In the last 3 weeks symptoms seem to be coming back .
I was thinking I over did the gardening and that is why my feet hurt so bad.
Then 2 days ago I woke up and my lower back hurt like it hurt the first time I found out I had lymes.
I could bearly wipe myself . TMI sorry.
Next day my lower back felt a little better but my neck hurt.
Then that eased up. not my feet though.
Nothing I take for pain helps the top of my feet stop hurting.
I tried using the R-Stim machine over the weekend.
It temporarily relieved the pain for about 10 min. Since then I have been getting some small for of tingling in my breasts. Almost like Im breastfeeding again. that feeling you get when you have let downs.
My left knee hurts also. Some days I can barely bend it.
My energy level is also gone. I waked up and want to go back to bed.
Here is my delema.
Im in denial this is a relapse.
Also my Dr. doesn't think someone can relapse.
Also my LLMD thinks that I just need to loose some weight and this will ease the stress of my back , and feet.
The Nurse at my dr. office said if it was Lyme again it would be constant issues, not one good day then a bad day.
She suggested FIbermyalga. I dont believe this.
Also my dose of doxy was like a maintenance dose. 100mg twice daily the first round. then the second round the Dr. prescribed the same dose and I doubled that 21 day dose. which meant I did it for almost 10 days I believe.
All I know is I hurt and Im exhausted and very irritable lately.
Posts: 38 | From kingston,ny | Registered: Jan 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Catina,
I am so sorry to be the one to tell you but you are not relapsing. You have not yet received the appropriate medical treatment for lyme. It was never treated to begin with, really.
You were given way too low of a dose, BOTH rounds.
Given just one Rx (where several are needed to address the different forms of borrelia)
and it appears that you have not been assessed for other tick-borne infections that usually go with lyme (they require different Rx).
It can take 6 - 7 months up to a couple years to effectively treat and this usually requires rotating various Rx along with specific support measures to help prevent a system yeast infection and to help the liver.
That your doctor now suggests Fibromyalgia is a clear sign that she does not have the education or experience to be your doctor.
I am so sorry. However, NY has many Lyme Literate (LL) MDs. Sadly, most are not able to get insurance reimbursement but, sometimes, you may find one who can.
Still, it will do you no good to go back to your GP who wants to write this off as Fibromyalgia. Many here had past misdiagnoses of FM or Chronic Fatigue Syndrome.
Links below should help guide you.
Be sure to post in "Seeking a Doctor" forum. Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- See Burrascano's Treatment Guidelines here:
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Keebler I need to find a new LLMD. He was not helpful. Like I said he suggest I need to loose weight. Im 5'9 and was 267lbs when I saw him. He thinks your cured after the one round of ABX.
Something is so wrong with me.
Posts: 38 | From kingston,ny | Registered: Jan 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Wait a minute. I went back to re-read. My eyes must have skipped over this section where you say:
"Also my LLMD thinks that I just need to loose some weight and this will ease the stress of my back , and feet." (end quote)
then you go on to talk about your GP.
So, it seems you have a LLMD?
But I don't think this person is really a LLMD if they said that about your weight.
Because . . . a LLMD KNOWS that weight gain, pain and foot pain are common with lyme and BARTONELLA.
They would stress the importance of good food, of course but they would not tell you your weight was causing this if you did not have these same problems before you contracted lyme.
A real LLMD would KNOW that it can be nearly impossible for a patient to loose weight UNTIL lyme & co. are better under control.
Still, they would stress the importance of good health habits but not just the standard: "Loose weight, weight is the cause."
I assume the doxy dose was guided by this supposed LLMD, then? If so, clearly that person is not at all an ILADS-educated lyme literate doctor.
And - you need to be assessed for Bartonella. The foot pain is classic with bart. Bart often travels with lyme.
Sorry. Still, there is hope. Glad you are asking questions. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thank you keebler. I will try to see a different LLMD within the group that he is in. Meanwhile any suggestions on how to get the pain in my feet to not hurt. Im about ready to walk on my arms I hurt so bad. I cringe getting up to walk.
Posts: 38 | From kingston,ny | Registered: Jan 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- We must have been typing at the same time. No longer then, does that doctor deserve "LL" to be before the MD. He is not one. He's just a MD who is uneducated.
If you've not yet connected with your local lyme support group, please call them and give them this doctor's name as a LLMD imposter so others will know to avoid him.
Curious, is he an "Infectious Disease" doctor? (Most follow the IDSA guidelines detailed in the thread above).
How were you directed to him? I'm guessing by your GP.
Well, there is hope with good treatment. Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Catina,
You say that you "will try to see a different LLMD within the group that he is in." (end quote)
I seriously doubt that will solve the problem. Are you 100% absolutely sure that
"a different LLMD within the group" would really be a LLMD. We do not use that term lightly.
Not all doctors who SAY they treat lyme are really LLMDs.
Most likely, ALL the doctors in that group would have done the same thing as the other doctor and will probably dismiss you immediately.
From the sounds of that other doctor, they probably follow the IDSA guidelines AS A GROUP and would never allow an ILADS LLMD in the building.
This thread can save your life: -------------------------------------
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
[ 03-28-2012, 05:21 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I've been there with the feet hurting so badly.
First, good foot support. Never walk barefoot, even to the bathroom. Birkenstocks may help but should not be the only footware you wear.
A good athletic shoe that does not bend in the middle is best. Good orthotics.
You might need to sleep in a foot brace to keep your feet in line.
Search: plantar fasciitis
Now, that may be what is going on - or part of it but it may not be it or may not be all of it. Still, the same help for plantar fasciitis support can help.
A good podiatrist can help assess your footwear, your gate, and any structural stuff that may be going on.
But AVOID STEROID SHOTS if offered.
If foot pain is from Bartonella (and I'd bet on that), a real LLMD can assess that and treat.
In the meantime:
Magnesium
Fish oil
Milk Thistle
OLE (Olive Leaf Extract)
SEAGATE is the only brand of OLE I can suggest. It's a good supplement that should help as you find a LLMD. Just Google: Seagate OLE
I hope others will join in from here with their thoughts.
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