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» LymeNet Flash » Questions and Discussion » Medical Questions » Im loosing my ability to walk on my feet? Update

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Author Topic: Im loosing my ability to walk on my feet? Update
catina
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Im not sure what is happening.

Im in a horrific amount of pain in my feet.
The throbbing started months ago in the left foot it is now in both feet.

They are swelling because Im trying to tend to 2 children and do day to day tasks.
The pain is all the time. No one will give me a decent pain meds so Im using my own tens unit and pain relief from a personal family member but the meds are gone.

The dr. was going to give me more but forget or something he never called me back.
I cant go on like this.


Im begging the dr.s to take my foot pain away.
It is in the tops of both feet into a couple toes and in the top of the ankle joint were it bends at the top.

I have made a appointment in Poughepsi but mean while I can walk but from the bathroom and to bed.

Every dr. has sent me packing after my so called being cured.

Im so sorry for they broken post but what started out as acute lyme in oct has moved on to something much more aggressive.

I have gotten a ruhmatoid dr to only prescribe more doxy. 100 mg 2x daily.

Guys Im in so much pain. Child birth is equivalent to this kind of pain and at least they give you pain meds for that.

My Kingston dr. refuses IV antibiotics unless it goes back to a nerve issue.

I would like to self treat. Any help from you guys would be great.

I do apologize for the choppiness of this any history you need is in my previous posts.

I want to order meds and cysts busters over the internet if I can.

Any help would be greatly appreciated.
My appoint. is not till june.

[ 05-24-2012, 06:54 AM: Message edited by: catina ]

Posts: 38 | From kingston,ny | Registered: Jan 2012  |  IP: Logged | Report this post to a Moderator
glm1111
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Sorry for your pain and suffering. I have been there and the only thing that turned things around for me was using antiparasitic herbs and salt/c.

Parasites can be a MAJOR part of this disease and can cause horrific pain. You might want to visit lymestrategies for insight on the salt/c protocol and other ideas. Do a search on here for parasites and google parasite symptoms.

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

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Ellen101
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So sorry for all your pain! I can relate. I have been battling debilitating muslce pain in my hips that at times makes it difficult to walk. Are you taking any magnesium? Other members suggested I up my magnesium and it did seem to help. Also are you trying any epsom salt foot soaks? Perhaps that could provide some relief? I know how hard it can bwe to be in so much pain and have a family to care for as well.
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Lymetoo
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Have you seen a podiatrist?

I have Raynaud's and plantar fasciitis causing me foot pain. So tired of it, but not quite as bad as yours sounds!!!

I have found that some of my pain in my feet is from sciatica. When my back is bad, my feet are worse.

Do you think some of your pain is nerve pain?

--------------------
--Lymetutu--
Opinions, not medical advice!

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catina
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Lymetoo this is something to do with lyme.

After all my symptoms dissipated with the last 2 short rounds of doxy I acquired pain in just the left foot.

Over the course of the month it is in the same place as the right foot.

It is on the top of the foot in the muscle and joints on top.

I have tried Epson salt.
The tens unit gives me some comfort but even the air from the ceiling fan makes it hurt.

Crazy I know.

Yesterday i got my headache back and this morning my lower back seems to be back where it was when I was first diagnosed with lymes.

I let the rheumatoid dr inject cortisone into both feet to try to get relief but it did not help.

they have tested me recently to see how much inflammation is in the body and that came back okay.

They have done a lupus test this is negative.

They do say I have lymes arthritis but god forbid they admit the lymes is still in my body.
Remember they said Im cured.

Now my feet are in bad shape and my back hurts so bad.

What was the co infection that can resemble this?
I have not tried the magnesium yet. I will try.

Im on a low dose doxy for 28 days but I know that lyme will go into cyst form and just hide.

So I want to order meds online till I can get into the specialist that deals with lyme.

What herbal can I get?

I can try the salt/c regimen.

I think my eating habits need to be adjusted to.

Im eating anything carb related and Im thinking it has aggravated this situation.

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catina
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I think I need to do a parasite cleanse and try a detox.
Any recommendations?
Can I buy cyst busters online?

I do have some flagyl here but not sure how to take it.

I apologize for the continued questions but my energy level is good for only a couple hours in the am then Im exhausted the rest of the day.

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Ellen101
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Definitely try the magnesium. Especially if you feel it is in the muscles. You may see a huge difference!
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lpkayak
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u are very close to some excellent llmds

do u have money to go to them?

my bartonella presented that way...regular docs did a neuroma surgery that was horrible painfula dn did not help

the "air" hurting makes it sound like possible nerve-but nerve pain goes along with tick infections

at one point i couldnt tolerate a sheet on me so i know that pain

pm me if you want phone numbers...there is also anexcellent doc near you who does not advertise as llmd but he is very lyme literate

--------------------
Lyme? Its complicated. Educate yourself.

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lpkayak
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a lot of us seem to be dealing with foot/ankle problems

im doing what regular docs say with xray and mri but in the back of my head i am wondering if it is infection...defininte tendon involvement

hurts on top

ankle swells and has a black spot onit

i dont rememb3r injurying it

my mri is tomorrow-i think xray was neg

--------------------
Lyme? Its complicated. Educate yourself.

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catina
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Yes I can not even tolerate a blanket on my feet.
I can not even elevate them at this time.

They are doing a bone scan on the feet on the 14th.
I think it is nerve because the headaches are back and so is the back pain something has gone terribly wrong here.

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Lymetoo
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That's why I mentioned my sciatica. You must be having some amount of nerve pain going to your feet from your back since you mentioned back pain as well.

If you are not treating the lyme (no S), this will not get any better. Taking steroids can make the lyme flare horribly.

--------------------
--Lymetutu--
Opinions, not medical advice!

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glm1111
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Try Parastroy to begin with and look into the salt/c protocol by going to lymestrategies. I had all the symptoms you describe before treating for parasites. They can cause horrific pain and migrate to the tissues and joints.

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

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lpkayak
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catina-i raised mykids where you are

my oldest had the type of pain u are describing as his main sx-he is 45 now

in his early 30s he got good tx from an llmd a little south of you and he is fine now-working full time as programmer-racing cars...honest!!!

i am older and had it longer b4 good tx. i think that is why i am still struggling

--------------------
Lyme? Its complicated. Educate yourself.

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Lymetoo
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did you see your latest responses?

--------------------
--Lymetutu--
Opinions, not medical advice!

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annxyzz
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DOXY AND abx : 4 CORNERS Pharmacy
Thomas Labs VET MEDS Check amazon for pet doxy
edrugnet
magic pharma
Thomas Labs VET meds excellent quality and can get through pet med sites and amazon
Many have used doxy called "bird biotic "

Also , consider that VIT B 12 , folic acid , niacin, and B 6 deficiencies can cause nerve loss and pain and neuropathy . My mom got better with B supplements and B 12 shots . She had a great neurologist who said her VIT B issues were her biggest problem. May not be the case for you ,but should consider possibility .

Also consider herbs that increase microcirculation . Search "herbs microcirculation " on google. I am saying a prayer for you , as this is distressing and scary I am sure . Blessings to you , ann

--------------------
annxyzz

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Kudzuslipper
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What is it about feet? I found a topical product that is actually working as long as I don't overdo it. (which must be hard for you with two children).

It's called Neuragen. It comes in a cream, a gel and an oil. I got it at cvs but it is cheaper on amazon. I have to say I thought it was a fluke. But it continues to help. It smells very strong though. (lavender, geranium, tea tree). I find the oil less objecttionable. It also has homeopathic medicine, but from what I have read, it is the geranium oil that has some science behind helping nerve pain.

Did you ever try it tutu?

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Lymetoo
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No, I didn't, kudzu. Sounds too smelly!!

interesting what annzyz said about the B vitamins . My podiatist gave me a shot in my foot that had B vitamins in it. I think it helped. That foot is better and now my right one is the worst one.

I see him again tomorrow.

PS.. there's also a product called Tramuheel or something like that. My Dr's nurse put it on my neck for neck pain a few wks ago.. wasn't sure it really helped. Might work on my feet though.

--------------------
--Lymetutu--
Opinions, not medical advice!

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lpkayak
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"Also , consider that VIT B 12 , folic acid , niacin, and B 6 deficiencies can cause nerve loss and pain and neuropathy . My mom got better with B supplements and B 12 shots . She had a great neurologist who said her VIT B issues were her biggest problem. May not be the case for you ,but should consider possibility ."

i dont want to confuse things...and it could be my neuro that is wrong-you have me wondering now-but my neuro said my B (esp 6) and magnesium supps could be givng me neuropathy...and some can be irreversible

again...all i know is what he said. he insisted on testing my Bs and mag---no answers yet.

so confusing. but he is a doc who believes in elisa and 3 wks of abx = a cure.

--------------------
Lyme? Its complicated. Educate yourself.

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catina
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Thank you all for the feedback.

I was so tired the last couple of days I couldn't get back on here to see that some of you had responded more.

My headaches are back and at the same time the back is in pain. Minor tingling in the left hand.

The Rhumatoid Dr. wants me to see a pain specialist which upset me.

They keep sending me here and there and every where and just expect me to handle all this pain.

I would rather them give me new feet.

The feet are getting better as long as I stay off of them.

This time around on the Doxy Im doing 200mg twicw a day. They only gave me a 28 day dose.

So it wont last long.

Also not alot of progress this time like before.
If anything my head and my back came back after starting the doxy.

Not sure why?

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Lymetoo
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catina said .. "Also not alot of progress this time like before.
If anything my head and my back came back after starting the doxy.

Not sure why?"

Sounds like a herx. Pretty normal.

--------------------
--Lymetutu--
Opinions, not medical advice!

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bcb1200
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You have one of the most famous / best LLMD's in the country right across the river from you. Why not go see him/his team?

--------------------
Bite date ?
2/10 symptoms began
5/10 dx'd, after 3 months numerous test and doctors

IgM Igenex +/CDC +
+ 23/25, 30, 31, 34, 41, 83/93

Currently on:

Currently at around 80% +/- most days.

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lpkayak
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in the beginning b4 finding llmds my feet were scheduled to be amputated by a famous nyc foot doc

thank god i went to a conference-listened to all the big wig llmds-long time ago---the very beginning of ilads...

they told me-you can cut them off but you wont get the infection...it will just start up somewhere else...you cant keep cutting things off

my experience was the bad foot pain was bartonella and rifampin made it go awawy

rifampin was hard to take---had to start with a crumble of a pill. in 2 weeks got up to prescribed dose...and after felt sooooo much better

many others on here also have trouble with rifampin but good results

you are lucky to be within driving distance of many good llmds...pm me if you need more help

--------------------
Lyme? Its complicated. Educate yourself.

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Jason21
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Assuming that other medical causes or conditions have been ruled out and that you most likely have LD, then it is possible that your foot pain is due to co-infection of bartonella, especially since sore feet is a hallmark of bart.

I had foot pain for years (along with other aches and pains all over) which finally got better after treatment for LD and bart. 6 months of cipro and tindamax worked great for me. Cipro does double duty because it fights the bart and also helps to shuttle other abxs into the cells where they can attack the TBDs.

Recent studies have shown that Tindamax is by far the best abx for all forms of LD.

--------------------
Igenex WB IgM 28+, 31IND, 34IND, 41+
WB IgG 30+, 31IND,39 IND, 41++++, 58+, 83-93IND
CD57 = 56
Prob infected since 2000
Doxy, Zith, Biaxin, Flagyl, Levaquin, Tindamax, Cipro
Highly Recommended: Trigger Point Therapy Workbook by Clair Davies

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JessieJoy
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Yup, crazy foot pain was one of my first symptoms. It was my soles, they were so tender, sometimes I could barely walk, especially in the morning.
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JessieJoy
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ended up being bartonella!
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catina
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5/24
Update:

I had the 3 phase bone study of my feet.

It show abnormal uptake flow and they now need to do a MRI to rule out Osteonecrosis.

I know in my heart this is a wasted test because it truly feels like one of the co-infections.

The Dr. now are giving me pain med to cope with the pain and it is better.

It still hurts like the dickens to walk on my feet though, but its double for now.

The Rhumatoid Dr. has agreed if this MRi show negative to Osteonecrosis then he is going to have me meet with him and the other origanal infections disease Dr. to start some form of IV antibiotics.

Im truly ready for this.

I do not believe the other Dr. is going to treat me properly for the co- infections so my origal appointment with the LLMD in Poughepsi will stay as is.
I just need some form of relief before I loose my mind.

Thank you all for your continued support. It truly helps.

I have continued to go over symptoms of Bart and Babs and because they overlap Im not sure which one is the cause Im thnking because of the pain it is Bart.

But this week i started to shake in chills but no fever.
Not sure why though.

Im getting alot of leg cramps also cramps in my feet where it is sore.
My headaches seem to have dissipated also.

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catina
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bcb1200 could you PM me this Dr. info please.
Thank you

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lpkayak
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my foot and ankle mri gave a lot of info i wasnt expecting...large cysts, spurs, and old fracture...

i am also struggling with how to deal with ducks who read and tx as if lyme isnt an issue...my radiologist said mri of brain suggested lyme but neurologist said he KNEW the whit matter changes were not lyme...he just didnt know what they were

he KNEW it wasnt lyme cuz he had just been at an idsa workshop...

good luck. i am stuck not knowing how to respond to such ignorence

--------------------
Lyme? Its complicated. Educate yourself.

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catina
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I agree lplayak it is pure ignorance.

Im sure come next week Im going to be even more angry at the way these Dr. treat patients like us.

these drs here also believe lyme isn't an issue.

My Dr. says im cured and if I had Bart I would be dead because it is a Malaria.

I even tried to go to Hyde park to see a LLMD who doesn't take insurance anymore and my Rheumatoid Dr. says go ahead and go he doesn't take insurance because the insurance companies got wind of treatment and false treatment of Lyme and cut him off.

So insurance companies like MVP left first then others followed.

That was very encouraging.

today's is a bad day emotionally for me.
Im enrage, crying angry.

I hate life and Im angry that I cant play with my children the they need me to.

A part of me just wishes I wasnt around.

I want my old life back.

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annxyzz
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You might benefit from MTHFR testing . If you are deficient in folic acid it can cause pain disorders and mood issues . Just a possibility . There are many people like my MOM who have BIZARRE symptoms from deficiencies of : B vitamins, niacin, folic acid ESP B 12 .
Also , I have known people who had BAD pain that dissipated after addressing the fact that they were deficient in VIT D . This ALSO affects immune function and moods as well . A test to measure folate and VIT D might be helpful.
If you are not taking fish oil, I would start and take generous amount of apure variety. Your pain probably involves inflammation, and fish oil can help . It can help with moods at the right dose.

--------------------
annxyzz

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lpkayak
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"My Dr. says im cured and if I had Bart I would be dead because it is a Malaria"

what an A$$...mine wrote lime in a report today

--------------------
Lyme? Its complicated. Educate yourself.

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Lymetoo
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It is babesia that is similar to malaria, not bart.

Also.. it sounds like you have both bart and babesia.

-----

Why don't LLMD's take insurance??? ( some do )

The reason .. HERE:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/2/15615?#000005

SEE "TF's" REPLY ON THE ABOVE LINK. PERFECT EXPLANATION!!!

--------------------
--Lymetutu--
Opinions, not medical advice!

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