richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Hi all,
My name is Rich and have been on the forum a few weeks but never introduced myself and I also wanted to get some feedback on symtoms, if possible.
I had Ulnar entrappment sugery in October because I noticed I was getting tingling in my left hand. Since the surgery, that has cleared up. I mention the surgery in case anyone thinks I am way off and the surgery could be linked in some way.
Two weeks later, I notice a pain in the ball of my right foot and it is worse when I walk and roll off the ball....then I start to notice tingling in both feet and into the legs. Then I start to notice tingling in the hands and sometimes the back of my scalp would go numb in the morning after sleeping. I started having nausea and loss of apetite, short term memory loss, pain in my left wrist and pain in my knee and hip(could be from limping on the right foot).
I noticed my balance was not that good and I got shaky when I worked out and long days on my feet hurt and I got tired easily. Fatigue was terrible the first few weeks and some night I woke up with terrible knee pain and sometimes I would have the leg totally numb from the knee down. It wouldn't last long. It seems my feet fall asleep so easily now.
The pain in my feet comes and goes, sometimes just aches and tinlging, but much better when I rest. Now the pain in my left wrist has gotten a bit better but now I am getting weird jolts of tingling in my right wrist when I twist it a certain way....like I pinched a nerve.
I also experience shortness of breathe and swallowing issues. I also suddenly had pain in my teeth like I was hitting cavities when chewing. Also, an odd spasm like pain in the mid back.
Some docs tihnk it is bad feet and I need orthotics and the rest is just anxiety...they tested for all sorts of things but I am at the end of my rope. I get tested for Lyme in a few weeks but my insurance will cover most of it with the exception of possibly the Babesia test -$200+. I can get my company to fight that one.
If I do not have LYme, not sure what or where to go next. I know I do have Monoclonal Gammopathy....my marrow produces a abnormal protein. Related?
I almost feel like I have some odd nerve entrapment syndrome.
The doc I am going to see is in Chadds Ford, PA and seems highly respected on many boards. He takes insurance which is important. I need to find out if they are in network for Aetna. I hope they send to the correct labs.
We spent the last week in September in the Adirondacks of New York, and we did some hiking and we stayed on the lake. We live near Valley Forge National Park and we hike and walk in the area, a hot bed for Lyme.
Thanks!!! Rich
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
I would suspect Lyme, bartonella (foot pain), and babesia (shortness of breath).
Is the doctor you have an appt. with an LLMD? If so, he sounds like the right person to see.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Sounds like it could be tick borne infections going on, sometimes things worsen after a surgery.
I hope things go ok with the Dr you are seeing, I saw this dr, also had Aetna, but the dr said I had the wrong insurance for treatment, meaning Aetna doesnt like to pay for the IV.
This was a few years ago, so maybe things have changed.
Did you call to make sure they will use Igenex?
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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My personal experience- long before I was diagnosed I was becoming ill with just a few symptoms, then I fell and broke my shoulder.
This event triggered an onset of severe neurological symptoms that I now know were Lyme. Many of them were as you desribe, and some were very bizare.
I've read the bateria that causes Lyme can detects moments of weakness (physical, psychological, stress etc.)and spread very rapidly.
Hope this helps
BJK
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Keep in mind everyone, I have not been diagnosed.
However, can Lyme result in some sort of abnormal protein in your blood? I have a monoclonal band that is odd - Monoclonal Gammopathy of Undetermined significance. My Hemotologist said this can cause tingling and pain if the protein is in the peripheral nerves.
Anyway, the doctor I am seeing in Chadds Ford, PA is an LLMD doc.
Where is the documentation concerning Lyme and bartonella (foot pain)? Also, linking Lyme and babesia (shortness of breath)?
I started working out again and started gaining back weight. Is that difficult with Lyme? To gain back weight?
Main symptoms now are pain in feet, tingling in feet, vibrations in my left hand fingers at times (minor), some left wrist aches and I get this jolt in my right wrist if I move it a certain way, like a pinched nerve. The issues with my feet are much improved with orthotics.
Should I keep my appointment with this doc? I was wondering if there is still a chance of even having Lyme.
I was told I could have some form of nerve entrappment syndrome, a pressure palsy, iron absorption issue, who knows. I was told a spinal tap or lumbar puncture may help diagnose.
Just some history, I separated my shoulder two years ago and had surgery and then had ulnar entrapment surgery in October so I have had a few surgeries!
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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Symptoms with Lyme (and other tbd) can come and go. It's like waking up with a new disease every morning.
Get tested via IGeneX, see your LLMD, and you can decide how to proceed.
A lot of your symptoms sound like mine including the scalp numbness and vibrations.
~webmeg
Posts: 257 | From Connecticut | Registered: Oct 2007
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Hi there Richidie,
I'd keep my appointment. I went the route that you're considering. Lumbar puncture and thousands of dollars worth of tests done at Mayo and Emory.
They never caught the Lyme and co-infections I have.
Like you I was in pretty good shape until I got hit by a truck on a mountain bike and went through the windsheild.
Have had two major shoulder surgeries and after the second one I went down hill quickly.
I thought for the longest time that my symptoms, weakness, headaches, neckaches, numbness and tingling, anxiety, etc. were caused from my accident.
For me the accident and 2 surgeries maxed out my immune system and Lyme and company took over from there.
I'd have the bloodwork first. Early treatment if you have Lyme and company makes a difference and would possibly help you to recovery from that surgery.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6164 | From Columbus, GA | Registered: Jul 2004
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quote:Originally posted by richedie: Where is the documentation concerning Lyme and bartonella (foot pain)? Also, linking Lyme and babesia (shortness of breath)?
You might benefit from reading Dr. B's treatment guidelines and diagnostic hints on www.ilads.org.
Foot pain is a symptom of bartonella and shortness of breath of babesia .... they're on the symptom list. Maybe I'm not understanding your question. Both bartonella and babesia are known coinfections of Lyme Disease.
I would keep that appt. with the LLMD .... its is the nature of Lyme to come and go.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
My neuro tested me for the monoclonal gammopathy stuff a yeah ago, mine came back negative. That condition can totally cause peripheral neuropathy(tingling, pain in soles etc.) so I'd look into that. Did you have your protein checked recently to make sure it hasn't progressed?
I don't know how the shortness of breath fits with the monoclonal stuff so I'd pursue the Lyme option too. Get tested by Igenex western blot.
-------------------- Why me? Well, why not me??? Posts: 411 | From San Francisco, CA | Registered: Mar 2007
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daise
Unregistered
posted
Hi Richedie,
Welcome!
Anxiety does not cause neuro problems. That is a big hint! Lyme and bart can cause anxiety and certainly neurological problems.
We're typically misdiagnosed with all sorts of things. Lyme and co-infections affect us differently.
What else could your neuro signs and symptoms be? I'm not a doctor, but I don't know what else your multisystem disease could be! It's that you have heavy neuro involvement (Central Nervous System) and peripheral nerve involvement.
IMPORTANT: Is your doc appointment with an LLMD (Lyme-literate MD) who is also an ILADS physician? Will your western blots be sent to IgeneX in Palo Alto, CA?
Please keep in mind that Lyme and the co-infections are a clinical diagnosis.
Does Lyme or babs cause abnormal protein in the blood? I don't know.
Many of your signs and symptoms sound like me.
I have what feels like half-a-ball at the bottom of my right foot--right at the ball of my foot. (hmmmmm ... ball at ball of foot.) It put me off balance and added to my bad gait. It's miles better now with heavy, prolonged multiple antibiotics treatment, which is on-going.
The ball at the ball of your foot: No one knows if this is caused by bart or caused by Lyme. However, it is neurological, to be sure. (This is not a direct sign of either, that's why it has to termed neurological.)
Painful soles is one of the symptoms of bart. Not specifically a ball at the ball of your foot.
More will become known with research.
The other muscles problems are neurological (and perhaps at the cellular level, too.) Caused by Lyme? Bart? Babs?
Come back! You can post new threads with more questions.
Yes, you absolutely need proper assessment for Lyme.
richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
The biggest problem is my feet! That is why almost all my docs just think I need orthotics and the other symptoms may be anxiety. Boy, I hope so! I will say that orthotics and better shoes make a big difference, much less pain! I have none of the stabbing pain in the ball of the foot since going with the better shoes and OTC orthotics. I am waiting for my $450 orthotics to arrive. UGH! I do have pain all over the ball of the foot and it is really tender in the morning after waking. MRI is negative...no plantar fascitiis, etc. Only thing they can think of is either early tarsal tunnel or metatarsalgia.
I will keep my appointment and I also have one with a very good rheumatologist that day. I keep hoping one of these docs will catch something someone is missing. I thought about cancelling the Rheumy appointment as well but I waited three months to see this one.
The shortness of breath thing may be in my mind - I can't tell anymore. Sometimes I feel I can't get enough air or take a big enough breath and other times I never notice it. I have weird dental issues as well. Some days it is like I have cavities popping up all over and it is hard to eat. The problems swallowing have pretty much gone away but every now and then I get a little of that symptom.
The docotr is an LLMD doc and well respected at that. I think he also is a web master for some Lyme sites. he is in Chadds Ford, PA. I don't know what tests he will order but I talked to the assistant or secretary and she said that Aetna will cover all the tests but one - the Bebesia? She said, I will probably owe Aetna $200 or so.
I had the nerve conductivity tests by the neuro and they are fine, but the hemotologist said the monoclonal gammopathy can cause the tingling and pain and that if I still have this at my next visit, he will do a nerve biopsy.
It was recommended by a few people I should have a spinal tap or lumbar puncture to catch something being overlooked. I may ask my hemotologist as well.
The thing that drives me nuts is all the speculation. Well it could be this or that or the other thing.
If you read sites on anxiety, they talk about varioous forms of tingling, numbeness and pain from anxiety disorders.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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quote:Originally posted by richedie: The shortness of breath thing may be in my mind - I can't tell anymore. Soetimes I feel I can't get enough air or take a big enough breath and other times I never notice it.
This perfectly describes my air hunger from babs. It's easy to ignore for a time, but when it gets really bad I feel like I'm going to hyperventilate. Then at other times, it goes away and I'm fine.
I hope you get answers soon. It's frustrating being undiagnosed.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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daise
Unregistered
posted
Hi richedie,
You wrote: "If you read sites on anxiety, they talk about varioous forms of tingling, numbeness and pain from anxiety disorders."
Yes--possibly Lyme or co-infections, yet they don't realize it.
richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Well, I go MOnday and this is a well respected LLMD guy so we will see. Thanks everyone!
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
Reading your post was like reading my own story. All of my nerve pain is in my arms, specifically the ulnar nerve. All the traditional nerve tests were negative, yet entrapment surgery was still suggested. I didn't have the surgery as my lyme and bart tests are positive.
I've been treating for lyme and bartonella for 14 months now. Good luck with your visit. I hope you'll get some help.
-------------------- Carol Posts: 38 | From Essex County, NJ | Registered: Feb 2007
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Thanks again everyone. We spent yesterday in New York visiting my wife's cousin and seeing her play. All the walking and standing left me with terribly painful feet, then my right arm started getting tingly and week. Then, I felt light headed and balance was bad, plus my legs felt like jelly.
If it is Lyme...why do my feet feel so much better with rest? I feel better lying in bed in the morning, like a new man. Then I walk and the hell begins.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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bettyg
Unregistered
posted
richie, suggestion, when you have any walking, do you have any of those small traveling, fold-up stools you can sit on and rest when your feet really bad?
i bought mine on a bus tour overseas; my folks had theirs all their traveling life. dad used it plenty even around this area when he didn't want to take his bigger lawn chair.
good luck; my feet have been problems for 15-20 years. plantar fascitis, HEEL SPURS ON BOTH, etc.
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