posted
I lurk here a ton but don't post very often. I've struggled with Lyme Disease since 2001 and have never really been better since then. I was diagnosed by in 9/02 with Lyme from the following Igenex results:
I did see Dr. P in CT in 2001 once. He did a WB at the local hospital who tested for all bands. I only tested positive for Band 34 on IgM. I tested negative for all co-infections through Igenex in 2006, as well as several negative PCR's and Elisas, three negative brain MRI's, negative spinal tap. My 9-year-old son tested Lyme IgG and IgM positive in 2003through Igenex, although he has no symptoms.
I pretty much was on just one drug at a time until Fall 2006 (Doxy for one month, Tetracycline for two months, Biaxin for one month, then Omnicef for one month, Ceftin for 5 months, then alternating Amoxicillin, Ceftin as well as Diflucan). During this time I was pregnant and had another child.
Except for during pregnancy, my symptoms have pretty much been constant, with a few periods of slight remissions. My main symptoms have been right-sided weakness, droopy right eye, "tightness" in face/jaw muscles, twitching and jerking, anxiety, pain, cognitive issues.
Recently after the delivery of my 4th child (April 3rd), I decided to get serious and see a great LLMD. Since starting Rifampin 600 mg, Zith 500 mg, and Bicillin shots 3 x per week, I am SO MUCH WORSE!!! I started these drugs three months ago. Well - I did Bicillin 1 x per week for one month, 2 x per week for 1 month, and now 3 x per week (for two weeks now).
I'm so scared and frustrated... It is always in the back of my mind that this is MS and not Lyme. I always wonder why I haven't improved much on the drugs that I have been on.
I have developed new, worsening symptoms in the past three months: left-sided weakness including arm and leg, "hyperactive"/constant flexed muscles on the left side, right-sided mouth AND eye droopiness, the right-sided weakness still remains, the mouth tightness is worse. It's so hard to have four children and function this way. I am also working part-time as a Labor and Delivery RN.
My LLMD is a little frustrated that I haven't improved in three months. He wants to add Plaquenil and Probenicid, but I am breastfeeding (which I am questioning at this point) and he doesn't want to add anymore drugs.
I am so confused at this point... Should I quit breastfeeding and hit this hard? Or am I hitting it hard and herxing? I don't know that I have ever really herxed before.... If that is what this is, when will it get better? My anxiety is always so high that this isn't Lyme. You would think that after this time I would know better. I guess I am just so tired of taking abx and still feeling so bad. I have the biggest fear of MS for some reason... I have had four neuro's tell me I don't have it and yet it is always in the back of my mind.
If anyone could shed some light on this for me, I would SO appreciate it. You have no idea how helpful and reassuring this board is. I read for at least a couple of hours per day and members have been so kind in the past.
Also, I am seeing Dr. H in CA (flying out from UT). He says that there is no doubt that it is Lyme...
Thank you so much for reading this long post!!
Posts: 292 | From UT | Registered: Aug 2001
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
dr H in CA is the best we have out here in the west. You are in good hands. He will get you better and if he says it's Lyme, it's Lyme. I know it's hard to trust someone but you can trust him.
Posts: 3528 | From US | Registered: Apr 2007
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
You'll find other people on this board who had been healthy at one time and are now struggling to get well again.
I feel for you. It's a tough disease and I have yet to see much progress either--diagnosed in November 2007...
Recovery times differ depending on so many factors. Keep following the board...it is very helpful...
You may want to try detox. It's something that I haven't tried yet but I'm about to....certain genetic makeups can hinder toxin removal...
In addition, make sure you have looked hard enough for other co's....viruses, mycoplasma, etc...
Tests are a hassle but worth it when you consider that health is the most important thing you can have...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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bettyg
Unregistered
posted
wolf, i'm sorry you're feeling so awful and then having 4 kids to take care of while working part time!
could you take some time off from work for now since you are hitting this hard??
hope dr. h is able to help you! i haven't been on meds you are; so no experience, but sending you my prayers for help and RELIEF!
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi skrwolf-
the more time that passes since infection the WB tests get less and less accurate -
The test results you listed are the 2002 test??
The test results you list are show Much more positive results than my tests were but I did not get tested for 18 yrs after infection--(Igenix)
I saw a picture perfect bullseye on my leg weeks before I started getting sick -
I am not fimular with your history except for what you posted here -
Usually treatment with only one ABX dose not do much -- and can slow things down -
You say that since you started taking multiple ABX at the same time that your symptoms have gotten worse and new symptoms are showing up
To me the worsening symptoms with multiple ABX is a Good sign- I would say that you are starting to herx -
3 months of multiple ABX is a very short period of time to have your symptoms lessen or get better especially since you have been sick for 7 years --
Bicillin works well but good results usually take more time to happen (many months) - Its just slow acting abx for most people -
I know that new symptoms popping up is scary and even when you know it is going to happen its still scary - I have been there many times --
The symptoms you list you say Pain - give more info about the pain -
Explain more about the muscle tightness -- is it only in face or all over ??
What is your temperature ??- check it several times threw the day -
I am not fimular with your LLMD but CD57 trusts him -
If it was me I would continue treatment- the ABX you are on now is a good combo and you are starting to have some results-
Nothing about Lyme or the co infections treatment is fast or easy - -
As far as breast feed your baby - I dont know much about it but it may be a good idea to be careful and not do it for awhile -
The mixed feelings you are having are common- everyone wants a Yes or No answer - but at this time there is no conclusive test-
Personally I was Lucky because I saw the billseye- if I had not seen it Im sure I would have died several years ago with no idea what was wrong with me --
Since you have 4 kids I think it would be a good idea while you still feel some what OK to make some arraignments for someone to help you take care of your kids- if you start herxing hard --
Herxs can be very deblating and during this time you need to rest as much as possible - Rest is Important -
I see that you are in UT- Do you think you got bit there or somewhere else??
Hope this helps you--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
I also wanted to add-
You will get Better- I Have - and so has thousands of other LN users-
I got to where I felt 99% better and then 5 months ago I got bit again- Dam -
Now 5 months later Im feeling 90% better- -Jay-
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
up
Posts: 292 | From UT | Registered: Aug 2001
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
I don't know if its so good for you baby to breastfeed while on abx, as they will pass into your baby.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
I was told MS, too. In my opinion MS is Lyme. Too many of us told MS and then get better with abx. Hang in there, it took me along time to see results too. Some are slow at healing and some are not.
As mentioned above, detox alot! You will not believe the difference it makes in how you feel.
Listen to the CA doc. Take care...you will get better!
Amy
-------------------- Amy
Diagnosed April 29, 2007. Posts: 136 | From Joplin, MO | Registered: Apr 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Am I reading your test right - every band on both the IgG and IgM are positive, EVERY band?
First I have to say I have seen 2 LLMD's - I asked my ILADS LLMD if I will get better - he shrugged his shoulders! I asked my non-ILADS LLMD will I get better, he said, "Without a doubt". I won't be seeing that particular Ilads LLMD anymore...if he isn't sure he can help me get well, there is no reason to go back.
I have had nerve pain severely, on the floor screaming nerve pain. I have treated for 2 years and only improved slightly.
I can't hit it hard..my pain starts at a 9-10, 3 shots of bicillin would kill me, literally. You are lucky to be able to take these kind of doses and tolerate it.
Your on a VERY hard hitting regimen Bicillin, Zith, Rif? And your LLMD is frustrated that in 3 months you have no improvement? I think you need another LLMD without a doubt. 3 months in the lyme world is nothing! You are barely getting started at 3 months, I hate to say that, but I want you to know that is so odd to me that your LLMd thinks improvement should be seen in 3 months - it took me a year to notice a tiny improvement. Bicillin takes 6- 1year according to Burrascano to work.
There are people here, including me that do low doses or high doses for years and like a snail, we inch forward.
You are herxing if you are worse...you can herx off and on for years (read Wildcondor's story: http://www.wildcondor.com/lyme.html ) I seem to herx non-stop. For example when I did small amounts of Bicillin for 5 months, I hurt so bad all the time I was convinced I was getting worse. So I decided to take a break from Bicillin and go to orals for awhile...after a few weeks of being off Bicillin, I noticed I felt slightly better. I realized I was herxing the entire time, not getting worse!!
With all my nerve pain, I have thought I had MS without a doubt. I even have brain lesions, sounds like an MS slam dunk! But it isn't, there is so much more to being diagnosed for 'certain' with MS.
I even visited the MS boards and talked with them, they gave me a link (below) that will help you determine if you have LD or MS. It isn't perfect, but it gives "red flags" to NOT having MS.
Also consider some LLMD's believe MS exists some believe MS is lyme, even if I had MS I would never treat with the IV corticosteroids they use. The criteria to be diagnosed with MS is very hard. Please NOTE they themselves even say MS can be misdiagnosed and they could have Lyme!
When I told them that I have had 3 positive Igenex tests, I think they thought I am crazy to think I have MS...but I can't help it...the nerve pain is so intense.
This really helped me see that THEY need testing for Lyme - not the other way around.
posted
Thanks to all those who have answered... I am feeling much better about things (although not physically better). Here is some clarifying info:
Dr. H in CA is the one who prescribed the abx I am currently on and the one who said that he was surprised that I wasn't feeling any better yet. I was surprised to hear this as well - I thought Bicillin took a long time to work.
Yes, those were my test results. I had a lot of positive or equivocal bands. I would be interested to see what my WB shows now... But I don't want to get a possible negative and mess up insurance coverage.
I also had the CD-57 test - it was 80.
The abx that I am currently on are compatible with breastfeeding and it's okay that they're passed to the baby in tiny amounts - actually protects her from the Lyme. I just don't know what to do about changing abx now... To stop breastfeeding or continue for a while on the meds I am on.
Lymebytes, thanks so much for the info. After looking at those red flags - I do have many of them. I have not had "relapses and remissions" per say, other than during pregnancy. Symptoms have kind of come on one by one and not gone away much.
Thanks Keebler for the book link - I am going to order it.
Any other input is much appreciated - thanks again for the reassurance.
Shelly :-)
Posts: 292 | From UT | Registered: Aug 2001
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posted
Also, has anyone else been on this combo of meds? Will adding the Plaquenil/Probenicid make the herxing unbearable?
Posts: 292 | From UT | Registered: Aug 2001
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and then having 4 kids to take care of while working part time!
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