posted
Folks, I have posted here before and I really need some help.
Here is the lowdown... Had chronic headache, floaters, testicular pain, fasciculations, and very sore neck for months. Saw tons of specialists - all said I was fine.
Went to LLMD in sept of this year. I was put on biaxin, 500mg BID. Took this for six weeks. I never noticed a herx, but I did feel better.
Towards the end of that six weeks I got sick like a sinus infection - clogged with clear drainage. This took about 10 days to get over. Stopped biaxin in the middle of this.
Started feeling very sick after the "sinus infection" cleared up. I started getting these pulses of extreme fatigue. Cold hands and feet started hurting and becoming numb (neuropathy). Now I have severe fatigue, sore throats, the headaches are back, floaters, etc...
One really weird thing with this is that I have had pvcs (palpitations) over the last few years, worse after eating, and last week they vanished. In fact my heart seems to be on auto-pilot. I am so weak, and nothing seems to get it going now.
My GP says it is not LD. He is having other tests done on me. I have had IGG and IGM testing and was negative. I can't get in to my LLMD until mid-January. I am very weak and have constant chills/sweats.
I have a very sore neck...could it be a pinched nerve or something else or should I continue the LD treatment? If I continue abx can I still be healed?
-------------------- "Sometimes trouble just follows a man" - Clint Eastwood as Josey Wales Posts: 40 | From Pittsburgh, Pennsylvania | Registered: Aug 2007
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
Sounds like lyme and possibe co-infections to me.
Maybe you can try some herbs until you see your llmd.
I am currently on the C protocal and it has helped a lot.
Feel better.
Posts: 1603 | From ny | Registered: Aug 2006
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posted
Did any bands show up on your IGM/IGG? Did your LLMD do an Igenex western blot?
Your symptoms sound very Lyme like, a lot of people here have them. I don't know if you can be cured, but you can once again be symptom free if you have a good LLMD.
PS. let the GP do the tests he wants, most likely he won't find anything though. See, most people with your symptoms end up having "chronic fatigue syndrome" and "MS", becaue: 1. doctors don't know what is wrong with you and so label you with those diseases 2. precious time is wasted and the disease progresses, when you should be treating the bugs causing it.
-------------------- Why me? Well, why not me??? Posts: 411 | From San Francisco, CA | Registered: Mar 2007
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Most docs will not diagnose Lyme if the test is negative. The test is falsely negative 60% or more of the time. We are in a political battle. Stick around here and you will learn.
If I were you, I would stick with the doc that offers help and tries different methods to help you. Who needs a doc to stand there and say "I dunno". Eventually, you primary will say" Well, we've done all the tests ......... you are fine." So if your good with that outcome then stick with the primary.
If you want help, get thee back to the LLMD ASAP.
Just my opinion
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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quote:Did any bands show up on your IGM/IGG? Did your LLMD do an Igenex western blot?
Good questions!
You might want to test for mycoplasmas as well. They are similar in symptoms!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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posted
I honestly do not know if any bands came out. I do know that the ELISA test I first had came back "abnormal negative". Any idea what this means?
I appreciate the input from everyone.
-------------------- "Sometimes trouble just follows a man" - Clint Eastwood as Josey Wales Posts: 40 | From Pittsburgh, Pennsylvania | Registered: Aug 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I would be surprised if your GP did think it was Lyme .... I would get back to the LLMD and continue treatment until he thinks you're done.
You might get a copy of your lab results so that we can help explain them to you. There must have been some Lyme specific bands for the LLMD to think you have Lyme.
In the meantime, you could take the Cowden herbs available at www.nutramedix,com. I'm on samento, cumanda, parsley and burbur in addition to my abx regimen.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Possible coinfection of babs sounds like to ME!!
Send the payment for my services,overnight please!! OH wait,I aint one,,darn.
But I bet I can darn neared do as well as your GP is going to!!
Believe the LLMD,,it WILL get you well. Call and get placed on standby if somebody forgets to show,or cancels!!
Stick around here,,,read and learn!! you will never get such a low priced, quality education in your lifetime!!
If after graduating top of your class in our make believe 'school of hard knocks',,you will probably be our valdictoriian!!
Dont forget to apply for PHD status after 8 years or so!! (Pretty Hard Disease) to kick!!
After all it is the knowledge that gives you power!!unlike--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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If this really is Lyme, which it seems it is based on your replies (and possible co-infections) will it go through a cycle of remit versus relapse or will this terrible neuropathy/pain and fatigue just continue to get worse?
If I start taking the biaxin again what is the likelyhood that I will feel better by Christmas...I think you see where i am going with this...I want to at least feel better during Christmas so I do not let folks down.
Thanks again...I appreciate it.
-------------------- "Sometimes trouble just follows a man" - Clint Eastwood as Josey Wales Posts: 40 | From Pittsburgh, Pennsylvania | Registered: Aug 2007
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With my symptoms, do you think I should be in IV antibiotics? I can still get around and think ok, but I have waken up worse every morning for that last 10 days.
Also what is with the PVCs disappearing? Am I experiencing autonomic neuropathy?
-------------------- "Sometimes trouble just follows a man" - Clint Eastwood as Josey Wales Posts: 40 | From Pittsburgh, Pennsylvania | Registered: Aug 2007
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posted
My PVC's come and go too. They are not constant. As for IV, that is only something a dr can decide WITH you!! Remember they are PRACTICING medicine, you are living your ill health.
EDUCATION is one major key here and listening to your own body with the education as your tool. A good LLMD is hte other key - someone who will listen to you HEAR you and make a plan of action that they are willing to reevaluate and not give up on you.
Odds are if you start tx now you wont feel better before xmas but worse. At least off and on. Some feel better pretty quick but the majority dont.
Good luck and keep coming back and educate yourself above anything else! Doctors are NOT GODS! They are people too!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
One thing about Lyme is, it's unpredictable! The symptoms can cycle, but it can also just continue to get worse.
Unfortunately, chances of being better by Christmas are slim. HOWEVER, some people feel better immediately on the meds. I was about 15% when I started medication, and jumped up to 25% right away.
So, you could feel a little bit better soon.
Only your LLMD can tell you whether you need IV. I have gotten better without them, but my symptoms were different than yours.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Thanks again for your time and support. You are a wealth of knowledge. I will try to get into the LLMD as soon as possible...I'll ask about the waiting list, I am sure they have one.
Hey...can lyme be sexually transmitted?
Are there any herbs that will ease the neuropathy and brain fog in the short run...I have heard of samento (which I think is cats claw) and some type of ginseng perhaps...
Thanks
-------------------- "Sometimes trouble just follows a man" - Clint Eastwood as Josey Wales Posts: 40 | From Pittsburgh, Pennsylvania | Registered: Aug 2007
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pamoisondelune
Frequent Contributor (1K+ posts)
Member # 11846
posted
There was a thread here a few months ago on sexual transmission; the gamut of opinions was represented in the thread, from 100% yes to 100% no. Some lyme doctors believe it is, some believe it isn't. My LLMD said, "Evidence is conflicting. When animals are put together in a cage just for mating, they don't transmit; but when animals live together in a cage, they do transmit it. Urine is suspect." He said he knew a woman who had lyme for 40 years, but her husband never got it.
You should search on sexual transmission of lyme; you'll find plenty of people with opposite opinions.
Posts: 1226 | From USA | Registered: May 2007
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bettyg
Unregistered
posted
fyi, dr. lida mattland, sp, 90 yrs. old, concluded YES, LYME IS SEXUALLY TRANSMITTED either 1-2 yrs. ago she spoke about this at one of lyme conferences!
i wouldn't start something; 2 weeks till xmas; no way. i would want to feel as good as i possibly can.
are you able to do hot water exercise therapy? might help you some. good luck!
sounds like bart, and i've only been reading the symtoms forever here!!
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Sorry to hear about your suffering and symptoms. it sounds truly miserable.
I would not dismiss your GP out of hand. It is really important at the onset of symptoms to rule out as many things as possible to get to a proper diagnosis. I know when you are very miserable, it is hard to wait and make sure you are on the right track before jumping into any kind of treatment. "First, do no harm"
With a disease like Lyme that can have soooo many symptoms, and share many, many symptoms of other diseases as well, it get tougher then, to get to the right diagnosis.
Neck pain can be caused by a multitude of things - injury, whiplash, pinched nerves, sleeping funny, clenching teeth at night, jaw problems, etc. Testicular pain can also be caused by different things. And PVC's by different things! It's complicated.
I would try to find an answer re: the abnormal negative ELISA. Perhaps they can order another one.
Another cause of fatigue can be lots of other things - viral infections like HPV6, parvo, CGM virus, mycoplasma, chronic sinusitis, problems with yeast, sleep apnea.
It gets complicated! Be careful, and be patient to get to the right explanation. And, in the meantime, try to educate yourself as much as you can. There is a link called Newbies at the top of the page that might help.
I wish you all the best,
Anneke
Posts: 364 | From California | Registered: Sep 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Go with the LLMD.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Most GPs will not think it is Lyme. Many doctors do not believe in chronic Lyme and you cannot change their minds. You need to do research on your own and decide whether you want to trust your LLMD or not.
Lyme is a clinical diagnosis. That means it cannot be ruled out with a negative test. However, it also means that you want to rule out everything else when you diagnose Lyme. Most LLMDs will test you for other illness before diagnosing Lyme. So I think it is a good idea to get the other tests.
I wouldn't start herbs or other treatment without first talking to my doctor. If you can get in to see your doctor in a month, that's really not all that long. Most the herbal treatments takes months or years to work, so taking it for a month won't make much of a dent.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Would you take your GP advice on a stage 2 cancer dx? No, you would go to a cancer specialists or two and trust their treatment suggestions and do some research and YOU would make a decision.
Right? Same with lyme & company. Does this GP specialize in lyme & company?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
quote:Originally posted by pamoisondelune: He said he knew a woman who had lyme for 40 years, but her husband never got it.
I've had Lyme since before I met my husband of 23 years ... he does not have it.
My LLMD thinks sexual transmission is unlikely, but no one knows for sure.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I would steer far away from the ducks as far as Lyme is concerned. Listen to the LLMD. I am totally disgusted with ducks, ducks and more ducks.
Good luck,
Hugs, Perplexed Posts: 324 | From Lexington, KY, USA | Registered: Dec 2001
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Hey, perplexed. There was someone posting the other day looking for some ducks in Lexington area. Oh no, I'm sorry she wasn't looking for ducks, but she was looking for LLMD in our area.
The looking for LLMD in KY area is over in seeking a doctor. Maybe you know some type doctor that half way would be of help to her in Lexington area, since she is new to the city.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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posted
Wow so much info out there...thanks for all the replies thus far. I still feel crappy, but have some fleeting moments of feeling better.
To answer some info:
My GP is trying to rule out quite a few things, so hopefully I will at least know what I do not have soon.
The western blot was done by Mayo Clinic Lab and not Igenex. I am going to follow up with a test from them since I was on biaxin for six weeks and feel so terrible. Perhaps there will be some antibodies in there somewhere.
-Bill
-------------------- "Sometimes trouble just follows a man" - Clint Eastwood as Josey Wales Posts: 40 | From Pittsburgh, Pennsylvania | Registered: Aug 2007
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posted
Well I had an MRI this week and also had an EMG/NCV. The MRI showed a 4mm white matter lesion that they indicated could be non-specific (gliosis) or from MS (which they said is unlikely. Also, chronic sinusitis was detected.
The nerve and muscle testing was normal (even though I feel the peripheral neuropathy symptoms).
The neurologist feels that MS is highly unlikely. My GP wants to put me on avelox for the chronic sinusitis.
My question is could my fatigue and neuropathy actually be from the sinusitis? A few weeks ago I was working on a wall that was damaged by black mold. I did not have a mask and may have breathed in some of the mold spores. Would there be different symptoms with a mold infection?
Any comments are greatly appreciated. Hope you are all feeling better as Christmas approaches!
-Bill
-------------------- "Sometimes trouble just follows a man" - Clint Eastwood as Josey Wales Posts: 40 | From Pittsburgh, Pennsylvania | Registered: Aug 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I would keep that LLMD appt.!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
The fatigue could be coming from the chronic sinusitis. You'll know one way or the other once the Avelox begins working. [Beware of nasty side effects on that one!]
But I've never heard of sinusitis causing neuropathy!!
If *I* were you I would DEFINITELY get a Western Blot done by Igenex before abandoning the idea of Lyme disease.
You could easily have chronic sinusitis AND Lyme. I do.
Lyme sets us up for all kinds of opportunistic infections that most people would be able to conquer more easily.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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