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» LymeNet Flash » Questions and Discussion » Medical Questions » A year and a half into treatment and losing hope....

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Author Topic: A year and a half into treatment and losing hope....
richedie
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I just feel like it is over. The pain continues on, pain medicine only makes me feel worse due to terrible nausea. So, I have to live with the hellish pain. Maybe I will just start smoking MJ 24 hours a day, maybe that will help.

Let's see 17 months and it continues to worsen. I feel like I am wasting my time. I don't feel like taking my abx any longer, nor following my stupid diet. I am tired of sucking down 4 tsp of Mepron a day. I hasve to type this with one arm because the pain in my left arm feels like someone is stabbing and burning me. It gets worse with typing and movement.

Feet still go to sleep, burn, hurt, you name it.

I look like skin and bones, I can barely keep my pants up.

I don't understand why I never get better and must be sentenced to live in Hell!

--------------------
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

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sixgoofykids
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I'm sorry it's so rough for you. [Frown]

Think back at your old combos. Were there any that helped?

--------------------
sixgoofykids.blogspot.com

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richedie
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Yes, but we went back and re-visited those to no avail.

My doctor says salt/C is a waste so I haven't done much with that. I might try Humaworm though.

--------------------
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

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abigail
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Having Lyme is so weird. I mean they know so much more about say cancer. They go through hell with the hope of remission or they know the chances of survival are poor. Or AIDS. They know they are only buying time or whatever by the lab tests (T-cells.) But us, we don't know what to expect. We hardly know what we are doing. This is absolutely the worst part of the disease. It is like fighting a monster in the dark.

--------------------
Dying is easy. Living is harder.

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lymebytes
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So sorry - I know exactly how you feel. I am 3.5 years into this and have felt exactly what you describe. I wanna quit, I wanna stop, I want out of this!

It still doesnt' make sense to me that a bacteria could survive the onslaught of abx we do. I wonder, what planet it is from, seriously.

I felt like I was making small progress in the second year, but it seems gone.

The pain I have had cannot be put into words, the fog, this is insane.

There has to be hope...I mean seriously, this crap can go into remission. People do get well, some say they feel better than prior to lyme when they get well. That seems so far away to me.

I haven't done IV and looking at your abx, it doesn't look like you have either. How about Bicillin? Bicillin is when I did make progress, SLOWLY but I quit too soon. Thinking about going back to it.

I keep praying I will wake up and this nightmare will be over, I just want my life back. I hope the same for you and anyone else who just is worn from this hellish battle. Trust me - you aren't alone.

--------------------
www.truthaboutlymedisease.com

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LightAtTheEnd
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I can empathize with your frustration, even though I am not very sick like you and have been at this a much shorter time. It's SOOO frustrating that there is not one thing that is certain or predictable about this disease. I can't believe how little is known about it, or about our future prognosis.

I read in other threads that Mepron can make you very depressed, so I wonder if your feeling like giving up could be from taking that?

Don't give up. I am still looking for the best way to get over this thing (and how I'll even know when I have), but I know giving up isn't it, so I have crossed that off my list of things that might help.

--------------------
Don't forget to laugh! And when you're going through hell, keep going!

Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009.

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Geneal
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It took me over 14 months of mepron/biaxin and malarone/biaxin

To get "past" the dumps and pain.

Remember, both mepron and malarone can make you feel depressed too.

I understand how you feel.

I am back treating babesia after 6 months in remission.

Herxed like crazy off of one biaxin.

Familiar unwelcomed territory.

I say hang in there.

It took me almost 3 years of straight treatment to get to "remission".

My LLMD still feels that Lyme is in remission.

I'm just dealing with the company.

I was down to 94lbs during babesia treatment.

I couldn't keep weight on especially on the yeast free diet.

I had to get off the diet and get some weight back on.

Have you tried the diflucan protocol?

Just a thought.

I've done it concurrently with babesia treatment.

It helped me manage the yeast while off of the special diet.

I take 200mg of diflucan daily for 60 days.

Off for two weeks and repeat.

I feel that for me, this made a huge difference.

Brain clarity, speech and word finding skills returned.

So did Hope.

Hang in there my friend.

Sending you prayers of healing and hope.

Hugs,

Geneal

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daisyrlb
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Richiedie, I am so sorry for your suffering. You say you "feel like it is over". I understand and no one faults you for feeling that way, especially after going through all you've been through. However our feelings can (and often do) lie to us.

It is not over--proof, you are still here!

Dr. K and Dr. J (and others) recognize that we are more than just body. (If you don't know who they are you can PM me and I'll give you links.)

We are a whole person and the whole person needs to be treated, ESPECIALLY IN LYME DISEASE!

The evidence is showing that when the whole person is treated we get better, and better faster. The "whole person" is said in different ways, such as: physical, mental, emotional/soul, spirit/faith or physical, energy, mental, intuition, spirit.

If we lose hope it really has a drastic physical effect on the body.

I join with Geneal in praying. (May the God of all hope fill you afresh with hope today.)

I'm praying for your healing.

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txgirl09
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Richie,

Have you thoroughly been tested for viruses and other things? What did your LLMD say at your last visit?

You are in my prayers. I know, this is so tough and frustrating. I've been going backwards myself.

Txgirl

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kellyjk4
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rich,

I sent you a pm.

Also, have you looked into taking something for nausea just long enough to allow pain meds to work?

There are lots of medications out there to try. If you haven't seen a pain management specialist yet, you really should.

My pain dr has basically kept me sane over the last few years, even before we knew I had lyme and co's.

--------------------
Take care -kelly
---------------

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steelbone
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IMO- Its time to think outside the box

Not sure how well abx alone will work for chronic lyme.

I am on the Slat/C group and many people have done well. I have choose not to do it..Just my choice.

Keep thinking positive- A break will come your way

--------------------
All The Best,
Paul
[email protected]

The harder you work the luckier you get!

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Vermont_Lymie
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Mepron made me sleep 14 hours plus every day and feel down and lethargic. I was taking only 2 tsp each day -- you are taking 4.

Hang in there. Depending on your body, treatment and how sick you were, it can take well over 17 months to feel better.

After 5 months on mepron, does your doctor think that you can switch it out soon?

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METALLlC BLUE
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My doctor told me for years that "This or that" was a waste of time, and to stick with Tetracycline long term. Since I improved a little, I figured if I was patient long enough things would work out.

He told me co-infections weren't a problem, that detoxification was a waste of time. He told me so many things.

He turned out to be wrong, wrong, wrong. Beware of those who tell you to do it "their way" even as you get worse and worse over "years."

I gave him 7 years of my life before moving on. I later found I had multiple co-infections. All he had to do was run testing through Quest and he would have found the Rocky Mountain Spotted Fever, Mycoplasma, and CPN.

I had many more, including Babesia, which has responded well to Malarone.

I'm filled with heavy metals, especially Cadmium and Mercury, yet he told me I was fine. Well, test results show he was wrong yet again. My adrenal glands weren't shot, fortunately, but they were pumping out enormous amounts of cortisol in order to cope with the chronic stress. Without lowering those levels, I couldn't get my immune system to work correctly. He told me that wasn't an issue either!

Today, I have a new doctor and I am seeing results.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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glm1111
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Richie,

So sorry you are suffering. PLEASE reconsider the salt/c protocol. It has saved my life and continues to do so.

I also incorporate antiparasitic herbs and coconut oil. I used to be on morphine and am pain free. Wishing you the same,

Gael

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

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landerss
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Have you tried KPU and/or methylation support supplements along with your antibiotics? A number of folks, including myself, have realized strong gains when these are added....

--------------------
Increasingly ill over past 10 yrs; treating since October '08.

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richedie
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I am NOT lethargic, I have NO fatigue. I have the energry of a 100 bulls and feel I could climb Mt. Everest....but it is the pain that kills me!!! The pain is hell. The pain, the numbness, the sometimes brain fog, but not often. My number 1 issue is pain! Pain, pain, pain.

I tried anti nausea medicine to no avail.

My doctor says I have Bart, Babs and Lyme, she has not tested for other things because she said I do not have those symptoms.

I can't do salt/c while on ABX, right????

--------------------
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

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glm1111
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I think some of the people on lymestrategies are on abx and also salt/c. Not sure though if Vitamin C can interfere with some antibiotics or not. Maybe someone else will know.

Gael

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

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richedie
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I believe xoxoxox said this helped some people he/she knows. I might check it out.
Here's the website if you are interested:
http://www.advancedcelltraining.com/

--------------------
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

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richedie
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I believe xoxoxox said this helped some people he/she knows. I might check it out.
Here's the website if you are interested:
http://www.advancedcelltraining.com/

I stopped eating a strict diet because I can't take it any longer. I had buckwheat pancakes for breakfast, this afternoon I made a brown rice crust pizza and am sitting here eating shredded wheat cereal.

--------------------
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

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METALLlC BLUE
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Me too Rich, the diet is just insanely frustrating. It just doesn't help me much but I know it's necessary. It doesn't have to be insane, but I've got to keep trying to piece together something organic, low in sugar and grains, and just try to focus on foods that make me feel good as opposed to bloated, or digestive upsets.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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seekhelp
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I know the hopeless feeling too Richie. I'm getting there. Treating since Aug-08 with little to show for it but a lighter wallet.
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Parisa
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My husband did better on malarone than on Mepron. I don't know why, he just did. He combined it with IV Flagyl, then IV Zith, then he had IV clindamycin and qualaquine and with that we really knocked the babesia out.

So maybe you need to try malarone and maybe you need to do IV. My husband did a year of oral antibiotics and he just lost weight and got worse. If oral antibiotics work well for you great, but if you've been on them for over a year with little progress then you should really put some serious consideration into IV.

Yes, IV has its drawbacks but so does every day of decreasing function and increasing disability.

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janice victorov
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Hi,
please hang in there. I know how tough it can be.

I wanted to give up when things looked miserable and hopeless.

Keep people who love you around and cry, vent, to get it all out. It helps.

I went through this last week and felt so depressed.

I'll say a prayer for you. Janice

--------------------
jkv44

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richedie
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My doctor does not use Malarone and she is not a fan of IV. She never found IV to be any better than standard oral abx in her experience.

I talked to a nutritionaist who had Lyme pretty bad and said she consumed a raw vegan diet and got better. Now, she is back to regular eating but she said getting back to nature and eating that way cured her. I thikn she is still mostly vegetarian like me.

I eat grains like they are going out of style. I never, ever have bloating issues, etc.

I might eat grains but they are good grains, lots of fiber, sprouted grains, oats, brown rice, etc. These are shown to not cause candida.
I am going to try two different diets for extended periods of time and see how I feel. One is something like the Ecology diet and then an all organic, vegan diet. I felt my best when i was vegan so we'll see.

First I am going to get tested for food sensitivities.

--------------------
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

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nefferdun
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I hope you can find something to help you soon as it is so hard to be in pain all the time with no relief.

Have you tried B12 injections? Our bodies are depleted of B12 and the side effects are very similar to lyme disease so we just get worse. I have two friends that had B12 injected directly around joints and it erradicated their pain from arthritis. They do not have lyme but taking injections might help you overall and sure can't hurt. They are very cheap and you can give them to yourself. Also double up on B complex as many of the B vitamins help support healing and stress.

Magnesium is necessary for the muscles to relax after the contraction phase, which is stimulated by calcium. It is depleted by lyme so you need to seriously supplement it with up to 1000 mg of a chelated form, not magnesium oxide which is cheap and just dumped into your system causing diarrhea.

Then try to supplement your diet with other things that help with healing and inflammation. Look at a nutrition guide to see which foods are loaded with what you need to get healthy and make a commitment to eat well, concentrating on the super foods: salmon, chicken, spinach, broccoli, berries, walnuts, almonds, ground flax, yams, oats and brown rice are a few I try to eat a lot of.

Make sure you get enough Vitamin D3 as well - get out in the sun and supplement in winter. It is critical for immunity. Don't rely on fortified milk.

Take amino acids. L Lysine helps with healing and stress. DL Methionine aids in detox and is good for arthritis and depression and body pain. It is converted into Same-e in the brain. Acetyl L Carnitine (1200mg) helps convert fat into muscle and also helps you to use glucose for energy as well as fat. It is very good for memory and brain fog. Take it with 600mg alpha lipoic acid.

Take a collagen replacing supplement like hyaluronic acid - a good source. Lyme lives in the collagen of your tissue - joints, skin and eyes - so it is important to replace it. My eyes hurt real bad when I don't take it.

If you smoke, quit as the nickel in it can cause fibromyalgia. Tobacco is full of heavy metals.

I ordered a product to help my lame horses and took it myself. It got rid of the aching in my shoulder almost overnight. It was very expensive so I got curious about the ingredients which are listed above.

Instead of giving up, try harder.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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METALLlC BLUE
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quote:

My doctor does not use Malarone

Big mistake on her part. Malarone was the only anti-babesia therapy that worked for me. In-fact this is the case for a lot of patients who don't respond to Mepron.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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ping
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quote:
Originally posted by richedie:
I am NOT lethargic, I have NO fatigue. I have the energry of a 100 bulls and feel I could climb Mt. Everest....but it is the pain that kills me!!! The pain is hell. The pain, the numbness, the sometimes brain fog, but not often. My number 1 issue is pain! Pain, pain, pain.

I tried anti nausea medicine to no avail.

My doctor says I have Bart, Babs and Lyme, she has not tested for other things because she said I do not have those symptoms.

I can't do salt/c while on ABX, right????

richedie - I mirrored your sx's. I had minor fatigue, but pain was the overriding issue. I spent 5 yrs on abx in order to get into remission and it took about 3 years to begin to note recovery, so don't give up, please!

I didn't have Bart but did have Bb and Babs. All I can do is let you know that many of us share the pain.

Quick healing and pain relief to you.

--------------------
ping
"We are more than containers for Lyme"

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secondtimearound
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I have to disagree with your doctor regarding the salt/C comment. When I was looking for other options I reached out to numerous people regarding rife and salt/c.

One person in particular answered my email concerning rife and said rife helped him but salt/c was his choice for certain reasons.

We became very good friends over the years - him doing salt/c, changing his diet and detoxing and me doing rife mainly with some salt/c, meds and detox mixed in.

We are still good friends today and he is completely well and I made it back too.

There are other options available.

Wow - while reading this post I noticed I'm the third person from Phila. and you are not to far -maybe we should all get together and compare notes.

All My Best!

--------------------
BTW - I am NOT a medical professional - just speaking from MY own personal experience.

Posts: 266 | From Philadelphia | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
richedie
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nefferdun,

Yes, the pain is relentless. I tried two meds, neither helped. Percocet and Ultran. I became terribly ill off the Perc.

B12? I was tested and my levels are fine but I am going to up the B Vitamins. I am practiczlly a nutritionist. I went to school for nutrition before switching majors and have over 25 books on human nutrition. I will ask my doc about B-12.

Magnesium? My levels seem fine but I do supplement in addition to eating Magnesium heavy foods.

I have tried everything you can think of for pain and inflammation from herbs to foods to baths....nothing works.
The foods you mention I eat in abundance so no issue there. Although I do not eat much chicken and fish makes me sick.

D3? The liver stores D3 and typically we have enough to get through the winter but I do supplement and get enough sun, even in winter.
I don't drink milk and fortified milk is a JOKE!

I do take amino acids and undenatured Whey.

I have been meaning to try Sam-e

I am told to stay off alpha lipoic acid and C0-Q10 supp's due to issues with Mepron absorption. That is debatable.

Have you had luck with hyaluronic acid?

Never smoked and do not drink.

What is the product you took for your shoulder????

The salt/c thing is interesting. Science tells us this could not possibly work and looking at the human body you draw the same conclusion and yet people are reporting that it does work.

For the Philly folks, where do you all live? We should get together for sure.

Do you have a good link to the Salt/C protocol?

--------------------
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  |  IP: Logged | Report this post to a Moderator
sickpuppy
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richedie, I'm new to treatment but I've been sick a LONG time so maybe this is old news to you. I'm reading the book Adrenal Fatigue by James L. Wilson. Have you done an adrenal support program?

I don't want to disrespect your vegetarianism as I was one off and on for about 15 years, but have you TRIED eating meat? Wilson says he doesn't believe people can recover from adrenal fatigue without eating meat.

Also I have 2 friends who were rock bottom with lyme. They did direct IV ozone. One did a treatment of antimicrobial IVs and lipid injections with a doc in NYC. If you want practitioners names, please PM me.

Also maybe it's time for a new LLMD?
Anyway, just trying to help. Hope you find relief [Smile]

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timaca
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richiedie~ From reading your posts you have pain and numbness with occasional brain fog. No fatigue. You have lots of energy. Correct? Do you have other symptoms besides pain and numbness?

Timaca

Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005  |  IP: Logged | Report this post to a Moderator
secondtimearound
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Last block in the city; the somerton section but born and raised in south west philly. Let me know when and where - I am able to drive.

http://health.groups.yahoo.com/group/lymestrategies/messages

All My Best!

--------------------
BTW - I am NOT a medical professional - just speaking from MY own personal experience.

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Parisa
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If your doctor doesn't do IVs or malarone, what other Lyme treatments does she not do? I would seriously consider consulting with another LLMD as her treatment options seem limited. (Some doctors don't do IV because they want to fly under the radar and not bring attention to themselves.) And, yes, maybe her tactic works with a lot of patients but if you are one of the ones it won't work for then you need to find someone else as hard as that seems.
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lou
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Well, I can understand that having to deal with relentless pain would be depressing.

This is not my situation but I can no longer think of any reason to continue the fight. It has been years. Everything in my life says quit.

In the past I would suggest to people in your situation that they just try to live one day, get thru the day, that was the goal. Not look ahead. And really, some people have been at it much longer, so there is still hope for you. This is a neurological disease, which is why you have the pain.

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METALLlC BLUE
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I have to agree with Parisa.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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robi
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I saw you mentioned your magnesium was fine. Mine was " fine" also. BUt when the did an RBC magnesium they fiund a huge deficiency. I took IM magnesium and that helped with the muscle pain that yielded to nothing else.

Also, have you tried Bicillin, after about 6 months on that I started seeing improvement. I had taken many orals with very slow if any improvement. At 1.5 into treatment I wanted to give up also. Now in year 6, I have a life. I still work for more recovery but at least I have a degree of pain free enjoyment. Life is worth living again. You will get here even though it seems impossible now.

It is ok to take breaks and ok to change docs.

Other things that helped with pain were the infrared sauna 3 to 4 times a week and coffee enemas ( i know i didnt really want to do it but it REALLY helped. )

SO here's the list of things that helped: (not in any particular order)

Bicillin
IM Magnesium (after getting RBC mag tested)
FIR Sauna
Weekly accupuncture treatment
Coffee enemas ,,, big time fast relief !!!!!!

I would not try these one at a time ............. start with one and and as you can. Get that RBC magnesium tested (can be done at labcorp). If deficient, replace with IM injections administered by a professional. Ask to have a little lidocaine drawn up in the needle as well.

You can reach me at sciencerat1"at" yahoo if you want more info. please put LYME PAIN in subject.

hope this helps,
robi

--------------------
Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy'

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richedie
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Symptoms - Pain and tingling/numbness are the two biggest by far! I had some fatigue when this started but that vanished. My doctors speculate that being so heavily involved in exercise, sports, weight lifting most of my life...that my blood is well oxygenated, etc.....Somehow, either way....I escape the lack of energy issues.

I get ringing in my ears, sometimes one ear will go out and I get inflamed eyes, etc Tons of floaters since all this started. Still have some balance issues, nausea, air hunger, etc. Oh, burning feet!

My doctor said she has had luck with Bicilin shots but only as it helps people get better while on other meds, she never saw it cure anyone. I might still try it. She said she hasn't found IV too successful. I still may look around in PA for a doc too.

Acupuncture did nothing for me after many treatments.

I take Chelated Magnesium but maybe you are right....maybe I am very deficient.

Coffee Enema? What does that help with????

Secondtimearound - my wife was raised in West Philly and her mother/step dad still live in South Philly. We are now in the King of Prussia area. Maybe we should get a bunch of us together at a cafe/coffee shop or something.

--------------------
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  |  IP: Logged | Report this post to a Moderator
   

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