Just got a call from my LLMD this morning. She instructed me to stop all abx until I can see here on Monday morning. She got my monthly lab results and saw a low white blood cell count and decided to it was important to be careful.
I am currently on 2,000mg/day Ceftin and 2 weeks of 400mg/day Doxy preceded by 2 weeks of 750/mg day Flagyl. The plan until this morning was to switch back to flagyl for 2 weeks from Doxy after my monday appointment.
I am scared. I've been on abx for 6 months, before that I felt really crappy and I don't want to go back to that. As of now I feel okay but had been very foggy over the last 5 days while other symptoms (numbness, joint pain, knee swelling) have been minor annoyances.
The LLMD said all of this could have come from a herxhiemer or it could be the meds wreaking their own havoc.
If others who have been in the situation could let me know how they handled it and what happened next for them it would be very helpful. I just don't know what to expect over the next 5 days with no treatment...
Posted by donaldmn (Member # 16717) on :
Sorry to hear about your situation-I can't offer any help, only support. My husband is on IV Rocephin and oral zithromax(right spelling?)and they draw his blood weekly at his LLMD's office, I assume to watch for things like this. He has had issues with his liver and kidneys, but not with the WBC. I wonder why the meds would affect only the WBC? I constantly worry about the long term affects of the meds my husband has to take for this disease. I know there is no other options. I may have Lyme myself, and may be starting meds at some point in the future. This is a good post, and hopefully you will get some good informative responses. At least you have a good LLMD who caught this early-maybe your system just needs a little break,or a new regimen of meds, so that your WBC can eventually bounce back. Keep us posted on your situation-sorry I couldn't really help!
Posted by MariaP (Member # 18692) on :
My LLMD also took me off all meds except the probiotic on Monday 2/2/09 for 2 weeks.
My wbc's are slightly high and I have been having signs of kidney failure. (swelling, flank pain, etc.) My bun & creat. are ok but I don't want to wait until they are elevated.
I started treatment 5 months ago and personally am glad to have the break from all those meds.
She wants to reintroduce meds slowly. Not sure why you have low wbc's. There is always a possibility of lab error which is quity common.
How do you feel? Any new symptoms in the past week or so?
Posted by Starch (Member # 16205) on :
No new symptoms but an increase in fog specifically over the past week. My Doc suggested that the bloodwork could be explained by a herx which jives with the increase in fog I guess.
Posted by luvs2ride (Member # 8090) on :
Starch
We need to do more than just kill bugs. We need to build up our bodies to #1 fight the bugs, #2 fight the adverse side effects of the drugs #3 clear all the toxins that are overloading our liver, kidneys, lungs, lymphatic system and skin. These are the detoxification systems.
As long as we detox well, we stay healthy. But when we stop detoxing well, all the symptoms of illness strike.
Inflammation comes from
bacteria toxins drugs bad diet
Stress suppresses all the body's functions such as the immune system and the adrenal glands. So don't take that job you were considering.
Right now, just focus on building up your body. If you eat mostly vegetables and fruit, you will detoxify much better and this will help clear some of the drug and bug toxins that are overwhelming your system.
Additionally, there are herbs and certain foods that are antibacterial and antiviral and antifungal. You should make it a point to start eating more of them.
Just fighting this battle with antibiotics can lead to toxic overload and body damage that is not from the disease but from the cure.
Very important to take premium care of the body while fighting the illness. This is why sugar and processed foods should be struck from your diet.
Posted by sixgoofykids (Member # 11141) on :
A few days off meds won't do anything. Lyme is slow growing. Usually if you have coinfections you would feel bad quickly, but not with Lyme.
I agree with luvs, use the time to detox and build your body to be better able to handle treatment. It's hard to strike a balance.
Posted by glm1111 (Member # 16556) on :
Erlichiosis can cause a low wbc. It attacks and infects the white blood cells. ( HME and HGE) Have you been tested for this?
Gael
Posted by Starch (Member # 16205) on :
I've been tested for all co infections.
I tested positive for previous exposure to Bartonella but negative for all other co's including Erl.
Posted by lymie68 (Member # 18442) on :
Regardless of what is happening you do need to build up your body. The abx are really tough on the immune system long term. Start with a well researched pharmaceutical grade multivitamin/mineral complex. If you're run down you'll start feeling better very shortly. Not great, but better. Consider herbal supplements also. Of course, you need to work with your LLMD on this.
Posted by Starch (Member # 16205) on :
Here's a quick update.
after 1 week with no treatment and got bloodwork done yesterday. My LLMD called to day and said all systems are go and to get back on the protocol. Started 1,000mg ceftin 2/day and will add 250mg flagyl 3/ tomorrow.
Over the past week I've actually felt really good. Not symptom free but almost no fog or joint pain and mild numbness. Of course I want to get better and look forward to taking meds again but it was actually nice to take a breather.
Posted by TerryK (Member # 8552) on :
Starch, same thing happened to me. A break can be good because it allows your system to clear out some of the debri from treatment (dead bugs etc.).
Glad you are back on the protocol.
Terry
Posted by disturbedme (Member # 12346) on :
I am sure your low WBC count is due to the abx. I wonder how low your WBC was? Do you have any idea?
My WBC has been low for over six years - like extremely dangerously low (2.0 range; normal is 4.0 - 10.5 -- but is NOT due to abx or anything that we can find a cause for, even a bone marrow biopsy was normal) and I've been on abx without any problems.
I am sure you'll be fine. You'll be off abx for a month or not even that long and your WBC count will be back up to normal and then you can restart abx. No problem.
I hope it goes that smoothly for you. It usually does for most people who have issues with low WBC due to the abx.
Posted by hurtingramma (Member # 7770) on :
I have the same problem. I had a bone marrow biopsy done on Monday; no results yet.
I was taken off abx in early Jan. because my wbc was 2.1. It is now up to 2.5 and I'm back on them.
I told my LLMD I wanted them back and said "if I die, it's my fault", to which he replied "not really, it's ultimately on my shoulders"
The month without abx was hell. I went downhill starting 2 days off!
Glad to hear yours is back up to. I think this is a common problems for many of us.
Posted by donaldmn (Member # 16717) on :
Hi Starch-Thanks for keeping up updated on your ABX situation-glad it's seemingly under control.
What did you and your wife decide about ABX for her, just as a precaution? I read on another post from you that you were getting a second opinion for her. Also, was she originally tested for Lyme at a lab like Labcorp or Quest or was it straight through Igenex? I'm following what you two are doing about her, because as I told you in a previous post, I'm on the fence as far as what to do for me-I have an appointment next week with a supposedly Lyme literate nurse practitioner, and I'm showing him my bloodwork and WB results to get his opinion on further testing for me. I won't spend the $$ on an LLMD unless it becomes absolutely necessary. It's costing us enough with my hubby's treatments. Hope to hear back from you if you can-
Posted by Starch (Member # 16205) on :
Regarding my wife and potential abx as a precaution. We are getting a 2nd opinion for two reasons. One, to get another perspective. Two, to save money.
She'll be making an appointment with an LLMD that takes insurance. If the doc thinks its a good idea to do treatment then we'll do it at that point if not we'll weigh our options.
Posted by randibear (Member # 11290) on :
i had to stop once because my liver enzymes were off the charts. i was having white stools, right upper abdominal pain, lower right side flank pain. man, i was a mess.
after i was off them for awhile, things seemed to stabilize, and now he checks them a lot more often....