # 11496) on :
I would be willing to bet, you have bartonella, especially after you said you had a flare up when starting Zithromax because that kills bartonella and lyme.
I would also make sure you are on heparin and some type of cyst buster.
Posted by Alv (Member # 15192) on :
Yes bart is involved and I highly recomend you start treatment on bart and just hold babesia down with some artemisin a day ...
Posted by oxygenbabe (Member # 5831) on :
If you read Cure Unknown, Dr. Martz's anecdote, patients with ALS who were too far along their death was speeded by Rocephin.
Perhaps treatment is too toxic for you. Perhaps you need something quite different like hyperbaric oxygen treatments.
Posted by Parisa (Member # 10526) on :
I have sent you a PM.
Posted by Angelica (Member # 15601) on :
I have no answers for you but wish I did. I am just wishing the best for you and hoping your recover soon!
Posted by psano2 (Member # 11711) on :
When you say that mepron/zith flared you up, it sounds like you're herxing. That's what herxing is. Unfortunately, there's no way you can get around it if you want to get better.
Also, your condition of becoming immobile, dragging your legs, and the claw hands are symptoms I had before and early in treatment. I take it that you're still on Rocephin. Those symptoms went away for me with Bicillin LA injections along with Ketek, which many MDs may not be using anymore due to liver toxicity, but it took a while. If you're getting worse after 5 months of Rocephin, you may want to consider a treatment change. At least you might need to consider something else for Borrelia in addition to the Rocephin.
It's good that you're getting treatment for Babesia, but I think the leg and hand issues are Borrelia symptoms. I didn't get treated for Babesia for the first two years because I didn't test positive, but after relapsing a 3rd time we started treatment for Babs and I'm getting better...again.
Herxing at your stage is going be severe, but it's a necessary evil, IMO. Your body is overwhelmed with bacteria. They say that if you have Babesia in addition to Lyme, that you're 4 times sicker than with Lyme alone, and I believe it.
You sound just like I was 3 years ago. Now I go out and walk 3 miles with no problem. I take the stairs to the 3rd floor where I live instead of the elevator unless I have too much to carry. But I didn't get here without a lot of pain. Lyme is a horrible illness, and it doesn't seem fair that we have to suffer even more in order to get better, but unfortunately, that's the hand we've been dealt. I was on Bicillin injections for over 2 years all together, always in combination with at least one other drug for Borrelia.
Sometimes it's hard to tell the difference between herxing and getting worse, especially early in treatment, but it sounds like you're getting worse to me. What does your Dr say?
Posted by DoctorLuddite (Member # 13853) on :
My bet is (given the time of the year) that your vitamin D level has dropped to a point that is no longer sustaining normal metabolism. I also am thinking that the claw hand is worse on the right side, as the leg problem is.
Posted by beatlyme (Member # 15262) on :
THANKS FOR ALL THE REPLIES,AND YES NOW MY RIGHT
SIDE IS WORSE ,,WHY ???????????????
Posted by oxygenbabe (Member # 5831) on :
Look we are all only on the internet and dont know you but why is your LLMD putting you on rocephin so long while you get worse? I told you, Dave Martz's patients (per Cure Unknown)--those ALS patients who are already really sick and not walking, their deaths are speeded by rocephin. California Lyme used to report this too. She thought some ALS patients had tickborne viral encephalitis along with borrelia and babesia.
I'm not saying you are that, just that if you are getting immobilized, Id say go off the rocephin and my personal viewpoint which is not the mainstream is do something to restore muscle and nerve function like hyperbaric oxygen and then try to figure out how to treat. Others have suggested IM bicillin which is a good one, etc.
You should also test your detoxification ability. It could be for instance that you have genetically impaired detox in which case, you actually poison your system which is more than a plain old "herx".
And you would need to address that with detoxification such as cholestyramine (binds neurotoxins) or IV glutathione etc.
ArtistDi who doesn't post a lot here anymore had pancreatic damage from mepron/zith. She simply couldn't take it. She was also so sick and sensitive a few years ago she started on IV doxy 20 mg. She did steroids to stop her autoimmune/vaculitis reaction. Eventually she did IVIG instead. She started low dose on everything.
Posted by Parisa (Member # 10526) on :
Here is a link to a post by Sarah about ALS where she states that orals not IVs speed up ALS.