weak slurred speech staggered gait weakness, body wide particularly legs eyesight blurred fasciculations
I began Tx on Tindamax and later Flagyl Doxy Diflucan. Now on Ketek. 6.5 months have weakened me such that I can barely type.
Vocal communication is offline. Walking only assisted w walker. Difficulty getting out of chair.
Added to above Sx are significant weight loss in spite of eating well. Further weakening and balance issues and weakening of hands and arms, increased tremors, facial numbness.
====Improved is my throat. This time last year I thought I had throat cancer due to hoarsness and irritation. C-Pnuemonia os leaving and swallowing and breathing are better, seemingly at the expense of legs.
Currently on 800 mg ketek day 100 flucanazole day
plenty of probiotics vit b12,b1,methylcob injections VitC 50G/Mg2g IV wk Mg citrate, VitE, Bcomp, copper, manganese
====Curious if I should be more aggresive with ABX? I am on ketek 5days tini 2 days wk..
-------------------- "In spite of the ever increasing cost of living, it remains quite popular" S. Shackel Posts: 87 | From walla walla wa | Registered: Dec 2005
| IP: Logged |
NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Hi Quai,
Little doubt you're positive for lyme. Bands 39 and 93 are very specific. It shows you've tested postive for bartonella as well. You're still fairly early in treatment so I would say your regimen of abx is adequate.
At some point you'll need to target the bartonella specifically, but your overall bacterial load is probably still fairly high, and introducing levaquin for bart may send you through the ceiling with herxing. [If you haven't already]
Ketek is a very powerful med and no doubt it's effective judging by your herx's. Our LLMD's rule of thumb is that if you're taking a med and feel like garbage, it's working. LOL
My son used a walker/wheelchair for several months due to herxing. Give it time, you'll see improvement and will be able to discard your walker.
Unfortunately, lyme treatment is a marathon and not a sprint. Excessive herxing can be counter-productive.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
| IP: Logged |
-------------------- "In spite of the ever increasing cost of living, it remains quite popular" S. Shackel Posts: 87 | From walla walla wa | Registered: Dec 2005
| IP: Logged |
posted
Has your Dr been checking your liver enzymes every month? The combo of Ketek + Diflucan is a rough one for your liver. It might be what's behind your weight loss. Are you still taking 1000 mg bid of Tini? That's a load also. IMO you should be feeling pretty darn good after being on Ketek for so long if it wasn't hurting you. I remember there being some questions about whether or not Diflucan and Ketek should even be used together. I would do some research on that. I remember that you were improving before you started Ketek, so maybe it's not a good drug for you, or maybe you just shoudn't take it with Diflucan.
Posts: 132 | Registered: Jul 2005
| IP: Logged |
I did research Flucanazole and ketek and found two camps, yea and nay. So I just take 100mg maybe 2-3 times a week to keep my non existent yeast problem in check.
I guess I am improving. but getting weaker overall at the same time. This weakness I atribute to detox issues mainly water.
It is hard to get enough water down when you just want to choke on it half the time. Amazingly I can pound water a day after the C IV, maybe it's the magnesium?
Ketek seems to herx like a -wave-, by the 4-5th day I NEED my vit C IV and a break. On the two break days I do 1000mg of tini, not at the same time as the ketek.
I have had liver tests, no problems so far. I eat alot of dandylion and raw spinach, thistle.
quai
-------------------- "In spite of the ever increasing cost of living, it remains quite popular" S. Shackel Posts: 87 | From walla walla wa | Registered: Dec 2005
| IP: Logged |
posted
Can't comment on the particular antibiotics you are taking as hubby has not taken the same ones, but in my opinion you need to be taking more antioxidants.
The COQ10 (400mg minimum) and Resveratrol (Japanese Knotweed source) should help with tremors and brain fog.
Are you taking the Vitamin C in sterile water or D5W -- D5W will help it go to the brain better. May herx on this.
Also, what about hypercoagulation. Heparin or nattokinase or lumbrokinase or systemic enzymes (Wobenzyme etc) might help increase bloodflow and allow the antibiotics to penetrate the brain better.
Phosphatidylcholine could also potentially help with tremors and eyesight.
Acetyl l carnitine might help with weakness.
Most all of these supplements are discussed by Dr B in his 2005 guidelines.
This is just my opinion, but I think you need to add in some of these supplements rather than increase meds. Please go slow and add only 1 new thing at a time until you see how you respond.
Might also try massages to help with lymphatic flow. Will probably herx if you have been sedentary.
Weight loss could be due to fat malabsorption -- if that is a problem then phosphatidylcholine might help with that as well.
If you try any of these supplements I would love to know if they help.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
I would not ignore the 'getting weaker' part. Especially is you think it's accompanied by muscle wasting and higher heart rate.
Your Blot profile indicates late stage Lyme (similar to what mine was) which means you have billions of lyme bacteria you have to erradicate. If you try to do it on continual abx- the collateral damage will be very great.
I tested positive by PCR to Lyme (MDL Labs) and positive for a high spirochete load. I pulsed abx- (on and off when I felt terrible) and it took me a year to regain my strength after I final went off abx.. I honestly think people really confuse the collateral damage from abx with lyme symptoms (course this is my opinion- and I have taken some flak for it).
Good luck. Barb
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
| IP: Logged |
Thank you for the input. I am also taking a tbsp of Phosphatidylcholine concentrate daily. Also digestive enzymes. Also I get 300mg of Solaay coq10. For blood thinning I use a tsp of turmeric in a smoothiie for breakfast. ALso niacin for flushing both abx deeper and detox.
I will try the Acetyl l carnitine, thanks again and best to hubby.
Barb,
I will focus on the weakness and wasting, yes it is real.
I concurr about collateral damage via abx vs Sx. My gut feeling has parraleled your input precisely.
I am curious at what point you decided to go off abx? Test results?
Thank you both so much for your experienced words of wisdom.
quai
-------------------- "In spite of the ever increasing cost of living, it remains quite popular" S. Shackel Posts: 87 | From walla walla wa | Registered: Dec 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic